Sunday, March 31, 2013

Novalog to Humalog. Oh joy...

Back in January I went online to order insulin for Sarah, and the website told me that we were no longer eligible to purchase Novalog, and would instead receive Humalog. Okay, good to know. A little warning from Kaiser might have been nice. So I asked people who have previously made the switch if I was likely to see any difference. The responses were basically:

"No, they're identical"
"There's a slight difference"
"There's a huge difference"
"Humalog is like water, doesn't do a thing"

I had a stash of Novalog in the fridge, so we started with the Humalog on 3/13/2013. And here's our experience, based on the first week of the month and the last week of the month, so a week before we started Humalog, and our full second week on Humalog.

Glucose in range
  • Pre-Humalog: 76% in range with 15 over and 9% under
  • Humalog: 68% in range with 38% over
Average Glucose
  • Pre-Humalog: 142 average
  • Humalog: 177 average (and keep in mind that this required a LOT of extra insulin)
Average Insulin
  • Pre-Humalog: 29.1
  • Humalog: 35.5
And in case you're a visual person...

Pre Humalog (on Novalog) - 3/1 to 3/8/2013

 Change to Humalog - 3/25 - 3/31/2013

So our conclusion? Humalog definitely isn't working as well. We have been CONSTANTLY increasing both basal rates and IC ratios, and I've reduced insulin sensitivity twice. I reduced duration from 3 hours to 2.5. We're still dealing with highs, no matter what we do. 

Clearly, there's really no difference...

Friday, March 29, 2013

Wanted: Smarter diabetes technology

You know what I want? I want a REALLY smart pump/meter/bolus calculator that learns. Wouldn’t that be amazing?

What if you could tell the device what you’re eating, and based on your pre-meal bg and post meal bg, it could better anticipate what you need next time!


Bg 120
Insert bowl of ice cream, 30g – regular bolus for carbs, say 3units (IC: 1:10)
1 hour later – bg 82
3 hours later – bg 140
4 hours later – bg 180 – correction given
5 hours later – bg 240 – Correct again

Next time you eat ice cream, what if you enter the food, and that it’s 30g. And your device remembers what happened last time and suggests something like:

Dose 4.5 units
Combo bolus 60/40
3 hours

And based on however this goes, the device makes adjustments for the next time. I think it’s going to be awhile before we have a cure, but why couldn’t someone invent a device that remembers types of foods, results, and provides advice based on past experience.

Just saying, but whoever is smart enough to make this happen would probably make a killing, and have the adoration of parents all over the world...

Thursday, March 21, 2013

...5:30 this morning...

My interpretation of Scout this morning when he woke us up around 5:30…

“Mama, something woke me up and now I’m hungry. Mama, mama, mama, mama, mama…"

The nose goes up and I can see the wheels start to spin faster…

“Emergency Mama! My girl is HIGH!


And now he’s practically bouncing on the bed.


…and then give me a party because I’m a good doggie…”

And she was 207, which is definitely not the norm for morning numbers for her. I’m starting to get annoyed with our switch to Humalog…

Sunday, March 17, 2013

3 Years...

How do you measure... measure a year...
In test-strips, in blood-checks, in carb counts, and lots of coffee. In research... in doctors... in insulin vials...

It has now been three full years since Sarah was diagnosed with type 1 diabetes. It's been a full, busy, and amazing three years. So let's just reflect on some of the highlights...

March 18, 2010 - she was diagnosed on a Thursday. She was about 68 pounds at diagnosis, and had lost 5-10 pounds over the previous months. I took this picture of her about three weeks before she was diagnosed.
February 25, 2010
March 22, 2010 - back to school. The school nurse (who handles about 10 schools) had to visit Sarah's school every day to give her a shot before lunch. She also returned to theater practice today, learning her lines and her songs for Runaway Stage Productions Cinderella Kids. Within two weeks Sarah, who had been seriously needlephobic her whole life, was giving herself shots everyday at school.

