History

Monday, August 7, 2006 5:05 PM CDT

It has been a busy summer and this update is long overdue. At the end of June we took Alex back to Dr. Mason at Mayo. I told him that Alex had been complaining off and on of his joints hurting, but since the pain was fleeting, and Alex didn’t have any swelling, we decided to go ahead and take him off his Methotrexate. We will go back in six months unless, of course, he flares again. If things stay well then we will try taking him off the Naproxen at that point. So far Alex has stayed flare free. He seems to be having complaints a bit more often, but they haven’t slowed him down so we’re keeping our finger crossed.

A couple weeks ago we received the July/August issue of the Kids Get Arthritis Too newsletter and on the front page was an article entitled, Remission: Fact or Fiction? Reading through it was rather depressing. I think the final two paragraphs sum it up well.

So, is there any chance that your child’s arthritis can go away forever - meaning no more medications, no more pain and no more doctors?

"That would mean we have a cure, and we don’t have on yet,’ says Dr. Wallace.

According to the remission criteria proposed by CARRA Alex has achieved a clinical remission on medication. He has to be off his medications for a minimum of 12 continuous months to be considered in a clinical remission off medications.

The statistics in the article weren’t encouraging. They state that while nearly 90 percent of children with JA will achieve inactive disease on medication, only 44 percent will achieve a clinical remission off medications. Of those children who do go into a clinical remission, 40-70 percent will have had a flare by the time they’ve been off their medications for three years.

I am really tired of "let’s wait and see." I am really tired of holding my breath while I wait for the proverbial ‘other shoe’ to drop. Does that mean I’m going to give up hoping that Alex will ‘outgrow’ this stupid disease? No way. Not now; not ever.

Love to all,

Kimberly & Co.

Friday, March 24, 2006 1:10 PM CST

I realized Wednesday afternoon that I hadn’t taken Alex in for his lab work yet, whoops! So, Thursday morning found Phillip taking Alex to the local clinic for a blood draw. We actually got to Mayo early for once. It was 3:35 when we entered the subway level lobby and so we got to sit and wait for about 15 minutes before Alex was called back.

He has grown a bit since he was there last August, which is good. Of course Alex’s lab results weren’t ready for him yet but they said they’d send me a copy when they got them. Dr. Mason talked to Alex for a while and then looked at his joints. He didn’t feel any swelling and there hasn’t been any redness, which is good! Then he talked to me. I told him that Alex was still complaining of pain in his ankles, knees, and hips occasionally but that it hasn’t hindered his activity at all.

Dr. Mason felt that since Alex has been doing so well we could go ahead with the taper and drop him down to 2.5mg/week of methotrexate for the next few months and then take him off it completely at the beginning of summer. Needless to say I was thrilled with his recommendation since I was expecting to do six months at 2.5mg/week and then a drop to 2.5mg every other week for at least another six months.

If at any time Alex starts to have problems again all I have to do is call him and he will fax in a new Rx for him, but we don’t feel that the possibility is very likely. Dr. Mason will see him again sometime this summer at which time we may change his daily dose of naproxen to as needed only.

Love to all,

Kimberly & Co.

Wednesday, August 24, 2005 3:55 PM CDT

The first week of August we lowered Alex's methotrexate dose from 7.5 mg/week to 5 mg/week. He seems to have tolerated the drop fairly well. That along with increasing his folic acid to 2 mg/day seems to have relieved the side effects he was having from the meds. He hardly complains of stomach aches now and his appetite has come back. I was afraid that he was starting to flare a couple of times but so far so good.

We took Alex back to Mayo this morning to see his Pediatric Rheumatologist, Dr. Mason. He examined Alex's joints and talked to him for a while asking him a bunch of questions about how he's been feeling. Then he asked me how I felt he was doing. I told him that as long as he was able to go to Tae Kwon Do and chase his siblings around I considered him to be doing well.

