Pre T1D, confused

MY daughter is 24 months old, what started as low blood sugar in April spiraled into high blood sugar by mid June with numbers over 200 and occasionally hitting 275. Her 1st A1C was 4.8 so doctor dismissed everything I said but referred us to an Endo who ordered a repeat A1C in September which came back 5.0. We were seen in his office last week another A1C was drawn showing a 5.1. Although my daughters number have since stabilized, mostly normal with an occasional high I am concerned about the rise in A1C especially these last few days because she is back to frequent urinating, increased thirst, fussing ness and repeat yeast infections. Unfortunately I can not have the auto antibodies test done till she is 30 month’s old, that is Trial Nets rule. I guess I am just looking for other people who noticed a problem before the problem was even truly there. I have been monitoring her blood sugar, mostly fasting but we will test when she is " acting out/weird" her fasting is 88-110 normally and her random glucose is usually under 150 but they do spike. I have read so much about this being early T1D but I wouldn’t mind hearing form other’s who have dealt with this… MY husband thinks I am nuts so I’m just looking for others so I don’t feel so crazy. Haha

@Mommyof1preT1D hi Kathleen, sorry you may not want to hear from me.

I can offer, to you, that antibody positive or negative (meaning no matter what the outcome) , 24 months or 24 years old, type 1, type 1.5, 2, 3,5,7 or whatever, the goal is blood sugar control. the only differences are in the meds - not the “watched variable” blood sugar.

a1c under 6 is good (period). normals spike from time to time, normals have low blood sugar as well.

you are not going to start to treat until fasting is above some set limit and further testing to see if she can make her own insulin or if she can’t. and there is medicine for either situations.

I cannot comment on the fuss, or the yeast, but if her BS is normal… then it ain’t blood sugar.

you’re testing, you’re studying, you’re doing great. my advice (sorry) is not to panic and not to obsess. It is most likely that she won’t go DKA due to nobody knowing. that’s a big leg-up. since you’re watching, she won’t have the damage of severe high blood sugar and massive weight loss which is what brought most of us to the hospital… kinda ready to die.

hang in. there is nothing more you can do and her blood sugars are actually great. if she was making no insulin and on insulin, that’s when it gets really very hard to control… not to scare you… still manageable with training and patience.

cheers… peace… and continued reasonable blood sugars! -Joe

Ahhhhhhhhh Kathleen @Mommyof1preT1D, you are NOT weird but rather a concerned mother wanting to protect and care for her [your] daughter in the very best way. I wish you well in doing that and wish the best for her and for you; I also think your husband is making some sense.

Although your daughter’s blood-work does not clearly support a medical diagnosis of diabetes, there are indicators that MAY indicate that one or more of the various types of diabetes could be in her future - I am NOT a medical doctor - so I suggest that you listen to and follow recommendations of the doctor who has examined and knows your daughter.

Having lived with MY diabetes for 63 years, I certainly hope and pray that your daughter does not have diabetes; although I’ll tell you that even if she has diabetes - now or in the future - she will be able to live a long, happy and fulfilling life.

Kathleen - I agree, you are not crazy but smart for paying attention. I also have experienced this, however my son is 9. I have had Type 1 for 43 years, so I am aware of the symptoms, as well as the fact that he may have inherited this from me. So, from a young age, I have done random tests - maybe 1-2/year, if he was super thirsty or something, but was totally normal. This past June, he was given an A1c, that came back at 6.1. The pediatrician said to keep an eye on him, do some random testing. We started finding big swings - from 60-275, so we saw the diabetes center. They did the autoimmune tests, and yes, he was positive on all markers they checked. So, we knew it was coming. Contd monitoring, with only random highs, and always after large carbs, so still no action needed. By the end of Oct, he went to 300, 400 then 500 in a matter of days - and officially diagnosed and needing insulin. I give you all these details because the whole thing boiled down to if/when he needed to start insulin. My advice is to cont doing random testing. When the turn happened for us, it was very obvious. And, as stated previously, you will be able to avoid the common DKA pathway that sends most kids to the hospital, and is super scary.
I can relate to the uneasy feelings - and once his autoantibody tests came back positive, I felt like a freight train was coming and nothing I could do. That prompted me to seek out any studies looking at prevention. Unfortunately, he was diagnosed before we could try anything. As soon as she is able to get the auto antibody testing - that should be done, and will give you a better idea of what may or may not be going on.
Hope she continues with stable sugars!

Hi @Mommyof1preT1D. It sounds like you’re song a great job keeping an eye on things. Although Trial Net says she must be 30mos for the antibody testing, her doctor/endo may be able to make a case for earlier testing, so keep tracking those numbers. Keep doing what you’re doing - better to be safe.