10 yr old daughter spikes to 500+ every night, thoughts?

How about rather than aiming for a BG of 100, try aiming for 150 or so tonight and tomorrow night? If she goes below 150, treat her back up to 150. That's your target. Maybe this will shed some light on rebounding.

 

Sounds like you are really on top of things. Nice! (Feeling a little slackerish, myself.)

Do you bolus for all the food, including snacks? (not counting correction food)

Do you think you could do a basal test during the day? Maybe on a Saturday, let her sleep in and eat free food for most of the day to test out where your daytime basals stand? If you hadn't already said you tried lowering all her basals I might think she is getting too much all day long but a basal test might still be worth it.

Though we have not seen spikes like you are seeing, my younger went through a stage where she would need a lot a insulin in the evening for a few days and then suddenly almost none. She even had supper with no bolus a few times. It was unnerving and we just had to be reactive instead of proactive because there was no rhyme or reason. Luckily it didn't last long.

(I also agree about using "score")

 

This does seem alarming. I'm 5'8" and a healthy weight for me is around 150 with my body type. My sister's thin as a rail but 5'4" and she's about 100lbs ( wayyy too skinny I think)

My daughter has snuck food too. Mainly in the morning before I'm up. Sitting there wondering why she's 350 and then I see pizza crust in the garbage

Just about 2 weeks we had a false high because she had had apples beforehand and didn't wash hands.

Yes, in fact, what came to mind was graves to me. A friend of mine's daughter was just dxd with it. They thought she was just growing too quickly and losing weight as a result of getting taller. Thyroid's have a lot to do with hormones so, OP, you really should rule out other issues here.

 

I find that this, while it happens, is not the case when you factor in the type of food, how much you prebolused, etc. Like, when my daughter has breakfast, we do a 20 min prebolus and she has a low GI breakfast and she is back to her pre breakfast BG within about 1.5 hours.

 

This is your situation, which is unusual because of the food and the Apidra. I was not talking about your situation. For most people (who use Novolog or Humalog, and eat standard breakfasts) my comment applies.

The OP did not indicate that they were into low-GI foods or using Apidra, but we can wait to hear if either applies.

 

I'm sure I'm not the only one in my situation so I was talking about 'in general'. Obviously I realize I talk alot about lower GI and carb options and that probably gets pretty annoying but it's helped us alot and if I can give someone else the same advice, and have it help them, I'll talk about it til the cows come home...I have actually stumbled across blogs, Q&As and things like that in which people who have t1 have been very close to their pre-meal BG 2 hours after. One did a chart as well. I remember it so clearly because it made me pretty jealous (and mad) especially at a time when I was having a pretty hard time with getting control over spikes on humalog. These are mostly young to middle aged adults though so that could factor in greatly.

I also didn't even know about apidra until this site and it was pretty aggravating that after 3.5 years of complaining about spikes, none of the endos she's seen has offered that as a solution. So, I think putting it out there as an option to people who might not know about it, is helpful.

What would be a standard breakfast?

 

First, I am really sorry this is happening to you and your daughter, which has a huge impact on both of your qualities of life.

Are you sure that she is not disconnecting her pump (such as in the middle of the night)? Or engaging in other eating disorder-related behaviors?

I do not want to go there, but I think you need to be aware of this. The faster treatment is initiated aggressively, usually the better the outcome.

If she is having 500+ mg/dL readings almost every single night, I would be very concerned, especially in a female at that age.

I would consider using Lantus (full time untethered) / Levemir (untethered overnight), in combination with a CGM to make sure that this is not happening. I would even consider keeping the insulin locked up.

If this is actually suspected, I recommend you talk to an endo and get her into counseling immediately.

EDIT: I have a medical condition that causes gastrointestinal problems frequently in femaies, causing weight loss and chronic nausea and vomiting. Many females with this disorder are wrongly accused of eating disorders, but honestly, there is no reason not to keep in mind that eating disorders and body perception issues are common with females with type 1 diabetes.

http://www.something-fishy.org/isf/diabetes.php

 

I stand by what I said. Your situation is unusual. It's not annoying, but it is uncommon and is unlikely to be applicable to the OP's situation.

