Has anyone on here ever had just a ONE TIME episode of ITP? Since ours was idiopathic, we were told it could go either way.

[Tedsmom]

[NickyD]

Hi

I am not sure what you mean by one time episode of ITP?

I was first diagnosed with ITP in December 2007. I had six months of treatment and went into remmission for two and a half years. For no apparent reason my platelets crashed to zero 18 months ago and since then I have had a significant amount of intensive treatment.

Does that mean I have now had two episodes of it?

Nicky

[Tedsmom in reply to NickyD]

Hi Nicky...from what we were told by my son's Dr, yes, that would make two episodes or most likely chronic. We were told that his episode of ITP could be a one time thing and we'd never know why it happened, but it would not reoccur. That's why I was wondering if anyone on here had had just one episode. My son was an athlete in great condition and this came out of nowhere. He'd cut his hand and been on three different antibiotics in the months before it happened and we wonder if that could have started off the whole thing. Thanks for your reply, I hope you're feeling better.

[Tedsmom in reply to NickyD]

Nicky, just out of curiosity, do you recall if you'd been on antibiotics in the months preceding your crash to zero a year and a half ago? And may I ask,-what does a 'significant amount of intensive treatment' entail?

[mags4743]

12 years ago I was diagnosed with Type 1 diabetes. At the same time my GP did a full blood count and my platelets were down to 50. One week later platelets back up again to over 220! All had been ok until last year when I had significant drop (currently) 10. So although this doesn't answer your question fully it does mean, in my case, that I was clear for about 9 years.

As far as ideopathic is concerned, this just means "unknown cause".

Mags

[Tedsmom]

At least that was a long time between episodes, so that's good. I was hoping to hear that a significant amount of people had just had one episode and never had a problem with it again. We were told that could happen. Also that if it happened a second time it would be considered 'chronic' and he'd have it forever. I'm of course hoping it was a one time thing related to heavy antibiotic use in the months before the ITP episode. So were you without any symptoms when you dropped down to 10? Thanks for your answer.

[mags4743 in reply to Tedsmom]

No symptoms of bleeding or bruising just tired and a little lethargic.

Funny you should mention antibiotics as I used to have a lot of antibiotics prescribed as I suffered with tonsili problems and occasional chest infections. Coincidence?? Agree with Morgan I think children tend to "grow out of it" which is good.

Mags

[Morgan]

Hello Tedsmom

I have have no treatment at all for ITP - I was just diagnosed with it after several routine blood tests for an unrelated op so have not had any "episodes"

but was told it was for life. My understanding is that it was only children that may be cured (acute ITP). How old is your son?

[Tedsmom in reply to Morgan]

Hello Morgan and thanks for the answer. My son is all grown up, he's 23, unfortunate because if he was still underage I could make him get follow up. He was very good about gettting his weekly blood draw while he was on Prednisone and while he was being tapered off, but now he pronounces himself "fine, just tired" and refuses to have his levels checked. What did you mean by you have had no treatment at all for ITP, they didn't treat your low platelets, or they just haven't had to do it since? My son was hospitalized with this last summer and we were told at that time that it may happen only once and never again.

[Morgan in reply to Tedsmom]

No I have only ever had to have treatment several years ago when I needed to boost my count for a minor operation (prednisone was given which dropped my count to zero so I wont take that again - I then had Intravenous Infusion of Immunoglobulins which briefly worked) otherwise I need no treatment at all as my count is mainly around 30-35 and has been for several years. I only see my specialist once a year to check the count. I would say the only symptom I have ever had is unexplained fatigue but unlike your son I am no lover of sports so adapting my lifestyle was quite easy. It will be very hard persuading your son to change his lifestyle - good luck and do keep on at him to get his GP to check him occasionally.

[Tedsmom in reply to Morgan]

Will do, thanks for the info. : )