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There is hope!

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12 years 5 months ago #36094 by ktaruba
There is hope! was created by ktaruba
My 15 year old is 9 months into this journey. His lowest was 48k and he hung around the 55k range for 7 months. We have not had any treatment. The dr wanted to try steroids to get him back to his life of sports. We ultimately decided against it. We were going for the monthly cbc and was at 54k in May, 69k in June, 81k in July, and yesterday 94k! Unbelievable! Time will tell what is going on.

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12 years 4 months ago #36111 by Jacchab
Replied by Jacchab on topic There is hope!
That increase in counts is fantastic! You must be awfully happy :)
What sort of sports does your son do?

Jac

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12 years 4 months ago #36113 by ktaruba
Replied by ktaruba on topic There is hope!
He is the varsity starting goaltender for his high school.

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12 years 4 months ago - 12 years 4 months ago #36114 by Jacchab
Replied by Jacchab on topic There is hope!
[strike]?? Not quite sure what that means[/strike]

Apologies, just googled it - Hockey?

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12 years 4 months ago #36115 by ktaruba
Replied by ktaruba on topic There is hope!
Oops! Sorry! Should have said hockey! Could have been soccer! ha ha! Happy none the less!

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12 years 4 months ago #36116 by ktaruba
Replied by ktaruba on topic There is hope!
Jacchab what is your itp story?

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12 years 4 months ago #36118 by Jacchab
Replied by Jacchab on topic There is hope!

ktaruba wrote: Jacchab what is your itp story?


Live in Australia. Mother of an (nearly) 11 year old girl. Diagnosed in Feb of this yr with a count of 11. Roller coaster platelet count - highest of 159 with IVIG. Responds very well (platelet wise) to prednisolone, but gets all the awful side effects. Got a new Haemotologist last week that is on the same page as us, and wants her off the pred to at least see her base level. Few issues with Drs 'fighting' over the case, as she also has another rare disease (CGD - 1:250,000).

On the whole, a very happy and active girl (except for the downers of pred)

Jac

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You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
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IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.