August 30, 2007

Perspective and Pendulum Peril

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In response to As Seen on TV – Not Unicoreman said... “I guess you’re a glass half empty kind of person.”

He goes on to write a very good long term perspective that points out a dozen or so test a day are a blessing. That’s an outstanding point.

As for half empty, well on occasions I maybe, reading back I see that in that post. I hope that is not the tenor of the totality of this blog.

My intent was not to see testing as half empty, rather to look at one aspect of what the years of testing have done to me.

Much of life is swinging about a balance. Lord knows trying to find the balance without too much swinging is what diabetes care is about. The point is to can have a life and not just live. I am all in favor of that and I think for the most part am fairly good at it.

I have noticed some stages in diabetes care. Early on I struggled to remember to check blood sugar before disciplining. Guess what? Most of the time they were acting poorly their BG was well out of range. The point of As Seen… was that that pendulum had swung past center and my reactions had become to check blood not to caress the child.

That diabetes driven change in me sucks and I am trying to fix it. This side of diabetes is something I don’t see much conversation on. Well other than at FFL.

For me the big take away from FFL was it is not just a numbers game. It’s a parenting game.

August 27, 2007

As Seen on TV - Not

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It is a parenting reflex action. Check for a fever. We gently put our hand on a child’s forehead when they showing signs of being ill.

It is universal. So much so, I see TV parents checking TV kids’ foreheads in ads as a touchstone that symbolizes loving care. On TV they probably are not real parent and child and everyone is feeling good about a paying job.

In real life the gentle touch is in and of itself soothing.

I was thinking about this the other night. My daughter was sleeping but not well. She was tossing and turning and barking with allergy driven, post nasal drip cough. So what did I do?

I jabbed a sharpened shard if steel into a small finger and squeeze out of a drop of life’s blood. Maybe I make a correction this time. Maybe I don’t. Maybe I need to wake her up for glucose. Maybe I don’t.

At times like this it seems like there isn’t sufficiently eloquent profanity to express what diabetes has done to me.

It has changed my reflexes from a gentle therapeutic caress to a quick “painless” poke.

“Painless” I have done it to myself. It ain’t “painless.” Even the most calloused fingers feel it, sometimes quite a lot.

Sure most of the time, at night she doesn’t wake up, sometimes she flinch but occasionally she is jolted awake. All the routine in the world doesn’t change my understanding that this is game of finger stick roulette. Even if most of the time is doesn’t, I may hurt her this time.

There in is the real issue for me a parent. No matter how often I have done it, lancing goes against my nature.

It is painful. Painful to do to sleeping child.


Diabetes sucks.


I don’t get this message in the diabet’US ads old Wilfrod does on TV. But it’s hiding silently, clearly played to, in the “almost pain free” alternate site meter ads.

It happens late at night, past Wilford’s bed time and well into infomercial time. The regular world doesn’t see it. They don’t understand that it is painful to a parent even if it isn’t to their child.

So the other night I started checking for fevers that I knew weren’t there. She was still asleep but in real life the gentle touch is in and of itself soothing if only for me.


A big part of why we check for a fever is it makes us feel better.


Maybe the biggest part.

August 25, 2007

An Inconvenient Diagnosis Part II

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The meter goes up to 600. Normal is 100. Delaney was HI. That means over 600. She had slight to moderate ketones. Later in the week we tested a glass of Coke. It was over 600 too. Beer was 35. Diet coke got an error.

So she was way sweeter than beer, (literally as well as figuratively.) She's also type 1 diabetic.

She wasn't too bad yet but if a few days would be.

At midnight I tried to call Children's Hospital diabetes hot line. It was Sunday late. Delaney wasn’t a patient and they couldn’t give me anyone. Well it was a long shot.

We didn’t sleep, well the kids did, the parents didn't. We moved Delaney into the king sized bed with us.

Here is what would happen if we went to the local hospital.

  • They would take a blood test.
  • It would be real high.
  • They would test for Ketones.
  • The test would be low to moderate.
  • They may give her an IV.
  • Delaney would be packed off to the local Children’s Hospital.
  • The local Children’s Hospital would stabilize her with insulin.
  • They would hold her hostage while they made us go to 3 days of diabetic parents classes.
  • The emergency room cost about $25,000.
  • The 3 days of Diabetes Hostage Classes is twice that.


Been there done that. Not a good time.

Orlando is famous for theme parks. Children’s Hospital of Philadelphia (CHOP) is one of the top ranked kid’s hospital in the US. I would rather play in Orlando and Hospital in Philly.

Well OK, I would be happy to skip the hospital totally. Sorry CHOP I really do love you guys but more as an out patient friend, I'm not interested in a moving in kind of relationship.

This can happen with insulin. We have plenty it with us. All we need is a Rx to say it is OK to use and how much of it to use. In the early morning Kim called our family doctor. I called CHOP and left a message. Both got our cell numbers on their respective answering machines.

We called friends back home and had them break into our house and Fed Ex more diabetes testing supplies. We didn’t pack for doubles. Delaney was still scoring big numbers, had slight ketones but was in fairly good spirits. There was only one thing to do.

Go to EPCOT.

We rode Test Track - It is Delaney's favorite.

Our family Dr. called back. Bummer, he was taking the line that we should go to the local hospital if we thought Delaney needed treatment. Expected but still the wrong answer.

