July 22, 2009 at 12:19 am

Sounds like you have a good plan. I really like that he was receptive to the fact that your local doc might not like him calling any shots. That was very perceptive on his part. I like that he is looking into the anemia thing. My daughter also has two things going on and i think it makes a difference. Some doctors don’t really care about the cause of someones cidp but I think it matters. I am very happy for you and want you to know that we prayed last night as a family for the appt.


July 20, 2009 at 11:43 am

I have also learned so much since being on the forum. Emily’s mom and Dawn Kevie’s mom as well as withhope have helped me to see the light. I started googling things like cidp child and reading everything that came up, which was not much. Some of the info is old and some is newer. I used to work on the medical field and so I wanted to read all those research studies where they took like 25 kids and gave them the same tx or different tx and what happened. I printed off the articles that I could get for free and started highlighting things that were interesting or pertinent to our situation. At the end of every article it would reference other articles about child cidp and then I would want to read those. Sometimes it would tell me that I had to pay for thost articles and i did not want to. I inquired at my local children’s hospital about it and they had access and they printed them all for me for free. I have read all those and am now ready to get my sencond batch.

Some of the children were treated with ivig and some with steroids and the oucome of both. We also had to go on a journey and finally found a doctor who agressively wanted to tx our daughter. We have googled his name and his is more than qualified to see our daughter. Dr. Jerry Mendell. He has ordered weekly ivig for three months for our daughter and she is 2. She started looking better after about three weeks of weekly treatments. I contacted Dr. Lewis in Michigan and he said that he does not see peds and referred us to Dr. John Kissel who then referred us to Dr. Mendell. I am so sorry that your doctor does not want to agressively tx. Come to Ohio, we would love to have you and there is an air force base in Mansfield, Ohio. READ READ and then READ and some of the same names and situations will keep coming up and you will begin to see what direction you need to go. My daughter has never been on steroids probably due to her age but we will do whatever for her to get better! I trust Dr. Mendell and you need to trust who ever you go to and rest in that and the Lord’s direction. We are on a journey with our kids.