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Matthew’s Story

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

Latest Journal Update

It's been a long time. . .

We've been in school for quite some time now.  I can't say enough about Rancho Cucamonga High School and the staff there.  We continue to be blessed and touched by the kindness and support we receive on a daily basis from each person we come in contact with.  His teachers have made some accommodations for him, they are patient beyond anything I'd imagine.  He's doing well and looks forward to going nearly every day now.  Matthew is lucky enough to have an aide who is supposed to help him get from class to class but she's so much more.  Her name is Sarah and she is Tiff's age (I think), she helps him keep track of things, backs up his notes "just in case" and helps him with pre-calc (thank goodness!).  She meets him every day with a smile and let's me know when he's talked too much in class or let an assignment slip too far behind.  RCHS has to be the best high school there is in my opinion.

As we switched insurance I knew we'd need a new counselor and psychiatrist, I decided to try Loma Linda since I wasn't having any luck getting a referral.  My criteria?  A young, athletic, male psychiatrist, my thought was that Matthew would have better luck bonding with someone like that.  In looking over the web site I found someone I thought might work, made an appointment and we went.  His name is Dr. Puder, he asked repeatedly how I found him, it seemed he couldn't quite comprehend my search story.  Dr. Puder heads up a program at Loma Linda Behavioral Health Center called M.E.N.D..  This program is for people who have physical reactions to trauma they've suffered in their past.  Yep, that's Matthew with Conversion Disorder.  Dr. Puder pulled up You Tube videos of soldiers from World War I who suffered from "shell shock."  Matthew watched and identified immediately with the soldiers in the footage; his relief at finding someone who finally understood was palpable.  He started MEND within a week and a half of the initial appointment with Dr. Puder.

So. . . three afternoons a week, after full days at school, we pick Matt up and head out to Redlands for treatment.  The sessions are 3 hours long, add on travel time of about 45 minutes each way and those days are long.  The therapists there work with small groups of kids all about Matt's age.  He's made some great new friends already.  His therapist picks and prods, she pushes and demands and he listens and talks, and we are seeing changes.  He's still in a wheelchair but he spends more time walking farther now on a daily basis than he did the entire time he went to physical therapy.  The program is designed to last 6 to 8 weeks but Matthew's case is, as we've known all along, not typical.  His therapist expects 3 to 4 months; the neurologist said as long as a year from when he started.  Either way, we are confident he will be walking again.  

This is all complicated by the need to continue to adjust Matt's medications.  After being on phenobarbital for nearly twenty months, at doses most people would be unconscious taking, the dose is down below "therapeutic" range.  We found out that even if he didn't have epilepsy coming off phenobarbital often causes seizures. Matt's had a couple, the first was so intense I called 911 and took him to the hospital.  He checked out fine but the seizure was long, his lips turned blue and Joe had just left to go out of town.  He's had one more since then but his mind is so good at duplicating real seizures with pseudo-seizures that we won't ever know for sure what the most recent one was.  The pseudo-seizures have increased too, its part of the healing process.  The analogy that fits best is that Conversion Disorder is like when someone breaks their arm and it sets wrong; doctors have to re-break it, which is incredibly painful, and let the healing start all over again.   When Matthew woke up at UCLA he was so confused, he couldn't speak, he was cognitively very young and then the movement disorder got so bad that doctors put him on a paralyzing drug that kept him from moving but allowed him to be awake.  Children died all around us and he knew that.  The trauma was harsh and deep seeded.  Now we have to dig it all up, as well as anything else that he buried before he got sick (if you know us at all then you know that within two years prior to Matt's illness my dad died, we had to move out of the only home he'd ever known, Joe had another heart attack and we had to put down the dog Matt grew up with among other things. ..enought trauma for anyone) and clean all that muck up, then let him heal in a healthy way.  Its painful, but worth it.

He describes himself as being happy most of the time now, even more so than he was before the illness.  His perspective has changed, his values are different now.  Matt has a personal relationship with Christ now that gives him joy, not just happiness.  He has new friends, the old ones at school are a grade ahead and seniors.  There's always the constants though, Zack and his family are always around for Matt (and all of us).  We are all exhausted but learning to be like Paul, "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want." Philippians 4:12.  
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Comments

7 Comments

anne marie gunn
By anne marie gunn
So glad to hear of Matt's progress. Keep working! All things are possible through Christ.
Teresa Larsen
By Teresa Larsen
Thank you for taking time out of your VERY busy schedule to give an update. I am so happy to hear that Matthew continues to work hard and improve. I know it can't be easy, but he is truly an inspiration.
May God continue to bless you all. Hugs, Me
Deborah Candelario
By Deborah
Thank you so much for the update Janet. My prayers continue for you and your family Matthew, it is wonderful to see how God is using this situation to grow you and draw you closer to him. Indeed you are truly blessed.
Nan J Allen
By Nan J Allen
Love to you all. Prayers.
patricia caceres
By Pattie Caceres, Resp Therapist @ KP:FH
The Lord is definitely there for all of you! It's amazing how much we don't know but finding the right direction to find those who do know, well I say is miraculous! So glad to hear Matt is making great progress. God's still giving you all the strength you need. I keep praying for your families sucess!
Jan Salvay
By Jan Salvay
Thank you for this update on Matt's progress. So moving. His aide Sarah and Doctor Puder sound like extraordinary people. Matt, you are extraordinary and so is your family. We are so happy for all of you. Our hearts are with you always.
Connie Jacobs
By Connie Jacobs
My son was in the MEND program for 6 months in 2012 and at the time he "graduated" had been in it longer than anyone else. He was/is dealing with depression from chronic illness and 2 pending surgeries which he had during the time he was in the program. The program really was a life saver for him. They do really great work with the teens.
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