Our daughter, 15, was diagnosed over two years ago in the worst possible way: severe DKA that lead to brain edema and coma. Since then, her health, though with many setbacks (severe kidney infection from initial hospitalization requiring another hospitalization, thirteen stomach ulcers, additional diagnosis of Postural Orthostatic Tachycardia Syndrome, severely weakened immune system for first year after T1 diagnosis, etc.), has improved slowly. She has been on pump with integrated CGM for over a year now, and had a “honeymoon” period of around eighteen months after diagnosis. Her A1cs have not (yet) ever been above 7.
Our situation is this: since October of last year, her numbers have been extremely erratic, so much so that we have checked her every other hour (CGM primarily but also lots of fingerpokes) every night. She has gone down into the low 20s a handful of times in the middle of the night, which is of course so scary. Her endocrinologist says, based on her insulin amounts, that she has pretty much lost whatever pancreatic function she had left and is therefore officially out of the “honeymoon”. We keep being assured that things will smooth out and become more predictable but they have not, and this has been going on for six month now. We have also been told that “brittle” T1 is mostly a thing of the past, given the technology now available. I am beginning to wonder, though. We need to sleep. And we need to keep our girl safe. Any thoughts? Thank you.
Yes, she is likely out of the honeymoon phase by this point. That’s correct that the term “brittle” is not really used anymore, because frankly all Type 1’s are “brittle”. It is normal, though obviously not desirable, for our BG to be able to fluctuate widely (and wildly) within a matter of minutes. The main issue for your daughter seems to be hypoglycemia unawareness, where she does not get the classic sweaty/shaky symptoms, and that is really tough. The CGM can certainly help with that, but it might also be helpful to consider training a dog (hound breeds seem well-suited to this) to help identify when she is starting to go low, and also to make a log of her symptoms before she goes low (e.g. is she disoriented or confused?) to help identify it sooner.
Your daughter, and you too, have certainly been through way too much; I feel for you.
I agree with Angie that your daughter is most likely beyond the “honeymoon phase” and that she also might have hypo unawareness. I too have times of hypo unawareness that appear and disappear for no apparent reason; for example at times when my BG goes into the 70’s I will feel “low” and at other times, I’ll feel fine and testing reveals that I’m 40 - sometimes lower. I don’t take the meter’s word without retesting with another meter making certain everything is working; with a reading below 60, I always “treat first” and then do retesting.
Brittle can be scary and unpredictable and is a term not generally used, but does exist. I was diagnosed as severe brittle many years ago while hospitalized at Joslin Diabetes Clinic - long before BG meters and while a test subject for what is now referred to as HB A1c. About two years ago the Endo treating me for 15 years [himself T1] once again labeled me as extreme brittle after EMS [first time in well over 50 years] had to awaken me from what was a 10 BG.
That said, during my 59 years T1, I haven’t let diabetes keep me from doing what I want to do - I’ve stayed active, traveled independently, continuously worked [getting “perfect attendance awards” a few times] for more than fifty years and raised a caring family - all encouraging me. Yes, offer your daughter FULL support while keeping a loving and caring eye on her.
Dennis is a pillar of wisdom and experience, and we value him so much! : )
Thank you for your experience and insight. 
Do things smooth out at all once the “honeymoon” is completely over? We have been told that going through the ending part of it that sometimes the pancreas tries to crank out some insulin erratically, like an engine sputtering before it stops, and that this is part of what has been making it so very unpredictable to keep her numbers in range. And if so, how long before we can be sure that the “honeymoon” ending-phase is over? As I said, she has been taking around the average daily dose for her age and weight for at least four months now. It seems like we should be on the other side. So are things probably just going to stay like this?
As for hypoglycemic unawareness - she does seem to mostly know when she is going low while she is awake. But she does not reliably wake up from a low at night. 
