child with MG
 

I am the mother to an 8-year-old son who was diagnosed with MG in March this year. Anyone else out there been where I am going? My little man was also diagnosed last year with Grave's Disease. Any and all information would be tremendously appreciated. :wink:

I'm so sorry to hear you and your son are going through this. I was recently diagnosed with MG so it's still new to me, too, but IT CAN BE CONTROLLED! I'm part of a support group here in San Antonio, Texas, and they know of a set of twin boys who (if I'm not mistaken) are about your son's age. I'll get in touch with the group and see if I can get her contact information, or at least pass your information along to them. These little boys are doing great, so please don't give up. I think the scariest thing is the very nature of this disease; you never know what kind of day you are going to have.......Have they started yout son on any meds yet? How did the docs know it was MG? I do know that YOU are going to need a lot of support, too, so please feel free to contact me anytime if you want to talk. I also have a son and he is the love of my life, so I can't imagine what you are going though right now, but would like to help. There will be bad days, but soon the good days will outweigh them, so don't give up! I'll also keep you and your son in my prayers. Take care! Erin

I am also new to this forum and to MG. Just wanted to tell you that I feel so sorry that a child has to go through something like this. I really hope you will find the informations you seek, and that he will be ok.

With a couple of autoimmune diseases under his belt... perhaps a visit to a rheumatologist would be in order? You probably do not want to see any other doctors, but with one autoimmune, comes more and well, it may help his quality of life in the long run?

My son currently takes Prednisone....we have begun weaning him off, he is down to 70 mg now. Mestinon, 45 mg every 4 hours, and several meds to combat the side effects of the steroid and the mestinon. Along with his synthroid due to his Graves disease. We test his urine daily and blood monthly for early signs of diabetes. His blood tests are coming back borderline now. The doctors said almost always with 2 autoimmune disorders comes a third. I am curious why a rheumatologist? You think possibly rheumatoid arthritis? My dad was recently diagnosed with that. Again thank you for your support and information.

No, I am thinking that he has several auto-immune diseases and the rheumatlogist may be able to help find if there is anything else that can be done. And they run in families as you can see. I was not thinking any particular disease.

Yikes on the steroids - the side effects especially on a growing boy can be horrid. That can give him Cushing's syndrome on top of everything else. The pred would be the diabetes cause BTW. When he gets off the pred, the diabetes should go away (I had cushing's from a pituitary tumor... I hate steroids).

Hope he can get controlled on the MG. It is no fun.

Unfortunately, things have gotten worse. We are heading back to children's hospital this eve to begin plasmaphoresis. We have decided probably wasn't a good idea to start weaning steroids, so we are going back up on them just long enough to start azithioprine. Hope this works for him. He is so tired of feeling just plain crappy!! Will let you know what happens when we get back in a week or two! Any info on this new drug? Appreciate all the help again!

ASk about IV IG too!!!!!!!
 

I forgot to tell you to ask about IV IG too! I don't know much about plasmaphoresis, but I DO KNOW THAT I RESPONDED GREAT TO IV IG. In fact, the hospital where I was admitted has several people that come in monthly for it for autoimmune problems. I don't think it's as invasive as the plasmaphoresis procedure.........

I hope all is well with your son today!
 

I hope all is well with your son today, and that the plasmaphoresis gave him the energy I got from my IV IG:)DO NOT GIVE UP HOPE FOR REMISSION! THIS DISEASE CAN BE CONTROLLED!KIDS ARE A LOT TOUGHER THAN YOU THINK! I know you are going to be really busy in the near future, but if you need to talk, please let me know!:D

Thinking of you and your family
 

I'm sorry to hear about your son. Reading your story brought tears to my eyes. I was diagnosed with MG only 3 weeks ago...I also have a young son. (He's 5) I have been struggling while the doc tries to find the right med and the right dose. I can't imagine being an 8 year old and having to deal with all the things I am right now. I can't imagine being a parent that has to see her child go through all the things your son is. I will keep you and your family in my thoughts and prayers. :hug: