Someone posted Dr. Sapersteins # I can’t find it

I didn’t see the number but have you tried Google. Just type in the dr’s number – it might come up.

How long has it been since Kevin’s last IVIG? And how long was it between his initial attack & his 2nd round of IVIG? It seems that both have been long periods of time. If it truly is a relapsing form of GBS or CIDP then he’s actually doing quite well, if you think about it. He can go for long periods of time without treatment.

Emily went to school today feeling achy too. She woke up this morning complaining of her legs & back hurting. I think it has something to do with the weather change. She seems to be very sensitive to that.

I told Emily when her disease started that this is just what our life is right now. We can either get upset & mad about it or we can take it & move on. I know it’s scary & it’s hard to be the mom of a kid that’s going through this but remember you’ve gotta keep it together for the kids. If they see you questioning your faith or yourself then that affects them. You have to pretend that everything is going to be ok – even if on the inside you are ready to crumble.

This is something that I had to learn to do myself. It’s not easy by any means but honestly, it helps.

Good luck with getting some answers.
Kelly

Dawn,
I raised a son who had to attend school mostly in a wheelchair. He could walk into the classroom with AFOs & Canadian crutches, but had to do the hallways with a wheelchair. I won’t say it was easy, but he made up for it by being known as the “smart kid” because he read so much from first grade on. It was extremely hard to watch him on the playground though, as he was either all alone or with his aide. I was teaching in the high school across the street & the playground was in between the schools. Especially hard was to see my other son, just 22 months older, involved in all of the physical games going on. Sometimes it just broke my heart to watch.

Thankfully he never felt pain, as his paralysis was complete. But I did get on his case a lot for being lazy & sleeping a lot. Now I realize that everything he did was so much harder than his siblings (showering, dressing, crawling up the stairs to his bedroom.) I feel guilty about that. But we were always so close & to this day I am still closer to him than his brother & sister, & I am close to both of them. But all we have been through together through the years has made us close. When I was at my worst, he was the one who took care of me during the day as he works afternoons.

Now he has his own place, has a cleaning woman, washes his clothes in the laundry room at his apt. building. My husband does take him grocery shopping once a month, but otherwise he is completely independent. I guess the purpose of my post is a glimpse down the road for you. It all works out somehow, trust me. I wish I would have worried less & just enjoyed him more through the years. I wish I could have looked into the future to see how proud I would be of him today & what a fine young man he turned out to be. He works over 50 hours a week as a sports reporter, driving all over this area with hand controls & his wheelchair to cover sporting events. He loves his job & is very good at it. He has worked at this job since a week after graduating from college in May of 2003; says he loves his job.

Trust me, it will all work out for Kevie. He may just need more rest than a healthy child would…
Blessings, Pam

from vicki

if all else fails call David Saperstein, MD at 602/258-3354 and see he could poissibly give you a referral to a CA doc. Dr Saperstein is one of the MOST GBS knowledgeable physicans ( and he writes for the GBS Foundatioin newsletter).

take care. be well.
gene gbs 8-99
in numbers there is strength