Wondering about the thought process of T1 parents of Non-DM kids . . . have you decided to have them genetically tested to evaluate their likelihood of developing T1 ?
Why, or why not ?
I considered it, and almost enrolled in a study—my son was 2 at the time, but we had to wait until he was 3 for his blood work to be taken…in the meantime, information was released that even if there is a genetic pre-dispostion, there is nothing anyone can do to stop the onset of Diabetes. At that time I withdrew from the study. Figureing, why worry about something that I have no control over?
My son is 8 now—if he acts overly thirsty or seems to be peeing alot, i get a sick feeling and check his blood sugar—so far, so good.
Mollie , , ,“ditto” ! My son is 8 and I also have had that sick feeling when he had some symptoms and checked BG’s . . .His labwork was drawn, as was mine, but I asked to be blinded from the results, for the same reason . . nothing currently proven to prevent or slow onset. If there ever was some clinical proof then I’d either ask for the results or have him re-tested.
I’m asking because my husband (non-DM) feels that we should have him tested . . and we obviously don’t agree.
I just cant imagine the sick feeling that would be constantly with me if i knew there was a 25% chance or 50% chance of him developing(probably the wrong word) diabetes. Knowing there is a greater chance than the next kid does you no good at all.
And since your husband is not diabetic (neither is mine)—they really don’t know what it is like or how we constantly think about controlling our sugars, food intake, can i eat that? should it eat that? oh one wont hurt me, i really want a giant bowl of pasta—dang—maybe i shouldn’t eat that, what is my bs? 270 what the heck—i bolused correctly—why am i high?
I think it is alot like all the other stuff mom’s have to think about that dads do not…
Dad’s on the other hand—well at least the one in my house thinks more like this—“What day is it? Sunday—game time is 3:00pm.”
I do not have diabetes, but wanted to share my experience with having my children screened for risk of diabetes. My mother, brother and sister all have type 1, so in the back of my mind I had some worry that my own children might develop diabetes. In 1993 I had my son, daughter and self screened for diabetes-related auto-antibodies through the Diabetes Prevention Trial-Type 1 (DPT-1). My son was positive, and entered the oral insulin arm of the prevention study. He was followed from kindergarten until 7th grade when he was diagnosed. He had no symptoms, and, in fact, did not need insulin for the first three months. When it was time to start insulin therapy I brought a totally healthy boy to the hospital. Since then I have joined a research institute involved in type 1 diabetes clinical trials, and I can tell you that although there is not a prevention for diabetes, there are some real benefits to having your children screened. First, only 3-4% of relatives of people with type 1 will have the diabetes-related antibodies. Even though your kids may develop antibodies over time, you still have some peace of mind. Second, the early diagnosis is invaluable, as early treatment has been shown to prolong the “honeymoon”, making diabetes easier to manage for a longer period of time. And third, the data from the DPT-1 study suggest that oral insulin may have delayed the onset of diabetes by about 4 1/2 years in a subset of people with high levels of insulin antibodies. A new study, TrialNet, is now screening family members to confirm this delay. I don’t presume to know your fear as a person with type 1, but I did want to point out some of the positive benefits. I wish you all the best!
Christine, first may I say I’m sorry about your son’s diagnosis . . Secondly thanks so much for presenting this information so clearly. I am aware of all that your shared (althought others may not) other than the the data from DPT-1 w/ oral insulin showed a beneficial delay in onset. I will certainly go back and review that data as we continue to discuss. Thanks so much.
Christine—i agree—thanks for the comments—i had not followed the study further and this information is interesting. You have opened up a different perspective for me. Thank you.
Hi, Mollie and and Deb. Thanks for your kind words. This is a great site- I just found it today.
Just to be sure I’m not misleading you, DPT-1 data did not “prove” a delay, but there was enough evidence to launch the TrialNet study. Many more family members need to be screened, and those with high levels of insulin auto-antibodies will need to be enrolled in the new TrialNet oral insulin trial before the results can be confirmed.
Here’s a link to a brief abstract regarding the DPT-1 study:
http://care.diabetesjournals.org/cgi/content/abstract/28/5/1068
Christine
I think about it all the time. I was diagnosed at age 15 with T1. My wife is a non-diabetic, but is adopted, so we have no family history of her biological mother or father. My wife is also Native American, so that also raises a red flag in my mind, as some tribes have a higher disposition to diabetes.
My wife and I have three children, one biological and two adopted from China. We know that there are no guarantees when having children either bio or adopted, but we know that God will help us get through any obstacles.
My son is seven years old and each time he goes through a growth spurt, we get nervous. We’ve done a fasting blood sugar (needless to say, he DOESN’T like having his finger pricked first thing in the morning!!) and his blood sugars have been normal.
My two other children give us “scares” also when they go through growth spurts, but I automatically think that my bio son would be predisposed to have diabetes.
I am the only diabetic in my family and I have a non diabetic 4yo daughter. Everytime she gets extra thirsty or wakes up in the middle of the night I panic. I did take her to her ped once only for him to tell me she was too young!! Can you believe that…I told him I was only 18 months old when I was diagnosed…he also told me that type one diabetes is not as genetic as people like to think it is and that type2 diabetes is the only type that is linked to genetics…I don’t know how true that is but I still worry for my baby…I would never ever want her to have to deal with this!!!
