Disney with Type 1 Diabetes

The Dunlaps

by the Dunlaps of BadShoe.com and their Type 1 Internet Friends

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Introduction

You are thinking about a trip to Walt Disney World. Good idea. If you are reading this section of AllEarsNet you are most likely thinking, "Hey Disney could be cool but I know how hard managing Type 1 diabetes can be, can I do both?"

You bet you can.

You can manage type 1 with knowledge.

You can manage a Disney vacation with knowledge.

It is ignorance that is dangerous.

The point of this little bit of cyberspace is to be a place to collect and share thoughts on successfully managing vacations at Disney World with Type 1 diabetes. We also hope it will be fun. Fun for those who read it and fun for those who contribute to it.

We are here for travel tips, not to give medical advice. Your endocrinologist can give the medical advice, we'll do the traveling. Please see the official disclaimer. (It's funny if nothing else.)

DisneyWithDiabetes is proud to join AllEars.Net. We don't expect you to read this front to back, not that you can't, but it is more of a reference tool, so feel free to use this handy table of contents to jump around.

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Table of Contents

Introduction

Table of Contents
How to Send a Comment
Abbreviations and Definitions
Philosophy
Just a few links
About us

Cool People
Carb Counts

Our Tips

Talk to the Doc
YBGMV (Your Blood Glucose May Vary)

Cool Diabetes Stuff

SideKick Meter
The Accu-Chec MultiClix
Free Palm Pilot Carb and nutrition guide from USDA
Frio Coolers

First Aid Stations in the Parks
Double Packing
If You Don't pack doubles
Fear of Flying
Put your Name on your Stuff
Call Mousekeeping for a Sharps Jar
NPH
Carry In Bag
You Can't Always Buy a Coke
Glucagon Pen
Cell Phones
Stupid Test Strip Tricks
Foiled!
Water
Medic Alert Bracelets
Disconnect the Pump
Roller Coasters and Blood Glucose
Disney Cruise Line

Tips and Info from the Commune

"Stroller Management"
Calorie King
Precision Xtra Ketone Meter
Children with Diabetes Conference at Disney

On the bookshelf

Help from AllEars.Net

More from the Dunlaps

Official Disclaimer

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Send Us Your Comments

Your comments, tips and suggestions for successful Type 1 Disney vacations are welcome. We'll publish almost anything, particularly if it comes with a 20 dollar bill (wink wink) to put into the Vacation Fund. You can also send in stuff through the magic of AllEars.Net's "Contact Us" link, but I don't know how you get me the 20 bucks.

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Abbreviation and Definitions
You probably know most of these but just in case:

A1C Hemoglobin A1C - a measure of your average blood glucose control for the past 2 to 3 months.

Basal - Insulin for basic metabolic functions, like breathing -- some folks think of it as background insulin.

Bolus - Insulin taken to cover the carbohydrates in food

BG - Blood Glucose

BS - BadShoe.com. No! Wait! Who said that? (The Dunlaps Fun Home Page)

Carb Counting - Counting the grams of carbohydrates in food eaten. A good way to know how much insulin you need to take.

Carb Factors - A means of calculating the amount of carbs you eat by weighing food and applying factors to that weight to calculate carbs. I hear it works great but it seems like a ton of work. Haven't tried it. YDMV

Dawn Phenomenon - An early morning rise on BG.

DWD - Disney With Diabetes

Endo - Your Endocrinologist

Exchange - A means of calculating food to insulin. Foods have exchange values based on relatively similar carbohydrate amount. I have enough trouble with carb counting. This is beyond me but it works for some folks and YDMV.

Hyperglycemia - Higher than normal blood glucose. You may need insulin. Symptoms vary. Know yours.

Hypoglycemia - Lower than normal blood sugar. Get sugar into you now. Symptoms vary. Know yours.

Insulin On Board (IOB) - Insulin you have already taken by shot or pump that has yet to be metabolized.

NPH - I have no idea what it stands for but it is the cloudy, 8-12 hour time release insulin.

Pancreas - The thing that stopped making insulin.

T1, Type 1, Type 1 diabetes - is usually diagnosed in children and young adults but even some young at heart adults are diagnosed. It was previously known as Juvenile Diabetes. In type 1 diabetes, the pancreas stops producing insulin.

WDW - Walt Disney World.

YDMV - Your Diabetes May Vary so do what works for you with the advice of your endo because what works for you works for you and what works for other may not. The only constant with T1 is that stuff changes.

