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Congenital Hyperinsulinism

  1. lrohner profile image85
    lrohnerposted 7 years ago

    Does anyone have any experience with Congenital Hyperinsulinism?

  2. 0
    wordscribe41posted 7 years ago

    Is that a theory about your grandaughter?  Oh, I hope everyting is alright.  I posted on your Hubber Babies thread just minutes ago.  Thinking of you all right now.

    1. lrohner profile image85
      lrohnerposted 7 years ago in reply to this

      It was a theory earlier, but it was confirmed by the doctors a few hours ago. She's got KATP Hyperinsulinism. My daughter and her hubby now have to go through genetic testing, and the baby has to under lots of testing to figure out whether it's focal or diffused. Either way, the baby needs surgery pretty quickly.

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        wordscribe41posted 7 years ago in reply to this

        OOOOHHHH, I am so sorry to hear about what's going on.  From the bottom of my heart, I feel for all of you.  What does KAPT stand for?  What will they do in surgery?  Something with the islets of langerhans/pancreas?  You are all heavily on my mind.  Thanks for the update.  Please let us know how she's doing.  Wish I could help from here...

        1. lrohner profile image85
          lrohnerposted 7 years ago in reply to this

          Thanks, Wordscribe. Just wish I knew someone who has had experience with this. Evidently, it's pretty rare. Most hospitals only see 1 or 2 cases a year and there are only 4 hospitals in the US that have centers that specialize in this. My daughter is at one of the best Connecticut hospitals, and they only see 1 case about every 3 years, and they said Cara's case is the worst one they've ever seen.

          Basically, bad mix of genes from Mummy and Daddy have made Cara's pancreas create too much insulin resulting in severe hypoglycemia. The poor kid is on a feeding tube with IV's and tubes everywhere. They can't get her blood sugars above 26 even with constant pumping of meds and glucose into her. This is all pretty ironic, as my other daughter is a Type I Diabetic where her pancreas doesn't create any insulin.

          Thanks for the thoughts and the support.

          1. rmcrayne profile image95
            rmcrayneposted 7 years ago in reply to this

            Irohner sorry to hear about your granddaughter's critical medical situation.  Any kind of insulin or thyroid issues in newborns are extremely serious.  I don't doubt you that there are only 4 hospitals specializing in this, but I'm sure there are many more that have dealt with it.  I'm guessing with the team pursuing genetics testing, that in a manner of thinking, the insulin issue is a symptom and not the primary diagnosis. 

            I haven't worked daily or weekly in the NICU in 7 years, but our NICU at Wilford Hall, Lackland Air Force Base deals with very complex issues routinely.  They have multiple neonatologists and a fellowship program as well as a large pediatric residency program.  I guess my point is, there is a fair amount of "corporate knowledge" out there.  I'm sure Cara's team has spoken with multple specialists. 

            I retired in Dec and my books and stuff are still stacked in boxes.  Weird, one of the few things I actually know the location of is my NICU folder because I wrote a Dev Care NICU hub this week!  So I was able to find the citation on my favorite reference.  It is a great book for families:  Newborn Intensive Care:  WHat Every Parent Needs to Know by Jeanette Zaichkin.  It's very affordable, but the new addition is on pre-order at Amazon, projected for release Oct 09.  I think this is the first revision of her 1996 book.  One of the greatest things about the book is it explains the lab, blood chemistry values etc for us non-MD, non-RN folks. I would highly recommend it to help your family navigate this journey.   

            Wishing the best, Rose Mary