4 months later...

My son... who just turned 5 this week was diagnosed with ITP in early October. We have been on a roller coaster ride since the day he was diagnosed. In and out of the hospital for multiple tests and IV treatments. H was on prednisone 3 different times the last time for about a month. He gained so much weight we had to go shopping for new clothes and his face was so "puffy" it caused him to be depressed because he hated people constantly letting him how fat he got. His counts were as low as 2 and the hightest was 162 wihle on the pred. He as been off the meds for about a month and thankfully he has slimed down alot. His most recent count was 87 and he is off all meds. He still bruises easily and has petechia. He goes for biweekly blood draws and has to be cautions when playing with his cousins. I was originally told that ITP normally clears up after a month, well its been 4 months and we are still fighting this up hill battle. I have decied to take him off pred because I didnt see the benefit and as a mother I couldnt watch my 4 year old son hate the person he saw in the mirror. I know that ITP isnt the worst thing that could happen but I still have not been able to accpet it. I like most had no idea what ITP was until my son was diagnosed, and I think thats what makes it so hard to understand. I read that some children normally are better with in six months... I guess I have to be hopeful that the same is true for my son. I want him to be able to run and play with his class mates in phy ed and on the playground. I want him to resume Karate class and just be the boy he was before ITP. I hope my wishes are granted someday soon but if they arent knowing that PDSA.org is here to be able to communicate with other parents makes the days and nights at the hospital a little easier to deal with... As always, thanks for taking the time to read my post! God Bless...

ITP is a real bummer, and thats a fact!

Try not to concentrate too much on the time that your son has had ITP for, because it doesn't mean that he will never get rid of it. The statistics I've heard are that about 80% return to normal in the first month, and then about another 10-15% in the first year. Of those who are left, about 10% spontaneously remit each year. As some people have said on another thread though, statistics really don't matter if your child is the 1 in 10 or 1 in 200 or whatever.

I think if your son is maintaining reasonable counts without treatment, you've absolutely gone down the right track, especially given the side effects of steroids. The reason that they don't treat most children in the UK is precisely because the side effects of treatment are sometimes worse than the original condition, and thats the decision you have come to. I think its worth remembering that "below average" does not mean "unsafe". Personally, I would let my son do just about anything with a count above 70K and his doctor would agree with that - unfortunately his last count was 12, and we both got a good telling off about some of the things he does! Be careful, but try not to let ITP change your son's life any more than it has to - maybe let him get bruised a bit, cos its just a bruise, not the end of the world.

As a parent, I have also found it very difficult to come to terms with my son's ITP. Most of the time we try to ignore it, sometimes not, and sometimes (recently) it seems to smack you in the face. But I think you just have to shake yourself down and get on with it because at the end of the day, there is no alternative. My son has had ITP for nearly three years now, and is finding it really difficult to see the light at the end of the tunnel, so as parents, we have to be there, believing that it does exist and sometimes, trying to locate it.

Good luck, you sound as if you are doing an excellent job for your son!

Alison

It sure sucks being one of the few that don't recover that quickly. So sorry your son feels so badly and sad. Most people will remind you chronic (6 months for most dr's) if it does happen doesn't mean forever!!! I DO believe them, and it does make me feel a little better...HOWEVER it makes me wanna know WHEN?? lol. It very likely to happen within the 6 months, after that you feel you have NO idea when or if. Your son's counts sure sound promising though and I wish him and you also the best luck.