My son was diagnosed with TRAPS at age 6 after suffering from symptoms since he was approximately 6months old. He was in the hospital many times and tested for everything under the sun. I just recently found this site and am no longer feeling crazy and isolated. My son takes etanercept when symptomatic however symptoms and cycles have changed and he is now 12 years old. Fatigue and general malaise and concentration are always an issue now even when fever and pain aren't present. My questions go out to those who have dealt with this for a number of years. Do you ever notice a relationship of symptoms resulting or preceding growth spurts? Also, how do you deal with the anger that a child has from being so different from peers, always having to work harder in school because of absences and symptoms, and lack of social interaction due to inability to keep up with peers? My son always seems to be more fatigued than his peers and requires lots of sleep even when he's not in a flare up. Also, he seems more sensitive to injuries for example increased pain response. Does anyone experience these symptoms too?
Thank you,
Jessie
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Do your child's symptoms change over time?
Explore topics in this discussion:
1 reply
- By althea
- Posted November 19, 2007 at 11:41 am
- Report post
Dear Jesse,
My son is now 17 1/2 years old. His actual diagnosis was only 5 years ago, but we probably were dealing with the fevers and related symptoms since he was 5 months old. Luckily that was the only time he was ever hospitalized. He had so many ear problems, like frequently ruptured ear drums, that his symptoms were always attributed to ear infections. The malaise, fatigue and sleep needs that you describe were a big part of his life, too. I think that his fevers were more frequent and the symptoms became more intense when puberty began. It was the obvious frequency of the symptoms that got the doctor's attention and lead to a confirmed suspicion with the positive DNA test for TRAPS. I have been told by his docs that the immune system and endocrine system are highly active during puberty.
My son also felt quite isolated from his peers during middle school because of the frequent abscences and his inability to even be in their gym classes. We figured out by 6th grade that physical exertion threw him into a TRAPS cycle within just a couple of hours. He used his time alone to immerse himself in academic pursuits, though not always related to his current schoolwork. It resulted in winning the Geography Bee once during middle school(he missed the next year's Bee during a TRAPS flare), and becoming a near celebrity at his high school on the Debate Team. He just competed in a national German Language Olympiad as one of the top 25 students in the US. His ACT/SAT scores are remarkable, especially for a kid that was absent for a total of 1/3 of his freshman and sophomore years. I'm not bragging about my kid. I'm just showing you that avenues of success and pride are possible for our kids in spite of how awful and untimely TRAPS flares are. In Boy Scouts, he missed alot of events and meetings from TRAPS flares, but he is accomodated toward his rank advancement requirements with some substitutions through the Boy Scouts with Disabilities progarm.
In Speech class a few years ago, he used the opportunity to explain his TRAPS as the subject of one of his speeches. It really opened some of the minds of his classmates then, who no longer saw him as "that smart kid who was gone all the time."
Having TRAPS doesn't define him. Although he hated the injections(11 Kineret shots during a 5 day flare), hates having to stick to a regular bedtime, and no sports to play with his friends, he's found other things to channel his energy and interest. And yes, he spends too much time on a computer gaming like the rest of male teenagers in his age group!
I completely understand how difficult and frustrating it is for your son to be constantly catching up on school work from his abscences, and how it consumes his time when he ought to be connecting with his friends. My son went through that all through middle school. His teachers held him to every stupid assignment and quiz or they would give him an incomplete for his grade. They couldn't wrap their mind around the diagnosis, because they didn't see it as something physical. They told me later, that they just thought he was lazy. And because he wasn't on any medication, they just wouldn't buy-in to the diagnosis. We actually tried to get a depression diagnosis--because they said they understood that, and then he'd be on record taking some form of medication. Then they would consider him as a Special Ed student, and that would buy him some academic leverage. The psychologist told us he was extremely mature for his age and that dealing with TRAPS was probably the reason for it, but no depression. The middle school years were miserable for all of us in the household!
When Eric started high school, I engaged the services of an attorney who had a specialty in education law. The school had little sympathy for Eric's situation until the attorney was at the table. I drafted an iron-clad 504 Plan that protects my son from systemic school policies and grading discrimination over his abscences, and provides him A+ grading opportunities for mastering course content, if he does so. It also puts a guidance counselor in position as kind of a referee with the teachers to help manage class vs. class priorities and deadlines for tests and projects that TRAPS cycles have interfered with. When he's not sick, it's school as usual. But, when the fever cycles, the 504 Plan rules kick in. ( He hasn't had a TRAPS flare since July 2006, when he started taking a Fish Oil capsule daily).
Jesse, you live in Wisconsin, too. If my kid's high school agreed to this 504 Plan, I think you would have a very good chance of getting your district to adopt it for your son, too. My kid's high school has a reputation for being about the most difficult to deal with in the state regarding IEP's and 504's. My attorney uses Eric's 504 Plan as an example of what is possible and how well it can work when he teaches Continuing Education seminars for other attorneys. Email me and I'll send you a copy of it.
Althea
Add to the discussion