Myasthenia Gravis Support Group

The drugs really worry me, especially his age. How long can he take them without some side effects. I thought the ivig had less side effects than the drugs? His symptoms actually started as a baby. He was very delayed in his gross motor skills. He didn't walk until he was 2, never actually crawled just rolled, he didn't sit until 9 months. He went through the help me grow program. we saw a neurologist when he was 2. He didn't think anything was wrong. But from the time he could walk he would say my legs are tired. Sometimes he would say they were too tired to walk up the stairs, I thought at that age he just wanted held. But when he would quit playing because he was too tired, I knew there was more to it. when he started preschool it really showed, not that it had gotten worse just that he couldn't control how active he was. That's when I went back to his Dr. She has been great at trying to get us to the right people to figure this out. She pushed for his wheelchair. Once he started school the teachers would talk to me about how he just couldn't keep up physically.
His kindergarten teacher would carry him, and his first grade teacher would push him around in her desk roller chair! He tries very hard, and if you tell him to do it he will no matter how hard it is for him. So everyone has come to trust him. I don't know to many 5,6,7, year olds that stop playing with their friends because it's to much, He's been carried off the playground during recess because he just can't go anymore.
Back to the ivig, we should be starting them by next week, I'm pretty worried. They said they would probably leave a stent in for the 5 days. But nothing more permanent until we know if they help. any idea what the stent might be? I just imagine this plastic piece hanging out of his arm. I'm sure that's not the case, but oh the imagination can roam. He should beable to go to school the week he is getting his first treatment? The nurse did say the amount ordered for him should only take an hour or so. but the Dr. told us 3-6 hours So I guess I will know when he actually gets it. Thanks for your help, Daisy

First, just from reading what you wrote, he has likely had MG since he was an infant. (I did read about that type.) It makes me mad that the docs didn't consider this (and I'm not even his mom)! Our MG doc tells us that IVIg is the most "benign" treatment for MG other than mestinon. I would be extremely worried that the nurse said it should take an hour and the doc said 3 to 6. The faster they put it in, the more problems it is likely to cause. I would have the doctor give clear instructions about the infusion time before the needle goes in. My daughter did have a stent (which is less scary than it sounds- just a little plastic thing that they cover- either placed by the elbow or wrist). However, the day hospital at Lucille Packard says they only allow stents to remain in 3 days at a time because of risk of infection. I would just speak up on day 3 and ask the nurse if she could change it. What a long road you have had to get a diagnosis! Sarah

Sarah,
Thank you so much for the advice. I called Kyver's Dr. asked about the difference in the amount of time for the ivig. They were quite upset and called and got it straightened out. Still waiting for the insurance to approve it.
Thanks again.

Gosh, I've never done this...joined a group, this group, just to ANSWER a post!...I was diagnosed with MG when I was 16. I remember having symptoms back to when I was 12, maybe younger. By the time I was 16, I was exactly like BigMama's child...Wow, brings on some horrid memories here. After a Thymectomy, Plex Treatments (Plasmapheresis for the novice), IVIG, Cyclosporine, 3/4 DAP, Azothiaprine, I don't know the names of all the test drugs I was on. My WONDERFUL, Dr. Howard, at UNC CHapel Hill Hospitals, who I still see today, was and will always be my hero, second to Christ! for all he did for me; and still does. Feel free to email me at socialwrkr4u@gmail.com if I can help anyone. CindyLou