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Entries in Guest Post (18)

Wednesday
Jun192013

The 13 Rules of Paternus Domesticus

Immediately after taping ended for the segment of 'Katie' that I will be appearing on today, Ms. Couric looked at me and asked if I would write a blog post for her blog at KatieCouric.com... And so I did!

You can check out 'The 13 Rules of Paternus Domesticus' on Katie's blog here.

Monday
Jun102013

My Diabetes Mine guest post

 

 

A big thank you to Mike Hoskins and Diabetes Mine for featuring me today on the site for Father's Day! In addition to some nice words from Mike about my book you'll find a guest post from me titled, "The Outcome Is Not Important" and a giveaway.

I hope you get a chance to surf over and check it out... Diabetes Mine is one of the great sites and Mike's writing is top shelf - spend some time there (after you read my bit).

Monday
Mar112013

Guest Post: Moira McCarthy on Undiagnosed Diabetes

Know the Signs. Share the Signs.

After I read Moria's post last week titled, Undiagnosed Diabetes and a Plea to Take Action (The one where I go all public service a again), I contacted Moira to see if she would allow me to repost her important words in their entirety. She was happy to oblige. Many years ago I was a parent who was unknowingly watching his daughter slowly die from undiagnosed type I. When we arrived at the hospital the doctors told Kelly and I that we figured out what was happening with about twenty-four hours to spare. They estimated that Arden was only a day away from slipping into a coma. I wanted to share this message as far and wide as possible in hopes that it may help another family to avoid an unthinkable heartbreak. I hope that you link to, like and share this information liberally.

Moira's piece just as it ran on her site last Friday.

Be well,

Scott

 


A week ago today, a 13-year old boy who lives in a normal middle class town and has smart, caring parents and who is surrounded by teachers and nurses and coaches a friends, died of the complications of undiagnosed Type 1 Diabetes.

 

And it happens all the time. When it happens, people say all kinds of things. Why didn’t the parents know the symptoms? Didn’t the doctor do a test at his annual check up? How could the school not see?

But here’s the stark truth: We are not properly equipped as a society to keep this from happening. And happening again. And listen: we are America. We have free internet just about everywhere and fresh cupcakes out of kiosks. Yet we don’t have even a basic system of information that alerts parents, teachers, nurses, doctors and just plain everyone to what the signs and symptoms of Type 1 diabetes can be.

Think it only happens to the clueless? Look, I’m not Einstein, but I’m relatively smart. I read lots of parenting books and even edited a parenting publication. I’ve sat down and interviewed T Berry Brazelton and yes, even Dr. Spock (not the Star Wars one, silly!) before he died. I’ve met Fred Rogers and talked parenting, and I always had a mom group for discussions as my kids grew up.

But undiagnosed diabetes very well could have killed my daughter. I shared our diagnosis story HERE but I’ll remind you of this:

Lauren had almost all the classic symptoms of Type 1. Excessive thirst. Urination issues. Weight loss. Irritability. Now let me tick those off in the head of the average parent who has never been educated about the signs of Type 1 Diabetes.

*Excessive thirst: It was the end of summer and a hot one at that. Lauren and her friends were always running around and playing. Yes, she was drinking a ton, but to me, it was the heat. I chug down water as it is. Made sense to me. Even if it was kind of odd.

*Urination issues: I know it sound silly now, but I never sent either of my kids to pre school. I took a lot of heat for that on the playground. Moms were always saying my kids would never catch up and that they’d be traumatized when they started kindergarten because all the other kids would be so well adept and my kids would be floundering. So when Lauren started wetting her bed, a friend said, “I told you that no pre school thing would take its toll.” Kindergarten was the reason. I was a bad mom. I actually believe that. I wasn’t alone there. Her kindergarten teacher – whom I adore and still do – pulled me aside one day when I was in volunteering and said “I don’t think Lauren likes school. She’s constantly looking for reasons to leave the room. It’s the water fountain or the bathroom. You might want to talk to her.” This is a top-notch teacher, by the way.

