TOPIC:

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

Where's your closest University Hospital? I would suggest going there for a second opinion.

Linda A. Stout, MD is a pediatric hematologist at Marshall Health and is on the faculty at Marshall University's Joan C. Edwards School of Medicine in Huntington, WV. She has published regarding ITP (www.ncbi.nlm.nih.gov/pubmed/16502732) and is a participating physician of the Intercontinental Cooperative ITP Study Group.
marshallhealth.org/services/pediatrics/our-doctors/our-doctors-details/?id=346

From the PDSA:

The treatments for ITP in children can vary depending on the child’s platelet count, activity level and bleeding symptoms. Whatever the treatment regimen, it is important for the child to have as normal a life as possible. Because many children recover and the treatments can be difficult, some pediatric hematologists suggest a watchful waiting approach.The 2011 American Society of Hematology guidelines recommend that children be managed with observation alone if they have only mild or no bleeding symptoms, regardless of platelet count. New treatments for children are in Clinical Trials.

Bruising and petechiae can be scary-looking, but are considered mild symptoms. Persistent mucosal bleeding generally requires treatment.

www.bloodjournal.org/content/117/16/4190.full
The American Society of Hematology 2011 evidence-based practice guideline for immune thrombocytopenia
1.2.A. We recommend:
Children with no bleeding or mild bleeding (defined as skin manifestations only, such as bruising and petechiae) be managed with observation alone regardless of platelet count (grade 1B).