I know the feeling
My son was 3 when he first started getting weak….they started him on IVig and he immediately started to recover….we did the whole “wait and see” thing for almost 2 years….each time, doc said…”just call us when he starts to get weak. Well, I told him I wanted to catch it BEFORE he relapsed….he was missing school….getting frustrated, just all around BAD for all involved….now, we get a 36 hour treatment every 5 weeks…and his body is starting to recover. He has reflexes now where there were once NONE…so, that means his body is healing. Granted, he may need treatment for a VERY long time to come…but I need him to have quality of life. By the way, the port is the way to go…..trust me!!!!
I will talk to his Dr. about a smaller dosage…as advised….maybe that will work also.
My number is 209-200-0961. It’s a work number and i habd it out all of the time so it’s a good thing…lol….My name is Linda….anyone who reads this and has the same predicament…please, call. My son is currently under the care of Dr. Strober in UCSF.
Thank you and be strong.