What the .............?????????

Hello to all my ITP friends out there, havn't been on for a while because Joshua has been sick ALOT...mostly pneumonia...back on antibiotics as of yesterday, no pneumonia but maybe a bit of pluerasy (sp?). His numbers jumped a month ago to 150!!!! WOOOHOOOO....then two weeks later down to 111...still absolutely fantastic! Now I just got a call from hem and its...wait for it...wait....538!?!?!?!?! How in the hell is that even possible????? He's only on 5mg of pred a day now soon to be every other day. Now Im worried that they are TOO HIGH!?!?!?! I don't know whether to be elated, or worried! Is his immune system recovering from the ITP and over compensating???? Has anyone else had this happen????
Please tell me this is normal???

Thanks,
Angela

Angela:

First of all, hello! Glad you're back!

No, his counts are not too high. Not yet. High numbers are not preferred, but it's not scary high at this point (unless he has clotting risks).

With ITP, anything can and does happen. Sometimes counts go up when people are sick, so that could be what is going on. Hopefully, he settles into a normal range soon. In the meantime, breathe...breathe....

Hi Angela

Just wanted to say that Dougie's count goes up when he gets ill too.

Chill and enjoy those platelets. I adopt the theory now that things aren't worrying unless some doctor tells me that they are worrying; its working well to reduce my stress levels about stuff. You must have enough to worry about without stressing yourself out over excessive platelets.

Hope that Josh is better soon, and that his platelets stay good when he gets off that final bit of steroid. Fingers crossed!

Ali

Hi Ali and Sandi!

Missed being here, but life just gets in your way sometimes! Funny enough, Josh's numbers always seemed to go DOWN when he was sick or on antibiotics, and Hem told us to expect that. They'd like to take him off the pred all together, BUT we've now crossed that fine line between ITP and transplant. He had to have an echo last week that looked good, because they are worried about steroid wean induced rejection. He was always on 3mg of pred up until the ITP then on the honking great doses, now that we're back down to 5mg/day, they want to get him off it all together now. BUT...When he was much younger they tried to wean him by 1mg and right away he went into rejection...SOoooo now he has to have another echo in April, and then after being on the 5mg/every other day for a month, he has to have a biopsy. We thought we were done with those but if they take him off the pred then we have no choice... a nasty procedure, mostly afraid of the results not so much the actual biopsy...God this whole thing makes me sick enough that I can't enjoy the numbers. I hope to god his numbers come down, he already had a stroke while on life support as a baby, and it was a clot that went from an LA line into his own heart and shut it down (there'by requiring the transplant)....so a clot concerns me!!!! This kid does NOTHING by the book, he has every one baffled!!!! LOL