We rode Ellen’s Energy Dream. I enjoyed it at the NY World’s Fair in ‘64 when it wasn’t called Ellen’s Dream. I like Small World then too, still do. I was about Delaney’s age at NY Worlds Fair. I was a space cadet on Ellen’s Energy Dream. Wonder why?

Shortly after we woke up from Ellen's Dream, I got a call from Tina, Connor’s diabetes nurse at CHOP. We have taken Connor to see her a bunch of times so she knows us and our level of diabetes management skills. We talk about the numbers, how Delaney was doing and what symptoms she had and didn't have.

She agreed Delaney was OK for a few days but was heading for the hospital by the end of the week if we didn’t do anything. I allowed as how I wanted to keep Delaney out of the hospital in Florida, not have an emergency flying back, and that ninety percent of the hospital stay is the whole hostage for diabetes education thing, written tests and all.

Tina thought that hostage line was funny. (A key part of humor is the truth in it.) I considered that a good sign. It is one of my classic Evil Emperor techniques, get’m laughing with you.

I also wanted to keep playing in the parks if possible. Even the best Children’s Hospital isn't tons of fun. Disney Parks are.

Tina agreed the goal was to keep Delaney out of the hospital. She would talk to Craig our endocrinology Doc and see if they could work out treatment by phone.

Have fun, relax, she’ll call back.

Tina you so ROCK! The call was a perfect 10 as far I could tell. Lets review on instant replay. Point 1 - have fun. Point 2 - Relax Point 3 the pros are on the case they will call back. That is a trifecta.

We went off to other EPCOT attractions. Sometime in this process we realized that we hadn’t given Connor any insulin in the morning. Swift, real swift, we need suck it up and pay attention we got two of these guys now.

Memo to us:
Gotta deal with both diabetics, not just worry about the new one.

We went back to the hotel and got Connor fixed up. I was climbing the walls waiting to hear back. So rather than break the walls, I walked down to the bakery and see if they could give me information about the carbs in the snacks the kids like.

The Bakery manager / head chef Mustafa was very cool. He would calculate the carb levels of anything the kids were interested in. Now there is some wonderful personal service, that will also sell more snacks. I had just started talking with him when Tina called back.

Tina and Craig mapped out a plan to treat Delaney by remote control. Outstanding!

Tina had dosing levels for Delaney. So there I was borrowing a pen and paper from the Bakery to take notes on how much insulin to give my diabetic kid, kind of ironic.

Tina said she would (and did) call back regularly and check in. She started calling later that afternoon before her shift was over and checked in every day. Cool. I told her I was taking notes on a napkin.

She laughed and asked if it was a cocktail napkin.

"Nope. Bakery!"

"Better!" She said. She told us to enjoy the vacation and to call if we had any questions.

I went upstairs to give gave Delaney her first shot. Within a half hour lethargic girl was gone. Delaney was literally dancing around the room and doing the worm on the floor.

Oh yeah, we remember this kid! I guess that having that much sugar in your blood and suddenly getting a little insulin so you can use it gives you a big boost. She was jazzed. There was only one thing to do.

Go to Disney Studio and play!

Tina checked in daily. We got Delaney's blood levels into control before we left Disney World. When we got home we took Delaney down to meet Tina and Craig at CHOP. They said Delaney was kind of a local ledged as nobody at CHOP had heard of a kid being diagnosed type 1 and brought into control without being admitted. We said they were our heroes for making that possible by working with us to keep her from needing to be admitted.

Delaney gave them both BadShoe.com pins.

CHOP is the best for a reason. It is the same reason Disney is at the top. It isn't the fancy flashy equipment - it is the people. People who go out of there way to provide the best service they possibly can.

People who put, "Have fun, relax." first.

Mental state count.

August 24, 2007

An Inconvenient Diagnosis

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This was written as a Disney World trip report for fellow Disney Fans. I have tried to translate it into English but a fair amount of Disney fan jargon remains. Sorry, It is offered up for the humor value. I hope that translates.
This happened in Dec '04



We had a great day in Disney’s MGM Studios. In the morning Connor and Kelley both added to the family's collection of Who Wants to be a Millionaire hats. This was back in the days of the theme park version of the TV Game show. We loved it. Putting two of us in the hot seat in one day wasn't unusual, we had game.  Kelley had been in the Hot Seat before but this was Connor's first time. We rode some rides, played around and had a good old time.

Kelley wanted to take the boat back to our Vacation Club resort. Kim and Connor walked. We could see them on the path Connor was bouncing up and down, waiving his arms around like a nut and generally having the time of his life. The hot seat does that to you the first time.
Then you want more…

Walking back to Boardwalk is WAY faster than the boat. But the boat has seats. We got off at the Swan and walked back from there. Our room was WAY DOWN THE HALL. Kim and Connor went in the back door up the stairs and were in the room way before us. The kids were tired, even Delaney who is typically a spinning top of doom in the afternoon. She actually chilled out and some a nap!

Kimball and I took the opportunity to go talk with Nancy at the concierge desk. We had priority seating at Whispering Canyon. The ZIA (Zurg Information Agency) was careful to make these PS on a day when our old pal Bobby would be working. Just in case we asked Nancy to call over to check to see if he was on. No point in going all the way over to the Wilderness Lodge unless the Varsity was playing.
Bobby is the very best. An all star. Disney World MVP.