I asked Dr. Mason if he considered Alex to be in a medicated remission. He said that he would probably, yes, but that technically they don't consider it a remission if you're medicated. So we agreed to say that Alex's arthritis is well controlled at this point. I also asked him what the chances are that Alex will outgrow this. To make a long answer short, he feels that Alex has a very good chance (80of leading a normal life; in other words med free and without any permanent damage to his joints. Dr. Mason feels that Alex's quick response to relatively low levels of medication is encouraging and feels that "by the time he's in high school you probably won't even be able to tell he had arthritis, maybe even junior high" [emphasis mine]. Of course Phillip and I took this as good news. :o)

Since his labs did still show a bit of inflammation and he has had some minor intermittent joint pain we're going to keep him on his current 5 mg/week dose of methotrexate untill we see Dr. Mason again. We are stretching his visits out to six months from our current schedule of every three months. Of course we'll continue to monitor him for serious side effects [liver damage] from the meds with regular lab work. If he's still doing well at the next appointment we'll consider lowering his methotrexate dosage again and watch him for another six months.

Love to all,

Kimberly & Co.

Tuesday, June 7, 2005 11:55 AM CDT

Well, it's been a while since my last update hasn't it? Sorry 'bout that. Alex did fine with his chicken pox vaccine and we started him on the methotrexate at the beginning of April. At the end of April we went back in for a check and Alex had gained two pounds. Dr. Mary seemed happy with that so I guess we don't have to worry too much about his growth anymore. Of course, I'm trying to make sure he keeps eating well which is getting harder now that he's on the methotrexate as he looses his appetite on the days he takes it. He had labs drawn in the middle of May to see how he's handing the new med. His liver functions were fine but Dr. Mary was concerned that his iron level was a little low so she put him on an iron supplement. I didn't think it was that low (11.1 - should be at least 12) especially since it was 9 the last time we went to Mayo back in January. I thought about ignoring it but since Alex was looking pale and feeling fatigued a lot I went ahead and got the prescription filled. I have to say that he has seemed to perk up since starting it. Hopefully he won't have to stay on it for more than a few months, we'll see....

We took Alex back to Dr. Mason yesterday. He was glad to see that Alex had grown an inch and gained two and a half pounds since January. He examined Alex's joints and talked to him for a while about how he's been doing since he started the new medicine. Alex said he's been fine most of the time and that his joints only bother him a little bit once in a while. His range of movement (ROM) has improved, especially in his elbows. He can get both of them straight now. His right ankle is improved as well though it's still giving him a little bit of trouble and his ROM isn't 100et. Dr. Mason feels that he is responding well to the methotrexate aside from the stomaches and loss of apatite. To combat that he has increased Alex's folic acid intake to 2mg/day from 1mg/day. Hopefully that will help. He asked us how we felt about Alex's progress and I said that we were pretty happy with it. My main concern has been the side effects from the medications he's been on (mostly tummy troubles from the NSAIDs & mtx).

Dr. Mason wants to keep him at his current dose of 7.5mg of methotrexate/week for a couple more months to make sure he's well controlled. He is having us taper Alex down to 5mg/week at the beginning of August and then we'll repeat his labs and see Dr. Mason again at the end of the month. If all goes well with the first taper we'll drop him down 2.5mg every 6-8 weeks until he's weaned off of it. Of course, that's assuming he tolerates the drop well. If he flares again we'll be back at square one.

So, I guess that's pretty much everything.

Love to all,

Kimberly & Co.

Thursday, February 24, 2005 2:31 PM CST

Well, after about six weeks of researching the chicken pox vaccine and weighing the theoretical risks of developing Reye's syndrome from NSAIDs, not to mention messing with an already messed up immune system -verses- the very slim risk of catching wild chicken pox while on methotrexate (which is never good) we finally made the decision to go ahead with the vaccination. I took Alex off his NSAID a full day before his "well child" appointment yesterday and will be trying to keep him off it for at least a week, preferably two, just to be safe. The manufacturer of the vaccines says to avoid salicilates (aspirin) for 6 weeks after the vaccination is administered so that is how long we're going to wait before we start him on the methotrexate. It seems like forever to wait when he's hurting but I know in reality it'll be over in the blink of an eye. I can hardly believe it's been a year since he first started complaining about his elbow hurting....

