My son already has an IEP in place for other unrelated learning disabilities. He is hoping to return to school next months after having to take a trimester off while we were working on a diagnosis.

Are there any high schoolers (or former high schoolers or parents of high schoolers) with an IEP or 504 with recommendations for accommodationas at they pertain to CMS or MG?

I'd like to preface this with the fact that I have a BS in education and worked in special education for a year in a high school.

I think the most important thing you can do is to identify the areas within the school day where your son would have problems with MG/CMS. Have they defined yet if it is MG or CMS? Any biopsy results?

The problem with having a "plan" for someone with a lack of acetylcholine is that it is not "static" disability. For example, someone who is blind has very specific needs that don't necessarily change. MG/CMS is always changing. It can vary hour to hour or day to day. You could say, for example, that he has a hard time carrying books but that is variable too.

From what you said in an earlier post, your son's condition isn't stable right now. Has that changed?

Some basic accommodations would to make sure any environment he is in would be not too hot or too cold. It would be almost impossible to stay away from sick kids but that would be another "risk" to him. Sitting up for too long can put a strain on the trunk/breathing muscles. Taking breaks throughout the day to rest would help.

He would also need his teachers to understand the disease and how quickly it can go downhill. Also, he would need a medical alert bracelet and card with him at all times.

Anyone else have suggestions?

There's a lot of stress in high school and that's one thing that can make MG/CMS worse. Reducing stress is not exactly something often put in an IEP!

A lot of this will be up to your son to realize when he is worse and what he can do about it. Kids have a tendency to push and you just can't do that with these diseases. The "supply" of acetylcholine can't keep up with our "demands."

I hope you get all of this worked out. He deserves to have a good education!

Annie

Thanks Annie. All good points. He is "stable" at the moment. We haven't gotten any results back..no biopsy results and no genetics results yet, so we're still in limbo. With school starting in less than a month, we have to make plans assuming that this is where we will be and what we know....until something changes...and as you point out, it will change.

We tried to start him up on the Mestinon again. I gave him only one 15 mg dose, and within 5 hours it had upset his stomach and he spent the next twelve in close proximity to the bathroom. It wasn't horrible, like before, but it was only one 15 mg dose. The docs at UC Davis changed their recommendations and now suggest that he not try any meds until we get back test results, and if Mestinon is appropriate at that time, they will proceed addressing the GI issues concurrently.

For now, the plan is to go back with a very "light" schedule that is not academically challenging, but will allow him to make progress with credits. Fortunately, my son is very smart, mellow and is great at putting things into perspective, so I hope that will help him manage his stress levels.

Thanks again for all the good advice.

I had another thought. Do they think he has a lack of acetylcholine? Or too much? There are CMS's that do both. Have any drugs made him worse? Not that he would be on any but I'm asking for a reason.

If he has too much acetylcholine, Mestinon would make him worse. Does it indeed make him better? There have been articles on this and sometimes it's hard to know the difference.

Your son sounds very together. Is home-schooling an option?

They don't have a clue yet. They don't even know whether its sernegative MG or CMS yet, but he definitely could have too much acetylcholine. He has only done two "trials". The first was in the hospital when he couldn't move his legs at all, but he was having stomach problems even BEFORE the Mestinon, so that did not go well, although he was able to move his legs after the first dose or so, so it seemed to work, but that may have been coincidence. He only took one tiny dose with this second trial. Neither one is enough to really give us an answer either way.

Since all this started he has been off all drugs, other than what has been given to him in the hospital, so that isn't a clue either.

I just keep waiting for test results to tell us SOMETHING....ANYTHING.

He was on home hospital last timester, but he is a very social person, and has a lot of friends, so he may be one of the very few teenagers in American who want to go school.