ITP parent with ITP child

Hi, any one out there with ITP, whether active or dormant, who also has a child with ITP?

I was diagnosed 26 years ago, tho following splenectomy, have remained dormant for 25 years.

3 weeks ago, my 12yo son complained of 'freckles' on his foot. Looking at these, spotting multiple bruises elsewhere (luckily he'd just showered and wore only boxers!), with a horrible feeling of deja vu, asked him whether he'd had any nosebleeds recently. The answer was yes, but as they had happened during the night, he just dealt with them then 'forgot' by morning. Kids!

The following day, a visit to the GP and blood taken, resulted in a count of 30. Over the course of 2 weeks this had gone down to 3, but as the nosebleeds have stopped, the hospital are taking a wait and see approach.

Considering when I had a count of 21, I was admitted, bone marrow aspirated, put on high dose steroids, and signed off work because of risk of haemorrhage, I was understandably freaking out at their lack of 'doing' anything for my son.

Having spent every spare moment since reading all the latest information available, I understand more about the juvenile aspect of ITP and am a little reassured that this approach is normal. Oh how times have changed.

The only thing is, my 12yo has already hit puberty, and at 6' 3&1/2" (taller than most adults) is the juvenile approach really the best one?

Hmmmm

2 Replies

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  • I've was diagnosed wit ITP in early 1990s, started on Nplate since 2010 and am doing well. Have you been seen by a hematologist? Check out mayoclinic.org for great info. kyriak51:)

  • Hello..my son is 10 n has ITP since he was 1...usually wait n see approach works well and transfusion in case of trauma only.as ur son is strong and growing I think improve his diet n with a little care he can manage life..best wishes to ur son.its a lifetime thing sadly.

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