Everything seemed to work just fine since my daughter has been on a pump. Daily glycemias always come normal, and random checks at night were normal as well.
BUT the two A1c's she had in October and this month are DISASTROUS (10.8 and 12). She was 5.8 the first 3 months she was on injections.
We are a family who eats no junk food, don't drink sodas (organic & homemade) and since she's been diagnosed I even use whole flour/grain in all my baking & pasta... and have completely stopped refined/white sugar for healthier options like agave and such.
We respect a minimum of 3 hours between meals and she's the good girl type who doesn't "cheat" on anything.
We are scheduled to see the diabete specialist soon -- I had him on the phone this winter and he said there was no obvious clue about what it might be but he suggested a permanent blood sugar control (holster) for a week to see if there are any hidden highs -- however I would be interested in hearing if any of you have ever experienced a similar situation and what/where the problem was ?
Thank you !
ps : I'm French, so sorry for any (language) mistake
Oh, poor kid. Please let her know, those nighttime highs are not her fault. Her hormones (growth hormones mostly) cause them. Many kids (my son included) become insulin resistant in the early part of the night and it causes their BG to go higher. I have to increase Eric's basal rate by almost 50% between the hours of 7 pm and 12 am so he will stay in range, and sometimes even that isn't enough. If he's in a growth spurt, he could shoot up into the 400s if it weren't for his CGM telling me about the high BG readings — I know this because some nights, if he's sleeping in such a way that the pump's alarm is muffled, I do not hear the alarm for several hours and I go in at midnight to find him at 375! But after midnight, his insulin sensitivity is greatly restored, and often even if I do not hear the alarm and correct him, his basal rate will start to bring him down, and the only reason I'll even know he went very high is because his CGM tells me. So that really could be the main cause of her bad a1c readings. But she needs to know these highs are absolutely natural! If her pancreas worked, it would put out more insulin to accommodate the hormonal shifts, but since it doesn't, she just needs to adjust her insulin to compensate. This is a learning process and it's very difficult for kids her age. Actually it's difficult for adults too!
Those highs at bedtime could explain much of the higher a1c, because they don't happen all the time and your random checks may miss the highest point. If a CGM isn't a possibility, and it sounds like it isn't, maybe what you can try is 3 days of checks every 2 hours during the night. You'd lose some sleep, but you could establish whether there were any distinct patterns overnight. Then, you could set her pump to increase her basal rate during the hours she goes high to see if you can bring her down into range. You'd have to keep checking her during the night after increasing the basal in order to ensure that you'd gotten the levels right (you don't want lows overnight, either!) but with some trial and error and checking regularly, you'd figure it out.
Oh, and one other thing she should know: it's not at all uncommon for teenagers to have high a1c's and poor BG control, even when they're careful about their diet and they always give themselves the right amount of insulin. The hormones play absolute havoc with BG, especially in girls when they have their menstrual cycle established. She is going to find herself getting very, very frustrated if she treats the Hba1c like a school test. She needs to try to take it day to day, making sure she takes her insulin and adjusts her insulin intake whenever she gets a pattern of highs, and LOTS of exercise is a must.
dear Elizabeth : I read this with such great interest, and have my eyes wet at how much I learned and how well you understood the situation & helped. Before I posted here we didn't know about how hormones can interfere for teenaged girls. This is something doctors should talk about !!! but it seems the twice a year dr appointments are only about checking the glucose level numbers ! :( If only you knew what little help we get here in France !
Yes no CGM here, so my husband & I are back to the night "duties" we had just after she was diagnosed and each of us take a turn & wake up every 4hwhich means her blood sugar is checked every 2 hours. It seems it spiked really badly on some nights while other were within reasonable limits, so random checks missed this, no pattern and when she wakes up in the morning glucose levels are "nnormal" again.
Basal was increased, and especially in these evening hours.
I hope we made it clear to her this time, that no matter how brilliant she is at school, more insulin doesn't mean failure -- it is just how the pancreas would work -- and diabetes is not like homework & getting a good or bad mark.
A very big thank you to you, for taking the time to write all this, it was much appreciated.
I am so glad to hear that. So strange that there's no obvious pattern. Do you keep track of what she eats? There may be some certain foods that cause her blood glucose to behave differently. Lots of people on this forum have commented that particular foods will send them sky high. Maybe keep a food log and compare it to her blood sugars, and you'll start to see a pattern where the super-high blood sugars correlate to something specific she eats.
And, I would also suggest, that once she starts getting menstrual cycles if she hasn't already, she should graph out her blood sugars against her cycle for several months. The changes in female hormones over the course of the month will also affect her blood sugars, so if she figures out the pattern over time, then she will know how to adjust her insulin intake for it. Since I don't have to worry about this (I have a son, not a daughter), it's not something I would normally think about, but you might ask some of the women on this forum what their experience is.
no she hasn't yet. this is something I will certainly keep in mind. thank you for everything.
we started by adjusting her basal in the evening /night & she had a blood check up right away to make sure kidneys are fine (given the A1C). a higher evening basal seems to work well and after " days i can say we are back to some more regular/reasonable glucose levels. now that we know she was high we will try to make a connection to certain food she might eat (i read this on other discussion threads) I guess this takes time... again, thank you
KcF : this is a very wise image (teacher vs. student) to keep in mind. We of course had this conversation with her quite a few times (that highs & lows, insulin units or A1C are not like marks) but being a brilliant student she can't help but have high expectations about herself. She really thought she could manage the evening highs by herself without our help. thank you so much for your message.
Please remember,diabetes is a very personal thing.No two people respnd alike to the same regimens.It will work out because you are working on it and your English is very good!
thank you for your nice words and support. It means so much to me, to us, because over here in France there is no online or real life support group (only a possibility for some 2 week-camps, which she doesn't want to attend) like you all. I wish my daughter's (level of) English was good enough to interact here by herself and get in touch with other teenagers over the world... one day...