Nancy confirmed not only that our boy Bobby was working at Whispering Canyon, she had made sure we would be at one of his tables. Now that is service. We gave Nancy a ThankShoe pin as reward. We also met Alfonso a front desk manager. We chatted pleasantly with him for a few minutes explaining BadShoe. Very nice guy, he didn’t even have us taken away in straight jackets.

Now we have had a few trips to Whispering Canyon. If you have been there you can see it is our kind of place; Quiet, Respectful, Understated – NOT!

Our friend Bobby wears a Tigger on his hat, so we wore matching obnoxious orange Tigger shirts as a tribute. We take BadShoe.com stickers and cover him with them. We make fools of ourselves and he plays right along.  ...or is it the other way around?

We check in and the wait is about 25 minutes. OK we can cope. After taking Delaney to the restroom I realize – We forgot the stickers!

Kim and I confer. The kids are chilling - Delaney was still a little groggy from her nap. I have time.

The BadShoe stickers are a tradition, I’ll ran back to BWV for them. I jumped into trusty Zurgmobile (the single most booked and re-booked rental in the history of automobiles) and took serious liberties with the posted speed ‘suggestions.’ Dashed down the hall and back, while my buddies at Bell Services kept the Zurgmobile ready to go and I flew back.

Some where along this little journey, I found a good radio station. Good is a word that here means real rock and roll (real old that is.) Once again I am considering the signs as suggestions for people who a) don’t know where they are going, b) need a map c) are reading it while driving d) all of the above. D, final answer.

Have I mentioned Connor is diabetic - insulin dependent? What happens in a Type I diabetic is they can’t get glucose (energy) into their cells because their pancreas doesn’t make insulin. The way you spot this in your kid is they get tired easy, drink a lot, pee a lot, and sugar makes’m lethargic not energetic.

Connor has it. To get insulin into him, we use a hypodermic needle just before he eats. So if we eat out I carry the needle with me until - just before he eats.

Now for a variety of reason I don’t put it in my pants pocket.
1) It is sharp, and if the little protector fell off it could be fairly painful in a region I would really prefer avoid pain.
2) The plunger thing could get pushed in and the insulin pushed out in a region I would rather not have looking like I just peed myself.

Also I would like to save the insulin for the diabetic. These are all good reason why I carry the needle on my ear, like a pencil.

Jimmy Hendrix came on the good radio station. I turned it up, way up.
Let’s review:
1. Loud Jimmy Hendrix.
2. Hypodermic needle on ear.
3. Rental car, near warp speed, approaching Magic Kingdom Toll Booth.

I pointed at the Vacation Club Members parking pass on the dash. Mr. My-Job-is-to-Collect-$5.oo-parking didn’t even look twice. I guess hypodermic needle on the ear, mini van speeding, Hendrix fans are a dime a dozen round here.




Walking in I still thought was a riot and found it so amusing I couldn’t even say 'Jimmy Hendrix' when relating the story to Kelley in the Wilderness Lodge lobby. She wasn't too impressed by my tale but thought my speech impediment was hysterical.

Can you trade teenagers in when they get to smart?

Delaney came back from yet another pit stop.

Kelley was still mocking me. Delaney enjoys mocking me as much as any of the kids (brats) but she was still a little mellow and eased up on me uncharacteristically early, must have be an early Christmas present. She sat on my lap.

Man this kid is skinny.

I like the Wilderness Lodge Lobby. It is big. It has cool theming. There are all kinds of loud noises coming from Whispering Canyon.

There was a regular revolving door of people taking pictures by the Christmas tree. We were sitting right next to it and found the parade of photographers amusing. Most have little clue how to use their cameras. From time to time, I volunteer to take the shot for families.

I do this a lot on vacations, so a whole family can be in the picture. There is a protocol to follow. First you take the picture from where they were going to, inevitably this is WAY to far away and the people look like ants. I take one there anyway because they want the whole lobby in their picture, even if you can’t see them in it and they are outside the flash’s effective range. Then I walk much closer, frame the picture so you can see them and still tell it is some place cool and ask, “How about one a little closer where we get a good look at your faces?” and burn off a shot real quick.

I am willing to bet cash money the pictures I take like that are the best picture of their whole vacation. I earned beer money in school as a wedding photographer.

A particularly brilliant author, over at Deb’s AllEarsNet.com in the Digital Photography section, suggest this tip sheet for photographers, Top 10 Tips for Great Pictures. They guy is brilliant (modest too), so is the tips article, go read both.

There is a marked increase in the din of noise coming from Whispering Canyon. Our buddy Bobby the Kid has spotted us and is yelling across the restaurant and lobby to say hi. I love the subtly of this guy.
Our pager thingy goes off and it is time to be seated. This is convenient as it is the direction of the bathrooms and Delaney needs to go again. What has this kid been drinking?

We are led to our table and arm ourselves for Bobby’s arrival. Everyone gets stickers ready and the kids cover him as he walks up. Bobby takes the microphone and introduces us to the rest of the restaurant. Then he makes formal introductions with us and his other tables. “Old tables, this is the new table, they are one of my favorite family but they will take pictures of your shoes. New table, old tables.”
I sometimes feel sorry for the people around us, we play this place WAY up. We clink our glasses for the newlyweds at the next table. The other wait staff catches on real quick that we are fair game and they all come over for a yell or two. We yell back.

