Very low count but with no treatment

My 9 yrs old son was diagnosed as ITP with very low platelet count 4K two weeks ago. He first showed the symptom of petecchia on his feet and a little bit around the gum, and of course some bruises on legs and arms. There was no active bleeding. The hematologist suggested the wait and observe approach. I kept him at home for rest, and found petecchia would disappear in 2 days. After one week, his count was still 4K but without petecchia. The doctor still suggested the observation approach with no treatment. I noticed if he took a shower (not too hot or too long), the feet started to show new petecchia. So I only gave him sponge bath or a very quick rinse. But today, he went out and ran around a little bit, the petecchia starts again. Has anyone incurred the same thing? Is this no treatment approach safe for this very low count case? If a kid can recover himself, how long will it take to show improvement of count? or waiting too long without the treatment, it is to increase the chances of becoming chronic? Thank you for your information.

Mary

Hi Mary

Sorry to hear about your son - ITP is such a nuisance, and for us parents, so easy to panic about too!

A bit of history. My 10 (now 11) year old son was diagnosed in May last year. He had a count of 5K, stayed overnight in hospital, and went home with a count of 8K. His count hovered around the 10K mark for the next 6 months, sometimes getting into the teens, sometimes going down to 1K. He missed a bit of school due to appointments, but only 1 day because of his count. Most of the time he also continued to play sports, albeit a bit more carefully. Since November last year, his count has improved and now bounces around all over the place (15K to 124K). Mostly it seems to be around 30K.

In the UK it is very uncommon for children to be treated for low counts unless they are accompanied by significant bleeding - I mean something more than bruising or petechiae. My son did have a couple of weeks of prednisolone when the doctor at the local hospital thought he was having problems, but I wouldn't do this again based on the symptoms he had then. The side effects of most of the drugs used to improve platelet counts can be very significant.

I am a great fan of wait and see as an approach. Although the symptoms of ITP can be scary to look at, they are mostly just cosmetic. They are probably not going to do your son any long term harm. I don't think that treating ITP makes it get better quicker, or less likely to become chronic. I've never seen anything to suggest this. I do know however that not treating it hasn't done my son any harm. You need to be very aware of his symptoms and what to watch out for - as you have already found, petechiae are a good indicator. And you also need to be happy with this as an approach - if you can't live with it without worrying too much, you need to tell the doctor this.

As to when you might expect improvement: I think that my son's doctor says that 3/4 of kids are improving within 6 weeks, about 80% improve by 6 months, and about 90% are better within 12 months. Annoying as it is, the answer to your question is going to be "I don't know". How long is a piece of string? Older children are a bit more likely to have the chronic form apparently. It gets easier to deal with I think. I was talking to my mum last night, and she was asking how Dougie was - I said that he was having less problems with ITP than my niece does with asthma, which I think puts it nicely into context. I do think that Dougie is very lucky not to have many symptoms though.

I hope that your little boy improves soon anyway. This is a great place to come to for information and support - just talking things over with other parents solves a lot of worries I find.

Ali

I think Ali said it best...you have to be comfortable with doing the wait and watch approach. If your son isn't having any major bleeding issues then doing this approach may be best for him. But if your not comfortable with it then you need to tell your Dr.

My son will be 3 in Sept and we have been dealing with ITP since Nov 09 ( he was first diagnoised when he was 14 months but after he had a IVIG treatment his counts went to normal numbers for over a year) He is now considered cronic because he came out of remission....so far this second time around we have not done any treatment. The magic number is 20,000 for his hemo. Everytime we go in for a CBC i pray it's above 20,000. It's funny because when it first came back i would pray for normal numbers but now i just pray for safer numbers.

I have moments when i don't feel comfortable with this approach only because he is so young and telling him to be careful goes through one ear and out the other. I try my hardest to be strong and not let him feel my fears....but some days i'm sure i'm not very good at that.

I hope all goes well with your son and this forum has truley been a wonderful place to come and learn more about this delicate disorder.

Deanna

Thank you Ali and Deanna for your information and support, which eased my anxiety quite a bit. From what I learned from this forum, personally I prefer not to use those treatment if it is unnecessary. I guess we just need to be patient and do what what are supposed to do-wait with a positive attitude. Thank you!
Mary

When our hemo said that she wanted to do the watch and wait approach i was very nervous but she gave me some very good advice....."Relax, keep a close eye on him but at the same time let him be a normal 2 year old" and most importantly "don't let him feel your stress". Sometimes easier said then done right. But she was right!! Keep us posted on how he is doing, we'll be praying for good numbers all around!!

Deanna