New diagnosis, 23 month daughter in hospital, did not respond to IVIG

    • February 5, 2017 at 9:39 pm

      Hi, I’m hoping to get some advice, or comfort. My 23 month old daughter became ill just about 2 weeks ago, was hospitalized one week ago with suspected GBS. She received 5 days of IVIG but they feel she has not responded well, and are now considering other diagnoses, including CIDP. She cannot walk, sit unsupported, or swallow thin liquids. I am so scared. She also is in pain. Do any of you have experience with your children not responding to IVIG the first time, and also, how long did it take your children to see improvement? Anyone have no improvement? Any clues or advice you could give me would be appreciated.

    • February 6, 2017 at 12:05 am

      I don’t have any first hand experience with a child having the disease, but I offer you these publications that may be helpful:

      This one is more general and can give you a really great understanding about what to expect and what to do:

      This one is more technical and can offer your doctor some ideas to better help him/her help your daughter:

      Your daughter is young and can overcome this disease more easily than some of us older folks. I hope that that, coupled with the info in the cited publications, will give you and her an advantage to overcome this disease quickly.

    • February 6, 2017 at 9:20 am

      Hi Mary. Please lookup Centers of Excellence on the GBS-CIDP Foundation website and see if one is near you. They should have pediatric experts in gbs. Also, it is said that if ivig does not work it is possible that it is not gbs. Try another round and if it still does not work, seek another opinion.

    • February 7, 2017 at 12:16 pm

      Jim provided some great information as usual. Keep positive and remain strong! She’ll make a full recovery! Sometimes GBS just has to take its course. I had several 5-day courses throughout my care and it did nothing for me, but it was definitely GBS as they ruled everything else out. Plasmapheresis may be another option, but it is more invasive as it requires a Quinton catheter to be placed by the neck or clavicle for treatment.