We have certain rules of engagement. Number one is we always bus Bobby's tables when he isn’t looking. If necessary we swipe the bussing trays from other unsuspecting waiters. One bluffs that we should clean one of his tables and off we go. Duh! he think we are gonna be embarrassed or something? Bobby comes back yells at the other waiter for poaching his guests.

Bobby recruited us to help take the guy at the next table oceans of ice tea. Kind of like the ketchup gag only with mugs of ice tea. Seems he was ordering a lot of the stuff.
Another time bobby brought the guy a bucket with a huge tea bag in it. At one point Bobby was chasing the guy around when he turned and pick up Bobby effortlessly. I looked at the guy’s wife and asked if he was a firefighter, nobody else is that graceful and effortless carrying a waiter.


After they left we found the fireman's kid's Toy Story toy under their table. (When we bus a table, we bus a table) The manager made sure it found its way back to the kid. Least we could do for a fireman.
Delaney was drinking chocolate milk almost as fast as the fireman was chugging tea.
She needed a refill. Bobby brought a half a jug. Delaney was thrilled. Funny she didn’t get jazzed by the sugar, quite the opposite she didn’t even want dessert. (Hey look this stuff is 25 carbs a cup.)

We carried on for about two hours. It was a blast.



Bobby gave the boys his waiter’s apron and a few Whispering Canyon check presentation folder thingies. Delaney got a stack of brand new napkins. Back at the hotel Connor was doing Bobby imitations. I was planning the morning with the kids (Kelley would be in charge while Kim and I ride Seaways in Epcot.)




Delaney was still not feeling right and Kim finally put the pieces together.


· Thirsty all the time.
· Peeing a lot.
· Skinny.
· Lethargic, particularly after a lot of sugar.

She got out Connors backup blood glucose meter and tested Delaney’s glucose level.

Delaney was off the chart high – hyperglycemic with trace ketones.

That counted as an unexpected twist.

She wasn't too bad yet but if a few days would be.

Good thing I have two ears, I’ll need’m for needles - We have another diabetic kid.

Part II is HERE

August 23, 2007

Of Technology and Brilliance

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I wrote about a Doing moment at the CWD FFL conference in Of Independence and Angry Mobs when the wisdom of who the care team is hit me. Another Doing moment, at about the same moment, was about what is important.

We were talking about some wiz bang cool technology that could report BG anywhere in fairly real time, cell phone, email, bounce of the Comstar satellite, etc. One of the questions was: Who would use it?

At first there was general buzz of excitement over cool new toys (and the room wasn’t exclusively male) when finally one Dad said he didn’t think he would want it because it would be too much of an intrusion into his teens life.

Doing!
Now that is brilliant. As type 1 parents, our job is to be parents, to raise kids to lead their own life, to let go.

In another meeting a wonderful young lady from the United Arab Emirates commented about transitioning teens from a teen’s perspective. Trust was a big issue in her household. Sound familiar? (Nice to know we parents are parents world wide.) She spoke eloquently about how trust impacted her relationship with diabetes and her parents. She talked about her need to take responsibility and be trusted with that responsibility.

Well I have slowly come to the realization that the diabetes is really just a parenting catalyst.
From Webster’s
cat·a·lystPronunciation: 'ka-t&-l&st Function: noun
1 : a substance that enables a chemical reaction to proceed at a usually faster rate or under different conditions than otherwise possible
2 : an agent that provokes or speeds significant change or action

Diabetes is a condition that requires parents to teach and give our children significant independence and TRUST faster than would otherwise happen.
Now I like to think I am a smart guy but truth be told I have been bombarded with this message since the first day of our son’s hospitalization at diagnosis. I am confident I will need to keep hearing it and writing it for years because it runs contrary to every fiber of my protective parenting soul. So how smart am I after all?

August 21, 2007

Swimming in the Data Stream Looking for the UN.

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or Becoming a Commie Pinko
Type 1 isn’t all about the numbers. It is about kids living their lives. That said there are one hell of a lot of numbers. We gotta deal with the numbers, so we can love the kids as kids. Nobody need love the numbers.


There are a ton of little electronic machines that produce billions and billions of numbers (and about as many strips on the floor.) At times it seems we are floundering in a sea of data points (and strips on the floor.) Unfortunately each machine speaks its own language. What we need is the UN. United Numbers.

Brenard responded to my post ...and I would like a side order of Holy Grail while I am at it too
saying:
One of the key parts to this (and the thing I've been preaching about for a while) is a unified data standard for diabetes data. Something that all device makers (pumps, meters, CGMS) follow. That would make it possible to actually take data from several devices and combine it into a single package for graphing and analysis.
Doing!


Brenard is brilliant. Bernard for President. (The heck with that constitutional provision about natural born citizen as long as he doesn't change us to left side of the road driving.)


Everyone at FFL with any kind of a {in my best Monty Python imitation} ‘Machine that goes PING’ was touting some kind of undefined wireless connectivity to some tool that alerts someone, most likely the doctor, (who is way too busy with patients in the office to be taking PINGs from machines that go PING.) I call this the machine that listens to the machine that goes PING and tells someone else.
In one of these sessions we got to talking about the school setting. One guy said there were three, count'm THREE, pumpers in his daughter’s one classroom. Wow!

So the big idea of the focus group was this new undefined machine that listens to the machine that goes PING and tells someone else could alerts the nurse if one of the three kids in the class was trending south.

How techie cool would that be?


But wait! What if each kid is wearing a different pump and CGM?