May, 2010 - Sarah performed wonderfully as Cinderella. Diabetes didn't slow her down at all. I packed lots of snacks, and checked her blood sugar during each intermission.
Sarah as Cinderella

The day after Cinderella ended, we flew to Ohio to a memorial for my grandfather. From Ohio we traveled by train to spend a few days in Washington D.C. This was a little more challenging because we were forced to eat in restaurants. I believe we experienced our first "high" blood sugar, somewhere in the high 300's, while we were in D.C. At the time it was a "freak out" moment for me, but since then I've learned to roll with the occasional 300's. As long as we catch them quickly and provide the right amount of insulin, they are short lived.

Sarah and her grammy, resting their achy feet in D.C.
July, 2010 - When we got home, Sarah went straight into practice for her next show, Guys and Dolls - in which she was cast as a "hotbox girl" (third from left). She had a blast dancing up a storm.

October, 2010 - Sarah sang "Candle on the Water" at the American Diabetes Association's Sacramento walk to STOP diabetes.

December, 2010 - Sarah sang 15 songs at a party put on by the U.C. Davis MIND Institute.

January, 2011 - Sarah played an Ancestor in Mulan.

March, 2011 - Sarah and I traveled to Washington D.C. to appeal to Congress to continue to fund diabetes research. We spent our last day there with Sarah's penpal, Megan (who also has type 1 diabetes). Both girls were ecstatically happy!

In June, 2012, Sarah sang nine songs for an enthusiastic crowd at her own Applause for Paws fundraiser, to help her with the costs of a diabetes alert dog.

In 2012 she fell down the rabbit hole as Alice in Alice in Wonderland.

She played a little sister (something she has some experience in) in Fiddler on the Roof.

She played one of MANY sisters in Pirates of Penzance.

In 2013, she got in touch with her inner guppy as Flounder in The Little Mermaid.

She kept the story flowing as a narrator in Aladdin.

And on February 24th, she brought home a new best friend and protector, her diabetes alert dog, Scout.

Sarah singing Deep River, the week she brought Scout home.

Over the last three years Sarah has shown me what true perseverance looks like. She goes through life with her eyes wide open and a beautiful smile on her face. She checks her blood sugar 10-15 times a day without complaint and counts carbohydrates like a champion. Diabetes is a constant companion, but Sarah keeps it shoved deep down in her bag and smacks it around as needed.

I imagine diabetes looks a lot like this around Sarah...

Sarah, you are my hero!

Friday, March 15, 2013

Early observations on life with a diabetes alert dog

Sarah’s diabetes alert service dog, Scout, moved in with us February 24th, 2013 - so just about three weeks ago. Scout is exactly what we’d hoped for in a service dog for Sarah. He’s very smart and does a great job alerting her to high and low blood sugars. But he’s also goofy and sweet and sometimes just downright ridiculous (thank goodness he saves the ridiculous moments for home!). We wanted a dog that Sarah could enjoy being with, and who would enjoy being with her. Scout fulfills all those requirements. He’s fun and cuddly and silly, and all business when he needs to be.

Sarah and I joked after a few days of taking Scout on all of our outings about making her a t-shirt that answers all the questions people constantly ask. It would say:

· No, he’s not in training – he’s working

· Please don’t pet him, he’s working

· He’s 20 months old

· Yes, he’s well trained, thank you for noticing

· No, I’m not training him for someone else – he’s my dog

· Yes, I have type 1 diabetes and my dog is no reflection on my “control”

· Yes, I DO have an insulin pump – but it doesn’t “control” my diabetes or monitor my blood sugar.

