I hope the holidays are finding you well. It’s been a long time since I updated, but it seems life has been so busy with it’s ups and downs. Overall Jesse is doing well, we did have some setback s with the wound healing and some issues with loose bowels. We did a few labs and found him to be low iron, since increasing his iron the wound is hanging stable and the loose bowels are back to normal again. Nothing too exciting has been happening, we corrected the spasms in his sides again when eating. He is doing well with digestion again Praise the Lord. Recently we learned about a machine that looked interesting. The original “Chi Machine” Chi Machine facts. Scroll down to Fast Facts and look at the medical documentation also. We were able to rent a machine for $30 a week here locally from one the Wellness stores. I was amazed at the overall joy that Jesse is having from it. He is smiling much more, mentally involved in more and seems interested in everything around him. More than he has been in the past few years. So we looked around as these are not cheap, and found one of the Sanfilippo Foundations that help families get things to help their children that insurance will not cover. So with this foundation, we were able to get the machine for Jesse. It has improved his quality of life in many ways. You can see the pictures above, these are all from the past month since using the Chi Machine.
Here are a few of the benefits from it.
The Chi Machine creates massage of internal organs via passive aerobic exercise. Movement of the body - consistent motion energy - creates cellular oxygenation of both the body and the brain, thereby allowing:
1) Reduction in muscle soreness, tension, stiffness, body aches and pains. 2) Improved flexibility of muscles and joints, more limber - spinal alignment. 3) Improved function and regulation of internal organs and body systems. 4) Improved circulation of the blood - activated lymph drainage and detoxification. 5) Alleviation of stress related conditions - headaches, anxiety, depression. 6) The brain shifts into a relaxed Alpha brainwave state - mental calm, focus, clarity, and relaxation. 7) Steady weight loss correction if under or over weight, or menopausal. 8) Sound, restful sleep 9) Improved metabolic rate - Increased energy and improved sense of well being.
That’s about it for now, May you all have a Blessed Chrstmas and a Happy New Year!
May God continue to bless you and your family as he is ours. Thank you for checking in on us, and please leave us message in the guestbook and let us you stopped by. We love knowing who cares enough to check in on us. Thanks again.. till next time.
Please check out the "How You Can Help" link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Friday, September 6, 2013 5:47 PM CDT
Hello friends and visitors,
It’s been the longest time ever I think since I’ve updated. Jesse has been recovering from his surgery and MRSA issues very well. The wound is almost healed. We only have a skin area left that is 2 x 3 centimeters in size to heal. He is such a fighter. We have a follow up with the wound clinic and doctor on Monday morning Sept 8th. We made the trip to Long Island, NY for the MPS summer barbeque/picnic. It was an awesome time. Jesse and I hitched a ride with another Maryland family in their truck. The hotel was fabulous and all the MPS families that we see online were just as nice and what we expected in person. We saw some old friends and met many new friends. This was wonderful for us, as we will not be making the annual MPS conference in Texas next month, so it was our chance to be with like families even if only for a weekend. Below is slide presentations of a few of the pics from that weekend. Click on full story to see the full pictures, if any don't show up, right click and click show picture.
August was relatively cooler than usual so while Jesse off school we got to outside more than we thought. We spent days walking, swinging, going to the park and even shopping. I have been blessed to be able to have a nurse for him Monday – Friday 6 hours a day when school is not in session so I can work. This has been wonderful; it has taken 2 years to get this approved. I’ve been able to go kayaking this summer and will continue to do so about once a week as long as weather permits, and we visited the Maryland State Fair for one day also. Jack and I also celebrated our 34th year Anniversary. Stephen and his wife had a nice dinner for us on the deck with steamed crabs and other goodies!! Jesse also turned 18 this year, so we filed for guardianship in order to have true legal say about his affairs. Maryland requires a lawyer to do this, you cannot do it yourself. Fortunately contacts thru the gym I belong to hooked us up with a lawyer pro bono to do this for us. They were super and did things very quickly and efficiently. Thanks to my gym family, we were able to do this without trying to scrape together two – three thousand dollars that we did not have. August also was the start of a small downfall for Jesse, he started having swallowing and feeding issues. Congestion started forming more than usual and he wasn’t processing the phlegm. He was coughing and choking on many of his foods and especially his supplement pills. Towards the end of August he started having spasms in his right side again as he ate and would fall asleep and become lethargic while eating and not want to finish his food. When this started I realized this is the same thing that started 2 years ago when the acupuncturist diagnosed him with liver congestion. So I emailed my Doctor of Chinese medicine who has since moved to Hawaii, and asked him about the one formula we used when he got bad 2 years ago. So while waiting for the response (2 days) I started him on some Liver cleansing herbs in oils I had here prior to using the Chinese herbs. They worked somewhat 2 years ago, so why not now. The very first day of giving Jesse just 3 drops of Barberry, and 3 drops of Green Walnut Hull and Wormwood Extract – both are liver cleasners, then in the evenings I gave him Burdock root and dandelion tea, he woke up the next day 50�etter. I continued using these for 5 days until the formula my Chines doc told me get came in and by that time he was 70�etter. Now we are doing the formula and Jesse after just 2 days is almost perfect again. No issues swallowing, no choking, still a wee bit of congestion in the throat, but overall he is smiling and laughing and very happy again!! Here is the link to the formula we are using
I think I covered most everything, school has started and Jesse is loving it as usual. We have a wonderful new driver for him that is keeping a very clean and nice bus!!! I like her attitude!! So for now we continue onward and just Thank God for all he brings us thru and pray that his blessings abound each and every day!
May God continue to bless you and your family as he is ours. Thank you for checking in on us, and please leave us message in the guestbook and let us you stopped by. We love knowing who cares enough to check in on us. Thanks again.. till next time.
Please check out the "How You Can Help" link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Tuesday, June 25, 2013 4:46 PM CDT
Hello friends and visitors,
I hope everyone is having a wonderful summer season and staying cool on the very hottest of days. We didn’t have much Spring here, but that’s not uncommon in Maryland. We had a very nice Mother’s day in May, my oldest son took me and his Mother –in law out for lunch/ dinner and drinks at The Texas Roadhouse. The food and times were very good! Hubby stayed home with Jesse giving me a wonderful day off, I pretty much had a full day off. That’s in itself was a treat, I love it when my hubby does that for me. Jesse’s teacher and staff put together a lovely picture of Jesse holding the letters of “LOVE” in 4 different pics and made a picture out of it for me for “Mother’s day” It will be treasured. May was a pretty good month overall, until Memorial day week.
Jesse’s regular nurse was on vacation for a full week and we had a wonderful substitute nurse. She trained 2 days with Jesse and his regular nurse and actually did a great job. But the heat that week was 90 Wednesday thru Friday. Upon coming home on the bus that Wednesday Jesse’s face was red as a beet and he was sweaty head to toe. The driver did run the A/C as required in his IEP. This is her first summer driving this bus and I have told her numerous times about the temperature control and A/C and why. I was livid over this, the next day the bus seemed a little cooler but the nurse said she kept turning it off and on and would not leave it on, had the windows open too. WTH?? 90 degrees and humid and no A/C. This same day a spot appeared on Jesse’s back right at his pants / diaper line on his waist, no bigger than my fingernail. By Friday it was a full blown boil, Saturday it erupted using warm compresses and antibiotic cream and by Sunday night we had raging fever of 103. I was keeping our doctor informed and we got antibiotics Monday morning. Things went well even though it was looking like Staph. Fever stayed down, redness was shrinking and it actually looked like it was getting better on Wednesday AM as it was healing and regressing in size, then he stopped eating and drinking Wednesday and the redness expanded and BP dropped to 55/32 from dehydration. The wound had stopped responding to the antibiotic after 3 days and we now had full blown staph with MRSA. He had MRSA (Methicillin-Resistant Staphylococcus aureus) is a staph that is resistant to commonly used antibiotics. Skin infections with MRSA often begin with an injury allowing the bacteria to enter the skin and develop into an infection. Vancomycin by IV was treatment of choice for a full week, followed by oral antibiotics for 3 more weeks which we are still on. Needless to say this landed Jesse in the ER and an admission to the hospital for more than a week, as well as surgery to remove the infection. We will not do anesthesia with Jesse as we do not want his airway collapse once the breathing tube is removed after a surgery, so fortunately we had one surgeon who was willing to do this with only a local.. this happened almost immediately after Jesse went septic his second day in the hospital while on vancomycin. He performed the surgery right there in PICU while I watched and prayed for both the doctor and Jesse. He did a beautiful job and Jesse was such a champ and still is about this whole thing. His wound from the surgery is quite large. You can read here how this wound started it was pretty much text book for us. MRSA
Father’s day was a good day, Jesse was home in time for all of us to celebrate as a family. His brother Stephen and his wife came over and brought lots of steamed crabs, and steamed shrimp over for dad’s enjoyment. We had a wonderful day sitting around the table chatiing and just being family and having fun. I feel blessed that all my men were here for yet another Father’s day and Jesse made it home strong and doing well. Another fight won.. Praise God! I won’t go into details, but it truly was God that brought him home, as 3 days before we left, another surgeon tried to delay our stay with something I did not feel was necessary. Praise God for shutting that door and not allowing it to happen!! It was a decision I alone could not make, only God could as he knows all! I trust him with all things.
In a couple of weeks Jesse and I head to Long Island with a friend from NC for a MPS Barbeque with many MPS families including a family from Ireland. We are excited about going and seeing some of dearest of friends. I missed two events while int eh hospital with Jesse, so this one will be our only big event this year for seeing other MPS friends and family. Pray for safe travels for us and a good time with all! Thank you! May God continue to bless you and your family as he is ours. Thank you for checking in on us, and please leave us message in the guestbook and let us you stopped by. We love knowing who cares enough to check in on us. Thanks again.. till next time.
Please check out the "How You Can Help" link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Tuesday, April 30, 2013 4:22 PM CDT
Hello friends and visitors,
It's been way too long since I last updated, (February) a lot has happened, so I will make the recall brief and short for each happening. A lot of the happenings have been on FB as they happened, so if you track me on FB, you are well informed. Jesse had been doing very well, laughing, smiling, visually better than usual, strong in his walking. Here is short video of he and taking a walk in March.
