Terror in the night
Sometimes the important things in life are handled as part of the daily routine, and the urgency becomes lost in the ritual. Our actions become mechanical; our emotions are disengaged. Until we are jarred awake.
Abi and Mr. Darcy.
Photo courtesy of
Abi Thornton Atkinson
I was jarred awake at 2:48 a.m. The silence of a sleeping house was violated by an unnatural and intruding commotion—crashing and thrashing, guttural moaning, noises I'd never heard before and that are now indelibly imprinted into my soul. It sounded as if a wild animal had wandered into our home, found itself trapped, and was fearfully fighting and flailing for freedom.
It was no wild animal. It was my precious 11-year-old daughter. Writhing. Convulsing. Twitching. Eyes rolled back into her head. Jerking. Fighting. Supernatural strength as she fought off our attempts to help. Guttural, choking, gagging sounds, then blindness. My heart will never be the same.
"Grand mal seizure. Nighttime hypoglycemia."
The doctor said the words so matter-of-factly, describing our moments of sheer terror as "…not an atypical response to low blood sugar."
NO! We did not want to accept this monster as a common guest in our lives; my husband and I would do anything to prevent that. We would not calmly accept this terror as just another facet of type 1 diabetes. We would find something.
Only a year earlier, I had been completely ignorant of type 1 diabetes. Abi's diagnosis at 11 years of age, followed by my 14-month-old granddaughter's diagnosis, forced me to learn more than I ever wanted to know.
By the time type 1 diabetes is diagnosed, the body's immune cells have overzealously attacked and destroyed its own cells, specifically cells in the pancreas that are responsible for insulin production. No one can live without insulin. Without insulin, glucose that cells need for energy production cannot enter the cells and is stuck in the bloodstream, resulting in high blood sugar. With the lack of insulin undetected, cells begin to starve, and the body begins to burn fatty acids and produce the byproduct acidic ketones.
Unchecked, this process results in death, and it can happen fast! Like other type 1 diabetics, my daughter's life is dependent upon measured and timely doses of insulin. All day. All night. Calculations are constant and complicated. Management is a balancing act. She can't live without insulin, but too much will kill her. Her dosing needs to be changed daily. Kids with type 1 diabetes also face the threat of long-term complications that are unimaginable.
Diabetic communities whisper about the unthinkable: dead-in-the-bed syndrome, where kids die in their sleep. Type 1 diabetes is a merciless disease that cannot be avoided (nor cured) by healthy eating and regular exercise.
On our night of terror we had done everything right. We woke up at midnight and at 2:00 a.m. to check Abi's blood sugar. Her numbers were good both times. But at 2:48 a.m. when we were jolted awake, "routine" was gone and "urgency" was back. Panic came along with it. As Abi suffered, frantically we squirted gel inside her cheek, administered emergency procedures, and sobbed for the brief moments that seemed like eternity while Abi's vision was slow to return. Then her eyes were clear and she looked at us, remembered nothing, got some water, and went back to bed. But, her dad and I and her siblings did not think we'd ever sleep again.
Desperation drove us to search for anything that could warn us of dangerous blood sugar fluctuations.
Wanted: that special dog with special skills
The search seemed futile until I read about a young lady whose dog could detect changes in her blood glucose levels and alert her of danger. That could be our answer—a diabetic alert dog that could detect fluctuations in Abi's blood glucose levels and could warn her before her blood glucose reaches dangerously low or high levels. The dog's sense of smell would protect Abi from seizures caused by low blood sugar and protect her from extreme high blood sugars that lead to life-threatening ketoacidosis. With prompting from a service dog, Abi could check levels and make necessary adjustments.
Charlie, a diabetic alert dog,
alerting Lily to test her blood sugar.
Photo courtesy of Angie Simonton
Unfortunately, we were victims of an unscrupulous organization in our first attempt to obtain a diabetic alert dog. Four experts testified on our behalf at the Attorney General's proceedings: our dog demonstrated no evidence of scent training, no evidence of drive to do scent work, and no temperament to work as a service dog. We wasted time and money that our friends and family and community had raised. Cynical about how hurtful and dishonest some humans could be, we had also lost confidence in the ability of service dogs to perform the task we needed done.
In spite of close medical supervision, my daughter's fluctuating blood sugar levels continued. With her blood glucose meter, she could check her blood sugar at any time of the day. But without the indicators that most people have to sense that their blood sugar is out of range, she was a ticking time bomb. We needed a dog that could be trained to sense when she needed to check her levels.
