Frustrating news about my 14 year old son

Well...our son crashed only a week after the Win Rho....back down to 8,000. He had IVIG two days ago and we will check numbers again tomorrow morning. We are happy with our doctors thus far, and think we are at a really good medical facility, but are wondering if any of you know if there are any websites or information listing the top rated hospitals or hematologists treating ITP in the US. We wouldn't mind seeing what our options are....

Thanks to all of you - I can't imagine that some of you have been dealing with this for years! My prayers are with you!

Page

Page:

All of the treatments are here, no matter where you go:

www.pdsa.org/treatments/conventional.html

I went to a specialist once - took all day, and her recommendation was Prednisone. If you are unhappy with his care though, you do have that option. Sorry, but I'm not the specialist guru. Maybe someone else can help you there.

Here's two things an ITP specialist told me that I don't think I would have gotten from non-specialists - 1) Do not try the new version of Rituxan (forget what it's called) - because you had an allergic reaction to Rituxan so it could be dangerous to you and 2) if Rituxan worked for you then Imuran will probably work for you too.

So I'm a fan of seeing a specialist. There is new research and new drugs and subtle inferences and patterns that an ITP specialist can help with. I still wish someone would put together something like 'if your ITP is secondary to lupus than these treatments are more likely to work for you' but I haven't found that yet.
Erica

I saw an ITP specialist and was enrolled in the pediatric trial for Nplate two weeks later. It helped to have an ITP specialist who strongly believed in "treat the symptoms, not the count" listen to my daughter's frustrations about being withheld from many activities just because she wasn't showing many symptoms at the time. He told us that sometimes it just gets to be a "quality of life" issue and if treatments make their life better and they understand what the side effects are, then he was all for it. Then he asked us if we were interested in enrolling in a trial and told us what was going on with the adult population with this drug and said it really looked like a promising drug for children.

Due to that ONE visit, it changed Caitlin's life and she has become better and better each day at doing what she loves...competitive cheerleading. Sometimes the hematologist you are currently seeing is really up to date on the treatments, but if you find out that you know much more than the hematologist due to your own research (he/she doesn't know about the current treatments), then maybe a second opinion or an ITP specialist is worth it. I would give it some time though...he does still have some time to be an acute case. (Not sure how long he has had it, but if it's been less than 6 months...wait until then or at least closer to the year mark.)

Once again, thanks so much for the good advice. My son has only been struggling with ITP for a month as of today. I am certainly waiting a while before looking elsewhere and I do feel strongly that his doctors are good and up to date on treatments. I was just curious if there is a doctor or hospital out there that is well known for treating ITP - cutting edge, etc. In the meantime, his platelet counts are up to 92,000 for now. But the IVIG is still making him feel really puny. Two weeks ago we tried WinRho and his counts went way up and then dropped off to 8,000 after a week. So, we are optimistically hopeful that the IVIG will continue to work....

Thank you, again, for your advice and support.

Page

Hi Page

Thats good news about his count with IVIG. The thing about most ITP treatments is that you need to remember that they aren't cures - just temporary measures. Just an idea, but if he is asymptomatic and the treatments are making him feel a bit manky, you might want to talk to the doctor about "wait and watch" as an approach. Kids in the UK very rarely get treatment for ITP, even at counts of less than 5K, partly because doctors reckon that the treatments are worse than the illness. Yes, it is a bit nerve wracking on occasion, and your son might have to have a few restrictions in his activities, but it is a possibility that you may want to explore.

Good luck with it all anyway, and I hope that he is feeling better soon

Ali

Do make sure you have your son checked for anaplasmosis, a tick borne parasite that can wreck havoc on platelet counts. Our daughter's initial ITP episode was triggered by anaplasmosis. She did not stabilize and go into remission until the anaplasmosis was treated, about 4 weeks after her initial episode. She still has ITP when a trigger presents itself (mainly head colds). She was almost 12 when this happened, she's almost 18 now.

There are other triggers for other people, usually people never know what the trigger was. But if it is something obvious like anaplasmosis or h. pyroli (SP?) then curing the trigger can stabilize the ITP.

We did find the pediatric hematologists were clueless about anaplasmosis even though they worked in the same hospital as some world class experts on tick-borne diseases. They delayed proper diagnosis by weeks.

Good luck on a good resolution.

Sandy