March 26, 2008

Anything but Another Shot!

In some cases shots get good press, as in the saying, "like a shot in the arm" used in the context of one shot and you are all better. Probably said by people that don't get a lot of shots.

I am sacred of needles. I don't like shots. Never did. That was a problem years ago when my son was diagnosed with Type 1. I got over it. Real fast.

So I can see why there is a lot of talk about non shot delivery systems for insulin. Now my bet is the driving force is really getting insulin into type 2s because there are more of them. I bet a lot are like me needle phobic. I get the feeling that there is more of an attitude of shots as optional in that segment of the diabetes market. So an alternative delivery for insulin could serve a big market with large public health value.

So here is some news on the non shot insulin delivery front.

Let's call'm the patch, the breath spray and another bong. Yeah I know that is a misrepresentation of solemn work on alternative delivery systems to benefit those who need some means other than a needle bla bla bla..

Patches, breath spay and bongs is more fun to write, probably to read too. Serious and Solemn aren't the same thing even when writing about the news.
The Patch
LONDON (Thomson Financial) - Australian biotechnology company Phosphagenics Ltd said it has received ethics approval for a Phase 2 clinical trial of its patented transdermal insulin delivery system, TPM/Insulin on patients with Type 1 diabetes, with the trials due to start in April.

The Spritzer
(and with some mint flavoring it could freshens your breath too!)
WORCESTER, Mass., March 25, 2008 (PRIME NEWSWIRE) -- Generex Biotechnology Corporation (Nasdaq:GNBT), the leader in drug delivery for metabolic diseases through the inner lining of the mouth, announced today that it has received a Purchase Order for 210,000 canisters ofGenerex Oral-lyn(tm), the Company's proprietary oral insulin spray product, from Shreya Life Sciences Pvt. Ltd. (, the Company's distributor in India. This is the first Indian commercial order for the Company's flagship product. Generex Oral-lyn was approved for sale in India in late 2007 and is the first non-injectable buccal insulin to receive Indian approval. Generex Oral-lyn is delivered into the mouth via the Company's proprietary RapidMist(tm) device. Unlike inhaled insulin products, buccally absorbed Generex Oral-lyn does not enter the lungs.
I had to Wiki buccal; the adjective form of cheek. Wiki is great.

More Bongs
MannKind is still working on inhaled insulin. They have the market all to themselves and they don't want to be compared to the other brands, they're practically cranky about it. Who can blame them? The call Seeking transcript get interesting around page 5.
The only insulin formulation that does address cranial level separately from fasting modes is Technosphere Insulin. No other insulin even comes close. Good control cannot be achieved through cranial kinetics that is at least those achieved as good as Technosphere Insulin is. So please don’t compare Technosphere Insulin to Exubera.
Exubera was simply a relatively inconvenient means to deliver insulin with no clinical advantage, and at higher costs and with questions about safety. And don’t even compare Technosphere Insulin to any other inhalable insulin. The Lilly Alkermes product has a tail long after a cranial glucose challenge. They assert that the long tail helps to address basal requirements. As I have said earlier good control requires independence so their approach is unlikely to offer any clinical advantage.

I think there is more than simple needle phobia required to make any of these a contender. Simply put the needle isn't the only pain about insulin.

Getting the right amount, in a reliable way, with a known absorption profile is the real pain. I am not so sure that wall street market analysts get that. OK I am sure they don't get that even if MannKind tried to talk about it.
Importantly, Technosphere Insulin has the potential to prove really valuable in treating type 1 and the entire spectrum of type 2 diabetes, even pre-diabetes. Our target markets include type 2 patients who are currently using conventional therapies other than insulin, even including those currently using diet and exercise therapies but who are having difficulty achieving proper blood glucose control.

Read any T1 forum like CWD, Type1Parents or ADA. You don't hear a lot of griping about needles. But they sure can get fired up about what a pain in the arse NPH is.

You also hear a fair amount of concern about long term consequences. Now the long term is something Wall Street has NO CLUE about. They live even more glued to quarter to quarter numbers than someone obsessed with their A1C check ups.

