Any other MODY(3) parents out there?

[tealas]

I have MODY3, and my son unfortunately inherited it from me. He is 4 years old - and so far I have only seen one elevated blood sugar. Because of the low-renal threshold that accompanies MODY3, I am focusing more on urine screening so I can keep a closer eye on him, but not freak him out with too many blood sugar tests.

I try to keep his diet balanced and low glycemic, but once he hit toddlerhood his favorite meal became chicken nuggets and french-fries And I figure that teaching him balance is more important than being overly restrictive and creating a reactive psychological process in him.

Is there anyone else out there going through this journey of trying to limit or delay expression of MODY in their child?

[jessicaanne18]

I have MODY3, and my son unfortunately inherited it from me. He is 4 years old - and so far I have only seen one elevated blood sugar. Because of the low-renal threshold that accompanies MODY3, I am focusing more on urine screening so I can keep a closer eye on him, but not freak him out with too many blood sugar tests.

I try to keep his diet balanced and low glycemic, but once he hit toddlerhood his favorite meal became chicken nuggets and french-fries And I figure that teaching him balance is more important than being overly restrictive and creating a reactive psychological process in him.

Is there anyone else out there going through this journey of trying to limit or delay expression of MODY in their child?

Hey there,

I am a 19 year old MODY3 with an unique mutation specific to my family, my Mother is also MODY3.

We have only had doctors recognise our unique type of diabetes lately, but we have always known we were not type 1 or 2 and our family also has a long history of wrongly diagnosed diabetes.

As my mother knew I would eventually get diabetes from a very young age she had me on a fairly strict diet, although it is hard to make a grumpy and very stubborn 4 year old to eat her vegetables.

I believe she was largely successful as I didn't need treatment until I was 15 years old, I was put on minidiab, a sulphonylurea, which I reacted badly to (it heightened my blood sugars to ridiculously high levels).

After being hospitalised I changed doctors and was recommended to go on insulin, long term humalin, which is working for me alot better.

I am, however the youngest person in my family to have to go onto insulin, as most other members are taking metformin and doing fine, including my 75 year old Grandmother!!

I think this is because I have grown up in a world where food is largely processed with high levels of refined sugar and saturated fats, causing alot of damage to my body at a young age.

[MommaMae4girls]

I myself have been diagnosed with Type 2 diabetes, but I am almost positve it is MODY & what my 2 daughter have is MODY.... I was first diagnosed when I was 18 and pregnant with my first daughter but I was diagnosed with gestational diabetes and told it would go away after pregnancy, the ironic part was my sister was also pregnant with her first daughter & was also diagnosed with gestational diabetes, and my father was diagnosed with Type 2 diabetes 3 months before we were and put on oral medication.... Needless to say both my sister and I had our daughters and the high blood sugars never went away and we were both eventually diagnosed with Type 2 diabetes. I went on to have 3 more babies (all girls) and had gestational diabetes everytime and was immediatly put on insulin. The problem with my daughter didn't start intil my 2nd daughter Jaida was 2 and started drinking alot and have problems with going to the bathroom all the time and almost impossible to potty train. She then was diagnosed with "Pre-diabetes" (I would also like to mention there is NO obesity or weight problems within my family) My daughter had been to her normal doctor and then to a pediatric endocrinologist at a childrens hospital. They have been watching her growth, have me watching her diet, and checking her blood sugar levels 2-4 times a day. He has mentioned he thinks that it is MODY but he would need genetic testing and out insurance will not cover it and us having 4 children cannot afford it. We then were told we had to have all our childrens Hemoglobin A1C checked and we found out that our oldest daughter was not a diabetic but that our 19 montb old daughter was a diabetic or "pre-diabetic" They are still urging us to get the testing but it is too much money and we are trying to fight our insurance company because they say that they test is not needed. We are keeping their blood sugars under control but it has become more and more challenging. I think that my dad and sister also have MODY but they have not been tested.... my sister has also not had any of her children testest. Recently I have had my 4th daughter who is now 6 months of age and has not been tested yet but will be when she is 1 year old and if she is fine she will still be tested every 6 months until she is 3 and then she will be tested every year like my oldest daughter to make sure they do not miss anything. I think MODY is very misunderstood especially by doctors. It is so frustrating!

