Diabetes Support - Type 1 Diabetes-Questions-please help




ronni62
06-30-2014, 01:02 PM
Hi, I'm really hoping someone out there has dealt with Type 1 diabetes and can help with some questions and tips.

My son's girlfriend (age 16) has type 1 and is having a lot of problems controlling her blood sugar swings. She frequently becomes very low and comes near passing out. Night time is a problem, as well. She is taking a slow-acting insulin at bedtime, but frequently wakes up in the middle of the night with her blood sugar so low that she can not move, speak, or see, and has to somehow get to her juice or sugar pill to try to bring herself back out of it. Is this common? And, how do type 1 diabetics normally handle this? Do all Type 2 diabetics use a slow-acting insulin at night and why? If they're not eating while sleeping, why do they have to take insulin at bedtime?

Our son brought her home for the day a couple weeks ago and, apparently, she had taken her morning insulin but not eaten and she was almost unconscious before she got here. We gave her OJ and a banana and she had to lay down for about an hour before it kicked in and brought her out of it. We were (and still are) very worried about the lack of control over the dips in her sugar levels. Not sure how often she gets too high.

She does some blood sugar monitoring, because she talks about her fingers hurting from the sticks, but, I think she mostly tends to guess about how many carbs she eats and then injects the insulin. She was diagnosed at age 8, so I guess I'm a little surprised that there are still so many ups and downs. She is an active teen, playing softball, etc, on the high school team, plus other activities at church, etc. And, as a typical teen, she likes french fries, pasta, mac & cheese, etc, but eats very small portions. She does not need to lose weight at all, either.

She does see her doctor regularly, but he seems to have no tips to help her with this, just tells her her A1C is too high and to get better control. Yeah, she knows that, but isn't figuring out how to get the balance right.

If anyone has experience with this and can help, I really appreciate it.


Amygdala
06-30-2014, 02:39 PM
That doesn't sound good at all. She needs to be adequately educated about her disease and how to manage it. Diabetics need to monitor their blood sugar levels and keep track of their carbohydrate intake. No guessing, no skipping. If she is physically active, she needs to measure her blood sugar before and after exercise. Those nightly blood sugar lows are extremely, extremely dangerous! It sounds like she is close to hypoglycemic coma. It could be that the dose of her bedtime insulin is too high and needs to be adapted. She needs to see a doctor specialized in diabetes. And she needs to take part in some disease management program for diabetics. I don't know how things are in the US, in Germany the GP would make sure this happens. She cannot be expected to figure things out on her own. And she needs to realize what consequences she will be facing down the road if she doesn't keep control over her blood sugar levels. It happens that teenagers (or adults) deny their diabetes, because they feel overwhelmed by the lifestyle change it involves. It really requires a lot of discipline.

Psychic
06-30-2014, 09:02 PM
My long-term boyfriend is a type 1 diabetic and much of my family is type 2. Type 1 diabetes is a lot more difficult to manage. Even when they do everything right, they can still have sudden highs and lows. These can be brought on by stress, exercise or simply nothing at all.

However, it does sound as if she needs to find a new doctor. Specifically, one that specializes in diabetic care. She should also take some of the free seminars offered at a local hospital on managing her diabetes. It sounds as if she may not be very well informed.

It would be a good idea for your son to keep some glucose tablets or gel with him at all times. You can find these at any pharmacy in the diabetic care section. The gels are very useful for when a diabetic is completely incoherent and not responding.

There have been a few times when my boyfriend has woken me up in the middle of the night during a sugar low. He starts having convulsions and its usually the movement that wakes me up. I hurry and squeeze some fast-acting glucose gel in his mouth and then run downstairs for some juice or sugar-water. Once he's starts to become coherent again, I usually have him eat something with complex carbs, such as whole grain bread and jelly or some multigrain crackers. Complex carbs take longer to break down and will help keep the blood sugar level instead of spiking it.

