confused
 

:( my son is eight yrs old and for the past 2 months i have notice a tremendous difference in him my child is adhd and runs around like a energizer bunny full of energy then one day just started slurring when talked, his eyes are very droopy, and randomly falls he says his legs and arms get weak the doctors hv done so many test on him and cant find out what it is and now they drew blood for myasthenia gravis can some explain what this is? please:confused:

Hi, and welcome. You must be terribly worried about your son. This is a great place to ask questions.

Myasthenia gravis is an autoimmune disease. That means that your immune system, which is supposed to protect you from germs, starts attacking some part of your body by mistake. No one knows why. In myasthenia gravis, the immune system attacks certain cells in the muscles so that they can't communicate well with the nerves that tell them when to move. That makes the muscles get tired easily, and become weak.

We don't think about eyelids as needing a lot of muscle strength, but keeping your eyes open requires constant use of the muscles around your eyes. That's why people with myasthenia often have droopy eyelids (ptosis). With myasthenia, your muscles usually get stronger when you rest, and get tired quickly when you use them. Most people with myasthenia are stronger in the morning and weaker in the evening. Are your son's eyes droopier as the day goes on?

I'm glad that your son's doctor is testing his blood. They're looking for the antibodies that might be attacking his muscles. If they find them, they will know for sure that he has myasthenia, and then they can start treating him. There are medicines that work well. A lot of times they also remove a gland in the chest called the thymus. This works very well in a lot of children--sometimes it cures them for good.

I hope this helps. Please feel free to ask any questions, and let us know what the tests say.

Abby

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.

:hug:
Annie

thanks for all the anwsers,hopefully they can give me a anwser soon my soon does complain he is tired after he does alot walking outside, running, playing his is pretty addicted to his games on the playstation and thats the only thing he wants to do he can he loves going swimming and will swim with lots of energy the gets out so exhuasted he then wants to just sleep. yes he is on concerta 38 mg but has not took it for the last month he also was diagnosed with mono ugh this is so stressed outhis attitude has also changed big times:(

Mono last month? Had a positive reaction to the Mono spot test?

It can take months to get energy back from Mono.