Help with Treatment!!

My daughter was diagnosed with ITP about 7 months ago at the age of 5 when I noticed petechiae all over her body one morning. I took her to her dr. only to find out that her platelet count was 7 so a trip to the hospital was in order which took about an hour to get there and when they did more blood work her count was 4! She had an IVIG done and her platelet count reached 30 and she was sent home looking like someone had beat her up from all the bruises. Since she has had many tests all being good. the only test they have not done is a spinal tap but the dr. she was seeing said her white blood cell count was great and no need for the test. She goes twice a week for blood work and has had 2 IVIGs which has brought her platelet count up to the most 110 but it shoots right back down so they started her on steroids which began to work but they wanted to wean her off of the steroids bc they say that long term effects from steroids are not good she has went up 2 sizes in clothes. We cant do the watchful waiting bc hers drop completely out without warning. Today she woke up with sore and hurting nipples and they was very red in the center and she has the petechiae back so I am sure her platelets are dropping back out I want to get a second opinion or see a dr. that specializes in ITP I live near Charleston WV and she has been seeing a dr. at Womens and CHildrens hospital but I would like to see someone else so if anyone has any recommendations it would be greatly appreciated thank you and hope to hear from someone soon

Sorry I can't help you - but I did want to say I'm so sorry your beautiful daughter has to be going though this [and you too]. It can't hurt to get a 2nd opinion, I hope someone can help with that. My thought would have been Children's Hospital but she is already being seen there.

Your daughter's doctor is doing the normal protocol when an ITP diagnosis is given. Counts generally drop after treatment, especially after IVIG and steroids. Children often have acute cases of ITP so there is a good chance it will end at one point. Until then you just have to try to stay calm and deal with it as it comes. Not easy, I know.

A second opinion is always a good idea. Please keep us updated.

So sorry to hear your daughter has ITP! It does take a while to get it under control and a lot of patience. My thoughts would be to try and locate a doctor who knows about ITP by searching the internet for doctors in your area and then calling. This is what I would do for myself. There are so many doctors who do not understand about ITP and this has happened to me. You want the best care for her.

Good luck and please keep us posted.