5 yr old son with ITP

That's fantastic! Great news! When is the next count?

Everything you said makes complete sense. The treatment usually does wear off within 1 to 4 weeks. If his counts stay up, that could indicate an acute case.

If he would need IVIG again, please remind that doctor that he needs a slower drip, more hydration, and possibly a steroid to prevent aseptic meningitis. We don't want that again.

Sandi wrote: That's fantastic! Great news! When is the next count?

Everything you said makes complete sense. The treatment usually does wear off within 1 to 4 weeks. If his counts stay up, that could indicate an acute case.

If he would need IVIG again, please remind that doctor that he needs a slower drip, more hydration, and possibly a steroid to prevent aseptic meningitis. We don't want that again.

His next count is friday. Yup will remind her

Howdy Frank,
I was diagnosed with ITP when I was 5, which was 17 years ago so your son is not alone. Most cases are just one episode (about 80-85%%) so I pray your son just has this one episode and is done with it. Just a little bit about my story my hematologist isn't 100% sure how I got ITP but it was either a virus or my MMR because it was in that timeframe. I've done prednisone, IVIG, and I did Rituxan in September of 2014 and have been in remission ever since. The PDSA has useful links on treatment options if you have to look into other options. You should have the doctors test your son for h-pylori. Its a stomach bacteria that's been connected to ITP, a family friend had ITP caused by h-pylori and if you get rid of the h-pylori you get rid of the ITP. Sorry if I rambled, there is so much information out there. I went through the same thing your son is going through right now so he is not alone. My parents went through what you are going through so you are not alone and I pray this is an acute one episode ITP and not chronic which is what I had. I wish you the best of luck

savvyj19 wrote: Howdy Frank,
I was diagnosed with ITP when I was 5, which was 17 years ago so your son is not alone. Most cases are just one episode (about 80-85%%) so I pray your son just has this one episode and is done with it. Just a little bit about my story my hematologist isn't 100% sure how I got ITP but it was either a virus or my MMR because it was in that timeframe. I've done prednisone, IVIG, and I did Rituxan in September of 2014 and have been in remission ever since. The PDSA has useful links on treatment options if you have to look into other options. You should have the doctors test your son for h-pylori. Its a stomach bacteria that's been connected to ITP, a family friend had ITP caused by h-pylori and if you get rid of the h-pylori you get rid of the ITP. Sorry if I rambled, there is so much information out there. I went through the same thing your son is going through right now so he is not alone. My parents went through what you are going through so you are not alone and I pray this is an acute one episode ITP and not chronic which is what I had. I wish you the best of luck

Thx for the kind words savvy...no need to apologize the more info the better. I will definitly ask the sr about the h pylori at tomorrow blood test

464 today !!!!!

That's great! They will probably drop in the next few weeks and hopefully settle in the 200k - 300k range. This could be acute, Frank! Fingers crossed!

I'd give it a few months before you get too excited, but it's looking good.

Great news!

Hopefully this is acute case!

Sorry for not posting had to get a new phone. Im really hoping this is acute guys, must sound like an idiot because im sure thats what everyone hopes for.

I know im gonna start to worry like crazy if the levels taper off with the next few tests. I cant help it.

Hes been doing great though. Playing outside and enjoying himself. Dr has no restrictions on him. We noticed a couple of normal looking bruises on his legs, cant help the bad thoughts from creeping into my mind but what can i do.....he also lost his teo from teeth back to back. Was worried about the bleeding but it was fine normal flow.

No, you are not an idiot for hoping your son's ITP is acute. I'd think you were an idiot if you didn't!

More than likely, his counts will drop some. His count right now is a bit high and they might level off. Try not to worry, that would be normal as the drug wears off. He probably didn't have counts that high before all of this started, so he'll probably settle into his normal unless ITP isn't done with him yet. But - it looks really good right now since he's sustained a high count. You have a lot of reason to hope!

Sandi wrote: No, you are not an idiot for hoping your son's ITP is acute. I'd think you were an idiot if you didn't!

More than likely, his counts will drop some. His count right now is a bit high and they might level off. Try not to worry, that would be normal as the drug wears off. He probably didn't have counts that high before all of this started, so he'll probably settle into his normal unless ITP isn't done with him yet. But - it looks really good right now since he's sustained a high count. You have a lot of reason to hope!

Thanks sandi. This weeks count was 440. Dr said almost word for word what you said

That's great news - fingers crossed for the next count.

Thats great. Fingers crossed his counts stay good!

Sorry guys been dealing with some health issues of my own. But great news last week hos numbers were 330 this week they wer 360. So we are at the 5 week mark.

Frank, that is wonderful! It seems to be acute with every passing week!

I hope you're okay too!

Sandi wrote: Frank, that is wonderful! It seems to be acute with every passing week!

I hope you're okay too!

Thx sandi im ok. Seems like anything that happens to me is peanuts compared to what i feel like my little guy is going through.

So i cant remember where this was mentioned but im pretty sure someone mentioned having him tested for h pylori.

Is there a connection between itp or the iga deficiency and h pylori ?

The connection between ITP and H Pylori is a long shot. I can remember two people here who tested positive, were treated, and counts went up. Most test negative and the rest that tested positive didn't respond to the antibiotics as far as ITP. However, it is always worth getting tested and checking it out.

As for the IgA, some people have both ITP and Primary Immunodeficiency. Not quite sure what the connection is other than some people have both diagnoses.

Ok reason why i was asking is because he just had a abdominal sonogram. And the gastro meantioned testing for h pylori


Also has to see a urologist because of something that came up. The gastro dr doesnt think its anything to be worried about but the report mention urachal diverticulum.

So H-Pylori is a stomach bacteria that causes stomach ulcers that somehow is connected to and can cause ITP. A family friend had H-pylori and was diagnosed with ITP, so there's a chance if you treat the H-pylori that the ITP will disappear as well. This wasn't my case. But you never know unless you test for h-pylori.

Hos levels have remained high guys ! Yesterday it was 442.

We still havent gotten a chance to test for the hpylori but am making it a priority this week

That's great! Sounds good!