This Is MS Multiple Sclerosis Knowledge & Support Community

Hi all, glad I found you guys. It has been so hard to find these sort of site for kids with MS.

Back in July, my son was put in the hospital for stomach problems. While there he started seeing double. 1st MRI was done and did show lesions. He then was sent to a childrens hospital. They then did a spinal tap and more labs. He then was DX w/ Encephamylitis(sp?) said possaible MS, but watch and wait. Then he started with more severe headaches in Sept. another MRI was done and I got that God aweful call this past Wednesday. My son that will only be 9 on the 23rd does have MS.

He is to see the Dr. again on the 25th. They are talking about starting the avonex then.

so far, I am having a hard time telling what is a normal 9 year old, growing up and going through alot and symptoms of MS. He does have alot of problems going #2 and headaches, he takes topamax now. He also has ADHD. He has been moody, and seems a little depressed since July. But when I talk to him he says nothing is wrong.

He knows he was sick in July and he knows we have been testing, but he swears he is fine. So I havent talked to him about it yet. Any tips on how to talk to him about having MS and starting weekly shots?? He has always been so scared of shots( me too) Also I do not want to scare him about theses aweful things that may or may not happen to him. I do not want him to watch and wait or be scared out of being a little boy. Please send any tips my way. Thanks so much.

Kristy

You're right to keep the facts of MS from your son. Kids need to be told what they need to do and not to have all the why's and wherefore's explained to them in great detail. An adult needs the details, most kids don't.

Our daughter just wanted to do what she had to do to put up with having MS so she could quickly go back to her life being a kid. In many cases, that's still true but now, at 20, she's learned a lot more for herself, knows her own limitations, etc. so she's able to take responsibility for it.

As far as shots go, I don't have any tricks. He'll get used to it and so will you. After awhile, it just becomes part of the new normal of having a child with MS.

There aren't any magic bullets with MS. It got easier for us once we realized it isn't an emergency situation although it often feels like that. MS is a chronic issue.

I hate to disagree with you, but our 8 yo son just went through 5 weeks in a hospital and 3 relapse afterwards and we felt it was very important to keep him in the loop. Maybe I'm not disagreeing so much as to say every child is different and you know if your child will be able to handle it.

Christian can rattle off his diagnosis, what it means, and his meds to anyone that asks. He likes shots as much as your son, but has had to deal with over 18 IV infusions in the last 8 months and has held up like a trooper.

That doesn't mean every child will handle it like that, but we couldn't keep it from him and he also wouldn't let us. One other thing, he'll tell us right away if something isn't feeling quite right - so understanding what you have may be helpful.

It's difficult and I hope your son and your family are doing well - let me know how the MS meds are working. We haven't put Christian on any meds yet (he's been in remission since Jan).