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.

Wow, I was just sent this article by a friend in Minnesota who has been following our saga. It was the first time I had heard of POTS. It doesn't seem to be what ds has - his heart rate is actually quite low (in the 50s), but it almost had me in tears I was so grateful that someone cared enough to both believe me that this was not normal and tried to offer a solution.

I hope you have found at least part of the answer for your son, and please don't apologize for the length!! On a practical level, I do appreciate reading about others' experiences and learning more, and on an emotional level, it's just nice to know I'm not alone!

I was ill as a teenager/young adult. My advice would be to emphasize the compact part of "compact and accelerate". Don't waste your child's energy by asking them to invest effort in something that doesn't actively create value. But don't constrain their education or force them to learn less or think less deeply than they want to. I took almost double the number of courses most of my classmates took, but skipped a lot of classes, relying on reading (skimming) on my own to keep up with the course content. My education was structured in a way that meant only the final exams mattered, so I didn't have to deal with a heavy regular assignment workload that counted toward my final grades.

For subjects like PE I had an agreement (doctor's note) that allowed me to participate at whatever level I felt capable, which often wasn't much. In retrospect some regular but low intensity exercise/conditioning probably would have helped me maintain and develop stamina - eg yoga, Pilates, non-competitive swimming, etc.

Finally, as mentioned in the article linked above, the social aspect is really important for teenagers, and often overlooked. Being ill or fatigued can be really isolating. As parents, make a point of hosting [a few of] your child's friends for relaxing social occasions. E.g. sharing a meal, watching a (dvd/streamed) movie, video or board games, listening to music, just hanging out and talking. As a bonus you will get to know your child and their friends better. Also seek opportunities where your child can go out and be near their peers and hang out near the action without too many demands being placed directly on them - e.g. watching school sports, participating in drama (where level of involvement can be scaled from behind the scenes support to starring), etc. Make sure they are able to rest or leave when they've had enough so that they are not overtaxed. Socially unavailable teens can be seen as being standoffish and it can be a very isolating downward spiral. Friends who are engaged are a big source of moral and practical support for sick teens.

Good luck figuring out what's going on, and managing through this illness.

Thank you, Trio! It's valuable to me to hear from someone who has actually been in those shoes and knows what it's like!

I just read that he was being treated for asthma. Have they checked his cortisol level? Low cortisol or adrenal insufficiency can cause fatigue aming other symptoms. It is a rare side effect of steroids, inhaled or oral, but it does happen. Doctors tend to blow it off as a possibility- it literally took years for one of my sons to be diagnosed. It can be debilitating and even life threatening, especially if it is not being treated. It can be diagnosed with a simple AM cortisol test.

While an iron transfusion is not likely to fix everyhting, it might provide a good "boost". My DS13 has had two now... I should have done it years ago!

It was Chris1234's son, not mine, with the asthma, but I truly appreciate the input. Although we hope to get some answers this week (sleep study results and heart testing), we are seeing the primary again next week to go over results or lack of results and I am compiling a list of "should we check this?" I know that this forum is mainly for issues related to gifted, which is why I asked for advice re: how to accommodate a gifted child who also happens to be ill, but I welcome any suggestions on the medical front! I'm sorry that it took years of trying to get answers for your son to give you this insight.

Was your son severely anemic or just mildly? Ds seems to have returned to normal levels after twice weekly supplements, but I will also put this on my list to discuss. His was low this summer while running and I have read that runners have higher iron need...something to keep in mind if he is ever well enough to return to track and XC. Thanks!

We could with careful control of dairy consumption (he would live on milk if allowed) and supplements get his iron in the normal range but as soon as I stopped obsessing about it, it would drop back down again. He now has very high levels and says he feels different. We saw a pedeatric hematologist at our local Children's hospital who recommended this course of action. He missed a day of school after the first treatment, he was feeling very "strange"... He is even happy he did it (which says a lot, he is terrified of needles). Hope that helps. PM me if you need more info.

When you have the medical professionals on board to document that the health issues are unequivocal, you should not have problems getting what you need and don't be afraid to ask. Over the years, my oldest was offered everything from a partial school day to just skipping the first couple of hours (so he can sleep in) or leaving early as needed to unmarked absences and naps during the day at the nurse's office.

I would definitely reduce homework and busywork but not necessarily courses he wants to take. You'll have to write it into his IEP and still work it out with his individual teachers at the beginning of the semester after they provide the syllabi and adjust periodically as needed.

Thank you for the suggestions, Quantum. Initial diagnostic results indicate narcolepsy, so we may have to implement some of those suggestions. Also going to try some wakeful drugs to see if they help. School seems open to suggestions, so we'll be moving ahead with 504 plan.

If it's narcolepsy, then he'll likely fall asleep in one class or another now and again even if he manages his sleeping/napping schedule very well unless his condition is mild and/or he responds perfectly to meds. I would advise that you include a provision to not wake him unless he needs to move out of his seat for the next class. I would also get him permission to use the elevators at will, leave class to walk around the hallways as needed and get drinks whenever he wants. You don't want him forced to navigate crowded stairways when he is groggy and walking around and drinking water can help him regain alertness at crucial times. I am not sure whether vitamin B6 will help in his case, but it helped DS and other patients with sleepiness symptoms (due to medication to treat neurological disorders other than narcolepsy) although neurologists don't know exactly why it helps. We combined a stimulant with B6 to counteract sleepiness/drowsiness due to other medical conditions, including epilepsy and the meds necessary to treat it.