Tuesday Jul 31 2007
Hi Jason- my name is James. I have a little blog here that nobody reads. OK I have a few readers. But it’s fun to write. Kind of like kicking a ball around in the backyard by yourself. I like writing about places I visit and about things I read in the news. Which brings me to you dude! I just read about you and your quest to obtain a blood sugar sniffing dog. And raising money with a lemonade stand? Genius. If a sick blond haired little boy selling lemonade while pining for a puppy doesn’t tug at the old strings nothing will. And the fireman outfit? Again, you know cute.
I’m fairly critical of the media and especially critical of the way local news edits and spins stories to create what THEY want, rather than the truth. So when I saw the story “Diabetic boy needs dog” my eyebrow raised a bit. And unlike most other stories I’m barely qualified to comment on, I’m a type 1 diabetic - just like you. That gives me a bit of credit. I also checked out your site pawsoflife.com and read more about you.
First - I’m sorry to hear that you were recently diagnosed with Type 1 Diabetes. I know exactly what transpired when the doctor sat with you and your parents in that little room and explained what diabetes was. Like most folks they probably thought only overweight people confined to motorized scooters developed diabetes. Nope - type 1 is genetic, and many healthy people just like us have it. Your mom probably cried and pontificated about how you and your family’s life will change, and lamented about how you won’t be able to live a normal life.
I know this because 20 years ago my sister was diagnosed with type 1 diabetes at your age. My mom and dad had to learn how to take care of her, how to spot and correct her blood sugar ups and downs, and how to administer injections and medicine. And blood sugar monitoring equipment was stone age compared to what we have now. And you know what else sucked? After watching my sister live with diabetes through childhood and teens I was diagnosed myself at age 20. How’s that for a kicker? It’s a rarity really, as most type 1 is early or late in life. Anyway for 12 years now I’ve checked my blood sugar, taken shots, and made it a part of my life. But you know what? It’s not that bad…
After the initial minor life modifications and learning curve I can honestly say that very little in your life will change, and again, it’s REALLY not that bad. As for finger pricks and injections? Hey, it’s a part of life now. You’ll get used to it. Having diabetes is annoying at times. It still sucks sometimes for me too. When I’m out at the bar with friends and we run off to a movie, or more often another bar, I don’t want to have to slow my friends down taking my blood sugar. And I need to ensure I carry food with me at times. Trust me, you don’t want to go hiking eight miles and not be stocked with power bars. You don’t want to keep your blood sugar too low if you’re snowboarding or exerting energy for the day. And while you don’t want your blood sugar to be low, you don’t want to remain consistently high either. I admit it IS a tricky balance.
But all that said: If I had to CHOOSE a disease or illness to have, type 1 diabetes would be my number one choice. Well maybe psoriasis, just not on my arms. Hey we aren’t in wheelchairs. We have our arms and legs, and they work. We can see, hear, smell, and do EVERYTHING anyone else can do. Diabetes is 100% completely controllable. It takes discipline, strength, and skill. But you’re young, and smart enough to run a lemonade stand. Hence I think you’re smart enough to take care of your body and learn the intricacies of it.
If you look through my site, (and excuse the profanities – I usually don’t write for nine year olds,) you’ll see pictures of me doing everything a normal person does. I bike, swim, travel, scuba dive, fly airplanes, and I do it all with type 1 diabetes. Is diabetes annoying at times? Certainly. But it’s never stopped me from doing anything I wanted in life.
Now. This dog business. I had a golden retriever growing up. He was great, and I still miss him. (Speaking of needles.) Who on earth told you that you need a dog to tell you when your blood sugar is low? I love dogs. I think dogs that find people alive in earthquake rubble or dogs that assist blind people are incredible. As are their trainers.