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Philosophy

We are seeking a collective effort here with other Type 1 folks sharing their ideas, kind of a later day virtual hippie commune where we all put on tie dye and join in to raise a nice crop of tips for doing Disney with Type 1. About one person in 500 is Type 1 (unless it is our family, then it is 2 in 6.) T1 is stressful for everyone in each household it touches so Type 1 families can use a little fun now and then. To that end, I think we have a medical or at least mental heath need for Disney vacations! Call your Endo for an Rx and your travel agent for tickets!

Disney With Diabetes is going to be serious and silly about Type 1 and Disney. I believe in being serious without being solemn. I hope that doesn't offend. Those who confuse the two are in my experience not much fun at all and most likely to replace a grave demeanor for a thoughtful and caring approach to life.

Type 1 used to be called Juvenile Diabetes since the majority of diagnoses are made in younger people. Type 1 diagnosis isn't restricted to kids and while the majority of cases are diagnosed in younger people we have a good friend who was eligible for an AARP card when diagnosed. The goal of treatment is that the juvenile diabetic grows to become an AARP member with tightly controlled T1. Some non-juvenile T1 folks do not like to call what they have a juvenile condition so it is now called Type 1 Diabetes. Probably a bunch of delinquents.

There are other great resources on the Internet you can seek out to learn about Type 1. We will not try to duplicate their effort, rather this space will be about taking your diabetes to Disney World.

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Here are just a few links

American Diabetes Association on Type 1
American Diabetes Association Parents Web Board
Juvenile Diabetes Research Foundation
Children With Diabetes
Diabetes Medical News
About Insulin Pumps

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About Us

We have a vested interest in this topic as we have multiple DVC contracts, multiple T1 kids and are very regular Disney World vacationers. Our first was diagnosed at the age of 11 in Nov. '03, a few weeks before a big Disney trip. The second was diagnosed at the ripe old age of 7, the first day of a Disney vacation a year later. We have a funny trip report about that. Since that first diagnosis we have been trying to reconcile how to do Disney and be Diabetic. The Dunlaps

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Cool People

Joel Shaffer and Delaney (with her way cool hot pink pump case.)
Joel is a Special Food Needs Guy at Disney's Hollywood Studios. Joel is a very good guy. It took us two years and probably 5+ trips to find a good guy that could help with type 1 diabetes (and of the Disney dwarfs, we ain't Bashful).

His dad is on a pump so he has a little more empathy for what we go through than the average guy. He and his people can help some with carb counts info. Not a lot of help, yet, but some. Some is way better than none. Call Joel and ask for a Special Dietary Needs Form. You fill out the form and they maybe can get you some carb information.

Joel is at 407 560 4588.

Get the T1 diabetes on your Advance Reservations when you make a dining reservation.

The more of us who ask, the more Disney will get the idea that we are out here and need help in the form of carb counts to enjoy the Disney experience.

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Carb Counts

We are going to try keep a running list of Disney Food Carb Counts for anything we can get numbers on. Our family's focus is kids, as our diabetics are in fact kids. YDMV. So send in your varied Disney food carb counts. As you can see it is a short list so far but it is a start. What we have here we got from our Special Food Needs Form, sent to Joel's Disney food people in March '06:

Chicken Nuggets = 10 carbs 4 nuggets.

Chocolate Milk = 26 carbs for 8 oz

French Fries same almost all places, 3 oz = 20 carbs

Mac& Cheese (They say it is the same everywhere) = 40 carbs a cup.

Mickey Bar = 31

Mickey Ice Cream Sandwich = 36

Pizza Planet Pizza = 56 carbs per serving and two servings per pie or 112 for the whole thing. Disney says they have 30 or 40 different pizza crusts, this was the one they could give me and it was the one I wanted too.

Pretzel breadstick in Canada = 17 per stick. (boy, are they good)

Deb Adds January 2007:

Frozen Banana - sold at snack carts in themeparks: 160 Cal, 8g Fat, 20g Carb, 2g Dietary Fiber, 15g Sugars, 0% Cholesterol, 0mg Sodium 3mg Protein

Carb Counts II

August 2007

We attended the Children With Diabetes Friends For Life Conference at Disney's Coronado Springs Resort In July '07. Every food, beverage, meal, snack and even condiment served at the convention by Disney catering had a little placard by it listing the nutrition information and serving size.

The US Surgeon General took the time in his talk on health literacy to comment on how useful and valuable this information is not only to diabetics but as part of the very health literacy every American should seek out.

Free Drinks have Carbs

Club Cool in Epcot serves a bunch of sodas 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.

Nutrition Information Books at Counter Service

We heard a lot about these and with high expectations based on typical Disney execution were anxious to see how they help address the dietary need for type 1 diabetics to count carbohydrates. They don't.

