Afraid child will die at night of hypoglycemia

[WendyJB]

I'm new to this disease and forum and it really bothers me to not have a clear picture of what to expect in the middle of the night if my son gets very low.  How will I know?  Will he wake up?  Will I find him unconscious in the morning when I go in.  This is honestly a real fear for both my husband and I and we do not think it has been addressed well by our MD or in the books we have been given.  

[Forum-VOL-LS]

Hello again, Wendy -
Your fear is shared by every parent of a diabetic child.  Truth is, normally when our blood sugars drop too low, our liver will dump glucose into our blood stream to raise it.  So, all diabetics have a built-in safety valve that protects us from all but the most rare of situations.  Each time our liver 'dumps' glucose, it takes a few good meals and some time for our livers to rebuild the storehouse for the next time.  It's always important to watch carefully after a 'serious low' to make sure to avoid another one.  Many parents have chosen to take turns waking up during the night to test their child -- a test that most munchkins soon sleep thru.

With practice seeing how your son behaves when low during the day, with your growing intuition about his behaviors related to diabetes, and with patterns you'll detect about foods and activity and how his blood sugar rises or falls, you'll likely catch a low before it will be dangerous.

If your son is not being followed by a pediatric endocrinologist, make sure you get a referral to one.  Also ask for a referral to a certified diabetes educator (CDE) -- who works with endo's and is a great help on the daily rigors, trials & tribulations, and tips 'n' tricks to manage this disease.  

You should talk to your endo about a Rx for Glucagon.  It is an essential to have on hand.  Most of us never use our Rx and just get it refilled when it expires.  Glucagon is used to treat a low (by injection) if we are unable to swallow.  You & your hubby should be trained how to give that injection (similar to insulin, but you'll need to inject a liquid into a vial with tablet in it ... and then inject the mixture if your son ever needs it).  It's good to practice on an orange so if you ever need to do it, you'll not be reading the instructions under stress.  Of course, whenever one needs a glucagon shot, it's important to call 911 also.  Glucagon causes one's liver to dump a lot of glucose into our blood stream to raise a low ... much more that our liver would 'choose' to do itself in response to a low.  

So, perhaps if you & your hubby take turns getting up every few hours (yes, it's tiresome and yet the alternative is no sleep due to worry) to test your boy, you'll know that he will be well watched over.

It's also a good idea to keep a notebook that you, your hubby, and any other adult who takes care of your son -- writes in every day:  every shot (dose, type, time, physical location on his body), every meal, every snack, every unusual level of activity, every sickness, and every blood test result.  Why?  The notebook will become your communication backup if you forget to tell one another that, for example, your son had some cookies, or you gave him his shot early for some reason, or that the kids were swimming for 2 hours in the afternoon.  

That notebook becomes a FABULOUS tool for troubleshooting and finding patterns.  You might discover that whenever he has a certain food, his blood sugar seems to run higher/lower than you'd expected.  Discovering that pattern can help you all get the dosing right.

Dearest mom & dad, do visit the JDRF Online Diabetes Support Team site, too -- and you'll soon get connected to folks who're physically closer to you (if you'd like) so that you can share experiences and enjoy the warm support of others who are further along.

Of course, we're always here to answer generic questions, too.

[Annalise]

My son, who just turned 10, was diagnosed almost 4 years ago.  My husband and I routinely test him during the night.  This was because one time a few years ago, he just happened to be sleeping in our bed.  His blood sugar plunged and he started having a seizure.  My son's endo completely disagrees with our nighttime testing, but it gives me a lot of peace of mind and I actually sleep better.  My son did switch to Levemir for his nighttime insulin shot and his numbers have been much more stable. You're going through a lot right now.  I would say to listen to your instinct and go from there.  You know your child better than anyone, and you'll figure out all the complexities of this disease and how your son reacts to all the variables.

[quatlox]

Wendy,

Please test your son's blood sugar before going to bed and make sure he eats a snack before going to bed.  I will not go to bed unless my bloodsugar is at least 160.  Yes, I know that is high, but I wake up every morning between 80 -  120.

The Dead In Bed syndrome is very real and can happen when least expected.  I know, I have been there.  If it was'nt for my wife calling 911 to help me, I would be dead today because of night time and afternoon lows.

I once fell asleep on the couch in the middle of the afternoon, My wife tried to wake me for dinner and I could not be wakened.  She called the paramedics and they shot me full of Glucose.  I came to, but I think I lost some very needed brain cells. (I don't trust the liver and it's glucagen keeping me alive as too many people have died from lows)

Check your son's BS regular and make sure he has some form of glucose on him at all times.  I carry Smarties with me everywhere I go, they are small and contain glucose.  Just make sure your son understands that this is not candy to be eaten any time or to be shared whith his friends and that it is for his LOW blood sugar.

