Sharing Info with Extended Family

[Paula Steimel]

Our extended family questions the value of getting genetic testing for MODY. They are considered Type 2 and all take oral medicines. How have you informed your family members since discovering MODY in your family?

[Jayme Dautrich]

MY Mom-in-law, who has been diagnosed Type 2 even refuses to admit she is anything....she has terrible complications from her MODY because she doesn't take care of herself at all, she is eating candy, and juice and soda by the barrels and a matter of fact I have seen her down an entire 1/2 gallon of juice in 1 sitting, pouring glass after glass until it was gone....but even after we had the testing done and told her that this is what she has for sure...she refuses and says it must be someone in my side...even though I had the genetic test done and was fine and my husband had the test and has MODY 2...doesn't make any sense that it would come from me!!! My dh has 4 brothers..we told all of them, we are sure 1 probably has it, but we can only give the info, can't make them do anything about it. Genetic testing to me is a gift from God because this disorder is so rare and complicated and has so many different types with different problems, and treatments, if you have the genetic test and can pinpoint what you have for sure, you then have all the information for creating a plan to take care of it, as best as possible...especially when you are considered a type 2 and you have MODY the treatments for type 2 can be worthless basically for some of the MODY types, my dh is a prime example he did years of Metformin, when he was considered TYPE 2, and it did nothing for him..he would go to the doc and he would yell at him and tell him he wasn't doing enough, or doing what he was supposed to be doing..and it was frustrating for us because we knew what we were doing and we were doing what we were told....so to me the genetic test is like putting a light on in a dark room because without it, you really can't be treated properly...get what I am saying? That is why I cringe when people know they have MODY but can't get there insurance to pay for it...If the insurance would pay they would find it cheeper in the long run I am sure because then you avoid so many complications!

[Paula Steimel]

My thought is that family members currently taking oral medications for "type 2," can stop beating themselves up if they are a bit overweight and their blood sugars aren't coming down with metformin medication. Also, those still trying to have children will know that the MODY carrier/s can affect baby birthweight somewhat. Plus, they should begin checking blood sugars in their newborn and periodically throughout childhood even if initial results are normal. We are lucky in that BCBS IL covered our 4 children to be tested for MODY. Currently, our daughter (8) stopped taking glyburide and her sugars have been below 100 frequently and around 129 at times. She had a higher reading this weekend after a birthday party with pizza, but I am not upset with that. I am happy she is off the medication and she no longer is eating constantly from the hunger created by the glyburide. Our three boys continue to have readings from the morning fast and throughout the daytime. We do not have a perfect diet (they eat low-sugar oatmeal, or have various fruits for snacks), but they are taking the most glyburide they can, with little change. So, we wait to get approved for insulin pumps. I will be interested to see if insulin helps, or if they are just always going to run hight blood sugars. Side-note: We bought Stevia this weekend. It tastes good and takes less than a packet for typical uses, just in case anyone is thinking of trying it.

[Jayme Dautrich]

Paula, what MODY type are you, I have to go back and check...anyway, yes we have been on Stevia for a while now and I LOVE it. We do occasionaly have Splenda, but I am turned off from it since I heard it is chemically altered with Chlorine....ughh...I know what that stuff smells like when I put it in my pool, and then to think about my kids eating something it is in....I know they treat water with chlorine for drinking in some areas but still. We avoid aspertame because DH and DS are affected by it.

[Paula Steimel]

My kids have MODY 2. My husband is diagnosed type 2 diabetic,but is probably a MODY also.

[Jayme Dautrich]

I thought so, I am shocked that the docs are considering insulin pumps for MODY 2, we were told that this is the most mild of all MODY and is not treated with insulin....

[Paula Steimel]

I question it also, but I was told that 90-95% of MODY2s use diet and exercise successfully, while a small percentage need oral meds or insulin. It seems we are in the small percentage. We haven't gone to anyone for a second opinion and probably should.

[Jayme Dautrich]

I would get a second opinion if you can, just becasue Insulin Pumps seem like a very big step to take. That is just my opinion though, and I know how difficult it is to get a doctor who can give you a first opinion about MODY. At least where we live! My husband was just to the ENDO he sees and they are considering a low does oral med for him depending on his nxt blood work up. I am interested to see how it is. He has started to exercise more and is eating a bit better.

[Mody sculptor]

I have the same issue in my family. I try to encourage them that getting tested and following the correct course of treatment will make them feel better and possibly extend their life. Since I was diagnosed I have dropped many of the previous meds and have more energy, and I have lost about 60 lbs. I have not changed my diet too much and I really don't excersize. (Although I should). I do feel like I was given my life back. People think I look ten years younger than I am now and before diagnosis I was literally planning my funeral. I was THAT sick. If this is not enough testimony I just don't know what else to do for them. I tell them not to complain too much to me because there are other options out there for our MODY type. I feel very blessed that we found it. They just need to venture into it.

MB MODY Sculptor.