*Weight loss: She was growing taller. And thinner. I (believe it or not if you know me now) was always rail thin. My husband still is. So to me, it was just how she was growing. It was not until her school pictures (taken three days before her diagnosis) came back; Lauren with her weak smile and her clothes almost falling off her, that I felt shame. How could I not have seen it? But I didn’t. When you are with a child every minute, the change might not be as noticeable.

*Irritability: The week before her diagnosis I was absolutely convinced I was a horrible mother and that somehow, I’d done something to morph my delightful child into a monster. At my older daughter’s soccer game, I was so at wit’s end with her behavior that a friend separated us and took her for a ride. A few days before I had lunch with my dear friend Jean. Lauren came along. Jean bought her a giant cookie and Lauren said she’d take it home. When Jean got home she found it in the car, forgotten. And thought about how oddly Lauren had behaved that day. Not like the kid she knew. When it all went down Jean told me she remembered thinking “strange. Something is strange.” Jean has four amazing kids Even she did not see the connection.

It was all right there in front of me. My daughter did not die. That god in heaven she had an annual check up scheduled (which I almost carried her into and she was rushed to the hospital from). Would she have woken up the following morning had I not had that appointment? Thank goodness I’ll never know the answer. And if she had not had that appointment, would I have caught on enough to call her pedi? I don’t know. (I will say this: the moment I got in the door of the pedi’s that day and rattled off what was going on, they KNEW. That office would never have not made the diagnosis if I’d been educated enough to know the symptoms).

So let’s say her check up had been six months before. Would a screening or test at that have shown Type 1? Probably not. Type 1 can come on slowly, but it usually comes on pretty quickly. So while I absolutely believe that screening should be done at each and every check up, it’s not nearly enough.

What we need is a way for everyone to know the symptoms. So share this. Share it with your teachers, your nurses, your doctors and your friends. Any time you have a friend with a child who has a stomach bug or even one symptom, mention Type 1 diabetes and ask them to read up on the symptoms.

And to take it a step further: call on all the diabetes centers, programs, charitys and groups to step up their symptoms awareness programs.

Do this: Become vigilant. Overreact. Obsess if you want. If you know someone who you see symptom(s) in, force them to take action.A blood glucose strip costs a buck. I’d pay that times a million to keep that person alive. Because even if we just save one single child from a completely unnecessary death, we’ve changed the world.

I’m a caring, capable and educated mom, and yet: It could have been Lauren. Luck is what saved her. Let’s save the rest of the world with something more solid: Knowledge. We are better than this. Let there not be one more unnecessary, completely avoidable death from diabetes.

 

Tuesday
Feb122013

The Diabetic Problem

Arden's Cover Page

It seems that this is the day. Arden asked us last week if she could post something that she wrote at school on Arden's Day. After some serious consideration, we said yes. The following is Arden's 3rd grade writing project. Her assignment was to write a piece of Realistic Fiction, a story that could feasible happen. Be sure to read Arden's Author's Note (Her words, she actually said, "I want to write an author's note after my story) that follows the story.

 


'The Diabetic Problem' by Arden Benner

 


Ever since Emme's doctor told her she had diabetes she changed. Now she always had to test her blood sugar. She has to give herself insulin and when someone asked what she was doing, she always had to tell them. She was getting TIRED of it! The worst part of all, some kids even made fun of her! She did not want to test her blood sugar anymore or give insulin to herself. But what would she do about her diabetes... What would she do?

 

She went to school the one day and decided to sit at the "cool" table. She did not test her blood sugar or give herself insulin. In the middle of lunch she passed out on the cafeteria floor! One of the girls that always picked on her, Mackenzie, went for help. Emme went right to the hospital. She woke up the next morning and her whole family was there. She saw something in the corner of her eye. She looked to her right and saw the girl that helped her when she passed out.

Emme looked straight at her and said, "Thank you". The girl looked right back at her and replied, "you're welcome", then the girl gave Emme a hug. Emme asked, "why did you help me, you hardly know me?"

"I may not know you but I've been through this before, my dad has diabetes" replied the girl. "Just last week my dad had a scary incident like you did in the cafeteria".