You really need an insulin pump combined with a constant glucose monitoring system. Your mom says on your site they aren’t completely accurate. That’s correct; however no method of measuring your daily blood sugar is completely accurate. Twenty years ago my sister had to match up a blood sugar stick to a set of colors. This cumbersome process took two minutes. Today my blood sugar meter takes about 20 seconds and gives me a specific number. You’ll rarely get a 100% accurate reading, but that’s irrelevant, because what you should be concerned about is the TREND of your blood sugar. Is if going up after a big meal? Is it descending rapidly after a long soccer game? WHERE your blood sugar is going is more important that the NUMBER it’s at. Also a dog isn’t going to bark out your blood sugar number. See what I’m getting at? It’s up to you.
If I may quote your mom from your site:
Right now we have 3 options. We can continue testing our son around the clock. Option 2 is a continuous glucose monitor which would subject Jason to technology that is not yet accurate, having another infusion site (like a small IV), and doesn’t save any finger pokes. Or the option we have pursued and been approved for - a service dog (and best friend) that can help us know when Jason is in need of medical attention.
Jason, listen to me: A dog won’t change the fact you’ll STILL need to check your blood sugar every few hours. I do it at my desk every few hours at work, in the morning before biking to work, at home in the evening, and when I’m out with friends. I could have Lassie sitting right next to me yet I’d still need to monitor my sugar levels. Also according to what I’ve read a dog will only alert you when your glucose has reached a point of too high or low. What’s the point? You should already know where it’s going. And as mentioned, a constant glucose meter will do this for you.
Plenty of kids are diagnosed each year with type 1 diabetes. The weapons to combat this disease are knowledge of your body, eating and insulin delivery to match your daily activities, and having supportive family and friends. We have technology now that can basically give you a virtual pancreas. That’s pretty darn cool. And it’s more discreet than a dog. Plus, you don’t want a dog taking care of you - YOU want to take care of yourself. Relying on a dog to observe your blood sugar swings would cause more hassle and inconvenience than just doing it yourself. You want to be like a normal kid. Carting a dog around school will not make you seen as normal. Eventually you’ll realize you KNOW your daily patterns, activity habits and eating scheduled, and you know what to expect from your body. By the way does this dog bark at ALL blood sugar extremes? If we were standing in line at Subway and my blood sugar was high would be bark at me? Just curious.
I say keep the lemonade stand going, but when you reach your goal $25,000 donate it all to the Juvenile Diabetes Research Foundation. Better yet keep hustling the media and get a company to match it. $50,000, or even a portion of that money invested in research by knowledgeable people will help many MORE children like you. You and your brother would have the satisfaction of making life better for many other children, some that don’t have the resources and availability to medicines that we’re fortunate enough to have.
I know, I know - you still want a the dog! I did too when I was your age. Why not adopt a puppy from Maxfund? Hey no kid should get to fly pass the responsibility of house training a dog. Sorry Jason - I had to, you should too. You’ll still make the news, but it’s a wiser decision that will benefit more people, including yourself.
Feel free to drop me a note. I may disagree with your family’s assessment of requiring a dog - but friends can disagree and still be pals. If you have any questions send me an e-mail. And should anyone read this and think I’m a total jerk for picking on a little kid - here’s a link to the PawsofLife site if anyone wants to donate. I might even order some chocolate chunk cookies. I love those. Almost as much as I love sun chips and a cold beer on a hot summer day.
All the best - James
August 9th, 2007 at 9:57 am
Check out the KUSA message board for more discussion.
January 24th, 2008 at 4:44 pm
Thank you for linking to my site and for writing about my story. I changed my website so if you havent looked then please look now.
January 25th, 2008 at 1:38 pm
Hi Mark. Thanks for reading my post. I see Jason is on the Animas insulin pump. Have you guys also considered a constant glucose monitor? Dexcom and the Minimed Guardian are the most popular, and while not quite perfect yet they are very useful in monitoring blood sugar trends. Just curious what your family’s assessment and thoughts of those were?
