GBS Nuerologist in IL or MO
AnonymousJanuary 5, 2008 at 11:08 am
I’m new here. My mom was diagnosed with GBS on Thanksgiving night and has been in ICU on a vent and with feeding tube since the Friday after turkey day. The hospital says we have to move her to an acute care / long term facility now for her recovery. So far she only moves the corners of her mouth, slightly wiggles her jaw and blinks to communicate (once for yes, twice for no). My husband printed a chart with the alphabet and numbers one through nine for her to help communications so she can tell us more about what she thinks or feels. Problem is, she is already so depressed (I would be too after 6 weeks stuck in my own head) she is not too receptive to “talking” about anything.
Anyway, my question is: What facility / neurologist in the St Louis or Central IL area can best help with the long term recovery she now faces? She needs to be gradually weaned off the vent and hopefully the feeding tube shortly thereafter.
I see many of you advocate serious PT daily – at the moment she only gets once a day for about 15 to 20 minutes, Monday – Friday. I gather this is not often enough?
I appreciate any help or advice you all can provide. I’ve got the information packet coming from the gbsfi site and my brother already received one down in MO (I live in IL). I also have a couple of books coming (“Guillain-Barré Syndrome: An American Academy of Neurology Press Quality of Life Guide: From Diagnosis to Recovery” & “A First Step: Understanding Guillain-Barre Syndrome”) in the mail. As soon as they arrive I am returning to MO to continue supporting Mom with daily visits and also to help my sister and father research some facilities the hospital has recommended in St Louis area. We want to see them, interview staff and hopefully speak to some current and previous patients to see how they feel about the level of care received there.
We also have to figure out how we are going to get lodging (cheap or free) for the family to be close by. Again, any information you can provide will be greatly appreciated. We are :confused: and 😮
AnonymousJanuary 5, 2008 at 9:52 pm
hi & welcome,
if your mom is still in icu, do not let them move her out.
‘I see many of you advocate serious PT daily – at the moment she only gets once a day for about 15 to 20 minutes, Monday – Friday. I gather this is not often enough?’
we do not advocate serious pt. if fact it is discouraged. nerves need rest to heal. pt/ot must be recovered from in 12 to 18 hours or it is too much. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 6, 2008 at 9:58 am
She is in ICU because of the vent and feeding tube. Yet hospital board says she must go to another facility. What do we do? At present we are trying to find and visit facilities in St Louis area that can take care of her until recovery is far enough along for her to come home and have out-patient therapy(s).
Can we stop them from moving her? How long do we wait until she is movable (ie: when is she going to be ready to move)? What signs do we wait for? I have never heard of this affliction before and have no idea what to do or say about her treatment except what I am discovering as we go along.
Any advice is greatly appreciated.
January 6, 2008 at 5:26 pm
Hi and welcome,
I am sorry to hear about your mom. Four years ago I found myself in similar situation…paralyzed, in icu unable to talk, breathe or eat and infected with pneumonia I caught in the icu. I was moved to a specialty hospital that specialized in treating breathing problems (RML in Hinsdale, IL) until I was weaned from the respirator(about 2 months). From there I went to RIC (Rehab Institute of Chicago) in downtown Chicago.
I did receive minimal therapy during my stay at RML where they mostly did the stretches to maintain the range of motion. I agree with Gene that serious pt is not recommended in these early times. If your mom has to be moved try to find a hospital close by until she is weaned from the respirator. She will need you to be close by so you can visit often.
I knew nothing about it and never heard of GBS but I must tell you that the doctors don’t know much more. I appreciate that they kept me alive in those early days but did not help me at all after that. There is no treatment for GBS. Initialy they may filter the blood using the procedure called Plasma Phoreses (PP) to get rid of the antibodies that are destroying the myelin sheath or give infusion of Immunoglobulin (IVIg) that contains various antibodies from many other people for purpose of minimizing the damage. We still don’t know how helpfull both priocedures are. Our own body will regenerate the myelin sheath that has been destroyed but it will take time. That has been my experience. I am still recovering.
I am sorry to inform you that the road ahead will be long and difficult but there is hope because majority of people recover fully but it may take years.
I hope this is informative for you. If you need any more specific info, please contact me by sending a personal message by clicking on my name at the top left of this post.
Best wishes to your mom and to your whole family. My thoughts and prayers will be with you.
AnonymousJanuary 7, 2008 at 9:41 am
When I questioned her neurologist about another round of IGiv he indicated that no study shows any benefit to this and sometimes it can actually cause harm. Yet, I see where many here have have multiple IGiv’s and the blood filtering procedures over time. Is this something I should push for as time progresses (if there is not significant progress toward recovery)? Can anyone provide a case study that I can site for an example of why she should have more treatments?
I am so glad I (well, my husband) found this site – everyone here has dealt with this and that helps (having a sounding board, so to speak).
AnonymousJanuary 7, 2008 at 11:42 am
additional ivig or plasmapheresis [pp] only has a chance of being effective if there is still the bad gbs antibodies in his blood. if he is not getting worse, it’ll prolly do no good. improvement has nothing to do w this, just no decline. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 10, 2008 at 9:58 am
I had very good care at Barnes-Jewish Hospital in St. Louis, if possible you want to get either Dr. Lopate or Dr. Parks, they both assoc. professors at wash. U medical school and specialise in neuro-muscular disorders. Dr. Lopate is my neuro. but Dr. Parks also worked with me when I first went into hospital and they are both very fine dr’s. When I went to rehab. I went to the Rehab. Institute of St. Louis and had pretty good luck. The head therapist’s name there is Stacy, she has worked with several people with either GBS or CIDP and knows hard to push and when to stop without overdoing. If you have any questions about barnes or the rehab. institute please don’t hesitate to ask. I’ve sent you a PM with both my e-mail and my cell #.
AnonymousFebruary 7, 2008 at 9:58 am
IVIG sure seemed to “help” my son more than just stop progression. He was completely unable to move his legs…. then after one round of IVIG he was immediately able to lift his knees so that his feet sat flat on the bed. One more round of IVIG and he could walk with a walker.
He was 16 at the time, so maybe his age was a factor in his quick recovery. Five months later he was ready to compete on his high school varsity basketball team at nearly full strength. We realize he was very lucky!!!
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