April 22, 2010

Thoroughly Modern Cake

The Millie cake is well in the works. We start assembly tomorrow.

Six pound cakes too many gumpaste figures to count.

Shows Friday and Saturday, the musical that is. The cake opens Saturday.

April 15, 2010

FTNW: Bluetooth BG & Nokia

From MobiHealthNews:

Nokia has teamed up with Entra Health Systems to release a similar app that works with a Bluetooth-enabled glucose meter and on more than 50 Nokia phones.
Officially, Nokia has inked a deal with Entra Health Systems to include Entra’s MyGlucoHealth app in the Nokia Ovi Store, but the app enables users to transmit blood glucose testing results from a MyGlucoHealth Wireless meter through the user’s mobile phone to a personal health record. Here’s the official description from the Ovi Store:

“The MyGlucoHealth Mobile diabetes management system permits blood glucose testing results on the MyGlucoHealth Wireless meter to be transmitted from your mobile phone to your personal health record portal using Bluetooth technology. Patients can also review their most recent blood sugar test results, view line charts, pie charts and histograms, as well as enter, fitness, weight, exercise and nutritional data.”

April 14, 2010

Mille, Modern, Throroughly

The boy has the lead in the school musical. Supporting the cast we are working on another 7,236 carbs.

Any YDMV readers in the Philly area who want to come see him and his schoolmates sing and dance shows are:

Friday, April 16, 8 pm
Saturday, April 17, 7 pm
Sunday, April 18, 2 pm
Friday, April 23, 8 pm
Saturday, April 24, 7 pm

Tickets are available see http://www.ancss.org/about/news/millie

Bonus points will be awarded to anyone who spots pump tubing.

FTNW: Roche Buys Medingo

OK I am late with the news but Accu-Chek buys the Solo MicroPump.

Reports are the Hope to have product to market by '12.  Word that Medingo had a buyer had been floating around for a while and yesterday Roche was publicized as the buyer.

The news was all over the internet yet somehow Mr. Asleep at the switch here missed it. In my defense I was working an a utterly ridiculous guest bit for SixUntilMe. Anyway it, the Roche/Medingo news not the silly post, was on all over the place - Business Week, Amy writes about it at the Mine today and Friend of the Blog Bernard wrote up a nice little overview of the system last August.

I think it is good news for Roche. Their Spirit pump isn't a widely used product here in the states. Europe get a snazzier version with a remote. They also get cooler Accu-Chek meters over there.  Anyway It is nice to see more competition in the pump market in general and the pump patch sub set of the market specifically. Nice to see the Solo get some marketing muscle behind it. Good to see Roche making move to be in the game. Most of all I am a big fan of more options for People with Diabetes, 'cause YDMV.

April 12, 2010

Type 1 Circus Act

For your amusement, high above the center ring, I will to go out on the high wire and attempt to juggle contradictory new stories about type 1 parenting and a few other bits into one coherent idea. With no safety net.

How hard can it be?

Parental involvement in type 1 care matters. Regular readers may note that just a few post prior to this I linked an actual science article an article that makes that very case. Be involved and all that stuff.

Now comes a story across the new wire (thanks for the tweet K2) that I like just as much and it seems to fly in the face of that prior bit. It says it right there in it’s headline “Child's diabetes control 'poorer when parents worry.

Ok so we are meant to be involved by not worried. What the....

I often mention Hunter S Thompson. His book Fear and Loathing in Las Vegas is a classic for its treatment of “The Fear.” Now I am not suggesting that drug induced paranoia is a goal or even a good thing. The book however is a funny if twisted exploration of, among other things, fear. It is nice to get the exploration of fear along with the funny which is what I read the book for. I know, shock of shocks I like twisted funny. Who’d’ve guessed?

The Fear doesn’t help. It doesn’t do anything for us. It doesn’t do anything for our kids and in the book it... well it is a character in the book as much as Thompson or his Attorney and it does tons for the narrative so OK it helped him a lot.

Way back in the early days of YDMV I wrote “kids can smell The Fear on you better than a dog.” In addition to Thompson there I quote the great philosopher Baloo the Bear. But in that that article I didn’t make a case for the damage The Fear can do.