You typical McDonald's does a better job of making dietary information available than Disney does with any of the nutrition notebooks we saw. I asked for them at a lot of different counter service places. About half the people asked had no idea what I was talking about. There is typically one book per counter service eatery. Finding it is half the battle.

They are poorly organized (if organized at all) bad photo copies of vendor wrappers and packaging that have no constant layout, data content or presentation bundled into a black looseleaf notebook. Some have section tabs and a few of those actually have the contents collected into the sections the tabs identify.

Clearly the goal was to collect information on ingredients not nutrition information. There are food labels where they could find something to copy but nowhere near all food items on the menu have food labels.

I would have been impressed if a street vendor had this kind of information but this is the Walt Disney Corporation. In the words of the Pixar villain Syndrome, Lame! Lame! Lame! Lame!

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Our Tips


Talk to the Doc - Talk to your endo before going to WDW and making any changes or be prepared to make changes to your insulin dose. Heat, activity and adrenaline change our insulin use dose.

YBGMV (Your Blood Glucose May Vary) LOL maybe the single truest statement about T1 ever made, right?

The kids testing in the parksOn previous trips we found the insulin load decreased, but this last trip our total daily dose was up for both kids. Maybe part was having pumpers who were more free to eat as they wanted, but the nighttime basal rates were up, too. So it wasn't just eating, they were high at night when tested.

We test like mad.
We test in the parks.
We test late at night.
Here the kids are testing at the Studios.

We were actually running low on strips and we pack a ton of extras. Don't make any adjustments to insulin without testing before and after the change.

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Cool Diabetes Stuff

SideKick Meter

Carrying around a lot of bulky diabetes stuff at Disney can be a pain. We got our hands on Sidekick meters and strips from Home Diagnostics in Fort Lauderdale. It's like an active D family's dream (OK, a cure would be a dream so keep up with the JDRF walks. Next in line for a dream would be Abbott's Navigator Continuous Glucose Monitoring System.)

(Psst! Hey Abbott! The Navigator could be reviewed here if you would just get it past FDA and get me one. Seriously, this thing is cool.)

OK, the SideKick may not be a full dream, maybe a daydream. It is a small easy-to-tote-around meter and that is cool enough for now. All you need is a lancing device. With one, this makes it a lot easier to do on the go testing. Just pop it in your cargo shorts. http://www.homediagnostics.com/products-sidekick.asp

Needless to say the insurance company is balking, nothing new there. Dudes, these things are cheaper than the strips we normally use, hello? Save a buck! Nope! No coverage. They like to buy the more expensive strips. Smart, huh?

It is still worth ponying up the cash for one of these. They are much easier to deal with while out in the parks.

On the down side, it does store data but you can't download data to the PC. I think that is a fair trade off for small and easy to carry. The issue is BG and avoiding lows with all the walking.

We walk miles and miles at WDW. As a result we tend to back off insulin so frequent testing is needed to make sure we are in the right basal ranges for the level of activity. Your mileage may vary, literally, test and adjust based on your insulin to activity sensitivity, if that is a real measure.

The ACCU-CHEK Multiclix Lancet Device

This is the lancing device to use at Disney. No changing sharps all the time. No sharps to deal with on the run. Toss it in your pocket with a SideKick and you have a BG kit.

It uses six shooter barrels to load the sharps, no way you or your kiddo gets an accidental cut from an exposed sharp. Very clever design, low risk of an accident, self-contained with a day's load of sharps.

http://www.accu-chek.com

Free Palm Pilot carb and nutrition guide from USDA.

I have this in my Treo cell phone so I never leave home without it. This is better in that it is free. It is fairly easy to use and has a good amount of foods.

http://www.nal.usda.gov/fnic/foodcomp/srch/search.htm

USDA released a new database in August 2006.

I would really like a carb database that was easy to use and search, had a lot of stuff in it, and allowed for me to do some customization like adding foods, deleting items, editing and grouping. Any palm database Einsteins out there looking for my undying gratitude drop me an email.

Frio Bags are Great

No, a Frio isn't an empty Frito's bag. It's a clever little cooling pouch. We were given one checking into the CWD conference a few days earlier. One night I played with it and on park day I a stuck a half a bottle and a pen in the pouch.

Well, it is really two pouches, one inside the other. The inside bag is made like a mini down jacket with quilted compartments, but instead of feathers its compartments have some water absorbing material in them. You know how disposable diapers swell up and hold "moisture?" Same general idea with the Frio but you use fresh water.