Does the school have to buy three different machines that listens to the machine that goes PING and tells someone else? One that listens in each of the three different languages, that each of the different machines that all go PING speak?


Or do three different insurance companies have to pony up (fat chance.)

Sounds a wee bit inefficient to me. It is like every machine is it own nation.


Imagine if we could get all these different Nations United or at least talking. We need the UN!

If all the machines that go PING spoke the same language then one machine in the classroom could listen to any manufacturers’ device and call the school nurse.


Just think, all the manufacturers could all reduce the cost of R&D spent on the machine that listens to the Machine that goes PING if they didn’t each have to invent a new language in the process. Hey guys in expensive suits! Lower expenses means more profits and bigger bonuses for the guys in expensive suits or they could then invest that saved R&D money into better design, clearer user interfaces and compete on usability! Yeah I think it would go to bonuses too.


Anyway - Bernard for President of the UN!

I look at it like this, there are a standards for a USB port, bluetooth, driving on the right side of the road. Well OK there is the whole UK exception for the last one but you get my point ...well Bernard may not.


I know that some companies want to invent the wheel, patent it and keep others from rolling. Who gets hurt in this deal they say - we invent the spoked wheel, we should have exclusive rights to it.

I’ll tell ya who get hurt – kids - maybe two of the three kids in the classroom. It is the kids’ data transmitted through We the People’s spectrum. There is an interest here that takes precedence.
OK call me a communist - I want to see a Reaganesque rising tide that lifts all boats.


I did promise to write a number of medical companies a letter about this when I was bending their corporate ears at FFL.


Think they will like this?


Maybe I should write my congresswoman too. I think I'll skip the commie pinko part in her letter and maybe the Regan bit. She's a D.

August 19, 2007

Family ties key to youth happiness

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An AP / MTV poll comes to the conclusion that family ties are key to youth happiness.

How do you get diabetes out of the way and pay attention to your kids? My buddy Mark says: "BAM! Dee is wrecking your life, and will continue to do so until you stop listening to Dee and turn your attention back to your kids."

Hey Mark you were all over this before they were, did AP/ MTV survey you?

The survey says family time is top answer on the board. So what are you doing about it? I would love to hear some success stories.

(We go to Disney World among other things- LOL)

...and I would like a side order of Holy Grail while I am at it too

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One of my quests is for a diabetes management software application that is worth using. I would like the cure and the Holy Grail while I am at it too.


They seem just about as likely.


One look at the marketing materials and you kind of just know it isn’t going to work out. In Of Independence and Angry Mobs I wrote about the doctor centered mentality of diabetes equipment manufacturers. I think that mind set is one of the reasons we can’t find this Grail.

So what would this holy grail of software do?

It would help families adapt to varying diabetes by:
Tracking for reporting all the data users create in their daily diabetes care without creating a lot more sets of family tasks. We have diabetes – that has enough tasks as it is.

All the BG data, including CGM info. All the basal data. All the carbs entered into the pump to calculate all the bolus data. Any user defined flags on those carbs like pizza. User defined variables that could be things like heavy exercise, set pulled off, ketones, freaky weather, stress, menstrual cycle, weekday, weekend and what ever else people dream up. The key here is being user definable.

Then we need reporting ability and the ability to include or exclude data based on those use defined fields. Build reports that average the midnight to 6 am BD data from meters or CGM for nights following a day with hard exercise. There you have info for tailoring basals for a post activity dip in BG.

How about sorting the data for a school girl’s weekdays, excluding days with PE class to build a normal school day profile and one only for PE days?

Maybe we can make some sense out of Pizza.

The key is to get all that data into one application, WITH some user defined life style information, and then slice and dice to provide intelligent reports for decision making. The doctor doesn’t have the time to do it and we won’t either without some decent tools.

The reports need more than breakfast lunch dinner night time periods. I vote for 24 hourly time slots on the log report with numbers and a graph. But hey why not let the users pick what works for them? 4 may work for some folks 12 for other I want 24. It is software; variables are part of the deal.
Reports should be able to show more than one day’s data, show average days in a range or average user defined days. Toss in some standard deviations too.

Those of us who use a bolus calculation in a pump are putting in a ton of information. Things are moving in the direction of saving and using that data but from what I have seen that movement is in baby steps. Compared to the price of a pump memory chips are dirt cheap and small, load them into the pump. Make the pump talk with the CGM and all of it interface with a simple to use but user controllable desktop reporting engine.

If it was real cool it would let you save or track one data set and use it as a benchmark for another set of data to let the user test to see before and after adjustment. Maybe we can have a few ‘Wizards’ to help calculate ISF, I:C and a partridge in a pear tree.



Since we are talking about a a pipe dream here, all of this should be based on industry standard data structures so that patients (and their doctors) can choose any combination of meter, pump that suites individual needs. As opposed hampering patient freedom and health for proprietary gains.

Musings on NPH and the meaning of life.

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I sometimes think those of us who frequent the diabetes online world can scare people with heart felt and school of hard knocks experience.

I think at times we leave new people with the idea that they are doing something wrong by following their Doc's instructions and using NPH. That is a mistake (making people feel that way), I am sure nobody has that intent but I think I see it happen, so here are some non negative thoughts on NPH.

NPH worked well for us for the first 3/4 of a year or so for each of our kids.

I have come to see that was successful because the NPH was supplementing partially functioning beta cells that could make up the difference but not carry the load of insulin production.

