New to Board but not new to ITP

My now 4 year old was diagnosed March 11, 2010. We are approaching a year, the dreaded year mark, and hoping this goes away on its own. The reality is it might not and I have to prepare for that. In the beginning I was very optomistic and dismissed any negative talk. Now as we are almost 9 months into it, I have rode the waves of high numbers and low numbers.

With a 3-4 year old it has not been easy. She calls it her "Pokey Dr" and now knows what IVIG means and WinRho. My husband and I are always strong for her but many a times after treatments I want to cry.

WinRho has been our treatment choice. She has had it twice and currently we are going on 3 months of no treatments but her number is holding around the 20's. NOt great but at least we are not in the single digits. IVIG and Steriods only worked for about 2 weeks at a time.

SO I wanted to say hi! Happy there is a board to read about other parents dealing with this and understand.

It sounds like everything you are going through is very normal. After 6-1/2 years of our daughter having ITP, we still have our good "cries" after a hard day at the hospital. It is nothing but a good release for emotions. In fact, I cannot tell you how often we are just tired of having to deal with it. This is a huge stress and very frustrating. At the end of the day, with all of us, our only concern is keeping our kids safe, happy and loved. I am sure you are doing all of that. Everything else will take care of itself.

Stay well,

JJ

I have a recently turned 4yr old son also diagnosed in March 2010.
Our stories sound alot alike!
Our son has IVIG every month and we are now looking into other treatment options due to cost and it just not being a longterm treatment.
We were also hoping to be finished with this by now! I have noticed some changes since he was first diagnosed. He does not drop nearly as fast after being treated as he did in the beginning.
We are dreading the cold/flu season since his counts drop super fast with a cold.
Looking forward to talking!

JL

As I too am new to ITP with a young child, Her numbers have already been below the 10 twice in two weeks and they have done two IVIG'S treatments. is IVIG a permenant fix or a temp fix. Is there something better to try for a 16 month old. I just hate to see her cry every time she has to go to the doctors or be rushed to hospital from the doctors.

In my experience (and research) no treatments are the end all be all of "curing" ITP. As a lot of us have said many times on these boards, there is no cure, just care management until the body decides to take care of itself. What we have found (our daughter was diagnosed 6 years ago and she is 9-1/2 now), is that it is a fine line between treating the numbers or the symptoms (bleeding, etc). I absolutely understand about not wanting to put your child through this kind of an experience. When my daughter was 3-1/2 she would cry and scream at the top of her lungs whenever we even got close to drawing blood. It was heart wrenching. Best of luck to you and know that this discussion group is here for whatever you may need.