I think right now there is merit in staying pretty focussed on the OP's issue. :cwds:

 

I don't know if this comment will be as helpful as some others, but it's something to consider. (My CDE talked about when we did pump training, I don't know why, since I have a boy, lol).

Do some fluctuations coincide with her monthly cycle? Our CDE said that there is a feature where you can set different basal programs and switch back and forth. This feature was designed for people who have recurring changes in basal needs, for instance people who have drastically different habits on weekends, or for women who menstruate and have different basal/carb ratio needs based on where they are in their cycle.

So I realize that with it happening every night it's probably not the only factor involved, but it might help some.

What are her carb ratios? Perhaps she needs less insulin for dinner? Lowering her dinner insulin seems too easy...but maybe it would help, if she's rebounding from lows after dinner. But honestly, it doesn't sound like that to me, because it happens at different times, based on when she goes to bed, not when/what she eats.

My only other suggestion is what others have said--get the CGM and see what it tells you. It will either help you figure out what's happening, or at least let you see the spike coming and know when to give her more insulin.


I just had another thought. What if you try an extended bolus as she is going to bed? It would take some experimenting to get the timing/amount just right. Try to figure out how long after she slows down the spike happens, and how much insulin she usually needs. I know you can set the pump to give insulin over time. That way she gets the insulin based on when she goes to bed, not time of day (like basal). I hope that makes sense. I'm not sure how to explain what I mean.

Our endo will communicate through email, and we can call him any time, day or night. It seems it's not feasible for you to have an office visit more often than every 3 months, but they should have open communication in between visits. A useful feature of MiniMed's website is carelink. You can upload pump data and allow your endo to see it on their end. (I am assuming you already know this, but wanted to put it out there anyway, just in case.) Your doctor should be there for you when you need him/her, not only every 3 months. Because you're right--things like this can't be resolved within a 15 minute office visit.

Wish I could be more help! Good luck with figuring it out.

 

Am I the only one thinking that it is impossible to go from 100 to 500 in 15 minutes without the liver or muscles releasing glucose into blood? I just don't see how it is possible for excess carbs or a lack of insulin to result in a spike that quickly. I certainly have never seen anything like it....

 

I never have either, even if I consumed vast amounts of carbs and disconnected my pump. That's why I questioned if it could be false highs.

 

a rebound from a hard low will do it - although I'm not sure if the 15 minutes claim is based on measurement or something else

 

Yes, and I agree with you.

I have never seen that happen. It makes me wonder if the child is testing her blood sugar properly (not adulterating the sample--I want to keep this appropriate if there are CWD reading).

 

You want to see that sort of response? Take a young person who hasn't had diabetes for all too long (so their body's natural defences against lows are still strong), and give them enough insulin to take them down into a hard low for sure. No one does this on purpose, but in hindsight it can become clear this is what has happened. If you catch the rebound with a CGM or by testing it's astonishing.

It happens.

 

Hi, I'm sorry things are so frustrating for your family right now. I know how that feels. I'm not a medical professional by any means but I am the parent of a CWD who has multiple other diagnosis' that complicate blood glucose management. All I want to suggest is; maybe something else is going on to complicate your situation. There are a number of growth disorders; marfan syndrome comes to mind. Not to mention there are lots of tricky co-morbid conditions linked to type one that can affect blood glucose control. I'm not saying that that's what's going on here but I'm sure it can't hurt to ask your endo if she can be screened for the common ones and if any others come to your endo's mind considering your daughter's height, weight and medical history. I hate to think a simple missed diagnosis may be keeping you all in turmoil during the night. Good luck.

 

WE DID NOT SPIKE LAST NIGHT!!!!!!