I know you are going throu some trying times, but if you monitor his BS regular he will be fine.  I check my BS from 3 to 8 time a day and very rarely have a low that I am not aware of, as I don't feel the LOWS.

Hang in there it will get better, but make sure he is very aware of the fact that he can and will go low trying to keep his blood sugar as close to normal as possible.

Bob

[JDRF-VOL-SG]

I believe that you have some excellent advice from the first two postings. The third posting is making some comments from his own experience, but he is an adult, and an adult who seems to suffer from loss of warning symptoms. Your child probably does not have that problem. Hypo unawareness prevents the brain from telling the liver to dump its emergency stores of sugars -- this is why it is so dangerous.

Studies have shown that you can keep your child's warning symptoms working properly and you can actually RECOVER warning symptoms if you do several things. Some of this is addressed in the first excellent response. But in a nutshell, this is the advice given by folks who have written reports on studies of hypo unawareness:
1. If your child is very low, always give the very quickest-digested "fix" possible, which is gatorade or juice. Save cookies or crackers for mild lows that are near normal. It is important to repair the glucose levels as a rule BEFORE the brain has time to tell the liver to dump its emergency sugars in order to keep the glucose warnings working properly.
2. If your child has a few lows, it is important to work hard to prevent lows for a few days so that any emergency sugars that the liver has dumped to dissipate. If too many lows happen close together and the liver's action is called upon too often, the warning symptoms can be temporarily damaged.


In any event, your child probably does not have hypo unawareness, so if he is low at night while he is asleep, he probably will wake up. If he is old enough to pop open a juice can, I would keep a small 6-oz. juice can by his bed. If he wakes up low, he can pop one of these cans and drink it much easier than the juice boxes with the straws.

And I totally agree with the first posting about keeping a glucagon kit handy. If you WERE to find him unable to swallow or semi-conscious, you can use this to help him while you call 911. My husband has used it before on me (I am the diabetic in the family) and it works wonderfully well. It works even more on a child than on an adult, so it can be a real life-saver. Most people will eventually start to moan or make noises if dangerously low, so if your room is near your child's, you probably would hear noises of distress if he dropped dangerously low. Then the glucagon is there for you to help him, and all is well.

Don't be worried -- be prepared. And all will be OK.

[ashley_dawn]

Wendy,
Concern and caution is always a good thing when it comes to diabetes. I've had diabetes for almost 15 years (since I was 13) and have had a number of lows over the years, including at night. Although I have developed a mild amount of hypoglycemic unawareness in the last few years, I used to have a pretty strong reaction when my blood sugar would suddenly drop while I slept.

This is my personal experience, but the body can be it's own monitoring device. When my blood sugars used to drop while I was asleep (to the 30s-50s) I would always have a nightmare or something would wake me up. I would wake up covered in sweat and would realize immediately that my blood sugar was low and I needed something. I don't know how old your child is, or if he will have the same type of reaction, but you can definitely about all the different variations on hypoglycemic symptoms...... shaky hands, wobbly in the legs, headache, blurred or fuzzy vision, feeling distracted or unfocused, body sweats, etc......

You can also ask your endocrinologist about ordering a continuous glucose monitoring system for him to wear overnight or if they have a trial one that can be tested. My endo signed me up to wear one which recorded all of my blood sugars over a 3 day period and at the end of that time I returned the device and the readings were downloaded. This allowed both my doctor and me to know my blood sugar trends over the course of a 24 hour day. There is also a continuous monitoring system that can be bought from Minimed (I think) that you can look into trying out. these are expensive (not covered by most insurance co.) and not 100% accurate, but it could be something to look into if it will help you all feel better about what is happening to your child's blood sugars.

Hope this helps some & best wishes!!!

[Arkie Mom]

Wendy,
    My daughter was diagnosed with type 1 at 17 months old, she is 11 now. Night-time lows were the most scary times for my  husband and me. I am not really sure how it happens, but for her,  she wouldnt really wake up, we had a monitor in her room for several years and could hear her start thrashing around then she would let out the worst blood curdling scream that would last until we could get her glucose raised. We would try using syrup or honey(pouring it down her throat, as she wouldnt wake up), before using the emergency glucagon kit. But after a few minutes we never hesitated to use it. My daughters body was extreamly sensitive to regular insulin. So doing night blood checks is a must at first(around 2 or 3 A.M.), then a few nights a week should be fine. After 10 years we finally do a 2 A.M. check only once a week, unless she is sick. As a parent, you probably think a good nights sleep will never come, but hang in there- it will. Everything will eventually become routine.