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Would it even matter if my daughter had MODY or not?

Discussion in 'MODY' started by missmakaliasmomma, Jul 14, 2013.

  1. missmakaliasmomma

    missmakaliasmomma Approved members

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    Since joining this site, it's bothered me that my daughter has really low basal needs (and TDD) compared to other kids her age and weight. She was diagnosed with type 1 at 1 1/2 years old and will be 5 in october. I know everyone is going to tell me that all kids dosages vary but hers just seem very low. That, and she requires a lot more bolus. Her basal right now is 2.8u which I will have to decrease because she's had a bout of low blood sugars at night. I was told that her TDD makes it seem like she is borderline honeymoon, but it's been over 3 years and just can't seem to think she'd still be honeymooning.

    A couple of the characteristics that make me think she might have MODY:

    -her low basal needs in conjunction with high bolus needs. It seems as if most kids have a higher basal rate compared to bolus. If I upped her basal, she'd go low all the time.
    -I can rarely get her to stay below 200 2 hours after she has eaten a normal meal, but she does come down after 4. She could start at 80 and it doesn't matter. They say people with MODY have a hard time once they go over 144 while eating (I'm guessing they become more insulin resistant)
    - When pregnant with her, I had borderline gestational diabetes. I was just told to watch my sugar intake. My a1c is still normal, it's 5 (only reason I know is because I'm pregnant again)

    If she DID have MODY, would it even make a difference? Would she still be on insulin or would she be put on a pill? What tests can I ask the doctor to do that would be covered under insurance in the US? I was going to ask for a c-peptide but I don't even know if that would make much of a difference either.

    When she was diagnosed, no one explained to me about the antibodies she may or may not have or if they even tested for them so after 3 years, I still don't even know if all the tests that should've been done- were done. What I was told was that her blood sugar was too high at dx to just be from a virus and that she had t1d. Maybe they were trying to dumb it down... I don't know.

    I don't want to put her through tests if the differences between mody and type 1 are insignificant and nothing would even changed if it were found out she had mody instead of type 1.
     
  2. TheFormerLantusFiend

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    Why don't you first track down the records from when she was diagnosed?
    If she was antibody tested at the time and was positive, then it doesn't really matter if she has MODY in terms of treatment of her diabetes.
    If she does have MODY, then she might or might not be able to go off of insulin, and oral medications might or might not work for controlling her bg. She would be at a much lower risk of thyroid disease and celiac compared to kids dx'd with type 1 diabetes at that age, and her siblings and children would have a much higher diabetes risk compared to the siblings and children of somebody with t1.

    You didn't say what her total insulin needs are, and the bolus/basal ratio can be pretty different even among people w/t1.
     
  3. ChristineJ

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    Like Jonah said, a recommended first step would be researching what sort of testing was done around the time of diagnosis. Though being positive for T1 antibodies doesn't automatically exclude MODY, it is unusual. There are at least 11 known forms of MODY, and treatment varies among the different types, so there's no way to know if treatment would change or not. Even still, if MODY is suspected, genetic testing is a good idea. MODY is inherited in an autosomal dominant fashion, which means each child has a 50% chance of inheriting the mutated gene.

    Christine
     
  4. missmakaliasmomma

    missmakaliasmomma Approved members

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    I didn't even think to call the endo office she was going to when she was diagnosed. I'm going to email the endo she's been seeing to see if she has the results from labs they must have done when she was diagnosed.

    She usually gets between 7-9 units of insulin daily. this puts her right on the borderline of honeymooning according to the .5u-1u/kg rule. Of course there are days we go out to eat and then that dramatically increases. Today she didn't eat a lot at all and her total was a little over 5. that's not too common though. 2.8 is from basal.

    There are auto immune issues with our family. My mom and both of her parents have thyroid disorders, I have a great aunt with celiac, my mother in law has psoriasis, and my sister was just told she has reynauds. Because of all these issues, I would lean more towards type 1 of course (because that seems to be the norm) but it's just these low basals that have me questioning. I don't know if all this history of auto immune issues would even have anything to do with it being type 1 or mody- if its the same risk or not.
     
  5. TheFormerLantusFiend

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    The other autoimmune issues are associated with type 1 diabetes but not with MODY.
    If she's right on the border of 0.5 u/kg/day, that's not a very strong argument against type 1 diabetes. The 0.5 u/kg/day is used by researchers to find people more likely to be honeymooning, but a significant number of type 1 diabetics use less than 0.5 u/kg/day more than two years after diagnosis. And honestly, not very many people have 50% basal, 50% bolus.

    To get a sense of the range of how much insulin children with diabetes need, I like this study, which is only on children diagnosed more than two years.

    According to this study, at the age of 4, the 5th percentile of children diagnosed at least two years need about 0.48 units per kilogram of bodyweight per day. That's more than 5% who need less than 0.5 u/kg/day.

    Take a look:
    http://eje-online.org/content/158/4/543.long
     
  6. cdninct

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    I just wanted to mention that DS is 5, and his basal needs are currently 3.8 units/day, and his TDD is about 11-12 units. I don't think it is unusual at all for small kids to have comparatively low basal needs. The topic comes up from time to time on the site.

    MODY is a mystery to me, though!
     
  7. missmakaliasmomma

    missmakaliasmomma Approved members

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    That makes me feel a little better. I'm sure your son is bigger than my daughter, since she's small for her age and boys seem to be bigger anyway so to me, the extra unit makes sense. It got me worried when someone said their 4 year old gets over 5 units in basal a day.

    I read somewhere last night that when you get tighter control of sugar levels, insulin needs might decrease a little as well (this might have been from the study you linked Lantusfiend, I don't remember). We have been seeing lower numbers altogether with my daughter since we have tweaked a couple settings so I'm thinking this could be the reason for her basal decreasing as well. Her average BG is down 10 points this week from 2 weeks ago and this is the week we had to lower basals. Also it could be in combination with the fact that we are having such better luck since we changed the insertion sets she uses, the other ones kept getting blocked with blood in the cannula, in which case we'd obviously see a need for more insulin.

    Is your son in school yet? If he is, did he need more/less basal or did it stay the same?
     
  8. cdninct

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    Nope, he is starting in September. He did nursery school 3 mornings a week, but that wasn't enough time to make a noticeable difference, I don't think.

    K went swimming with his 2-year-old pump two days ago, and he has been on shots since. We're currently doing 2u of Levemir in the morning and 1.25 units in the evening, and numbers are great (better than on the pump, which makes me think that settings need to be tweaked!), so his basal needs might be lower than I had thought.

    Oh, and by the way, while we can keep things stable(-ish) at other meals and snacks, K always spikes over after breakfast (regardless of food choice or number of carbs) but is in range at 4 hours. No changes in basal-bolus ratio, I:C ratio, or amount of prebolusing seems to touch the problem. I think that is just the way he works!
     
  9. missmakaliasmomma

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    I never thought that it could be the fact that I'm giving her the bread at breakfast. I know most D kids have a hard time with breakfast so why this never crossed my mind- I don't know. And I too have tried increasing the IC, prebolusing, all that and it doesn't matter either (I'm probably repeating myself though as I'm thinking I wrote this before in this thread lol) I honestly don't think she has much bread at any other time of the day other than breakfast. Thanks for bringing that to light for me.

    This morning I lowered her overnight basals again after seeing a drop of 100 throughout the early hours of the night/morning. So, currently she's set at around 2.5u. I only lower them .025 at a time because I don't want to be too aggressive. I'm hoping we get the basals stable soon!
     

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