I couldn't be more pleased unless he was totally healed. We had our genetics visit in March, all went well, labs looked great, no issues, we did acupuncture in March and got more herbs to continue. This too went well. The Easter break from school was excellent too, everyone felt that Jesse gained weight while he was off school. I don't know about that, as he is at a pretty healthy weight anyway. Then the weekend of April 12th school sends home a letter that they have a case of scabbies in the school and the kids who were most likely to be exposed would be sent a cream to use provided by the health dept. Well Jesse's class was one of the classes exposed though we've not seen any scabbies. I hesitated to use it, as he reacts to everything even topically. The cream is called Permethrin Cream. I did a general search on side effects and it was quite common of most things.. so after a day and hearing about how hard it is to get rid of scabbies I thought I'd use it just on his neck and shoulder area. They wanted me to cover the entire body hairline to soles of the feet. I am so glad I didn't as I think Jesse may not have made it. Just with a wee bit of this stuff and he slowed down swallowing within 2 hours, then with 7 hours started having grandmal seizures and had 4 of these in less then 12 hours. It was horrible and it was literally killing him. No exaggeration here. This stuff is a "Neuro toxin" it is a pesticide!! Peremthrin < Read more about it here! Between the pesticide and the effect of having 4 grandmal seizures in such a short time, Jesse lost all ability to walk for a full week, could not swallow foods without totally pureeing, could not suck his drinks thru a straw. He had minimal truck control. Here is a video of his eyes from this poison.
I bathed him as soon as I could get him into a tub, I have been doing all kinds of detox with him and finally at the end of week 2 we are seeing an ocassional smile again, he is standing fairly well and walking with less support. His vision is still not great and his eyes keep rolling up to the right in his head quite often. Hopefully by the end of this week this will change more too. We are having his 18th birthday on May 4th, even though his birthday is May 2. We also got down to Fairfax, VA for a MPS fundraiser and gathering and got to see a lot of our friends. Jesse was far from himself, but we still managed to get some good pictures that didn't show how bad off he really was. Here is a slide show with pretty good pics 2 weeks after the dreaded cream.
The end of March I had a scare, still not sure what happened, but a possible mini aneurysm the doctor suspects. I got up on a Tuesday morning, feeling fine, headed for the kitchen to get coffee when all of a sudden my vision went dark, so I quickly sat on the floor not knowing what to expect next, when all of a sudden major pain started in my head, it felt like someone was sticking knives out of both sides of my head at my temples. Then my vision came back. This all happened in about 60 seconds or so. I have a high tolerance for pain, but this was so bad it was making me nauseated, dizzy and weak, so I grabbed 800 mgs of ibuprofen and went back to bed. Two hours later I was feeling weak but okay. So I slowly got Jesse up and the nurse and I got him ready for school and I drove them to school. As the day went on, I was cautious, but felt overall fine. I had been getting headaches off and on most of the fall this year. I rarely ever got headaches, and 3 weeks after this episode, I rarely get one now. So long story short, we have no medical coverage, and friends from the MPS community got together and pitched in enough money for me to see a doctor, get lab work done and CAT scans of my head. No sign of any bleeds or noticeable clots Praise God. I am waiting to get a detailed eye exam next. So with that said, I have been going back to the gym, and will be kayaking some this summer for recreation and exercise too. I have to say, that MPS family is the Best there is. There are so many of us, and if one has a need, there is always someone able to help. That's true selflessness and love of others!!! Thanks for stopping by, May 15th is MPS Awareness Day! Please take time to share our site, or one of the links below with a few friends if you would.
Please check out the "How You Can Help" link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Saturday, March 16, 2013 8:43 AM CDT
Hello friends and visitors,
Thanks for checking in on us! It's been a wonderful 5 weeks since my last post. Jesse continues to be happy and content for the most part. He did have 2 very mild seizures on Feb 20, the first ones of 2013. They were right on schedule actually. The amazing part was that neither seizure required administration of diastat. They were short (less than 2 minutes and not nearly as intense with the convulsions) So the assumption is that the diastat has relieved some intracranial pressure that may have been causing his seizures to be more intense. Then with that said, the following week he started laughing quite a bit. Gradually this laughing started getting out hand. By March 9, the laughing took the form of seizures. He could not stop and we’d see breathlessness and if eating he had to pause and not swallow for 20 seconds or less. So it was time for a re-evaluation of what might be causing this now. Jesse has never had gelastic or laughing seizures. We had a routine visit to the doctor for lab work and general discussion on March 4. (just a week prior to the laughing becoming seizures) and everything came back in very good ranges, no acidosis from the Diamox, all minerals looked good, and Oh yes, ALT's and AST's (these are liver markers) are back in normal range, so we can definitely attribute that to the Miglustat, as we have seen this in two other children recently that are taking Miglustat who have Sanfilippo Syndrome as well. Back to the laughing seizures, we still are not sure what caused these, I decided not change anything, but to ride this out for a short while. There were nights that I had to give him 1 -2 mgs of Valium to calm the laugh enough that he could sleep. We all need our sleep including Jesse. During the day I increased his TianMa, the Chinese herb that calms the central nervous system. I don't like to give these things everyday, as over time it causes too much suppression of his central nervous system. When that happens he can’t swallow as well, he gets all gurggly in his throat, his limbs become weakened also. So I choose when to use these things cautiously so not to suppress him too much. For whatever reason, as of March 13th, he has not needed any valium or additional TianMa. His system seems to have returned to his baseline normal. What happened? We can only guess. We have two new drugs (not supplements added to his regiment) The Miglustat being a SRT (substrate reduction therapy for what would be secondary storage build up in Sanfilippo) then the Diamox relieving intracranial pressure. Now the thoughts are that possibly with the change in intracranial pressure for the better, and then if miglustat is breaking storage material (GAGs) that has built up, possibly the GAG’s could be exiting thru his CNS fluid somewhere adding bumps in the road by causing a temporary pressure to a nerve here or there as it exits the body? That’s scenario #1, or could it be that the release in intracranial pressure is redistributing pressure somewhere else temporarily and the laughing seizures are a less intense seizure now that he will not experience vs those nasty grandmals? Intracranial pressure is always changing in your brain. This can even be the cause of migraines too, but most of us get over these things easily, unlike MPS children who have storage build up blocking the flow, along with increased white matter etc. Your guess is as good as ours, any of this in theory can be the answer, but we will most likely never know why, as we are not sedating him to explore and find out. Sedation is too risky. So with all of this, we’re back to a good normal base this week, Today as I write this, we are scheduled for acupuncture later today, then one more week of school before we have an entire week off for Easter. Read further down after the diamox post, about Jesse has a birthday coming up on May2.
• A few people have asked me how we go about dosing diamox for Jesse. Jesse weighs on average 105 - 110.. he varies back and forth. The dosing really doesn't go by weight as much as how much fluid might be being stored/blocked. In the beginning they prescribed up to 500 mg 2x daily, I only used 250mgs 2x daily initially. Then after about 4 days I started weaning down to 125mgs 2x daily for another week. Now I am able to get by with 75mgs on normal pressure barometer days once they set in for 24 hours, and when the barometric pressure starts dropping I need 125 mgs again, and I need that 2 x daily for however long that pressure is around until about 24 hours after it's gone. When the barometric pressure returns to normal and slightly high pressure for more than 24 hours, I haven't needed any diamox. The belief is that the barometric is causing symptoms similar but possibly worse than migraines, as the pressure builds in the head due to some blockage in the CNS pathway in the brain during these low barometer days. It's proven time and time again that weather plays a part in migraines, Intracranial Hypertension and hydrocephalus. Which of these things is the culprit for Jesse, I don’t for sure, but combined with other symptoms and issues he has, I would speculate at very least Normal Pressure Hydrocephalus. Diamox is the least of the invasive things to test this theory and if managed correctly at lowest doses, the risk of metabolic acidosis in minimal. We are suspecting as summer approaches I will need it even less often, and then need it again more frequently come Fall again when those low pressure weather fronts roll thru consistently. Here's a link below that you can type you zip code in and watch barometric pressure for your area hourly and get an idea if the pressure is stable, rising or falling. Low barometric pressure is 29.80 and lower, Normal barometric pressure is 29.80 - 30.20, and high barometric pressure is 30.20 and higher.. it's the low ranges of normal and low barometer that cause the issues in the brain. They also say any fast change in weather can do the same no matter what the pressure. So for Jesse, it seems any barometric below 30.0 seems to cause him discomfort and agitation. Now that he's on the diamox he doesn't seem to need as high a dose as he did initially. The stuff works usually works within 24 hours and for us results happened overnight; by 2 doses he was perfect. . Weather.Gov. be sure to type in your zip code for the readings in your area, the "altimeter" readings are the numbers to watch. Sometimes humidity plays into the pressure as well, especially during high barometric readings with high humidity. Then we may need a low dose maybe 75 mgs of diamox on avg. Here is a picture of the weather station I use at home. I use the globe with the blue water to check barometric pressure; it gives me a 6 – 8 hour head start on the local actual weather. This first picture is of a day when diamox is needed. A low pressure day, the water is higher up in the side spout
>
This next picture is a Normal pressure day,the water is much lower in the spout, border line of needing diamox, so we give a very low dose or none at all on these days.
on high pressure days all the water is in the globe and none in the spout.