An alert dog seems financially out of reach as we still have well over $10,000.00 in medical bills from the past couple of years since her diagnosis. Perhaps by the time she moves out - that is when it will really feel necessary, if things stay like this.
hi @Mayree,
smooth out? no. once you are completely dependent on insulin, you are completely at it’s mercy and I am afraid that there are a lot of roller coaster thrills ahead. 2 problems with staring at a CGM, 1) tendency to overcalibrate, and 2)a tendency to overeat a low or over-medicate a high or a trend that might shoot over her target. Fast insulin is still too slow and hangs out way too long. every change takes hours to take effect, and perfect blood sugar (69-99 mg/dl) is a tiny target at a very very long distance away.
the first year after honeymoon is like learning it all over again. Will you get more proficient and develop a sense of awareness for the food-insulin-exercise triangle? yes, yes you will.
there are tricks that can help, such as not caring exactly what the CGM says but rather, if it is trending up or down, and if so - fast or slow. What are relatively safe bedtime numbers, and what activity comes before those nighttime problems. mixed carb as a night snack is sometimes all you need. as @Dennis and (i think) @angivan will tell you, in the beginning we I didn’t have pumps, CGM or even home blood glucose meters… and we survived.
even at 15, body, hormone changes, and growth wreck havoc with blood sugar control. its a lifetime of insulin-food-checking-learning and there are no vacations but like I said, it’s something you develop a sense for, and eventually you will get more sleep. breathe, take care of yourself, fortify your position with enlisted help, learn, and breathe.
Joe, that is really practical and excellent advice about CGM. Learning to read the data is one thing, but then deciding what needs to be done about the data is a whole other skill set (how much insulin on board, but also how long ago the bolus was given, the composition of the food involved, etc. etc. etc. etc. etc. etc.!!!). Keeping all this in mind. Thanks, everyone.
Joe, really good and practical perspective with regard to CGM. It is one thing to be able to read the data and another to decide what to do with it (especially at two a.m.) How much insulin is active? when was it last given? what was the composition of the food? how active has she been that day? etc.etc.etc.etc.etc. I think some of the nighttime issues stem from this learning curve. And for sure she is not full-grown yet, and that must contribute to the chaos.
The responses here give me hope that we can refine what we are doing further to ameliorate the situation. You folks that have been living with this for so long are heroes to me. Thanks.
My son is 10 and just hit two years since dx’d this March - he has had a LONG honeymoon period and they can last longer, it is very individual/ He also has wild swings. Although the term “brittle” seems to be out of favor the idea of swinging sugars does exist.
I was at the JDRF TYpe One Nation in February. I was working the event and talking with two 20- something adults who are in the JDRF Leadership program, a brother and sister who BOTH have Type 1 (no prior family history), she said her Type 1 is completely different than her bothers, hers fluctuates wildly 12 years post dx., his not much at all. So it is very individualized.
Hormones as someone mentioned, plays a HUGE ROLE, as does when you eat. You have to figure out what foods spike and what don’t, and then of course your child has to be willing to eat those foods. If you set basal rates on days she is eating pizza then go all healthy food, then she is going to need A LOT LESS INSULIN and could be attributing to overnight lows.
My son DROPS overnight still…50-100 points - so know her patterns and adjust pump overnight lower if needed.
The average A1C for teens is about 8.9… so know one is getting to target at this phase in life, for MANY different reason, some physical, some mental (teen brain development), etc., and I say this so you don’t think either one of you are NOT doing a good job, you are, most teens are not on CGM and Pump, for both it is very low rates of adoption, though that is changing as devices are getting better, and you have done that so
that is a great step!
YOu are in good company! Best of luck.
Also, we have Dexcom “Share” CGM, and can see numbers on our IPhone devices… MANY people at the Type One Nation had a Dexcom and all of them said it does not wake them up overnight. I know the IPAD has louder sounds then traditional receiver and our DNE suggested placing receiver in a metal container so it would be louder when it did go off…very high tech! 
Because my son loses at night we try not to have him sleep unless he is about 180-200.