We manage A1C for the long term. So we think about the long term consequences of therapy. We get smoking has long term lung problems and worry about inhaled insulin delivery.

To their credit MannKind is all about how they don't see it hurting lungs.

We previously announced the clean results of a two-year lab study and now a six-month study with no evidence of microscopic tumors. These and other extensive laboratory and animal studies have demonstrated that FTKP and Technosphere Insulin do not and I repeat do not affect lung tissue. We have seen none of the effects, even any that are minor, that have been seen with some pulmonary insulin.
(Page 6)
I think the average parent is going to require more than two years before the put something in their kids lungs. Now a needle phobic type 2 may be a more attractive market.

I got Tagged.

Here in, Pennsylvania, the hunting center of the know universe, tagged means shot. As in strapped to the hood of the car and being driven to the taxidermist.

Kerri at SixUntilMe tagged me. I thought she was a real nice person reading her blog. That was before I talked to her on the phone, then she tags me. Well five us in one shot. That is impressive even by PA standards. Apparently, I must have said something wrong, I’m tagged now.

I have to write a SIX word biography. OK I have lots of friends, like Nick, who will happily point out that is about five more than is needed after clown, and that is fair enough but those same friends and acquaintances know, I can’t say anything that briefly. Wait that was six words – we have a contender!

Hey Six words - SixUntilMe - is somebody trying to extend the brand here?

Ok here goes:

Serious isn’t solemn. Funny works better.

That’s not as funny as Carey’s

And that just pisses me off.

Crap how do you stop this?

Lighten up, Your Diabetes May Vary

Don’t wear Bad Shoes at Disney.

See? I can’t say anything briefly!

I can’t stop! Tag me now.

Said something wrong, I’m tagged now.

I need to tag other blogs.

Nick writes three, diabetes360, RateYourEndo, MathDummy

My Doc didn't make RateYourEndo

Nick, for revenge, write six words.

That enough from me, for now

Here's the rules:
Write your own six word memoir;
Post it on your blog and include a visual illustration if you’d like;
Link to the person that tagged you in your post, and to the original post if possible so we can track it as it travels across the blogosphere;
Tag at least five (or one if your lazy like me) more blogs with links; and
Don’t forget to leave a comment on the tagged blogs with an invitation to play!

March 25, 2008

Listen up Newbie!

(In my best drill Sgt bark.)

Listen up Newbie!

This is NOT your fault!

You are not a rotten person!

Diabetes is a vicious enemy and it will resort to psychological operations. Making you think you did something to cause this is one of it's head games!

Read the service manual on psy-ops and DO NOT let the bastard get into your head.

ARE YOU LISTENING TO ME RECRUIT! (Virtual spit flying from my lip)

Repete after me sugar breath, "Diabetes is a disease. Not a character flaw!"



Lows happen! In time they need to happen and you or your kid needs to learn to feel them.

You are now a HUGE target market for drug companies. That doesn't mean insulin and test strips are bad things. Your brothers and sisters in arms in the diabetes online community can help you sort out what good and what's bad. Talk to your buddies. Then talk with your Dr..

Now drop and calibrate the meter to 20!

Drill Sgt. BadShoe

(Laughing is a good thing too and that the bigger point here)

More YDMV Newbie Tips: 

March 24, 2008

Tune Up II: Management

Good management is about building on the things that bring success. It is not just beating the up on the low points. Those of you who work for a manager know what I am talking about. It's true for diabetes care as well as work.

Tiger wood has a swing coach. What do ya think, the guy focus on the things that keep that swing the best in the world or he beats up Tiger for mistakes?

What is important for a diabetic? No matter how good you are you can use some coaching and focus on what works.

The boy had an outstanding quarterly check up and is managing the care diabetes himself. Ok he isn’t doing the logistics, so far, but the numbers were good. So what were the best practices that got to that check up? Well first he's a good kid and while I would love to take all of the credit for that he's old enough that he is making his own choices about how he acts. I just hope to remain supportive of the good choices he is making.