I have a few things to get in order that are stressing me. The first being that Jesse will be 18 years old on May 2 and we need to file for guardianship for him in order to be his spokesperson for all his medical and any other needs. Otherwise the state has authority to appoint someone else to do this. No way…. No one from the state would have a clue of what Jesse could handle medically or otherwise. Not to mention I’m his mother and he’s my child and I just can’t allow some strangers to take over my child. I love him too much to allow that. This requires a lawyer according to everything I've been told and read so far. While checking into this, I am finding out the average cost for a lawyer for these services are about $1200 - $2000 depending on who it is. Money we do not have. Now another source has told that if I can’t afford one (which I can't) that the court would have to appoint one for me? I have no idea if this is fact or not, so my next step is to try and get to the court house next week and find these things out. Number two on my list is birthday parties. I am becoming more and more stressed on this issue. I have options, as Jesse has three cousins turning 18 also and the four of them are all born within 2 months of each other. We were all pregnant at the same time. Kind of cool! There is talk of having one big party for all of them. Sounded great at first, but as my mind starts thinking about it, I'm not sure I can handle this emotionally. The other three all being successful typical young adults now, and Jesse being Jesse. I just don't know that I could be there in celebration with them all and not fall apart. I love Jesse for who he is, and have no regrets, but with a day of celebration of the others turning 18, talk of what colleges they applied for or been accepted too, the sports, music and so on that will be talked about, well honestly, I will have nothing to talk about, only tears that Jesse can’t do these things. So I am thinking this may not work out for me. I can be happy for the others, and I truly am, but I don't think I can handle it in the same day I celebrate Jesse’s life. It's just not the same. I am thinking of however having a party (and if so it will be on Saturday May 4, here at my house, or my son's new house. I am leaning in the direction of my own house, especially if other MPS families come. I have more toys here, a play system in the yard for kids etc.. It will also be my sister who lives in Florida's birthday as well, she and Jesse share birthdates, and mine is on April 30, just 2 days before. We've always celebrated together when she lived her in Maryland before retiring to Florida. When she informed us that she was coming up and would be here that weekend, it excited me to think we could have all of us together for a birthday again, and how fitting for it to be Jesse's 18th birthday. Jesse would be the main celebration of course, not my sister and I. This is one birthday we thought he’d never see based on his diagnosis. So at this point if all the $$$ fall into place and nothing adverse happens between now and then, save the date May 4th for a birthday party at either my house or my son’s house just 5 miles north of me.
As for me personally, I've been little busy. (good busy) A friend of mine bought a groupon deal of buy one massage give one to a friend for a good low price. I was that friend. On February 21, I thoroughly enjoyed an awesome swedish and deep tissue massage for an hour. My body felt wonderful for the next two weeks. I have learned that when I get rich, that I should have one of these every 2 -3 weeks!! Then the end of the month, I was able to go to DC for part of The Rare Disease Days happenings. My first night down was for the “Cocktail Reception” and for the viewing of the movie “Here us Now”, an awesome presentation from another family and professionals on getting thru daily life and finding a treatment and hopefully a cure for their two children with a Rare Disease. The food, drink and socialization was awesome. My older son's mother in law went with me, and we had a great time. Later in the week I was able to go during the day for a few of the speakers and presentations being done at the NIH in Bethesda. All of this was such a treat for me, as it was all free, and being around other families with similar issues and the professionals doing research and the drug pipelines etc, had me feeling so in my place of comfort. Many people don't understand how that would be a place of comfort, but when you have child with a rare disease doctors don't know everything about every disease, there are over 7,000 of them. It takes being an active parent, learning about the terminology used in the research and medical fields, understanding the metabolic pathway that is effecting your child, and then if we're blessed with enough wisdom and vision, we will find things to help our children along this journey and hopefully one day a cure for those other children later. If we don’t try to save our own children, the children in the future will have no hope. It takes years to even find a therapy and get it thru the NIH, Pharma and FDA pipelines, a minimum of 10 years in most cases. A child with a rare disease does not generally have 10 years to wait. So for me this was genuinely an enjoyable week.
r>
We also have many MPS and Sanfilippo events coming up this spring and early summer. Some are fundraisers and others just social events. So Jesse and I will travel up and down the mid - atlantic region from New York to Virginia and in between to be at as many of these events as possible to support and meet up with other families and friends. If you are interested in attending any of these or donating to any of the causes, they are promoted a lot on FB, just go there and friend me on FB (Patty Burkholder Taormino) I will gladly accept you and you can follow the events and socials as we promote them.
Please check out the "How You Can Help" link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Friday, February 8, 2013 12:38 AM CST
Hello friends and visitors,
It’s been a wonderful month since my last update. Jesse is thriving on the Diamox and Miglustat combined. His mood had been happy, no agitation, lots of smiles, and trying to interact verbally at times with his wonderful noises and laughter. Back in November Jesse was having some strange eye moments with his eyes rolling upward and to the right and fixing there momentarily. This has also ended since the start of Diamox. There is a lot of evidence that intracranial pressure on certain cranial nerves (nerve 3 – 6 mostly it seems) can cause many issues with the eyes from movements to blurred or blind vision. Here’s one manual on nerve palsies this one relate to the sixth nerve, but from this link you look at all the nerves in the brain and see what can happen. Sixth Nerve A few other families are using Diamox now as well and having good success also, and another few are using miglustat and seeing liver enzymes return to normal and a reduction of GAGs just using a very low dose compared to what they use in Gaucher. The dosage has usually been in the neighborhood or 12.5 - 25 mgs. 2x per day or whatever the bowels will tolerate. Some other improvements have been overall strength, eye contact, another child is singing and laughing appropriately again, another child has had cognitive gains on testing. So every child is different, but the joy and happiness seem to be common in all the kids trying it so far. Back to the Diamox.. for anyone who tries this for unexplained agitation and behavior that can’t seemed to be resolved, please be sure to add electrolyte water to the diet with all your childs drinks or purchase a supplement called “Cell Food” to add to their drinks each day and have your doctor do labs to monitor your child regularly. Hydration is important when taking a diuretic like Diamox.
I was quite busy this past month, here's a short wrap up of my month. I got to go my nephews wedding party and actually got dressed up for a change. That was a lot of fun and a truly enjoyable RARE day out. I also testified before the senate committee about the importance of Rare Disease Day and asking Maryland to designate the last of February as Rare Disease Day. Then of course Super bowl activities and a visit from a friend in Georgia. Here’s a brief slide show with a few pics
Anyone who keeps up with football, you know we are true Raven’s fans here at our house. Jesse has always loved football and still does, so we’ve been making a big deal over the playoff games leading up to the Super bowl and of course the Super bowl as well. Another MPS mom (Jodie) who is from Georgia, was in town for a few days for continuing education for her job. She arrived on Superbowl Sunday, so of course I had to have her over for dinner and the game. It was great to meet another MPS mom that I know so well on the internet, now I know her in person too. I can’t wait to meet her daughter one day. Praise God.. Ravens won the Super bowl and it’s been celebration time in Baltimore ever since it seems. Purple pride has gone wild!! Jodie and I also got to go out for a girls night out to dinner on one of the nights she was here. We did a driving tour around the east side of Baltimore thru the Inner Harbor, Little Italy, Fells Point and Caton neighborhoods, had dinner then went on a short tour thru the Johns Hopkins area and then some public housing, LOL!! It’s been a wonderful month again as I said in the beginning. There are some pictures in the slide show of the Super Bowl celebration below I will share with you! Thanks for stopping by. We love our visitors!!! Please keep MPS families in prayer as so many are having issues this winter, mostly respiratory problems and seizures. Thank and may God Bless you richly!!
Super Bowl Celebration in Baltmore
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Thursday, January 10, 2013 9:43 AM CST
Hello friends and visitors,
It’s been a long time since I did a full update, but things have been overall good and I have been enjoying every minute of it instead of being on the computer. It takes about 2 hours on average for me to really do a full update. As I last reported we had an eye appointment shortly after the genetics appointment and his eyes do have optic nerve degeneration. I have learned that long time exposure to high pressure can contribute to this. So I do believe Diamox will be a good thing for us. Jesse has been on it now for about 7 weeks. We have played with dosing off and on, and it seems that the lower doses are working well for most days. My concerns are keeping the high pressure down, but NOT allowing it to become LOW PRESSURE. This will be a slightly tricky situation. It will take lots of observation of Jesse’s behaviors. It seems that LOW Pressure headaches become severe when the patient is upright and quickly disappears when the patient is lying flat. Thus, the headaches are typically absent first thing in the morning and start or worsen shortly after getting out of bed. The pain is often worse at the back of the head, and may be accompanied by some neck discomfort and nausea. Rarely there are more serious neurological symptoms caused by stretching nerves or the downward displacement of the brain. So it’s important to not let low pressure be an issue to protect the nerves from stretching downward too much. If I should notice that he is exhibiting sign of low pressure, then it’s best to increase fluids and add a wee bit of caffeine possibly, and of course rest, not running around too much. Now the opposite, High Pressure/ Idiopathic Intracranial Hypertension, (which is what we are treating for) has different symptoms and causes. Certain medications can predispose individuals to symptoms, including the antibiotic tetracycline, steroids (as they are weaned off) and excessive amounts of vitamin A are most common reasons. Then having MPS is just another predisposed reason. With high pressure or hypertension, headaches may be dull, are often at the back of the head, and tend to be worse at night, especially when trying to lay down, (headaches may lessen in an upright position) or first thing in the morning. Over time, symptoms become constant. Patients may suffer from temporary episodes of visual blurring or even blindness. If the pressure continues to build up, the nerves affecting eye movement can cause double vision or slowly deteriorating vision. This is what I am suspecting has been going on with Jesse for over 3 years now, and seemingly worse in the Fall / Winter months with episodes in the Spring that are short lasting, My suspicion is that allergies are triggering changes in pressure for him.
Since he’s been doing well on the Diamox, we have just started back on Miglustat / Zavesca as well. We are seeing some wonderful therapeutic results in a few of our kids on a very low dose. Including Jesse when I had him on it before the Fall allergy issues began. Now that I have the allergy issues under control for the most part we going to give it another try. So for now this is it on the medical update..
Jesse was off school from the Friday before Christmas until January 7th. We didn’t have any real child care for the holiday break, so I spent most of my days with Jesse. He was in excellent spirits and behaviors. We traveled about 40 minutes to my mom’s on Christmas eve and spent a nice evening with family there, the Christmas day we had brunch with my son Stephen and his wife and her mom. That too was very good; they did a wonderful job cooking! They also gave Jesse, Jack and I Santa gifts, which were a total surprise. From there we drove nearly an hour to spend the remainder of the day and early evening with all of Jack’s family at his sister’s house. Jesse did so well in all of his travels. No behavior issues, no agitation at all. It made the holiday extra special.
