Hi all, I am glad to find this forum. My daughter was diagnosed with MG in April per EMG. I have been unable to find valuable information on young children with MG. Currently her only symptom is ptosis and no muscular weakness. She is two weeks post op thymectomy without thymoma. She is on Mestinon and takes Prednisone for three days following IVIG due to headache. She has been on the IVIG since June. We have not seen much improvement with the IVIG. We met with her neuromuscular specialist on yesterday. He recommended stopping the IVIG for now and considering 5 day hospitalization to begin prednisone. We were provided lots of information on prednisone and the side effects really scare me, especially for a 3 year old. I am beginning to feel like she is a guinea pig and that we are doing too many things to her little body. I have been able to find really good info about IVIG on the board and some prednisone information. I just wanted to see if anyone can provide me with some type of reassurance to go ahead with prednisone or should we just stick it out with the IVIG. This has been a tough uphill emotional battle for me and glad to be speaking with other MGers. Any words of support or advice is greatly appreciated.

Welcome to the group. You found a great place for information and support.

The MG Manual has a section on Juvenile MG.

The onset of immune-mediated MG before age 20 is referred to as juvenile MG (Andrews PI, 2002). The pathophysiology is the same as in adults. Twenty percent of children with juvenile MG and almost 50% of those with onset before puberty are seronegative (see Seronegative Myasthenia Gravis, later in this chapter). Many children who are initially seronegative later develop AChR-antibodies (Anlar B, 2005). The female:male ratio in children is 3:1, compared to almost 1:1 in adult-onset MG. Thymomas are rare in this age group, but the few that we have seen were malignant.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 23

The MG Manual is free. You can download and view it off-line, and you can print it for easier reference. Search the document for "children" and "juvenile". There is information on children and MG sprinkled thought the manual.

So sorry you and your daughter has to deal with this, particularly at such a young age. Some of the others will respond soon with more details about MG and children, and with information on thymectomies. I believe that the young have the best chance of a thymectomy producing positive results, although it can take months for improvement.

BTW did you doctors tell you that heat adversely affects MG patients? It makes the symptoms more severe. Try and keep your daughter as cool as possible.

Take care,

-Mark-

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

Flhardy

Just wanted to let you know that, if you are on Facebook, there is a pediatric Myasthenia Gravis group. I've noticed a lot of questions on there from parents about whether to give their children prednisone.

Lisa