10 year old diagnosed Aug 2012

I am so glad I have found this discussion board. I have so many questions and I have felt I have recieved more information here than from the Hematologist. I have been reading for awhile so I decided to post a few questions I have. My daughter was diagnosed on Aug and so far no treatment has been needed. Her counts are from 51,000-140,000. We go every month to the Hematologist he examines her and says she looks fine except for medium size bruises and they do lab work. How long can we expect to go every month? He states it just depends on her counts. She gets to 140,000 then the next month she ia at 65,000 and so forth. She has not had a BMA/BMB. When are these usually done. All her lab work is normal except her platelets. Thank you in advance for any advice you have.

Hi

Once you get used to what symptoms equal what counts you won't need to go so often. As an indication, my son goes for a count about once every three months. Even thats a bit pointless because it isn't informing any treatment decisions (we don't treat much in the UK) and we are generally pretty good at guessing it anyway. I've got another son whose count is mostly low normal (100-140) with the occasional dip into the 80s - he hasn't seen a doctor since a couple of years ago.

I hope your daughter recovers soon. Her counts aren't bad at the moment, and the ups and downs might be a good sign - hope so!

Ali

Hello,
My son is now 7 and he was dx in March just before his birthday. His CBC is also normal except for his platelets. He's hit lows of 20-ish twice but basically fluctuates between 30's and 50's. We haven't had any treatment because his counts are high enough to avoid intervention. We've seen 2 hematologists. One suggested BMB, the other did not. We'd already said we wouldn't do it anyway as it is not warranted. We're lucky I think because his pediatrician is awesome. He's, to my knowledge, the only ITP in her caseload at the moment but she's done more for us as far as putting us at ease than even the specialists. He's had a blood smear and anti-platelet antibody tests. Everything points to ITP...no need to put him through a BMB unnecessarily. We are on a monthly schedule mainly because I like to have an idea of where his counts are. If he's in the 20-30 range, we exercise more caution than the 50-60 range. ITP has changed his life for the time being. This could be a temporary ride or it may be more long term. Either way, we're just gonna go with it and see where it takes us day by day, month by month. It's very hard not to but try not to dwell on it or let it control your days. This is an awesome site and so is the facebook page. It's nice to connect to other people who understand! Praying for healing for your daughter soon!

Thank you so much for your reply. We went to the hematologist on Tuesday and her platelets are 56,000. He recommended we get a medalert bracelet. Does your son wear one? If so what information is engraved on the bracelet? I am also taking this one day at a time, but I worry so much about her. I asked about the BMB/BMA but he does not feel it is needed which is fine with me. I will also keep your son in my prayers.

Sounds like her counts are just like ours! He does have an alert necklace...dog tags. It has his name, "bleeding risk" "low platelets" and my cell # and his doctor's #. I can't get him to wear it all the time but if we are away from home/out of town I like him to have it. Also, on my phone, under emergency contacts, I have a note that says "7 yr old son has bleeding disorder. If he needs assistance, please call (pedi. #)" We've been in this for 9 months and I still worry. It's hard not to. When did hematologist say to recheck?

She goes back to the Doctor in one month.

The Hematologist mentioned that her spleen was enlarged at her last visit. Is this a normal progression for ITP?