Thankfully, here at YDMV, an even more sage thinker than Thompson or an animated bear recently spoke to the damage The Fear can do. Friend of the Blog K2 said, “I lied about my numbers, starting in the 6th grade- because I saw how sad, scared, and upset my parents got when my numbers were high.”

Yes it is a very natural reaction for parents to be concerned about blood and a wee bit irritated if kids lie about numbers. That pushes a few parental buttons. The don’t Lie to Me button. The Diabetes is Serious button and maybe most significantly the big red FEAR button.

Hold on. Take a deep breath and go back and understand K2’s comment. Her numbers game was a response to parental anxiety. AKA The Fear. Now I am in NO WAY saying that The Fear isn’t real, understandable, rational or justified. I mean no judgment or disrespect to K2's Mom and Dad - for the record I consider them super heroes. I am simply asking to consider what The Fear motivated her to do.

Mortality is not on an adolescents radar. The brain develops over time and the part that understands risk and mortality is not there yet in developing teens. I am sure there are enough actual sciency articles to make that case but how about we all just agree to hold that truth to be self evident. What kids have is the ability to be "VERY intuitive to others emotions." Like say The Fear or it’s evil twin The Guilt.

Kids love their parents. They see the fear and know it hurts their parents. Kids want the hurt in the parents they love to go away. When numbers vary (and new flash: numbers vary particularly when hormones and growth are crazy - a.k.a. adolescence) kids may be motivated, by love, to minimize The Fear they see in their parents with a lie.

My job as a parent is to take that motivation away. To not let my fear become their negative motivation. My brains understand mortality their doesn’t. So my job as a parent is to separate their good care activity from my emotions. To remove my emotions from the equation. Even the quiet little passive aggressive tones of voice and facile expressions. Numbers need to be numbers not measures of The Fear.

How the hell do I do that?

Well first I try to understand it. From that I try to manage the emotion.

I suggest that not only can I do it but that most type 1 parents already have. Consider this parallel, it is one all parents of Type 1 kids know. The feeling of, “You better be high or you are in so much trouble.” For the record here I am referring the BG type of high not the Hunter S. Thompson variety.

In this all so common scenario parents learn to disassociate our emotion over behavior and consider type 1. It takes time but in time we get it. Hopefully we don’t actually say the, "You better be high.." bit too many times but the point remains we learn to separate actions and feelings because of diabetes.

I suggest that the graduate school lesson here is to disassociate our feelings and adolescent behaviors. Don’t let the behaviors trigger emotional responses. Even the tone of voice and facial expressions.

In a turning full circle kind of way this gets back to one of the first posts I wrote for YDMV. Back in '07 I wrote a review of some Friends For Life sessions on working with teens. My take away then was, ‘We love them. They love us. As parents we need to lead the family away from the classic fights and into sing another tune of parent teen communication.

“Let the kids know you love them. Touch them. Tell them your fears as your fears knowing they may not share them. Oh and don’t hover over their shoulder while they test - Apparently it doesn’t make the meter read faster. “

Later in that same article I wrote about some of what I learned from Joe Solowiejczyk. “As parents we need to be consistent about boundaries. We don’t have to like diabetes. Our kids don’t have to like diabetes but just like dating or other household issues there are non negotiable actions, like be home at midnight, that have to happen or there are consequences. We can’t fall into the trap of feeling sorry about the diabetes and allowing slack on the diabetes care non-negotiables.”

What does it all mean? Well first of all it means I have been writing forever (and if you are still hear you have been reading forever) on a subject I wrote about ages ago. All this is just a repackaged rerun. Sorry about that.

Maybe though that isn’t so bad. These two recent articles really are stating what needs to be said over and over again. Parents of kids with Type 1 need to be involved with care. That doesn’t mean hovering and it most certainly doesn’t mean projecting our fear to be theirs. It does mean diabetes care should be talked about. It should have boundaries just like other chores. Our response needs to be clear, consistent and separate from our emotions. Nobody has to like it. We need to understand where they are in their mental development. Specifically that they are highly attuned to our emotions long before they appreciate their risks. 

There is no perfect diabetic. No magic mix of shots and carbs. So it stands to reason there is also no perfect diabetic parent or family.

I'll step out on the high wire and juggle and try to just leave The Fear behind.

Oh and I lied. There is a safety net. It's my DOC friends.

April 8, 2010

Navigate This!

