Nerves have the best of me!

Hi All,

I've followed PDSA for several years now, but this is my first post. A quick background - my now five year old was diagnosed when he was 3 with ITP. His lowest count was 5K and he has gone up and down since (two IVig treatments). We are somewhat resigned to a chronic condition. But, while it has been 2 years, I still sometimes let my nerves get the best of me. His counts were actually quite high at his last check, but he's now "crashing" as we call it, with the return of petechiae, much bruising, tiredness, etc. After tonight's skin check, he'll be in for labs in the morning to see how far he's gone down... Bummer.

So, I guess, I just wanted to seek some reassurance. How do you know that your child with ITP truly doesn't have something else? My son has swollen lymph nodes right now, he's quite pale, he gets tired a bit easily... This is all usual stuff when his counts go down, but part of me just can't help but worry every time that it's now something worse!

We try not to ever make a big deal in front of him and he's carrying on as if nothing is wrong at all, but what a roller coaster for mom & dad!!

Many, many thanks for your support. I appreciate being able to reach out. All my best to those in the same situation.

Swollen lymph nodes are not part of ITP. My guess would be that he has some sort of virus that is causing that and also bringing his counts down.

Most children with ITP do not end up having something else. The few times that it has happened, the children were diagnosed pretty quickly after the low platelets were discovered. I think I've seen two cases of aplastic anemia in children, but they knew within a few months.

The other common possibility is Lupus, but your son does not fit the profile. It mostly hits girls and he is awfully young for that diagnosis. Not that Lupus is impossible, but it would not be likely.

The truth is....you really don't know if it may be something else until it happens. If it does, you will deal with it. In the meantime, no point in worrying about something that may never happen.

Sandi, out of interest what is 'the profile' of having lupus that you mention?

Well, it mostly affects girls, although boys can also acquire Lupus. I think the odds are about 80% for the girls. It's also rare to hit a child that young, but occasionally, it does. So to have a young boy diagnosed would be very, very rare.

Thank you for your reassurance. It would make sense that his swollen lymph nodes are a result of a long month of colds and a stomach bug. And, if his immune system is in over-drive, the next obvious result is a platelet drop. It's a cycle that is tough to get used to. He is having blood-work drawn in the morning (a CBC). Does anyone know if that would raise a red flag *if* there was anything else going on OR would the doctor need to specifically test for something else? We've not actually contacted our oncologist to discuss as we felt like because he "only" has ITP, we didn't want to bother her. Nerves!!! Thanks again for taking the time to respond to our earlier post.

It depends. An abnormal CBC could point toward cancer but not an autoimmune disorder. In either case, additional testing would need to be done to determine what the exact problem is. I'm not talking about white cells that are a bit low; it would have to be off the charts and consistent. The doctor would know if it's something to worry about.

Symptoms are also a big indication of other illnesses. Fevers, weight loss, fatigue, loss of appetite, etc. If your son is active and wants to run around and play (other than when he is sick), chances are he is fine.

I worry about the same thing all the time as well. My son has abnormal labs as well and they just continue to tell me he is just an atypical ITP case. He also has lymphadenopathy all the time. His BMA and BX was not exactly normal either. My mind constantly worries that there is something else going on. My son is 8. I am sorry that you are worrying, and I am not much help. I just wanted you to know you are not alone.

Thank you for your support! It is always so hard not to worry and while I do not wish that on any parent, it is nice to know that others understand how you are feeling. (Thank you!!!) My little guy also has epilepsy, but he's had no other diagnosis to do with his blood counts, etc. We just keep being told that he's just an atypical ITP case - same as you! And, so, we just keep waiting and watching, drawing labs, waiting and watching, etc.... While we know it could be so much worse, it is still a challenge in its own way that is very exhausting! I hope that both boys outgrow this and go on to perfectly normal lives - fingers crossed!! Thanks again for reaching out.

It is a daily challenge for all parties involved. I also hope that your sweet little boy gets better soon as well. This ITP is so confusing, hard for the kids, and equally hard for moms and dads. Keep me posted on how things are going!