Hi, first time here. My 10 year old daugher was diagnosed with Mature Onset Diabetes of the Young (MODY). Does anyone you know have this type of diabetes? We are in the learning stages and want to know as much as we can. Most of her numbers are in the pre diabetes ranges. However she has had some high enough to diagnose diabetes. Her A1C was 6.2. As of now she does not require any medications. We watch her diet and she gets plenty of exercise. I'm mostly here looking for any and all info I can get my hands on. We just want to help her the best we can. Thanks in advance.

I've never actually heard that term used, "MODY", but I'm guessing that it means that she has Type 2 diabetes at a very young age? If so, then do a search for "Type 2 diabetes", both on this board and perhaps on Google, and you'll find a lot of info.

Type 2 is basically a condition where the body's tissues are insulin resistant, and so require extra insulin in order to utilize food. The pancreas also may not be producing quite enough insulin, or it may be producing a heck of a lot due to the extra demand, which can eventually wear out some of the beta cells (the insulin producing cells). The main difference between Type 2 and Type 1 is that in Type 1, ALL of the beta cells are destroyed. Also, Type 1's rarely have insulin resistance (although it's not unheard of in a Type 1).

You didn't mention if your daugher is overweight. If so, losing the extra weight will help significantly and may even reverse the illness. If she isn't overweight, then I would have her tested again in a few months (C-peptide test), as she could actually be a Type 1 in the "honeymoon stage" where she is producing some insulin, but will eventually stop producing any. If she's overweight, then she probably is a Type 2.

Ruth

Hi Ginger~ I have a 12 year old son that was just diagnosed with MODY in June. Let me tell you what I know, what I have experienced...and then I'll ask you a few questions. MODY is a genetic form of diabetes that was discovered in 1992. They only learned to test for this genetically last year! I believe there are 4 types of MODY. It acts as Type II in that they are not insulin dependant and may not even ever require insulin. It is genetic and there is a 50 percent chance of passing it down. My husband had it. He did not know he even had diabetes until he was 24 years old. They informed him that he had had it for a while because he was already suffering the effects of it, but he had no symptoms and did not know. He did not take care of his diabetes and 8 years after he was diagnosed when he was 32 he was diagnosed with Kidney failure and put on dialysis. Unfortunately....he died on his 35th birthday from a heart attack with too much fluid around his heart.
My son has MODY 3 (and so did my husband and at least 4 generations previous to him) it tends to be mild at first and then at some point gets very aggressive. Right now my son's MODY is in the mild stage and he has no symptoms and his sugars do not run very high all the time. I have read and studied and learned and prayed and cryed and been in denial and been relieved that we caught it early and know what it is....but I have 3 other children by my late husband and I have not gotten them tested yet. I know I need to....but it has been very hard for me to. Part of me wants to know, the other part does not.
Now, regarding your daughter. Do you know what type of MODY she has? Do you or her father have diabetes? Is she checking her blood sugars still? What do they run? I have to say Ginger, I am thrilled to find you on here, because when I tell people about MODY they look at me like I am inventing some new form of diabetes....but I have LIVED it ...so I know it is a true and scary form of diabetes. I can't wait to hear from you.
Janelle
ps> my son is 5'2" and weighs about 85 lbs. soaking wet...so weight is NOT an issue.

Hi, Wow you are the FIRST person to know what I am talking about. Like you said, when I say MODY no one has a clue what I am talking about. We were told in Aug by our family Dr. that our daughter was most likely in the early stages of Type 1. We were sent to a pediatric endo who upon furthur testing determined she is not Type 1. That she has MODY. I have experienced all the feelings that you explained. In fact I belive I am still somewhat in denial.
I am sorry about your husband. Must be very hard for you to deal with this alone.
We have not done the genetic testing yet. I don't really know what I am waiting for other than our Dr. said there is no real hurry as the treatment will remain the same.
We know my husband has diabetes (not needing meds for 5 years since diagnosed, a trait of MODY). So we assume he is the one that passed it on. Whe she was diagnosised her A1C was 6.2. We made several changes to her diet and her last A1C was in the normal range. She checks her bg twice a day. Fasting in the morning (running 119 - 130) and once 2 hours after she eats (those running 140 - 200). They have been creeping up the last month.
What about your son? I have the same questions. How is he doing? Thanks for your reply I posted so long ago I was suprised to see your post. [ REMOVED ]
p.s. my daughter is very thin also......other MODY trait

This is interesting. We have just picked up diabetes in my 17 year old daughter. And I can't help wondering if it is MODY. She is of normal weight, the onset hasn't been as dramatic as with T1 (we picked it up in a chance bg test). And I have been a T1 diabetic for many years.

How was MODY diagnosed? Were the genetic screening tests done? And, if so, what prompted you to do them?

Cheers,

Mark

Hi Mark ~ I can't even remember how I first heard about it. I think I read about it on the internet somewhere, and just knew in my heart that that is what my husband suffered from. When my son was sent to an endocronologist I gave him all the family history and he agreed that it sounded like MODY and ordered up the test. Not every lab can do this test...it is a "specialty test". You may want to mention it to your doctor or even look it up on the web. The Joselin diabetes center at Harvard is actually looking for people to test and find new types of MODY...but I don't think I am allowed to give that URL on here. It may be worth finding out. It may not change her treatment, but it would be nice to know why it is not acting like a "Normal" diabetes. When were you diagnosed with T1 Mark? and how old are you now if you don't mind me asking? More importantly are you taking care of yourself? I look forward to hearing from you.
~Janelle

Dear Ginger,

I can recommend a good book (at least I think it's good! :o) Dr. Bernstein's Diabetes Solution. He's a diabetic AND an endocrinologist. His ideas make a lot of sense, and he tells how to give a painless shot, should she ever need them. I'm sorry about her diagnosis and condition. My son just turned 11 in Novemeber, but was diagnosed with Type I Diabetes last January. We were very shaken up about it. I felt as if I'd experienced a loss (of a formerly healthy, carefree son), and I think he was "in mouring" for a while, too. A negative mood just came over him and I think he was discouraged, even though we tried not to show to much anguish we felt to him. He also had a good attitude about it, actually. He said he was going to be healthier than most people, because he would eat better than they would. He's also made the comment several times that he's lucky to have the diabetes now, when there are SO many low carb foods being marketed! But in the background lies this feeling that we have lost some sense of everything being all right. Some security is lost for us all. I guess it's just an expected thing for some to go through a little shock (we had no diabetes on either side of the family) and sadness and worry. ~ Tracy

When were you diagnosed with T1 Mark? and how old are you now if you don't mind me asking? More importantly are you taking care of yourself? I look forward to hearing from you.
~Janelle

I have been t1 for 27 years and I am 48 years old. I am in pretty good shape, with no evidence of complications. I have always been on a reduced carb diet. But I have recently embraced Br Bernsteins low-carb ideas. My last 2 HBA1c results were 6.2. I weigh 71 Kg and my total daily dose is about 35 units.

The test results should give us a better idea of what is happening withg Caroline. If she is not insulin resistant, she could either be in an early T1 honeymoon stage. Or she could be MODY ...

Cheers,

Mark