Interesting reading over at CWD's CGM forum. Abbott is making calls, suggesting patients buy competitors products and making cash offers.


FTNW: A Good News Story on T1 Parenting

Diabetic teens do listen
When mom and dad get involved, kids better manage condition, study shows.

It's good and bad news: Parents matter when it comes to helping their diabetic teens stay healthy.

A University of Utah study found when parents become less involved in their teens' care of type 1 diabetes and when their relationship quality drops, teens are less likely to manage the disease.

Without proper management, diabetes can lead to blindness, kidney failure and heart disease.

But the reverse is true, too: When the relationship improves and when parents, say, monitor their children's insulin levels, the teens do a better job of watching their diet, exercising and testing their blood-sugar levels.

So what's a parent to do when they are supposed to start turning over responsibility to a naturally risk-taking teen?

Full Story Here

April 7, 2010

Parental Discretion Advised

The DOC has had a few rounds of the very worst news this spring. News of young members of the type 1 community passing away. These makes it all too clear, diabetes has complications. This is tragic news touches all of us who hear it.

Children with Diabetes hosted a chat with Joe Solowiejczyk last week. It was an oppertunity for parents to think about how to talk to their T1 kids about this tragic news. On that chat was one of my good friends Kelly Kunik, Queen of Diabetesaliciousness

After the chat, I sought out Kelly. Bear with me a second and I will explain why.

When our first child was born I looked around at my peers. Who exhibited the kinds of behaviors that I would like to see in my child when she became an adult? I then went and asked their parents what were the things they thought made for successful parenting. Here is a little YDMV tip: If your really want to flatter someone, ask them how they raised great kids.

The point was asking people I admire to share their experience to guide my actions as a parent.

This brings me to Kelly who I admire greatly. Kelly not only has type 1, some years ago she the horrific experience of a sibling passing away from complications of type 1.

Who better to learn from? I am honored by the trust and friendship she shows in sharing. Here are my  questions and the lovely K2’s pearls of wisdom.

YDMV: Kelly thanks for sharing. Before anything else can you tell a story that introduces you sister to us as a unique individual?

K2: WOW B, thanks for the kind words!  Are you sure your talking about me?!

YDMV: Yeah Kelley I’m sure. Everyone else will be too very soon.
(But folks you may need a Kleenex - make it a pack.)

K2: My sister Debbie was unique.  

She was diagnosed with type 1 in the late 60's, before I came to be - in the diabetes dark ages. Urine testing and restrictive diets were the norm, everything was off limits. She was a Hippie and a wild child.
She wanted to be like everyone else growing up in the late 60's and early 70's -wanting to experience and experiment. She could be impish and funny, and like any sibling, she could be a major pain. But she was my older sister and I loved her. She taught me how to ride a two wheeler and would take me to the beach in the winter and teach me the names of all the different shells.
Debbie had problems, some diabetes related, many not. I think her biggest problem was that she tried so hard to be what she wasn't (she hated being a person with diabetes and she hated diabetes, & had issues with being the middle child,etc) that she never could fully relish in the wonderfulness of who and what she was.

YDMV: In chat the other night there was conversation about how to approch with kids about type 1 and mortality. You said with, “Honesty and knowing that you won't be judged is big when your a teen, especially if your a teen with diabetes.” Can you elaborate on that a little?

K2: Being honest with any teen re: mortality is important, because teens believe they are immortal. As you pointed out in the chat room- "Being an adolescent is hard and they need to think they are immortal to survive it". True words were never spoken my friend! If you can say to your child: "Hey, your my life, and as a parent, I'm going to worry about you- diabetes or not. I'm afraid of losing you."

Ask your kids "How can we deal with this together?"  Seek out their advice on dealing with death. Let them know your there for them. 

YDMV: You spoke about kids with diabetes having old souls can you explain how you see that impacting our conversations with kids on this difficult topic?

K2: Actually Joe S is the person who initially said that statement and I agreed with him 100%!  I truly believe CWD (or children with any chronic illness) have old souls because they are REQUIRED to deal with a disease at a very young age. They learn empathy VERY quickly. Children with diabetes are also VERY intuitive to others emotions and reactions and they learn and understand what it's like to be different. Empathy understanding, & intuitiveness are gifts and we take those gifts with us into adulthood.