We brought up our concerns about his growth to Dr. Mary. At 10 years old he stands 4'4" tall and weighs 52#. We never expected him to be a football player but when he's the shortest 10 year old you know and even slims are too loose you tend to worry.... His pediatrician wasn't too worried about his height (he's still in the 25th percentile) because he's following his curve. Besides, he still has a couple years before the prime growth spurt window opens. However, she was worried about his weight. He dropped off the chart since his last visit at age 8 when he was in the 5th percentile. She did order an x-ray of his hand to check for bone growth and I should be hearing back on that in the next few days. She wants us to try and pump more calories into him and come back for a weight check in a couple months. She suggested peanut butter (I guess she forgot he's allergic to peanuts) and Carnation Instant Breakfast but those are dairy based and we have issues with dairy so we stay away from it (besides, they're made by Nestle and I've boycotted Nestle for the past 10 years). So now I'm trying to figure out how to get more calories into him. I'd prefer healthy sources so it looks like I'm going to be doing the internet research thing again....

Love to all,
Kimberly & Co.

Wednesday, January 26, 2005 3:28 PM CST

Hello again,

  Well, I've been loosing sleep over the chickenpox vaccination issue to say the least. I've been doing some research on the topic and I've heard some pretty good arguments for not giving it to him. There is a book called "It's Not Just Growing Pains." It is written by Dr. Leman who is considered to be one of the top pediatric rheumatologists in the country. In his book, Dr. Leman states that no child with active arthritis should receive a live vaccination (which chickenpox is).
  I've posted on a JRA message board and email list to other parents asking them for any advice or experiences with regards to the chickenpox vaccine and I got several responses that basically boiled down to either: Our rheumy said absolutely no live vaccines - or - we vaccinated and my kid got the chickenpox from it and or/flared really bad and a few found out that it hadn't worked latter on.
  I brought up my concerns to Alex's pediatrician and she did some checking around with the Mayo immunologists. She is basically taking the same stance as our rheumy by saying that the risks of him getting the chickenpox while on methotrexate are worse than the risks of vaccinating him right now. So now I'm between the proverbial rock and a hard place with the doctors on one side and my mother's instincts on the other.
  So I took a chance and emailed Dr. Lehman to ask him to clarify his position. He actually replied within a few hours stating that the major risk was that Alex could develop Reye's Syndrome from a live vaccine while on *any* NSAID and that "getting chickenpox while on methotrexate is a disaster." So our options are to take the chance that he's not going to be exposed to them while he's on the methotrexate or to take him off all his meds for about 3 weeks just to be safe and get him vaccinated. Decisions, decisions....

Love,

Kimberly & Co.

Tuesday, January 18, 2005 1:51 PM CST

Hello,

I had meant to get this updated over the weekend but, as usual, life got in the way. Then on Monday our ISP was down for most of the afternoon. So here it is Tuesday already and I’m just getting around to it finally.

It was so cold here in MN (-1 was the high!) on Friday that our poor van didn’t want to start, we ended up stuffing everyone into the car for the drive to Rochester. Even after finding a place to park and going all the way up to the east wing of Mayo Building’s 9th floor we were still about 15 minutes early. Of course, they promptly sent us all the way back down to the subway level and over to the Hilton building a block away.

Once we arrived at the proper desk it didn’t take long for them to call Alex back for his labs. The anticipation was making Alex very tense and I had to keep reminding him to breathe and try to relax. The technician was very nice, I wish I could remember her name…. After they took a few vials of blood from him, took out the needle and wrapped some gauze around his arm they let him pick out a sticker and a pencil (small consolation for getting stuck as far as he was concerned).

It was getting close to lunch and we had about four hours to kill before he saw Dr. Mason so we decided to go get something to eat at the mall and kill some time. As it turned out they were having a sort of mall wide sidewalk sale that weekend so we lucked out! Caity spent some of her birthday money at the Disney Store and bought a few shirts (all pink – go figure). Alex found a Harry Potter Lego set on sale for 75ff at Sears so we bought that for him to try and cheer him up a bit. Josh wanted to find some more Legos on sale but he didn’t have any luck.

About 3:00 we headed back to Mayo. We got back up to E9 about 25 minutes early. Josh and Caity had them put Pinocchio in so they could watch something. Phil, Alex and I played Uno but it wasn’t too long before the nurse called us back. She weighed and measured Alex (he gained a whole pound since his last appointment on Dec. 2nd) and took us back to an exam room.

We didn’t have to wait long for Dr. Mason and he didn’t waste too much time getting to the point. Alex’s labs haven’t improved much with just the NSAIDs (non-steroidal anti-inflammatories) so we need to be more aggressive and move on to the DMARDs (disease modifying anti-rheumatic drugs). He prescribed an intermediate dose of Methotraxate for Alex, which he has to take once a week. He also wrote out a script for a daily Folic Acid supplement because MTX can interfere with the way the body uses Folic Acid.

