5 year old daughter newly diagnosed (Sept 2011)

I'm posting the beginning of our journey here because while my daughter was in the hospital I found this forum and it was a great help to me. I want to share my experience in case it might help someone else. Following a routine spill on the sidewalk my daughter presented with large hematomas and bruising and then petechiae and other bleeding not related to the fall. In the ER we found out she had a platelet count of 1000. Her other counts were normal. This is when we first learned that ITP even existed. She was admitted to the hospital and had her first dose of ivig the next day, but her count remained very low at 2000. A second dose the next day did little to raise her counts, the next count was 3000. She also had a severe headache for half a day, but thankfully she slept most of the time. Next she was put on prednisolone, but before they did that she had a bone marrow aspiration to eliminate any leukemic activity. Everything was normal and she doesn't even remember getting it done. After two days of rising counts on the pred and no further bleeding she was discharged. Her first weekly cbc following hospital was almost normal. She discontinued the steroids. She returned to school after missing 6 days. Her next cbc showed that her platelets had fallen to 30,000. Our hemo team does not treat unless there is active bleeding. So that's where we are, the watching, waiting, and testing phase. Our next test is Monday unless something occurs before then. I'm like a lot of parents on this board, reading whatever I can find, trying to make sense of what is going on, trying not to cry in front of my daughter, wondering when we can get off the itp rollercoaster.

Hi Megan, just wanted to say hello and good luck for your little girl. I am sure one of the parents on the board will chime in, it is usually quiet on the weekends.

It has to be very hard when your child is the one with ITP, but I am sure she will be fine.

Very often, ITP is acute for children, which means it can go away as quickly as it came. Hopefully, that will be the case for your daughter. In the meantime, please know that ITP is very treatable.

Good luck; keep us posted!

Good luck! You are not alone and trust me tears will come and go. Try not to worry every second it does no one good. Treatments are there to help but rarely fix the problem. Only time will tell. Be confident she will outgrow it. 85% do in the first 6 months and 50% of what is left grow out in the next 6. So be hopeful. For those of us with Chronic children, I firmly believe you learn to deal with it. It is manable. That doesn't mean it is not frustrating.

I once told my hematologist that I look around and realize it could be worse and he told me that I was wrong..."it could be better". He was right, it is okay to feel sorry for your child. It is nothing I would every wish for anyone. There is not set plan that works and as a parent you are stuck at guessing what is the answer.

This board is great!

Keep us posted!

Jen

My 6 year old daughter just got diagnosted with this last week. I started noticing bruising and being irritable and tired. We got blood work done it was 32,000 which they said is really good. Try to tell that to the family no one understands even me what is really going on. Today we went in it had dropped to 24,000. So next week we will most likely do the infusion medicine.
I really don't know when she got this or if it is something new. So was always an easy bruiser and she had mood changes. Could she have had this longer then just a month?

Rsobba - yes, she could have had it longer than a month. Her counts could have been dropping slowly over a long priod of time. However, in the absense of symptoms, you couldn't have known. Since treatment isn't usually done until 20k to 30k, there isn't anything anyone would have done but monitor her anyway.

Rsobba,

My son's doctor says that a lot of children who diagnosed with ITP have probably have had low counts for some time, but it only gets diagnosed when counts become low enough to produce distinct symptoms.

My son was diagnosed at age 10 in 2009, but when I look back, he had bruised easily for a while before that. I can also also remember specific instances of small scrapes producing a lot of bleeding under his skin back to about age 4, and he had a run of heavy nosebleeds when he was 9. Who knows whether they are connected or not? I didn't take much notice of them at the time though. It was only when his count got under 10 that he started having unmissable sypmptoms like bad bruising and petechiae. When he was diagnosed, his count was 5.

Try not to panic too much about numbers - kids can do well on very low counts. There are some children who have got on fine on counts less than 10 for years on end (although I wouldn't necessarily recommend this if you have a choice - results grey haired parents!).

If your daughter ends up getting IVIg, you need to be aware that it can cause horrible headaches and other side effects in some people - if you do a search through old posts, you will find suggestions about how you can minimise these through pre-treating and hydration.

Good luck, Ali

My daughter actually got her blood work done yesterday and here count went up to 57,000 so know infusion. Do I still need to worry that her numbers will go back down or since they raised this much will they continue to keep going up?

Could go either way. There is no way to know.

I just wanted to provide an update. From October until the end of November, my daughter was gradually weaned from steroids and was monitored with weekly blood counts. Once she was weaned they also gradually increased the time between blood draws. While she was being weaned, sometimes her counts would go down, but not to anything as drastically low as when she was diagnosed. In January, after over a month without steroids and three blood counts in the normal range she was told she could return to gym class and didn't need to come back unless she experienced anything that would indicate that her ITP had returned. It was the wish we had hoped for since we sat in the hospital with her blood count of 0/1, for things to be back to normal and for the most part she is back to normal. She is happy to return to gym class and being able to accept the birthday party invitations (she missed several that were held at bouncy house/sports places). We feel very lucky to be where we are now and while we focus on the gift we have been given there is a small part of me that goes into worry mode at times. She's an active girl and uncoordinated as many 6 year olds are, I watch bruising with a twinge of anxiousness. I wonder how she actually got ITP in the first place, was it her MMR shot in August, was it a virus? What does it say about her immune system going forward? Is something else coming? I try not to dwell on those things and luckily life doesn't provide me with much time to worry. This forum has been so helpful to me. I keep coming back to return the favor.

So rsobba like Sandi mentioned counts can go up and down. One blood draw can tell you certain things, but it's really the counts over time that provide a better picture and that can be the frustrating part, the waiting. And as Alisonp stated, the side effects from ivig are no joke. The headache my daughter got after her second dose was brutal and she did all of the preventative stuff and was even on iv hydration beforehand. Good luck on your journey, I really found this forum helpful.

Thanks everyone. We just got her blood work again and it went down to 59,000 which is still high seeing that a lot of kids are way lower then that. I did notice her mood changing over the weekend she gets really crankly and doesn't want to listen or do anything that we ask. Don't get me wrong all kids do that but she did it more often and was more whinny about it, like she didn't feel good. I just hope next week they go back up instead of down. But we do feel lucky they have not got low enough that we know of to have to go to the hospital. I will keep everyone posted until next week.

Well it has been a few weeks since I checked in. Two weeks ago her count went up to 77,000 but then this morning they were back down to 56,000. Which I should have figured because she has the really dark bruise on her knee which usually means they are low or there was a drop.
I know I am supposed to just wait and see but this is killing me to wait to see if this is going to be chronic or acute. I am starting to think this is going to go on and on with the number not always going up. It just seems like every other time there are down then one week they are up.
Just frustrated.
Thanks for listening.