Parents decisions different - advice?

Hi to all the Parents of Children with ITP.

Throughout my reading on this forum, I have noticed that a lot of those living with ITP generally go with the 'wait and see' approach unless counts are REALLY low. Having a child with ITP, the Drs seem to treat parents with the attitude that if I don't treat when my daughters counts are below 'normal' then that is not right.

Steph was diagnosed with ITP for 5 months before I found this site. During that time, I panicked every time her levels were under 150. I was encouraged to 'wrap her in cotton wool' when counts were below 50. Since finding this forum, I have allowed myself to embrace my 'gut' feeling and let a few things slide, and let her do a little more - much to the doctors dismay.

Last friday, Steph had a 'Bounce Party' to go to. (I'm sure they are all over the place.) It is an indoor trampoline centre, where the tramps are all interconnected and built over foam pits. No hard edges, no springs to get hurt on - safe and soft! She had been looking forward to it for 6 weeks, her friends mother is a nurse and aware of ITP.

I had a draw done the day before and her counts were 124 (pretty good I thought!!) I then received a call from our Doc asking for Steph not to go. Against the Docs wishes, I let her go. Keeping in mind she is nearly 11 years old, and is a very sensible girl.

I suppose I'm not asking you whether I was right or wrong with my choice, but different opinions, so as maybe I can see the doctors point more clearly.

Thanks for listening
Jac

Is your doc a general pediatrician or a hematologist? And, has she had sustained decent counts? General pediatricians don't deal with ITP enough to be conversant and comfortable treating it, and pediatricians don't like bouncy houses and trampolines even for kids without ITP. There are plenty of ways to get hurt on those, with broken arms, etc. That said, most parents of normal healthy children have let their kids do a thing or two that is frowned upon by pediatricians. At 11, she should be able to have the good sense to protect herself somewhat and to get out of the bouncy house if the activity gets too wild. We used a wonderful and diverse group of pediatric hematologists for our daughter. They had varied outlooks and opinions, but all consistent with generally accepted ITP treatment standards. While I'm sure they would never recommend a trampoline, they basically okayed any normal activities if her count was over 100, and most activities at 75 or higher. She could play tennis at 35 and higher, so long as she didn't go for the corners. Roller coasters, for example, probably aren't good for any of us, with all the head banging, but our hematologists okayed those and other theme park rides at 100 and above. Since the normal range is an average, I am guessing some normal persons without ITP routinely have platelet counts that are lower than the normal range, but "normal" for that person. Being under 150, when you know that other causes have been ruled out and the diagnosis is ITP, shouldn't frighten anyone. Not only is ITP treatable (when necessary), it is manageable and livable.
Norma

This is a published guide that can be helpful. I do think your daughter's doctors are a bit over-cautious. 124 is a great count and should be good for nearly any activity.

www.itpkids.org/content/itp_sports.html

My doctor is pretty strict on what Matix can and can't do because his platelets yo yo so much. I just wish he had the energy to "want to" do some of those things

My son's doctor is happy with him doing trampolining at school as long as his count is over 30. He went paintballing today with a count which I am sure is under 30. Worrying about any activity with a count over 100 seems a bit over cautious to me.

Over the years, I have learnt to be selective about what I tell the doctor

My daughter's pediatrician is the opposite. Hannah's count has only once been above 22 and that was only 34 for only a few days. The pediatrician has told us she can do anything and there are no restrictions. Maybe I'm wrong (it would be interesting to hear what others think), but I think that's a bit too extreme. I let her go on trampolines only on her own and only if it has a surround. I would definitely let an 11 year old go with a count that high.

Thank you for your insight.

Norma, Stephs Dr is an Immunology specialist - she also has Chronic Granulomatous Disease. Her counts haven't been stable unless on pred. We are in the process of tapering, but I don't think they will hold.
Alison, I think I will also start to be a little selective.