We didn’t have any real plans for New Year’s Eve, we usually stay home. It’s good that we didn’t as Jesse woke at 5:20am with a big seizure, (right on schedule with 6-9 week span he usually goes before having one) He recovered very well, was up at 1pm. Eating wonderfully, walked with support to the living room and sat with us in there. He was actually laughing and watching Dick Clarks Rockin’ Eve with us when Jason Aldene’s band was playing, he started to laugh, then boom.. at 8:50 pm another seizure. He did not recover as well from this one. It took most of the week for his recovery.
He is back school now and has done well his first days back. Monday and Tuesday were exceptional, but by Wednesday I could tell he was getting tired out. So I think it will take a week or two to get him back into the routine. Below are few pictures from the holidays at various places. Enjoy!!
Thank you for all the Christmas Cards that you sent, we truly enjoyed each and every one of them. Hopefully next year will be better and I will get cards out again too!
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Tuesday, November 27, 2012 8:04 AM
Hello friends and visitors,
Well, I wanted to update sooner, but we’ve been on a roller coaster ride to say the least. We had about 7 good days after Jesse’s swallowing improved from giving the amino acid spray. He started with watery red eyes, agitation again, appears to be migraines and not ruling out IICP. We can’t do much about IICP if it is this causing the current issues. Everything started a day before Thanksgiving with him getting extreme with hyperventilating, tapping and arm swinging, head tossing and just plain frustration for him. I increased ibuprofen, tried a few other headache and allergy meds. Nothing really helped for more than 2 hours at a time. I am beginning to wonder if the Chemtrails that the govt. is spraying over our heads are causing these issues. They sprayed here heavily for 3 straight days just before Thanksgiving. I will be watching this more and more to see if him getting worse each time corresponds to spraying within a few days after they spray. He was still sleeping pretty good up until this past Sunday night. Sunday the 25th he was out of control the better part of the day and stayed that way all night. He usually goes to sleep with just 1.5 mg of melatonin, but it took 6mg to get him down and then he only slept 1.5 hours. The head shaking and arm swatting and hyperventilating all started again. I tried lying down with him and calming him, but after 90 minutes I finally gave up and gave him 2mg of Valium. It put him back to sleep, but for only an hour. He was up for the rest of the day until bedtime Monday night. We saw genetics on Monday, (yesterday as I write this) and we’ve discussed a lot of things. His eyes will be checked again on Dec 4th to be sure there is no papilledema or anything else going on that is eye related. We are also going to try Diamox in case he is having a mild ICP Click on ICP to get a little more info on this topic. For now we are just moving about day by day, trying to keep Jesse happy and not agitated, even yesterday Jesse had bad moments but compared to Sunday and the entire early AM on Monday, his day was quite good in comparison. We’re hoping we can improve him again as each day goes on. I can truly say I love my genetics doctor. She is awesome and really respects trying to keep Jesse comfortable and trying things that might help. She also reminds of high risk issues if I should suggest trying any of them with Jesse being this age and the progression he has with Sanfilippo. We make a very good team for Jesse.
On a better note, during Jesse’s very good week he got to go bowling with his class, they had a great time. Below are a few pictures. I’m so glad my little man still gets to enjoy things in life. Wednesday he starts swimming. He hasn’t done this in years. I am looking forward to it as the pool is heated for therapeutic purposes.
DECEMBER 6th-I mentioned above that Jesse started swimming this week, and the staff asked if I would get in with him these first few times, so I was honored to be able to get in the nicely heated pool. I can actually do this quite often I have learned. Here are a few pics of our first time in. It was quite relaxing for both of us!
I also wanted to let everyone know, I will not be sending out Christmas cards in the mail this year, the funds are not there for cards or postage. I will try and get e-cards out. I know it’s not as personable. I too prefer real cards. They are so pretty and really help to decorate the home too. So please forgive me for not sending this year. I do love each and every one of you that come here to read and care about Jesse.
Have a Blessed Christmas just in case I don’t get to update before then!
A few people have asked what Jesse wants or needs for Christmas, so I have gone thru some sites and found things that he would enjoy or need. As always gift cards are always welcome too.
There is one expensive item, and that is the older large IPad, it can be a used one that someone had and doesn't use anymore. With Jesse's vision,the mini would not be very good.
P.S. I am still looking for some part time work for about 3-5 hours 2 -3 days a week if anyone knows of someone looking for help, it can be errands, house cleaning, front desk work, greeting people, raking leaves, etc. I prefer cash pay as not to interfere with Jesse’s benefits. We are just under the income level for him to receive MA and without that he would not have medical coverage. If the distance is more than 10 miles on way, I would have to include gas fee as well. Thanks in advance to anyone who can use my services!
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even 5.00, 10.00 or 20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Tuesday, November 27, 2012 8:04 AM CST
Hello friends and visitors,
Well, I wanted to update sooner, but we’ve been on a roller coaster ride to say the least. We had about 7 good days after Jesse’s swallowing improved from giving the amino acid spray. He started with watery red eyes, agitation again, appears to be migraines and not ruling out IICP. We can’t do much about IICP if it is this causing the current issues. Everything started a day before Thanksgiving with him getting extreme with hyperventilating, tapping and arm swinging, head tossing and just plain frustration for him. I increased ibuprofen, tried a few other headache and allergy meds. Nothing really helped for more than 2 hours at a time. I am beginning to wonder if the Chemtrails that the govt. is spraying over our heads are causing these issues. They sprayed here heavily for 3 straight days just before Thanksgiving. I will be watching this more and more to see if him getting worse each time corresponds to spraying within a few days after they spray. He was still sleeping pretty good up until this past Sunday night. Sunday the 25th he was out of control the better part of the day and stayed that way all night. He usually goes to sleep with just 1.5 mg of melatonin, but it took 6mg to get him down and then he only slept 1.5 hours. The head shaking and arm swatting and hyperventilating all started again. I tried lying down with him and calming him, but after 90 minutes I finally gave up and gave him 2mg of Valium. It put him back to sleep, but for only an hour. He was up for the rest of the day until bedtime Monday night. We saw genetics on Monday, (yesterday as I write this) and we’ve discussed a lot of things. His eyes will be checked again on Dec 4th to be sure there is no papilledema or anything else going on that is eye related. We are also going to try Diamox in case he is having a mild ICP Click on ICP to get a little more info on this topic. For now we are just moving about day by day, trying to keep Jesse happy and not agitated, even yesterday Jesse had bad moments but compared to Sunday and the entire early AM on Monday, his day was quite good in comparison. We’re hoping we can improve him again as each day goes on. I can truly say I love my genetics doctor. She is awesome and really respects trying to keep Jesse comfortable and trying things that might help. She also reminds of high risk issues if I should suggest trying any of them with Jesse being this age and the progression he has with Sanfilippo. We make a very good team for Jesse.
On a better note, during Jesse’s very good week he got to go bowling with his class, they had a great time. Below are a few pictures. I’m so glad my little man still gets to enjoy things in life. Wednesday he starts swimming. He hasn’t done this in years. I am looking forward to it as the pool is heated for therapeutic purposes.
I also wanted to let everyone know, I will not be sending out Christmas cards in the mail this year, the funds are not there for cards or postage. I will try and get e-cards out. I know it’s not as personable. I too prefer real cards. They are so pretty and really help to decorate the home too. So please forgive me for not sending this year. I do love each and every one of you that come here to read and care about Jesse.
Have a Blessed Christmas just in case I don’t get to update before then!
P.S. I am still looking for some part time work for about 3-5 hours 2 -3 days a week if anyone knows of someone looking for help, it can be errands, house cleaning, front desk work, greeting people, raking leaves, etc. I prefer cash pay as not to interfere with Jesse’s benefits. We are just under the income level for him to receive MA and without that he would not have medical coverage. If the distance is more than 10 miles on way, I would have to include gas fee as well. Thanks in advance to anyone who can use my services!
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Thursday, October 11, 2012 9:00 AM CDT
Hello friends and visitors,
Well we had a good summer overall with the Chinese herbs keeping Jesse’s system in check. The vision issues are not consistent though, nothing much is helping on that front. He went back to school the last week of August and was doing well, then on September 15th.. A near repeat of last year that started nearly the same day. Jesse had become agitated, panting and gasping for air it seems, flipping his head all over and just lots of discomfort. His 02 levels are fine thankfully. So we started sinus rinses, as we know he has ragweed allergy and it is that time of year now. We started using natural antihistamines as OTC ones cause him not to be able to walk. No real help with any of this, I then tried B & T cough and bronchial syrup as it seemed that post nasal drip is pooling up in his throat and won’t go down. So the B & T thins mucus. We also are using his inhaler to try and reduce any inflammation in the airway. Nothing and I mean nothing is working. The only good thing is that 02 levels are good and by bed time he is so tired, he does sleep, as do I. So…. I called my doctor of Chinese Medicine who is also an acupuncturist, and made an appointment with him. We saw him on October 8th. After one 30 minute acu treatment, Jesse was much calmer and breathing easier. Then the doc custom blended some new herbs to help with allergy and to open the airway. (a combination of two formulas plus 1 other herb). He got his first dose at 3pm that day, and within 2 hours I could see a difference. It is now 3 days later and his symptoms are highly improved to where he is at least comfortable 90f the day and all night. It does not surprise that the Chinese herbs work so well, whereas modern medicine does not. With this being a lysosomal storage disease and the cells not getting rid of the garbage in them, it only makes sense to put only natural things in the body to heal and restore it. I am just Thankful that we live in an area that has so much to offer in access to alternative medicine. Many of our friends that I’ve met in the MPS community don’t even have access to an organic store or a good vitamin shop. So we are truly blessed with these accesses.
So for now, the Fall season is just getting started and Winter is fast approaching. I feel we are ahead of the issues that Fall and Winter seasons test our children with. Please pray that we can stay ahead the issues and have a healthy season. Thank you!