"Really", replied Emme. The girl hugged her again.

The next morning Emme woke up surrounded by her family. She had a great idea and said, "Maybe we should all go into school including Mackenzie and... TELL THEM WHAT DIABETES IS"

Everyone thought that was a great idea and so they all went to school that day.

Now they know what it means. They asked so many questions. How did you get diabetes? Is there a certain reason that you have it? Why do you have it when no one else in your family does?

"All I know is diabetes choose me... I didn't choose diabetes", Emme responded.

From that day on her classmates were a lot nicer to her.

 

Author's Note: Hi this is Arden. I am going to tell you a little more about my story. This story was kind of based on my life, but I have never been treated this way. I want to thank my dad for making this blog and for telling the kids in my school about diabetes so that I don't get treated poorly like the girl in my story. You should not read this story and think that it was just cute and kind. I think this story is more about how nice my family is and how well they treat and help me. I want to thank my dad Scott, my mom Kelly and even my brother Cole for taking such good care of me. Thank you. - Arden Benner

Emme and Mackenzie

Wednesday
Jan162013

A Day in the Life of a Diabetes Dad

I want to thank the Co-founder and President of Diabetes Daily David Edelmann for inviting me to contribute periodically to his wonderful site. Moreover, I want to thank him for understanding when I expressed my desire to repost on Arden's Day, in it's entirety, my work after it had run on his site. This is not the norm and generous of David to agree to. Reposting is not an attempt to "double-dip", it is being done so that all of my diabetes writing can be housed on Arden's Day for reasons of backup, cataloging and posterity. Please know that I was not paid for writing on Diabetes Daily nor did I compensate them. With that said, here is my second piece for Diabetes Daily as it ran on December 26, 2012.

What do you imagine was the most difficult aspect for me when I sat down to tell you about a ‘Day in the Life’ of a child and her father who are living with diabetes?

The most difficult part was deciding where to begin chronologically…because our day never really ends.

Since I’m not a fan of blog posts that read like log books, I’ll spare you the “7:15… my alarm goes off” style that comes to mind when you hear, ‘Day in the Life’ and instead tell you a few stories that will bring you closer to understanding a typical day as it plays out in my head, heart and home.

My daughter Arden is eight years old. She’s had type 1 diabetes since a few weeks after her second birthday. I have been a Stay-At-Home Dad for coming up on thirteen years. Before diabetes, morning were hectic, but now….

Drag a comb across my head:

I wake up each day one hour before Arden so I can make adjustments to her blood glucose if they are needed. I decided a long time ago that I would always do my best to make sure that Arden can begin each day with a steady and in range BG. I don’t have type I so I don’t know for sure, but I’ve spoken with adults who do and their descriptions of high and low BGs is heart wrenching. I can think of no worse fate then not feeling in your mind and body like yourself. So even though I know Arden’s BGs won’t be perfect throughout the day, I make sure that she doesn’t have to wake up feeling less then what she deserves.

I make adjustments to her BG around 6:30 am. That’s usually enough time to coax a high number down or a low number up with a negative temp basal. That way when she wakes I can pre-bolus for breakfast, giving her Apidra time to begin it’s fight while she runs through her daily fashion routine. I like to see at least a diagonal arrow down on Arden’s DexCom G4 before she begins to eat breakfast.

#&@#*&$ breakfast is a bitch isn’t it? I’ve taught myself how to let Arden have what she wants in the morning while mitigating her BG spike. It took a long time to find the combination that held that spike down without causing a low three hours later. Most days my system works, but you know, sometimes not so much.

I just became comfortable this year with a lower BG and descending CGM arrow as Arden steps on to her bus. I know that the food will quickly play it’s part during that ride to school, I trust the science of it now but that trust took years to build. Somewhere along that bus ride, the dance begins. Some days I lead, some days diabetes leads. Each new day is a surprise that I meet with a calm that only years of living with diabetes can lend to a person. “Here we go,” I hear those words in my head as Arden walks down our front lawn everyday. Here we go!

