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Neonatal diabetes

Discussion in 'Parents' started by Hymergirl, Jun 4, 2017.

  1. Hymergirl

    Hymergirl Don't have diabetes · Member

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    Hi all. My baby girl was recently diagnosed with neonatal diabetes at 3 weeks old. I'm looking for any fellow parents of a neonatal diabetic baby/child, or anyone with neonatal diabetes themselves. I know it is a very rare form of diabetes, so I don't know if I will be successful in finding anyone on here, but I'll keep my fingers crossed. Please get in touch, many thanks!
     
    • Hug Hug x 1
  2. Jaylee

    Jaylee Type 1 · Expert
    Retired Moderator

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    Hi @Hymergirl ,

    Welcome to the forum.

    Now I'm racking my brain to find you a member with a simalar status to you..
    But if it's any help? I was in a band with a T1 bass player diagnosed at 18 months old & got his diabetic medal for 50 years..

    What I will do is tag in a fellow moderator that maybe able to help? @azure
     
  3. catapillar

    catapillar Type 1 · Well-Known Member

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  4. azure

    azure Type 1 · Expert

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    Hi @Hymergirl :)

    Sorry to hear about your daughter's diagnosis. It must have been very stressful to have her diagnosed at only 3 weeks old.

    I can't recall any parents of children with neonatal diabetes here but that doesn't mean there aren't any. I do seem to recall an adult mentioning it recently though, so I'll rack my brains and try to remember their name for you in case they have relevant information.

    Best wishes,

    Azure xx
     
  5. azure

    azure Type 1 · Expert

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    @Hymergirl The member I was thinking of is @hisjen84 :)

    She hasn't been online since February so keep checking back in case she responds.

    I think there might have been someone else too, so, again, I'll post if I remember their name.
     
  6. azure

    azure Type 1 · Expert

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    I've found @rstonepal who says she has Type 1 neonatal diabetes but, again, hasn't been online for a few months.

    Also, @Qemajlosmani says he has a daughter diagnosed with neonatal diabetes, but has not been online since last year.

    @Craftyjack123 was awaiting tests on their child to confirm the exact diagnosis.

    There was also a parent recently whose child has a form of diabetes that went away. I can't remember their precise diagnosis or their name, but will post if I do.
     
    • Like Like x 1
  7. kuku babie

    kuku babie · Member

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    My boy also had that neonatal diabetes. It was such a difficult time when he was diagnosed at his first week when he was born
     
  8. azure

    azure Type 1 · Expert

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    How was he treated @kuku babie ?
     
  9. kuku babie

    kuku babie · Member

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    He started insulin since he was diagnosed.
     
    #9 kuku babie, Jun 9, 2017 at 4:27 PM
    Last edited by a moderator: Jun 9, 2017
  10. azure

    azure Type 1 · Expert

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    It would be helpful if you wrote a little more here so that everyone can read it :)

    Is your son still on insulin? Did they try oral meds first? What insulin does he take @kuku babie ?
     
    #10 azure, Jun 9, 2017 at 5:44 PM
    Last edited: Jun 9, 2017
  11. emmachapman86

    emmachapman86 Type 1 · Newbie

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    Hi my little girl has neonatal diabetes. She was diagnosed at 16 days old.
    She turned 3 a couple of weeks ago xx
     
  12. BrownsThe

    BrownsThe · Newbie

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    Hi Hymegirl, thank you for posting and I'm so sorry that your baby has been diagnosed at such a young age, so first of all I just want to send lots of strength to you and your family. It is a lot to take in but of course it all gets easier with time. Our little boy was diagnosed at 3yo about 6 months ago and we have since had another baby boy who is now 3 months old. Our baby seems perfectly healthy now but may I ask what symptoms your baby had which led to the diagnosis? We feel like we wouldn't know what signs to look for in a little baby as it is much harder to spot things like thirst and peeing etc. It would be so useful to hear the story of your diagnosis if you would be Prepared to share it.. x
     
  13. kuku babie

    kuku babie · Member

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    Sorry I was very busy yesterday. Let me copy some of the messages when I was seeking advice from different diabetes forums. ...................... ............ Im very stressed coz my son is in hospital for the past 25 days because his sugar levels are just going high not low, so the doctors are trying lot of types of insulin but sugar levels are stil going high
     
    • Hug Hug x 1
  14. kuku babie

    kuku babie · Member

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    What are better drugs which i can use for him, now he is 28days old and he is being given 4units of actraphane in the morning and 4units in the evening. What can i do,,Mainly his sugar levels played above 33....Morning, my issue is that, my boy was diagnosed with transient neonatal diabetes few days after birth and he wa on injections upto now he is 16months, I didn't not give him his lantus for seven days this week, and this also happened when he was 14, months and after 8days his sugar levels start to go up , could this be honey moon period, thankyou so much, im going to see his doctor tomorrow Monday,
     
  15. kuku babie

    kuku babie · Member

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    I had decided to forward some of the messages when I was seeking advice from different diabetes forums. My son is now three and he is still on insulin. I'm also just praying and hoping it will go away one day. If you have any questions pliz be free to ask me. I also faced many challenges and I couldn't find any one with the same condition like me and it stresses me a lot.
     
  16. azure

    azure Type 1 · Expert

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    @kuku babie Unfortunately no one here is a doctor so we can't give medical advice.

    Is he on Lantus as well? Did you stop giving him the Lantus (it's not clear from what you wrote)?

    If he's in hospital with high sugars, he's in the best place. They should be able to control his blood sugars, but that might take a little time as they need to be careful his blood sugar doesn't go too low. So they might increase his insulin very slowly.
     
  17. azure

    azure Type 1 · Expert

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    @kuku babie If these posts are old messages from other forums, that will cause confusion as they have your son at different ages and contain different information.

    If he's in hospital now, then that's good because he'll get the care he needs.
     
    • Agree Agree x 1
  18. kuku babie

    kuku babie · Member

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    Sorry those were the past messages I was sending to other groups long ago I just copy them and paste them. Now my son is 3 years and he is well and he is on lantus insulin for the past two years. I hope I made it clear. it is best to seek medical from your doctors. This was my experience
     
  19. azure

    azure Type 1 · Expert

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    Ok - I'm very glad your son is well now :)
     
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