Gifted Issues Discussion homepage Forums Parenting and Advocacy Advice on advocating for a sick child in HS

Ds13 is in 8th grade and doing well academically, but he's been dealing with a mystery illness/condition, whose main symptom is overwhelming fatigue, for nearly a year. We spent months trying to get anyone to even look into it ("all teens are tired" "he's growing" "it's puberty") and then more time fixing issues we uncovered (allergies, mild anemia, mild b12 deficiency, etc) but nothing seems to have fixed the issue. We just had a 24-hour sleep study, and will get the results next week, but the doctor has basically already said she thinks it is idiopathic hypersomnia and she is willing to write him whatever he needs for school. Honestly, I'm not sure I agree (seems more symptom than cause to me), and we are continuing to investigate (echocardiogram soon, as well as meeting with a rheumatologist), but in the meantime, I'm trying to figure out what to do to make his school life easier. He goes to the HS every morning for math, and he seems to do fine without a lot of work in his honors AlgII-Trig, but the doc has already suggested dropping that (just fyi, he's not particularly hard to wake up or especially tired in the AM, but the class is early). However, HS is starting full time in 6 months either way. Do I try to get a reduced schedule? Put him in easy classes so he can rest more? Try to get the homework load reduced? He's slated right now for honors pre-calc, honors Eng, honors bio, AP World, orchestra, Spanish and PE. Intellectually, he is fine, but he comes home every day after school, sleeps for three hours, gets up, eats dinner and does a little hw, and then is back in bed by 8 or 9. He's had a few minor illnesses in the past six months (tonsillitis, viral infection) and during those, he'd sleep 18-20 hours a day... seriously, we've been charting his sleep. I look at what my current HSer is doing in terms of activities and hw, and there just aren't enough waking hours in ds13's day. Obviously, I am worried sick trying to figure out what is going on, and figuring that out is my first priority, but on a practical level, I also want to help him feel good about school. The teachers/counselor seem very supportive, and the counselor is willing to move ahead with a 504 ASAP, but I honestly just don't know what I would even ask for. Has anyone dealt with a gifted teen with health issues? Any thoughts?

I developed JRA my freshman year of high school and it was rough. I kept the same course load but ended up doing hospital home bound services for about half a school year. Do they have this type of program that may help or could he do a virtual school in which credits will transfer to his high school when he can go back. Hope that they find out what is going on and he is ok soon. You may want to have them test for Lyme disease just to rule it out. I know it starts with a viral type illness and can lead to some pretty serious chronic fatigue.

My inclination would be to look first to possible accommodations regarding reduced work load, to virtual school, or to some kind of hybrid (so he can continue with orchestra, for example). Virtual school has some additional pluses, in that it is more likely to have some self-paced aspects to it, and he will likely save on a lot of in-school non-instructional time.

For instance, a modified schedule could consist of a couple of hours in school, to attend orchestra, and whatever academic most benefits from face-to-face teacher & classmate interaction, then early dismissal to finish the remainder of his classes online.

Thanks - I had been wondering about Lyme. We also have a history of autoimmune issues, so trying to cast a wide net as we look. I know the school has homebound, but from what I've seen in knowing some parents whose kids used it, it often doesn't have tutors capable of doing the higher-level classes.

That's a good idea - it might give him more rest while getting the same amount of learning. I thought about homeschooling, but honestly, I don't think I remember enough precalc and biology, not to mention I can't read music!

Virtual school is made for this kind of scenario. There were times when this was a complete life-saver for us with DD, when minor respiratory illnesses could send her immune system into a tailspin. She often was only able to work for 6-8 hr during those days, and I'd say that ordinarily she has pretty low sleep needs. It was just that medically, things could get complicated in a hurry.

Howler - this may be a stupid question, but did your dd switch between virtual and b&m during the school year? Is that possible? Our school district only offers a few courses, but I know that there is a virtual high school available that offers more options.

nope-- we went all-virtual because the B&M setting was partially what triggered (one of) my daughter's medical conditions. Taken out of the picture, she had a lot fewer problems during those years, period. That was our individual situation, though-- I have known a few people to do a modified schedule, if they had the option.

I wish that DD had been able to access some extracurriculars like speech, debate, and theater.

Thanks for posting this thread, we are just getting started with considering the same thing.
For the past 7 years my son has gotten progressively more and more weighed down by physical ailments, but no solid diagnosis to explain the continued issues.

In the last 2-3 years we have started treatment for the following: asthma, seasonal allergies (thankfully no food allergies) and accompanying sinus infections. In addition to fatigue and aches, his most recent new symptom was a racing heart while standing around, or sometimes even when just lying around. Actually this is good in some way because it gets us out of the 'imagined' illnesses into the realm of real physical conditions. I know what you mean about the struggle to get help.

This last symptom kind of did the trick for me. Putting that together with his history of a severe viral illness at age 8 (which I'd already pegged as the 'beginning' of many of these issues) -- I found that there is a syndrome called 'POTS' which can be a result of a viral illness, exacerbated by rapid growth in teen years and dehydration/low salt intake. One symptom is major fatigue. You might look into it.

Per the cardiologist, who basically agrees this looks like a possibility after doing a heart rate monitor for a month, we have increased salt and water and removed him from any stimulant meds for his add (which weren't a big hit anyway, so that is not a huge loss).

His incidence of the problem with his heart rate is almost
zero now, however last week he was feeling pretty sick again and probably dehydrated and it started beating fast for a few minutes. I am of course watching his water intake again more closely.

This doesn't completely eliminate the fact that he *is* more sick some of the time, partly due to the asthma and allergies, so we are working on allergy shots to relieve that as much as possible ( they tend to make him feel worse sometimes too however). And monitoring his asthma more closely.

But the cold and flu season is upon us, and so he is missing many days this month so far.

We contacted a few of his teachers and they are 100% kind and helpful, so we have good hope that maybe we can just keep getting him his work and he'll be able to get it done. Academics are so far very good this year.

One concern is the P.E. course he was going to take this summer - we put it off in lieu of a life skills class which I think has been pretty beneficial.
It has a pretty high bar for completion of physical activities, so we are not sure whether to get an up front waiver of the physical part, if that is even possible, or just some kind of semi-waiver so that if he runs into health problems mid-way it won't keep him from completing the course.

If anyone has experience with this, please let me know.

Sorry this is so long, but perhaps may help others in the same boat.

I was going to mention POTS also.