Jesse's class went to Weber's Farm for a fall trip on Monday October 22. Here's a few pics from the trip, I didn't take any of the animals, the camera battery was low, so I wanted to get as many of Jesse as possible.
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Thursday, October 11, 2012 9:00 AM CDT
Hello friends and visitors, Well we had a good summer overall with the Chinese herbs keeping Jesse’s system in check. The vision issues are not consistent though, nothing much is helping on that front. He went back to school the last week of August and was doing well, then on September 15th.. A near repeat of last year that started nearly the same day. Jesse had become agitated, panting and gasping for air it seems, flipping his head all over and just lots of discomfort. His 02 levels are fine thankfully. So we started sinus rinses, as we know he has ragweed allergy and it is that time of year now. We started using natural antihistamines as OTC ones cause him not to be able to walk. No real help with any of this, I then tried B & T cough and bronchial syrup as it seemed that post nasal drip is pooling up in his throat and won’t go down. So the B & T thins mucus. We also are using his inhaler to try and reduce any inflammation in the airway. Nothing and I mean nothing is working. The only good thing is that 02 levels are good and by bed time he is so tired, he does sleep, as do I. So…. I called my doctor of Chinese Medicine who is also an acupuncturist, and made an appointment with him. We saw him on October 8th. After one 30 minute acu treatment, Jesse was much calmer and breathing easier. Then the doc custom blended some new herbs to help with allergy and to open the airway. (a combination of two formulas plus 1 other herb) . He got his first dose at 3pm that day, and within 2 hours I could see a difference. It is now 3 days later and his symptoms are highly improved to where he is at least comfortable 90% of the day and all night. It does not surprise that the Chinese herbs work so well, whereas modern medicine does not. With this being a lysosomal storage disease and the cells not getting rid of the garbage in them, it only makes sense to put only natural things in the body to heal and restore it. I am just Thankful that we live in an area that has so much to offer in access to alternative medicine. Many of our friends that I’ve met in the MPS community don’t even have access to an organic store or a good vitamin shop. So we are truly blessed with these accesses.
So for now, the Fall season is just getting started and Winter is fast approaching. I feel we are ahead of the issues that Fall and Winter seasons test our children with. Please pray that we can stay ahead the issues and have a healthy season. Thank you! P.S. I may be looking for some part time work for about 3-5 hours 2 -3 days a week if anyone knows of someone looking for help, it can be errands, house cleaning, front desk work, greeting people, raking leaves, etc. I prefer cash pay as not to interfere with Jesse’s benefits. We are just under the income level for him to receive MA and without that he would not have medical coverage. If the distance is more than 10 miles on way, I would have to include gas fee as well. Thanks in advance to anyone who can use my services!
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Friday, August 17, 2012 8:34 AM CDT
Hello friends and visitors,
Jesse has been off school for most of August and we haven’t really done a whole lot, just day to day same old stuff. The days that the weather is not too hot, (which has been many fortunately) we’ve been out walking and swinging on the swing, gliding on the glider and so on. We haven’t been on a vacation in some time now, but that’s okay. My favorite vacation I think is just sitting on a hotel balcony on the boardwalk at Ocean City, Maryland and watching the people go by, and then occasionally going out and walking the boards to get a cannoli, pizza, funnel cake or boardwalk fries. Jesse used to loved playing in the sand and throwing it on us, and playing miniature golf too, he would scream every time we had to leave miniature golf, LOL! We have some great memories!!
Jesse is doing well on the Chinese herbs for his liver and issues that stemmed from this. Some of the issues were cold knees and feet, red face often that went away at night while sleeping but got worse as the day went on, then eventually spasms in his right side that caused him pain. After many scans, ultrasounds and tests, no one could come up with answers. The acupuncturist led us in the right direction. Here is a link about the liver in the terms of the “Classical Chinese” theroies The beginning may seem a bit ??? if you’re not understanding the language, but keep reading as it gets very interesting even to the lay person as you move down the teaching. LIVER Since our kids have storage acculamation in the liver and spleen almost immediately, this all made great sense to me. Since we have his initial problems under control we are now working on his vision. We are trying one herb at a time with his current formula to see if we can get one to help reverse the vision issues. His current formula is basically this one Tian ma Gou teng yin with a modification that includes a pinch of Earthworm This helps to move the formula in the crevices of the organs to get it where needed. We tried the formula without this and he didn’t have spasms in his sides, but still seemed a bit agitated at times, so we modified it. This modification has done well enough that we’ve even been able to decrease the amount also. We’ve tried one added ingredient to assist with vision, but over nearly 60 days we have not seen any changes, so this week we’ve started a different one to add. It is called Privet Fruit This can used in both excess and deficient types of eye disorders and safe to use with the other herbs he’s one as well. I shall let you know how this one goes in the next 30 days or so. So for now, Jesse is still stable and doing well. He sleeps well, eats well, is still enjoying his walks and playing with his toys. He likes getting out whenever we can to go places. School starts back again at the end of the month, so I know he will be happy about that. He will not be quite as bored I’m sure.
Jesse’s name is center just over the words “BEAT MPS”!
The Climb of Mt. Kilimanjaro went well. Carl and his friends did an amazing job climbing Mt. Kilimanjaro and taking the “BEAT MPS” Flag to the top. It’s still not too late to donate; you can Text CLIMB to 72727 and it will send you a text back to ask how much you wish to donate. It’s very easy. THANKS TO CARL AND HIS FRIENDS for doing this!! This took months of training due to the altitude and the climb itself. Not an easy task!! You guys Rock!! Here a few pics from the climb.
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Thursday, July 5, 2012 1:17 PM CDT
Hello friends and visitors,
Jesse has been doing overall well since my last post. We had one last field trip before school ended and it was to Camden Yards Stadium, home of our Orioles baseball team. The tour guides there fabulous. They really gave special attention to the vision issues of our special children and allowing touching of many things that others may not have had the opportunity to. Below is a slide show of some the pictures there.
July 20, FINALLY LOADED A SLIDE SHOW!! We also had a great time this year with the celebration of the War of 1812, the event was called Sailabrition. Tall Ships from all over the world were here, the Blue Angels did an air show 2 days here, huge Navy ships were here and lots of activities for the entire week! Okay Patty finally made a slide, here it is!
Father’s day went well, we had our favorite crabs, steamed shrimp and potatoes etc.. basically a repeat of Mother’s day, but with dad being celebrated. Thank you Lord for a wonderful adult son who treats us special.
Dad and Jesse on their new glider for Father’s day.
I also want to tell you about a huge fundraiser that one of the Sanfilippo dads is doing. He will be climbing Mt. Kilimanjaro from August 3rd thru August 12th to raise funds for our Team Sanfilippo Foundation for research. He has been training for the altitude adjustments and the climb now for a while. Please check out his letter and follow the climb at Climb For Cure you can donate also by texting CLIMB to 72727. Please spread the word among your friends as well, this will be our largest fundraiser this year I think. we really need you help in donations.
One June 24th, Jesse amd I along a grilfriend of mine made a day trip to Sellersville, PA to support Jeremy Mask and his family in their event “Concert for Cure for MPS”. It was their 2nd annual concert event and it went very well, 6 MPS families attended from as far south as Virginia to as far north as upstate New York. The bands and their fans we super, the vendors had great things to sell. What a day!! The location is fabulous for those hot summer days, as it is in a grove near a stream with lots of trees!! Plenty of shade and atmosphere and covered pavilions with tables as well. A definite event you should consider for next year. Below is a short video I made, the other families have so many cool pictures on FB as well.
Jesse was just 4 days past triple grand mall seizures on this day, he did remarkably well.
Jesse is doing well on the herbal formulas, we did run out of one his supplements 4 days before I was seeing the acupuncturist / herbalist and on day 3 of being out he had 3 grand seizures.. it was awful. I rented a car in order to get him to the Doctor of Chinese medicine, as my car did not have A/C and it was way too hot to travel an hour one way. I ended up keeping the car the entire weekend so I could make the 2.5 hour drive to the concert on the 24th as well. The acupuncturist did quite a few needles in Jesse for treatment, which helped him recover even better than usual. We discussed how he was on the first month’s formula and revised the new one a wee bit to try and help his eyes a little too if we can. He also fixed up one for the congestion he sometimes gets in his throat as well to use as needed. So we are now evaluating this formula and most likely will revise it in a month’s time as we see systems change. The liver and digestion seem to be doing well, as we have not had any spasms and he is eating his normal diet with fats etc. Jesse will go back to school for a month starting next week, then off again most of August. The heat has been horrible, so our activities have been very limited. Thanks for checking in and sign our guestbook and let us know you were here!! May God Bless and keep you all!!
Added on July 25,2012 This testimony from Kelly and Jake Hubert is awesome, but also get your kleenex out as well. Such a wonderful display of faith and hope. So nice to see this kind of faith among a young family! Saints and Sinners click on week two. Also check out their website as well at Livlife
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!! We will Survive!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Wednesday, May 23, 2012 8:49 AM CDT
Hello friends and visitors,
It’s been way too long again since my last update. I’ve been quite busy and Jesse has actually been very well, Praise God for access to his wisdom again! In April I had the opportunity to meet with a world renowned Master of Chinese medicine on behalf of Team Sanfilippo Foundation. I took the train to NY after doing several emails about sanfilippo in general and about the most common things that happen with our kids. Then once in NY I had a 1 hour consult with him about Sanfilippo Syndrome. Since each of our children are so different in many ways yet similar in others, each child’s treatment would vary somewhat in what he would recommend. But he did have a few things to say about general issues with our kids as they get more advanced into the disease based on Jesse’s issues and few others approaching his age that are having issues of one type or another. Here is what he said wrapped up in a few short paragraphs.
“To recap our conversation, from my end I felt it important to stress that while herbs may seem to be good on paper, their appropriateness must be judged on a case by case basis. That is, there are herbs that help sleep at night or address cramping and muscle spasms, but some will be 'hot' in nature, attaining cure by warming and softening the system while the other will do the same end result but is 'cold' in nature and does so by relaxing the system and taking the edge off. Thus, the skill will be in identifying whether the child needs not an herb that helps sleep, but to be cooled or warmed, and then selecting a sleep herb that matches the need. Otherwise, the specific herb will be beneficial to some who happen to fit the profile, but might aggravate the condition of those with the opposite profile.
