2 year old

April 3, 2010 at 9:20 pm

My daughter is now three and was two when she was diagnosed. We went many rounds before we got a diagnosis. Your son is a little more like our situation than some of the other children on the website in that they had to completely learn to walk and crawl and sit up and all that. My daughter got intensive rehab inpatient at the local children’s hospital and could barely walk when discharged. I thought they were going to send her home with this brass walker but they didn’t. We went all around that globe with phone calls and emails and ended up back where we started with a different doctor who has had MANY children with cidp. He has even done some research on cidp and has written a book. He immediately started Selah on weekly ivig at the infusion center at the hospital. It was hard but we did it and when we saw major progress, we really were ok with it. My daughter is a peripheral stick and does not have a port. She has good veins. She currently weighs 32 pounds and gets 7 1/2 grams of ivig every other week, but she got weekly 7 1/2 grams until she came back to baseline as our doctor calls it. It sounds like our doctor and mayo are in agreement and your doctor is odd man out. I am going to private message you with my phone number if you need to talk. You have been given great advice by Dawn and Kelly. They have both helped me so much. I am kind of a researcher and I think I have read everything there is on children and cidp. ha