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4 year old son platelets 7,000 UK won't treat!?

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9 years 1 week ago #55772 by sarahjane369
4 year old son platelets 7,000 UK won't treat!? was created by sarahjane369
My little boy is 4.5 years old. Got diagnosed with ITP 2 months ago with levels of 2,000 then this week it's 7,000. In the U.K. Hospitals won't treat child ITP until 6-12 month post diagnosis or excessive bleeding. Obviously I am greatful he hasn't bled out yet but the bruising, rash, joint pain, concentration level and just the whole thing is sending us all crazy! Can't even think that we might be in this same situation for that much longer. I feel like I'm just waiting for him to have a bad bleed for them to take notice.
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9 years 1 week ago #55773 by Rob16
Replied by Rob16 on topic 4 year old son platelets 7,000 UK won't treat!?
The reason that the doctors are not treating is that the risk of not treating is less than the risk of treating. ALL of the treatments currently known have risks of serious side effects. And, the risk of bleeding out is very slight. More people die from the side effects of ITP treatment than from bleeding out! The doctors are doing the right thing.
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9 years 1 week ago #55776 by alisonp
Replied by alisonp on topic 4 year old son platelets 7,000 UK won't treat!?
I'd second that. Don't spend your time waiting for something bad to happen either because it probably never will. Try and continue with your lives as normally as you can.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 1 week ago #55778 by mrsb04
Replied by mrsb04 on topic 4 year old son platelets 7,000 UK won't treat!?
I agree, it is worrying but best avoiding drugs if possible
  • Mommymann1
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  • My name is Shawna. my husband and I are parents of a beautiful little girl named Analee. Analee was diagnosed with ITP last year, she was only 1 at the time. It was one of the most frightening moments of my life. Shes doing fine.
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8 years 6 months ago #58421 by Mommymann1
Replied by Mommymann1 on topic 4 year old son platelets 7,000 UK won't treat!?
I understand your frustration, I was the same way a few months ago. Last year my 1 year old daughter (now 2) was diagnosed with ITP her platelets were at 3. A few months later they tested again and they had gone from 77 to 10 and refused to do anything and said let's just hope they don't go down again but we will cross that bridge when the time comes. And I just wanted to scream at them what when she's non-stop bleeding. is it going to take something like that for them to take this seriously? I now live in constant fear praying it doesn't.
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8 years 6 months ago #58423 by sarahjane369
Replied by sarahjane369 on topic 4 year old son platelets 7,000 UK won't treat!?
Hi, so 5 months on from this post we are currently 8 months into our ITP journey. They have said it is unlikely now that his bloods will recover without help. Current bloods are at 7 after rising to 10, dropping back down again! He's had a few admissions since this post, last one resulting in a CT scan for suspected brain bleed but came back clear thank god! We have another consultant and blood test next week hoping to discuss bone marrow biopsy and then hopefully treatment at the 12 month mark. I've learnt not to wrap him in cotton wool and try to be as normal as possible. I'd like to say it doesn't affect his day to day life but it really does with regards to school. He's still banned from outside yard play and isn't allowed to participate in PE obviously. We are living by monthly bloods at the moment and wishing for remission at every results!
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8 years 6 months ago #58424 by sarahjane369
Replied by sarahjane369 on topic 4 year old son platelets 7,000 UK won't treat!?
How many months has your daughter had low platelets for? It's such a hard journey seeing your child go through something that you cannot control. Hold tight and keep strong x
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