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Diabetes - Juvenile Community
This patient support community is for questions related to juvenile diabetes including celiac disease, depression, diabetic complications, hyperglycemia / diabetic keto-acidosis, hypoglycemia, islet cell transplantation, nutritional issues, parenting a diabetic child, pregnancy, pump therapy, school issues, and teens with diabetes.
Dead in Bed Syndrome
by Wendy's Sister, Aug 15, 2004 12:00AM
Recently my brother in law died, he was a Type 1 diabetic since about 14 years of age. His 3 sons and wife are devastated, as are we.
We recently have heard about something called the "Dead in Bed Syndrome", which seems to occur with Type 1 diabetics in that they seem to lose the ability to recognize the sypmtoms of hypoglycemia.
The night of his death, he ate a snack because his sugars were diving during the night. About an hour later, his wife went to bed and found him taking his last breaths. She tried to revive him with some Glucagon (and CPR) but was not able to get him back. This was not the first time that he had had a severe hypglycemic reaction during the night.
We are totally devastated and have heard that for some people, there seems to be a relationship between the "new" genetically engineered insulins (ie: Humun insulins) and the severe highs and lows in glucose levels. These problems were not happening with my brother in law when he was on the animal based insulin.
We are wondering if there is a correlation and after reading alot of these posts, I have been wondering if perhaps it is the insulin itself that is causing some of the problems.
Apparently the drug companies want to stop making animal based insulins but perhaps animal based insulins should be available to people who aren't able to tolerate the genetically engineered insulins, or at the very least, more research should be done to determine if the insulin itself is at fault.
Do you have any info about "Dead in Bed Syndome"?
Thank you
We recently have heard about something called the "Dead in Bed Syndrome", which seems to occur with Type 1 diabetics in that they seem to lose the ability to recognize the sypmtoms of hypoglycemia.
The night of his death, he ate a snack because his sugars were diving during the night. About an hour later, his wife went to bed and found him taking his last breaths. She tried to revive him with some Glucagon (and CPR) but was not able to get him back. This was not the first time that he had had a severe hypglycemic reaction during the night.
We are totally devastated and have heard that for some people, there seems to be a relationship between the "new" genetically engineered insulins (ie: Humun insulins) and the severe highs and lows in glucose levels. These problems were not happening with my brother in law when he was on the animal based insulin.
We are wondering if there is a correlation and after reading alot of these posts, I have been wondering if perhaps it is the insulin itself that is causing some of the problems.
Apparently the drug companies want to stop making animal based insulins but perhaps animal based insulins should be available to people who aren't able to tolerate the genetically engineered insulins, or at the very least, more research should be done to determine if the insulin itself is at fault.
Do you have any info about "Dead in Bed Syndome"?
Thank you
Doctor's Answer
by JDRF-Team-ES, Aug 15, 2004 12:00AM
Please accept my sincere condolences on the loss of your brother-in-law. I am not a physician and I am not up on all the research, so I can't adequately answer your question about the human insulins causing these severe lows. I have never heard of the "Dead in Bed Syndrome", but that doesn't mean it does not exist. I know that the human insulins do help people to keep their sugars in tighter control and obviously there is a risk to such tight control since blood sugars can drop so quickly. I think the question you ask is a good one and perhaps someone will do this research.
As a Diabetic since age 13, your letter reminds me, once again, how scary diabetes can be, even when you are doing everything you can to take care of yourself. Even with all the medical advances that have been made in the treatment of diabetes, there is still no cure and diabetes can be devastating. Please extend my heartfelt sympathy to the wife and children of your brother-in-law. If I hear of any other research or information related to your question, I will pass it on.
ES
As a Diabetic since age 13, your letter reminds me, once again, how scary diabetes can be, even when you are doing everything you can to take care of yourself. Even with all the medical advances that have been made in the treatment of diabetes, there is still no cure and diabetes can be devastating. Please extend my heartfelt sympathy to the wife and children of your brother-in-law. If I hear of any other research or information related to your question, I will pass it on.
