My 16 year old daughter diagnosed 3 weeks ago.

My sixteen year old daughter was just diagnosed three weeks ago. She went into the hospital because after a routine blood test her platelet count was 15,000. Did a bone marrow biopsy,(which was normal)told us it was itp, gave her some platelets and we were sent home and told to come into the lab once a week for the next three weeks for blood checks and then see the doctor after 3 weeks. Three days after leaving the hospital with the diagnosis, 14,000 was her count. They called us in for an ivig treatment right away. That was totally horrible. Count went up to 101,000. Extremely bad side effects. Not real sure I want to put her thru that again as after one week the count was down to 44,000. Now today is our third week and she went in for blood work this morning. Will wait for the results today and am supposed to meet with the doctor on Thursday. If her count is really low I'm sure they will want us to come in for another ivig right away. I was extremely close to taking her to the emergency room after her treatment. Not sure that that is the right treatment for her. I hear steroids will make her explode (weight wise) among other things. I'm so scared and confused, and just don't know how to deal with this. I haven't really found anything positive to read yet. Every treatment I read about, sounds awful. I just don't know how to cope with this and really need to find someone that I can talk to.

Hey I totally understand how you feel. My 11 yr old was dx 2/28/11. She was admitted to the hospital for 3 nights and received ivig. Since then she's had another round of ivig and prednisone. Neither of those have worked (everyone's different though). My daughter gained about 10 lbs, got the "moon face" and her face broke out. She has been off of them for a few weeks and the swelling and other side effects are still slowly going away.
The first round of ivig she had the same symptoms minus the fever. On the second round (a couple weeks later) she did better and just had a mild headache.

Initially when they said she had ITP her count was 2,000. The highest we've had it up to 142,000. Today her labs came back and she is at 0...yes I said 0. Her numbers jump around like crazy. The docs are trying to give her till August which is when she hits the 6 month mark (the hope that it cures itself within 6 months like it does in "most" children) before we try another type of treatment since the side effects are more concerning with other meds. The docs in the childrens hemo/cancer clinic are discussing my daughter tomorrow at their weekly meeting to see if they still want to hold out a bit longer before we try anything else.

Yes this is EXTREMELY frustrating and it will continue to be but we can't keep them in a bubble. My daughter is so pi**ed that she can't do sports right now and we've but I just try to find other things to keep her busy...it doesn't always work.

I still get frustrated and I've read TONS of stuff about this disorder. So, I'm here to vent to

Snoopy:

All of the treatments have side effects, but they are temporary. Most people have to find the treatment that has the least side effects for them, that works the best. It can take some time.

My sister had ITP at the age of 16. At that time, there were only two treatments, Prednisone and splenectomy. She did Prednisone twice in a years time and went into remission. She is now 45 and has never had a recurrence. Anything is possible.

Some people gain weight on steroids and some do not. I only gained about 10 pounds on 60 mg's. I lost the weight when I got off of Prednisone. Cutting down on salt and sugar will help, as well as staying active and exercising. It's not a fun drug by any means, but can accomplish the goal of raising platelets. My sister looks back on it now and laughs at herself. She knew nothing about the side effects, just took it as she was told and went on with life. My Mom laughs about how mean she was during that time, but they got through it. Since that time, my Mom, me, my husband and two of my daughters have all been on Prednisone. Ugly, wretched drug, but very common for many things.

The best thing you can do now is learn as much as you can and stay calm.