My 5 yr old twin daughters were diganosed with diabetes in May 2008, but after further watching of sugars changed to MODY in August 2008.  This past January they were finally diagnosed with MODY 2 after the genetic testing.  We are able to control their MODY with diet and exercise (with being 5 is no problem now).  You can tell when their sugars spike, because they fall asleep rather fast, and when they lower they wake back up and are off again.  We do fasting checks in the morning and a 2 hr check after dinner.  If they are showing other signs during the day, we check it then too.  I just keep looking up research on my own, because here in the USA they really don't know much about it even after 10-15 yrs of knowing.  In fact their regular dr. didn't even know MODY was out their.  It was in the endrocrinologist that knew right away what it was.  We caught this by accident when one of the finally gave a urine sample to the dr. when she was sick.  If not for that we would still be going through the daily "stomach hurting" "not feeling well" routine.

My son and daughter were diaagnosed with mody does anyone know of a support group or any studies being done? My doctor is just watching there levels. Should I be doing more. They actually think it is a new mody that hasn't been named yet but is like mody 3. My kids will spike a high level and go down within the hour without medication. They have eaten candy and carbs and it still goes down on its own. I am so confused and not sure what if anything I should be doing. Can anyone share what their endocrin has been doing. My son is 6 and daughter is 4. I haven't tested my 2 year old yet. Thanks

Mody7? First time i've heard of MODY7. Are you sure that's the case and that it's not MODY 2: caused by genetic defects of

My son (age 2) was also diagnosed with MODY.  They believe his is MODY 7, which is very rare and supposedly there are only 1 or 2 doctors with expertise in that type.  The doctor is in Briminham, England and we are in Columbus, Ohio.  I too am diabetic, as is my sister, my dad, his mother, her mother, and I guess also her mother.  MODY is clearly a genetic disorder.  Mathias is not on treatment yet but will be as soon as they decide HOW to treat it.  I was on an insulin pump but now take oral meds and sliding scale Novolog insulin.  Mathias has blood sugars well into the 400's and can drop right back to 170-200 range within an hour.  I agree that MODY is probably less cruel to children than type 1 but it seems like not enough in known about it to effectively control it.  If anyone knows of any experts here is the U.S., please email me ***@****.  We are getting ready to do further testing on my 2 year-old and my other 2 kids and myself, which I understand it very costly if we have to send it to that doctor in England.  Thanks.

'kitchenwich35'!

I was searching for the latest research about MODY and happened to visit this site and read your comments and questions. I

Kitchenwich,

I do not know what MODY diabetes is.  I only know of type 1 and type 2.  I am a type 1 diabetic and would listen to what the type 2s have to say.

If you are running 160-240 and up, you are a type 2 diabetic.  You may be able to control your diabetes with a strict diet, but you may need meds to get it under control.

If your  daughter is 45-450 she is a type 2 diabetic and might need meds unless her diet can keep it between 80-120 which is the normal operating range for blood sugar readings.  Any blood sugar reading over 150 is dangerous and needs to be kept under control.

Your husband at 120-140 is a borderline type 2 diabetic and can probably keep it under control by watching his diet.

I would talk to an ENDO rather than a regular Dr and I would also have the children tested.

Bob

Thanks for the info! The pediatric endo is the one that diagnosed the MODY. Her regular doctor told us she was hypoglycemic, and would grow out of it. We took her to another doctor for the fasting test. In the first hour she jumped to 180, and fell suddenly to 45! They rushed her to the emergency room, and have to give i.v. glucose, as she was sweating, shaking, and although her eyes were open she could not respond, even when they stuck her with the i.v. needle. We are waiting test results now to see which form of MODY she has. From what I read, there are 6 different mutated genes that can cause this. This may be why the endo didn't go into alot of detail on our last visit. One website I found at 3:00 this morning was about misdiagnosing MODY as type 2 in children, and giving too much insulin to these type kids is becoming more common, causing even more problems. The site you sent me to lead to a few other links, and all said that only 2% of the diabetics have this form. If there is anyone out there that has MODY, or knows more about the problems this can cause later, please let me know. I am SO glad I found this site, and pray that we get answers soon.

Hi Kichenwich,

I am a volunteer here and have been living with Type I Diabetes for 12 years. As I don't have personal experience with MODY I can only direct you to some resources that will be able to better help you.
First, there is an article about MODY in the Diabetes Care journal, which I think can give you some background information about the condition. It is a bit scientific but you can still get a lot out of it. You can access the article on the following website: http://care.diabetesjournals.org/cgi/reprint/23/3/381.pdf

Below is a portion of the article regarding MODY:

"Maturity-onset diabetes of the young(MODY) is a rare form of diabetes in children that includes several disorders caused
by monogenic defects in -cell function inherited in an autosomal-dominant fashion. Recent studies suggest that the clinical spectrum of MODY is broad, ranging from asymptomatic hyperglycemia to a severe acute presentation. These gene
abnormalities are thought to be rare, and molecular diagnostic testing, currently only available in research laboratories, is
required for specific classification. Until such testing becomes commonplace, children with MODY should be classified as
having the type of diabetes that best fits their clinical picture.
Individuals with type 2 diabetes do not generally have autoantibodies to -cell proteins; fasting insulin and Cpeptide
levels are usually normal or elevated,although not as elevated as might be expected for the degree of hyperglycemia."

Other helful websites: www.cureresearch.com/m/mody_diabetes/intro.htm
http://en.wikipedia.org/wiki/Maturity_onset_diabetes_of_the_young

Finally,I would definitely advise you to seek an endocrinologist for you, your daughter and your husband. I am especially concerned about your daughter's glucose range. Your fasting glucose may also be of concern. It is difficult for me to ascertain exactly where the problem lies without having more information. I think your entire family will benefit from seeing an endocrinologist who can help you keeo the sugars under control.

It seems from what I've read that MODY is in fact caused by a hereditary factor, but I don't know how probable it is for your daughter to pass it on to her children. That can be further explained by your endocrinologist as well. And by all means have your other children tested. It can't hurt and you'll feel better knowing.
Good luck to you and please check in with us if you need anything else.