Stage 1

My daughter (3 in April) is positive for 2 of 3 autoantibodies (anti-insulin & IA2) wondering who else has experience with this and how fast it progressed if it did progress? Anything I can do now to learn as much as I can before it gets life-threatening?

Hi @Wenninger16 and welcome to Type One Nation. I didn’t test positive for antibodies because there wasn’t an antibody test in the 1970’s. In the day, you lost weight, had thirst, lots of trips to the bathroom and then you would go to the doctor and get diagnosed with a urine sugar test.

From what I’ve heard, antibody tests aren’t conclusive so it’s a waiting game. I hope you are in close contact with a pediatrician and maybe they can prescribe a blood sugar meter so if you see the thirst and frequent urination, you can spot check blood sugar.

There might be some active clinical trials for avoiding onset. There was a vitamins D study going on a year or so ago, maybe it’s still on? You can ask your pediatrician as well if you are interested.

So I’m a dad, and I know you’re going to worry anyway, so I want to share that there is nothing you can do to 100% prevent anything from happening but you can arm yourself with knowledge such as the “Think Like a Pancreas” book and familiarizing yourself with the language of type 1. I wish you good luck :four_leaf_clover: and hope it’s nothing, but if it’s not nothing, this forum is full of people who are more than just surviving this life-threatening illness every day.

Hi @Wenninger16 and welcome to the forum. Like @joe I was diagnosed before there were any antibody tests - or pumps, or even plain old BG meters. That was in 1963 and I’m still going strong. No one wants to get the diagnosis but if you do the knowledge and understanding available is great, but to mention the tools available. I think you’re going to have to wait and see what happens, which is frustrating, but you can get ahead of the game by learning. Think Like a Pancreas is a great resource and Gary Scheiner - the author - had diabetes and works in the field so he has a unique perspective.
I also encourage you to get your daughter started now on healthy habits like making good food choices and getting regular exercise (such as that might be for a 3 year old). That may sound obvious and you may already be doing it - in which case I apologize if I’ve offended you. In my case, my mom tried to focus on healthy choices but my dad didn’t want to deprive me of treats. He would bring home cookies and chips which my mom tried to toss out - but I did develop a sweet and fat tooth that I have to this day. My choices could be better now even though I know how to use insulin to manage them. As for exercise, I was typically active as a child - outside a lot biking and running, and I played on teams in school, but being intentional about exercise was never a focus and I’ve become more sedentary the last couple of years. So whatever you can do to help her appreciate good habits will serve her well whether she gets the diagnosis or not.
Joe suggested a BG meter and that’s not a bad idea. You don’t need a prescription for a “fingerstick meter” so you can get them over the counter - I mention that since your insurance might not cover them and the strips without a diagnosis. The cost of the meter itself isn’t expensive but the strips can be so check with your doctor to see how often you should test - diabetics who do fingersticks test at each meal and bedtime but you won’t need to test nearly as much. Meters should be comparable in terms of accuracy but your doctor might have one they prefer. Some of the lancet devices - which are used to prick the finger for the blood sample - let you adjust depth to minimize pain.
Wishing you all the best.

@Wenninger16 Hi Stefanie, and Welcome to the JDRF TypeOneNation Forum! Like Joe and Dorie, I too was thankfully diagnosed with diabetes long before anti-body tests were designed. I was spared living with “the inevitable” diagnosis hanging over my head. Actually when I was almost 20 years into my long journey with diabetes I was part of the development team of what is now called the HbA1c test which for years was utilized to diagnose impending diabetes.

As you may know, there are studies, many sponsored/financed by the JSRF that are seeking prolonging the period the period between receiving a positive antibody result and the actual inset of diabetes; i suggest that look into those studies for your daughter - click on “Resources” tab at the top of this page. Personally, I’ve been positively rewarded by participating on many diabetes research projects - some of which proved useful and are in use by most of the Members of this Forum.

