Son's 2nd time with ITP,I have questions???

My son was diagnosed last year with ITP and his count never got any lower than 19. They never treated him, he had some bruising but that was about it. It finally went away after about 6 months. This year September 10th he was once again diagnosed with ITP, his platelets were at 2 when they checked them and they said since he wasn't actively bleeding they were just gonna watch him and sent us home. Of course I panicked with them being at two and not knowing much about this. The reason I took him to the doctor in the first place was bc of all of his bruising and petechia, looked as if I had beat him all over Then on September 20th I took him in to get his count again and he was spitting up blood, the nurses at the doc office panicked and sent us to the hospital. They admitted him and gave him steroids to begin with and then gave him an IVIG treatment. He did really well during the treatment and even after too. The were about to send us home the next day when the horrible side effects kicked in. He was screaming in pain from the headache and then started vomiting. I felt so sorry for my lil guy! Finally we were able to get him a supository and they sent us home. His platelet count was at 23 when we went in the hospital and after the treatment were at 15. Doctor said it would take a few days to work. We went home and he rested the remainder of the day, felt great the following day. One week from then we had his count done again and it was at 8. The week after that it was at 9 and the week after at 2. Figured with it being at two and him spitting up blood again they would have done something but nope they sent us home. This past Thursday he had his weekly check again and they said it was less than 1. I felt for sure something would be done but once again they sent us home. My question is this, Is it normal for them to be this low and the doctors not want to try to do anything? It is so hard to keep an active 9 yr old from being wild and rambunctious. They just keep telling me as long as he isn't actively bleeding that they will not treat. They keep telling him to be careful, don't fight with your siblings, don't hit your head etc. With them being this low is it not possible to bleed on the brain? I just need answers and I'm not getting any from the doctors. They keep saying this was a viral thing but he hasn't been sick in 2 years. Anybody who has anything to comment, please feel free. I'm so glad to have found this forum and found other people dealing with what we are, its so frustrating!!!

Hi,

It's perfectly normal for kids not be treated with extremely low counts. Most treat symptoms than the count. So if your kid does'nt have any worrying symptoms then no need for any treatment.

It's really sad to know the remission was only for 6 months. You mention initial diagnosis was a year ago and it went away 6 months later. How was it concluded that it went away after 6 months? Sometimes a single count may not be proof enough as the higher counts need to sustain for a period of time, before one can be certain you are out of ITP. I am starting to think, if it never went away and the counts were up and down in the mean time.

Hope all goes well for you.

Thanks

We went back Thursday and he now has zero platelets, that just seems so dangerous. Anyway when he had it last year I still periodically had him checked, especially if I saw a small bruise. He was fine until September when I noticed huge bruises and took him in to be tested and found he had it again.

Scmom:

Hi. Welcome to the forum.

Chances are, your son was in remission the first time and the remission ended. It's not really a second time with ITP, it's most likely just a continuation of the first.

IVIG can cause aseptic meningitis which is probably what he had when he was vomiting and had the headache. It's a fairly common side effect. It can sometimes be prevented with pre-meds, a slow drip, and hydrating the patient before and during the treatment. It goes away on its own. It doesn't sound like it did much for him anyway, so it might not be worth it to use it again.

Is he still taking steroids or was it a one time thing in the hospital?

I would not be comfortable with that low of a count either if it were my child, but there is a tenancy to not treat children, especially in the UK. It seems to be spreading to the US, so some doctors do not treat while others do. A count of 5 is basically the same thing as a count of 1, so try not to fret too much about that part....low is low. Symptoms are sometimes more important than the number, so you want to pay more attention to that. I don't have a child with ITP, I'm the one that has it, but I've gone to work and did my normal thing with counts of 3. My only symptoms were bruises and petechiae. Of course you want to take this seriously and yes, bleeding in the brain can occur, but it is very rare. Hopefully other parents will chime in. There are a few with children that have had low counts for a long time and they do not treat either. There is a chance that your son will remit spontaneously again.

Did they happen to determine where the bleeding was coming from when he was vomiting blood? Was it a lot or a little?

