6 yr old with ITP

Hi All,pretty new to this.last week my 6 year daughter broke out in a non blanching rash & obv thought the worst.had noticed a blood blister & bruising. Went to an out of hours doctor & penicillin administered as initially thought it was menigitis. a&e confirmed a low platelet count (less than 10,000),& she was given 2x IVIG over 3 days.we were told she has ITP.bloods rose to 14,000 & we were discharged.repeat bloods the next day showed a count of 15,000.5 days of waiting & we went back to the hospital for more bloods & were told it's now 12,000.i don't understand how they are at that level,all other bloods were fine.told to come back in 7 days for more bloods.just to watch for new bleeding etc.!!!! I feel like I'm living with a ticking time bomb.is this normal procedure??& has anyone been in a similar situation.we are in Ireland & have been given very little info on this.TIA.xxxxx

Cat:

Yes, many people have been in a similar situation. ITP is an autoimmune disorder. Platelet counts are low because the body has problems producing platelets and destroys the ones that it does manage to produce. All other cells on the CBC are usually okay when one has ITP since it only affects platelets. Counts of 10,000 and 15,000 are pretty much the same....counts fluctuate constantly.

Your daughter is not a ticking time bomb. Very few children die from ITP or have serious complications. You just have to be vigilant and watch for signs of bleeding and make sure that she is careful and doesn't hit her head.

Children are not treated all the time because the treatments can be worse than the illness itself. Side effects can be harsh and some are long-term, so they will usually just monitor children. Many times, children remit by themselves within a few weeks or months and ITP is just a bad memory. Sometimes ITP is triggered by a vaccine or viral illness, sometimes by an antibiotic. Hopefully, your daughter will have a short duration and be back to normal in no time. If not, we are here to help every step of the way.

Hi there - I hope things go well with your daughter. It's all a bit scary at first but you will all adjust, if necessary. Our daughter (15) was diagnosed with ITP in May of this year. Her counts are almost always very low (8 - 13 is fairly typical for her). I think everyone reacts differently to different treatments, so it is important for you to be part of any treatment decision-making. We tend to take a 'watch and wait' approach, as she does not have significant bleeding or bruising. We did try IVIg over the summer but it was ultimately unsuccessful, with terrible side effects. We may be trying steroids next. Our daughter had a bone marrow biopsy yesterday in advance of this. I think if I could give you any advice it would be to educate yourself, ask lots of questions of the professionals and of the people going through this. We have gone from weekly blood draws to monthly, because her counts do not really change much, and the weekly focusing on the blood count was just too much for us all. It's a frustrating thing for everyone but just do your best with the information you can find. Hang in there.

Thank you for your reassuring words. I'm just finding it a hard thing to take in. This support group is great because it's like reading my own thoughts & worries. I genuinely never heard of this until last wk & in the past week I've met 2 other families with it. Must be thankful it is nothing else & that my daughter is "well",if I can say that.
It's the not knowing must be the cruelest part.

I love this advice.
And I'm with you Cat. It's a roller coaster for sure. And we live over an hour away from the Children's hospital. It's tough financially to go back and forth every week, with tolls, and not knowing what's going to happen when we get there.

I think I love Pomeroy's take on wait and see. We may opt for that and go monthly instead of weekly [unless of course I see signs of a huge drop.]

Can you get her bloods done locally then ring the hospital with the result to see if you need to go over or not.

Hey.sorry hadn't been on this in a bit.ya her GPtook her bloods one friday in between hospital visits & the result was under 10,000.she sent us straight to A&E but by the time we got there the GP rang to say that the Haemotologist said not to go in,& to only come in if she has external bleeding.app with Haemotologist was in 2 days time.that was prob the lowest I had been.just found it soo hard.so that was one long wkend as ye can imagine.

Hope the biopsy went well pomeroy.did ye have to wait long for results?

Just an update: Following the bone marrow biopsy (results were good, thankfully), our daughter was started on a seven-day course of Prednisone. After four days on the steroid, her platelets rose to 179 (from 9 the week before). Yesterday, after four days OFF the Prednisone, her platelets were 315. So all good news for the moment at least; however, the side effects from the Prednisone were just grim. The doctor is suggesting a six-week course of Prednisone as a next step if her platelets drop but I believe we would choose to just go back to watching and waiting, and then using Prednisone if we needed her count to rise for whatever reason. Again, I think it's a matter of different things working for different people. I am happy we now have a possible treatment if we need one, but it felt like we were deliberately poisoning her while she was on it. Just terrible. Anyway, as you likely know, this is a very frustrating disorder and there is not a 'one size fits all' approach to any of it. We all just have to learn as much as we can and try to make the best decisions we can for ourselves or our loved ones.

Results were quick over the phone for initial results (within two days). Further genetic testing will take up to six weeks to get.
The biopsy itself was...well, not sure how to describe it. Luckily they gave her a general anesthetic but she woke up partway through (thankfully she does not remember this - a nurse reported it to us). The anesthetist just put her back under. The nurse told us they had to 'go in twice' but I saw four holes on her hip bone area, so not sure exactly what went on in there. A pediatrician training to be a hematologist did the biopsy, under the supervision of our hematologist, and with our permission. I am usually in favour of helping train new doctors but I am not sure we would agree to that again if she ever needs another biopsy. She was pretty sore for quite a few days. And the extra general anesthetic wasn't great either.

We have my daughters bone marrow biopsy in 7hrs.so can't sleep.hoping & praying for good results.we are nearly 4wks in to this.just wish there was a one stop solution for ITP.weirdly I have been calm all day. I like these days,life feels relatively normal.☺️
Pomeroy,that is fantastic results.its great to know that the steroids work & if she needs a big jump up in platelets,ye have a solution.
Just re physical symptoms of ITP,she initial had the petechia,bruising & mouth blisters(& mouth Petechia)....NOW,minor bruising with the petechia(a bit under her arms),but no mouth blisters.surely that's a good sign?

Seems like few symptoms would be a good sign. Our daughter has had very little in the way of symptoms, even with platelets as low as 8. No idea why but we'll take it. Hope the BMB goes okay for you guys and recovery is quick. Hang in there.

Can I request a bone marrow biopsy? I'm not sure if it's something the doctor has to say yes or no or if I have the right to request that.

You can suggest it, but it's not necessary to diagnose ITP. Protocol states that it should be considered in patients over 60, those who do not respond to treatments and anyone considering a splenectomy. Other than that, it's an invasive test that isn't really needed.

Our daughter only had the bone marrow biopsy to rule out other, more sinister, diseases. the doctors wanted it prior to starting her on a course of Prednisone (a steroid), as Prednisone can 'mask' other illnesses. They just wanted to be sure of things before starting the medication. However, it really is an unpleasant procedure and with kids includes a general anesthetic (at least at our hospital). I wouldn't recommend it unless there is a good reason. My opinion, for what it's worth. But if you think it might be necessary, just have a conversation with your doctor.

How did things go? Hope everything is well with your daughter. Feel free to email if you want or need to talk to someone. Sending good vibes your way.
Cheers.

Hey.....thanks for a all the good thoughts,they definitely worked.

Hey.....thanks for a all the good thoughts,they definitely worked.

Hey.....thanks for a all the good thoughts,they definitely worked.
She had the bone marrow done 2days ago.she was given a general anaesthetic & the procedure took 10mins.(In hospital for 8am,procedure done around 10am & we were home for 4pm)....results were the day after & it was perfect.Loads of baby platelets in the bone marrow so was then ruled that it is ITP. Obv relieved it is nothing more sinister, but still worried. platelets are 9,000. So nothing is improving there but at least she can be considered for steroids as the Nxt step.