From our conversation, the general patterns you are seeing with SFS are what we call a Liver Yin deficiency syndrome and an accumulation of damp-phlegm in the body. On top of that will be the patterns of disharmony that also manifest in each child, making each child unique despite having the same syndrome. All this must be taken into account along with the very important point Patty shared with me, which is as long as the GI tract is happy, the children seem happy. From these four perspectives, we can work on creating a balanced herbal regimen that should produce obvious improvement in day to day life in each child if we get the combinations right.
I look forward to working with you on an herbal regimen for individual children if you choose. As I said, I am very interested in this kind of medicine, so I will put great effort behind this should you wish to commit to working together. It will take great patience as we learn what works and does not for Jesse specifically and then other SFS children in general.
So we this we have devised a custom formula for Jesse and I am working with a local acupuncturist as needed also. He too is a Master of Chinese Medicine and a 2nd generation acupuncturist. So I feel well taken care of in respect to alternative medicine for Jesse. We will be doing labs on Jesse more toward the end of this month or early June.
I also had the opportunity to go back to Fairfax, Virginia and meet Kathy Buckley and her son Matthew. (what a doll) He is still super active at 12 yrs old and really huggie as well. We met with the 2 doctors there and their staff in reference to this facility being a treatment center and trial center for treatments for Sanfilippo. They already are for several other lysosomal storage diseases. So hopefully Shire will add this facility to their list for the mid-atlantic region.
Also on a personal front, many of you know I became unemployed in mid-February. Well The first of March I joined a gym on a short term basis for 8 weeks of weight loss challenge. Good news is that lost 20 lbs in the eight weeks and put me in the first for the completion. So I won a small amount of cash and 3 personal trainer sessions, so my winnings will pay for 2 more months or gym membership. I have truly enjoyed being able to do something for myself for a change!! The weight loss has been blessing as I feel so much better with 20 lbs gone. I hope to be able to lose 10 more lbs in the next 2 months. That will put me at the goal weight I would like to be at.
Mother's Slide Show
We had a wonderful Mother’s Day a week after (we waited until my weight loss challenge was officially over) It was a fabulous day. The pictures above show all the smiles.
Jesse has wonderful days these past two months. Below are a few videos and also a slide show of his school trip to M & T Bank Stadium (the Ravens Stadium).
Please check out the “How You Can Help” link in the top half of the page. If there’s anything you can do to help, it is appreciated in these hard times again.
Love to you all and thanks for checking in on us!!! We will Survive!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Monday, March 12, 2012 9:31 AM CDT
Hello friends and visitors,
I’m sorry it’s been a while since my last update, but time has been limited while caring for Jesse thru these troubling times. We’ve been doing a very comprehensive liver cleanse for just over two weeks now. This came about after going to acupuncture a few weeks back. We went for his leg pain after the orthpedist aggitated it severly. Also during that time his face was getting red and rough and staying that way for the 4th day by the time we went to acupunture. The day we went his hands had actually turned red as well. I asked the acupuncturist about it and he felt his pulses, checked his feet, and said it's liver congestion. The flow is being blocked. He inserted one needle in the outter calf and another in front of the inside of his ankle where it's soft. I sat and watched as the red and the heat left his face and hands and his feet warmed up, it took all of 3 minutes. AMAZING!! (we started with a mild generic liver cleanse previously, that didn’t do much) The more aggressive one is helping it seems, we’ve been 2 weeks with no spasms in sides and no red face or hands, BUT… we’ve had 2 seizures with this. Two of the herbs in the cleanse can aggravate seizure disorders. (Rosemary and Shisandra) Shisandra can also trigger ICP, which I have been watching for signs of as well. So as of Monday 3/12/12, we will discontinue this cleanse, give him and break and see what happens next. Jesse’s weight seems to have stabilized as well. He is under weight, but not losing any additional weight. So this is a good thing. In Late April or first of May we will redo many of his blood works to see if there are any changes after all the cleansing.
Added March 16th - I had to come back and add this short video. Thursday March 15th, the laughter and bright eyes are such a blessing. This continued all evening, and he woke up the same way this morning. So joyous!!
He had been doing very well with his leg pain for sometime now. We saw the orthopedist at the end of February and he just had to rotate his leg all around and check his range of motion. Well he really agitated the leg and Jesse was worse than he’s been for several years on it. Why do docs have to do these things? It took two acupuncture treatments, daily PT and traction to get his leg doing reasonably okay again. He would just stand or sit in the living room and yell, he was no comfortable sitting or standing anywhere. Praise God he is doing better on his leg now.
Jesse’s school had Parent Visitation Day the first week of March. It was so nice to be able to spend the day at school with him. (I am in the ranks of the unemployed now) Below is a short slide show of a few pics from that day.
Monday, January 30, 2012 8:10 AM CST
Hello friends and visitors,
It’s been along month with more doctor visits. We still know nothing conclusive on Jesse. We do know that he is having issues with spasms in his side that are obviously digestion related. It could be liver function, not just gallbladder. We are sort of stuck without invasive testing. We have re run many of labs and his CEA-Tosh (general cancer markers) markers are still elevated, and his Carbohydrate AG19-9 which measure risk factors of cancers in the pancreatic, liver, gallbladder, colon area. (pretty much any area of digestion) are still extremely elevated. This really concerns me with my husbands mom’s family history of cancers in these areas.
I’ve been reading a really good book called “Liver and Gallbladder Miracle Cleanse” by Andreas Moritz. It’s simply amazing all the wrongs that can occur in a slightly sludgy liver or gallbladder. It seems like a liver cleansing will be on the agenda next week and possibly several times after depending on the results. This is no way “end of life” for Jesse if I can help it without being too invasive or him being in constant pain. However I will not put him thru chemo if it does turnout to be cancer. We will keep him comfy and quietly let him go if this is the case. We are still waiting on more of the labs to return. Hopefully they will be of more help..
God has given me a verse just yesterday. It popped up in my email just when I needed it. Dear woman," Jesus said to her, "your faith is great. Your request is granted." And her daughter was instantly healed. – Matthew 15:28
This was an answer to prayer. I will take this as my “son” was (is) instantly healed. Please stand in agreement with me if you will!! God’s word is truth!!!
Meanwhile though he is losing weight, his vision seems to be improving even more, he is walking well. And remains in good frame of mind and happy. He doesn’t seem to have as much pain from the spasms as he did in the past, but they are still there, just milder. I will not be happy until the spasms are gone and the weight starts returning. I am glad that he still feels like eating. The appetite is good!
We are also pursing acupuncture again weekly as long as we can afford to it. Not sure how long that will be, but we’ve gone three weeks straight and we are seeing improvement in his leg and his overall well being. I also started a Chinese herb called TianMa (gastrodia elata) about a 2 months ago. It’s amazing stuff on calming the central nervous system. It has two added bonus’ for us, as it calms seizures and also in Tiwan they have studied it and found it effective in Alzheimers as well. Alzheimer's study
That’s about it for now. I will update more as I have time and as new things arise, but for now we are traveling another new road and with God’s wisdom and help we will cross this road with victory as well.
Love to you all and thanks for checking in on us!!! We will Survive!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Monday, January 30, 2012 8:10 AM CST
Hello friends and visitors, It’s been along month with more doctor visits. We still know nothing conclusive on Jesse. We do know that he is having issues with spasms in his side that are obviously digestion related. It could be liver function, not just gallbladder. We are sort of stuck without invasive testing. We have re run many of labs and his CEA-Tosh (general cancer markers) markers are still elevated, and his Carbohydrate AG19-9 which measure risk factors of cancers in the pancreatic, liver, gallbladder, colon area. (pretty much any area of digestion) are still extremely elevated. This really concerns with my husbands mom’s family history of cancers in these areas. I’ve been reading a really good book called “Liver and Gallbladder Miracle Cleanse” by Andreas Moritz. It’s simply amazing all the wrongs that can occur in a slightly sludgy liver or gallbladder. It seems like a liver cleansing will be on the agenda next week and possibly several times after depending on the results. This is no way “end of life” for Jesse if I can help it without being too invasive and being in constant pain. However I will not put him thru chemo if it does turnout to be cancer. We will keep him comfy and quietly let him go if this is the case. We are still waiting on more of the labs to return. Hopefully they will be of more help.. God has given me a verse just yesterday. It popped up in my email just when I needed it. Dear woman," Jesus said to her, "your faith is great. Your request is granted." And her daughter was instantly healed. – Matthew 15:28 This was an answer to prayer. I will take this as my “son” was (is) instantly healed. Please stand in agreement with me if you!!. God’s word is truth!!! Meanwhile though he is losing weight, his vision seems to be improving even more though, he is walking well. And remains in good frame of mind and happy. He doesn’t seem to have as much pain from the spasms as he did in the past, but they are still there, just milder. I will not be happy until the spasms are gone and the weight starts returning. I am glad that he still feels like eating. The appetite is good! We are also pursing acupuncture again weekly as long as we can afford to it. L Not sure how long that will be, but we’ve gone three weeks straight and we are seeing improvement in his leg and his overall well being. I also started a Chinese herb called TianMa (gastrodia elata) about a 2 months ago. It’s amazing stuff on calming the central nervous system. It’ has two added bonus’ for us, as it calms seizures and also in Tiwan they have studied it and found it effective in Alzheimers as well. Alzhiemer’s study>/a> That’s about it for now. I will update more as I have time and as new things arise, but for now we are traveling another new road and with God’s wisdom and help we will cross this road with victory as well. Love to you all and thanks for checking in on us!!! We will Survive!!
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Sunday, December 11, 2011 6:45 AM CST
Hello, friends and visitors,
The holiday season is upon us and we doing our best to prepare and enjoy it. I want to give a short update on Jesse’s current issue, and then reflect back on the past year.