I've seen doctors try to pin many things on a viral infection when there was no virus. Anything could have triggered the end of his remission. Just try to stay calm and take one day at a time.

Hi

I am one who knows how scary and frustratig these really low counts are! I can't offer much because everyone feels different and take different path's. My son's count was less than 1, and stayed that way for 10 months til he finally hung around 10! He was only 1 yr old. We treated like mad..3 straight weeks pretty much in hospital just trying to get to 20. After 10 IVIG's 2 Win-Rho's many steroids and finally a BMB/BMA they decided putting all this in him is not worth it, so we stopped treating.

Fast forward, almost a yr still crazy low they bring up treatment, after being so low, so long, so young I was so confused, but he had finally made a small jump all on his own and the treatments weren't easy ones..So we never said NO, we just put it off..we are now headed into 16 months of ITP he is at 20 now (rather he is staying here we aren't sure it is possible he will drop) but he has been ok!

At first the idea of not treating and letting him live with no platelets scared me and I was NOT comfortable, they didn't really give me a choice though. After doing it for so long, reading so much, and researching treatments I felt much better, and than became more scared of treating than ITP itself.

It will get easier..Good luck!!

My son (aged 14) also doesn't get treatment regardless of counts - as Sandi has pointed out, children in the UK are only treated on the basis of active bleeding symptoms and not counts. My son has had ITP for 3 1/2 years now and mostly has counts of around 5-15, occasionally lower or higher. He's been fine and enjoys a very active lifestyle, although I can't say I never worry!

You and the doctor have to balance the risks/unpleasantness of treatment against the risks of not treating - have a look round on the literature and you will see that the risks and effect on quality of life of treatment are not unsubstantial (as you have already experienced with the IVIg).

I'm not telling you not to worry because thats impossible, but it does get better, honestly!

Good luck, Ali

Thank you so much, this forum has really made me feel so much better! As for your questions, no he isn't taking any steroids and only had one dose in the hospital right before his IVIG treatment. As for the spitting up blood, he would just feel it in his mouth and spit it out. It wasn't alot but it was happening pretty frequently.

Thank you so much! How old is your son now?

Thank you so much! When you say your son leads an active lifestyle does that mean you allow him to participate in sports? The hemo told my son he needed to keep two feet on the ground at all times. He is 9 years old, very active and has 4 other siblings, its hard for me to tell him No you aren't allowed to go outside and play like your brothers and sisters.

Active lifestyle = cycling with a helmet on, playing football (soccer), scout camp, PE lessons with the exception of rugby, boxing and hockey.....he does pretty much anything any other 14 year old boy would do. He was really miserable when we were being very strict about restrictions and so were we, so now we only stop the really obviously dangerous things, and the rest, we just make sure that we take all reasonable precautions -no soccer if he has obvious signs of being under 10K, helmets, padding, making sure that the PE teacher knows about his ITP etc.

To be 100% honest, I am not even sure that we manage to stop the really dangerous stuff, because he isn't with us all day - I and pretty sure (from the state of his school shoes) that he joins in with playground football in his lunch breaks at school, and I have seen videos of him up trees. I try to turn a blind eye otherwise it would worry me too much.

I'm another mom -- 13 year old daughter, 9+ months of ITP -- and we went from the aggressive treating when her platelets were low (ie. below 20 and esp below 10) to NOT TREATING. She is much happier. We are much happier. Her platelets go up and down but not as radically and with such associated risks (imo) as when she was being aggressively treated (AntiD, 3 Ivigs including one allergeric response which was terrifying). She has stopped playing soccer but otherwise active. We treat the symptoms now and not the numbers. In last 5 months this has meant that on two occasions when she has shown some minimal bleeding signs -- blood when she blows her nose with pettichae on legs and another time some very small blood blisters in her mouth -- We gave her a couple of days of prednisone orally, not much at all, until the symptoms went away. Our hematologist is on board with this.

We've noticed that over time her symptoms have improved dramatically even if her numbers have not. She has fewer if any bruises, no more bloody noses, etc. The few platelets she does have are doing a better job, I guess.

