Reply To: 12 year old son with atypical GBS/CIDP

Thanks for the replies! I am glad I finally have a moment to respond because I do have many more concerns and questions. First of all to answer you GH, Seattle Children’s is a teaching hospital so while he has a neuromuscular Dr. that diagnosed him and is “generally” overseeing the treatment, he has had several attending neurologists, several “Fellows” and a couple of “residents”. Along with a Pain mangaement team, a Rehab team, a phsyciatric team, and a surgical team since he is on their floor for the Plasmapheresis. I do feel that this causes confusion and possible lack of understanding about his functional weakness since each person that does the basic MMT muscle testing is using their own interpretations. Plus things get said on rounds that I am not sure where it is has come from. Our last attending (who happens to be the one who told us at our first admission and again at followup that this wasn’t neurological) said to me after I confronted him about not “seeing” the true functional weakness. “Well he was able to stand this morning in front of his commode. That is good” I looked at him baffled and said “No I told you he can’t stand” he bumbled and said “Well I know that was said at rounds this morning..I know he can’t rise but once he was up he stood for a moment” UH NO! he can barely roll to his side to use a hand held urinal I have to bring his legs over for him…it is this that frustrates me because I don’t know what is in his chart or how they will know that this syndrome has stopped and is on the recovery side if they don’t even know what his baseline is to judge decreases.

@ Dawn – it is so good to hear from a parent who has experienced something similar. Chad’s IVIG was started the day after his diagnosis. I believe the neuromuscular Dr. said that while they could go for a 5 day treatment plan they are able to treat with a 2 day course it is just basically done at a faster flow rate once they determine by starting slow that there will be no adverse reaction but apparently is the same amount of immunoglobulin. I will have to research this more. After the two weeks with progressive worsening of his symptoms (weakness) and continued pain they readmitted him and decided to do the plasmapheresis for 5 every other day treatments immediately followed by 2 IVIG treatments again. Now it has been 3 fulls day past that and we are still waiting to see visible improvement. It is hard because he has such bad muscle contractures in his knee area and somewhat in his arms that the pain is pretty intense especially when he is moved or his legs are unsupported and try to fall straight. He still can not move his legs out or in but can rotate side to side a bit as long as they are pulled up near his hips. Your son had also gotten to the point of being unable to walk? How long were his symptoms evident before he received a diagnosis? The complete lack of any resolving of his symptoms is what has me worried. They call him on the severe end and yet he has no difficulty breathing or respiratory involvement (Thankfully) Now I am hearing from PT that all of his recent areas of increasing weakness is strictly from deconditioning not syndrome progression even though he was walking and even attending school (with difficulty) up until his admission on 4/29. Also the ability to pull his legs towards his body while laying in bed was just lost several days ago. So I would find it amazing that he has lost all of his muscle tone and had so much atrophy from really just 2 weeks..I guess it can happen but I would have thought he would at least be able to push the keys on a keyboard as a sign of recovery. It is all just so confusing. I am looking to possibly get a second opinion but there are no other pediatric neurologists in the state of Washington. Do you know of someone who sees children that is well versed in GBS/CIDP and has successfully treated at least several children? I have seen the list of Centers of Excellence but would like to know which ones have treated maybe difficult cases. I would also love to communicate more if you would like to contact me my email address is nunamaker6@gmail.com.
Thanks again!
Annette