The water evaporates slowly over a few days. Evaporation is a cooling process. This keeps the little ski parka like pouch cool inside. The second, outside, pouch lets air through to facilitate evaporation and protects the ski parka like pouch inside, as well as, I think, keeping the moisture inside from getting stuff outside damp.

http://www.medicool.com/diabetes/diabetes_travel.php

(This is a bit out of a little Disney Trip Report I wrote:
http://ydmv.blogspot.com/2007/07/it-is-not-good-idea-to-store-your.html
about Insulin and an Easy Bake Oven go there to see how our Frio saved the day.)

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First Aid Stations in the Parks

Thanks for all the emails about the First Aid stations. It wasn’t so much that we forgot about them in the first draft of this little Disney With Diabetes epic but that we had not as yet had any first hand experience with them.

We do now. Probably the same day that this little part of AllEarsNet went online we were taking advantage of the MK First Aid Station to change an insulin pump infusion set.

So our impression was that it was a lot bigger, nicer and capable than we could have imagined. A great and clean place for a pumper to put on a new infusion set. We wear sets on the old gluteus max so a little privacy is appreciated at set change time and as clean as Mickey keeps the restrooms they don’t come up to sanitary standards for inserting an IV.

Beyond changing pump sets these first aid stations offer a number of services that we diabetic families may have need. A number of AllEarsNet readers sent in emails noting that the First Aid stations will store you insulin nice and safe and cool. That is a big plus on those screaming hot days when it may cook in the sun and go bad. Alert readers have also have pointed out that the First Aid stations will take and properly dispose of any used sharps.

Each theme park and water park has a First Aid facility. Obviously the Theme Parks have larger facilities.

First Aid Location

Magic Kingdom - Between Casey’s Corner and the Crystal Palace.
Epcot - The Odyssey Center Building between Test Track and Mexico.
Disney MGM-Studios – Next to Guest Relations Building near the Main Entrance
Animal Kingdom - Behind Creature Comforts in Safari Village
Blizzard Beach - Near Entrance between Beach Haus and Lottawatta Lodge
Typhoon Lagoon – Next to Leaning Palms

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DoublePacking

Redundant is the magic word for diabetics packing for Disney.

* Redundant Meter.
* Double the needles.
* Zillions of sharps
* Twice the strips.
* Two times the needed bottles of insulin.
* Call your pump manufacturer and get a loaner pump for vacation.
* Take double the sets, double the IV prep and twice the needed number of pump reservoirs.
Two carry-on bags each with half the stuff in each bag.

We have lost a meter, set down and walked away from carry-on bags and diagnosed a second kid as diabetic all on trips to Disney. I can say from experience it is nice to have extra stuff. Pack doubles.

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If You Don't Doubles Pack a.k.a. Phone a Pharmacy

If you need supplies the front desk at your resort can get you the number for a pharmacy that delivers. However just like you can't always buy a Coke, you can't always get what you want, but if you try sometimes, you just may find, you get what you need (whoa, I think I am having a 60's flashback...)

There is value here in using the big chain pharmacies. We were going to meet on Cape Cod (our first face to face with Delswife) and left our insulin behind at a friend's house (didn't double pack - idiots). CVS hooked us up with our Rx from our CVS at home. Nice feature of a chain.

Anyway back to Disney World, we couldn't find anyone in Orlando who stocked IV prep when we discovered we didn'’t take enough (didn't double pack - idiots). In this case, the only way we could find to get what we needed was to have a friend send a Fed Ex from our stocks at home. A bit of a pain: Think like Santa, make a list and check it twice and pack twice.

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Fear of Flying

Important Change to Airplane Regulations (August 2006) - Be sure your insulin has a prescription label on it that matches the name on the airline ticket. No liquids are allowed on the plane. Those traveling to and from Europe (especially the United Kingdom) have much stricter rules. http://www.tsa.gov/press/happenings/threat-change.shtm

You can carry your supplies onto the plane. You should. You may need them and you want to keep them in your possession anyway (can you say lost luggage?). You may need snacks, too. Snacks are good. Carry on lots of snacks. You never know when you will get delayed.

If you are lucky enough to have a meal provided during your flight, be sure to ask for a special diabetic meal after you make your ticket reservations.

Check your individual airline's information for Travel Tips, Traveling with Medications, Special Needs. Print it out and take it with you! Some airport personnel do not know their airline's policies! Southwest | Delta | United |

You should think about the implications of eating and shot schedules if you are crossing time zones. This is particularly true if you are using NPH. Diabetes knows no time zones, neither does NPH. The NPH will need carbs when the NPH needs carbs. Also the stress of flying can and will impact BG. Take your tester.

A travel alarm clock that shows two time zones on the clock face can be very helpful!

