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

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.