So, I took the concept of the rebound theory back to a couple of the nurses we work with, and did more research yesterday morning myself. As incredible as this sounds, all the advise I have received to date has been basically find more ways to get her more insulin. if she goes higher, she needs more insulin, makes sense right? The nurses kept telling me increase it at dinner, increase the basal at night, be more aggressive. We got away from the basics, and I think I created a time bomb, and it started going off during the day as well. Until I reached out to the board I was not aware these spikes could be caused by the body from insulin overload per se. The 41 to 530 at school was a real eye opener, that shocked us all. The more I looked at the data the more we realized often she was running way too low before the spikes, and we were often pumping carbs into her. So we agreed to blow everything up and start over - back to the basics.

So we brought her home from school yesterday, shut off all carbs after lunch and began testing. We quickly found a pretty good rate for the afternoon that held the flat line (.4) but we needed to increase it around 7:30 as she went up on her own (.55) then again around 10 (.8). That was the only time we saw any type of major movement, she went from maybe 230 - 280 range, but I had expected some movement at night as I already knew .825 was a pretty good rate at night. We then tested every 90 minutes all night, and then again this morning, while not giving her carbs. Incredibly we did not spike, and never fluctuated more than 50 points in any hour (the 10:00 pop was the biggest jump) We literally saw no spikes for the first time in 3 months. The (.4) rate seemed to work again this morning, so for now I am going to use those numbers.

At lunch time today I let her have 60 carbs. We did a 15-1 ratio, and will test her every 90 minutes this afternoon. I am hopeful that we have a good day, she is back in range by 3-4 hours, and that we get no spikes tonight. the game plan is lunch at 11:30 as usual, 12-15 carb snack as needed around 3:00, then 45 carb dinner at 5:30 with 3 units. If we see no spike tonight, then I know it was just the management plan that had gone hay wire, we just needed to get back better basal rates, etc.

Thank you so much to all who have chimed in. I promise to update again over the weekend, but the fact we did not spike last night is incredibly promising. Hoping for better news tonight!, and I hope this provided a conversation that others can learn from as well!

 

My son can have spikes like that at night. Maybe not in 15 minutes, but can definitely go from 100 to 500 in under an hour, without some aggressive proactive measures ie. tons of insulin. I would test him in that first hour of sleep and just be in utter disbelief at how quickly and fast his bg could climb.

It happens most nights for us but not every night, which make it all that more frustrating.

These are some of the things that help combat my son's night time spike:

1. No carbs 2 hours before sleep.
2. Increased basal rate the 1 hour before sleep (however if he is active in this hour it can send him low).
3. Bedtime basal rate goes up 400% (no kidding) for the first hour of sleep. Sometimes when the spikes have been really bad, I will also do a bolus as well as soon as he goes to sleep.
4. I try to not treat anything above 70 if it is right before sleep (because the spike is coming). If he is lower than 65, I treat very conservatively with maybe 5 grams.
5. And the thing that has helped the MOST is an increased daytime basal rate. Despite usually good numbers during the day, if I am seeing those uncontrollable spikes at night than I increase daytime basal. Sounds backwards but it works. It seems like if he has more insulin working for him throughout the day, it keeps that night time spike at bay.

Good luck! So frustrating!

 

YAY!!

Hope it continues!! KUP!

 

I am hopeful for you starting over.
We had a real tough start after a month of pumping with Isaac rebounding, his endo team kept saying to increase basals, ISF, etc. I just felt very hesitant and instead for two days I did checks every 30 minutes over night, sounds crazy but after your 20 month old has a seizure caused by low BG you will do anything, and low and behold twice each night he had low BG, low as in below 60's and just 30 min after previous checks that were in range. He had been rebounding, and instead of increasing his basal we needed to drastically decrease them. Still to this day,almost 4 yrs later, his 2am basal is the lowest of all his basals and it stays that way until 6:30 am (2hrs before his breakfast).
So, keep at it don't give up and question whenever you see those crazy spikes. I think by other folks on here making me aware of rebounding, how it works and how to stop it we have been able to help Isaac maintain some insulin production as his TDD is still relatively low for his weight.
Anyhow, good luck HTH

 

Excellent news that things seem back on track - thanks for sharing! :cwds: