ITP in children and behavior

[JJMcLaren]

My daughter has had ITP since she was 2 yo. She is now 6yo and we have been dealing with awful moodiness and emotional outburst when her plt count is <50. I am not sure if anyone else has noticed this in their children but the doctors and specialists keep saying it has nothing to do with ITP. I am her mother and with her all the time and she never has these issues without a lot of bruising. I can almost guess where her plt are by her attitude. Anyone have any recommendations or information?

[mborrelli]

The doctors are so stupid as they never managed a son/daughter with ITP.

I can confirm that all parents with Itp children has the same issue.

My daughter is six and she had itp when 3. From that time, when platelets are low the child management is so complicated in particular for school homeworking.

[ITPmummy]

I would agree with you to some extent. Although not sure with doctors being stupid comment.

My son was diagnosed 7 weeks ago. His count has gone up and down and I can tell when it's below 50 too as he wakes in the night. Can't settle and is generally quite teary and grumpy. He can't talk yet so he can not tell me how he is feeling but my DH and I both notice these things before the bruising appears.

[JJMcLaren]

Well I am glad to know that I am not alone. Addi has a rough time in school and at home with defiance and emotional outburst when her plt are low but her doctors said it was not connected and had me take her to a developmental specialist. The developmental specialist says she is perfectly appropriate with her plt normal as they were at the time of the assessment. I explained how she acts when they are low and he said that can be connected to the ITP you never know how they are feeling and what is going on other than the ITP. I can say she has gotten a lot better with age as far as sometimes communicating better, we had way more bad days when she was younger. Does anyone know if there are studies about ITP and behavior? I would love to have her in on that the doctors would be amazed at the difference...

[grasshopper2000 in reply to JJMcLaren]

My 7 year old daughter has had ITP for at least 5 years. Her count has never been above 30. There have been the odd days or weeks when she is not tired and her work at school and her reading are very good. However, most the time she is really tired and she has lots of melt downs and she also really struggles with reading and all her school work. It's like she can't focus. Occasionally when she's not tired she can read chapter books very easily, but most the time she struggles with even the easiest of words. The same with maths, when she is not tired she can add two digit numbers in her head, other times she will struggle to add 1 to a number.

[pranava17]

Yes. I completely agree with everybody above. I have a brother with ITP and I seen this kind of behavior in him too since my childhood. Me and my parents have found it very difficult to handle him. We attributed the change to intake of steroids. Though we are not sure about it. Then I slowly reduced the dose of steroids. Now since last 10 years, he does not take steroids and now slowly he learning to control his outbursts. He is not completely successful, but he tries. He is 21 now and he had ITP since he was a 2 year old baby. All my advice for you is, do not show your reactions that you notice your kid. She might end up learning to control her anger. and may be lesser pampering might be helpful for the kid, though it might be difficult for the parent.