How do you handle autonomy with your ITPer?

Hi,

I have an 8-year old girl who's had ITP for a little over 5 years now. She typically runs around with counts around 35K or so, but sometimes lower.

In the earlier stages of life and ITP, I've been able to be around my daughter when she goes to various activities such as play dates with friends, the park, etc. But now as she's getting older, she's pulling at the reins (as she should) and wants to go to the park by herself and friends who I don't know, want her to come over and play with them. And my question has become - how do I both keep her safe and give her some freedom and the ability to have a more "normal" life?

This is further complicated because she is also testing the limits of her physical abilities more. Before I could definitely count on her making sure she was doing safe-for-her things and now I am less sure. At school, I feel more confident because everyone has been briefed on her condition and knows what to do if there is a problem.

I was wondering what some of you do if your child is visiting someone's house for the first time? How do you prepare the parents? And what restrictions do you have for when your child is out and about by themselves? Any other advice you can think of would be fantastic!

Thanks so much for your help,
Katrina

One of the things we have done is Kayla (9) Has two very best friends who know all about her ITP and Kayla's limits.
When Kayla isn't feeling very responsible her friends have stepped in and helped her make better choices. Most of the time she does great but they have had to get her to go tell her teacher when her gums start bleeding. It eases my mind knowing there are 3 9 year old brains looking out for her:-)
We are lucky in that Kayla's "Normal" counts stay in a higher range with the random dips to low numbers.
I hope this helps.
It's tough when they want to see how much does it really take to make a big bruise. Kayla came home one day with little hickeys all over her arm because she thought it was cool to make the bruises so easily. Not so cool when mom saw them and freaked for a few seconds:-)

Hello,

I'm very new to this. My daughter has just turned 4. She was diagnosed in October with a count of 13K. Since then count count has risen to 18K. She has been to a couple of friends houses on her own. I have something that I print off the computer each time she goes somewhere on her own that I give to the parent explaining what ITP is very briefly and what precautions need to be taken. At least that way I feel happy that the parent definately knows and hopefully wont forget as it is all written down for them. I'm not sure whether my restrictions are correct, but I say, no trampolining with another child, bikes and scooters only with a helmet. Make sure she is supervised on climbing frames. Try to avoid anything dangerous where head injuries are likely and if she hits her head contact me straight away.

I think we've all got this problem, no matter what the age of the child. I know that I went through a similar issue again when my son started at secondary school last September. Things we do:

a) He always wears a medical ID band
b) I've taught him how to deal with minor nosebleeds, cuts and grazes, himself - elevate, pressure, cold etc
c) I've explained to him the circumstances where he would need to get extra help - an adult or the hospital. He carries a mobile phone with him when he is out with friends to allow him to do this easily.
d) I've encouraged him to be open about ITP with new friends and most of them know about it now
e) Where he goes to regular clubs, I ask him to tell the leaders himself if his count is particularly low - sub-20K

We don't want ITP (or our worries) to interfere with him growing up the same as anyone else, so I have tried to be as minimal as possible about the changes he needs to make to his life because of it. I am hoping that the above precautions work though!!!!! Good luck.

Ali