Almost two years ago my son was diagnosed with a platelet disorder called Idiopathic Thrombocytopenic Purpura, or ITP.
It is a blood disorder that when his platelets get low he bruises terribly, and we have to worry about brain hemorrage.
Every six months or so we go to the hospital in Iowa City where they give my three year old son a four to six hour IV with synthetic platelet to help boost him.
What I am asking of you, is to help me find a site that will explain some things in laymans terms, and has a parent support group.
I found one, the platelet people, but they only send out a monthly newsletter that you have to pay for. Right now money is tight so that is not an option for us.
I need help in finding a parent friendly site, and I am not to great with search engines. Hell, I can even post pictures here because I haven’t figured that out yet.
Please, any help, or advice would be greatly appreciated.
Mistress Kricket
http://emedicine.com/EMERG/topic282.htm
This site has a few links on it:
http://www.ibionet.com/rarediseases/links/purpuraidiopathicthrombocytopenic.html
Maybe a bit technical, but looks informative:
http://www.imonline.org/journals/annals/15feb97/itpedit.htm
Hopefully something here helps.
Just found another pretty good site:
http://www.parentsplace.com/health/illnesses/qa/0,3435,982,00.html
and one more:
http://www.mosby.com/Mosby/Wong/hcom_wong_w7.html
I have nothing to contribute right now. But I thought this post certainly deserved to be bumped up higher so others might see it and be able to help you.
Best of luck.
Visit a medical college library, you absolutely cannot find more information than that anywhere.
don’t take medical advice from the net. But the medical info on the net is okay.
this one looks pretty easy http://www.familydoctor.org/handouts/113.html
I cant find a contact group except at http://www.itppeople.com/ which I suspect it the first group you found too.
Best of luck, my thoughts are with you
**Id rather be no one than someone with no one **
Wish I had more time today to help you find more links.
Here are a couple more, anyway:
http://www.drkoop.com/conditions/encyclopedia/articles/020000a/020000074.html
http://www.themedguide.com/docs/blood/immune_facts.html
http://seconde.scripps.edu/itp/itprefs.html
Thank you guys!!
You are really all the support group that I need, but my life has been such a soap opera lately and I didn’t want to burden you all.
Great advice on not taking medical advice from the net. I hadn’t planned on doing that, just collecting more data and trying to find more parents in the same situation.
My very first thread here was about how wonderful I though everybody here was. I lurked for about a year, and then my first time out I praised you all.
I came on shortly after the call for action against a moderator. (You know the one.)
I wrote about how even though we all have are differances, and may not always see eye to eye, that we are there for each other when it comes down to it.
In the year that I sat in the side lines watching, I laughed, I cried, and I yelled at my screen waking the household!
Okay, now that I am done inflating a few egos I will once again thank you. I will check them all out with my husband tomorrow.
My son Dylan was just in the hospital again this morning for another IV. The first one wasn’t very effective, and that is unuaual. Not a great sign, but I am putting a lot of positive energy out there so it will get better.
Mistress Kricket
Just gonna bump that positive energy up to the top. I’ll put some out there as well. Good luck.
http://www.itppeople.com/ http://www.familydoctor.org/handouts/113.html
The first link is a support page. The second is a fairly comprehensible description of the disorder.
Best of luck and good wishes from me, too.