Memo to Me
Be supportive of Good Choices
A) See Good Choices
B) Comment on Good choices

One thing we can take credit for was going to Friends for Life. Well OK to be honest we can't even do that, I kind of put off the idea when I first heard about it.

In my defense I know both Ds; Disney and Diabetes. My thinking was why would I waste a trip to Disney to talk about diabetes? We diagnosed the younger daughter the first day of a vacation there. Disney is fun and diabetes isn't.

Anyway the point that I am wandering about is we took them to Friends for Life last summer. That was a good choice. The credit for going should go to very funny guy named Willie talked us into it at a JDRF function.

Connor wasn’t into the whole idea of a Diabetes trip having had a less than stellar camp experience the previous summer. OK. He didn’t have a great time but he was elected camper of the year. The counselors elected him because he was avoiding some of his fellow campers who only talked about drugs and alcohol and so spent his time hanging out with the counselors. He is funny and they liked that.

So our judgment on summer diabetes events was not exactly outstanding in his mind. Fair enough.

Turns out he liked Friends for Life. He got along with the other kids well and with some good coaching by some of the presenters there some ideas clicked and he took charge.

So the first good management key is to build on the success he had at Friends for Life. Step one, honor the request he made and entrust him with his care and give him some rope to hang himself. That trust has gone a long way.

Good management practice two, go back to Friends for Life and see if we doesn’t pick up on more good management practices. Yeah we, as in we the parents. We picked up on a lot of good tips for with teens with diabetes there.

Trusting them was a big thing we learned. His success was in large part a function of us buying into a number of messages about trusting your teens. Some were part of formal presentations and others were conversations with other participants. A notable message was from a young lady form half way around the world. Apparently fathers have trust issues with their diabetic teens in other cultures too. She spoke about how important trust was and with some prompting talked about what that trust looks like. In large part it is to not micro manage and to accept variation as part of the program.


March 23, 2008

Newbie Advice IV: Never Buy a Meter

As a type 1 family your are going to use a ton of strips. Used strips will be everywhere in your house. You will use so many strips that the meter companies will be happy to give you meters.

Never pay actual cash money for a blood glucose meter.

OK the ketone meter may set you back a few dollars, but the big pharmacies have sales and you can get one for like ten bucks. They are worth it.

There is typically a thread at CWD that know where free meters are:

From the News Wire: Vitamin D

This is the kind of story that makes me nervous. There may be some science value here, so it is worth reading and learning about.

On the other hand it is likely to be yet another guilt trip for those parents who are stressing that their actions caused their child's type 1. More likely it becomes a source of poorly informed comments to T1 parents, as in fodder for the food police.

So for what it is worth:

FRIDAY, March 21 (HealthDay News) -- Children who take vitamin D supplements may be less likely to develop type 1 diabetes later in life, according to researchers who analyzed the findings of five previously published studies.

March 22, 2008

Tune Up

Diabetes is like owning a car, regularly scheduled maintenance, only the diabetes requires more frequent tune ups. I would hate taking the car in every 3 months. I gotta admit I don’t love taking the kids in either.

We went in for the quarterly tune up this week, the kids not the car. With two type 1 kids we figured out long ago it was key was to get them both scheduled the same day. Apparently stressed out minds think a like, we were the first of four families bringing in doubles that day. We asked our diabetes team if they had any triples, well there was one family with two kids and a mom who were all T1 but mom wasn't a patent.

This was our third quarterly A1C & tune up since the boy decided that he would take full control of his diabetes care. This started when he mentioned in passing at Children with Diabetes Friends for Life last summer, “Dad I am supposed to tell you I want to do all my own diabetes care for three months.”


That was one of three sentences we heard all week. Not that that was a bad thing, he was having a lot of fun with his peers and we didn't see him. Let see… the other sentence were, "We had a good session this morning." and "Cool I won an iPod."

It’s been his deal since then, the diabetes care, not the iPod. It was a shuffle he already had a 20gig color iPod.

He had been expressing concern that the A1C number may be high for a few weeks. No specifics just worry that it may be up.

Nope. His best A1C yet.

