TOPIC:

Hannah's now had ITP for at least 4 years (she is nearly 7). Her count is always under 30 and at the moment it is at the lowest it has ever been at 5. She has had no major bleeding just gums from teeth coming through or cominf out which has been stopped with tranexamic acid. She bleeds a lot if she cuts herself and is always covered in bruises and petechiae. The main problem at the moment is fatigue which is really affecting her school work and she is now having one afernoon off a week to rest.

She has never had any treatment before. We have always been told no treatment unless she has serious bleeding. However, we have been told now that if we would like to try steriods we can as she is so tired all the time. But, the haematologist said it maybe better to wait and put us off by saying about the side effects and that it only works it 60% etc.

I habe heard how everyone hates steriods and read all the side effects and decided that we wouldn't give her steriods at the moment. However, I was chatting to a haematologist from India on a facebook group and he was saying that in chronic ITP the risk of serious bleeding with a count of less than 10 is very high and we should treat. Our haematologist says that even with a count of 5 the risk is still extremly low and we don't need to even stop her doing any sports at all.

I'm finding all the different opinions very confussing and don't know what to believe. Is the risk of bleeding at a count of 5 high enough that we should give steriods and if so is there platelet count at whoch you would treat or do you just go by symptoms? Would you give steriods just to try to combat the fatigue?

That is a tough dilemma and really just a personal choice. I wouldn't let that doctor scare you since Hannah has had low counts for so long and has done just fine.

Many adults choose to treat because of fatigue at low counts. You could start with a reasonably low dose (20 to 30 mg's) and go from there. Some people are so responsive to steroids that a low dose is all that is needed. It would be easier on her in the long run. The problem with steroids is that when tapering, the withdrawal can also cause fatigue that can be even worse than the low count fatigue. That was my experience, but it does pass.

It might be beneficial to see if she responds so that you would have a treatment plan in place if the need to get counts up ever arose. If it doesn't work out or if side effects are too rough, you can always get her tapered off and be done with it.

Thank you for your reply Sandi. You're right, it is a really tough dilemma. I still have no idea what to do. One minute I am convinced I know what to do, then a couple of hours later I change my mind. I am trying to get as much info and ideas as I can in order to make the best decision possible. It's really usefull to hear from someone with lots of knowledge and experience - thank you.

Good Luck with your choice, making these decisions are so difficult, especially when it is for our children!

I wouldn't take any notice at all of a doctor you spoke to on the internet. You don't know his credentials or if he is even really a doctor.

Fatigue is a good reason to treat but is there no alternative to steroids?

Hi there,
ITP is very new to me..my toddler boy (19mo) was just diagnosed two weeks ago and since his levels were so low at a 3 we did opt to give him steroids. I think out of fear of a serious accident should happen and to see if they would be effective and hopefully work!! I wasn't walking out of the hospital to do no treatment, since he is so Young. Anyway our experience with steroids was not the greatest. I didnt realize how terrible the steroids taste. They never really stressed that in the hospital so we did liquid form. We struggle from the 1 dose till the last to get them in him. I was even calling his hemo dr. Back asking for a different form we tried pills & crushing them into things and that wasn't effective. And believe me we tried putting them in everything!! Choc. Milk, ice cream, apple juice, apple sauce, yogurt and he would cry and point at his toung. Poor thing! don't think we were ever able to get a whole complete dose in him with in the 5 days he was on them. So whatever he ended up getting in him brought his levels up to 42!! Which we were very excited about, but then this week they dropped way back down to 10. the steroids also made him very cranky and in the end I honestly dread having to ever give them to him, it was difficult. I am hoping for a different option next.
Good luck and go with your gut. This was just our experience and like someone else said its a personal choice only you can make for your child.

Yes, Prednisone does taste pretty bad, I can agree!

All of the treatment options have cons, so it's hard to know which one to try. IVIG is another option, but it takes a long time to infuse and there can be nasty side effects with that too (aseptic meningitis). It is also a pretty temporary treatment, most only get a rise in counts for a week or so. However, it is a viable option for a child so young since there are not long term side effects associated with it.

Hi everyone,

Rachellee, there are so many similarities between your experience and ours. My son was diagnosed at 15m with a platelet count of 3 and was admitted to the hospital. We have had the best results with IVIG. We've given him steroids several times but the results rarely seem worth it for the headache (and heartache) we go through with the side effects. Several times IVIG has gotten him up to 100 or higher. We have some decisions to make again after going 18 months without a treatment until this week, when we started dexamethasone. I'm not crazy about the long term side effects from using steroids too often, so we've got some decisions to make too. All in all, I prefer IVIG to steroids even though it means an IV and a day in the outpatient clinic.

Hang in there!

The first time my son was diagnosed (3yr old) we treated with steroids and had a good response although the taste was an issue (had to hold him down and force it in his mouth) and he went into remission after 6 months or so. The side effects sucked though - from cranky/moody/tantrums, to water gain (moon face), to wetting the bed, to increased appetite, to feeling off balanced and falling. It just sucked. Also unfortunately they don't always work. They worked when my son was 3 but last year we tried it (8 yr old) and he had no response to the steroids at all (but all the side effects). I wouldn't treat just because of her levels. If she's been fine this long then continue the course. If she were to having bleeding issues then treat.