I actually switched from daily shots to the Minimed Pump last Thanksgiving. (after I wrote this original post.) So far I love it. Check out my posts on that if you like. They’re very small and discreet - my “Guardian” sends my glucose numbers straight to my insulin pump every five minutes. Trust me it’s cool.
I checked out pawsoflife.net and see you’re picking up your dog in a few weeks! I’m sure you guys are excited, and I would definitely be interested in reading more. You should add a blog to your site so you can easily update. I would love to read how your new companion adapts and intergrates with Jason and assists him.
I still disagree with the medical necessity of using a dog for blood sugar detection. I think its overkill for the level of management type 1 DB requires. My prediction is that as Jason gets older he probably won’t need or include the dog in his outside activities.
BUT - I still wish you guys the best. I’ll check your site for updates. (Consider adding a blog using the Wordpress software.) More important - good job on your project, AND raising awareness between type 1 and type 2 diabetes. I think any kid would be lucky to have you as an older brother.
So what’s the dog’s name?
take care, james…
February 19th, 2008 at 9:18 am
Yes, we have considered it but, Jason wants anything but a another needle sticking into him.
I have added a blog to my website and it is free to register. http://www.blog.pawsoflife.net I have posted a picture of jason and his dog, Jedi one my website. http://www.pawsoflife.net.
and my coment to you thinking Jason won’t need the dog:
I’m so glad you blogged about Jason and I. Update: we have now raised $17,009 dollars. Jason has received his dog. For more information and a picture of Jason and his dog, Jedi, go to http://www.pawsoflife.net. My reply to is that this is Jason’s first pet. If wont accept Jason’s dog as a life saver than accept it as Jason’s only friend. I’m sure you know what it’s like to be a type 1 diabetic and have people think your weird and not want to be your friend because you are a type 1 diabetic. This dog is more than a life saver for Jason it’s his best friend.
February 19th, 2008 at 9:24 am
P.S. The dog has already saved Jason in the middle of the night. One of the other reasons that we chose the dog over the glucose monitor is because my mom and dad need rest too. The used to trade off in the middle of the night going in every 2 hours to make sure he was OK. My parents just cant handle that every night. The dog will save them that energy. The dog can go anywhere with Jason except in indoor pool.(The chemicals in the water will destroy the dogs sense of smell)
Feel free to blog to me anytime.
February 20th, 2008 at 11:25 am
Actually people think I’m weird without the diabetes :)
Thanks for the update and comment. I checked out your blog and look forward to reading more. Seriously I’d love to read posts about daily life activities, traveling, and how Jedi integrates in various situations. Since you guys are a somewhat unique case I think continuing a blog would be informative for a lot of people.
I am curious about the training process. i.e. how he senses Jason’s blood sugar extremes - as opposed to mine if I had low blood sugar in the same room. Those stories would make for an interesting category.
Anyway hopefully Jedi is adapting well. And agree or disagree on the dog I think you are a great big brother.
April 28th, 2008 at 11:56 am
I have a Service Dog for Type I x 3 years.
I have a few years on you as a Type I.
Diagnosed age 11 (1972) urine testing and all.
Now I wear a pump and a Dexcom.
I am a very “good” type I, I test and exercise and eat properly and count blasted carbs.
As you get older you may find that your abiltiy to sense changes in your blood sugar wane. This is my case.
So what does the dog do? She awakens me at night with low sugar. After all the years I ignore the beeps of my Dexcom & pumps. Sometimes it is 50 and sometimes it is 35 and I am a Nurse so why the problems?
Emotions are not well understood, so you dream you may get a pump of adrenaline, then your sugar goes up… othertimes other dreams trigger other releases of hormones…
At work if I get in a high pressure situation then control is out the door.
This kind of situation can make the sugar go either way, and lighting fast. So fast the dexcom can’t keep up. The tissue statuation of sugar lags behind the actual sugar reading… I find by about 10 minutes.
So, I am now trusting the dog for alerts, dexcom as backup (it is now in the shop), and monitoring my sugars closely.