That was outstanding considering he grew again. I have to give him props. I thought I was the king of estimating carbs but he just took the crown. I don’t think I have ever seen him measure anything and being a growing teenager he eats all the time. (Eating off a schedule is what the pump is for.)

So we talked with the nurse about the importance of feeling lows and not having unexpected lows, testing before bed and when he gets up. It's hard to have a "you need to be on top of this," conversation when he clearly is.

Somewhere in here I realize that I had been pre-positioned to expect to need to have the "you need to be on top of this" conversations and was unprepared for the good number. The boy has become a politician, he had been managing expectations. I had been played like a fiddle. Brat! Wonder where he picked that up? (Comments about apples falling from trees are not welcome.)

March 21, 2008

Food TV's Easter Candy Trifecta

You have heard of a Turducken right?

Delaney and I were watching Food TV. We watch a lot, big fans. Anyway they had on a segment about Easter candy. They came up with the Easter candy version of Turducken; jelly beans stuffed into a Peep, packed inside a hollow chocolate bunny.

Now that was funny.

Wonder how many carbs that is?

Team Type 1 Story in New York Times

Team Type 1 the now proc cycling team is writen up in the NY Times. Check it out.

March 20, 2008


My reputation was dinged, on line, in a forum.

C’est la vie.

It seems I was a little too candid in a reply about what I put in my diabetic kids’ Easter baskets. I said, “Jelly beans, chocolate, malted milk eggs, etc.. and bolus.”

Apparently that wasn’t the correct answer. Opps too bad. That what I am doing anyway.

Candy didn’t cause our kids to be type 1. It isn’t going away because they are. I needed to learn this but it is a lesson I learned early. I didn’t know much about diabetes; OK I didn’t know jack squat about diabetes before Connor was diagnosed.

I know a lot more now than I did then. This is a lesson was learned before he was released from Children’s Hospital of Philadelphia - Kids with diabetes are kids and entitled to the joys of being a kid.

Candy on holidays is part of being a kid. Candy based holidays are important and among the many things CHOP taught ua are these two: He is trick or treating. He is eating his candy (as part of his scheduled carb intake.) They released him on the morning of Halloween with solemn instructions to trick or treat that night.

Be a kid.

Trick or treat, chocolate bunnies, candy canes and sometimes even stopping for donuts on the way home from church, even though it is a four mile detour the wrong way. They part of life.

I’ll happily take my dings.

OmniPod and Reading Tea Leave in the Financial Press.

Insulet Corporation’s Q4 07 Earnings Report Call Transcript is on line. Thanks to you can go read it yourself.

For those of you interested in ten pages of Q&A between the company and Wall Street analysts go have a read. Normal people well… if you having issues getting to sleep…

So what was interesting?

They talked about partnering agreements with CGM both Dex and Abbott. Pod is apparently looking to integrate the CGM. They aren’t clear about how that will work. I have to assume it is in the PDA portion not the pod. I can’t see how the stuff another inserter into the pod but they weren’t telling. It was sufficiently important to make CEO Duane M. DeSisto’s introductory comments.

While we always knew OmniPod would emerge as a platform technology other leaders in the diabetes space are recognizing this too. In January we signed a joint development agreement with DexCom to integrate their continuous glucose monitoring technology into the OmniPod personal diabetes manager. We have a similar development agreement with Abbott Diabetes Care to integrate their continuous glucose monitoring system, the Navigator which was just approved by the FDA last week. An OmniPod PDM with either Abbott or DexCom’s technology will combine the proven benefits of insulin pump therapy and continuous glucose monitoring in a single safe, discreet and easy to use system.

Using the Omni Pod to care to deliver medications other than insulin:

Bruce Cranna – Leerink Swann & Company

.. I think you said something about in 2008 a non-insulin product or initiative…

Duane M. DeSisto
Well, since we do not have one finalized we are well down the road with a couple of potential activities here. Both pharma products outside the diabetes space and I guess the best way to put it was we’d be disappointed if one of these didn’t turn into an agreement. So, we have two that we’ve gone through stability testing, flow accuracy testing and we’re well down the way. It is our belief that this is in fact the platform technology and more than us talking about it hopefully we’ll have an agreement in place in 2008 to prove it.


