Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment
Hi we have convince the neuro in Atlanta to give 1g/kilo every 11 days as she relapse well noticeably at 15 days.
We have decided not to take the immunosuppressants as she responds to ivig and due to the risk.
We have become pro ivig since the Solumedrol pulse therapy that precipated our madeleine. Yet we have talked about loading doses but on 2gr she lasts 17 days which is why we decided to do the 12 days treatment plans.
My fear is how long will take to be on remission and this is the unknown factor. I have read that kids tends to grow out of this as the system eventually resets. Is this due to puberty change and what is the percentage of this spontaneous break free from the nightmare is again something that I have not found. I hang out on small drops of hope that this will go away. She has no pain just weaknesses in the legs going up stairs and the drop foot. No pain at all and again which is one positive. We just want her to have a normal life all month long and not only 10 days out of the month.
Thanks for the information I take note and hope that your daughter will wean off well. For me the day it happens will be the best day after her birth.