My best wishes for your daughter, you and your family. Just this past weekend, I read an article in the diaTribe Learn newsletter [ ] offering helpful hunts for family of newly diagnosed. You may want this information: When Someone You Love Is Diagnosed with Diabetes | diaTribe

Hello and welcome to the forum. My son was diagnosed in April 2021. We didn’t have any testing and was totally caught off guard since no one else in our family has type one diabetes. So I guess from my point of view at least, with these tests you know to be on the lookout for signs and symptoms. The Think Like A Pancreas book is frequently recommended here on the forum. I haven’t read it yet…mostly because as a working mom of two teenagers (one T1D, the other not) I don’t have much time to read! Anyway, I thought I would mention what caused me to take my son to his pediatrician the day we were diagnosed in an effort to help. First I noticed my son was losing weight, but he had actually been trying to lose a little so that didn’t strike me as odd. The thing that really “got” me was when he started spooning the milk out of his breakfast cereal, and not eating the cereal. When I asked him him why he wasn’t eating it, he told me he was just really thirsty. The “final straw” that led me to call the doctor was while we were on a trip to a water park. My son wanted to take a nap in the middle of the day while we were at the park…this was extra unusual, so I made him an appointment. From his pediatrician’s office, we were immediately sent to the hospital, and my son was admitted to intensive care because he was in diabetic keto acidosis! It was very scary but we are all T1D warriors and managing one meal at a time. I wish you the best of luck!!

Hi @Wenninger16, has your daughter had any symptoms of blood sugar issues? They may be more subtle than the usual excessive thirst, losing weight, lethargy, etc. My daughter (then 6) was diagnosed at stage 2 - positive for GAD 65 antibodies and some symptoms of blood sugar irregularities such as mood swings, saying her head “felt funny” and getting tired after high carb meals (which is why we took her in to be tested in the first place). As far as I know there isn’t anything to completely avoid the inevitable decline of your daughter’s insulin production/ advancement to full blown diabetes. But there may be things you can do to preserve what insulin production she has for as long as possible and avoid DKA (diabetic ketoacidosis) which can be life threatening. Praise the Lord, our daughter has never been in an emergency room and since she was initially tested and we began monitoring blood sugar we’ve never seen anything over 300. When my daughter was diagnosed, we tried to get into an endocrinologist’s office but as her fasting blood sugar was still under 100, they wouldn’t see her and told us to just wait and see what happened. I read a lot of books about the immune system, autoimmune diseases and diabetes and tried to educate myself as much as I could. We decided we didn’t want to just wait and see because I quickly learned that that would most likely result in DKA at some point. We did two things primarily, lifestyle changes and monitoring blood sugar. She was diagnosed in Nov of 2020 and we didn’t begin insulin until Aug 2021. She did just 2 units at bedtime starting out but then got sick a few times over the fall and began full-time insulin in October of 2021. We sort of just slowly walked into diabetes instead of the usual way most parents find out when their child is unconscious. I would definitely recommend you get a glucose monitor and begin checking fasting blood sugar. We did finally find a small diabetic clinic that would see my daughter in May of 2021 even though she wasn’t technically a diabetic (yet) and if you can find someplace to get into I think that would be helpful. It might be years before your daughter would get to a point of needing insulin, or it might be months. Everyone is different, but for our daughter her fasting blood sugar and A1c started creeping up after every sickness and because we were watching we were able to just call the endocrinologist’s office and make an appointment to go in and get started with insulin before weeks or months of high blood sugar leading to DKA. I hope that it’s many years away for your daughter, but being prepared and knowing what to look for can hopefully help your family avoid any life threatening situations!

My parents told me that I was diagnosed following an illness of some sort, and I’ve heard - and I think read here on the forum - about others who had the same experience. I’m not a medical professional but my theory is that some individuals may already be predisposed to diabetes and the stress of illness on the body affects the pancreas, eventually resulting in the diagnosis. My parents are no longer here to ask for more details so I don’t know if the illness was a simple cold or a “stomach bug” which could have been a symptom of its own. We had no meters back then but thankfully they are available now. If your daughter does get sick be sure to check, and once she recovers keep an eye out to see if those numbers start creeping up so hopefully you can avoid a crisis. And if you start using a meter now you’ll have a baseline to start with.