The bottom line: Without the dog, I would have maybe slipped into a nice low blood sugar coma, and call it over. I have too much life to live, and if it takes an Aussie Sheppard at my side to live longer, then so be it.
Open your heart to the possiblity that you could be very wrong in your observations in this situation. Your current state of wellness may not refelct other type I Diabetics.
I have seen a few young diabetic pass away in a coma, that makes an impression that goes beyond your commnets here.
Best to you in your constant struggle to live, I know you understand that commnent.
Mark the Nurse (35 years of diabetic life).
April 28th, 2008 at 7:48 pm
Hi Mark - thanks for the comment.
As you can see by my correspondence with Mark I am definitely open minded, and look forward to reading reports and updates from their family on how the dog integrates into the family and helps Jason.
My concern, and of course I admit I don’t know the details of Jason’s diabetes (us type 1s are all different,) is that a 25k companion guide dog is just going overboard for the needs of a young newly diagnosed type 1 diabetic.
Type 1 diabetics can live a normal and healthy life. Normalcy is what we strive for. In blood sugars and in life. I don’t see carting dog around to school, soccer games, movies, band camp, first dates, drivers ed, and all the other events you live from age 6-18 as normal. Maybe for someone with an extreme physical handicap, but type 1 diabetes is not a that.
But although I disagree I’m still curious and interested - and I appreciate his journaling his experience for discussion, and your note too.
james…
May 6th, 2008 at 3:56 pm
Hi James,
My daughter was diagnosed with Type 1 diabetes with insulin resistance. She also has suffered from severe hypoglycemic unawareness straight from the beginning. She gets down to 25 before she feels anything; usually not in time to treat herself. She is nineteen years old now; and there have been many times that if I wasn’t with her she would have died. She has spent many hours in the emergency room because no matter how much glucose we pumped into her she still was too low. She does check her glucose levels every time she gets behind the wheel of a car and about eight times a day. Still, we have had lots of trials and tribulations. Her doctors recognize that she is doing everything she can and she is very responsible about her diabetes; and yet she continues to suffer more than most people with Type 1. Some people need a dog. As her mother, I will not allow her to live alone without a dog to help her. Maybe you have been lucky enough to never know the trauma of living with severe hypoglycemic unawareness; and I pray that you never do. With that said, I find your opinion on the subject ignorant of other people’s situations. Some people may need a life saving animal to help them. Technology can and has failed. When your life is on the line every minute of every day you begin to be afraid of trusting the technology that could still wind up killing you. My daughter needs help; many others with similar conditions might too. I hope you never find yourself in this situation. Please support those who are.
May 6th, 2008 at 4:49 pm
Hi Audra - What has your daughter’s experience been with constant glucose monitors such as the Paradigm Guardian or the Dexcom Warrior?
Although not perfect, these devices relay your blood sugar to you every five minutes, and just as important tell you when your blood sugar is rising or falling rapidly so you can take action and make small corrections BEFORE you’re too high or low.
For example in the past two hours I’ve watched my post lunch blood sugar meander down from 150 to 110, (sans insulin thanks to my 30 minute gym time,) and knowing my calibrations are running well today I haven’t needed a finger prick. If it keeps falling I’ll have a small snack before biking home from work in a few minutes, or if it levels out I’ll skip it and wait for dinner. Either way should it keep dropping I’ll KNOW its dropping, and take corrective action.
I realize I’m overstating the obvious - but its far more important to stabilize blood sugar levels BEFORE they reach extremes. For that reason a CGM is the ultimate tool, whereas a canine assistant will only alert you AFTER those extreme levels have been breached.
A dog may save a life, but a discrete CGM can prevent you from needing him/her in the first place.
In any case if Jay Cutler storms out on the field this fall with a Golden Retriever at his side I’ll just cease this discussion completely.
Thanks for the note - and best wishes to you and your daughter.