Dr. Mason also suggested that we might want to get Alex vaccinated for the chickenpox, since he hasn’t had them, before we start giving him the MTX because it’s an immunosupressent and getting the chickenpox while he is on it could be very bad. So now we’re considering what we should do about that.

Once he starts the MTX it will take a few weeks before we notice any difference. Hopefully this will do it for him and we won’t have to increase the dose or add any other meds to his cocktail. He will be going back to Mayo in about six weeks. At that time they will do more labs to make sure his body is handling the MTX and Dr. Mason will decide if we need to be even more aggressive or if this is working for him. We're praying it works....

Love to all,
Kimberly & Alexander

Tuesday, January 4, 2005 3:19 PM CST

Alex was finally feeling up to going back to Tae Kwon Do yesterday after missing all of November and December. He had tested for his High Green belt at the end of October and hadn't been back to class since then to receive it.

I was a little worried that he would have trouble since he still has some swelling in his right ankle and both of his elbows, but my concern was apparently unfounded. The only thing he complained about was being cold (he's been running a low-grade fever again since he stayed up on New Year's Eve) and having a stitch in his right side.

Alex goes back to Mayo on Friday, January 14th. He has labs at 11:00 a.m., and an appointment with Dr. Mason at 4:00 p.m. We will continue to keep everyone updated as to what is going on with Alex via this web site from now on so you might want to bookmark it. I will try to remember to email everyone whenever it's updated.

Love to all,

Kimberly & Co.

Monday, January 3, 2005 11:25 AM CST

A little of Alex's history:
Near the end of June 2004 Alex started complaining of his right ankle hurting. Several days latter he was still complaining and we noticed it was swollen. We assumed that it was a sprain, and treated it as such over the weekend, even though Alex couldn't remember hurting it. By Monday Alex's ankle was still swollen and he was running a low-grade fever, and complaining of a mildly sore throat and a headache. He also said that his elbow felt swollen, though I couldn't detect it.

We took him in to see Dr. Mary, his pediatrician, and she suspected that it was arthritis right away. She had some lab work done to rule out strep throat induced rheumatic fever (which was negative) and to look for several things that are associated with JRA (RF, ANA, ESR) and told us to give him ibuprofen 3x/day. She sent a referral for us to see a pediatric rheumatologist at Mayo Clinic and set up an appointment with the local orthopedist to make sure that Alex's ankle wasn't septic (it wasn't). When we saw the ortopedist a couple days latter he ordered more blood work to rule out Lyme Disease (negative) and to check Alex for a genetic marker called HLA-b27 that is present in kids with certain forms of Juvenile Arthritis (he doesn't have it).

It was four weeks before we were able to get in to see Dr. Mason at Mayo Clinic. During that time Alex has blood drawn about half-a-dozen times and was seeing his pediatrician at least once a week. He continued to run a low-grade fever and have pain and swelling in his right ankle and elbow. After a few weeks it became so bad that he could hardly walk at all and was using a cane to get around but the most aggravating part for him was missing his Tae Kwon Do classes. When we finally saw Dr. Mason the swelling was mostly gone although he still had some pain. At that point Dr. Mason felt that Alex probably had a viral induced arthritis because it was resolving so quickly (A JRA diagnosis is only given after at least 6 weeks of joint pain & swelling) and that it would most likely continue to improve and he wouldn't have problems with it again.

Fast forward to the end of October. Alex started complaining of his elbow bothering him again. By the beginning of November he was running a low-grade fever again and having trouble with several joints (both elbow & ankles, the second toe on both feet, and his lower back and his left wrist). We called Mayo Clinic and got Alex back in to see Dr. Mason on December 2nd, in the meantime they told us to give him Aleave 2x/day. After looking at Alex and considering his history he said that Alex definitely fits the JRA profile and that it's most likely Polyarticular at this point. He switched Alex to a stronger NSAID (tolmetin) and ordered a bunch of x-rays of his joints to check for damage (luckily there isn't any so far). We go back for a follow-up on January 14th, 2005.

Please keep Alex in your thoughts & prayers!

Love to all,

Kimberly & Co.

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