YDMV: Another line of the chat conversation was the impact of news like this on teens who are rebelling poor diabetes care. In summary people were asking if the news would help scare kids to better compliance. What are your thoughts about fear (and if you are game how did you feel about your own diabetes after you sisters passing but that may be crossing a line - your call.)

K2: My whole young adult life I was told to learn from Debbie's mistakes. My parents told me, my Dr's, my friends parents, EVERYONE. I gotta be honest B, I didn't buy it- I didn't believe it could happen to me. I saw my sisters struggles with alcohol ( she was in recovery the last 8 yrs of her life) and I thought: I'm not going to be an alcoholic, I won't have those issues."

It wasn't until I was in my mid 20's that I realized that diabetes caused her death, not her addictions.   I grew up in a diabetes pressure cooker, I wanted to be normal - just like Debbie did. The difference is, she wanted so badly to be normal, that it stirred up other issues. I was very lucky that I learned that everyone had a different view of what normal was- diabetes or not. I always was very comfortable with being "the kid" with diabetes in my grade, middle,  & high school. I was uncomfortable with other things, like looking like the geek I was.
I was lucky that my parents said "Hey life with diabetes is your normal. It's not going anywhere- you have to learn to work with it." My father was a type 1. So is my oldest sister Donna and her son Brendan.
My dad told me when I was diagnosed that I needed to work WITH diabetes if I wanted to live an independent life. And I was fortunate that my parents let me actively participate in my disease. I got to pick if I wanted to have a potato or rice at dinner time, I learned to inject a month after I came home from the hospital and refused to let anyone else do it. I was proud of myself for being able to inject- and I secretly got a kick out of amazing my friends!  I learned to test my urine- and that really worked for me...for a time. But  Bennet, I made lots of mistakes as a preteen. I lied about my numbers, starting in the 6th grade- because I saw how sad,scared, and upset my parents got when my numbers were high.
The whole intuitive thing came to play re: fudging my numbers.
I knew my diabetes was causing pain for my parents and I felt they were under so much stress with diabetes due to my sister- so I fudged.  CWDs see the look of pain on our parents faces - and I have to tell you Bennet- It breaks our hearts to see our disease cause our parents so much anguish.  

Do I wish I hadn't lied? YES I DO, OF COURSE.  But I wanted to make them happy - I wanted to make everything all better. My mom told me years later that she wasn't mad at me, she was mad at diabetes and she felt terrible that in trying to be so good and perfect and protective, I felt I had to lie.
YDMV: What did your parents do right for you after your sister’s passing.

K2: B- My families world almost collapsed  when my sister passed away. You couldn't write what happened to us. My sister died on Tuesday morning. The Thursday before I put my mother in the hospital for going into a-fibrillation and that Friday I put my sister in another hospital (where she went for  dialysis 3 times a week) because she was sick and I couldn't take care of her by myself - I was in college- I was afraid.

My father was away in San Fransico for work and couldn't get a flight home until Saturday night. We were called to the emergency room at 2 am Sunday morning and the Dr's told that my sisters lungs were filling up with fluid. It was horrific. My sister was dying in one hospital and my mother was having major heart problems in another. Tuesday morning as my dad was about to follow my mothers ambulance to Philadelphia, the ER got a call and found him in the ambulance bay. They told him his daughter had died at the the other hospital- 10 miles away.  I came home from the first day of winter semester to about 15 messages on my answering machine that told me nothing- and everything.
I didn't know if my sister or my mom had died.  We couldn't tell my mom that my sister died because she was having heart surgery. SHe didn't find out for 5 weeks and missed Debbie's funeral. We all were shell shocked by the turn of events. We all just dealt with the shit storm anyway we could.  We went through the motions of life. I wish I'd seen a therapist- I wish we all had. But we were just trying to get through one hurdle after another.  

My parents taught (and showed me) during this time, that terrible things happen in life, but we have to keep going because the world refuses to stop because our  heart is broken.
YDMV: Yet your writing has a clear joie de vivre - what part of that is Debbie?

