Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment

Hi there.

Your daughter’s symptoms sound an awful like my daughter’s symptoms. Emily was 4 was she was dx’d with GBS & then later on, CIDP.

She too had double vision – it’s called diplopia. And her relapses ALWAYS started with eye issues. Her right eye, at one point, was turned in looking toward her nose.

Has your daughter had an MRI with contrast of her brain to check for inflammation? Emily had inflammation on her cranial nerves (also along her spine from the lower lumbar down).

It took MASSIVE amounts of IVIG to get Emily back on track. She was getting around 200 grams a month for awhile. It’s been 7 years since her diagnosis & she lives life like a “normal” kid. We just stopped her IVIG to see if she can go without it (fingers crossed!).

When Emily was 5, she was getting IVIG every 10 days. We saw a specialist who decided to lengthen the time between treatments & give her Prednisone. After 2 months of the ‘roids, she went from relapsing every 12 days to every 9. I took her to another dr & we tapered her off the ‘roids. We found that she would need IVIG every 7-10 days, when she was relapsing every 12. We slowly lengthened the time between treatments but she always received the same amount (20 grams).

You said something about taking your daughter to Baltimore? Have you contacted John Hopkins Hospital?

Kelly