Andy & Kristie, thanks for sharing . . it seems to be quite a powerful thing that many of us deal with. The panic at supposed symptoms is quite real ! I’ll never forget one time when my son was 3 and we were at a friends ski house . . in the evening he was acting lethargic and peeing often. I tested his BG and it was 156, and I nearly had a breakdown. It was a sleepless night, including a call to my Endo on his cellphone, his wife answered, also a Doc, and was quite supportive. (I do not have a panicky / needy personality otherwise, and I felt so bad about bothering them at night !) . I put it all together the next day . . turns out; he was tired due to being 3 years old out skiing that day, he was peeing alot due to the novelty of becoming potty trained and checking out a new bathroom, and lastly the BG was high because I didn’t bother to clean his hands before performing the finger stick, and little did I know that my husband had let him eat some sticky-goey candy, that was on his fingertips ! Ever since, everytime I do check a BG on him, the numbers have always been normal, including throughout a homemade “glucose tolerance test” using Mike & Ike candies!
From my understanding if Type 2 runs in your family, the risk is much, much higher. With T1’s I’ve seen some data (that now I guess would be considered old) that the risk is only slightly higher than the general population when the Mom has T1, and only slightly higher than that when the Dad has T1. What seems more interesting is the “skipping” . . For ex. my Mom’s Dad & brother had T1, I have one non-DM sibling / sister . . and I also worry for her kids, my nephews. (I’ve heard this example over and over again.)
Has any one else out there struggled with the decision to have your child tested ?
It’s nice to hear other people panic & worry the same as me. I have a 10 yr old & 4 yr old - and it has been a little easier with the 4 yr old regarding worrying. I used to have detailed conversations with my daughter’s pedicatrician about their likelyhood - I would periodically check glucose - and he told me NOT to do that again until I see REAL signs of the illness. He said I knew the signs & symptoms - I shouldn’t worry needlessly. Anyway - I understood to a certain degree what he was trying to tell me - but as a parent it’s hard. It’s nice to hear I’m not alone.
Hey Deb… I went so far as to call about one of the studies when I knew Ryan was having some blood drawn, but didn’t follow through b/c, if his bloodwork had shown antibodies (or whatever they were looking for) it would have triggered a bunch of follow up bloodwork… and I just don’t have the heart to subject him to blood draws unless it’s necessary, ya know? Part of me wants to contribute to the general knowledge/advancement of science, but that’s outweighed by the thought of a blood draw.
Hi, Kassie. My son had antibodies when I had him screened. He was in the first oral insulin prevention trial and really enjoyed going to the study visits! Twice a year he went in for metabolic tests (drinking a really sugary drink and then giving timed blood samples). The nurses treated him like a little king (he was 5 years old when he started) and he loved moving the hospital bed up and down and then eating the hospital breakfast. (It couldn’t have been the food- I think he liked that the breakfast came on a tray and was covered with a silver lid!) The nurses used a topical anesthetic cream so he didn’t feel the needle stick, but he wasn’t afraid of needles, either. I guess it really depends on the kid. The other thing is that if your child really doesn’t want to go through the study you can always drop out. As I mentioned in my first post, I was really glad he was in the study, as that early diagnosis was worth everything. But I know what you mean, my daughter just freaks out at the thought of a needle, so it truly does depend on the particular child.
thanks for posting that - it’s good to have the first hand perspective!
Kassie, Would you consider your fears to be doubled then?
because of John’s T1 status? we figure the kids; chances of getting T1 are about 17%
I am a T1 over 30 years now. I have a lovely 17 year old daughter, non-dm. I worried when she was younger, but I was told normally they show signs by 10 years of age,if not then, they could just become a diabetic later(same chance as anyone else.) I had her tested 1 or 2 times til about age 8. I also heard somewhere that it is passed more often through the fathers genes. My father is a T1 also.
My background is that I got type 1 when I was 13, and before that used to scream at the doctors office every time I got a flu shot. So you know I wasn’t happy hearing I was a diabetic and would have to take shots for the rest of my life. I seriously asked the doctor what would happen if I didn’t take the shots, and was told I’d live for a couple of weeks. I went into the hospital the next day with a blood sugar over 600, and stayed there a month getting in control and learning how to give myself shots and manage diabetes.
Now to the point of the post, when I got married I didn’t even want to have kids I was so scared of them possibly getting diabetes. Eventually I did have 3 wonderful children and had all 3 enrolled and tested in the Diabetes Prevention Trial-Type 1 (DPT-1), but none of them tested positive, my youngest is an 18 year old boy now, and the oldest is married with her own 1.5 year baby girl.
I would recommend genetic testing now, because knowledge is power. Also would recommend getting a “baby” life insurance policy for children of type-1’s. Once a person becomes diabetic, life insurance is very expensive unless you get it as a group from an employer. Buying a baby policy with guaranteed increase options is cheap, and if the child becomes diabetic, may be the only way for them to provide for their eventual funeral expenses. My grandparents got me 2 of those tiny policies, and I keep paying the combined $100/year to pay for my eventual funeral expenses.
My son became a person with Type 1 at 18 years old. He has a younger brother who is 15. His younger brother is very worried he will get diabetes also. I would not put him in this study for fear of “waiting for the other shoe to drop” and live with this fear should it show he has the antibodies or whatever it. We have the knowledge to know what symptoms it is we’re looking for should he come down with Type 1. There’s an emotional side to these studies that needs to be examined for the sake of the child/teenager/young adult. This is just my opinion.