So, I see it as a judgment call to go with more injections in a basal insulin (Lantus) and bolus program vs. initially fewer injections with a program using NPH. Most of us are in a newbie state of shock about giving shots at all, and are not really in the best place to make an informed choice about more vs less shots and insulin curves at diagnosis. I can't fault a Doc for an initial NPH program, particularly with a needle phobic parent, like I was.

Part of the art of medicine is the whole patient thing. It is appropriate and correct for the care givers to consider the stress of giving shots and the patient reaction to that.

I think it is important that as we become experienced, possibly opinionated, professional diabetes parents (PDP someone get me a copy right on that!) that we keep in mind where we came from. I had a hard time with shots at all at first. I would have had more stress with a Lantus program with a basal insulin for every thing the kid ate. Maybe just Lantus would have worked. I can’t say.

What is important is getting on insulin and learning to manage it. That is a life saving change. Once you have done that selecting different management tools like insulin, pumps, pens etc is about convenience and incrementally better results. Life saving vs. incrementally better.

There isn’t one person on any diabetes web board who wouldn't use NPH tomorrow if the world supply of Lantus and or pumps disappeared.

As PDP we need to keep in mind that holistic thing and that some of us (ME) were needle phobic (kind of funny to think that way now.) NPH may not be the cutting edge but it is a lifetime better than the no insulin at all of a hand full of decades ago.

I, for one, am perfectly content that using NPH was a good first step for us. I am also comfortable that moving to a pump was something we were ready for but it may not be right for everyone all the time. I hope there will be advances that provide us with other and for us better approaches in time.

August 15, 2007

Free Drinks have Carbs

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Ice Station Cool or what ever it is called in Epcot serves a bunch of strange sodas from around the world in tiny cups. Seeing as we write DisneyWithDiabetes.com, we get asked. "Hey how many carbs are those things?"

Didn’t have a clue we figured it was like any generic soda and guessed at it. So I wrote the good people at Coke and this is what they said:

"We show nine Coca-Cola products available at Epcot. Below are the carbohydrate information:

Product Carb amount (per 100ml 3.4 oz)

Beverly 15g

Kinley Lemon 13g

Krest Ginger Ale 9g

Fanta Kolita 14g

Lychee Mello 15g

Lift Apple 11g

Mezzo Mix 11g

Smart Watermelon 13g

Vegitabeta 10g

That Vegitabeta stuff is brutal! If you can slug back 10 carbs worth you are tougher than nails and the USMC is looking for you.

August 12, 2007

The year of million (and one) dreams.

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The year of million dreams is Disney's latest marketing program. It means Disney is doing “special” stuff. It is an attempt to institutionalized making Magic. They have official prizes and everything.

Well here at ThankShoe we know a little about Magic. Most is made by CMs who just step up and do something non institutional but we are glad making magic is back on the Mouse’s to do list.

Don’t get me wrong I think it is a cool program and would love to stay in the Castle over night but I was a little afraid this means they limit magic to the official program.

Nope.

One of the things about Type 1 diabetes, (and there’s a ton of them) is it sucks. To be specific at times it sucks the energy right out of the kids. Sometimes when their blood glucose (BG) fluctuates, they feel very weak. Heat, excitement and exercise all gang up and can make BG fluctuate even more.

Disney in July - heat, excitement and lots of walking, Delaney crashed big time in Animal Kingdom. She was spent, didn’t want to take another step. It was early - we had been there about an hour, just off the safari and there was a lot we still wanted to do but it was looking like I was taking her back to the hotel.

We took a rest. Mom asked around about a wheelchair, not walking in the heat would help. She was hoping we could get one the back of the park. Nope - gotta go up front. I headed towards the gate, they chilled and were going to go slow and meet me at the Big Tree.

I got a call about half way to getting up front where Disney rents wheelchairs, come back, they got a wheelchair. It seems the CM Mom asked about a chair took a little initiative and found a wheel chair at the first aid station. She gave it to Delaney.

This was spectacularly simple and exceedingly cool. In doing this she gave Delaney and us the ability to enjoy the day and even screw up some serious courage. You see Delaney is much of a roller coaster kind of a girl. She had been thinking of doing Everest since before it opened but well it is a bit scary. (Think her pondering Everest added to her excitement level and messed with her BG?)

Well after some rest the wheelchair provided, Delaney decided to try Everest. She was shaken but not deterred. For more on roller coasters and diabetes click here.

So a big ThankShoe to Wendy Andrew, Disney’s Animal Kingdom Horticulture, that right a plant person, not first aid, not magic memories, one of the army that keeps AK so green and lush (and humid lol). It wasn’t scripted or institutionalized but Wendy Made Magic.

Roller Coasters and BG Control (Who says science isn’t fun!)

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Special thanks to Dr Peter Wiesli MD, diabetologist and as it happens Disney fan.

He said in an email, “As a diabetologist, I always wondered what happens with glucose control during the rides.” Me, I wonder if I am going to toss lunch.

The good doctor and his doctor pals did a study on stress and glucose control. In point of fact, his team’s article in Diabetes Care, June 2007, that caught my attention, was titled, “Maintenance of Glucose Control in Patients With Type 1 Diabetes During Acute Mental Stress by Riding High-Speed Roller coaster's”

Yes the report sound a little officially academic but hey read between the lines, it says, “We wrote a paper as an excuse to take a bunch of T1s out and ride roller coasters!” Damn I should have stuck with the periodic tables after all. I say he should be allowed to deduct his park tickets as a business expense, but then if it was up to me we all could.