There was a lot of talk about monthly pod production numbers and the people and selling effort needed to get those numbers up. More reps hired and trained.

Manufacturing in China

They have invested in production capacity in China and are bringing that on line. There is a fair amount of give and take on this with the company and Wall Street, the Street wanting to know if and when all production will be in China. It was mostly financial talk but there was an interesting bit from the CEO on the difference between making them here and there if equipment breaks.

Phil Legendy – Thomas Weisel Partners
This is the equipment that lets you produce the finished product in China, is that right?

Duane M. DeSisto
Right. What we’re looking for is complete and total product coming out of Asia.

Phil Legendy – Thomas Weisel Partners
How many quarters of good product would you wait to see until you said, “Okay, this is working.”?

Duane M. DeSisto
Our view is pretty much – it really is for us we think it is going to be about a fourth quarter event that we’ll have enough experience that we’ll really know. Because, the trick when you do something offshore like this isn’t the fact that the product works, the question is how quickly can you react when something breaks, one of the pieces of the equipment, is the capability on the ground in a place like Asia to be able to respond immediately and get it back up and working. So, when everything works right it is easy to shake your head and say, “That’s terrific.” The real question is, and like I said the Bedford facility is pretty easy, the engineer is on the second floor, the equipment is on the first floor, they walk down a set of steps. So, what we really want to do is understand that whole interrelationship with the people at Flex once Asia is up and working.

March 18, 2008

From the News Wire: FDA OKs Novolog for Kid's pumps

Well it is news to me, that this is news. I just fugured people have been using it all along.

FDA Approves NovoLog(R) for Use in Insulin Pumps by Children and Adolescents

March 18, 2008

Novo Nordisk (NYSE: NVO) today announced that the U.S. Food and Drug Administration has approved NovoLog® (insulin aspart [rDNA origin] injection) for continuous subcutaneous insulin infusion (CSII) by external insulin pump in pediatric patients between the ages of 4 and 18 years. NovoLog® is the first and only insulin analog approved for this use.


DiObex and Camurus Sign License Agreement for the Development of DIO-901 in FluidCrystal(R) Extended Release Technology

Say what? - DIO-901(very low dose glucagon)

SAN FRANCISCO and LUND, Sweden, March 18 /PRNewswire/ -- DiObex and Camurus announced today that they have signed a license agreement to develop DIO-901(very low dose glucagon) in the Camurus drug delivery technology, FluidCrystal(R). The development candidate is an extended release formulation of low dose glucagon for the prevention of insulin-induced hypoglycemia in patients with diabetes.

March 15, 2008

From The News Wire: Newsweek on Faustman

Newsweek has an interesting article of Faiustman

Newbie Advice: The Long Run

Welcome to Type 1. I wish you weren’t here too.

For that matter I wish I wasn’t here. Twice.

Your child has diabetes. That sucks. Lets talk about you. Your life has changed. You’re feeling confused, tired overwhelmed and more. That’s about normal. You are trying not to let your child see all of that just like they are trying to let you see that same feeling in them.

You are going to be OK and if you can be OK so can your kid. You will be OK because you want your child to be OK and for them to be OK you have to be. - Try singing that to the tune of the Lion King’s Circle of Life. It doesn’t fit but you’ll get the idea anyway.

Diabetes care is doable. You can and will do fine. In a few months will be writing to reassure other newbies. Again the circle of life thing.

Right now you are overwhelmed by all the day to day, meal to meal stuff and unless you are a total freak, freaked out about all the holes you’re putting into your child. So let’s talk about long term because your not thinking about it now.

In the long term you want the kid out of the house after college. Am I right? Hasn’t that been the plan all along? Diabetes doesn’t change that plan.

You are now adding to the plan that the kid is self sufficient in their diabetes care when they move out. That is fair but it takes some long term strategic planning now.

As much as is possible without actually forcing the issue you need to encourage independent care of the diabetes; self testing, self administering insulin, self correcting etc. You need to help teach them that stuff.