As the mom, I found it scary at first not to treat, but I took great solace from moms like Ali P! At a certain point, the treatments felt scarier to us than just watching and we "crossed over." Good Luck to you!!!! Sending best wishes.

Okay so today we went back to have my son's weekly check and it was still at zero so I thought it was going to be as usual and we were leaving till next week. As we were walking out of the play room the doc asked to speak with me. He said that since his count isn't going up and he is such an active child that he would like to treat him with prednisone liqued form bc my son won't swallow a pill. He also said that since he has had this for so long that he was diagnosing his as chronic ITP and not acute any more. I said well he hasn't had it long this time but its like someone else stated, it probably never went away. So I would like to know what are the side effects of prednisone and those of you have that children that take it, does it cause mood swings? I haven't meantioned this before but my son is already ADHD amd takes Vyvanse when I can get him to, also and I haven't actually had him tested but I believe he is also bi polar! His dad is and his grandfather is(whom he never met)and Skylar shows all signs of it. He has horrible rages where he throws things, hits me, screams at me etc. You get my point, its Horrible!!! These rages last for long periods of time. So not only am I dealing with ITP, I'm dealing with behavioral issues as well. Please help, any input would be much appreciated. If this steroid is gonna cause more mood swings I don't think that is the route for us to go and the doctors other option was removing the spleen. HELP!

Goodness, you have your hands full! Prednisone can cause mood swings, sometimes severe depending on the dose and the person. You're right, this may not be the best option for him. Sometimes a low dose can bump the counts up without too many side effects. What dose was prescribed?

If you were only given two options, you need a second opinion. There are other treatments to choose from.

Well he didn't start him on them yet but he did say he would start out with a high dosage. He wanted me to talk to his dad about it first and then get back with him about it after we made a decision. We've tried the IVIG already once and it didn't work at all so he said no need to put him through that again. I read about other options on here but for so many of them they don't seem to be working. Removing the spleen would be my last and final option and really not even an option in my opinion. So tell me what other options are there?

I am sorry going through all that, frustrating! My son was only 1 and he had some mood swings. He was cranky on steroids and had aweful time sleeping at night.

Hope things start looking up for you soon!

You never know how any one person will respond to a treatment, so don't count it out just because it didn't work for someone else. All options are open to your son. All of the treatments listed do work for a certain percentage of patients or it would not be a valid treatment for ITP.

He could try a low dose of Prednisone, maybe 20 mg's. He could try Win-Rho. He could try low dose Rituxan. He could try Promacta or N-Plate. There are also other immunosuppressants such as Imuran or CellCept. I'd consider these last though.

My then 10 year old had two weeks of prednisolone (37mg a day) and didn't appear to get any side effects at all - no hunger, irritability, sleeplessness, no nothing. So it clearly doesn't work the same way for everyone. On the downside, it didn't give him many platelets either though.....

Very true!! Everyone reacts different..Many people feel horrible from IVIG, we didn't notice any side effects with that! I should of mentioned my son was on 45mg, 25 lbs and 1 yr old, so being cranky and not sleeping is probably pretty reasonable?

So I have an update on my son and its finally good news Skylar has been on steroids for 2 weeks now 6ml twice a day. Last week his count went from zero to 124,000 and this week it had risen to 495,000. I am so thankful that we took the steroid route, I just pray when the time comes for him to get off of them that his count will stay up. The mood swings got to be a lil much to handle, which as I said before he was having them before the steroids. I went to have a consultation with his pediatrician and told her what was going on. She said that it sounded like Skylar was ODD and starting the early stages of bi-polar and that we needed to nip this in the bud quick. She put him on a trial medication called intuniv and I have to say it has been a godsend! My son went from hitting me, screaming at me, throwing things, hurting his siblings to being sweet, loving and he has learned to control his anger. I have my son back and i am so thankful. Life in my household has been so much more peaceful! It has been an amazing transformation and sometimes I have to stop and say....is this my child? LOL! Well I will update again soon but I wanted to share this wonderful news with those of you that have been following me.