Hi all,
It's been a long time since I've written anything here, but we have a daughter with chronic ITP. We're coming up on the six year anniversary and she is almost 9 years old. We are facing some tough decisions for her care in the next month and I was hoping you might have some advice.
A brief history: She was dx at 3 and since then we have treated with steroids, IVIG, WinRho and Dapsone. She had a severe reaction to WinRho at one point, so we can't use that anymore. IVIG gives her a boost, but usually not for long. Plus she gets severe migraine-like headaches for a day or so sometime after the infusion. Steroids give her a boost, but give her the puffy face, hunger and mood swings. Dapsone was a God-send to us for three years - it kept her stable around 30K with no side effects. However, it stopped working for us this year even though we have increased her dose. She seems to be starting puberty (developing breast buds) so maybe that's why things have changed. In any case, if we don't treat her with something, her platelet counts keep dropping. We always treat her once she gets below 10 because we aren't comfortable with those lower counts. She had a lot of nose bleeds earlier in the fall with these lower counts, but we've been using AYR gel in her nose every night plus a humidifier so we haven't had bleeding issues for a couple of months now.
We are currently waiting for her to get a breath test to test for the H. Pylori virus because there are some studies that indicate that virus can lead to decreased platelet counts. Has anyone else done that? Also, I've read that Celiac's disease can lead to decreased platelet counts. Has anyone gotten their child screened for that?
We are scheduled to get a second opinion from Dr. Michael Tarantino in IL. (We go to the U of Michigan for our hematologists.) Has anyone ever seen him? We'd love to hear good and/or bad reports on him. If you've gotten a second opinion, I would be curious to get advice on how to make the visit as useful as possible!
Our current hematologists are recommending Rituximab next. They've said cyclosporine is also an option. They really don't want to do a splenectomy. Neither do we, but we don't want to do any of these second line of defense drugs either! They are too scary to us with too many side effects.
I do have a Rituximab question. Before you or your child took this, did your doctor test for the JC virus? Or for Hep C? Did your doctor explain about PML to you? Our docs did not - we found out about it by looking on the Internet.
Sorry, I've got tons of questions in here, but I know that there's a lot of knowledge in this community! We feel pretty stuck with trying to figure out the way forward. Anyone got a magic wand handy?
Thanks in advance for all your help!
Katrina (mom to Kira)
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