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5yr old may have MODY....

Discussion in 'General Discussion' started by 4blondies, Nov 21, 2005.

  1. 4blondies

    4blondies Approved members

    Nov 21, 2005
    I have been to numerous site and have seen/talked with my son's endocrinologist many times but still have gotten no solid concrete answers or even an inkling of an idea as to what is going on. The only commet I get is well, what's going on with your son you have a right to be concerned because it' definately isn't normal.

    Here's what has been going on:

    This all started when he had his 5yr old well child appt. to get ready for kindergarnten and his pediatrician asked e if I had any concerns/questions. I said yes I do. My son has been complaining of feeling dizzing, to the point where I can't leave his side because he gets scared. I have also noticed that he gets so thirsty that he freaks out on me if he hasn't gotten enough to drink or that what has has drank doesn't help...sothus he pee's more often because he's constantlydrinking. She ordered a 2hr post prandial... it came back at 165, with a fasting of 50 and a creatine level of .4. Upon further testing we've found that his urine osmolarity & sodium levels were fine (to rule out diabetes insipidous). His endocrinologist did a thyroid test along with an antibody test and they both came back fine, however he had a fasting sugar/insulin test that came back at 139 for glucose and insulin was not traceable. We repeated the serum insulin with a c-peptide & BG level and two hours post meal his BG was 150, insulin was 36 (high: range is 5-24) and c-peptide was 6.8 (also high:range is 2.3-5.4). This was with a fasting of 243, 1hr of 198 and the two hour at 150 with all of the other levels. If you didn't know that my son was only 5 and 35lns at 43" tall (he's lost 5lbs since all this has happened) you'd think he was a type II with insulin resistance. However, when at home with our own Glucometer, we get fatsing BG's that are anywhere form 43 to 243... most of the time he's 104-139 fasting. 1hr post meal he's always into the 200s, or on occassion he'll be in the upper 170s-190s. The funny thing is his A1C is only 5.4, which means his average is 115. It must be from the lows that he gets sometimes?? His endocrinologist is thinking MODY... however he's ot doing much other than he wants a fasting BG, insulin & c-peptide again. My son's teacher & nurse at shool want to know what is goign on because often he'll end up in the nurse'soffice not feeling well (complains of abdominal & eye pain). He did this to me the other day complained of not feeling well, so at 4:50pm I took his Blood Sugar and it was 213! 4hrs after a meal with no snacks. (all he has for lunch is a PB&J sandwich on whole wheat) with 100% grape juice (6oz) and peanut butter crackers. Am i crazy and everything is normal??? I just feel this endocrinologist isn't really taking us seriously. He's at a well renouned children's hospital... and yet my own son's pediatrician think's he's type II. But the endo. says no because of the age & weight. I am angry, confused, sad.... with almost no help with what's going on:(
  2. Ellen

    Ellen Senior Member

    Oct 22, 2005
    Over the years I've heard of similar scenarios where the doctor couldn't decide if it was indeed type 1. It seems difficult to find documentation of very early onset of type 1 and the way it progresses. In some children it is a slow onset while in others it comes on fast and furious.

    Re the stomach pains, have they checked him for celiac? You mentioned the whole wheat bread and the peanut butter crackers.

    As for MODY, there are very specific molecular genetic tests to confirm the various forms of MODY. Several have been identified. At a minimum, the endo can have those tests run too. You may have recently read this article in the news http://www.ccnmatthews.com/news/releases/show.jsp?action=showRelease&searchText=false&showText=all&actionFor=565260
    If you want to contact the researcher, his email address is: polychronakos@mcgill.ca

    Keep us posted. We all understand how frustrated you must feel.
    Last edited: Nov 22, 2005
  3. cydnimom

    cydnimom Approved members

    Nov 8, 2005
    If all they have done is urine and blood tests and they are inconclusive then maybe they need to dig a little deeper. Are they reluctant to incur medical costs? Have they checked for tumours? Perhaps a catscan? Have they checked growth hormone levels, because I have heard of that causing insulin resistance as well. If you are not happy with what you are hearing is it possible to seek a 2nd opinion with another endo?

    I know its terribly frustrating when you know something is wrong but cannot pinpoint what it is. Best of luck to you.
  4. maverickmom (Kerri)

    maverickmom (Kerri) Approved members

    Oct 22, 2005
    Our endo and I were discussing MODY back in Oct. He said the only place currently studying MODY is overseas (I think UK but he might have said Europe). It's not lucrative over here, I guess (the testing is expensive).
    It would probably be treated like type 2 since that is what it more closely resembles. Has the dr ordered genetic testing on other family members?
  5. mischloss

    mischloss Approved members

    Dec 5, 2005
    Sorry for the ignorance...what is MODY? And to put my comments in regarding your son's symptoms. My son is Type1 and had to drink, drink, drink for the longest time....years he would be thirsty...way before any of his numbers were going out of whack. He was always also tired and achy in the legs. Got a blood sugar test 6 months ago and he was 120! Then 3 months later full blown T1!!!

    Not to frighten you but your child is pre-diabetic. Where type1 or type2 is not the main issue. The main thing is that you get medical help of some sort immediately. If not from this current doc. then someone else....TODAY!!! My son had blurry vision for about a month before he was diagnosed. We just thought that since I need glasses he was going to be needing glasses real soon. Over one long weekend (Labor Day) he pee-ed and drank all the time. Was tired and sleepy and lost 6 lbs in 3 days. We took him in and his sugar then was over 500! That's when it finally "came out" but we had had some sypmtoms now that we think back on it for years!!! So please, please, DO NOT IGNORE your child's symptoms and get help immediately.

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