Some folks say you should tell the flight attendant before you test or correct. We test on the plane without saying boo to the flight attendant. I think we have done shots, too, but I don't remember. If you need juice or carbs, ring for the flight attendant. They are there for safety first, they will help.

It wouldn't hurt to let them know you think you are prepared, but want to give them a heads up in advance, but I see that as a matter of personal choice and a function of if you think you will need their help. My guess is that it will make them very attentive. Most flight attendants are cool.

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Put Your Name on Your Stuff

Putting your name on your stuff is a good idea. We use a label-er. It doesn't always help, however.

We left Delaney’s SideKick, a set and reservoir in our room at the Swan. We called lost and found, we stopped by the front desk, nope they don't got it.

Well, yeah they did. Passing through a few days later I checked the front desk. "Yes we have it. We tried to call but there was no answer."

Right. My cell tracks missed calls and has voice mail... well, anyway we got it back and we love the SideKicks.

On a another trip we lost a regular meter and days later it turned up. Interestingly, before it surfaced the Magic Kingdom Lost and Found found exactly the same meter (One Touch Ultra) and the Boardwalk Front Desk staff sent a car over for it. (We Love the Boardwalk!) It was however not our meter. If it had had a name on it I would have made a very serious effort to track down the owner. We sent it back.

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Call Mousekeeping for a Sharps Jar

Housekeeping at your hotel, AKA Mousekeeping if it is Disney hotel, will give you a sharps jar/container for your protection and theirs. Just pick up the phone and give them a call.

The Walt Disney World Swan and Dolphin request you call security for a sharps container. They ask that you call security again when you are ready to check out so they can retrieve the container.

I guess Doc must have been in charge as in August 2006, the All Stars gave us a “real” sharps container not the Dopey little thing the DCL was handing out, it is just Goofy anyone would try to use a sharps jar that the pokies can poke through. Also when we asked for a refrigerator at All Star Music we got a small refrigerator not the tiny meds cooler that some people have reported round about the internet. (YDDICRMV - Your Disney Diabetes Insulin Cooling Refrigerator May Vary)

The BadShoe crew has found that great sharps jars can be made from plastic Coke or water bottles. They are fairly tough and odds are you have one around.

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Disney Cruise Line

Sharps Containers:

The good news is there are sharps containers in the bathrooms at the Port.

The Bad News? The sharps containers on the ship itself are still horrible as of June 2007! They are pliable plastic, making it easy to stick yourself unintentionally if you are not ultra-careful.

Dining rooms on the Disney Magic and Wonder all offer either a no sugar added or sugar free dessert with lunch and dinner. It may not always be out (on dessert buffets) so just ask a server.

Sadly, the adult only restaurant Palo has no special dessert for diabetics and instead will go downstairs and get whatever is offered that night. I also made the mistake of thinking because they have awesome cheese on the Palo Brunch Buffet, I could get a cheese platter for my dessert at dinner. Well, I got a cheese platter alright, the same exact one that is served for Room Service. To his credit the Palo chef on the Disney Wonder did make me a Chocolate Soufflé one night with a sugar substitute - unfortunately it was not very good. However, I was very very happy that he at least made the effort!

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NPH

Like I said above, I have no idea what NPH stands for but it is the cloudy, 8-12 hour, time-release insulin. You know the stuff that gets you tied to a clock with a need to feed the insulin even if the kid doesn't want a snack. (OK, more often the kid wants a snack, but the NPH doesn't but you T1 folks know what I mean.) Our experience is it worked OK for the first few months but as our insulin needs became larger, it became less predictable.

If you are on NPH you will need to eat at specific times. You will need to carry carbs in case the NPH want to be fed NOW to avoid hypoglycemia (lows). To eat at set times you eat counter service or you make reservations for off times, you note on reservation that you have a T1 diabetic, you show up early and confirm the diabetic information on the reservation and make it clear you need to sit to avoid insulin shock. (You can try tossing out hypoglycemia, but my two cents is that the phrase "to avoid insulin shock" works fairly well.

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Carry In Bag

You can carry stuff into Disney parks. They do a little search of your bag. They never say a thing about your diabetes supplies, including syringes, other than possibly the occasional person who also is diabetic giving you a nice word of support. They don't care if you carry in food either.

So carry in supplies for the day and CARBS, you can't always buy a Coke... Wait, that thought deserves its own tip. (See below.)

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You Can't Always Buy a Coke

Strange as it may seem there are times when it is hard to buy a Coke (or other high carb beverage) at Disney. Sure there is a vendor every 8 feet when it is busy (and so are the vendors). However those vendors don't come out right when the park opens.

