Hi, Flhardy. Welcome to the forum!

I'm sorry your young daughter is going through all of this.

I have some questions for you, if you don't mind. Did your daughter test positive to the AChR antibodies or the MuSK antibodies? If not, it is possible that she could have one of the congenital myasthenic syndromes. The syndromes are genetic, not autoimmune, so steroids or other immunosuppressants wouldn't help. So it's important that they know for certain if it's MG or CMS before they launch into such life altering drugs, especially for someone of age 3!!!

Are you in the US? UK? Somewhere else? I'm asking because the approach to care can be different in other countries.

I can't really give you any reassurance about steroids. Is your daughter having great difficulties? Is she having trouble breathing, swallowing, or moving? What is her general condition like?

Her immune system has barely begun to develop, not to mention her brain and other organs. Giving a steroid is a HUGE decision and often the side effects that occur can lead to needing more drugs (not even associated with MG).

Do autoimmune diseases run in your family?

Sorry for all of the questions, but I'm trying to help. Whatever you decide to do as far as treatment options is between your and your daughter's doctors. It's important to determine the exact cause of symptoms first. An EMG is not specific to MG. A Single Fiber EMG is more specific, but not diagnostic! That's why I'm concerned about whether they have even considered CMS.

MG is an overwhelming disease for adults. It can be managed, but doing so involves much more than drugs alone. There are so many things that can make MG worse, such as too much activity, not enough rest or sleep, infections, hot weather (cold weather for some), stress, surgery, some drugs such as Ketek and quinolones (MGers should not take those) and other drugs, etc.

If you look at this page, you will see how many variations of MG, CMS, or LEMS (Lambert-Eaton Myasthenic Syndrome) there are. And they all have different treatments.

http://neuromuscular.wustl.edu/synmg.html

If it were my daughter, I would want to make certain exactly what disease she has and then discuss treatment options. There have been many examples of patients being misdiagnosed, some of which are listed on the MDA website: www.mdausa.org or http://mdausa.org/publications/facts...sthenia-gravis

Predinisone doesn't help with an IVIG headache, only drinking sufficient fluids and taking Tylenol does. If she gets meningitis (which can be viral or bacterial) from IVIG, it is not an autoimmune reaction, so I'm not sure why they said steroids would help. Unless she is having an adverse reaction to IVIG, then Benadryl or steroids would help. Even I'm confused by their logic!

Did that small amount of steroids make her condition worse, better, or neither?

Please let us know how else we can help. Are you confident in her doctors? Does she have an MG expert?

Don't forget to take care of yourself, too!

Annie