I met John Crowley a couple of years ago when I started working with Alliance Health. He’s a sweet, down-to-earth, tech-savvy guy who made me realize — for the first time really realize — how much a child’s diabetes affects every aspect of the parents’ life, even long after that child is able to perform all the daily D-management tasks on their own.
A Guest Post by John Crowley, Caregiver Advocate, DiabeticConnect.com
Long before diabetes became part of our family, I remember watching the movie Steel Magnolias with my wife. The scene where Julia Roberts experienced a low blood sugar was truly horrifying to me. Not only because of the tormented look on her face, but also because of the way Sally Fields forced the orange juice down her throat. I remember thinking, “Is that really the way to do that? It seems like it could kill her?”
Well, my son has now been diagnosed for almost nine years and I still don’t know if the Steel Magnolias portrayal is accurate or not. In all this time, we’ve never seen our son experience a low that caused that kind of reaction. He has been low—really low—but always coherent and able to calmly get some carbs in his system and recover.
As a result, the dreaded “insulin shock” hangs out there as an unknown, a nightmare waiting to happen, a time bomb ticking down. I feel confident in dealing with pretty much every aspect of diabetes, except this one.
A few weeks ago, I thought I was going to have to face my fear in the most stressful of circumstances. We were on a family trip to the east coast. Our kids had never been to that side of the country and we were typical tourists, cramming way too much into every day.
One beautiful Friday, we headed out for Washington DC. We had a fantastic day. The monuments were inspiring. The Holocaust Museum, sobering. The Smithsonian, entertaining. My wife had a bunch of snacks in her purse and we power-walked our way down our list of “must-sees.”
As the afternoon turned to evening, we had only one thing left on the list: Arlington National Cemetery. We stood outside the Lincoln Memorial and looked across the Potomac at Arlington. It was obviously a bit of a walk. But parking had been such a huge headache, we decided it would be best to walk rather than go back to the car and try to find parking again.
It seemed we had made a great choice. The weather was beautiful. People were boating on the Potomac. Bikers and joggers passed by us also enjoying the picturesque day. As we arrived at the JFK memorial, my son started to feel like his blood sugar was dropping. Quickly, we opened my wife’s purse only to find that we had eaten every last snack. My son tested his blood sugar. He was 60 and felt like he was dropping fast.
We turned our back on the walk over to the Tomb of the Unknown Soldier and headed straight for the Arlington Visitor’s Center. Inside the visitor’s center, we asked if there were any vending machines—even for employees. Nothing. Now what?!
I remembered seeing the escalator coming up from the subway station just outside of the cemetery. Surely there would be a vending machine there! So we walked back toward the Arlington Memorial Bridge and hurried down the escalator to the subway station. Again nothing! Is there a law in DC against vending machines?
My son tested again: 50!
Short of calling 911, I couldn’t think of what to do. I didn’t want to overreact. But here we were in a city where we knew no one, where everything is unfamiliar. And we needed a solution FAST! Images of Julia Robert’s contorted face flashed through my mind. Were we really having an emergency? I didn’t know.
My son straightened up and said, “I can make it back to the car,” and he headed up the escalator and across the bridge. I was much less sure than he was. I looked at the water bottle of every biker and jogger who passed by, hopping someone had some Gatorade that I could beg or buy from them. But no such luck.
My son got really frustrated with my questioning how he was feeling every other minute, but I was really scared. He assured me repeatedly that he was going to make it. When we reached the other side of the river, I knew the car wasn’t too far away. I started to feel a litt
le calmer. And sure enough, we reached the car and ripped into the snacks before he dropped too low.
Lesson learned: never, ever eat ALL the snacks!
Thanks for sharing, John. So, do any of you all have a close call story? A frightening low? A time you were caught unprepared?
http://journeywoman.typepad.com/motherhood_has_been_a_jou/2006/02/bad_bad_morning.html
http://journeywoman.typepad.com/motherhood_has_been_a_jou/2008/08/bad-bad-night.html
These come to mind. I’m not the diabetic, my sweetie is.
Good story! I could feel your pain! You think you are prepared-but, let me tell you, sometimes things happen! Thanks for sharing.
speaking of scary lows..just posted this to my twitter account
@annetics Woke up at 3:30 am, completely drenched in sweat, confused & wondering how long my BG had been in the 30′s. Scary. Glad I woke up.
I think it was one of the worst lows I’ve ever had, probably because I had been very low for a long time. I still feel low now (shaky), even though my BG is 245.
I empathize with the feeling that I can “make it back to the car.” Sometimes it is dropping slowly, and I’ve had similar experiences. Every now and then, even with great diligence, you might come up short with carbs on hand. People make fun of me at races for packing on so many calories (on my bike or in my SPIbelt).
My daughter was dx 4 years ago at the age of 24 months…in the time since, she’s had frequent terrible lows. I mean B-A-D…like passing out and hitting her head, confused, combative, screaming, too confused to drink juice, biting when I try to rub cake mate on her gums…they’re awful. Usually they happen in the 50′s…her ISF hovers around 250 — even still, 4 years later. The pump has helped alot, but those lows still lurk in the madness that IS the reality of raising a child with diabetes.
