ITP/ Idiopathic Thrombocydopenia Purpura

edvedder913

My son was diagnosed with this and I was just wondering if anyone here has it, or has a child who has it, or for that matter knows anyone with it. It is a rare blood disorder only effecting 4 in every 100,000.

My doc spoke to me about it and I have researched it on line.... it doesn't seem to be majorly serious. It just really stinks because the pediatrician said he should never play contact sports such as hockey, football, etc. Being that I am a HUGE hockey fan, it's a bit upsetting. Good thing he loves tennis and baseball.

If anyone has any information to share I would be very grateful. Of course we all want our little ones to be perfect. However, I know there are far worse things out there, so I am trying to take this lightly.

Thanks

iluvcats

wow

I'm sorry to hear that :( I don't have any experience with it, but I found the website from the national institute of health (NIH)

http://www.nhlbi.nih.gov/health/dci/Diseases/Itp/ITP_WhatIs.html

(not being mean or anything but when I copied and pasted your subject there, google said it was misspelled)

they said it is Idiopathic Thrombocytopenic Purpura

I guess it's equivalent to people being on blood thinners. I knew a man who was on them for phlebitis and he had to stay home from work whenever it was icy, I guess so he would not fall or get cut?

ReleasH

Idiopathic Thrombocytopenic Purpura is an autoimmune disorder where the body produces antibodies to proteins and membrane components of platelets. Normally the body shouldn't produce antibodies that react with anything in your own body, only foreign proteins/material such as bacteria. The platelets get coated with these antibodies which tags them for removal by the spleen resulting in a low platelet count (thrombocytopenia). Since the platelets are a major part of the body's clotting system, kids that are affected by ITP have issues with forming blood clots. They may bleed spontaneously or excessively with minor trauma. Because the spleen filters out the platelets it can grow to a large size (splenomegaly). Treatment is generally steroids for acute flares of ITP, sometimes surgical removal of the spleen is necessary. The good news is that ITP is manageable. Yes your son will not be able to participate in contact sports and he will likely need to get regular platelet counts. It is not really equivalent to being on a blood thinner which inhibits the clotting factors.

Hope that helps a little. There is a lot of misinformation on the internet so I would rely on your doctor. Good luck to you and your son!

iluvcats

is it also called "hemophilia?"

ReleasH

No, hemophilia is a genetically inherited disorder where there is a lack of one of the clotting factors.

iluvcats

ReleasH wrote:

No, hemophilia is a genetically inherited disorder where there is a lack of one of the clotting factors.

but to a lay person (like me), they seem similar b/c you don't want to get cut!
both articles I read on ITP and hemophilia both said to avoid contact sports and aspirin.

for some reason, I think I read that vitamin c helps the blood to clot. I just take 500 mg sometimes, not daily.

DocChicago

iluvcats wrote:

but to a lay person (like me), they seem similar b/c you don't want to get cut!
both articles I read on ITP and hemophilia both said to avoid contact sports and aspirin.

for some reason, I think I read that vitamin c helps the blood to clot. I just take 500 mg sometimes, not daily.

platelets and clotting factors work together to make blood clots. A deficiency of either one can make you bleed more easily.

i don't recall that vitamin C has a major effect on clotting. Vitamin K does.

catefrances

idiopathic is doctor speak for we havent got a bloody clue why this occurs basically. my son has idiopathic aneurysmal bone cysts and thats what his oncologist said. is that what your doc said EV913? this is the second time these cysts have occurred. were hoping they manage to remove all of them this time. and there no guarantee they wont return. my son is pissed he cant play contact sport as well. in fact the poor little guy cant even run. last time he had one it was so big when he fell over he fractured his leg, cause there was no bone there. which in a way is a good thing cause thats how we found out he had the cysts in the first place.
anyhoo im hope your son will be ok.

ReleasH

you are right catefrances ... idiopathic does mean unknown mechanism but in the case of ITP, the docs are fairly certain it is an autoimmune cause.

Regardless, I'm sorry that both your little boys aren't able to do the things they would want to.

edvedder913

thanks to those of you who responded. i am fortunate in the case that my son's pediatrician has the same disorder. what are the chances?

there is not a known cause at this time. no one knows if it is genetic. however, i do bruise incredible easily and think there is chance i may have the same thing. i plan to talk to my doc about it on monday.

it is not the same as hemophelia.

KosmicJelli

edvedder913 wrote:

thanks to those of you who responded. i am fortunate in the case that my son's pediatrician has the same disorder. what are the chances?

there is not a known cause at this time. no one knows if it is genetic. however, i do bruise incredible easily and think there is chance i may have the same thing. i plan to talk to my doc about it on monday.

it is not the same as hemophelia.

WOW! What are the chances of you physician's child to have the same thing! So in your case what a great thing! I read that 70% of cases do go into remission... Since Im not a doctor but more relient on natural methods of medicine... I advocate trying to build your child's autoimmune system naturally through healthy diet. Im telling yah it works.. I have fought both arthritis and diabetes through proper diet!