Flare ups

My son had not had any additional IVIG, and has been in and out of PT, as needed. The “as needed” means that if I am noticing weakness, or tripping, or falling (as happened this past week), then I get the specialists involved. We have not had a hospitalization since 2001, thankfully. This past week, while playing on the playground he collapsed several times and had problems getting up. His history includes an EMG which did show nerve damage, and he does not have his reflexes back.

As to not believing the Dr’s, I do think that I am the best judge of his “mobility”, so to speak, so I have been an advocate of PT and have also insisted that he be followed by his neurologist, a physiotrist and his primary. They all conclude that he has weakness, and say that he will probably show it more when he is coming down with a virus. The problem is, the collapsing on the playground is new, and I just wondered how others have addressed the continuing care of a child with GBS.

Thanks for your responses.

Eileen