watching...waiting...and trying not to freak out..

My 9yr old son was dx w/ ITP nine months ago. I have read this forum for most of those months and been so thankful that he has never needed treatment. His numbers started in the 60k range and spent a few months in the 50k and 40krange. Last month he was in the 30's. He was 21k on Saturday and 18K today. How do you not freak out?? We were told to head to the ER if he had any bleeding, bruising, or purpura, but he is outwardly free of symptoms. We go back for a blood draw on Wednesday and in for IVIG if the numbers continue down...so not the road we were wanting to travel. We have been praying that he would be one of those kids that would resolve in the 6 months.

LaMonica-mom to Camden (9yrs)dx 6/09

Good luck to you. I hope and pray his counts go back up. I was diagnosed recently, with a count of 35k....after prednisone in the hosp, they went up to 185,000.....but now are on their way back down...first to 127, now today to 108k.....it is scary to watch them fall...and u just hope they stabilize. I am new to this too....so yes, it makes ya freak out....but reading others experiences do help!!!!!! Keep us posted.

LaMonica, I think you have pointed out the obvious there - its the trying not to freak out that is the hard thing about being the parent of a kid with ITP! I haven't quite mastered it myself yet, but I keep working on it! LOL, my husband just said that if I am trying, then I am failing miserably!

My 11 year old was also diagnosed last summer. He had about 6 months of counts between 1-20, and then since November his count has varied between 16 and 124, probably mostly around 30 though. He had two short courses of prednisolone last summer, but has managed fine since then with no treatment. And I think that it the important thing to hang on to, if they are managing fine don't panic too much. In the UK they treat ITP differently in that they prefer not to treat at all unless there is significant bleeding - not just petechiae or bruises, but nosebleeds that won't stop, GI bleeding etc. My son has got down to a number that had to be rounded up to 1K without experiencing any of that, so it can be done. So keep an eye on the symptoms and don't panic too much about the number and watch him closely. I've also made sure that my son knows what symptoms he should worry about - bleeding when he goes to the toilet etc, or if he hits his head - and that he knows he MUST tell someone if he has those problems. I also make sure that he wears a medic alert wristband or neckchain - just in case.

The thing that has made my son most miserable about ITP is being restricted in playing and sports so try not to stop Camden doing things unnecessarily if possible.

Its impossible not to worry at all, but try not to too much. Some of these drops are temporary so he might bounce back up to a level that is safer. And I guess above all, follow your instinct. If you are worried about him on any level go see a doctor.


I wish you the best of luck ,

Ali

Incidentally, where does the name Camden come from - its the name of a district in north London, so for me its sounds a bit like David Beckham calling his son Brooklyn!

Thanks Ali! It was difficult to send Camden off to to school today, but he came back home at the end of the day without any problems. Of course, I have been unknowingly clenching my jaw and the roof of my mouth is raw :blink:
We'll see how tomorrow's count goes and see if we are headed for his first IVIG.
I would agree, that the loss of freedom of contact sports is the hardest part for him! As an avid basketball and baseball player, the doctors have left him with swimming, golf, and walking as options...thank goodness for the Wii-he loves sword fighting!

LaMonica-mom to Camden (9yrs) dx 6/09

p.s. Camden's name is kind of a family name...my husband is Cameron, and his grandfather is Camer. I think of baseball in the US "Camden Yards".

AMEN-Camden's counts were 43,000 this morning=NO IVIG Dr said his body is distracted fighting his strep throat and isn't attacking his platelets. Maybe they'll jump up to 252,000 like when he had swine flu-that was a good two weeks! LaMonica