The scene of trying to force juice is all too real to me. But it’s not the movies — it’s really my life.
The fear of being left without a quick sugar source gives me palpiations. I carry so much garbage with me all the time that I’m sure some people must think that all I do is feed my CWD crap!
Our daughter was diagnosed about 15 months ago. We have yet to use the glucagon. We have yet to massage cake icing gel into her cheek. We have yet to give her those chalky glucose tabs.
We have a false security because we have never seen her shake or convulse or pass out. I just hope that if it happens (or when it happens) that it happens in my care and not while she’s with a grandparent or other provider who may not be able to think clearly or act quickly.
Not that I am 100% sure that I could think or act. But at least I KNOW what to do.
One day at work I got a call from my mother who cares for her while she’s not in school. She was at 25. She had been at the neighbor’s playing (who I am not 100% confident in, but I can’t keep her locked up in our house). It was lunch time and she was “very hungry.”
How was she at 25 and still functioning?
Just this morning she ran out of the house quickly to catch up to her brother and grandfather who were going for a walk. She was out the door and down the street before I could yell after her to take her supplies.
I just have to hope for the best and be as prepared as I can be for the worse.
I was diagnosed as a diabetic at age 3 in 1959. School years were problematic. Some thoughts for you:
NEVER mix up snacks with low glucose treatment. As a kid, I carried cellophane-wrapped candy canes with my school supplies, with strict instructions not to eat them unless absolutely necessary. In college, I carried table sugar in a 35 mm file container, for emergency use only. Today, with glucose tabs in tubes, glucose gel, etc., there are many options. Every diabetic using insulin needs to carry treatments.
I recently started using a CGMS which has taught me things I was never aware of (considering I have been a diabetic for 50 years). A slow walk around the block with our 11-year old dachshund will drop my blood sugar by 30 points. A cup of coffee (plain) will raise my glucose 25 points. Drinking a light beer (6-8 grams of carbs) has no impact whatsover on glucose; drinking a regular beer (12-15 grams of carbs) will raise glucose levels significantly.
By the way, my worst experience with a low: riding my bike home from school as a teenager, and losing consciousness on the way. My sister found me on the side of the road–and brought my parents to rescue me. Needless to say, there was no more bike-riding to and from school from that point on. (No blood glucose meters were available at that time).
I was diagnosed at age 3 and I’ve lived with D for 24 years now. I’ve never had to use the Glucagon injections, but I keep them around because you never know. I have been through some pretty scary lows, I can tell all of you parents each low is different.
I’ve been as low as 14 (at the ER) and still functioning, talking and telling the nurses I need juice. I’ve also had serious “insulin shock” or low blood sugar reactions as I call them at 50.
I think as long as you are prepared and know how to treat those severe lows, you’ll be fine.
I would have asked if there was a coffee machine in the visitor’s center–if there’s coffee for the employees, there might have been sugar packets nearby you might have been able to use.
I get down to 50 a few times a week (not intentionally). I’m not sure at what number it becomes life threatening, but I’ve never felt close to passing out. Thankfully I can feel going low: sweaty, shaky, weak.
I always keep small 12 fl oz bottles of gatorade stashed around the house and car. It’s sugar water so gets into your blood fast. Each bottle is 21 carbs so should not bounce you from lo back to super high.
I was diagnosed with type 1 diabetes 6 years ago and never really had any problems with extremely low blood sugar. A few months ago I took my 13 year old niece with me to Wal-Mart and we were heading to check out and I could feel my blood sugar was getting low. The lines are always long at wal-mart, but this day they were longer than I had ever seen them, but I was pretty sure I could make it until I checked out. However as time passed I could tell I really needed some glucose and I needed it fast. So I grabbed a vitamin water off the shelf and chugged about half of it down, but it was too late. I passed out and had a seizure in the middle of Wal-Mart and I woke up a few hours later in the ER. It was by far the scariest experience I ever had and now you won’t catch me dead without glucose tablets in my pocket.
I don’t really remember the lowest low I ever had … but I’m sure those around me at the time remember it very well. It was December 31, 1977, New Year’s Eve, and I was on a college choir tour of Romania (Communist Romania, in those days.) Blood glucose testing hadn’t been invented yet. Dinner began around 8:00 p.m. I was taking NPH and Regular. It was a diabetic’s nightmare. I must have taken a shot of Regular to cover one of the late-night courses. All I know is that I went to bed and did not awaken with my alarm clock. My roommate ran to the other Type I diabetic on the trip. She and my roommate got some Romania orange juice (it was like Tang, and served in a plastic container) and sugar. They poured the sugar into the sides of my mouth, and when I finally sat up they began giving me orange juice. I came to just as the Romanian translator was telling our choir director that the doctor they had just called into the room had determined that I must not have taken my insulin, and that I needed to go to the hospital for an insulin shot! I came to just as she said that, and screamed “No. I am just fine. I do not need insulin!”
Wow, what a tough story! While I don’t have kids, I am a personal trainer who works with diabetics who have had problems in the middle of sessions. Very Scary!
