Hello I am new to the forum. Background I am a type 1 diabetic, dx 15 years ago. My mother and brother are both diabetics who were dx after me. So I am very familiar with type 1 obviously but we were all sick and were dx right away with type 1. I noticed back on 1/19 my daughter ( 29 months old) was having some symptoms so I randomly checked her and she was in the 200’s. I decided to wait until the next morning to get a fasting on her before I jumped to conclusions and called her doc. She was fine for almost a whole week. Then on 1/25 she was in the 200’s again and got up to 241. We brought her to the pediatric hospital. All her blood work that we could get back that night was fine so they let us go but we had instructions to follow up and wait on her anti body testing. Her a1c is 4.8 and her islet cell test was negative but we got back her GAD results and they wee 212. Okay so we know she will be insulin dependent…but when… has this happened to anyone else? Is there a timeline for this sort of thing? The highest she has been since her ER visit was 190 after only 15g of carbs which is rare for her because her “norm” is 80-95 and I can tell when she is high. Any help would be appreciated!
Hi @EBeazzo - I am coming up on 30 years with Type 1.
Here is my experience with a T1 toddler that may answer some questions.
About a month ago, I noticed my 16 month old was drinking a lot of water off and on (not a continuous think). He doesn’t have a lot of words yet, but was pretty good at saying water and pointing to the water dispenser on the fridge. We thought he was thirsty from his molars coming in or the cold he had but because the thirst came and went, diabetes was not the number one thing on my mind causing the symptoms.
After about three weeks of this, I thought I better test his blood sugar as he seemed a bit more tired than usual. He was 240 (13.4) fasting in the morning. I then made the Dr’s appointment for that afternoon and was concerned about him having diabetes, but not really worried about doing anything fast. I then tested for ketones in his diaper after breakfast and it came out as moderate which sort of freaked me out and we went to the hospital. At the hospital they did blood tests and he was not in DKA. His blood sugar on admission was 250 (14.0), which in my opinion is not extremely high, but he was showing ketones. Blood pH was normal, but because he was so young (and his bicarb was borderline on their lab range) the doctor was concerned and hooked him to an IV and started hydration then insulin. They diagnosed him as Type 1.
I personally was shocked to see moderate ketones at 240 (13.4), but there it was.
If I think back the timeline from when I thought something was going on was probably about a month from something is not quite right to “I better check this out”. The symptoms early on were hit an miss for the first couple of weeks. Some days he was thirsty and then he probably went a week with being normal (no thirst), which kind of seems similar to your experience of your daughter being over 200 and then back below for a week.
Now he is on insulin (MDI with humalog/levemir), he takes very little and it seems like his pancreas is still producing quite a bit of insulin as he does not really spike after meals. We generally don’t bolus for small meals right now at all and his blood sugar does not seem to change much between meals. This will change as things progress, but it is sure nice to see reasonable blood sugars all day long for now. (We test like 8 times a day right now - worried that we won’t catch lows as he can’t tell us how he is feeling).
The other day I tested and his blood glucose was 514 (28.6), but then I remembered I forgot to wash his hands after he ate some Rockets (Canadian version of American Smarties) to bring the blood sugar up a bit after a meal that he didn’t eat all of. I tested again (after washing of course) and everything was fine 
I suggest that you keep testing blood sugars like you are doing and check for ketones if your daughter is over 180 just to be on the safe side.
And don’t be like me and forget to wash her hands before testing…
I would strongly suggest - with your strong multi generational type 1 history - to request some genetic testing to see what gene you have in play here. It might make the GAD results a whole lot more sense, in that you all might have a form of monogenic diabetes. Identifying monogenic diabetes in a pediatric cohort with presumed type 1 diabetes - PMC
Your situation sounds similar to mine. I have a T1 husband, 2 T1 kids (dx at 10 and 13 years old). They were dx last summer, me dx this January. My 6 year old is currently acting up. Unfortunately from what I know, there is no time line. I’m fixing to get all of the rest of our nondiabetic children tested for antibodies. At the very least I think some form of insulin intervention needs to be given to keep the super highs with ketones happening and causing DKA. Best of luck to your little one.
I would strongly suggest getting in touch with folks at TrialNet; they may be able to tell you about timelines and progressions. I think there are some studies but I can’t dig them up right now.
My 8 yo is currently in process of a diagnosis. I’m the diabetic here since 8 years ago. I’m on the type one grit Facebook page, which i recently got to join. That group is super helpful on managing diabetes in children. They use low carb and target normal blood sugars for their kids. Please message me with your Facebook name if you’re interested in this approach and can ask for you to be invited. Group is by invitation.
I’m reluctant to post stuff that can give false hope, but it costs nothing and may at least delay onset. If nothing else the child will have a very healthy gut biome
http://www.nature.com/ismej/journal/v5/n1/full/ismej201092a.html
Hence, the autoimmune microbiome for T1D may be distinctly different from that found in healthy children. These data also suggest bacterial markers for the early diagnosis of T1D. In addition, bacteria that negatively correlated with the autoimmune state may prove to be useful in the prevention of autoimmunity development in high-risk children.