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
A couple of things come into mind. You didn't mention the age of your daughter. If she is coming into maturity, then she could be having some crazy blood sugars especially in the early morning hours.
We went through something similar last fall. Our daughter had just finished tennis season and her average glucose readings showed a significant decrease over the last 90 days. The average per all of the testing was down about 35 points. With all of the exercise, we expected a great A1c. To our endo's surprise, her A1c had actually gone up. She suggested that our daughter wear a continuous glucose monitor for a week to see what was going on. I have not heard the term permanent blood sugar control but assume that is a continuous glucose monitor.
The results from the monitor was very interesting. It showed a significant increase in glucose levels which began every morning around 3:30 to 4 am. It also showed that our daughter was spiking much higher than we would have thought after meals, especially breakfast. We varied the level of carb intake at breakfast to see if that impacted the spike and we found the spike was fairly consistent regardless of the amount of carbs eaten.
We have subsequently increased her overnight basal settings. We are also trying to have her give herself insulin 15 to 30 minutes before a meal to help control the spikes. We have just started to test Apidra to see if that does a better job controlling her spikes. She now wears a continuous glucose monitor all the time and it is helping us identify action points.
Yes, I'd try checking blood sugar shortly after meals and more at night, and absolutely try a continuous glucose monitor. But still, those are very high HA1Cs, that normally you would need a lot of highs to get those Ha1cs. There are other medical things that can cause a high A1C, like anemia, so I'd get iron levels checked, and look into other medical reasons that can cause a high A1c. Another thing it could be is a problem with the A1C test, especially if you use a home test, not a doctor's office test. If they aren't done correctly, they can be wrong. Even the doctor office tests are not always standardized (well, they didn't used to be, maybe they are now). When she gets an A1C she also gets a blood glucose level; compare that to the reading you get on your meter. (Maybe your meter is not working? I'd doubt it though). I really don't know!
Just an obvious suggestion, but please be careful and do a test in the meter to see if it is measuring too far from the glucose control solution. My son once dropp badly his meter and it start giving him 25% discount in his glucose, and it was a sad A1c of 7.3 for a false 137 mg/dl two month average.
yes this is (continuous glycose monitor) Our daughter is 12. her morning blood sugar tests are always between 80 & 110. We're also going to increase the tests AFTER meals and see. Thank you so much for what you shared.
One question,is the A1c tested in a lab or with the machine that uses a drop?I find that the machine is not too accurate.Also try to have your meter calibrated,your reading could be off because of that.Or even wrong coding of meter(if meter caries a coding chip)or the lab could be wrong.Explore a few options and wait,it will work out.
My first guess is if you are doing a home A1C test, that it is not accurate. If you are checking her as often as you say, including night time and not getting high readings, to have that high of an A1C, the numbers don't jive. I wouldnt even think if she is spiking high after meals that with the rest of the readings being good that it would cause an A1C to be that high.
Do you have more then one meter? Possibly use both for a bit to see if the readings are close.
I am a huge fan of the continuous glucose monitor. My son is 13, very active and not only does it give me some peace of mind, it helps catch highs and lows before they arrive. The CGM gives predicted warnings before the highs or lows happen, allowing you time to correct them and prevent them.
I would check her around 3am. This is the time that a lot of teens going through puberty have a spike in blood glucose. By the time morning comes when you check her, she may already have came down.
thank you (especially about the blood iron I didn't know it could affect A1C) and no we don't have home test in France all A1C and made in labs.
since I wrote the post we have discovered she had hidden some bedtime highs. not sure it can explain the whole situation (because when i random checked in the night, it has always been reasonable glucose levels)
we're going to get another meter brand, too. in case...
it is lab made. they're always in France. i just discussed the meter calibration with my husband today, we will check this and make sure it is on properly.
i think the (recent) "hidden" highs at bedtime (have to find out why since it is not about the dinner food) are for most responsible for it, even though A1C=12 sounds sooo bad while day time insulin is managed properly (?)
thank you so much !
thank you for sharing. yes we have two meters but same brand, so we're considering buying another brand (as a comparison...) but we have to check if well calibrated.
no there's no possibility of home A1C here in France, all are made in labs.
and unfortunately there is no health insurance coverage (for anyone whatever cover you have) for continuous glucose monitor in our country. they would cost over $900 a month and most people can afford it -- they are use mainly for hospital supervision or if your doctor wants to check something going wrong (like in our situation) for one week. But you don't have to convince me how useful they are !!
even if my daughter says that anyway she wouldn't want to have a secnd infusion set to deal with...
As I said since I posted a few hours earlier, my husband (he's a doctor but not specialized in diabetes !) & I had a serious conversation with our daughter and she admitted (in tears) that she omitted to tell us about some bedtime highs she has had (because for her she said it would have been like getting a bad mark at school !). Still this doesn't explain the disastrous A1C because she really doesn't skip bolus and doesn't eat between meals + the random checks I had made on some nights were normal...
Thank you for the tip about 3am, I didn't know that : I checked around 1am or 5am...
I have to look further if we can get Apidra here. Unfortunately we can get continuous glucose monitor other than under hospital supervision (for people staying in hospital) or just for a one week test on doctor's presciption. and they are not covered by ANY insurance over here.
Tell your daughter that it isn't quite like getting a bad mark in school, this time it is different. She gets to be the teacher, and the diabetes is her student. She doesn't give her student tests, she just checks her students progress sometimes, and when her student, diabetes, is having trouble, (high/low) the teacher might need to step in and problem solve and show the student how to do better.
Sometimes, she might need to make her diabetes sit in the corner for being so mischievous! But it is not a reflection on her!
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.
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.
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.
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...
