worried mother

Hi my son evan was diagnosed almost a year ago with acute ITP I recently found this site and, even though he has had a good platelet count since december 2009, I wanted to share his story!!! He was admitted into the hostpital with only 2,000 platelets in his body and they treated him with an IVIG we were so lucky when he responded so well to that!!! His last count got was up in 200,000!!! but my worry now is can he have a relapse I got him his flu shot this year (it happened right after his flu shot last year) he seems to be okay but he been complaining of headaches and he has been moody lately guess what I am trying to ask if there is a chance it could happen again??? his hemo dr. says she thinks he is fine but I worry constantly about it even though it has been a year!!! Lately I feel like something is not right call it mothers intuition!!! Also has anyone else ever had this problem with it coming back after a year??? And he has had only one treatment with an IVIG!!!

Hi staci,

I am sure that he is just fine but as i have learned in the past...always trust that "mother's intuition".

Our story is very much like yours. Devyn was diagnosed with a count of 10,000, then treated with IVIG once and we had great counts for a little over a year. Last Nov we gave him the H1N1 flu shot and a few weeks later i started to notice some unexplained bruising. Everyone thought i was just being paranoid, but i knew something was up!! So i took him for a blood test and was not surprised to find that his counts were low again. Since then we have had low counts and high counts....we had to do another IVIG treatment back in April because his counts dropped to 8,000. I can honestly say that when his counts went back up after the 1st treatment i never felt like his battle with this was over....i never felt at peace, and unfortunantly i was right.

As i'm sure you have read on here most cases in young children is acute, so there is a big chance that he won't relapse. But definitly trust your gut instincts....if you don't feel right about it then ask to check the platelets. I'm sure he is just fine but this way you will know for sure

Deanna

Thanks so much for your info it is a scary thing to go through, his last platelet count was in March of 2010, I always worry myself sick!!! think I am going to get a platelet count this week yet just so I know for sure!!!

I think getting a CBC done to see his counts will give you a peace of mind I'm sure they are still high!!! Keep us posted. This is a great place for infomation or just to get some answers to the millions questions that we all have.

Deanna

So as of this morning I took evan for his cbc now I have to play the waiting game this is the worse part and his family dr. seems to think it is not his platelets but something else I guess that is good news but wondering what else is wrong but the way she talked nothing to serious so hoping for the best!!!!!!! I hope I was just being a little to protective!!!

Awww....the waiting game, I just took Devyn for his count today and i am too playing the waiting game praying for good numbers all around!!!

Deanna

Here's hoping for a safe result for both of your kids! Let us know.

I finally gave up on the waiting game and signed a release with the lab with a password and they now give me the count within and hour. Don't know if your lab would be as willing, but it's always worth a try:-)

Sorry haven't got back on sooner his count was good it was at 100,000 but what worries me is they have dropped he was staying up to 250,000 for like 8 months!!! I sound so crazy though cause that is an GREAT # compared to 2,000!!! He had to have his 2nd round of his flu shot Friday and I think that is what is getting to me but I have reassured my self how lucky I am I know alot of you still have such a fight and, I wish each and everyone of you the best!!!! It is so scary having a sick child and nothing you can do can make it better so for know Evan is doing great and enjoying his life what more could a mother ask for!!!! wishing the best to everyone and even though they say "Evan had an acute case" I will still be watchin for signs don't think that I will EVER STOP!!!! Thank so much for everyones thoughts and advice it is nice to know that we are not alone!!!!!!!!

Thanks Ali.....his counts were 116,000. Very happy with that and pray that they stay high!!

Deanna

Stacy,

That's great that they are still high, perhaps it was the flu shot that brought him down a bit.....have they said anything about doing counts more frequently though....at least every 3 months? I'm only asking because although 100,000 is a fantastic number for a child that has ITP it still is below normal. Every place is different....were in canada and they seem to still be pretty jumpy at any count under 150,000.

Good luck with everything.....and u don't sound crazy!!! You are just a great mom who cares!!!

Deanna

Stacey

As Deanna says, it might be the flu shot that has brought his count down. I think if it was me and my son I would leave it for a few weeks and then ask to repeat the count. THen if it was still the same or worse and given your son's history, I would be asking to see the haematologist. It seems like its worth keeping an eye on at that kind of count anyway to see where it is going.

In the UK, a count under 150 seems to make our district hospital very jumpy, but the haematologists are a lot more sensible. One of my other kids (without ITP) seems to have a count that varies between about 100-150 without any problem - he did get referred to a haematologist who basically told the district hospital to "get real" and stop panicking! She said that you've got to remember that the 150-400 range is just a normal distribution, and that there will ALWAYS be people who are perfectly healthy who fall outside the so called "norm".

Good luck anyway, and stop apologising about worrying - it seems very normal and nice parent behaviour to me!

Ali

P.s Deanna, thats a great count. I am so pleased for you, and will be hoping that he doesn't get any bugs at all this winter to send it back down!