ES
I am posting a couple of sites that talk about the "Dead in Bed Syndrome".
It seems that for some people with Juvenile Diabetes, there is problems related to the human insulins, for others, there doesn't seem to be these same issues. It does however, make it very important to have the animal based insulins available so that people have a choice in treatment. My research has also indicated that Eli Lilly, the makers of Humulin Insulin are going to (or have) stopped producing the Beef and Pork Insulin which is very unfortunate as it takes away that choice.
The coroner's report stated that there were some changes in my brother in laws arteries related to the diabetes, but that he had not had a heart attack. The cause of death was listed as "complications from diabetes".
Here are the links.
http://www.iddtinternational.org/newsletters/newsletteroct2002.htm
http://www.diabetes.org.uk/news/july00/animal.htm
http://www.diabetes.org.uk/news/july00/animal.doc
Or just type "Dead in Bed" into your search engine and this will lead you to some of these links.
I would appreciate hearing from anyone if they have additional information or research about this as it is leaving us very unsettled knowing that perhaps his death could have been prevented if he had been on the animal insulin.
Es
1. if low, the person should take the quickest possible carb to digest rather than eating a snack that takes a long time to get digested, This resolves the lack of carbs in the system BEFORE the body has a chance to send out for emergency liver stores of sugar. So this means drink the juice when low rather than eating the slower-digested sandwich or crackers. I don't beleive most diabetics are aware of this and probably go for the slower-digesting snack instead of the quick fix.
2. If warning symptoms do seem to fade at certain times during a diabetic's life, the key to regaining them is to raise glucose levels just enough for a period of two weeks to avoid having any lows at ALL during that time. This time frame allows the body to rid itself of all the emergency sugars that have been released during lows so the brain can recognize when it is low again.
While I am so sorry that your brother didn't read this study (I read it the first time in my hometown newspaper as an AP Wire article), I feel if is important to share this information with all diabetics who take insulin. While these two suggestions are extremely simple, they are things that we don't tend to do if we don't know their importance. Having BEEN one of those folks whose warnings about hypoglycemia had disappeared, I can personally attest to the success of using these suggestions to bring the warnings back. They do work, for I am now accutely conscious of any lows before I hit danger levels. I could very well have been in the same situation as your brother had I not read this article and taken its suggestions to heart. Now, instead of simply eating my meal if I am low when I test before a meal, I first get the carb fix going quickly by drinking a small amount of juice, and THEN eat my meal. Just a small change in habit, but one that could save a life.
I am so vey sorry for your loss. I do understand your need to have all of the questions regarding his death answered. It is also very helpful that others may learn something about "Dead in Bed Syndrome". I had heard the term, but did not know much more about it. I do thank you for the information.
There is a link through www.childrenwithdiabetes.com that may give you additional information. It is http://www.childrenwithdiabetes.com/d_0n_g00.htm.
I wish the best for your family.
dm
I have heard about the syndrome and it's quite frightening. The newer insulins have been terriific for many diabetics because they start working quickly -- that can make an erroneous dose even more dangerous, however. I have also read from pals on other boards about the scary times when they accidentally took their short-acting insulin instead of their longacting insulin.
Many have developed tips & tricks to minimize that likelihood. Some put elastic bands around one vial so it feels different; this is especially important for diabetics who've lost some eyesight. Others store their short-acting and long-acting vials in completely separate locations (bedroom for long acting; kitchen for short acting).
Mixing up our insulins can be deadly because most folks take a significantly larger dose of the long-acting insulin in one shot than we do of the short-acting insulin. If we're not diligent and accidentally take, say 20 units of rapid acting insulin instead of 20 units of our "basal" insulin the result is deadly.
We're all human and busy and occasinally distract. Perhaps there's no failsafe way to ensure we don't make a mistake like that. This is one of the many reasons we need a CURE for this disease.
I don't have the words to comfort you in your loss. I do hope that you & your family can draw strength from one another to move forward through the pain and anger. Your brother in law was clearly a beloved and loving fellow and his good works and ideas can live on through you all. Take good care of you ... and each other.