Question

My daughter Mia has had ITP since she was 12 months old, now she's almost 18 months. At her 12 month check up her count was at a 10. She's now sees a children's hematologist regularly. In the last 6 months her counts have been anywhere between 10-16. The lowest she ever got was a 7 and it lasted for a couple days. We have not treated her ITP yet still watch and wait method. Our hematologist said it does take some time for ITP to heal and 'cure'. She said about 40% of children recover in 6 months, while 60% in about 9 months, and 80% in one year. And even with that other 20% which still have ITP after a year, they still have a chance to recover as well. She said in what she's seen the other 20% of kids that have it after one year most recover within a year after (so 2 years). And the remainder 5% has chronic. And this is what she's seen in Minnesota. So I am just wondering if anyone has a child that has recovered how were the platelets going up? Mia's count was at a 20 today which to me is great. Is it like one day you're at a 10 and the next day you're at a 150 or does it gradually go up one month you'll be at a 20 the next at a 30-40? Hopefully I can get some answers.

It sounds like your hematologist is giving you correct facts. My daughter was diagnosed at 3.5 years old and now has had it for 20 months. We were given the same facts. We did treat because our doctor recommended it but over time I have learned that it is fine not to and I am comfortable with that. The thing with ITP is there is no answer and it is a waiting game for their body to self correct. We are in a trial study for a new drug released by GSK and it seems to work. I still have faith her body will one day fix all this. Hang in there, this is a great board that helps you feel like you are not alone and also most of us have tried about every treatment.

Jen

I've heard slightly different percentages from my son's haematologist (70-80% in the first six months, 25% of the remainder in the next six months, and then 10% of the remainder each year after that). However, the general trend is pretty much the same.

My son has had ITP for around 2 1/2 years now. He's had some pretty good increases after having viruses that seem to make his count bounce around a lot - sort of from 15 to 120 within a few days. Unfortunately, the bounces then seem to get smaller over time and eventually he returns to his normal of 0-20. My theory is that viruses distract his immune system somehow, but it doesn't work this way for everyone.

Looking at posts on this board, counts seem to climb in both ways - gradually and quickly. There are kids who dip and then return to normal after a few days or weeks, others whose counts climb very slowly. It seems to depends on the child.

Anything is possible......I still believe my son will just miraculously get better one day!

Ali

Like others have said, every child is different so it's difficult/impossible to talk about a "typical" path with ITP. My son, Brady, is coming up on 10 years since diagnosis - please don't let that depress you because I think he's one of the longest-running kids on this website. Anyway - we did treat at the beginning and had many up and down counts. I lose track of time, but I'd say that in the last 4-5 years he has only had one treatment a year on average and that's usally to do something active, like skiing or wakeboarding. Brady hasn't had a treatment in 18 months and his last count (Sept. '11) he was at 60k. Well after his last treatment and the accompanying platelet spike, his count was down to about 30k or so. Since then, his levels have increased VERY slowly and haven't fallen back down. Many kids bounce around even without treatment, but Brady has never done that. To me, it seems more encouraging when the counts increase on their own, without treatment.

Hang in there - I know it's really frustrating and scary in the beginning. Hopefully Mia will recover soon and this will be a distant memory. If it takes a little longer, know that many kids live full, active lives while they're dealing with this. And, like Ali, I still believe that my son will get better one day!

I have wondered the same thing myself, about what platelet count trends we should be seeing in someone who is recovering. Like most of the others have mentioned it's different for everyone. My daughter is also Mia and she is 6, she has had ITP for 3 months. She started with a count of 0/1 and after not responding to two treatments of IVIG she responded to steroids with a count of 143. Her counts bottomed out when they pulled steroids completely so we have gone in for weekly cbcs with a stepping down of dosing, first 1/2 tsp every day one week, to every other day for a couple weeks, to every third day for a couple weeks and now nothing. Her counts went down each time we stepped down the dose, but then would rise again so her team felt comfortable making the next change, her last count was 141 a week off of steroids completely. We even got a week off from the lab last week, but the lab visit after school today should give us a better idea of what is going on for our daughter, I'm keeping my fingers crossed.