From Colorado, USA:
We moved to Gypsum, Colorado from Florida and my daughter has lost a lot of diabetic control. In Florida, she was still in her honeymoon period and things were great. She was diagnosed when she was 10 1/2 and we moved four months later. The last two years have been a nightmare. We go through episodes of extreme insulin resistance, which comes on suddenly. My daughter usually takes about 38 units of Lantus per day and is on a two unit correction for every 50 mg/dl [2.8 mmol/L] over 100 mg/dl [5.6 mmol/L] and two units for every 10 grams of carbohydrates. She's 14 years old and weighs 120 pounds. Suddenly, she wakes up over 500 mg/dl [27.8 mmol/L] in the morning and we double her Lantus (doesn't really help) and give her shots of 40 units of NovoLog at a time (which barely brings her blood sugar down.) I have given her 100 units of NovoLog before that has only dropped her blood sugar 100 mg/dl [5.6 mmol/L]. When this started, I contacted her doctor/nurse daily. We switched pharmacies and switched insulin. Her nurse said just to keep increasing the insulin. The doctors don't believe me and don't listen. Her blood sugars, without food, can spike from 150 mg/dl [8.3 mmol/L] to 500 mg/dl [27.8 mmol/L] in an hour during these times. The school nurse is willing to testify to the fact she takes her shots, takes huge corrections and that they don't work. She ends up taking huge shots every two to three hours, yet the situation steadily gets worse. Why does this happen? It seems to start usually at the end of her period but not always. Once when it happened, she grew an inch in two weeks.
Now, the really crazy part. The only thing that fixes her and switches her over to a normal insulin routine is driving to Denver. I used to think is was because I'd get new vials of insulin from Barbara Davis or another pharmacy but found she would suddenly regulate on the old insulin. The doctors don't listen because by the time we get to our appointment, things are all better and her blood sugars are bottoming out. Now, when things go bad, we drive to Denver and stay the night and she's fixed by morning but insulin resistant episodes still come, sometimes every month and other times, up to four months apart. We live at 6000 feet, drive to over 10000 feet and then go down to 5000 feet in Denver. It takes us about two hours to get there and I usually see results within four hours of arriving in Denver. When your doctors don't listen, where do you go for help? They've accused her of replacing all her insulin with saline solution. I watch her take her shots and pinch her arm for her. I load the needles and pop the tops of fresh vials. I'm looking for answers. Any help would be appreciated. Could she have PCOS or is there something else that would cause this type of insulin resistance?
Your story certainly is wild and I won't claim to have THE answer, but I am intrigued by the Denver Cure that you've found.
Forgive me, but I doubt it has to do with anything so exotic as altitude (although that can affect some glucose monitors). And, I don't doubt that your school nurse will swear that the girl gives her doses of insulin.
When I hear such frustrating stories from parents regarding their teen's weird glycemic swings from severe insulin resistance to super lows, I commonly ask that we get back to the basics. Too often I have heard of families who say something similar to what you relayed that the child had an easy honeymoon with the child diagnosed a few years before puberty and then WHAMMO, with puberty, the child's control is out of control. Often, there is the added nuance that the family moved or lost touch with their diabetes team. ALMOST always, there is something that the parent is missing and/or the teen is being creatively more manipulative than the parent would ever have imagined. Sometimes the truth is really an awakening.
I find too often, that on careful review of circumstances, the family recognizes that during the honeymoon, the patient and parents were more lax than they had realized: the child becomes more in-charge of the diabetes and meal planning is a little off. Carbohydrate counting skills aren't really that good. And, then, the child becomes pubertal and they desire some independence and the parents are happy to pass on some of the daily grind of diabetes responsibility to the child. Then, the you-know-what hits the fan.
Could your daughter have PCOS? Perhaps. I haven't seen her but your story doesn't really sound like this. Can her menstrual periods affect glucose control? Absolutely, and, on super rare occasions, this has been associated with ketoacidosis on a "recurring" basis.
But when you notice that massive increases in Lantus don't fix what you are seeing, it tells me that I am unsure you recognize how the various insulins work. Lantus, as you should know, is a very long lasting insulin that has little, if any immediate or "peaking" effect. With that in mind, you should not be surprised that with super high glucoses NOW, you don't see any effect later in the day.
Nowhere in your letter did I see how often and under what circumstances you check for ketones. Ketones in the blood stream provide some inherently increase in insulin resistance.
I suspect that your daughter's curious cures in Denver are more related to her anticipation of doing something "fun," if you were going to Denver for shopping or entertainment, or anticipation of "fear" that the medical staff there will chastise her or you or hospitalize her. How often has your daughter had such poor control when there was a special event in which she wanted to participate?
So, my simple advice is to go back to the very basics. YOU give ALL insulin injections. YOU count ALL the carbohydrates and dose the insulin accordingly. YOU check the glucose meter and do the blood testing. YOU check for her ketones when the glucose is over 240 mg/dl [13.3 mmol/L]. DO NOT JUST "TELL HER." DO NOT JUST "WATCH HER." YOU DO IT ALL, just like was likely done when she was first diagnosed in Florida, for a couple of weeks.
If, during those weeks you don't notice any improvement (I pointedly did NOT say "normal glucoses"), then it may be time to look for something odd and I think THAT would best be done by hospitalization.
Common things happen commonly and it is very common for there to also be some underlying emotional concerns - latent anger or depression over the diagnosis, family tensions, a change in the family dynamic. Keep an open mind while you try to get to the root.
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