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T&P needed for my nephew

rsrn02rsrn02
in Parenting after 35

My nephew recently had an ear infection and a cold. He took his antibiotic then Monday broke out in pinpoint rash that evolved into what looked like a million bruises 

He has something called idiopathic thrombocytopenia purpura.  Basically his immune system is attacking his platelets.  Platelets are needed for blood clotting.

Normally ITP resolves on its own with no treatment but his platelet level was so low he had to be admitted to the hospital.  They gave him a dose of immunoglobulin on Tuesday. Wed his numbers went down from 9k to 5k. So they gave him another dose. It takes 12 hours to give. Last night he was throwing up and ran a fever. So they gave him Tylenol and something for the nausea in his IV.

Hes doing good this morning happy smiling and eating Cheerios

Please send T&P my sister. My nephew and the rest of the family their way

This is the sister whose other son passed away 4 yrs ago @ 14 months old in his sleep at home in his crib from unknown reasons.

My whole family is freaking out. My dad called me crying last night that he doesn't want to lose another grandson. (I'm a RN so the family calls me whenever something medical happens)

Sorry this was so long. My sister and her husband don't need this.  

Im hoping if he has a good day today and his numbers go up that he'll get to go home.

Thanks 

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Re: T&P needed for my nephew

  • rsrn02rsrn02
    Oh and my nephew is just 10 wks younger than my DS. Which would make him 18 months I think. 
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  • gimmietimmiesgimmietimmies member

    T & P's headed your way, I hope he gets better. FWIW, IVIG can make you nauseous and run a fever (and loose stools too). L gets IVIG once a month, and he actually feels worse the day after.

    ETA: Has he, or did his brother ever get tested for a metabolics disorder? So sorry that your family is going through this, especially after the loss.

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  • racampbell1racampbell1
    I'm so sorry to hear this, thoughts and prayers coming for your family.  Hope you get some good news about him soon.  Hugs.
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  • steverstever member
    I'm so sorry. T&P for your sister.

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  • rsrn02rsrn02
    imagegimmietimmies:

    T & P's headed your way, I hope he gets better. FWIW, IVIG can make you nauseous and run a fever (and loose stools too). L gets IVIG once a month, and he actually feels worse the day after.

    ETA: Has he, or did his brother ever get tested for a metabolics disorder? So sorry that your family is going through this, especially after the loss.

     He's been tested in the past for many things and so has his sister since their brother died of unknown causes.

     

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  • gimmietimmiesgimmietimmies member
    Understood. It's the proverbial needle in the haystack. I've lost count how many things L has been tested for, and come up negative. We're on to CPT Type II right now. DNA and tissue testing was sent to England in Nov, still waiting on results. I thought of it because in infants and toddlers it mimics SIDS, but also presents with varied symptoms, including auto immune. I hope they don't have to wait years to find what's the root cause of this (it's been 14 years here). GL
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  • PeskyPesky member
    Lots of tpj!  Hope he is on the mend and better soon.


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  • newbee36newbee36 member
    T&P to your sister's family! It is terrible that after a loss they are going through this. This time I hope your nephew gets well.
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  • jigglyjelloojigglyjelloo member
    Thinking of your family and wishing your nephew a speedy recovery!
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  • mwdmwd member
    My company makes a test for typing platelet antibodies.  Yes, this is really scary.  Please encourage your sister's family to get platelet genotyping done. It can be done through The Blood Center in SW WI, as well a several other locations through the U.S..  My company was affiliated with them, but not any longer.  I know the staff pretty well there, and they have diagnosed some pretty crazy blood disorders.  Good Luck! 
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  • rsrn02rsrn02

    Ok we are hoping he goes home today.  He got a different med last night and they have to monitor him for 8 hrs after the injection.

    So hopefully by lunch time he will get to go home.

    Sadly, dh, ds, and now I am sick with cough, cold, fever.   So no driving down to visit.  They live 4 hours away.  Or as my bil calls it "the sister swoop". We (my other sister and I). Drive down, go clean her house, make dinner, do pick ups and drop offs etc... So that all they have to do is concentrate on the kid in the hospital  

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  • StrunellaStrunella member
    I'm so glad he is doing better and can go home!  Poor little guy.  And hope you and your family feel better!
     
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  • Cheekers2010Cheekers2010 member
    So glad to hear he's doing better.  That is so scary.
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  • rsrn02rsrn02

    Yay!  He got to go home today.  Follow up ith hematology and pedi next wk with lab draws. 

    I will mention to my sister to get genotyping done for all of them thanks 

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  • JenniferTCUJenniferTCU member
    imagersrn02:

    My nephew recently had an ear infection and a cold. He took his antibiotic then Monday broke out in pinpoint rash that evolved into what looked like a million bruises...

    I am so very sorry. 

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