I have actually developed my own fitness training blog. In the next few weeks I will be interviewing a local Certified Diabetes Educator, MSN and providing the videos at my site. If it helps anyone they can visit my site at:
http://thetraininggenius.com/free-fitness-updates/
I hope this helps!
Jason Chiero, CPT
Each person in our family has these on their key chain. Our daughter also has one her meter bag and backpack.
http://www.quickfixkeychain.com/
I am Type 1. I was diagnosed at the age of 34, in 1985. for 22 years I had no catastrophic low Bgs, till late February of 2007. Since then I have had a catastrophic low Bg each February in the last 10 days of the month. It’s a bit spooky. The first was at a friend’s house, and she called the paramedics, after cramming my cheeks full of glucose tabs. The second was in my own apartment, and I was awake to call 911.
The third, this February 27th, was on the Tri-Met bus system, here in Portland. I had a TGIF dinner with friends, and had taken what was usually enough insulin for the dish I had. When I got on the Max-Line commuter train going home, however, I felt low, and tested at 55, and took some tubed frosting to boost it. That worked for about a mile, when I was back down to 58. More frosting. I was on a Bg roller coaster from the river all the way to 122nd and Burnside, with frequent applications of frosting, and got on a bus South to my apartment. I was so low I completely phased out and passed my stop by. I came out of it when the driver announced “End of the line, and I’m headed for the barn.” Not thinking clearly, I got off the bus, and tried to cross the street to the stop for a bus going back North.
The paramedics told me that the next bus driver had found me trying to crawl across the street in the crosswalk. She said the only thing she could understand was “Type 1 diabetes, low blood sugar”. Then they scared me. They said that their first try at measuring my Bg got a zero reading, which meant it was somewhere below 20. They boosted it back up, and I felt fine for 20 minutes. They told me there was only a charge if they took me somewhere.
So, I called Tri-Met’s transit tracker, found the next bus arriving in 5 minutes, thanked the nice gentlemen profusely, and got out and waited the five minutes at the bus stop I’d been aiming for when I first stepped into the street. That bus took me home to my apartment, and a nice warm bed. The only lasting results were that it all flatlined my immune system so badly I woke up at 3:30 with an horrific sore throat, from aattending the TEA Party that morning where many brought their parents’ kids, one of which must have sneezed on me. It took me 3 weeks to get rid of that infection.
I must admit, I do find myself trying to figure out what to do between February 14 and 28, 2010.
My BG was 16 last time Arlington EMS caught me.
That was close to the lowest I have ever been. why didn’t you call 9-1-1 John ? no such thing as too close to call.
What a great story!
Thanks for sharing it.
Thanks for sharing. Ever realized your son was great?
I can empathize with John. My daughter, dx’ed at 5 and now 16, had been low plenty of times but never totally incapacitated or unconscious. I have been careful in her management; she is responsible.
Then she went to France and stayed with my sister for 3 weeks. All went well, then one morning my phone rang saying that my daughter had fallen asleep and wouldn’t wake up.
- “Rowse her – give her sugar” I say. She won’t rowse.
- “Rub honey on the inside of her cheek” I say. It had no effect.
- Three words I never wanted to say: “Get the Glucagon”
My sister, who has never administered a shot, did it like a pro. Did anyone know, however, that it takes 10 mins for Glucagon to work? I didn’t….I do now.
In the meantime, we called an ambulance. She woke just as they arrived.
I will never be flippant about the risk of lows, nor do I ever think I will be the same after that. I’m just so glad that college is two+ years away…I may need that long to prepare for it.
John…and Amy,
John, thanks so much for sharing your story and Amy, for your understanding of what we as parents endure. John, man does this sound all too familiar: and it brings it all back in frightening technicolor.
Recently (Aug 27th) on a family vacation, our 8 year old daughter, JoJo, suffered severe nighttime hypoglycemia due to an exercise lag from the day’s constant swimming. She was in post-ictal seizure when her cousins rushed in to tell us that she was acting funny. It was horrific. What threw us off as we ran down the emergency “things to do”, was that her BG was normal, when we expected it to be low (I was ready to inject the glucagon). Her hypoglycemia had occurred between 4 am and 7am (BG’s of 180 and 93 respectively). The latter BG was due to her liver releasing enough sugar at the bottom to bring her out.
It was a gut-wrenching experience we hope we never have to face again, and one we hope JoJo doesn’t go through again. I choke up just thinking about it. The fear of our kids “going low” in the middle of the night is our greatest. It changed everything about our nighttime routines, because type 1 diabetes doesn’t rest, it doesn’t take a night off. It seems to hover around us more then, waiting for an opportunity to strike down our kids when the lights are out and the world is quiet.
We just have to continue to do everything we can to fight this dreadful disease and keep our kids safe, while helping them learn to own it.
I wrote a blog about JoJo’s nighttime hypoglycemia at our website, http://www.parentingdiabetickids.
Thanks again John, Amy.
In the fight with you,
Jeff Kolok
Hi Amy,
It looks like I forgot to end our website address with .com. Would you be kind enough to make that correction. Thanks so much.
Stay well.
Jeff
Thank you for sharing your stories .They have bought a tear to my eye .