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Disney
with Type 1 Diabetes
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PLANNING Where
to Stay Transportation Ticket Information "Mini-mizing"
Costs Helpful
Hints Tips For
Families For
Guests without Children For
Travelers with Special Challenges Autistic Spectrum Diabetes Epilepsy Mobility Size Concerns: For
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Visitors Florida Residents
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by the Dunlaps of BadShoe.com and their Type 1 Internet Friends
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 AllEarsNet.com. 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.
Cool
People
Tips and Info from the Commune
On the bookshelfHelp from AllEarsNet.comMore from the DunlapsOfficial Disclaimer
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 AllEarsNet.com's contact us section, but I don't know how you get me the 20 bucks.
Abbreviation
and Definitions 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. 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.
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.
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
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.
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:
Deb Adds January 2007:
Carb Counts II
YBGMV (Your Blood Glucose May Vary) LOL maybe the single truest statement about T1 ever made, right?
We test like
mad. 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.
SideKick Meter
The ACCU-CHEK Multiclix Lancet Device
Free Palm Pilot carb and nutrition guide from USDA.
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.
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.
Redundant is the magic word for diabetics packing for Disney. * Redundant
Meter. 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.
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...)
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!
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.
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.
Sharps Containers:
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!
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.
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.
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.
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.
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.
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.
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.)
Water Water Everywhere... but $2 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 AllEarsNet.com shopping
page can point you in the right direction. Want some flavor? Take Crystal Light in small packages. No carbs, plenty of flavor.
T1
people should have one on all the time.
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
Roller
Coasters and BG Control 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).
Tips and Info from the Commune
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.
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.
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. 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. Here is a link to info about it: http://www.diabetes123.com/d_0i_191.htm 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. Children With Diabetes Conference at Disney CWD
FFL 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?
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:
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.... 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
For more information about Disney with Type 1 Diabetes, visit: http://badshoe.com/type1.htm
Disclaimer
(long and winded like all disclaimers, only partly a parody, serious but
hopefully funny too.) 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. |
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August 2007
Free
Drinks have Carbs
On
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.
YDMV
the Blog