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Neonatal Diabetes

Discussion in 'Parents of Children with Type 1' started by SarahsMum, Dec 30, 2008.

  1. SarahsMum

    SarahsMum Approved members

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    Hi

    I am Kat and my DD Sarah was born on the 28th November, she was 9 weeks early and weighed 735 grams so much smaller than expected.

    In the last few weeks she has been diagnosed with Neonatal Diabetes.

    Just wondering if anyone here has a child with this conditon?

    I have no idea what to expect and there is noone that I know or who have come across with this condition.

    Thanks in Advance

    Kat and Sarah
     
  2. Ellen

    Ellen Senior Member

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  3. zeb'smom

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    I don't really know anything useful but I second Ellen's recommendation to get your little (really little) one tested. I also want to wish you the best of luck in getting her all the care she needs. I thought it was hard dealing with an 18 month old with diabetes, I can't imagine how hard all this must be for you and your family. Take care.
     
  4. mmgirls

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    I "third" the vote for additional testing. My daughter was DX at 13months and I still had this testing done in the hopes that it was not the traditional type 1DX. I assume that the best course of action is going to be an insulin pump, probably one manufactured by "ANIMAS", and I would rconmend the "PING", this manufacturer has the smallest increment of insulin doseing at .025 units. My daughter has been on the pump since 18months and she is now 4.

    Is she in the hospital still?

    You will need to learn how to weigh food and drink and calculate carb counts. Based upon the carb count and her BG she will need a corresponding amount of insulin. I remember having to figure out a carb count for my breastfeeding of my daughter.

    A normal persons BG is between 80-140, but she will need to have a higher goal BG because the risks are too great if her bg were too low. Probably a range of 150-250.

    You can do this, yu have to for her, never feel bad for asking for help and accepting it. Look into your insurance coverage for in home nurseing care, this is a 24 hour desease and you have to sleep. Sleep, now. You have to have sleep to be able to learn and cope.

    Ask her endo to pass your name abd number to others that have had the same dx, hopefully you will find someone that can give you first hand experience with such a little one.

    take care, and I hope you can find the resources that you need.
     
  5. goochgirl

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    Welcome to our forum. Congratulations on the birth of your daughter! Please keep us updated on her progress.
     
  6. Nancy in VA

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    I am presuming you are talking about the condition that can be treated with pills. As far as I know, neonatal diabetes IS monogenic.

    My Dr at children's hospital in DC treats several patients with it. The Dr who identified this condition is in Chicago. I recommend you hook up with a Dr who has experience with this rare but very treatable form. I personally know a boy who is 7 and was diagnosed T1 at about 11 weeks and at age 6 was identified with neonatal / monogenic and he is completely off insulin and on pills


    If you PM me, I can get you contact info for that mothers
     
  7. mmgirls

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    From my understanding neonatal D is Type 1 that occurs in the womb and mongenic is a genetic mutations that does not allow the body to release the insulin that can be treated with sulfulinodes(SP), allowing the release of the insulin. TWO DIFFERENT DX, but the same presentation.
     
  8. Ellen

    Ellen Senior Member

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  9. SarahsMum

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    Hi

    Thanks for the info.

    Sarah is now almost 5 weeks old, tests have revealed that she is not producing insulin at all so is being treated with a insulin infusion.

    She has had this problem since birth.

    A ultrasound a few weeks ago was unable to locate her pancreas so at this stage we are unsure if she indeed has a pancreas or not, but in the meantime she is being treated as a diabetic.

    Edited to Add

    We are located in Australia she is at a childrens hospital but this condition is not seen very often, she edocronologist has only seen about 6 other newborns presenting the way that Sarah is.
     
  10. liasmommy2000

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    No advice, but (((HUGS))).
     
  11. Ellen

    Ellen Senior Member

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    There is at least one other mom on these boards who chats in the parents chat room from time to time with a baby who was born without a pancreas. Hopefully the two of you will find one another.
     
  12. Lauriejaf

    Lauriejaf Neonatal Diabetes Registry

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    Congratulations on the birth of your sweet baby girl. I am sorry about her diagnosis. I too had a baby girl diagnosed --with what we then thought was Type 1 -- when she was only one month old. She was on insulin for 6 1/2 years until we learned that she had a monogenic form of diabetes and was able to transition off insulin and onto pills. This particular form of monogenic diabetes leads to diagnosis of diabetes at 6 months of age or younger. Others have wisely referred you to JDRF's website which will help educate you on this You should definitely have your daughter tested and should contact Dr. Lou Philipson at the University of Chicago who helped us. His email address is l-philipson@uchicago.edu. Please let me know if I can help navigate you through this process.

    Laurie Jaffe
    Mother of Lilly
     
  13. frizzyrazzy

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    Hi and welcome!! I'm sorry you have to be here with such a little one. Obviously, if she doesn't have a pancreas than all the talk about the monogenetic diabetes is mute, but if they do indeed discover that she does have one, then absolutely get her tested for this rare kind of diabetes. If your doctor doesn't know about it then send him the research. It's important because if she does have monogenetic diabetes then she won't need insulin - she'll be able to be treated with a simple pill.

    But first thing is to find out if she does indeed have a pancreas.
     
  14. Cookie Monster

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    Hi Kat,

    Sorry I didn't notice your posts earlier. Been out enjoying the summer sun but back at work now so naturally... erm... back on the internet ;). I am the husband of Vicky who's thread you left a reply on.

