your son’s story is familiar

My daughter was dx with ‘mild GBS’ in early February. After about a week at the hospital, we were sent home with a walker and an appointment 2 weeks later for PT, and a prediction that she would be ‘running around like normal’ in 2-3 weeks. Her problems grew slowly and subtly worse for the first week at home. The walker was a joke. She could use it to get from couch to bathroom, but anything further was impossible (she is a lot better now, but still not walking on her own…).

When pressed, the neurologist said IVIG would possibly cause more problems and that they suspected MG. (She had normal spinal tap, but it was never repeated; I now know that ofter spinals done very early will not show the elevated protein. Hers was done in the ER, about 24 hours after onset. But this led the neuro to question whether it was indeed GBS).

He also said that ‘she will get completely better with or without IVIG, and why would you want to expose her to all the risky side effects.’ The other one was, “we only give IVIG when patients are on a vent” (hers pretty much only affected her legs, though she was very weak overall for a long while). I now know that many others receive IVIG when they are not even as disabled as my daughter was (and is). It is not use only in the direst of situations. But, I believed the doctor as I had no reason then not to.

Well, by the time all was sorted out, and we sought another opinion, and a firm dx of GBS was given, she was past the stage where IVIG will help. I really, really think she should have had it, EARLY, but that is water under the bridge for us now. She is 3.5 months out from onset, and cannot yet walk, but is now improving steadily. I have done some reading and recovery time is typically cut in half with IVIG.

I would IMMEDIATELY begin pushing for another opinion. If it is still progressing, IVIG will likely help.There is a book on Amazon called “Guillain Barre Syndrome”, by Gareth Parry and Joel Steinberg, both esteemed neurologists, and experts on GBS (many doctors, even neurologists, are a little hazy on GBS and its many forms). It will help you in talking to the doctors, and also has lots of good info for you & your son. Also, regarding PT, also ask for a referral NOW. Your primary or neurologist should be able to do this, with a phone call. Try to find a PT who has dealt with GBS before. The main thing is keep his range of motion through simple stretches, retain muscle strength and also to assess things like ‘foot drop’ which my daughter recently got a night brace to prevent. Foot drop can be a permanent problem after GBS if not addressed, and leads to tripping, falling, etc. Until you get a PT appt, I would suggest that he try to switch positions fairly often-vary lying down with sitting with feet flat on floor, sitting on floor with back against wall, legs out in front (stretches hamstrings), lying on his stomach while watching TV or reading–all these will help stretch gently. These were all things our PT suggested. But tell him to listen to his body, DO NOT OVERSTRETCH–only what doesn’t hurt.

Good luck to you and your son! I will be thinking of you.