[jemblake3]

Hello all!
My 12 year old and 10 year old have been on low doses of insulin for 4 years. Their endocrinologist suspects mody, but insurance won't pay for it, of course. I also have and 8 year old who we watch for high blood sugars. It is a very frustrating situation to say the least. The insurance company approved the testing,the doctor's office drew the blood and then the lab refused to test it, saying it wasn't covered! They can't get their acts together and in the meanwhile, my kids had unnecessary blood drawn as if they haven't been through enough already. We're in the process of finding a lab or clinical trial that will test them. I can't afford to pay for it myself either. It's over $5,000 for each child.

What kind of treatment do your children receive for mody?

Vicky
Mother of 3

[tealas]

Hello all!
My 12 year old and 10 year old have been on low doses of insulin for 4 years. Their endocrinologist suspects mody, but insurance won't pay for it, of course. I also have and 8 year old who we watch for high blood sugars. It is a very frustrating situation to say the least. The insurance company approved the testing,the doctor's office drew the blood and then the lab refused to test it, saying it wasn't covered! They can't get their acts together and in the meanwhile, my kids had unnecessary blood drawn as if they haven't been through enough already. We're in the process of finding a lab or clinical trial that will test them. I can't afford to pay for it myself either. It's over $5,000 for each child.

What kind of treatment do your children receive for mody?

Vicky
Mother of 3

Vicky - my son is not yet receiving treatment. However his last HbA1c was 5.5 and he sometimes has numbers in the 150-160 range after eating pizza. We are going to see a nutritionist next week.

FYI - if MODY3 is likely - just test their urine and compare to blood sugar levels. MODY3 is characterized by lower renal threshold. If you see them spill lots of sugar in their urine when they only go up to max 140 or 150mg/dl after a meal, then it is very likely they are MODY3. I can give you journal references for this information from Exeter University research.

Personally I can take a minimum of insulin if I just eat a ~50-75% raw/paleolithic type diet, with green smoothies every day. But how do you get a 5 year old to eat that way!?

[MODY MOM]

After alot of fighting and return trips to the doctors and hospitals, i have finally had my daughter ( 8) diagnosed with Mody 2, glucokinase. i too have been diagnosed with diabetes, they say type 2, but its likely i am the same. does anyone else have children with MOdy 2, love to find out how you are dealing with it, what concerns you have and how you are advised to care for the children with it.... our experience to me is slightly ' its nothing to worry about' but then my child is ill, you can see that she is not well and i dont feel im doing all i can for her... any advise or experience would be a great help.

[Steal]

I just wanted to let you all know that your conversation has made me think so, so much. I have Type I and consider myself knowledgable about my own condition, but I have learned that there are so many more types of which I was unaware. Thank you for the conversation. A friend of mine recently told me that doctors believe her family may have had some form of MODY (she didn't say a specific name, but everything you have mentioned links with her description), since almost everyone was diagnosed later and called it Type I (mistakenly). I have begun to read more and more and just wanted to thank you for sharing and helping me to learn.

[MODY MOM]

I recently called the Diabetic clinic to raise concerns for my mody 2 daughter. her blood was 11.6, she was grey, crying with headache dizzyness and very floppy/tired, also lots of trips to the toilet. she usually goes like this if her numbers go over 10, or under 4. I realise 10 isnt too high and this is why docs say not to worry, but when it affects her this bad, what am i supposed to do. Does anyone one if i can give her something to bring sugar levels down? I have tried asking and asking but i feel they think im just a panicy mom. I dont test her all the time, only if she appears ill. It was described to me as a thermostat in the body. just set a little higher than most peoples and has and will be like this forever. But i feel as no one knows that much they dont understand and we are just getting advise from a book? id love to get in touch with people who know more about it and who deal with it and others experiences. i hope someone can help me...