At that time, there were few trainers of diabetic alert dogs. With no industry oversight, standards, or any confirmation of skills or training methods, I feared a repeat of our nightmare with the first organization, but I was much more fearful of the process that was stealing my daughter's health and confidence. I armed myself with a mother's determination to protect her children and tackled this mission.
I began with two propositions and a conclusion:
- Dogs have powerful scenting capabilities that enable them to detect disease. In double-blind studies, dogs have been proven to detect diseases like cancer and tuberculosis.
- Diabetes is a disease with an odor. A doctor intervened and saved my daughter from incorrect, and perhaps deadly, treatment when he smelled her high blood sugar!
Conclusion: Dogs can be trained to detect the odor of diabetes.
That was a beginning that led to more questions. Which dogs were best suited to this work? Which training methods would prove most successful? What is the target odor? How would we collect it? Some questions were more easily answered than others.
Which dogs? People have trained scent-detection dogs, and people have trained service dogs. From them I could find out the types of dogs that would work best as a service dog whose primary task would be scenting.
Which training methods? You cannot force a dog to scent. It is possible (not desirable) to model a dog (or compel a dog) into certain positions or behaviors, but there is no way to compel a dog to smell something. We explored the world of positive reinforcement dog training. There were experts in this area, too, so once again I gathered information from trailblazers.
The questions that remained taunted us:
What is the target odor?
How do we collect it?
To my knowledge those are questions that are still being probed, and answers are not yet conclusive. I long for some solid research on this topic. Until then, what we do is make observations and conclusions and record data about our own training. We then make a few changes and do more training…it is a lifesaving science experiment.
Enter Mr. Darcy
With the assistance of multiple trainers, Abi and I selected a 7–week-old pup. We observed in the first few weeks that he was with us that "Mr. Darcy" was indeed very interested in my daughter's breath when she experienced high or low blood sugar levels. We offered many high-value reinforcements for his interest in this odor. Mr. Darcy was also really "sniffy" around any sweat points (one of the classic symptoms of low blood sugar is excessive sweating). We put these observations together with some facts:
- Human bodies are constantly shedding scent through pores and through fluids.
- Something chemical occurs inside the human body during a diabetic event. We assume that as a result of those chemical changes within the body that odor is being shed through pores and fluids.
How could we capture that odor in order to have controlled training sessions? We concluded that we could collect scent samples through one of four sources: sweat, skin cells, breath, saliva. With any of these sources, however, we would merely be collecting a "throw-off" scent, a secondary scent. We would still not know the signature odor. Even if the collection methods produced results that were reliable, we would not know the scent—what is in sweat or in saliva or in breath that is indicative of low blood sugar?
Early in my research about methods to collect samples, the only suggestion I found was for diabetics to remove their socks, place them in a ziploc bag, and freeze them following a low blood sugar event.
That didn't make sense to me. If my daughter checked her blood sugar at 11:00 a.m. and had a low reading, removed her socks, bagged them, and placed them in the freezer, I don't believe that would be a pure sample. It is likely that she also had experienced a high blood sugar level sometime between 6:00 a.m. wake-up and that 11:00 a.m. low. Or, she might have (hopefully had) experienced normal blood sugar levels during that time. Using her socks as scent samples did not seem like a clear way to present the problem to the dog.
Our alternative to this method involves dental cotton rolls, test tubes, and ziploc bags. When my daughter's blood sugar level is 75 or lower (but not in the dangerous range), I have her place a dental cotton roll in her mouth, saturate it with saliva, move the cotton directly from her mouth to the test tube, close the tube, and place the tube in a ziploc freezer bag. The bag is marked with the date and blood sugar level and placed in the freezer, in an area removed from odorous foods.
Making it up as you go along
With samples available, the next step was to use them to train Mr. Darcy to recognize, search for, and locate a scent and then indicate a successful search. I learned a great deal about these concepts and steps from experts including Steve White and Donna Hill, and have simply applied that knowledge to the diabetic alert dog world.
I think of the process as a three-part outline:
- Recognize the scent
- Recognize and locate the scent
- Recognize and locate the scent and perform a trained behavior to indicate the scent
My training approach uses operant conditioning (OC), but Steve White reminds us that "…as OC trainers, we may not (intend) to use classical conditioning, but like it or not, when you're using OC, Pavlov is sitting on your shoulder."
