Being a T1 diabetic and having my oldest son diagnosed as an infant, I always feared for my 2 other children getting diabetes. I had my 10 year old daughter tested in the Type 1 Diabetes Trial Net Screening because she was showing some crazy blood sugars when she was sick a while back.
From what I understand on this test... they are tested for 3 particular autoantibodies. If the test is negative, then no diabetes showing at this point of life. If 1 or more autoantibodies are present then there is a chance that this person may get diabetes (but unknown to when they would get it) and you can move on to the next phase of this study. We have not done this yet.
Has anyone had this test or tested a child? I am interested in hearing about your experience. My daughter's test showed positive for one of the autoantibodies. I have not explained this to her yet and not sure that I should or need to.
What are your thoughts? Jennifer
Depending on age, I would not tell my daughter until it became necessary. You can already push a healthy eating style by example, and you know the signs to watch for, so she is unlikely to be in any immediate danger. By not saying anything, you spare them the anxiety and fears of the unknown. Obviously she will grow and mature to the point where she should know for her own health, but I don’t think loading unnecessary stress is good for anyone. As a t1 parent, we all live with that nagging voice in the back of our head about “what if my child gets it too?” Luckily there are sites like this one where we can share with others like us! I won’t outright lie to my child, but by time she knows to ask directly, I figure she will be able to handle the answers. My 2 cents.
Thank you for the quick reply. I am thinking along the same lines as you are. I don't feel that she should have to take on the worry that she may get diabetes. My doctor has been great to work with on this. My daughter is already very physically active and eats healthy. If I do anything, I may have her tested again at the one year mark to see if the autoantibodies have changed.
The advantage that I can see about knowing if a child is pre-diabetic (showing more autoantibodies) is that they are dosed only when blood sugars are up, which isn't always often at first. Taking a shot maybe every other day to start with is not a bad way have to go verses 3-4 shots daily for kids who are newly diagnosed. The other advantage to this is that the child learns negotiating carbs (sweets) vs a shot right off.
Thanks again for the comment. Jennifer
I had my 2 year old tested at Trial net within the last 6 months. I was very anxious for the results and luckily they cam back negative. All the antibodies have been linked (at least loosely) to the future development of T1, but there are some which have a much higher correlation. This information would be very important to me.
Since you got a positive for an auto antibody it puts you in an interesting situation. I have thought about it, but am not sure which actions I would take?
First off I would be hypervigulant to assure (if the worst happened) my child would not have to enter DKA for diagnosis. I would have a talk with trailnet to better understand my child's risk to develop T1. Do they have a 15% chance in the next 5 years or a 66% chance in the next year? This could make a huge difference.
Here are things I would consider (and likely need to gain much more knowledge before I could make a reasonable determination).
Weekly BG checks (just to be sure)?
I would have to determine if 1 autoantibody should be considered something similar to a honeymoon phase (maybe pre-honeymoon?) If I made the determination to consider this related to the honeymoon phase, then I would try to prolong it. This is where I am quite uncertain?
Diet changes? would diets lower in carbs cause less insulin production and thus less autoantibody attack? Could diet changes linked to less inflamation slow down the autoimmune response?
Vitamin/supplements? either to promote a "healthy" pancreas or to decrease inflamation?
Here is a link to an older conversation that may have some topics worth considering: Type 1 diagnosed 8 months ago and not using insulin. Unfortunately it gets off topic...But the idea of preserving Beta cell function is prevalent and an issue I would greatly consider.
I am interested to hear what you think.
Riva Greenberg just blogged about the upcoming T1 research summit. They will be doing TrialNet screening at the summit if you sign up beforehand.
Hello Capin101! Thanks for the comments.
I am not doing weekly BG checks at this point. She is not interested in this and I don't want to make her think I am worrying about this. So we check about one a month just to see where it is. We have had decent readings from when we check.
When she was not feeling well and I checked her sugars she was 206, she and both started crying as we were quite surprised at the reading. I took her to Primary Children's Hospital (this was before the Trial Net studies) and they were not sure what to do with her. They had 2 other children in DKA that day and they were very, very sick children. We stayed for the day and was released.
Primary Children's Hospital is a wonderful hospital when it comes to trauma. I learned through this experience that if my daughter does start the diabetes process that she will be treated through the Utah Diabetes Center and will more than likely not have to spend a single day in the hospital upon diagnosis. As a matter of fact Utah Diabetes Center said they would prefer that if we can treat her outpatient it is better for her overall. Of course my role is key in catching this asap before she starts any forms of DKA.
Wow... that's quite a conversation piece on the "Type 1 diagnosed 8 month....".
Jennifer
Thank for the info! Jennifer
