Reply To: 4 year old with CIDP – New to Forum seeking support

May 31, 2012 at 10:08 pm

Chettri,
If your son is relapsing that badly @ 3 months, he probably starts @ 4-6 weeks. If your doc does not recognize that he has to stay ahead of the relapse and that at best ivig only lasts a maximum of 42 days, he does not know enough to be treating your son. If he is willing to listen to you and at the very least do every six weeks, the max 42 days then try that if going to other docs is not doable for you. At that time, you will have to watch your son closeley and maybe even have the doc approve every 4 weeks 2g/kg. Just in case you were not told, the port needs to be flushed before your 3 month schedule. Every 30 days, I think you can push it to 6 weeks, not worth itto me thoughto chance it. You mention the port haas not made things easier, what is going wrong? Do they use emla cream? If so, how long do you leave it on? When you put it on, do they give you a tegaderm patch to keep the cream in place? If so, switch to glad press and seal saran wrap. It comes off much easier than a tegaderm.

You have to approach the doc soon or find a new doc soon. Healing takes place at the rate of a mm a day, that is something like 12 inches or something like that a year of healing. But the healing only happens if there is no additional relapse. Once another relapse happens, the healing starts all over from the toes up again. As well, each time there is repair, it is not a full repair, areas are skipped along the nerve and the repair is incomplete.