A Bit Discouraged!!!

I find myself a bit discouraged today after Devyns Dr appt. Altought his counts were a good number 66,000, this was the first time that his specialist labbled him as cronic ITP. Don't get me wrong i knew that after coming out of remmission for over a year that he probably was but hearing it from his Dr just made it set in!!

I'm upset because she made it sound like He would never get better and that his symptoms would only get worse as he got older. Talk about giving you no hope!! We have been very lucky so far because Devyn's symptoms have never been as bad as some of the kids on here and so far we have had to treat only once. Don't get me wrong she is a very good Dr and i have agreed with the way she has wanted to deal with Devyns ITP. I'm just hoping that she is wrong and that one day he will be ITP free again!!

Thanks for listening everyone......just needed to vent a bit

Deanna

Hi Deanna

I know where you are coming from because Dougie is coming up to that year mark too.

In the UK, they seem to classify ITP in 3 or possibly even 4 categories - acute (under 6 months), persistent (6-12 months), chronic (1 year plus) and recurrent (keeps coming and going). The way the haemotologist explained it to us was that in the persistent phase, you had a 25% chance of remitting. After that, I think he said that about 10% of all chronic cases will spontanteously remit each year. Thats not a great chance but an OK one I reckon.

There are a lot of cases of mums on this site whose kids have got gradually better over the years, up and down, but eventually safely up, maybe not "normal" but fine nonetheless. I've found it really helpful hearing from some of you by the way!!! So I working on the theory that as long as platelets get to a "safe" level (the consultant suggests a consistent 60K), it doesn't matter whether Dougs has ITP or not. He's not there yet clearly, but he is some of the time.

66K isn't as good as Devyns last count, but still really OK Deanna. Try not to get hung up on the label too much.

All the best and hugs to Devyn

Ali

Thanks Ali,

It really helps to hear words of encouragement!!! Your post has made me feel a whole lot better!!

Hey, Deanna -
Posts over the years have definitely proven that Devyn's doctor is incorrect in saying that symptoms will get worse, etc. As we all know, ITP is totally unpredictable and each child/adult reacts differently. Our son, Brady, was diagnosed in 2002 when he was 5 years old (he's 13 now). He has been treated with prednisone, Rituxan, WinRho and IVIG. We used WinRho and IVIG (not together) maybe 3 or 4 times a year, between 2004 and 2008. Brady is a very active kid, so we generally treated him once he dropped below 15k or so, so that he can stay active and participate in sports. Below 15k Brady starts getting bad nosebleeds and his count will drop all the way down very quickly. Anyway - that's background history.

What I want you to know is that in December '08 we treated Brady with WinRho. He held on for months - very slowly dropping down to about 30k in Summer '09. In December, '09 I took him for a blood test because I knew we would be going skiing several times over the Christmas holidays ,and his count was 90k. That was the first time in 7 years of dealing with this that Brady's count increased without a treatment! Nobody wants Devyn to deal with ITP for seven years (!) but I want you to know that there is always hope and a chance for the child's body to spring back. We actually haven't been in for a blood test since December because I'm enjoying this happy place (Denial?!) but Brady looks good, isn't bruising a lot, no nosebleeds, etc., so we're hoping he's holding strong.

Hang in there. I have read many stories over the years of kids gradually improving to "normal" or near-normal counts.

Beth - mom to Brady (age 13, diagnosed 1/18/02), last WinRho treatment was Dec.'08

Hi all,

It was great to read your posts here as I read it Thursday night when we got home from our visit with the hematologist. I have been wanting to write sooner but my computer is down and I get on my kids laptop when I can.
I too, was very bummed as now Jordan is considered in their view, chronic. She was diagnosed April 27, 2009, and they are calling it a year now and told me most likely she will not get better on her own. Past six months I was really crazy about the word chronic but her doctor said lets give it a year. Jordan is now under the care of their department head as he has more experience with Rituxan which their group is now suggesting. Jordan has had a few counts that have gone up on their own without treatment (not hugely up but up from the previous count) so I want to wait till summer if we do Rituxan. (maybe wishful thinking?) Her doctor is 4 hours away and it would be easier to make the 4 trips in June when her school is out too. But all your posts and reading Beth's about Brady made me feel better, so glad we have this board!

Karen
mom to Jordan