In fact we have had a low and had trouble trying to find something to bring it back up. Now if you get in this situation ask the nearest Disney Cast Member and tell them you have a diabetic kid in insulin shock.

You will get great service.

We had a guy doing trash duty, when asked where I could get a sugar drink and why, walk into a very crowded coffee shop first thing in the morning and help us get a juice. No line. No wait.

Then he was back to his trash duties with out hardly a chance for me to say thanks. Rank and file Cast Members are like that, very kind, very cool, very unassuming.

Anyway the point is you need to carry a juice or soda. There are times when nothing is open or what is open has a HUGE line. We carry stuff, Cokes, Sprites or juice, candy and glucose tabs.

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Glucagon Pen

Your choice. We have carried them and we have gone light and not carried them. I think the key for us is demonstrating control and testing. You are going to walk miles and miles, the heat has an effect and there are tasty snacks everywhere (unless you NEED them). If you are not sure about how your diabetic will react you may want your Glucagon pen.

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Cell Phones (I should get a commission for this.)

I think cell phones are a diabetes god send. Particularly as the little diabetics get more independent. They can call you and you can call them. OK you probably know that. You may not know that Disney hotels don't have a ton of outlets. If you take all your electronic junk-o-la and their chargers and you will not be able to plug it all in. Take extension cords with multi plug ends. I should get a commission from the extension cord people.

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Stupid Test Strip Tricks (I should get some payola for this one, too.)

One evening a few days after we diagnosed Delaney on a Disney vacation, we were sitting at the table waiting for our dinner. It had been a few days and the novelty was already wearing off. So to pass the time and lift her spirits we tested every liquid we could get our hands on. Coke was high, Diet Coke was an error, gravy was hard to get to wick into the strip. Beer was low. Sometimes you gotta be a little goofy to stay sane. You would be amazed how entertaining a half-dozen test strips can be.

Ketone strips can also be a source of similar amusement and I know people who have a hard time tasting the difference between diet and regular soda and use a (fresh) ketone test strip to test fountain sodas at restaurants to be sure they are getting the carb count they expect.

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Foiled!

We highly recommend the individually foil-wrapped ketone strips. We use Bayer’s Ketostix (tell the pharmacy NDC # 0193-2640-20). It took a few tries to get the local CVS to get the foil-wrapped ones. We like them because the strips don't get stale as fast as the ones in jars. (See the packaging that comes with the jars, you are meant to toss them all after a fixed time from opening.)

You should probably also see the tip listed below about the Precision Xtra Ketone Meter. We haven't used them yet, but we are excited about the idea.

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Water Water Everywhere... but $2.50 a Bottle -- Who's Gotta Drop to Drink?

Water is good for everyone. Disney sells it by the bottle at Disney prices. Try the Florida swamp water at the water fountain and you'll know how they get two bucks a bottle. Staying hydrated is real important particularly for the T1 crowd. Here are some tips on getting water without paying more than the cost of gasoline for it.

-- Buy a few cases of water. If you have a car the AllEars.net shopping page can point you in the right direction.
-- No car? We have used delivery services with great results. Just on water alone you pay the delivery fee on a case of water. Get a few cases. Seriously that extra case is only the cost of a bottle or two from Mickey.
-- We have also been know to take a Brita or other filter pitcher and even a screw-on the kitchen sink filter for our DVC resort.

Want some flavor? Take Crystal Light in small packages. No carbs, plenty of flavor.

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Medic Alert Bracelets

T1 people should have one on all the time.

Period.

I have talked to the local emergency squad chief and they look and they like to see a metal tag on the bracelet. Here are a few places we have used or others have recommended to us. Yes, style matters, so does the Medic Alert Tag.
http://www.n-styleid.com/
http://www.fifty50.com/
http://www.petitebaublesboutique.com/

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Disconnect the Pump

See your pump manual and follow the instructions for disconnecting on some thrill rides. Our pumps specifically say to disconnect for roller coasters, free fall and magnetic induction.

Better is Better
An Unabashedly biased, ridiculously one-sided passionate argument in favor of the Insulin Pump."
This site is highly entertaining and informative (I appreciate both and in that order) on the subject of insulin pumps. Check it out. Better is Better, even at Disney World.

