mild GBS?

August 1, 2007 at 12:15 pm

My preteen daughter was dx with ‘mild gbs’ in early Feb 07. Because we were assured it was ‘mild’ and that it would all ‘go away soon’–we did not push super-hard for ivig. The neuro talked us out of it when we did push, after she wasn’t improving 2-3 weeks in, said the side effects were horrible, etc. I have to believe HE believed that my daughter would be better quickly, but he was unfortunately very wrong. It is now August and though so much better in so many ways, she is NOT recovered. She was primarily affected in her lower limbs (though there was upper body weakness, it was just never severe). Also, she had severe fatigue for the first 3.5 months.
The fatigue has gotten progressively better. Now, 6 months out, she is 85% normal, energy wise, UNLESS she overexerts and/or is out in the heat and/or doesn’t get enough sleep. Then her mobility suffers and she is just depleted until she rests.

Because she never got any treatment either, what maybe was a ‘milder’ case of GBS is taking a really long time to get over. I am trying to be patient and focus on her many, many improvements. She is using crutches now for short distances. Still in wheelchair for any long distances. Balance, stamina and that sense of where her legs are in space are still off. She’s working hard, but overwork just sets her back so we have to be careful and pace things.

So, you are not alone in a long recovery. Despite what many docs say, you don’t get it all back right away. It takes time and everyone is different.
Sorry to go on so long!!