Jesse has been having gallbladder issues. We noticed issues that started back on Sept 14 that occurred off and on in the way of unexplained pain. Then by mid October, it was bad enough I needed to find out exactly what was causing spasms in his right side, occasional vomiting during a meal (I kind suspected gallbladder at this point) On October 12th, we did blood work and Ultra Sound of his abdominal area. He has a vesicular polyp in his gallbladder. He had one previously that was small 3 years ago, but this polyp has doubled in size now. We will be doing 3D CT’s next week, also a HIDA scan too. We’ve done many different markers with so far with inflammation markers being normal; and other markers raising red flags. Not sure if these other markers are a baseline normal for Sanfillipo of it they really mean something. Time will tell if and what we decide in 2012 about these issues. Meanwhile we are managing pain and doing a revised gallbladder diet. I’m not fond of this as a total solution as he is losing weight on the gallbladder diet, but each time I try adding the extra calories or a small amount of fats, he is in terrible pain and having spasms. I know some say take out the gallbladder, but that is a last resort with this disease. Digestion is a major issue with MPS kids and I hate the thought of him having 24 – 7 diarrhea or other issues. We’ve been thru that as a toddler before finding out his food intolerances. So the investigation continues. Update 12/17/11 on 3D CT scan with contrast Jesse did great with the scan, he made some ugly faces when they injected the contrast, but no crying or wiggling. The scans showed nothing but the same polyp, and they feel it is not interferring with his digestion or function of the gallbladder. No signs of cancer even though markers were elevated. (this may be normal baseline for our kids, like elevated ALT's and AST's are) The next suggestion was to put him under anesthesia and do a bronchosopy to look for ulcers and or ulceration in the esophagus or the stomach. I am declining this action for the time being, as Jesse has never had a tube in his airway and I really don't want to risk it at his age when we can just treat him like he has these issues and see if it helps. If it doesn't help, then I'll consider more invasive action. Right now as long as we do the gallbladder diet, he is pain free. I am adding another food here and there to see if he will tolerate it. I don't like the weight loss we are seeing with just the gallbladder diet. :-( Other than that he is managing well. Have a Blessed Christmas!!!
This past year we’ve been thru much. The start of the year was good; we had our annual echocardiogram and Jesse’s heart function and valves have improved dramatically. The docs and I both were amazed, but nonetheless thankful. A few supplements we added for his back and leg pain are also known to help many other functions as well, the heart being one of them. Then we watched the devastating news on TV about the earthquakes in Japan. All we could do was to lift those people up in prayer. My mom became hospitalized after watching her over 3 weeks time slip away quickly in congestive heart failure, e coli, and other issues that all snowballed quickly on her. She was in crisis for 6 days before stabilizing her. She was hospitalized and rehabbed and then home with nursing follow up. In all it took about 8 weeks to start getting her walking any short productive distances and then back to driving. She still struggles with pleural effusion and short windedness. It seems to be improving each month though. We are blessed to still have her with us at 85 years old.
Jesse’s went thru a period of reoccurring roscea. (basically unexplained facial redness that would come and go) It took a while but we found it to be from foods or salad dressing with things like vinegar that are vascular dilators. This became very controllable once I figured it out.
Jesse’s vision has also become more of an issue this past year. He has very limited vision (classified as CVI- Corticol Vision Impairment) and refused to walk independently anywhere due to his not seeing. This has saddened me a lot as it takes away so much of what little independence he had. He loved walking and running around the house, yard etc. We now need to get him up every 30 minutes or so to ambulate him around just to keep muscles strong and digestion and circulation working. This setback saddens me much for him. There are so many things he enjoys visually.
Jesse turned 16 years old this past year, so we planned a party for him with friends and family. It turned out to be a very nice day with MPS family coming from Delaware and central PA to hang with us for the day as well as other friends and family. Hubby had a stressed knee just prior to that, but ended up being broken after the party. So he was laid up for quite some time with limited mobility from that. After about 10 weeks he was back to routine again.
I feel blessed as this past year another dear MPS friend whose son has been in last stages of this disease everyday now for quite a while, suffers another horrible crisis. Her oldest daughter who just graduated and was finishing college had a bad car accident, which has left her paralyzed from the neck down. She has broken nearly every thing possible in back, neck, hips, legs etc. She was not given hope of life, but her mom’s faith and persistence and lots of prayers have brought her thru. She is now home, though still paralyzed, she has hope and they are working thru this. God is answering their prayers!!
As the summer came upon us, I was so grateful every time the A/C turned on. What a blessing this is from last year!! Thank you for the caring angels who provided us with such a blessing!
We also took Jesse to the Maryland State Fair this year. We watched the horses pulling some beautiful carts. Walked the midway looking at the lights and the excitement being had by so many, and went thru all the exhibits and animal exhibits. Jesse got to pet and play with the cows, which seemed to give him some real smiles.
In September we noticed pain that didn’t line up with the actions we see with his leg or back pain. This pain escalated as the day went on after each meal. Then spasms started in his right side below the ribcage, then we started seeing his eating slow down with occasional vomiting while eating. I then knew this was most likely gallbladder related. After a few tests it is proving so. So now we are dealing with that, you can read my previous journal entries to see what we’ve been doing. The issue is not resolved yet, but we do have one improvement we did not expect while trying things. We started IP6 Gold to see if it can shrink the polyp. Well, his vision has improved enough that he is trying to walk around the house on his own again. Many days he does quite well visually. If this supplement does nothing else, I am thankful for this change!!! With that being said, while we move forward to figure out this current hurdle of the gallbladder.. MERRY CHIRISTMAS!!! PRAYING FOR A BLESSED 2012!!
>center>
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through! EVERY DOLLAR GOES TO RESEARCH, NOT ADMINISTRATION!! Team Sanfilippo We just approved funding for another exciting project that will most likely help our kids. It is already an FDA approved product, but needs testing on Sanfilippo mice. We as Team Sanfilippo want to fund this reasearch as with this if the mice do well, then we could possibly move on to our children in 6 months time. With supplements that are not FDA approved, it takes years to bring something to trial for our kids. Our kids don't have years!!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Saturday, October 29, 2011 8:43 PM CDT
Greetings to our friends, family and visitors,
Jesse is doing 85- 90 percent better these days. We have elected not to remove the polyp in the gallbladder at this time. The juicing and diet and IP-6 Gold are helping a lot. We haven’t needed valium for 2 weeks now. Here is link to the IP6, what amazing stuff. IP6 Research and more Hopefully we will see other benefits as well. Maybe we’ll be able to eliminate his blood sugar supplements in time. I am still sending labs out to the Great Plains Labs. They can do more particular stuff to help me fine tune Jesse. I have the tests kits in and the money now to do this, so we should be sending them out November 1.
There are three very good videos on this site about gallbladder and liver and digestion in general. It's really worth watching for any MPS parent or anyone with digestive, allergy or immune issues. Liver -Gallbladdeer Detox
I am adding the basic BIOFILM PROTOCOL I use when bowels or GI tract glow down. Our kids intestines tend to clog like a rusted water pipe does and I ahve earned this protocol to help our kids a lot. I use it with Jesse several times a year when needed if his BM's slow down on us. It's here for to you read and use if you so desire.
Biofilm Protocol
I like to start with cleaning out the intestines as much as possible before starting the protocol with an enema and or laxative. Supplements you will need before starting:
Enzymes: at least 2 of these: Nattokinase Serrapetase Lumbrokinase
You will also need some organic Cleanser for the Liver, Colon, etc. Ones I like are : The Cleaner by Century Systems. They have 7 day and 14 day and they have them for Men and or Women. I prefer a 14 day, this has supporting probiotic and stomach protectors as well. Herbal Guard by Yerba Prima or you can use individual herbs, but I like the first two products a lot. Oregano Oil (capsule) Golden Seal Black Walnut hull (oil)
Taurine capsules or powder- important for motility and bile production 500mg – 2,000 mgs per. Over 500mg divide into two doses daily.
Bicarbonate water (ie: Pierre, QuZac etc,)
Apple Pectin powder capsules or powder
In the morning upon wakening give 2 enzymes along with the Cleanser. (Ideally the enzymes 30 minutes prior to the cleanser, but it will still work if given together. We use applesauce to get the capsules down and about 4 – 6 ounces of fluids behind it. No food till about 30 minutes – 1 hour later. Then they can have their normal breakfast along with other supplements. Taurine should be in that group. 2- 4 ounces of bicarbonate water should also be included in drinks two times a day minimally.
Repeat this again later in the day. For us a good time was right after school as his tummy was about empty and the little bit of applesauce and drink was enough to get the pills down and satisfy for the next hour before his snack or dinner.
If you see tiredness or flu type symptoms, that’s okay. This would be the result of the “die off” of bacteria and possibly parasites living in the intestines. The apple pectin powder is good to give 30 minutes afterwards to help absorb those toxins caused by “die off” Those symptoms should end after the first week. BM’s may get loose after a few days on this and ideally so. They should get messy and yucky whiel getting rid of the stuff that’s been clogged up in there behind the biofilm wall. I do this for about 4 – 8 weeks for a child with severe recurrent impaction. I also do this two – 3 times a year or anytime I see bowels slowing down for more than a week without those daily BM’s.
Be sure to include probiotics once finished the protocol and a good multi vitamin and mineral support. If you are doing vitamins, it is still good to continue them thru the process.
I am not a doctor, this is just something that has worked that I have learned thru the Autism community and has worked on several other MPS kids now as well. So I am sharing this here for anyone who wants to try it. Dr. Peta Cohen and Dr. Usman are ones that use a protocol similar in the Autism community. This is how I personally used it for Jesse and it has worked time and time again over the past 3 yrs when bowels slow down. We keep the Taurine and bicarbonate in his diet all the time.
Jesse is also meeting his goals at school and seems to enjoy the Ipad at school. So we are looking to get one him here at home as well. This will be a challenge being the expense that they are. Here’s his school picture from this year, we didn’t remember it was picture day and his hair was long, and he was still having painful days from the gallbladder issues at that time. All in all it’s not too bad though.