Arden is in third grade:

This is a big year for us in regards to diabetes management (sorry, I know some don’t like calling it management, I don’t particularly like it either but it makes the point) in school. During Arden’s first three years she would visit the nurse at every BG check, bolus, and before and after activity and food. This year is way different and very exciting. Arden carries her cell phone with her throughout the day and she and I converse, mostly through text message, making decisions about testing, food, and everything else. She has yet to visit the school nurse this year for one, not one, diabetes related issue. It’s like the coolest thing ever!

Arden’s phone has reminders set and she texts me the information that I need to help her make decisions about her diabetes management. If the reminder doesn’t get her attention, thats okay, my phone has them too. Most conversations go like this:

Arden: 127 diagonal up (we use an emoticon arrow)
Daddy: Okay, let’s look again in 20 mins.
Arden: Now it’s 150 and steady.
Daddy: Leave that, text again at next reminder.
Arden: k
Daddy: Love you.

Arden carries a small bag that holds her phone, OmniPod PDM, lance, a juice box, bit of candy and extra supplies with her throughout the day. We briefly speak before lunch to talk about her bolus and if she feels like she can finish her meal. It’s a lovely way to do things that wasn’t easy to set up on the school side, it took time and patience but I’m so happy that I handled things the way that I did. We’ve slowly built a solid relationship and no one is happier then the school that Arden is no longer missing class to visit the nurse.

If I struggle with BGs, and of course I do, the worst time is after school:

The bolus that is needed to hold down a lunch time spike is bigger then I’d like because there is no opportunity for Arden to prebolus the meal. Recess is immediately before lunch. No big deal but it does leave her CGM line drifting down around 4:30 p.m. It’s a slow decline but one that needs to be addresses with food. I can’t make basal changes to help because, as anyone with diabetes can tell you, it doesn’t happen consistently. I strongly dislike the pre dinner snack. I frequently under value the carbs or the bolus doesn’t have time to work before dinner. Something always gets askewed this time of day.

Dinner, practices, homework, shower, bed:

If only it were that easy. Dinner bolus, I am always later with that bolus then I want to be. Then there’s that small but normally stubborn post meal spike. Nothing of course makes homework more of a chore then it already is then a high BG. During the spring and summer Arden has softball, during the winter, it’s basketball. My son Cole has the same schedule and so this time of day goes by the fastest, it’s the most difficult to maintain control of and It sucks.

Dad, I’m hungry:

The bedtime snack adds three more hours to my management day, “three hours,” who am I kidding, it’s more like five. We always get a nice pre bolus in before a bedtime snack but Arden’s BGs can be difficult at this time of night. It’s a literal crap shoot. The correct amount of insulin is always either too much or not enough. On the evenings that everything actually works out as intended, I genuinely don’t know what to do.

It’s between 9 p.m. and 2 a.m. that I get the most done around the house. Laundry, dishes, a little TiVo. I’m generally exhausted by 10 pm having spent my day literally living my life and mentally walking through Arden’s, but this is not the time to rest. Diabetes keeps on chugging along. Having a CGM makes the entire exercise significantly easier. Back in the day I’d be sneaking into rooms to test at set intervals, now those test are less frequent and the new DexCom has a great signal range so often I can keep it with me, eliminating the need to run back and forth to Arden’s room.

With some luck Arden won’t need more insulin after she has gone to sleep, but I’d estimate that she does about three times a week. I don’t go to sleep until I’m sure that there is no more active insulin in her body. On good nights I hit the pillow around 1 am. Most nights it’s 2, but 3 or 4 isn’t unheard of.

I’ve taught myself to live well on five hours of sleep, I normally get those hours between 2 and 7 am. It’s all worth it when Arden wakes up in range.

I guess that is why I choose to begin this story in the morning, not because it’s the beginning to my day chronologically, my days don’t feel like they begin or end. Quite honesty, my days haven’t felt like they’ve reset since the day Arden was diagnosed.

I think that I choose the morning because her face renews me everyday when I see her open her eyes feeling like herself.