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8 yr old hungry, skinny, 117 fasting bg 6.7 a1c; eats very healthy

Discussion in 'Introductions' started by nanalou, Nov 25, 2010.

  1. nanalou

    nanalou Approved members

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    He has been in Trial Net for 3-4 years....testing negative for antibodies (this can happen too). He goes to CHOC and the results go to Trial Net. They are putting him in another trial thru Barbara Davis in CO. It covers the following: Major research interest is the Prediction and prevention of type 1 (insulin-dependent) diabetes mellitus including studies of the immunogenetics of type 1 diabetes, focusing on the activation and natural history of specific patterns of autoimmunity in genetically susceptible individuals. Genetic characterization of individuals from three groups: 1) identical twins of patients with type 1 diabetes; 2) a population-based Colorado cohort (identified by cord blood screening of HLA alleles of more than 30,000 newborns); and 3) unique families with multiple generations affected by type I diabetes.

    He has never done a glucose tolerance test. The endo/researcher/medical director/personal friend (very well known) called my daughter today on a Sat. They discussed for over 30 min. He told her that the grandson "is" in a honeymoon, as usually they don't catch it this soon. He doesn't have d diagnosis yet, but he will. Grandson is a much different case than normal. Endo said that most people don't catch it this soon. This process of high bs has already been 4 years for him. Endo reiterated that we leave him off insulin for now. He says that his a1c is still in an ok range. He worries that insulin would give him lows problems. BS at bedtime (4 hrs after eating--went to bed late) was 158. Fasting bs this AM was 123. His recommendation is to keep strict healthy low carb diet and do a1c monthly. We are getting second opinion asap with ped endo asap. If needed, there will be a 3rd opinion. It's the crazy hunger all the time and the skinny body and smallness that still bother me.
     
    Last edited: Nov 27, 2010
  2. Lisa P.

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    If they truly think he's Type 1 in a deep honeymoon due to early diagnosis and low carb diet, they are essentially treating him the "old fashioned", pre-insulin way -- he is using fat and protein to fuel his body instead of carbs, which will make him feel perpetually hungry and leave him thin. My guess would be that he's running moderate ketones much of the time?

    I had a CDE that said when kids are "caught" extremely early, they can sometimes just put them on a very low dose of Lantus and prolong the honeymoon for quite a while. My 18 month old child was on 2 units of Lantus a day during her honeymoon, and she was diagnosed with a 300 to 400 high range. So I can't see how an 8 year old would definitively go low from 1/2 a unit of Lantus, as an example. I'd suggest trying it. He can still maintain lower carb but at least the glucose that he does eat will be utilized by his cells.
     
  3. mmgirls

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    To me it sounds like this endo is only interested in keeping your grandson in the other trial, and if a DX were made or insulin started then it would exclude your grandson from the trial that the endo wants him in.

    Do me a favor and have your son test ketones.

    If ketones are present, then I would go to another endo you have coverage for and ask for a a1c and glucose tolerance test, so that a DX can be made and real progress on sorting out medical issues.

    I think that if you find ketones thaen that proves that he is using his own body, fat and muscle, as fuel and growth and phisical and mental developements are being impaired because he is in "starvation" mode.

    My 2.5yr old IS possitive for 2 or 4 auto antibodies and we are going to Stanford this Friday for an a1c and a oral glucose tolerance test. She is now in PHASE 2 of trial net, since she is positive for the antibodies.

    Were in CA are you, the Trial net Corrdinator at Stanford that I speak to is so sweet, she herself and a type 1 child, would you like her number???
     
  4. nanalou

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    Thank you, and it is my grandson (our son, his uncle, is a type 1). I have been saying the same thing about the clinical trials. I know that the source that we are using (MD) is very, very reputable, but he doesn't deal with children on a day to day basis. My daughter did get the strips for ketones to check. I am calling her to ask. The second opinion is on its way.
     
  5. TheFormerLantusFiend

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    It takes more insulin to cause hypoglycemia in a person who is still honeymooning, usually. I would really think that giving a small amount of basal insulin would relieve the pancreas and prolong the honeymoon further.

    At this point, I think it might also be worth testing for MODY diabetes.

    Your 8 year old skinny grandson has breasts?! Prepubertal gynecomastia is definitely not something that diabetes causes.
     
  6. selketine

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  7. jcanolson

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    The skinny, always hungry suggests the possibility of Celiac disease to me. It is an auto-immune disease that can go along with Type 1. When you go to see the ped endo, I would request that they run the blood test for that.

    Good luck...and I'd stop talking to the well-known adult endo. :cwds:
     
  8. mmgirls

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    graves deseace comes to mind.
     
  9. miss_behave

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    I am highly surprised that an endocrinologist would advocate having a young child on a very low carb diet, particularly when he is apparently underweight and lacking growth. It sounds like this kid is starving. Malnourishment can cause heart palpitations too. To me, with his symptoms and A1c it is absurd that he is not put on a small amount of basal insulin and allowed to resume a normal diet with the carbohydrates a child requires for growth and brain development. I would push to see a paediatic endocrinologist that understands that children are not mini adults and cannot be treated as such.
     
  10. nanalou

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    She is calling ped endo Monday, tomorrow. They will be testing for Celiac at CHOC. Thanks for your thoughts.
     
  11. nanalou

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    I have to agree about the underweight and the lack of insulin. It's probably why I came on the forum. My son is Sean Busby (diag age 19 now 26), diabetic snowboarder. He is concerned too, and knows the endo that has been consulted. We are just waiting for the second opinion now. I will let everyone know what the ped endo says, as soon as he has been seen.
     
  12. ashleesmommy

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    Hi Nanalou...I dont have any advice to offer, as you have already gotten lots of good suggestions. I googled your son and read his speech at the grand opening of the joslin diabetes center at UCI. He is very inspiring and sounds like a wonderful role model! I bet there are so many D and non-D kids who really look up to him! Im sure you're very proud!! Good luck with everything, and I hope you and your daughter can get the answers your looking for for your grandson!!
     

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