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New with questions

Discussion in 'Introductions' started by mcmommy4, May 2, 2011.

  1. mcmommy4

    mcmommy4 New Member

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    Hello Everyone,
    Just a quick back ground on my son. He is two and now has been given diabetes by having all of his pancreas removed. He was born with hyperinsulinism where his pancreas what producing to much insulin all the time. It was a struggle to keep his sugars out of the teen?s and twenties. Even with continuous glucose infusion he would still go low several time a day. We had his first surgery where they took 60% of his pancreas and it did not help, the they too 95 and he still had all the dangerous lows, then 99.5 and he still was going low every day all the time and it was getting worse, so the decision was made to go back in and take it all and part of the intestine that it also had attach itself too. It had grown back from the size of about ? a raison to the the size of a thumb in three months. That was done this past Tuesday. IT is sad to say we traded one bad disease for another, but the doctors say that diabetes is safer and easer to manage then all they low sugars. We are not risking the brain damage any more. Don?t get me wrong they said diabetes is also dangerous, but I guess it the lesser of two evils. He is a little delayed in some areas from being hypoglycemic so often.
    We are trying to find right now the amounts of insulin. Right now he is a little brittle. His swings are drastic. 500?s to 40?s. He has other things right now that are making things a little more complicated. The stress of surgery, the fever he spiked today of 104 and the fact that he is also TPN dependent at the time. At home he also get g tube feeds, but his mane nutrition is TPN 24 hours a day.
    So here are my questions?.
    Any one out there that has had a total pancreatectamy?
    Any one on TPN or Gtube feeds?
    Will the swings in blood sugar get better?
    Any tips or advice would be great.
    Thanks
     
  2. Kaylas mom

    Kaylas mom Approved members

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    Welcome, I don't have any experience with most of this, but I do have experience with TPN and tube feedings. My youngest was on home TPN from 6 months to 10 months of age and tube fed before that and a little after. Nick is my only one without D but during that time I know his BG levels were all over the place due to the continous TPN, They would go as high at upper 300s and once when his central line broke, in the time it took to get from our city to the Childrens hospital in another city his BG level was 24 and he was in bad shape. Hugs!
     
  3. JeremysDad

    JeremysDad Approved members

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    Good morning and welcome to our forum. While I am also unable to offer you specific advice, I can tell you that there are many compassionate people in this forum who can answer diabetes-related questions and provide advice, based on their own experiences.

    I would imagine that, in your case, if your son is not producing insulin, you will have better control of his numbers since carbs and insulin can now be externally regulated. Hopefully he can be put on an insulin pump which will make his life so much easier.

    The best of luck to you. Please come back often and we'll help where we can.
     
  4. StillMamamia

    StillMamamia Approved members

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    Hi and welcome.:cwds:

    I believe there is one member here whose child was born without a pancreas. A different situation as yours, but maybe she has some insight for you. I hope she chimes in. I'm sorry, I forgot her username. I think she's in Australia, maybe?
     
  5. L101418

    L101418 Approved members

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    CookieMonster. Post #92 in Introductions.
    His blog: http://twoorgansshort.blogspot.com/
     
  6. redcurls3

    redcurls3 Approved members

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    Also if you are on FaceBook, there is a group for children with Hyperinsulinism (although you may already know that, are you Ryan's mom?). They may have some more information on kids like yours. The mom of the daughter born without a pancreas is Karina Ann (I can't remember her username on here). Hopefully you can find some support. Praying for you and your LO.
     
  7. mcmommy4

    mcmommy4 New Member

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    Thank so much for the welcome, and yes I am Ryan's mommy. And I am a member or the hyperinsulin groups on Facebook, almost all the moms are only dealing with the lows and I only know onw othe mommy with a baby that had all there pancreas removed. Alot of times with hyperinsulinism even 2% of a pancreas can cause you to go low all the time.
    Do I know who you are on facebook?
    Thanks again for the warm welcom and I am sure I will be back soon with more questions.
     
  8. redcurls3

    redcurls3 Approved members

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    I'm Christy Byrd Vacchio on FB. I got connected with Angela through a mutual group of interest (Newborn Blood Sugar Testing , I think) and have just followed along with the CHI groups. It's odd, even though they are opposite diseases, some of the same genes are affected. I've been researching a lot and the KCNJ11 (or Kir6.2) gene is the same gene that can cause either CHI or Neonatal Diabetes, just depends on the mutation. I know there are other genes that can cause both, but just thought it was interesting and both are very rare diseases. I think I read CHI is about 1 in every 25-50,000 births and ND is about 1 in every 100-400,000 live births. Obviously there is still a lot of research to be done and it seems that CHI is much harder to deal with. I hope you get the support you need. I know it's out there. This forum is excellent for support.
     
  9. Cookie Monster

    Cookie Monster Approved members

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    Wow, this must be a terrible time for you. I can't imagine having had to deal with one serious disease for so long then to be faced with another. I only hope we can help a little.

    Not quite. My now 3yo son was born without a pancreas so many of the issues you are facing now will be similar to ours. I'm the guy that Laura mentioned above (Thanks Laura!). The other mother, Karina, has a 2 year old daughter without a pancreas. Her name here is SarahsMum or something like that. Anyway, I can put you in touch if you'd like. I am in New Zealand, she is in Australia. Where are you? We know of a couple of other kids without pancreases elsewhere too.

    My son is fed through a tube in his stomach. It works really well and doesn't seem to bother him at all. It's good to have a way of getting carbs into him when we need to.

    Yes. Looking back his swings were huge. They are much more controlled now. They are not brilliant but he's come a long way. The pump has worked for us. It might be something you want to discuss with your doctors.

    Let me know if there are any questions. I really hope we can help in some way.
     
  10. mcmommy4

    mcmommy4 New Member

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    May 2, 2011
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    Yes I would love to get in touch with anyone living with out there pancreas. That would be great! Not great that they don't have a pancreas just nice to meet some in a simmilar boat. I am in USA california.
    Ryan has no pancreas or gall bladder, He intestines are also are a little different making it harder to absorb his enzymes making it hard for him to abrosorb his feeds and that is one reason he is on TPN. He is really tiny for his age also. (I was reading some of your blog)
    Thanks
    Carolyn
     
  11. Cookie Monster

    Cookie Monster Approved members

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    Hi Carolyn,
    I've PM'd you with some details.
     
  12. Flutterby

    Flutterby Approved members

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    Welcome, sorry you had to go through all that with your son. I know that there was a family or two that had children with no pancreas', they dind't have them removed, they were born without them.

    Right now you are seeing major swings for many reasons one of them being he's young. As he growns things will get easier (until the teen years).. I've noticed this with my own daughter. We still have swings and highs and lows, but they aren't like they were when she was 2,3,4,5..
     
  13. MamaC

    MamaC Approved members

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    Welcome to CWD.
     

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