Any time a diabetic has a low, do not give them protein. Protein slows the absorption of glucose, so it takes longer for their blood sugar to get back to normal.

Another useful tip for her would be to use MFP to monitor carbs. My boyfriend does that when he eats a meal instead of estimating. This has helped him a lot.


ronni62
07-01-2014, 12:40 PM
Thank you both for the info...I will definitely talk to her about all of this. My son does carry glucose tablets for her, but he's not with her at night, so it's up to her family to, hopefully, hear if she's in trouble. I definitely agree that something's wrong with the night dosage of insulin.

Thanks, again!

MauiKai
07-01-2014, 01:11 PM
Sounds like her parents need to step in and actually PARENT her. She needs to learn to be responsible for herself, regardless of what foods she prefers. She won't do well as an adult if she doesn't get a hold on it now. Also, your question would probably do better in the diabetes forum on 3FC.

kirsteng
07-01-2014, 08:18 PM
My son has Type 1. He is now 5, diagnosed at age 3 1/2. It is the most difficult disease of childhood to manage, as there is no fixed dosage, and everything is dependent on not only food, but also exercise, mood, weather, illness and a host of other variables.

Low blood sugar at night is a serious problem. My first suggestion is for her to get a cgm (continuous glucose monitor) which is a small device which is inserted into the interstitial space and monitors blood glucose every 5 minutes 24 hours a day. It alarms at preset levels, day or night. So people with type 1 can actually go to sleep, knowing that the alarm will wake them up if their blood glucose falls below a certain level. We use the Dexcom G4, which IMO is the absolute best on the market. In the US it is covered by most extended insurance policies.

Type 1 in adolescence is at its most difficult, so be understanding and supportive. This girl has a LOT on her plate. Suggest the best technology (pump plus cgm) then leave it to her. My heart goes out to her, your son, as well as you - this is not a disease that anyone asks for, and is NOT easy to manage. It never lets up. Anything you can do to provide support to her can only help.

ronni62
07-04-2014, 10:02 PM
Thanks for the info!

One more question for you all....Do Type 1 diabetics need to track total carbs or just net carbs like we do on Atkins? I'm wondering if that's what's causing her to overdose on the insulin as her doc has never mentioned net carbs to her.

Wannabehealthy
07-05-2014, 12:32 AM
I just happened to see this thread. I am type 2 and I post in the Diabetes Monthly Chat. No one who posts there is type 1, so I doubt if anyone there could give you better information than these people who have posted who have some experience with it in their family.

Do you know her parents? Could you talk to them about this? This is very serious. Maybe they don't realize that she's not taking proper care of her disease. She probably should see an endocrinologist who specializes in diabetes and possibly attend a class or see a diabetes educator. Since she is a minor, her parents would have to take care of making these appointments and they should be educated about it also she they can give her guidance and make sure she is doing what she should be doing. It's possible that they did all this for her when she was younger and just assume that she is continuing on with it, which she is not. Also, there is the fact that you said she does not need to lose weight. Insulin tends to make you gain weight. Many diabetics play games with their insulin to keep their weight down. That's very dangerous. She can have a very full and active life, but she needs to learn to take care of herself.

kirsteng
07-06-2014, 10:58 AM
Type 1's have to count net carbs - total carbs minus fiber. They are given a ratio of how much insulin to how many carbs (ie 1 unit: 20g carbs), and then should total up the meal and inject accordingly before they eat.

In reality though there is often some guesswork involved, when eating out, or at others' houses. That's okay too - they tend to get pretty good at estimating carbs. But of course it's a very fine balance, and the smallest of mistakes will result in either high or low blood sugar. It happens pretty often for type 1's and is very hard to avoid, as (unlike type 2's), they have no pancreatic function so no margin for error. That's why I suggested the cgm - this girl would REALLY benefit from being able to see her blood sugar at all times, in real time. She could drink a few sips of juice before her blood sugar actually went too low to head it off - it's such a great tool. Saves a ton of finger sticks as well.. we went from 12 a day with my son to 2 or 3 now.

