demand attention

October 13, 2007 at 3:03 pm

I know it is hard sometimes but DEMAND that your daughter get a spinal ASAP or go to the ER and stand firm. Tell the ER that her symptoms are getting worse and you want a spinal to help rule in/rule out GBS.

My then-11 yr old daughter had GBS in Feb 07. She had the flu and then a week or so later began having trouble walking. They gave her a tentative dx of GBS, which they designated ‘mild’ as it mainly affected her lower body (but she was extremely weak and extremely fatigued all over, lost 10 lbs and only weighed 80 to begin with…had very slow heart rate, weird night sweats, all sorts of things). They kept her in hospital for a week but when it didn’t progress to breathing issues they decided it was resolving on its own and sent us home. She was able to walk about 30 feet with a walker at that point, very jerky/shakey and it was very difficult. When they discharged her, she could still stand up on her own, just barely. But a week later, she could not.

The spinal, which was given within about 12-24 hours of onset, was negative. They did not repeat and I didn’t know I should ask them to. I think if she had had it repeated, it would have clearly indicated GBS and she would have likely gotten ivig.

Anyway. Long and short, she was discharged and continued to slowly get worse for a couple weeks, not better. Neuro didn’t really think she was worse (though her reflexes had degraded further, and though she could barely stay awake during the exam). He thought I was coddling her. I wasn’t. I asked about ivig and he talked me out of it, saying it might make her worse, and did I want that? By the time I researched more here and asked again, she was too far in for it to be of help. Our neuro (former neuro) told me it was only for vent patients. That is NOT true. It is the standard of care for GBS. I know that now.

Because she did not receive treatment, her recovery has been very slow. I hope that is not the case for your daughter, but I encourage you strongly to seek another opinion or go to the ER and demand a spinal NOW–today! Maybe it will save you months of struggles and uncertainty. My daughter still cannot walk without crutches. She was in a wheelchair for a long while (though she could use a walker, it was so hard it was only good for really short distances) . She is getting better, but it has been a long and hard road. If I could turn back the clock and demand ivig earlier, I would.

DON’T let the docs intimidate you!
Send me a private message if you want to discuss further. I don’t want to see another child go through this.