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

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 Rollercoaster'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

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Tips and Info from the Commune

Pam Jarrell writes: Our 7 year old is a Type 1 diabetic and I wanted to share some things we learned on our trip in December 2008. First, make sure you get the form ahead of time to fill for your dining. You list all of your dining reservations and any specific things that you need to know about ingredients, preparation, etc. They will go out of their way to help you if they can. When you arrive at each restaurant, they will confirm that you have a diabetic in your group and will send the chef out to speak to you. One warning though -- every chef we spoke to said they were no longer allowed to give any kind of carb count information because of liability. What they did do was go over the menu with us or walk through the buffet with us and point out things higher in carbs than you would normally expect (one place said they added sugar their potatoes, another place had something that they cook with brown sugar, and so on). That made in much easier for us to estimate the amount of carbs our daughter was getting and adjust her insulin. The other thing we noticed after the first 2 days was that her BG was really high at lunchtime. So we started skipping her mid-morning snack and that got her lunchtime numbers back on track for the rest of the trip. Everyone at WDW, from the staff at restaurants to the security at the front gates, was very nice and worked with us to make our trip magical. We wouldn't expect anything less from Disney!

Be careful of "Stroller Management"

Pammers sent this note: "NEVER leave supplies in the stroller." I placed our small cooler with all of Joey's things in our stroller in a nice shady place (I couldn't bring it on this particular ride). While we were away, some well-meaning Disney attendant moved it into full sun and everything inside (including the insulin) cooked. Thank goodness I only live an hour and a half away and we could just go home to give him his next dose.

Moral of the story: never leave your supplies -- NEVER.

Disney does do what we call "Stroller Management." It is a kind of stroller round-up process that keeps the strollers corralled up in one space. Your stroller will move! So Pammers is very right you may want to carry your insulin or get a real good cooler with a lot of cool in it that can take the hot Florida sun. If you can't take your cooler on a particular ride tell the Disney Cast Member what it is and ask them for help. Most of the Cast are great about helping out. Thanks for that tip!

Amy writes: I want to offer one more stroller tip for those keeping insulin and D supplies in them. Since they move strollers around (and often park them far away or in the sun), we had Emma's stroller tagged with a wheelchair tag, sounds weird, but it allowed us to keep the stroller with us at all times, (restaurants, stores, shows) and take it into the rides boarding area. It kept her supplies and insulin safe, cool and easily accessible, and it was great that I didn't have to carry a bag on every ride. We've done it at WDW and Disneyland.

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Calorie King

Cindyrelly writes: The national best-seller pocket guide for 2006 is now available at local bookstores and discount stores. It's called CALORIE FAT AND CARBOHYDRATE COUNTER by Allan Borushek. It lists more than 200 fast-food chains and restaurants plus offers free website support. This miniature book is a National Health Information award-winner, which makes an easy portable reference guide in the parks, costing just $7.99. Main thing to remember, you can always take more insulin two hours later, you can't take less! HAVE A MAGICAL DAY!

Good point, Cindyrelly. We have one and take it with. (In fact we had a short note about it but yours is way better so we deleted ours.) You can also get a download into a Palm or Treo. I am playing with it in the test period. $30 to keep it in each Treo. That is $60 for both Mrs. BadShoe and I.

The jury is still out on it. We welcome suggestions for any other Palm-based carb databases. I think for $60 I may shop around. It works OK but seems to have a lot of extra stuff when all I want is the database. It has more information than the USDA but 60 bucks is a park ticket.

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Precision Xtra Ketone Meter --

Carol G. wrote: I highly recommend getting a ketone meter that tests the BLOOD for ketones. This is different than the urine strip ketone test. The meter is made by MediSense (now Abbott) and is the Precision Xtra. It tests the ketones in the blood - just like doing a regular glucose check with a strip except you are measuring ketones rather than glucose levels. The urine strip only shows you the ketone levels of several hours ago - the blood strip is accurate to the current time. We were able to tell within a couple of hours that his ketones were clearing out although the urine strips still showed high ketones.

Thanks Carol! We will let let you all know how we do with these meters. As it stands we bought the meters and the insurance company will pay for strips. However they (the insurance company) have an NDC code for strips in packs of 8 and the other guys (the pharmacy) can only get packs of 10 strips with a different NDC number. We have logged about 8 hours of calls between them and the other guys trying to straighten it out. Needless to say we are not holding our breath. We hope to get strips soon. We have very high hopes for this thing and will write a report once we have some experience with it.

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Children With Diabetes Conference at Disney

CWD FFL

Yeah, more meaningless acronyms! These stand for Children With Diabetes - Friends For Life. It is a conference held yearly in Orlando bouncing between Sea World and Disney's Coronado Springs Resort. http://www.childrenwithdiabetes.com/activities/orlando2007/report.htm

Carol G. wrote: Also check out Children With Diabetes - http://www.childrenwithdiabetes.com They run their annual conference in Florida. This year it is at Seaworld but they are back at WDW at the Coronado Springs Resort in July '07. The conference is for families and children and there are LOTS of great activities for the kids. It is wonderful meeting so many type 1's and their families. Many adult type 1's come too. The website has a great chat room and kept me sane during that first year!

