Relapse from Guillain Barre??

September 17, 2009 at 10:00 am

Thanks for your post. Richard’s therapist had worked with one other GBS patient for about a year. This man was only able to turn his head and that’s it. A year later he was riding his horse and motorcycle!! The therapist does a lot of reading about GBS and even ordered Richard a book on this person put his daily journal into a book…so people would know what he went through, and can compare their own situation. Book hasn’t arrived yet.
You mentioned on your posts…about shots. I knew about the flu, meningococcal. But…pneumonia one and tetanus? Richard had cut himself on some rusty metal about 3-4 months before his diagnosis and received a tetanus shot. I wonder if that is what caused it. Wow…food for thought.
Thanks all of you for your posts, information, prayers, and support. Hoping the doctor will call this AM with the treatment set up. Rich is excited to start it! I appreciate all of you, my new friends…I felt so alone, felt like I had to keep the perky smile up to Richard…inside…I was crying! Didn’t want him to know my stress. Didn’t want him to know my spirits were down. Now I have all of you! Thanks so much! Marcia

Relapse from Guillain Barre

September 16, 2009 at 9:49 pm

Thank you so much for replying back, I so appreciate it. First off, I did get a hold of his neurologist today (who hadn’t seen him since he went to rehab on 8/3) He was shocked! He was sadden. Yes, he is arranging for Richard to have the plasmaphesis immediately! He won’t give the IVIG since he reacted to it. He was totally surprised. I “assumed” he was being kept informed by the staff at the rehab place and their doctor, apparently not. We were at the rehab institute for 4 weeks…and nurses, therapists, etc. all told us that this was normal with GBS, the regressing…and it was due to fatigue and that he’d start bouncing back. I cried when they released him…because he was bad (not as bad as he is now). But they assured me, he’d be fine…and gave me a few pointers…that was my caregiver training. Eeeks!! I am a Registered Nurse…so, that helps some…even tho I’d seen Guillain Barre in writing but basically just knew it was a neurological thing. Wow…I am more informed now!! Anyways, he has been in bed for two days because he is so weak, (turning every 2 hours), eating fair, sleeping alot, groaning alot, no breathing problems tho. What do I need to look for in the breathing?? gasping for air?? They gave us an inhaler to use as needed…which he hasn’t used…should I get him to use it routinely till we get to the hospital for treatment? Forgot to ask the neurologist that. Thank you new friends…for your advice and stories…I really appreciate it. Please say a prayer for Richard…and me too! Thanks! Marcia