Hi. My 8 yr old son was diagnosed with acute ITP 18 months ago, which is now considered chronic. He is considered a partial responder to Prednisone and IVIG. IVIG will raise his counts > 100 for 4-6 weeks, prednisone only works while he's on it. He was getting IVIGs every 4-6 weeks for the fist 8 months, then his counts stablized (around 50k) for 9 months or so. Then in May, his counts bottomed out again. He did an IVIG 3 weeks ago, and he is already bruising again, so i suspect his count is low again.
This is very frustrating. We had hoped it would go away after 6 months or so, but it looks like he may have to deal with it long-term.
I have a fundamental question. His issue seems to be with the destruction of his platelets, not the production. Does any one know why hematologists treat this instead of a Immunologists? It seems like an auto-immune disease like ITP would be treated by am immunologist.
I'm glad I finally found this site, as I don't know anyone else who is suffering from ITP.
Hi, I see both a haematologist and an immunologist. The haematologist knows little about the immune deficiency I have and the immunologist knows little about ITP. It's just not their area of specialty. I imagine it's historical in that ITP was not known until fairly recently to be an autoimmune condition. Having said that, ITP also often isn't the specialty of haematologist oncologists and if you can find one that specialises in non-malignant blood disorders or haemostasis so much the better.
By the way it is now known that most, if not all, ITP patients have a problem with both destruction and production although it is impossible with normal tests to see. It is also becoming normal not to treat children at whatever count unless they seriously bleed. What happens if your son doesn't treat?
At the conference, the panel of doctors recommended seeing a hematologist that is a specialist in ITP. Unfortunately there is not that many of them. For example, there are only 3 in Ohio.
I had a very similar experience as many of the patients at the conference where there hematologist's focused mainly on oncology and didn't know much about ITP. In April I was very frustrated with my doctor because I had a wealth of info from pdsa and knew that I had other treatment options. I drive 4 hours to se a specialist and it has changed my life with this disease.
I highly recommend at least getting a consultation for your son with a specialist,If the doctor is great, he will continue to consult with a local hematologist. It makes a world of difference.
It is also becoming normal not to treat children at whatever count unless they seriously bleed. What happens if your son doesn't treat?
Hi Ann, (or anyone else) my 10 year old is treated with pred to keep her levels in double digits. She certainly doesn't bleed excessively, but is extremely active, and therefore perhaps it is more precautionary.(?)
We currently see an immunologist (due to a PID) and are due to see a Hemo in 5 weeks. I would love to read the info on not treating children, if you could provide me the link.
He doesn't seem to bleed much, some major bruising, and blisters in his mouth, but he is very active, so we have treated him because of this.
His count was down to 4k last time it dropped. He was hanging out with a friend and they ran into each other. The other boy's forehead hit just below my son's eye. Later that night, my son's eye swelled shut from all of the bleeding. he did a round of prednisone, but a week later his count was back down to 2k. We did an IVIG mainly because we were afraid he will fall and hit his head or something.
we're trying to avoid treating him as much as we once were though.
I was once told that the mouth is a window to the inside. If the mouth is showing a lot of symptoms it might be more likely for internal bleeding. This is what a hematologist told me with my son, I can't say for sure how true or unlikely it is, but if he is having a lot of blisters/ bleeding in the mouth maybe that is why they are treating??
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