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ITP anyone with any experience?

(4 Posts)
Barbie1 Tue 14-Nov-17 21:32:48

After a stressful few days where my dd7 was being tested for leukemia we finally got a diagnosis of IPT.

Her body is covered in the purple bruising, she has the pin prick blood spots and is whiter than white.

Her platlets are 4 and she will have to have repeat bloods to make sure they are rising. For now we are allowed home.

I only have the Bristol sheet of info given from the hospital. Basically wrap her in cotton wool and keep an eye for bleeding.

If you have any experience would you be so kind to share?

Thank you

moosemama Thu 16-Nov-17 14:37:26

My son was suspected to have ITP earlier this year. In his case it turned out not to be and he is still under investigation regarding his clotting issues, so I understand how worrying it is.

I don't have any experiences to share, but wondered if you know about or have contacted the [[ ITP Association]]. It might be worth a try and they appear to have a members section where you can get support.

oldbirdy Thu 16-Nov-17 19:33:32

My DS developed itp in early October. His count was zero and he was bleeding from mouth and nose so he had immunoglobulin therapy which brought his count up.

He is now under review at our local children's hospital. The protocol seems to be blood tests every 5 weeks or so until the picture is clearer. The specialists are insanely relaxed and given the alternative diagnoses on admission (meningitis or leukemia) ITP is the least worst option!

The consultant said that they tend to treat on symptoms rather than blood count. They treat if there us severe or prolonged spontaneous bleeding. (The treatment made DS feel much worse than the condition itself!). The risks are for internal bleeding, but they are very rare after the first week after diagnosis.

The key info I have given school is; call me if there is bleeding from nose or mouth; if he has a heavy fall or bumps his head; if he has an accident for which a paramedic is called, they need to know he has low platelets; he must not be given aspirin or ibuprofen; and no contact sports (your dd's count is lower, so maybe no sports at all?)

Once your DD is under review and you get regular updates on the 'direction of travel" of her platelets it will feel a bit better.

Barbie1 Fri 17-Nov-17 19:25:43

Thank you both for taking the time to answer.

Dd can have no more bloods taken as she is too bruised and her veins keep collapsing. We have been given 5 days off at home to relax and let her heal before heading back to hospital on Tuesday.

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