My son is 20 months old and was diagn... - ITP Support Assoc...

ITP Support Association

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My son is 20 months old and was diagnosed with itp a few weeks before his first birthday. He's had ivig, whinrow(not sure if the spelling),

Kdur30 profile image
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He's been on prednisilone since September, and just recently a rituxin infusion. He also had a bone marrow biopsy before starting the steroids. He's on a low dosage, only 2.5ml a day. We are trying to wean him off of them now. Problem is, his platelets usually stay between 10 and 12. The rituxin put them up to 36, but the next week they were down to 11. He hasn't taken well to any of the other treatments either. He hasn't had any nose bleeds, does have bruises, but I've seen worse on here actually. You would honestly think nothing is wrong with him until you look at his blood!

Anyway, does anyone have any suggestions or words of encouragement? It's so hard watching him go through all this at such a young age, and for nothing to be working. I do think the steroids are maintaining his platelets, but not raising them.

We live in the states and are looking in to a third opinion on this so he gets the best treatment he can get! But I'd love why advice you all have! Thank you

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Lynnek profile image
Lynnek

I'm sorry your little one is poorly. According to the ITP website, children usually recover with little intervention. There are many people on here who have children with ITP who will be able to give you good advice and strength to move forward. Your never alone - stay strong xx

We dont treat until a bleed occurs and have spent weeks at 2000. It can also depend on the size and age of the platelets. You can for instance plug a hole with 2 thumbs or 6 pinkies so its not always about the numbers. We only treat symptoms.The rituxin can take up to 12 weeks to kick in if its going to work. Its also worth noting that your" stable" range maybe 150,000 it maybe 50,000 or 10,000 but the body will figure it out. Hang in there more often than not children grow out of this.

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