Mody sculptor's Page

My seven year old son and I have MODY 2 - R36W. He presented at the age of 5. He was dianosed with type one first and then when he came up negative for the antibodies the doctor said we should just watch him with no treatment. He had lost seven pounds and was already very thin, going to the bathroom all of the time and drinking like a fish. I was not comfortable just watching him get sicker and sicker and after three months I found another ped endo. At this time I had also mentioned my son's diagnosis to my endo. He imediately mentioned that we might be a MODY family. He said it was rare, but to ask the new ped. endo to run the tests.

I was gestational for my third pregnancy and it went away 6 months after I gave birth. It came back for my fourth pregnancy and this time it became fierce to control and then when it never went away they called me a very unusual type 2. I was on insulin, then Metformin, (which made me feel aweful) then we just kept adding meds. As I lost all of the weight, my numbers would go up after about 6 weeks, we would add meds and then be good for six weeks, then the numbers would go up. We added Januvia which did not do anything.

When we asked the ped endo to run the tests he reluctantly did so. He knew my endo had a great reputation but he had never had a MODY case before and thought it was very unusual. He did see that my son's A1c was 5.7 in the hospital and he was super thin. We had Dylan on 5 small shots a day. Sure enough we had Mody 2. I began to read as much as I could and being an adoptee I also began to find and speak to birth family members to document a family history. It was quite bad. My father died or a heart attack at 48 and his seven siblings all died in their 40's and 50's from heart attacks and strokes. Of my own 11 siblings two have died at 40 and 50. one of cryptongenic chirosis and one from pnumonia, (shoe also had Juvenile Rhumatoid Arthritis) I also have two brother with Diabetes, one who has had two heart attack and a stroke by age 56 and a sister age 36 with Diabetes who has had two strokes and a heart attack.

We heard a Diabetes talk related to a JDRF Fundraiser on the radio and a family was talking about Dr. Philipson at U of C who got their Mody daughter off of shots and onto pills. I e-mailed him and he called and requested for us to come in. They are accumulated much data on MODY at U of C. They ran a molecular study of our DNA for us (no cost for the testing or appointment consultations) and pinpointed our exact mutation. We were not part of a study but we do allow them to share the info with Dr. Hattersley and others in Execter England. They have only seen our exact mutation in two other families in France. Tho other families have a similar type but it is still a little different. The good news is Dylan is currently Diet controlled and I am on Byetta, 10 mg twice a day. We take 200 mg of Vitamin D and I take Magnesium, baby aspirin, a perscription vitiamin, and B12. Byetta has changed my life. I have my energy back and feel great. We still get concerned that Dylan runs a little high, typically 140's post meal, but jumps up to 16-200 after one meal a day. He is very small and thin so regulating his diet is tricky. Whe we had great numbers he was not gaining weight and hungry all of the time. We ride the fine line all of the time, trying to provide him enough carbs but not so much that his numbers go up. We discuss medication every visit but between the docotrs and us, we have been opting not to start anything at this time. Our biggest fear is the heart attack and stroke history. The researchers keep saying this should not be related to our Mody 2 but at the same time they say that ours is unusual to the typical Mody 2's and they just really don't have enough information.

I would love to hear about diet and numbers of the other children out there so we can have an idea of how to rate ours. Whe I compare the numbers to type one kids we are great. Oh, our A1c's are always good to low, anywhere from 4.2 - 5.3 for me and 5.3- 5.7 for Dylan.

Hope to hear from some of you.
MB- mody sculptor