Response to ya’ll

March 28, 2009 at 3:56 pm

First of all, I want to thank you guys for your interest and help. When we were admitted the first time to the hospital, they thought Selah had JRA and then said that the tests that they ran and with no family history they pretty much ruled that out although they said that it is still a small possibility. Yes, they did a spinal tap and we watched them do it under conscious sedation. There was protein and they said that this helped with the GBS diagnosis. For some reason I do not have a copy of this but I am working on obtaining this. The IVIG appeared to help her a lot the first time she received it and a little the second time but not near as much.

I am a little confused about a few things. I have read about 6 sources on CIDP and most of them say that CIDP does not have a presenting virus and comes on a lot slower then GBS. I have read info on GBS and CIDP from NORD, NIND and what the foundation sent me and I think they are very different. Even now, most of the doctors do not think it is CIDP and I am relieved. I have to say that this is very confusing. I took Dawn’s suggestion and started a folder and it makes me feel better. Thank you for the suggestion.

I agree with the comment made from WITH HOPE in that Selah went weeks without walking and no one wanted to do anything about it. I tried to make some things happen and it didn’t help. Selah has never had an MRI if her knee. They should have done that when they did the 1 1/2 hour one on her head, spine and pelvis! She did have blood work for Lymes at my insistent request that came back negative. What should I look for on Selah’s blood work for Leukemia indications. I think they ruled this out with the spinal tap and Nerve Conduction Study. She has never been on steroids unless Naproxen is a steriod. I will look at Selah’s bllod work to see if anything on there is named CK. After much pursuing on my part we are seeing the Chief of Neurology at Nationwide Children’s Hosptial and his name is Steve Roach. He is very published and is considered an expert worldwide in childhood stroke and does not claim to be an expert in GBS. He is also on staff at Ohio State Medical Center. He said he has gray hair for a reason and has seen a lot of GBS but not much CIDP. He is baffled by the Fifth Disease thing and a little intrigued. I told him to do a special study and write a paper on Selah but like With Hope said, the jury is still out and I am praying that the ultimate healer will step in before the midnight hour. Look forward to hearing from anyone who feels led. Kevin is in our prayers and I do not say that flipantly!