You have new Picture Mail!

27 carbs

You have new Picture Mail!

Mickey rice crispy at pizza planet 27
cookies at pp about 60 vary buy type sugar and choc chip 65 oat less
details to follow

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DisneyWithDiabetes.com will soon be joining AllEarsNet.com. We are thrilled to be joining Debs, the site we consider the finest Disney Information source on the Internet.

We hope that we will be able to reach more T1 diabetics and hEAR tips and tricks from more people as a part of AllEarsNet.com

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."

Good point. 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!

Disney Dietary Needs Request form

Here is a link to the Disney Dietary Needs request form. Spring 2006 version as a word document.

http://badshoe.com/GUEST_DIETARY_MATRIX_legal_notice___updated.doc

FreeStyle Navigator™ Continuous Glucose Monitoring System

This look like just about the coolest diabetes management tool ever. Have a look and ask your endo team about it. Ours says they expect Abbott out over the summer and will have more visit at our next quarterly check up.

Here's some links for now:
http://abbottdiabetescare.com/freestylenavigator/qa.aspx
http://www.medicalnewstoday.com/medicalnews.php?newsid=45105
http://www.diabetes-symposium.org/index.php?menu=view&id=152

Bad News: Booby is no longer at WCC

Bobby the Kid has ridden of into the sunset. Whispering Canyon Cafe will never be the same and I see little reason to go back. Bummer.

Bobby was the best show at WDW.

We will track him down and report where we find him.

Cool story. I can't believe a beagle can be taught anything, we have two, so far they have learned where the food dish is but it may just be they look everywhere for snacks and periodically end up at the food dish.

http://www.washingtonpost.com/wp-dyn/content/article/2006/06/18/AR2006061800857.html?referrer=email&referrer=email

I wonder how WDW deals with his diabetes.

I wonder if they have better luck getting carb counts?

http://www.diabetes.ca/section_donations/disneyworld.asp

Free palm carb and nutrition guide.

This is better in that is is free than the one listed below. I would really like a carb data base that was easy to use and search, had a lot of stuff in it, and allowed for user favorites and customization (adding foods deleting items etc.)


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

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 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

She also has this to offer:

Also check out Children With Diabetes - http://www.childrenwithdiabetes.com They run their annual conference in Florida. This year it is at Seaworld but next year 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!

Great idea I should put that link on the side bar.

Bobby the Kid.

OK this doesn't have a lot to do with Diabetes at Disney but when you go to Disney World, book a night at Whispering Canyon for dinner and be sure it is a night when Bobby is working. Wait for one of his tables.

He is the best.

The best show at Disney World - bar none.

Great Guy.
Fun.
Crazy.

Did I mention that he is The Best!?

OK we claim he gave Delaney Diabetes and that is enough to get him on here but other than that he is tip top. (The story of Delaney's diagnosis is linked below some place.... we still blame him every time we see him)

The story of our first adventure with him is here.



Tell him you know us. BadShoe.com

He'll ask if you tip 100%. We did once. He was worth it.

Oh yeah and we bus his tables for him....

Another T1 parent posted over at the DIS about carb counting:

A 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 over 200 fast- food chains and restaurants plus offers free website support. This miniature book is a National Health Information awards 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 2 hous later, you can't take less! HAVE A MAGICAL DAY!

Good point Cindyrelly. We have one and take it with. 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 of both ZW and I to carry it.

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

Talk to your endo before going to WDW and making any changes to the insulin dose.

Our insulin use does changes with all the activity (walking.)


YBGMA (Your Blood Glucose May Vary) LOL maybe the most true statement about T1 ever made right?

On previous strips 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 night time 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.

Dear Mickey;
An Open Letter to Disney World

You do a great job with many disabilities. Maybe you can make the same effort for families with type 1 diabetes.

The thing we need most is counts of carbohydrates in the foods you sell so we can give our kids the amount of insulin they need. We are not crazy Atkins dieters gone wild. It is a Life Safety Issue Mickey.

I spoke with cast member Mark Jones of Walt Disney World Services for Guests with Disabilities. Mark said that he has not heard from guest that diabetes and carb counts is a concern.

Given my experience trying to surface the issue it is no surprise. It took me two years asking who is responsible for disability issues to get through to him. I expect that most folks give up in that time frame.

Here is a quick sample of comments from March 16, '06 on the American Diabetes Association parents forum:

One parent asked:
1) Has anyone visited WDW with their Type 1 child? Any tips? We are *considering* a visit this summer. But yikes, how to do with a 6 yr old with diabetes?
2) Related to question 1. How do you figure out how many carbs are in restaurant meals that you can't find listed in any of the carb guide books?

Another wrote back:
I went to Disney on February this year, 6 months after T1 diagnosis. I was extremely scared dealing with diabetes. Anyway, Disney was very stressful for me but My son loved it.

A third added:
We went to Disney over New Years. Our son is on the pump. Disney is great and very accommodating, but my biggest, really my only, complaint is that they have no carb counts for their food. You can bring in food of course, but at some point you will probably be buying Disney food.

So, on this one day, the idea of going to Disney with a type 1 child brought out the feelings of, “Yikes, Scared, Stressful, no carb counts.”

Some quick facts over 20 million children and adults have diabetes. Of that somewhere between 1 and 2 million are type 1.

One to Two million people who’s family thinks “Yikes, Scared, Stressful, no carb counts” when they consider vacationing at Disney World.

These kids typically do three to five thousand finger sticks, injections and/or infusions a year. That hurts a kid.

Just give us carb counts. It is the right thing to do and you will make more Mickey. Notice the one parent saying they carry in food so they know the carb count? You are loosing food sales Mickey my pal.

