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Life-limiting illness

My baby may need bone marrow biopsy exoeriences needed?

7 replies

summerdreams · 08/08/2015 19:49

Posted in childs health but think might be better here, my 12 month old ds was diagnosed with severe neutropenia at 3 months allthough the nicu told me bloods were odd at birth. From 9 months untill now he's had numerous infections his app with his heamatology at gosh went very quick yesterday so didnt get to ask many questions as they were rushing to get his bloods to the lab before it closed dr was hand delivering them, they're testing him for wiskott-aldrich syndrome if negative will receive a call from the admittions team to bring him in for a bone marrow biopsy terrified he'll be put to sleep and in for 24 hours he has fevers everyday at the minute. Im so scared for him and feel so alone as alk this is so rare not much info online just wanted to talk to some anyone really any advise or experience would be nice?

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Duggee · 08/08/2015 19:53

Hey, just thought I'd let you know there's a Facebook group called neutropenia moms and it has mums from all over the word with a wealth of knowledge.

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summerdreams · 08/08/2015 19:54

Thankyou gonna have a look

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Duggee · 08/08/2015 19:55

From what I've read its a simple procedure. They do give them. General anesthetic and will be in for a day. I know it's worrying but itscs minor op. Your baby will be fine. :-)

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Duggee · 08/08/2015 19:56

I can add you if you on me your fb name.

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summerdreams · 08/08/2015 20:02

Deleted facebook years ago but gonna make an account cos im really in need of support

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summerdreams · 08/08/2015 20:03

Literally waiting for code to come through at the moment

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Duggee · 08/08/2015 20:49

Ok. They usually message you before you're added to make sure you're genuine. Check your other folder of you can't see it.

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