Watch and Wait - When to treat

Hi everyone,
My daughter has chronic ITP for 2 years. Her platelet counts have ranged anywhere from 20,00-25,000 over the last year. She is not being treated with any meds yet. Her symptoms are easy bruising and mild petechiae, but she is not a bleeder.

We just had her counts done today and results were 16,000 -- her lowest yet since she was diagnosed. Of course, we are panicking. My question is for those folks who take the watch and wait approach---how low do you let the counts drop until you treat? I assume the first line of treatment will be steroids or IVIG to get her counts back up.

Barb,

JJ here. In our case, we have let her get as low as 3,000 and hoped it went back up before any bleeding or bad mouth sores occur. The whole key, in my opinion, to the watch and wait approach is that you only treat if there is an issue. Hope that helps.

When we were doing the "watch and wait" approach, we would just watch her symptoms regardless of what the count was. Most of the time her count was in the 5-15 range and we didn't do anything as long as there was no active bleeding. What made us turn to treatment was an injury that resulted in a long nosebleed and then really dark bruising and petechiae all over her body, including her scalp. The dr (who strongly supported the watch and wait) suggested that we start treating her because she was just too active and really didn't seem to get that an injury with low counts was not ok. She was getting bloody noses even before that, but we were able to stop them within 15 minutes and since the drs didn't seem worried about her symptoms, I tried not to worry. (It was hard, but I had to trust my drs and I was on here often asking questions.)

Everyone is different, but you have to be comfortable with your decision. It would be nice to never have to put a single drug in your child's body because then you know nothing is hurting them in the long run. My daughter (now 12) has been on an injection for almost 3 years and while it allows her to do what she wants, we don't know what it is doing to her long-term. Will she be able to have children in the future? Will this cause problems for her later? These are questions I have to try to push aside when I am thinking of the "here and now" and keeping her happy for the time-being. I think the process of "treatment or no treatment" is one of the hardest decisions a parent of an ITP child has to make. If your child is old enough (like mine was), then let them help in the decision-making process. (Caitlin was ready to go through a splenectomy because she didn't want to deal with this anymore.)

Thank you so much to both of you for responding! I am just so frustrated by this disorder! Hearing your words gives me some peace of mind, and I just talked to my hematologit's office and they are not alarmed given my daughter is absent of other symptoms (no bleeding issues for now).

To Caitlin's mom -- what are the injections you mentioned? We know someone who's son with ITP is on Nplate and doing quite well (platelets in normal range). I agree with your point that it is a tough balance between treating the symptoms now and not knowing what the long term impact will be.

We go back to check counts tomorrow.

Thank you again for listening!

Just to agree with both of the people who have responded so far, I don't think there is any magic number at which to stop watching and waiting and start treatment. It depends on the sort of things your kid does and what their symptoms are. In the UK, treatment is much less common, and my asymptomatic has been down to 1K on a few occasions without being treated. His haematologist does not really favour treatment at all unless there is active bleeding. But of course, if you've got a kid who really can't be trusted to stay out of treetops or something similar, you might want to take a different approach if you have the choice. I mention this, because at the time of his worst counts (under 10K) I found a video on my son's phone that showed him at the top of a horse chestnut tree throwing conkers down to a friend!

Good luck with the next count.

Ali

Hi All--
We had my daughter's counts checked again last Thurday and her counts were 20,000 (they were 16,000 last Tuesday). Given this move, they decided not to treat her right now and she has no outward symptoms (no bleeding).

The hematologist recommends we get tested again the week of Thanksgiving and we have an appointment with him on 12/10. Actually, he recommended we not check again until 12/10, but he also knows we and our pediatrician are so nervous and thought we'd all feel better to check mid way through until our appointment, unless something else comes up that would require us to check sooner.

I did ask what count number "alarms" them, and if everything stays the same, they will not touch her until she goes below 10,000.

If it makes you feel any better, our son was at zero for well over a month and we still did a watch and wait. As a matter of fact, we agreed to prednisone and did it for 4 days and he bled like a stuck pig. We pulled him off of it and went back to our watch and wait. After sitting there for a month longer after that we finally used a homeopathic treatment and got normal platelets again. So you can watch and wait really as long as they aren't having serious bleeding symptoms. Even then, when my son was bleeding (and he was bleeding out of every orifice), we treated him symptomatically and just tried to get him back to ground zero where we were before the pred. and he'd started bleeding. Took us about 24hrs. So you don't "have" to do treatment at a certain number. Has more to do with your comfort level and their symptoms.

patti