Mody 2

[momtomody2]

My six year old daughter was diagnosed with MODY 2. We are unsure about anyone else in the family. I have an 18 month old daughter but she has not been tested or shown any type of symptoms.

[Paula Steimel]

Hi,
I would love to hear more about your story, current care, etc.
Paula- mom to four with MODY2

[momtomody2]

Hi Paula,

My daughter, Emily, at around 3 years old had glucose in her urine at her annual well visit. Her pediatrician said we would just watch her. The next sick visit he checked it again and there was glucose in her urine and I believe her blood sugar was 140. He then referred us to a pediatric endo. at UAB. We started keeping a check on her blood sugar levels and they sometimes get a little above 200. I have only got it as high as 210. I have never got one below 100. Her fasting test was high. but her 2 hour tolerance test was barely under the diabetic level. I don't remember the numbers.

It's strange because her morning sugars sometimes are up to 136 before she eats. After a couple of years the dr couldn't really pinpoint her diagnosis. She is thin and definitely not type 2, tests show not type 1 because no antibodies. The insurance approved for the mody test and it came back positive for mody 2. I had never even heard of this and don't know anyone else with it. They say mody is rare. Right now, she isn't on any kind of medication just diet controlled. She has adjusted pretty good. The dr. said just let her be a kid. If she wants a cookie, give her a cookie. Just not all day long! Soda and juice really makes her blood sugar shoot up. So she only does diet soda.

My thing now is she stays extremely tired all the time even with plenty of rest. She has always been very active and almost hyper. She often naps when she gets out of school. She has to go to bed really early or she is very grumpy and whiny. I'm not really sure if this is associated with the mody2.
I hope I didn't ramble too much. My husband has been borderline diabetic for some time now. So we think it probably came from him. Mine hasn't been high yet. I also have an 18 month old daughter.

I would love to hear from you as well or any suggestions are welcome.

[Lisa]

Hi, my 12 year old son has MODY 2 and was diagnosed a year ago. The reason I took him to the doctor was for being tired and that is how we discovered the slightly high glucose. It sounds like tiredness may be a side effect of MODY 2. My son just watches his diet and exercises.

Lisa

[Mody sculptor]

Hi,

My son and I both have Mody 2 R36W, the tiredness is definately from Mody 2. I have dawn phenomena as well, high numbers in my fasting testing before I eat. My son is currently only diet controlled. We do diet drinks only too. I get worried about his numbers since our medical history in the family is not too good.

We just keep watching closely. Good luck with everything and keep us updated.

MB mody sculptor

[Paula Steimel]

Thank you for sharing more information. I think our children are similar, with the exception that my boys will get blood sugar readings as high as 300-400 in the late afternoon or early evening, especially if they miss their glyburide dose. (They take two pills before breakfast, one before lunch and two before dinner.) Their morning blood sugars before diagnosis and treatment averaged anywhere from the 130s to 200 and A1Cs were 5.8-6.2.
I too see more fatigue in my children than I would expect, as well as the overall grumpiness. Interestingly, my daughter did several months of one glyburide pill per day and was less grumpy! We discontinued her pill last month due to her A1c and daily blood sugar readings remaining good. Now her blood sugars are staying mostly below 100, with some creeping into the 170s at the early evening hours, but not every day of the week. She had previously often had readings over 200. Maybe the glyburide induced a change in her body's ability to sense the need for insulin release and she is now improved. Yet, I was surprised to find that she is grumpy again this month while off the glyburide. It may be a coincidence, but I won't know unless she goes back on glyburide in the future. I can really relate to the description of "whiny and grumpy" and also a "little hyper." That fits my kids. So much so, that while considering insulin pumps, the doctor mentioned how overwhelming it can be to just have one child on a pump, let alone several. Our story has two new twists. The first is that the A1Cs for the kids do not seem to reflect our frequent readings over 200. Our doctor said our hemoglobin may be different and since the A1c measures sugar in the hemoglobin, it isn't reflecting it accurately. So, we switched to a blood sugar test done by blood draw that is not based on hemoglobin. The second thing is that my youngest son (4 1/2) was approved for a pump which should arrive next week. The doctor thinks that if possible treating with insulin is more natural than a medicine like glyburide and may give more consistent blood sugars throughout the day, especially by pump. I asked why the other MODY's aren't doing more than diet and exercise. He replied that we seem to have a strong expression of the genetic problem in our boys at least, and it wouldn't be good to let them remain with higher blood sugar levels for so many years into the future. Best to bring it down right now. Also, he knows we are challenged to try to be strict with diet and exercise and busy lifestyles. I feel disappointed in myself, but it is true. I hope the pump thing goes ok and that we are making the right decision. I saw so many healthy, active and happy Type 1 kids at the CWD conference recently and hope my kids can adjust as well.