Here’s a short video also from today Saturday Oct. 29th, we were playing inside as it was a rainy and yuck day with wet snow too outside. Quite a boring day for my boy. Please keep us in prayer that he can get back to normal diet in the near future. This is a challenge, but he mostly free of pain right now and that is what matters most.
Thanks for all your prayers for my mom. After her third thorencentisis, I presented an issue to her doctor that maybe could be the issue. Otherwise referred to as wet beriberi. My mom has had oedmea of the legs, high cardiac output, tachycardia, hypotension, and pleural effusion, her biggest problem causing her fatigue and shortness of breath. She was hospitalized for congestive heart failure. Last March and still hasn’t totally recovered. The pleural effusion has been a huge issues. No pneumonia or cancer either. We started her on the Benfotiamine (lipid soluable form of Thiamine about week before her last thorencentesis. She visited the doc this week, and he said there’s not as much fluid in the lung this time. Usually by 5 or 6 days afterwards she is getting fatigued again. This time it’s been a month now and she is doing much better. Praying the Benfotiamine is an answer.
"Thiamine deficiency with cardiopathy"
An acute form of thiamine deficiency characterized by oedema (especially of the legs, but also involving the trunk and the face), high cardiac output, ventricular failure, sinus rhythm, dilatation of arterioles, depressed erythrocyte and leukocyte transketolase, elevated serum lactate and pyruvate, and pulmonary congestion with pleural effusions; death from congestive heart failure may occur abruptly. A less common fulminating form is characterized by lactic acidosis, hypotension, tachycardia, and pulmonary oedema (which is the cause of death); this is termed thiamine deficiency with lactic acidosis.Synonyms: beriberi heart disease (in part), cardiovascular beriberi; Shoshin beriberi (for the form with lactic acidosis); wet beriberi; wet dropsy.
You will see a link at the bottom of webpage. It's for Team Sanfilippo. A non-profit organization that is organized by some of us Sanfilippo parents to fund research thru bio-med ways to treat our existing children.. We are in need of funds to follow thru with our dreams for our existing kids. Please go to the website and donate even $5.00, $10.00 or $20 if you can. It all adds up and we have some very realistic goals of possible treatments in 1- 3 years if funds are available to push through! EVERY DOLLAR GOES TO RESEARCH, NOT ADMINISTRATION!! Team Sanfilippo We just approved funding for another exciting project that will most likely help our kids. It is already an FDA approved product, but needs testing on Sanfilippo mice. We as Team Sanfilippo want to fund this reasearch as with this if the mice do well, then we could possibly move on to our children in 6 months time. With supplements that are not FDA approved, it takes years to bring something to trial for our kids. Our kids don't have years!!
Thanks for your prayers, and signing the guest book to let us know you stopped by. We really appreciate our visitors! Remember to keep the other families in prayer as well as your own good friends and family. Sometimes you just don't know, you might be the only person praying for a loved that day, and it will make a difference.
There are many other slide shows and pictures in our journal history. Just click there from the top of this page if you want to go back and see what we have been doing for the past couple of years!
Many past photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos
(John 3:16,17,18) For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God's one and only Son."
May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!
Hugs and many blessings to you and your family! Patty and Jesse
Tuesday, September 27, 2011 7:16 AM CDT
Greetings to our friends, family and visitors,
Well we had a good run with Jesse but the past two weeks have been really testy. At first I thought he might be having pain from his lumbar area and leg. His behavior was quite similar to the behavior we see when this happens. The involuntary movements became worse and his winching of his eyes had gotten bad and he definitely was not seeing when he started this behavior, he would start hyperventilating and just mentally be in a state or manic or panic behavior. (Sinus and airways are good, no reason for the hyperventilating, other than panic) After about 3 days it became non-stop requiring valium to get him to sleep and literally laying down with him with my arms and legs across his body. (catch 22 -Valium depletes melatonin, so with the valium, I am giving 2x the melatonin when I have to give it) After much research and no amount of pain meds helping, I realized that this might be yeast issues again. Ergh… Oh how I hate yeast issues with the brain. Then I realized that I ran out of Life Extension’s genistein WHICH IS FERMENTED!!! Thus producing less yeast in the gut when digesting. I’ve been buying Vitamin Shoppes Mega Isoflavones which IS NOT FERMENTED!! Which will produce more yeast in the gut when digesting. (it was cheaper to buy a little at a time for my budget now, but wow…did this screw my boy up??) After 2 longs weeks of this exhausting behavior and agitation for Jesse, I now have the Life Extension brand Isoflavones in and have switched over as of Monday, September 26th. I’m still continuing our protocol for ridding yeast of course. It’s a constant fight anyway to keep yeast gone from him, even with a low sugar diet. Estrogen tends to cause yeast flairs and flairs from estrogen can also send zinc and copper out of balance, creating even more havoc. Hopefully each day will get better now. By the end of this week I should know if this was the culprit. Please pray that I have found the issue.
Meanwhile he is going to school and they are managing his behavior pretty good considering all things. If he gets out of sorts there, we are giving him just 1 mg of valium to take the edge off a little. So far so good with that action. Last night I did not need valium for bed, just extra melatonin even though he was manic for the two hours before bed. Praying each day gets better from here on in!!
UPDATED October 11th Well its been a few weeks since getting the Life Extension genistein back. We have some okay days and some tough days. Still not sure what is casuing his issues. Seems like after every meal he gets worse and now doesn't want to drink all the time. Today we went for blood work and tomorrow ultra sounding all abdominal organs. I hate seeing him with the tension and the pain from whatever. Over the weekend I treated him for gallbladder issues in case of to see if he would be better. Saturday, Sunday and Monday am he 2 had HUGE BM's each morning of mostly runny stool but with lots of sandy gritty yuck in it. Is this gallbladder sludge?? Who knows. Anyway Monday was a pretty nice day for him actually. Then today he was back to having issues again and needed valium after lunch. Pray we find out what is bothering my big boy. Here are two video clips of what he is doing each day. It escalates as the day goes on and finally settles down about 1 -2 hours before bed time. He is sleeping fine each night now.. Thank God!! This was September 22nd, UPDATE October 15th We have theUltra Sound results back and it shows a polyp in gallbladder. Definitely a painful situation. It is 5.4mm x 4.2 in size, if it gets to be 10mm it needs to be kept an eye on on for cancer. Meanwhile we're while waiting for the bloodworks to return. We have been doing the gallbladder diet anyway as I was suspecting something there. It has helped, but not totally remedied the pain. Since further studying and researching, I have found a forum just for this. There's a forum for everything now days it seems. It's great to get patient input. Some have had the gallbladder removed, others just had the polyp removed, and some have done liver flushes and the polyps gone away. Since the liver is critical in all of this, I think I am moving towards doing this before anything else. His pain is getting better on the gallbladder diet and only needing valium every other day or so. (he still has mild discomfort, as soon as he gets any meat or protein he seems to get more agitated and the spasms start. I truly think the liver flush will help. This will be a month long process to do it right. I will update again when blood work comes back, as long as nothing critical comes back in it, this is the path we will take initially before considering removal of the gallbladder. Keeping Jesse whole is a major priority, but keeping him pain free is also a priority. There three very good videos on this site about gallbladder and liver and digestion in general. It's really worth watching for any MPS parent or anyone with digestive, allergy or immune issues. Liver -Gallbladdeer Detox
Update October 21st Jesse seems to be feeling better. Between certain juicing of special fruits and veggies, making something called "green soup" more like green paste, LOL! Grated raw beets with lemon and flaxseed oil, a few other non offensive veggies, and no meats currently, but protein in his oatmeal and one shake a day, he is doing much better. We also added IP6 Gold, a super antioxidant that may be capable of dissolving the polyp or at least shrinking it. Jesse has not required Valium for two straight days (today is day 3 with IP6. He is not hyperventilating as of now either. Hopefully this good stretch remains. After another week on the special foods, I will gradully add in some finely chopped chicken and lean beef once a day and see how it goes. Thank God for progress!! Here is a picture of him playing in his toy area today after school. He's quite content and happy, even a few laughs this evening. You can also read about IP6 Gold here, it's an amazing product. IP6 generic is not the same as the Gold, a huge difference. Generic caused my boy a seizure, but after talking to the researcher himself he advised me of three reputable brands!!! IP6 Research and more
Love to you all and thanks for checking in on us!!! 
>
Number two on my list is birthday parties. I am becoming more and more stressed on this issue. I have options, as Jesse has three cousins turning 18 also and the four of them are all born within 2 months of each other. We were all pregnant at the same time. Kind of cool! There is talk of having one big party for all of them. Sounded great at first, but as my mind starts thinking about it, I'm not sure I can handle this emotionally. The other three all being successful typical young adults now, and Jesse being Jesse. I just don't know that I could be there in celebration with them all and not fall apart. I love Jesse for who he is, and have no regrets, but with a day of celebration of the others turning 18, talk of what colleges they applied for or been accepted too, the sports, music and so on that will be talked about, well honestly, I will have nothing to talk about, only tears that Jesse can’t do these things. So I am thinking this may not work out for me. I can be happy for the others, and I truly am, but I don't think I can handle it in the same day I celebrate Jesse’s life. It's just not the same. I am thinking of however having a party (and if so it will be on Saturday May 4, here at my house, or my son's new house. I am leaning in the direction of my own house, especially if other MPS families come. I have more toys here, a play system in the yard for kids etc.. It will also be my sister who lives in Florida's birthday as well, she and Jesse share birthdates, and mine is on April 30, just 2 days before. We've always celebrated together when she lived her in Maryland before retiring to Florida. When she informed us that she was coming up and would be here that weekend, it excited me to think we could have all of us together for a birthday again, and how fitting for it to be Jesse's 18th birthday. Jesse would be the main celebration of course, not my sister and I. This is one birthday we thought he’d never see based on his diagnosis. So at this point if all the $$$ fall into place and nothing adverse happens between now and then, save the date May 4th for a birthday party at either my house or my son’s house just 5 miles north of me. 
A few people have asked what Jesse wants or needs for Christmas, so I have gone thru some sites and found things that he would enjoy or need. As always gift cards are always welcome too. 
>center> 