So what did the good doctor find? “That severe short-lived mental stress, as documented by markedly increased heart rate and blood pressure and salivary cortisol, barely affected glucose control in patients with type 1 diabetes.” (I had to look up cortisol at Wikipedia, it is a stress hormone)

He was kind enough to translate that into diabetic parent speak for me as follows; “The effect of the rides on glucose concentrations is surprisingly low; although heart rate and stress hormones were markedly increased by the rides.

“I would recommend first, and most important: Have fun. Second, to be sure, let your kids make an additional measurement between the main meals.”

So there you have it: Official science! Diabetes need not be a reason to keep your T1 kids off rides.

Have fun. Test more. In that order.

Keep in mind you should start the ride in control, follow your pump manufacturer’s instructions about your pump and rides. While it has nothing to do with diabetes it has everything to do with parenting, never force a child onto a ride that terrifies them.

YDMV (Your Diabetes May Vary).
Now how do I get into the study control group so I can write off a day in the parks?
http://care.diabetesjournals.org/cgi/content/extract/30/6/1599

So you forgot a bolus...

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... been there, forgot that.

Congratulations! Your diabetes has moved to second place or even lower in your life. I think forgetting a bolus or blood check or some other D thing is a healthy sign every now and again. It means diabetes is not the single most important thing in your life. Than means you may actually have a life! As long as it is an occasional laps I say it is great.

Don't kick yourself. A few hours out of range is nothing in your next A1C compared to beating yourself up. Getting down on yourself, now that has long term implications.

Maybe you forgot because the toddler was acting up. I gotta wonder if the toddler isn't saying, "Hey I need some attention here too!" Not that they know they are saying it.

One of diabetes insidious little things it sucks up so much attention we can forget to spread time around with the other kids. Diabetes is a bastard like that.

August 8, 2007

Amy Tenderich writes brilliantly on her blog DiabetesMine.com.

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That is a complete sentence, maybe a paragraph, possibly a whole post.

It was going to say she writes brilliantly in her open letter to Steve Jobs about the design of diabetes stuff . She does that too.

Anyway I had sent a letter to a pump company CEO with much the same idea but about the design of the way the pump operates.

So this is more or less what I wrote:

July 16, 2006

iPod!
Your pump user interface is a bit cumbersome. Scrolling is at time strange and the whole thing needs an infusion of customization and simplification for users. Give the designers an iPod, now there is and easy to use and customizable interface.

The food database is a great idea but we hardly ever use it. It is too much of a pain.

Do you eat a lot of Baby Foods? How about Beans? There they are the 2nd and 3rd groups of food items listed on the first screen. Two of the first six, 33% of the best screen real estate. You know what they say the three most important things about real estate are, Location, Location, Location.

Think of the food groups like play lists on an iPod. Users should have that degree of customization of what food is in a food group and what to call the group. We should be able to put any food in any group, call the group what works for our lifestyles and have as many for few as we need to manage our diabetes. One size doesn’t fit all and one set of food groups doesn’t either, your diabetes may vary.

On the subject of that food database, top food items work great in the pump. How about cutting a deal with the supplier to get the PDA application for pump customers so we have the rest of the food items handy too?

I am with ya Amy! I just made the mistake of writing the pump gut not the Apple guy.

August 7, 2007

Bunnies, Chinchillas and Hamsters Oh My!

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Very good friends hired our boys, 13 and 14, to take care of their miscellaneous rodent based pets, while they were on vacation. We are talking hamsters, bunnies, chinchillas etc.

A day or two goes smoothly with the boys when the younger of the boys (the diabetic) discovers “Nibbles” has made a break for it. Apparently Nibbles escaped via a poor connection between the cage and a climbing tube in the hamster habitat.

Nibbles is the pet of our younger daughters bestest - friend - in - the - whole - wide - world. I have been fending off “I want a hamster too,” request since, the apparently very cute, Nibbles first showed up. How you can tell a hamster is cute? I don’t know. They all look fairly rodent like to me. I am sure would look and taste rodent like so to our dogs; dumber and dumbest.

No hamsters in my house!

However, in deference to Delaney’s feelings about the cute rat like creature we kept the word of the escape on the QT. After a night of looking and Googling 'how to catch a wayward hamster' on the internet (put food in a bucket and build stairs out of books. The hamster climbs the books and gets trapped in the bucket with the food.) We came to the realization it was time to call and report the escape.

Our friends took it well and their brain trust suggested that missing hamsters are most active between 6 and 8 pm. (Apparently the hamsters make a break for it in their household on a semi regular basis.) So we sent out another search party to check the buckets and listen for the little scurry of furry feet.

Shortly after the boys left I got a very excited call, “Dad we found Nibbles. She is stuck in a wall. We can hear her but can’t get her out. We need help.”

So with visions of taking a dry wall saw to our friends' beautiful house, I headed over. Sure enough we could hear and eventually see Nibbles. She had fallen down an open stud bay between two walls and was trapped 5 feet down. We tossed down a small piece of apple figuring it would keep her around, aka keep her from dying of starvation, while we worked out a rescue plan.

It turned out to be plans.

I suggested using a shop vac tube for her to climb out. That didn’t work.

We only briefly considered a huge wad of duck tape on a stick. Right up to: How do we get it off the tape if it works?

