4 year old diagnosed with ITP on 3rd ... - ITP Support Assoc...

ITP Support Association

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4 year old diagnosed with ITP on 3rd December with a level of 4 only gone up another 3 in 2 weeks ?

Sarabeth11 profile image
3 Replies

I am so worried as he is so pale and tired and very grumpy indeed ! He has been off nursery but now I am worried about after Christmas and what happens next

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Sarabeth11
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sailor profile image
sailor

Hi Sarahbeth11. So distressing to see a youngster obviously distressed by ITP. The count whilst being important is not everything. Fortunately, it is not uncommon for youngsters to go into remission on their own after a period, often up to 6 months after diagnosis. So I would certainly look on the positive and hope that will happen to your 3 year old son. In the mean time, I am sure your medical advisers will keep a close eye on him. If there is any sign of spontaneous bleeding do not hesitate to call and go to the hospital but bruising, tiredness and the petechiae is common with all itp sufferers what ever age.

One of the American itp specialists has always said this condition is worse for the parents than it is for the child. I am sure that is right. Whilst they suffer, the parents suffer for them!!!

In respect of nursery, make sure they are aware of the condition without frightening them. The itp support association has pamphlets which will explain the condition to the school and how to treat a sufferer.

As to what happens next, that will depend on how your son's condition develops. Hopefully, the count will improve, but I am afraid you will have to be guided by your own sons condition and the medical advisers. If you have any doubts about the advice, there are some very good pediatric itp specialists hematologists around the country which you will be able to find on the itp support association web site under itp forum for the centers of excellence.

Have a good Christmas and act normally, you cannot wrap a 3 year old up in cotton wool all of the time, just be careful not to place him in a position that he could injure himself.

Sarabeth11 profile image
Sarabeth11 in reply to sailor

Thank you Sailor I know your right have read everything now ! But always nice to hear I am not on my own worrying will see how he gets on over Christmas going reguarly to hospital, and decide about nursery in the New Year.

Very best wishes for chrismas to you too and thankyou

My son had a count of 2000 for over 2 weeks and he fatigued and bruised.Our team dont treat unless there is active bleeding which in the end there was.He has had itp now for 18 months and is considered chronic. I also have had itp for 16 years.Its so hard not to fret over them but is best to try and keep life as normal as possible for them my son went to nursery and staff were aware of everything.Our body is an amazing thing and it may surprise you and bounce back pretty quickly Best of luck and hope christmas was a nice and uneventful ( healthwise) for you

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