I missed your question regarding nighttime long acting insulin on my last post. Type 1's need background insulin all the time. In healthy people, our pancreas produces a slow trickle of insulin all the time, as our liver is releasing stored glucose regularly into our bloodstream. Without a background insulin, and even without eating anything, type 1's would have very high blood sugar within a couple of hours. That's why she takes it at night. But the problem is that many of these insulins still have a bit of a peak, so can result in low blood sugar in the night. The one with the flattest profile (ie almost no peak) is Lantus. Levemir has a bigger peak, and NPH a huge one. But even if she's taking Lantus, low blood sugar is common overnight as the body sometimes has a delayed response to exercise, resulting in overnight lows. You said she was active and plays a lot of sports - it would be really helpful for her to be on a pump, which allows you to set the rate of the trickle of background insulin multiple times per day. My son has 9 different rates per day - with the lowest by far being from midnight to 4am. If he was getting a steady flow of insulin at that time, he would end up low every single night.

To me it doesn't necessarily sound like she's mismanaging her disease - it is a VERY difficult disease to manage, even with all the tools at your disposal. I think she would really see her control improve dramatically with a pump and cgm though.

ronni62
07-06-2014, 03:52 PM
Type 1's have to count net carbs - total carbs minus fiber. They are given a ratio of how much insulin to how many carbs (ie 1 unit: 20g carbs), and then should total up the meal and inject accordingly before they eat.

In reality though there is often some guesswork involved, when eating out, or at others' houses. That's okay too - they tend to get pretty good at estimating carbs. But of course it's a very fine balance, and the smallest of mistakes will result in either high or low blood sugar. It happens pretty often for type 1's and is very hard to avoid, as (unlike type 2's), they have no pancreatic function so no margin for error. That's why I suggested the cgm - this girl would REALLY benefit from being able to see her blood sugar at all times, in real time. She could drink a few sips of juice before her blood sugar actually went too low to head it off - it's such a great tool. Saves a ton of finger sticks as well.. we went from 12 a day with my son to 2 or 3 now.

I missed your question regarding nighttime long acting insulin on my last post. Type 1's need background insulin all the time. In healthy people, our pancreas produces a slow trickle of insulin all the time, as our liver is releasing stored glucose regularly into our bloodstream. Without a background insulin, and even without eating anything, type 1's would have very high blood sugar within a couple of hours. That's why she takes it at night. But the problem is that many of these insulins still have a bit of a peak, so can result in low blood sugar in the night. The one with the flattest profile (ie almost no peak) is Lantus. Levemir has a bigger peak, and NPH a huge one. But even if she's taking Lantus, low blood sugar is common overnight as the body sometimes has a delayed response to exercise, resulting in overnight lows. You said she was active and plays a lot of sports - it would be really helpful for her to be on a pump, which allows you to set the rate of the trickle of background insulin multiple times per day. My son has 9 different rates per day - with the lowest by far being from midnight to 4am. If he was getting a steady flow of insulin at that time, he would end up low every single night.

To me it doesn't necessarily sound like she's mismanaging her disease - it is a VERY difficult disease to manage, even with all the tools at your disposal. I think she would really see her control improve dramatically with a pump and cgm though.


Thank you so much, again! And, thanks to everyone else who's replied. The major thing I see is that her doctor has her counting total carbs all the time. She had no idea that some of the carbs are not broken down by the body, so don't need to be accounted for. I'm not sure why she hasn't gotten the cgm or a pump, but I do know her insurance has been a problem-they won't pay for the glucose gel (hence, the mountain dew by her bedside every night) and they argue about paying for her insulin pen. They want her to have to carry vials and needles instead (not smart in a high school environment). I'm encouraging her to ask her mom about finding a new doctor. She's such a sweet girl and doesn't deserve a doc who won't educate her with the facts.

Thank you all again! I'll keep checking back for any other hints anyone can think of. Your help is soooooo much appreciated!