    This must be a very difficult time for you. Our son was born without a pancreas but was nearly twice the weight of your wee one. I hope she is doing well.

    Our son is nearly 9 months now and continues to do well. He is well behind for his age and he hasn't quite caught up to the bottom of the growth charts yet but is getting there. It's been a hell of a year but the prospects are good and when he smiles and laughs (which he does a lot) it's all been worth it.

    We are just across the Tasman in the shaky isles so not too far from you. If you have any questions, please ask away. I might not have the answer but might be able to relate to your questions.

    All the best

    Alan
     
  15. SarahsMum

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    HI Alan

    Thanks for replying.

    We met with her Medical Team today where it was confirmed that Sarah has been born without a Pancreas. I believe that this is extremely rare, so much so that her Doctors have never seen it before.

    From the information that we were given today, her prognosis was not great, they explained that if she has sustained Liver damage than her life expectancy is only 2-3 months.

    She is still in hospital where they expect she will remain for another 3 months. They mentioned it would take this long to get her insulin injections under control, they did not mention a pump though.

    I note that your son was installed with a pump at 2 weeks of age? Was this in New Zealand?

    Sarah was also born with a bowel obstruction and had bowel surgery at 6 days old, she needs a further operation to put her bowel back together when she reaches about 2kgs.

    Last night her sugar levels reached 43 before they were able to get them down and she was able to hold them between 5-12 today.

    How old was your son when you were able to bring him home?
     
  16. miss_behave

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    Hey Sarah'sMum, I'm sorry to hear of your daughter's diagnosis. I think I read you're in Australia? Whereabouts? I think most children's hospitals here in the capital cities have good pump programs. I would definitely ask about it.
    I really think a baby is a great example of someone who needs an insulin pump ASAP. You absolutely need the tiny dosage amounts (Animas can do 0.025 units) you can't get anywhere near that on syringes. Most babies I've heard of with D are given a pump from diagnosis for this reason.

    Btw, you're up late! So am I, I suppose, but its summer holidays! :D
     
  17. Cookie Monster

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    Rare would be the word. We are not aware of any other cases in Australasia so welcome to a very exclusive club!
    It is quite possible that our Endo team will know yours as Australasia seems to have quite a close network. I'm not sure if our team might be able to pass on their wisdom. We have been incredibly impressed with the treatment we have received in New Zealand and I've no reason to expect anything less from Australia.

    There was a concern for Finlay's liver in the early days. His stools were white and the worry was that the biliary tree hadn't developed (basically the livers plumbing, how it transports the bile to the gut). They did scans to check which I think were quite difficult due to his size so probably more so in Sarah's case. Fortunately the bile ducts are there and the liver drains OK although he has no gall bladder, which stores bile before secreting it into the gut. Of all Finlay's problems the absent gall bladder is probably the one we have had to worry about the least.
    I hope Sarah's scans go OK. Writing this is bringing back how awful it was when we didn't know what was wrong and the doctors weren't able to tell us. I hope you get the answers you need soon.

    Initially he was being infused with insulin from a syringe hooked up to a fancy machine which gave pretty good control. I'm not sure what their rationale for going with the pump was. It has worked for us. As someone else mentioned the Animas pumps do very small doses which were ideal for us and we continue to benefit from the fine control they allow.
    I'm sure your Endo team are considering all options. Sarah is extremely small (has she grown much since birth?) so maybe they are getting the best control with whatever they are doing. They're the brains of the team. Go with them.

    Again, bowel problems were a concern as a few of the previous cases have had problems but fortunately Finlay is ok in this respect.

    We thought he would have to have cardiac surgery in the first few days of life as we knew prior to birth that he had heart defects (although we didn't know about the pancreas). Luckily his heart was a bit more stable than we thought and he didn't have his heart surgery until nearly 6 months.

    We got him home initially after 2 months. He spent another month in hospital around his heart op and has spent another couple of nights in since when his wound got infected. We are in regular contact with our diabetes team, for a long time it was pretty much daily by email or phone.

    With the glucose levels it's difficult to control even now. The meter we have only goes up to 28 and he is frequently off the scale. Sometimes he can be off the scale for quite a long time so we've no idea how high he actually goes. 5-12 is excellent control. If Sarah's team are managing that then they're doing well.

    Best of luck with all the scans and tests. Not knowing was the worst bit for us in the early days. We'll be thinking of you.
     
  18. SarahsMum

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    Just thought Id update.

    Sarah finally came home last Friday after 16 weeks in Hospital, she now weighs 2450grams.

    Sarah was born without a Pancreas so has Neonatal Diabetes, she was also born without her Gall Bladder. She does have a dilated Bile Duct in her Liver and we are waiting for an appointment for a HIDA scan on her liver.

    She went from the Insulin Infusion to Insulin INjections at about 10 weeks of age, we decided to try Lantus but there was no control so after a week of the Lantus we decided to go to a pump.

    We installed the Animas at 11 weeks old and she is on a Animas 2020 - currently she is running at 0.050 units/per hour, we generally get a high at around 3am, so I think we may be going to a nighrate at her check-up on Wednesday.

    She also has a open PDA in her heart, but currently it is not causing her any issues so we are just keeping an eye on things
     
  19. frizzyrazzy

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    God bless her! That's such a lot for one little baby to handle, but I'm glad you have her home with you now. Enjoy your precious little girl. :)
     
  20. Lee

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    She is such a strong girl to make it through everything and you are such a brave momma! Good luck and I hope her liver scans come back great! I will definitely be praying for your little girl and for your family!
     

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