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Friend is waiting for tests

Discussion in 'Parents of Children with Monogenic Diabetes' started by MamaLibby, Nov 27, 2011.

  1. MamaLibby

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    Hi all...My daughter Ella is ten years old and has had type one since she was two and a half. A close friend of mine from our homeschool co-op has two little girls. The younger one is 15 months old. She was born with a series of heart defects, got type one at three months, and underwent open heart surgery at five months, and faces another before she's two. They sent in the DNA testing for monogenic diabetes three months ago and will be getting the results any day now. Please sent your thoughts, prayers and good vibes towards this little girl and her family. She's been through so much and if she could get off shots it would make a world of difference for all of us. Thanks!
     
  2. ChristineJ

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    Best wishes to the little one and her family! Are they working with Dr. Philipson's group at the Kovler Center/Univ. of Chicago?:)

    Christine
     
  3. MamaLibby

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    I'm not sure, but I think so.
     
  4. Cookie Monster

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    This must be a very difficult time for your friend. I wish them well.

    While it doesn't sound exactly the same, we have been through similar issues with my son. He has been diabetic since birth and had a number of cardiac ops including open heart surgery at 6 months. He will require another surgery in the next year or two, but for now is stable and off the cardiac drugs.

    The combination of heart defects and diabetes in a child as young as your friend's throws up some unique challenges such as glucose control during and post-surgery; maintaining glucose levels through heart failure where normal feeding may be difficult; tube feeding and many others.

    If there are any questions you think I could help with please pass this on. If it helps, your friend could check out the blog in my signature.

    My son is now 3.5 years old and, although he has some ongoing issues, is a very, very happy little boy living life to the full.

    It does get easier.
     
  5. MamaLibby

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    I will pass that on for sure! If I can ask, what heart defects did your son have? Her daughter had atrioventricular canal defect, three additional atrial and septal defects (a total of 5 holes in the heart), and mitral valve regurgitation. She's been doing very well in the ten months since her op, but will probably require a valve replacement in the coming year. Thanks so much :)
     
  6. Cookie Monster

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    He only had three holes, two ventricular and 1 atrial. He also had pulmonary artery stenosis, patent ductus arteriosus, right ventricular hypoplasia and a tricuspid valve defect.

    The ventricular holes, the PDA and the pulmonary artery stenosis were fixed at 6 months. The atrial hole was left open to ease the pressure on his small right ventricle. This will be sorted out in the next year or two, possibly by some replumbing of the vessels around the heart.

    None of those two paragraphs would have made a bit of sense 4 years ago!;)
     
  7. MamaLibby

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    You've got a great attitude...that's the only way to get through any of this. Glad to hear your family is so positive and Finlay is doing well! :)
     
  8. MamaLibby

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    Results in

    Well...they got the calls today. Seems like Miss Lucy is a rarity. She tested negative for all of the mutation and showed strong T1 antibodies. So it's type one after all. Now they'll move forward with getting her a pump! Thanks for your thoughts. Keep calm and carry on...:cwds:
     
  9. Cookie Monster

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    I think a pump would be a great idea. It has worked wonders for us, particularly when he was younger. The small amounts of insulin it can deliver allow much better control. And with better glucose control he was able to grow quicker which made him stronger for his heart surgery.

    It looks like your friends are in good hands. It's a long battle but worth every second.
     

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