We’ve had previous experience with service dogs while volunteering with guide dogs for the blind, and also while training with Scout and other dogs, so we knew most of what to expect. I would venture to say that the following suggestions are probably true for most service dog teams:

We expected to be asked a lot of questions by the public, and of course that has been our experience. While we don’t always mind stopping to answer, and we love talking about how amazing Scout is, there are also times where we are just trying to finish our grocery shopping, take a walk, or otherwise finish our day. We have a schedule, especially with all of Sarah’s activities. Please don’t think it’s rude if we give you a short answer and excuse ourselves. We are not out and about for your entertainment; rather, Scout is with Sarah to keep her safe while she goes about her day. (And in reality I am usually happy to talk, unless I have ice cream dripping out of my grocery bag)

Please don’t ask to pet the dog. I know he’s really cute, and it is super tempting and you just want to cuddle/snuggle him. But he actually has a job to do, and it’s not fair to Sarah to have to constantly tell people “no”. And no, we aren’t being rude when we tell you that you can’t pet him. Petting affects his ability to focus on Sarah, and that is his job. Think about your workday. While you’re sitting in your car, at your computer, or otherwise working; how distracting would it be if some random person you didn’t know came up and just started putting their hands all over you? Would you be able to keep at your task without missing a beat, or would that possibly divert your attention away from your job? And on the heels of that request, drive by petting is definitely a huge no no. Don’t do it. Just don’t.

Don’t ask personal questions about Sarah’s medical condition. Trust me; she spends a lot of time answering those already. Don’t assume that because she has a dog she can’t control her diabetes – she’s just controlling it differently than that person you know. If you’re a close enough friend to know, you already do and of course we don’t mind explaining further. If you’re a random stranger, leave it alone already because it really isn’t your business.

Don’t tell us how lucky we are to take our dog into restaurants, the theater, etc. Instead, consider how lucky YOU are that you have no reason to need a service dog. I would love nothing more than for Sarah to never again have to feel as horrid as she does in the midst of a low blood sugar. I never want her to have ketones again, as that was just so beyond awful I can’t even describe. Scout’s job is to help keep these at bay by alerting us early and before Sarah feels the symptoms. Yes, we are so fortunate to have his help, but Sarah is not “lucky” to deal with diabetes 24/7 for the rest of her life. Not by a long shot.

Please don’t think that poor Scout is overworked. You may not love your job, but I can assure you, Scout loves his. His job is to hang out with his people all day, every day. And most of the time that’s what he does. Instead of being at home alone like most pet dogs, he gets to be with his peoples! What more could any dog ask for? But beyond that, when he does his job and finds a high or low blood sugar, he gets a party, just for him. Wouldn’t it be cool if you got 2-3 parties every single day, with cake and presents? Well that’s what Scout gets. He gets parties with the best present in the whole world; a squeaky ball and lots of extra love and affection. And if you saw him during a party, you’d know that he is absolutely over the moon happy.

All that said, we LOVE having Scout with us. He’s young, and we’re inexperienced, so we’re all learning together to help him do his job. But he’s amazing in so many ways. Scout is very smart, and even though he can’t talk, he is an excellent communicator. He knows just when Sarah needs a hug, and will just press his whole head against her for a bit. He’s still working on not being tempted by food and other things dropped on the ground, but it’s fun to watch him see that potato chip and remember that he’s supposed to ignore it. He turned to look at Sarah and his eyes say “I saw that and I knew you didn’t want me to eat it, so I didn’t. I’m a good boy. Can I have a cookie?”

And when he’s detected a low or high blood sugar, he makes sure we know it. And sometimes when she’s just right on the verge, he just stares at her for awhile, trying to decide, or waiting until the right moment. He also knows to keep his alerts much mellower when we’re not home, and at home he gets a big crazy party.

So far he’s been to:

Live theater at the Sacramento Convention Center

IMAX to see Oz, The Great and Powerful

Sarah’s theater classes

Sarah’s voice lessons

A bowling alley

Several restaurants


Mom’s work

The grocery store (many times)

The mall

Fairytale town (kids park)

Old Sacramento

Probably lots more places I’m blanking out on

And on each outing he’s made us proud. We love you Scout!