WAIT A SECOND you say. I DON”T KNOW HOW TO DO IT, TO TEACH IT. Fair enough. As you learn teach them.

Don’t let diabetes care fall only on mom’s shoulders dad needs to step up and you both need to challenge, reward and celebrate steps to self sufficiency. If you can move a lot of the diabetes care to the young teen before they start rebelling then they may not rebel against diabetes as a surrogate for you.

Blood Sugar readings are not good or bad.
  • Your child isn’t good or bad because of a number on a meter.
  • A calm response is always good, maybe ‘why do you think you got that number’ is the best response to any number.
    You’re 98, why do you think you’re 98?
    You’re 52, lets get a juice, why do you think your 52?
    Your 487, why do you think your 487?
  • You don’t need to look over their shoulder when they test. It makes teens feel untrusted. If you need to see the reading,  you can always read the meter memory later.
I try to listen to a lot of other T1 teens with so I have a chance at  knowing how to deal with mine. TRUST is the issue I hear most and blood test are a huge part of that trust. Work on giving trust to them - they may slip up, Your Diabetes May Vary.

I know this may not feel like the right time to think about the long term.  Thinking a little about the long term may influence how you do things day to day. A little over time ads up to a lot.

Sure you feel overwhelmed, we all felt the same way, I am sure you will find that in time you can cope. A key part of that is sharing experiences with other who get it, Other T1 parents. Join an online community.Join a local group. Don't let diabetes make you feel alone.

You going to be fine. You being fine is how your kids are going to be fine.

More YDMV Newbie Tips: 

What is the Magic A1C

Our endo has flat out said he doesn't want to see our kids below 6.7. The ability to feel lows is a function of deviation from the norm and that when kid get A1C much lower they don't feel lows as much or at all.

He keeps telling us about one patient (fictitious for all I know) who's parents obsess with low A1C. The doc says the kid is in a constant state of hypo and the parents will not listen to his advising higher targets.

We usually don't get to the 6.7 anyway. The kids are growing like weeds. Growth takes energy, energy is carbs, carbs need insulin, by the growth comes in spikes and keeping balance is tough.

Teens need rational parents to cope with their relative lack of teen rationality. One thing to be rational about is not making diabetes care a symbol of parental control. If parents obsess about A1Cs the kids may rebel against the diabetes care not the parents and you want them to rebel so they move out after college. You also want them to be self sufficient in their diabetes care when the move out.

March 14, 2008

From The News Wire: There aren't enough Pediatric Endos

I am not sure this is big news to folks shopping for a ped. endo. they like but apparently there aren't enough of them. Good thing I really like ours.

25 or 6 to 4

Yeah I was a Chicago fan in my youth. Gotta love the horn section.

Does Anybody Really Know What Time It Is? Great question and one that comes up with our meters. For some reason our One Touch Ultra Smart Meters are dumb as a rock at telling time. They drift off time regularly. The recent daylight savings time spring ahead brings this to mind.

I just don't get it. Why can't they keep time. The little watch that come in a box of Frosted Flakes (Breakfast of those Champions who are Tigers) keeps more accurate time than these things do.

We have a small army's worth of meters. One Touch Ultra Smarts and Minis. (So far none of the downloadable Mini's but I figure we will load up on them next.) What the point of downloading data if the meter creeps off time?

The 20% +/- range of the meter I thought was in the BG not in the time of day.

Does anyone else have issues with the clock in their meter or is it just us?

March 13, 2008

Rate Your Endo

A buddy of mine started a blog rating Endos

So I went and found a story about our endo and CDE for him. It was on in the ThankShoe section where we write about great Disney Customer Service.

Here it is for those too lazy to click over to

Tina & Craig - CHOP

Tina & Craig are our CHOP diabetes team. Nurse/Coach and Doctor. They as great at customer care as the very best of Disney's celebrated customer service. Recognizing great service is what Thank Shoe is all about so here is the story.

We got to know Tina and Craig with Connor. They got to know us and coached our diabetes management skills. Good thing too because when Delaney came down with type 1 diabetes too, it was Tina & Craig who worked with us to keep Delaney out of a hospital and in the Theme parks.

