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.
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.
sounds wise. thank you.
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.
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.
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!
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...
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.
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 !
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 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...
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!