Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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coping with a teen with ocular MG

deleted_user
deleted_user
My daughter was diagnosed with MG in 2006. For three years her only symptoms have been double vision and occasional droopy eyelid. She had been on 4 30-mg. tablets Mestinon per day, and unless she way overdid things, she was fine. Now she is 16. The day after her driver's test, she started going double very early in the day. We recently had her dosage increased to 2 30-mg. and 2 60-mg. tablets per day. It has been less than a week, but she has seen absolutely no improvement. I don't want her to overdose on mestinon; on the other hand, I'm wondering if she still should go up? We have a great neurologist that I trust, so I guess I'm asking, any parents of children who went through some big MG changes during adolescence, and how did they work out?
deleted_user
deleted_user
Having a doctor you trust is very important. Make sure you address these concerns with him. Your daughter may need additional treatment options if her MG is getting worse.
Best of luck and God Bless.
Sarah100
Sarah100
My 14 yr old daughter has been diagnosed for just over 1 yr with generalized MG (with many more symptoms than just ocular). When she has double vision the neurologist says covering one eye briefly may help. Your daughter's mestinon dose doesn't sound too high to me (but I'm not a doctor). My daughter has been on as much as 60 mg. every 3 to 4 hrs. (Though the higher the dose, the more gastric side effects.) My daughter experienced a noticeable worsening of symptoms just before and during her period which the birth control pill resolved. That's something rather benign you could try. Good luck. Sarah100
deleted_user
deleted_user
I agree with Sarah100. Your daughter really isn't on that high of a dose. I take 60 mg every 3 hours. There are also other drugs she can try if mestinon isn't enough.

Another factor that could be at play with your daughter is stress. Stress is one of the many things that can increase MG symptoms. If I get really nervous, like before public speaking, I have am immediate wave of weakness in my eyes and mouth. Your daughter may be really nervous behind the wheel and maybe it will get better when she is more comfortable.
deleted_user
deleted_user
Excellent advice from others about teen with OMG. She was homeschooled until this year, when she entered public school as a sophomore, and I've been waiting all year to see how the stress would affect her. She lost weight almost instantly (she was a couch potato before), but is acing her classes and loves it. So I was surprised she started having problems later in the year, but maybe the stress has been building. Even good stress, I suppose, can affect it, like the excitement of a first date? (which she also recently had)
deleted_user
deleted_user
Agree w/ Reply # 1 - Having a trustful Doctor is the Most important thing. Stress is the worst thing in any case. She is young - so even if the medicine has just been upped, give it some time, but teach her to not let things get to her. Maybe the driving test was stressful on her. MG can be controlled but the Stress Must be controlled as well. As anything else, it's mind over matter. God Bless and Take Care..
geohab
geohab
You can get some good insight into ocular mg, progression of the condition, and ways to cope from a video with Chicago opthalmologist Dr. Thomas Mizen...It's on youtube; the entire video is put out by the Illinois MG Foundation.