In the theme parks?

Exactly, consider who's web site your on. They obviously have their priorities straight.

You see we were on vacation in Disney World. It was Christmas time and our first day in Orlando.

I had just driven through the Giant Disney parking tool booth heading to a restaurant, blasting Jimmy Hendrix on the radio unaware that I had Connors insulin needle on my ear.

Now for a variety of reason I don’t put a needle in my pants pocket.

  1. It is sharp, and if the little protector cap fell off, it could be fairly painful in a region where I would really prefer to 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.
  3. The plunger thing could get pushed in and the insulin pushed out and 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.

Sick humor but I thought was a riot to be driving abound with a needle on my ear, listening to Hendrix, at Disney. I found it so amusing I couldn’t even say 'Jimmy Hendrix' when relating the story with our teenager, Kelley, in the restaurant 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 and 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 curled up on my lap, kinda strange for a kid first day in Disney, ya think she would be bouncing off the walls. Man this kid is skinny.

At dinner, Delaney was drinking chocolate milk almost as fast they could bring it (And visiting the restroom just as regularly.) She needed another refill. Bobby Joe our waiter 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. (Click on the picture and look this stuff is 25 carbs a cup.)

Back at the hotel Connor was doing Bobby the waiter imitations. I was planning the morning with the kids. Delaney was still not feeling right and Kimball 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.

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 is 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 will be. Good thing I have two ears, I’ll need’m for needles - We have another diabetic kid. That counted as an unexpected trip twist.

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 $15,000.


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 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 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 for Tina. 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.

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 (I could have sworn I wrote a Thank Shoe page about him but can't find it - better get that done) 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 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 the 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 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.

Thank Shoe.

Craig was taking the family to Disney soon. We taught him the double hamburger with an extra roll trick. It was the least we could do.

Abbott Navigator Approved

Great News

From The News Wire: Canadian Cure Efforts

The neighbors in the Great White North are working on a T1 therapy, Islet Neogenesis Associated Protein. Even had the good manners not to mention mice, called it an animal study. Nice Eh!

So put on your tukes and surf over to read about it:

Meanwhile there is release from Breaking News on Supplements & Nutrition - Europe that suggest vitamin D (yes D) pills may prevent T1. No mention of cinnamon and in fairness it doesn't claim to be conclusive.

March 11, 2008

Back From Vacation

We took the troops to Disney World for their spring break that happens the last week of winter. We had a ball. A lot of the kids friends were there and they all got to play around with their peers. I got to take a bunch of the little kids to all the little kid rides and that was a blast.

Delaney needed to be cut way back on her basal rates and still was going hypo.

Disney still is totally pathetic with carb counts. They are actively committed to not providing them. The double speak is an E ticket ride.

Anyone willing to join a writing campaign to help them see the value to guest with type 1 is welcome to join in. More on that later when I figure out what to do.

It isn't good to be back, reality is over rated.

From the News Wire - Merck and Marcadia

Indianapolis startup Marcadia Biotech Inc. announced it has signed an agreement with drug giant Merck & Co. Inc. to help bring Marcadia’s promising diabetes therapies to market.

So what?

I never heard of them either.

Well they are trying for a more stable glucagon. News but not earth shattering. We had a few glucagon kits just in case but have never used one. YDMV

The company’s first product in development will address hypoglycemia, or low blood sugar. Severe hypoglycemia is most common in people with diabetes and occurs when there is not enough glucose, or sugar, in the blood to maintain the body’s energy level. Normally the body responds to low blood sugar by releasing the hormone glucagon, which triggers a sequence of events to restore blood sugar levels to normal. In people with impaired endocrine systems, this normal response does not occur. It may be possible to treat hypoglycemia by taking glucose tablets or by eating food or candy. In other cases that are more severe, glucagon is injected to restore adequate glucose levels.

Marcadia Biotech is developing an innovative and novel solution: glucagon that is stable in solution, enabling delivery via an injector pen. This will provide a product that is ready for immediate use in an emergency situation – no mixing will be required.