In other words, scent training becomes a blend of classical conditioning and OC. I start classical conditioning early. I entice a puppy to sniff an odor and then offer a high-value reward. The dog begins to associate the odor with the high-value reward. When I can see that recognition clearly, it is time to increase the difficulty. I present the odor in a different vessel, in a different location, with more distractions. Next, I hide the odor and give the dog an opportunity to recognize and find it.
Meanwhile, in separate training sessions, the dog and I work on important behaviors that would be foundations to the alert signal. When the dog's understanding of the odor is solid, and when the dog's performance of the desired behavior is solid, only then do I chain them together.
Selecting the alert signal, or report behavior, is a matter of preference. Some common diabetic alert dog signals include: bow, wave, nose touch, paw touch, lick, stare, tug clothing, hold unique object, bark. Abi and Mr. Darcy and I experimented with many of these signals and found most unsuited to our goals.
Bark—No good in public, as barking can disturb the normal flow of business in public locations.
Faith's diabetic alert dog, Ruby ("Wuby"),
gently taking the bringsel to alert her that
her blood sugar is low.
Photo courtesy of
Tyler Type 1 Diabetes Support Group
Paw touch—As behavior escalates (the diabetic is not always quick to respond when blood sugar is dropping), this alert can become painful. It can be especially overwhelming if the diabetic child is small or if the diabetic adult is frail. If the diabetic is sleeping and hard to rouse, the dog could actually injure the person in the process of alerting.
Lick—Licking can be overlooked as typical behavior.
Tugging clothing—Tugging can cause an already disoriented diabetic to lose his or her balance and fall.
Stare—A stare may not be noticeable.
As Abi and I worked with Mr. Darcy, we decided to try something that, to our knowledge, had not been tried by a diabetic alert dog team. We introduced a bringsel stick, a small, stuffed rod that attaches to the dog's collar. The dog could take the rod in his mouth to alert Abi of low or high blood sugar. This way, the alert report became of double value: a signal for Abi and a reward for a retrieving-motivated dog!
By the time he was six months old, Mr. Darcy could respond to the odor of low or high blood sugar by picking up the bringsel and holding it in his mouth. It was a very obvious, and a very professional-looking, signal. Anyone who was with us, even bystanders who observed us in public, could tell that the vested medical-alert dog with the neon stick in his mouth was sharing important information.
Smart dog, separate signals
A bit later, we made an amazing discovery that led to Mr. Darcy being able to offer discriminatory signals for low and high levels. We think he was the first diabetic alert dog to accomplish this!
When we started training Mr. Darcy, we created a hierarchical chart of his motivators. We reserved the highest-value reward for the behavior that was most urgent: alerting for low blood sugar. We selected a lesser-value reward for high alerts. We were careful to make the two rewards very distinct. Our training went like this:
Mr. Darcy would bring the bringsel. Abi would check her blood sugar level with her meter, always kept in the same spot in our home (consistency is non-negotiable). If the level was low, she would say, "Oh, it's a low. Where's your LOW TOY?" Next, Abi would turn toward the kitchen and retrieved Mr. Darcy's special red Kong ball from the top of our freezer. Abi and Mr. Darcy would head outside for three retrieves with the Kong ball.
If the blood sugar level was high, Abi would turn toward the den and reach up to a shelf for a special treat from Mr. Darcy's treat jar.
It did not take very long before Mr. Darcy would present the bringsel and then turn to a specific spot before Abi's meter indicated a blood sugar level of low or high. He showed us that he could distinguish the odors and was anticipating the proper reward! We added another signal into his chain:
bringsel + wave of paw = low blood sugar
bringsel + play bow = high blood sugar
Spread the word
From the beginning of his training, we taught Mr. Darcy that when he alerted Abi, additional rewards were available for each additional person to whom he reported. I wanted Mr. Darcy to become the world's most obnoxious tattle-tale, and he is! If you were to visit us and Abi's blood sugar wavered during that visit, you would find a gorgeous fox-red British Lab staring at you, waving his paw, and holding a neon-colored bringsel. You might respond in tears, as I do. It is a beautiful gift to have an amazing nose working to save the life of my daughter. I firmly believe that Mr. Darcy is not only improving Abi's quality of life but is extending her lifespan as well.
The nose knows
Diabetic alert dogs (often referred to as DADs) are an unproven and often contested type of service dog. While we wait anxiously and hopefully for research to validate the work that is being done, I can offer my personal validation.