What do you say Mickey how about taking some stress, yikes and scared off these families and help make these families Disney Vacation Magic?

The Accu-Chec MultiClix

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 you pocket with a SideKick and you have a BG kit.

Six shooter barrels load the sharps, no way you or your kiddo gets an accidental cut from an exposed sharp.

http://www.accu-chek.com

From our Special Food Needs Form The Disney food people say:

It is the same Mac& Cheese everywhere, 40 carbs a cup.
Pizza planet Pizza 56 carbs / serving two servings per pie. They say they have 30 or 40 different pizza crusts, this was the one they could give me but it was the one I wanted too.
Same fries almost all places, 3oz = 20 carbs
Chicken tender = 11 per tender.
Chicken Nuggets 10 carbs 4 nuggets.
Choc Milk 26 carbs for 8 oz
Pretzel bread stick in Canada 17 per stick. (boy are they good)

Mickey Bar 31
Mickey Ice Cream Sand 36

That was about it.

Come candies said on the food label write Disney for nutrition info. LAME LAME LAME

CalorieKing.com has a handy but larger than pocket size book you can also download the info into a palm or Treo. (It ain't cheap to load two Treos but is an OK resource.)

This is Joel Shaffer and Delaney (with her cool hot pink pump case.)

Joel is the Special Food Needs Guy at Disney. Joel is a very good guy.

It took us two years and probably 4+ 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.

Get the diabetes on you priority seating records when you make a reservation.

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

Joel is at 407 560 4588.

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

We left Delaney 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. Oh and we trided 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.

You have new Picture Mail!

Sidekick in action

You have new Picture Mail!

The Queen of BG testing.

(You can tell by the crown)

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 feel 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.

SideKick Meter

Carrying around a lot of stuff at Disney can be a pain. We are trying to get our hands on Sidekick meters and strips from Home Diagnostics in Fort Lauderdale. It looks like an active D family's dream; a small easy to tote around meter. OK you still need a lancing device but this would make it a lot easier to do on the go testing.
http://www.homediagnostics.com/products-sidekick.asp

Right now the insurance co. is balking, nothing new there (dudes these things are cheaper then the strips we normally use, hello? save a buck!)

On the down side it doesn't store data for downloading to the PC but I think that is a fair trade off for small and easy to carry. The issue is BG and avoinding a low with increased activity.

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.

We will let you know how it goes.

Special Dietary Needs

Special Dietary Needs

Disney has a department for Culinary Development & Special Dietary Needs. Currently the manager is a very nice guy named Joel Schaefer. They have a from you can fill out for special diet issues. I think it was designed for food allergies but we filled one out for T1. We will post our experience on how it works out.

In all fairness I hit the guy on very short notice. Here is what he wrote.

Dear Mr. Dunlap,

Here is the information you have requested. Please fill out the dietary form with your children's dietary need and send it back to everyone in this email. We will distribute it to the leaders in the locations where you will be dining. Please indicate if you wish someone to contact you.

As I said on the phone, we will do our best to give you the carbohydrate count you requested, but we cannot guarantee we will have this information.

If you are interested in using the form, try his office at 407-560-4588.

Drop Mark a Note or Post Card.

Connor just got out of Children's on Halloween '03 just a few weeks before a BIG Disney trip. (a Big Birthday for Zurgswife a.k.a. ZW.)

On that trip we went through some diabetes newbie experiences. Assuming we could buy a soda when we need to cover a low, instead of carrying a juice box. Loosing a meter etc.

We also found out that Disney Cast Members (employees anyplace else but Mickey calls them CMs) at the rank and file level are spectacular with diabetes assistance if you say "I need help."

Unfortunately we found out they are kind of a pain about carb counts. All you T1 families know the look that asks, "Why are you asking about carb counts? You an Atkins freak?"

Disney is GREAT at many thinks. Carb counting ain't one of them.

Since then I have been trying to get through to a 'suit' to talk about it. I am persistent and motivated. I kept at it off and on for two years.

No luck.

I had phone calls unreturned. I got high and mighty letters patronizing me about the important of them not getting it wrong and my responsibility to get it right for my kids. Oh and the ever popular (raise you hand if you have heard this one T1 families) info on a few sugar free items

50 odd thousand employees. Ya think someone would have a T1 clue.

Well after two years I finally talked to honest to Mickey disability executive.

He said he had never heard a guest asking about carb counts for a T1 kid.

No kidding! Wonder why? Unreturned phone calls and sugar free maybe

Turns out he was a very nice, if well insulated guy. He just needs to hear from more T1 families

So if anyone stumbles onto my little blog and would like to drop the guy a note here's where to send it:

Mr. Mark Jones
Walt Disney World Services for Guests with Disabilities
Box 10000
Lake Buena Vista, FL 32830

The Story of Delaney's dx

We figured out Delaney was Type 1 the first day of a trip to Disney.
We had been through the whole Children's Hospital Experience one. That was enough.
The wrote up the experience as part of a trip report and posted it on BadShoe.com. here http://badshoe.com/lymi.htm scroll down to Zurg's Trip Reports it starts some place toward the end of Episode IV.

Redundant

Redundant is the word for packing for Disney.

Redundant Meter.
Double the needles.
Twice the strips.
Two bottles of insulin.
Two carry on bags each with enough stuff for the whole trip.

We have lost a meter, set down carry on bags and diagnosed a second kid as diabetic all on trips to Disney.

Pack doubles.

A classic tip, featured in the disclaimer below. We taught this one to our Endo so I figure that makes it a diabetes tip.

When at a Disney Counter service eating place with you kid order a double burger with an extra roll. You net two burgers at well less than the normal Disney price.