Active child and ITP

[whodon]

Hello. I am new on here. It is great to find a place where we can learn from other peoples experiences/stories.

My 3 year old son was diagnosed with ITP a few months back. His levels have increased (the last count was about 30) & we are aware that his illness is going to take sometime to HOPEFULLY heal itself (fingers crossed). The challenge we face is that our child is not capable of understanding that he needs to take it slow & steady. We have tried to make our home as safe as possible, removed items that could cause danger, changed our family activities (so we purposely don't go near a playground), plus we have taken him out of daycare.

How do families with a small child that have ITP cope? It is a full time job of patience and is just extremely nerve racking for us parents, plus our other child is indirectly effected as we as parents are constantly stressed out and worried. The Haemo's tell you that you have to live with it, which is true, but I don't think anyone really understands until they experience it 1st hand. If anyone has any tips on how they live a "stress free as possible life" with a small child with ITP that would be appreciated!!

Thanks and enjoy the day.

[Mashirova]

Hi I know how stressful it is. My son was 3 and half when we found out he has ITP. I did go to the park with him and constantly watch him play. Its not possible to keep them home especcially in the summer. Also you need just tell in day care that what your child has and they will watch him that's their responsibility too. My son now almost 8 yrs old. The school knows his problem. I ask for a para for him in school who watch him. He participate in gym. We check his blood work every week and he gets N-plate weekly. If his platelets bellow 40 I ask the school that my son not to participate in basketball game. But otherwise he goes to the park and play as others

I hope it help you. And I wish they will become healthy soon.

[Kyriak51]

Hi whodon, does your son have immune or non immune TIP, what treatment is he receiving? A platelet count of 30k is very low for an active child who can't understand the risk of serious injurie, I'm sure you can't take your eyes off him for an instant. As you know there is no cure at this time only management of a chronic disease, there are examples of remission for years on this site after treatment and children tend to do better than adults. Learn as much as you can about ITP so you can advocate for your son, check out mayoclinic.org for treatment options. kyriak51