K2: I'm not really sure. There are certainly elements of my sister in me. She loved to laugh, everyone in my family has a (most say sick) sense of humor. For a long time after her death I was afraid that what happened to her could happen to me. But I moved past that fear - thankfully.
Sometimes I think I live for us both. I wish she'd had the opportunity to experience the great support system PWD have today.   I wish she could have experienced the diabetes freedoms that we take for granted now. There's a lot of things I wish.
When I think about Debbie, I think about the good and the bad- and learn from those memories. But mostly I try and think about her  laughing, because when she laughed, I loved her the most.
YDMV: You get seven words to sum up (As if "When She Laughed, I Loved Her Most" isn't already  perfect.)

K2: Everyone has "issues." OWN YOURS. Learn & Laugh often!
Yeah- that's more than 7 words- but I think you'll be OK with that ;)

April 6, 2010

FTNW: Diabetic Tests Must Be Regulated, Experts Urge

What is glycemic numeracy and are these tha same experts who figure +/- 20% is OK?

Oh and why are policy makers listed before patients?

ScienceDaily (Apr. 5, 2010) — As a benchmark for diagnosing diabetes, the importance of the A1C test must be reevaluated to improve glycemic numeracy of policy makers, patients and providers -- who must make real-world decisions. This is based on a commentary published by Wiley-Blackwell in the Journal of Diabetes.

Of Mice and Men: Spontanious Beta Cells

Some Cells in Pancreas Can Spontaneously Change Into Insulin-Producing Cells, Diabetes Researchers Show

ScienceDaily (Apr. 6, 2010) Alpha cells in the pancreas, which do not produce insulin, can convert into insulin-producing beta cells, advancing the prospect of regenerating beta cells as a cure for type 1 diabetes.
The findings come from a study at the University of Geneva, co-funded by the Juvenile Diabetes Research Foundation, that is published in the online edition of the scientific journal Nature.

April 5, 2010

FTNW: mHealth in Spain, France

From MobiHealthNews: Carriers pushing mHealth in Spain, France

Bluetooth glucometer: Vodafone owned t+Medical has already conducted 20 clinical trials with healthcare providers in the UK, US, and Dubai. One of the trials includes the use of a Bluetooth-enabled glucose meter for diabetes patients. The study found the patients improved their blood sugar levels when using the device and it also helped physicians monitor more patients.

April 3, 2010

Dear Kerri II

I found the picture. Well not the one with the cat.

This is the cat. I think it is clear how it got named Snotty.

It is also clear film school was in the cards from the git go.

- Posted using BlogPress from my iPhone

Dear Kerri

I tried to post this on your Facebook wall. It wouldn't post. Good move on your part.

It is in no way a nice spring day (as far as you know) outside and you shouldn't be too bummed about being stuck in a hospital bored out of your freaking skull.

Just to distract you a little I'll tell you a story.

Just about 19 years ago (exactly 19 on the 27th of this month) a little girl was born. She was a little on the yellow side and we had to keep taking her back to the dealership, err hospital, for warranty work.

They would draw a little blood. (Doctors suck at it BTW.  Nurses know what they are doing.) She would scream. We would shrink. They would blame it on Billy Ruben.

I don't know who hell Billy was but I was ready to sock Mr Ruben right in the kisser.

After a while they decided to send a nurse to our house to test the blood. This was a lot easier than driving an hour to the hospital. Then they decided to wrap the kid in a funky blanket attached to a thing that looked like a canister vacuum cleaner.

Sounded like one too.

It had all kinds of Fiber Optics. I guess it was like FIOS. (Maybe Billy Ruben is that guy on the Verizon ads - The smug know it all cool TV installer.) Anyway with the belt fired up for awhile Billy Ruben stopped messing with the kid's blood. She turned more of a pink shade.

While she was light up she looked a lot like a Christmas Tree. So I put decorations on her. Somewhere I have a picture but lord knows where. I think there is one with her all light up, an ornement and the cat sitting there wondering what was going on.

Yes we had a cat. It's name was snotty. Good name for a cat.

All these years later I get messages on my Facebook wall from the kid. One came with a link and suggested that my spelling makes me a likely candidate for the Tea Party and while I didn't really appreciate it, I couldn't argue with the logic.

Most of the time I don't remember old Billy and the Vacuum of many lights. To much other cool stuff in between. So soon you will be un-bored and will forget most of the time all about the lovely hospital stay.

You will get to enjoy the joys of parenthood. A word that for a few years means poop.