Abi has not had any seizures since Mr. Darcy began working for her, a result of Mr. Darcy's vigilant companionship. Her A1c (a blood test that gives an indication of the average blood glucose level over a 4-month period) has improved. Her glycemic range has improved (she has fewer lows and fewer highs; she stays closer to her target value).
Mr. Darcy gives Abi advance warning so often that many lows are eliminated completely and most highs are addressed before they become extreme. On many occasions, Mr. Darcy's nose reacts to the odor of low or high blood sugar events before the meter-detecting data from the blood is available.
Mr. Darcy has given
Abi poise and confidence.
Photo courtesy of
Abi Thornton Atkinson
In addition to the crucial detection and warning that Mr. Darcy provides about high and low levels, he has increased Abi's confidence. Abi is unable to remember seizures. But she can recall and is greatly shaken by the feelings surrounding the onset of a seizure and the feeling of total helplessness before and after the event. Abi also has heard stories about what happens during her seizures.
The imminent threat and the unpredictability of seizures (even when we were diligent about doing "all the right things") caused Abi to lose confidence and become less social. Her fear was, "What if?" No teenager wants to seize while out with a group of friends. Abi also developed a fear of going to sleep, a time when she would be completely vulnerable and totally out of control. However, Mr. Darcy alerts at home, in public, when Abi is driving, and when she is sleeping.
The effects of Mr. Darcy's consistent and accurate alerting have surpassed what medical diabetic statistics can offer. He has given Abi poise and confidence. The truth is that Mr. Darcy bears the burden of diabetes as constantly and as intimately as Abi.
There is not enough laboratory-documented scientific proof available about diabetic alert dogs, but I have empirical data. I have a healthy child. Abi has a changed life.
A turn in the road
As a result of Mr. Darcy's success, many families in situations like ours have approached us with questions or requests for assistance. Some have experienced a negative first attempt to get a service dog, as we did, and are hesitant about a next step. Others are sure of what they want, but are desperately searching for a DAD.
Being asked to advise other families catapulted me into a role for which I felt woefully ill-equipped. Completing the Karen Pryor Academy Dog Trainer Program has helped resolve some of my feelings of inadequacy. I also know that there are very few people who have more years invested in this area than I do. My motivation is personal and sincere; I am at war against an enemy that invaded our lives, attacking my 11-year-old daughter and my 14-month-old granddaughter.
A match for you?
I receive approximately six calls each day from people searching for help on their journeys to obtain or train a DAD. From my story, you might conclude that every diabetic should have a service dog. Definitely not. Diabetic alert dogs can be an invaluable tool for diabetic people with wildly fluctuating blood sugar levels, with sudden drops or spikes, with the inability to sense changes in their blood sugar levels, or for those who are prone to seizures. But, the rewards of a DAD are not without responsibility. Many people are not ready to add that level of responsibility to the constant demands of the disease itself. Many people cannot commit to the necessary consistency or to the ongoing training that comes with a service dog.
A DAD opens a family up to a new level of transparency or visibility, and the diabetic and the family can be unaccustomed to this exposure. It's possible for type 1 diabetes to be a very private condition; today's insulins are smarter and today's pumps are smaller. Type 1 diabetes PLUS a service dog is NOT private, however. Any service dog draws attention to the handler. But, a DAD draws an inordinate amount of attention since the curiosities of the public cannot be satisfied by observation. People rudely and bluntly ask hurtful questions like, "What's wrong with you?" or "Why do you have to have that dog with you?"
Someone searching for a DAD may be looking for a tool that offers less responsibility, more sleep, and less expense. With a diabetic alert dog, they are guaranteed the opposite: MORE responsibility, MORE expenses, and LESS sleep. Desperate families need to know that there is no guarantee, and that the path is tiring.
Sleep in peace
A diabetic alert dog is well worth the additional responsibility and visibility he brings when he stands by your child and acts as an amazing early-warning system. There are countless parents who sleep only in two-hour segments, who fear for their children, and for others when the diabetic is driving, who have sobbed watching their precious son or daughter seize. There are too many children who don't have the confidence to join their friends in typical activities because they cannot feel the danger signals of fluctuating blood sugar levels. These families are as desperate as I was when I was searching for an answer. Our search for help led to our friend Mr. Darcy.
The credit for the success of Mr. Darcy, as well as for the success of the family-dog teams I have assisted, should be shared with the many trainers who listened to me patiently and answered my endless questions. To all the families out there who are searching and suffering, I wish the same support and assistance, and a solution that brings them peace.