Thanks again Carol. We are very interested in going in '07 even if it flies in the face of my credo of why go to Disney and go to a conference when you could be playing?

For more information see: http://www.childrenwithdiabetes.com/activities/

update August 2007: Now I have to admit I was a skeptic. (OK, I still am about a lot of stuff, not this anymore.) We went because a friend we met at a JDRF event raved about it.

It was outstanding. We learned a lot, some technical, more emotional about dealing with diabetes. The sessions were very good in helping us as parents of T1 kids. They were also outstanding for the kids. Our older was a little stand-offish about it. Admittedly he was missing swim meets and didn't have a great diabetes camp experience the summer before.

He was absorbed into a group of peers the first night and we hardly saw him again. He did say in one drive-by greeting in the convention exhibit hall (tons of bounty there from meters to back packs), "Dad that session today was great." Then he was gone.

He learned some interesting things about averages. From that he picked up on the idea that average BG isn't the same as stable BG. That was worth the trip right there. He also announced he wanted to manage his diabetes himself for 3 months.

OK dude, see ya later.

He was bummed that we wouldn't be going next year. He figured we only do Disney in Orlando so we wouldn't go the year it isn't at Disney's Coronado Springs Resort. He may be wrong about that, now.

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Help from AllEars.Net

There is a wealth of help for anyone planning a trip to Disney, including those with unusual needed including diabetes right here at AllEarsNet.com. Here are few links that may be helpful:

People with Special Needs Vacation at WDW

PassPorter's Walt Disney World For YOUR Special Needs

Special Dietary Needs

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On the bookshelf
Good books

The Dunlaps recommend:

Pumping Insulin by John Walsh, P.A., C.D.E., and Ruth Roberts, M.A. Published by Torrey Pines Press, 2000. 272 pages, paperback. -- Outstanding pumping reference book. Our pump manufacturer gave us a copy. Nice of them, huh? And we only bought $12g worth of pumps....

Understanding Diabetes, 11th Edition by H. Peter Chase, M.D. Published by the Children's Diabetes Foundation at Denver, 2006. ISBN 0-967-53985-4. The Pink Panther book.

Wizdom for Parents & Kids by the American Diabetes Association. Free by calling 1-800-DIABETES (in the United States). Nice non-threatening overview of what's going on. One for the kids, one for the folks. Ours came with other cool stuff too.

Calorie Fat & Carb Counter, The Pocket Guide by Allan Borushek, Family Health Publishing, CalorieKing.com
Just what it says it is, the pocket guide.

Deb adds:

The Unofficial Guide to Living with Diabetes - a great resource for the newly diagnosed (T1 or T2) and their families/spouses/partners/friends

Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin

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More from the Dunlaps

For more information about Disney with Type 1 Diabetes, visit: http://badshoe.com/type1.htm

YDMV the Blog

The BadShoe Crew started a living with Diabetes blog called (who didn't see this coming?) Your Diabetes May Vary. It tries to focus on some of the Zen of life with T1. You are warmly welcome to stop by for visit, we hope it's a little funny.

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Disclaimer

Disclaimer (long and winded like all disclaimers, only partly a parody, serious but hopefully funny too.)
This page is not and should not be taken as medical advice.

It is the miscellaneous ramblings of a Type 1 Diabetic family and their fellow Type 1 family friends. If you or anyone you know is a member of a Type 1 family you know they are amiable but stressed out folks who are happy share their experiences with others who "get it," a phrase that here means poke, pee, inject, inspect, infuse to insanity.

No two situations or diabetics are the same or as I like to say Your Diabetes May Vary (YDMV).

Take what you read here to your endocrinology team and talk it over with them. You with their consultation are responsible for your diabetes care. You have our very best wishes for A1Cs just under 7.

We talked to our Endocrinologist about ordering a double burger with an extra bun at Disney. Great counter service advice. While not a specific Disney with Diabetes tip well worth knowing and telling your Dr. if he or she is taking his or her family to Disney World too.

We are for better or worse the people responsible for BadShoe.com. That site may give you a feeling for our lack of a sense of solemn however it also does nothing for our claim of seriousness. BadShoe.com is written and operated by a certifiable lunatic.

BadShoe.com and DisneyWithDiabetes are NOT, IN ANY WAY, affiliated with The Walt Disney Company (well other than we regularly show up with buckets of money.) For Official Disney information, visit http://www.disney.com.
Also read the AllEars.Net Terms of Use Statement