Hi, donip. Welcome. Is that the name you'd like us to call you?

It is indeed very overwhelming to have a sick child. I'm sorry it's been so hard to find answers.

There are two antibody tests that they know of for MG, at least so far: Acetylcholine antibody test (binding and modulating antibodies) and the MuSK antibody test. Did they do both?

There is also a group of genetic diseases called Congenital Myasthenic Syndromes (CMS) that can cause a lack of "acetylcholine" (ah-seat-ill-co-lean) getting to the muscles.

Some ADHD drugs are relatively contraindicated in MG. Is your son on an ADHD drug? Are they helping him with other methods? Have they checked his thyroid antibodies and TSH?

In MG, as Abby has explained, antibodies attack the muscle receptors. Because of that, there aren't as many of them for acetylcholine (ACh), aka. "muscle gas," to get through to the muscles. Think of 1000 people trying to get through only one door. Normal people have many more "doors" for the ACh to get through. That's why muscles become weak in MG.

It's possible that he has CMS. That is a group of genetic disorders, so the problem is not autoimmune but something a person has since birth. Look at your son's photos. Do you notice any ptosis (toe-sis)/eyelid or eyebrow drooping in them? That's how I figured out I've had MG since birth. Muscles around the eyelids and eyebrows can become weak and "droop." And they don't always get equally weak. It can be the right eyelid or the left or both! But it's an important clue to look for.

Does your son have any shortness of breath?

It's hard to talk to an eight year old about this but I'm sure you are good at asking simple questions, like how he feels after walking up stairs. One thing you can do is to check his pulse. Know what his normal pulse is while sitting. Then see how high it gets after walking up stairs or if he's short of breath. Obviously, don't do this a lot but it's a good way to see if his heart is compensating too much for an activity. In MG, the heart beats faster when the muscles get weaker, especially the breathing muscles.

Keep your son out of the heat until you have answers. Why? Heat can make MG much worse. So can lack of sleep, infections, stress, etc. but heat is really bad. If you want to know why, I'll tell you but I don't want to give you so much info that your head spins off.

The best thing to do, after you get the test results back, is to get a 2nd opinion from an MG expert. If you say where you live, people here might be able to give you the name of one. Other neurologists don't necessarily see a lot of cases of MG and it does make a difference.

I hope you get answers soon. Keep asking as many questions as you need to. It's a lot to take in.


Annie