Community› The Bump Month Clubs› July 2015 Moms
July 2015 Moms
New Discussion

Krabbes disease

Mel0428Mel0428 member
in July 2015 Moms
Ftm my baby is 3weeks old we were just informed that she tested positive for krabbes disease during her newborn screening and had to send off blood to confirm.. Any mommy's have had false positives for this? Are they common? I was looking it up and it says there is no treatment... Needing something positive I'm a mess.
Report Reply to Post

Re: Krabbes disease

  • CkorinesCkorines member
    Praying for you. Stay strong.
    Report Reply
  • Loading the player...
  • 2babes3angels2babes3angels member
    I have no insight on the matter, but wanted to say I am praying for you and your little one.
    Report Reply
  • bwarren1210bwarren1210 member
    I'm so sorry that you are going trough this, I can't imagine the heartbreak you must be feeling. I don't have any experience with this disease but I had my share of scares with my baby when I was pregnant. Everything turned out to be completely normal and she is perfectly healthy. There is still hope that everything will turn out just fine for you. I will be praying for you and your sweet baby, may God bless your family during this hard time.
    Report Reply
  • knowmeinadifferentlightknowmeinadifferentlight member
    Although I am not personally familiar, I found this info, and hopefully it will help ease your mind:

    " There are varying forms of Krabbe disease and it is important that a diagnosis is made as soon as possible to ensure that appropriate treatment is administered. The vast majority of infants with a positive screen for Krabbe either do not have the most severe form of the disease, or they are carriers. "
    The website I got the info from: https://www.huntershope.org/site/PageServer?pagename=unbs_krabbe_newborn_screening

    Best wishes to you and your family. My t&ps are with you.
    Report Reply
  • hankhunterhankhunter member
    Praying for you sweet mom.
    Report Reply
  • PurpleBookmarkPurpleBookmark member
    I'm really sorry you're going through this, I hope that you get more information soon. Thoughts and prayers for you.
    Report Reply
  • MrsTiger123MrsTiger123 member
    I hope all turns out well.  I found the same website as above poster: https://www.huntershope.org/site/PageServer?pagename=unbs_krabbe_newborn_screening
    It mentions most positives are just carriers.  It also says the screening is very sensitive so there are false positives.  Prayers to you.
    My first son as a genetic disorder caught via the PKU/Newborn Screening test.  We had to have a hematologist confirm it when he was about 3 months old.   He was a true positive.  It turns out I am a carrier of a genetic disorder and had no idea. 

    Report Reply
  • AmyPrieto14AmyPrieto14 member
    Praying for little one & family & you. I don't know much abt this but I'm hoping & praying the best for you & baby. *hugs*
    Report Reply
Sign In or Register to comment.
Choose Another Board
Search Boards
"
"