The older boy found a butterfly net. It was too short but a better idea. With an extension handle and piece of apple in the net it was looking positive. The net bunched up in the wall and so it didn’t extract the rodent. The rat like creature reached in and grabbed the food but skipped the ride up in the net. Bait and a means of catching the hamster it seemed was the way to go. I was beginning to wonder how much one of these little thing eats.

Mom found a small square plastic jug that had previously held construction staples. She suggested it be fit with two strings. One string tied at the bottom to allow it to be lowered on its side and one at the top to pull it upright and up. Into this went hamster snacks. With this and some patience, not a 13 year old by’s strong suit, Nibbles was extracted, thirsty but other wise OK.

So what does this have to do with diabetes? Nothing and in that nothingness, everything. While Nibbles was AWOL Connor was more worried about it than anything else, yeah he checked his blood and did his stuff but he was worried about a hamster, his charge, pet to his little sister’s friend and a key part of some disposable income. What that tell you?

He is a normal kid. When the chips were down he and his brother worked well as a team. Nice to be reminded that every now and again.

The diabetic kids isn’t an ongoing string of BG number, only as good as the most recent A1c. The non diabetic is a key part of the team.

It is important to see our kids as kids first and foremost. Sometimes hamster can help you see that.

August 3, 2007

Get Zen with YDMV

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I read a comment from a recently diagnosed family that was concerned about the fluctuation in BG numbers. We have all been there.

To this let me say, and I mean this most sincerely, get Zen with YDMV

YDMV = Your Diabetes May Vary.

BG is one, of many, things in your diabetes life that is going to bounce around. Sometimes you will understand why, sometimes you won’t. If you can get used to that you will be fine. (and if you can get used to that you are way better than me ‘cause two kids and five years and I still struggle with the idea.)

YDMV is built into our care programs but we don’t always see it. I bet that in classes the terrible week of diagnosis you, like I, were told something like the goal is for BG to be in range 80% of the time. Than means everyone knows up front the plan up recognizes you will be out 20% of the time and doing great. That's a goal that would be tough at the outset to make.

OK if you’re a re like me what you probably heard was people who love there kids less than I love my kid are out of range 1 out of 5 tests but I’m super dad and I can do better!

OK Raise you hand if that was you too.

So here is my two cents. Try to relax; kids can smell The Fear* on you better than a dog. As the great philosopher Baloo the Bear says is the Jungle Book:

If you act like that bee acts, uh uh
You're working too hard

And don't spend your time lookin' around
For something you want that can't be found
When you find out you can live without it
And go along not thinkin' about it
I'll tell you something true

The bare necessities of life will come to you


No I am not saying don’t test BG. I am saying, if you can chill on the numbers, they chill too and that makes what ever the number is a better number.

The number isn't a measure of your love or devotion or care or effort or even parental skill. You want a number for that? Track how much time you spend reading a book out loud, playing games, watching Baloo and his pals on DVD and exploring the random ideas they have about life.

BG is just a number. Like the interstate or other highway number all it tells you is the course are on right then and there.

Should you be on I95 north or I295 south? That depends on where you're going and where your coming from. Sometimes you want I95, in fact most of the time you are driving to Florida from Philly it is a good number. Sometime you want to get around local congestion and you take 295.

Sometime 95 is the perfect BG but after a meal or in our case heading into sports a bigger number is much better. All depends on where you are going and where you have been but more importantly, where did I put the Jungle Book DVD?

* for more on The Fear see: Hunter S Thompson, Fear and Loathing in Las Vegas

An uninvited guest

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We have this acquaintance Dee, an uninvited guest.

Dee is not real good about season changes. He gets all flustered and makes people around him nuts. Connor was the victim this time. Dee gave Connor a bad, big headache.

At the start Connor’s blood was OK. But Dee was being his usual pain and aspirin and ice packs don’t help the head and Connor’s BG shot over 400. Enough is enough Connor headed to bed needled by Dee.

About an hour and a half later I turned in and checked Connor on the way. Low.

I gave Connor about 20 uncovered carbs as I fingered a drop in excess of 380 pints in 80 minutes needed a little more in the way of breaks to stop it. No rest for the weary I settled into some late night TV intent on a re-test. Twenty minutes later he was still just low. So a little more juice and turned the basal rate down 50 % for an hour.

Meanwhile Delaney was some how 250.

Nobody invited Dee, the guest who will not leave, what a pain.

When in the Course of human events...

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...it becomes necessary for one people to dissolve the bands which have connected them with another and to assume among the powers of the world wide web, the separate and equal station to which the Laws of Nature and the net's god (Bell Gates and / or Al Gore - one of them invented it right?) entitle them, a decent respect to the opinions of webkind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all diabetics families are created equally screwed up, that they are endowed by their diabetes with certain unalienable Rights, that among these are venting about Life, Liberty and the pursuit of Insulin. That to secure these rights, web blogs are instituted among Women and Men, deriving their just powers from the consent of the diabetic posters. That whenever dealing with overly “helpful” non diabetic becomes restrictive to these ends, it is the Right of the People to institute a new blog, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.

What works for you may work for me but what works for me may not work for you.

It is natural that we have brand loyalty that doesn't make other brands bad.

Following your doctors advice is probably a good idea, even if she recommends treatment that isn't popular on-line.

Kit is my Hero!

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"You can’t fool a diabetic… we know what pricks look like!" - Kit

Love ya Kit.