Disney With Diabetes Blog

2007-07-27T10:46:00.000-04:00

Roses are Red
Violets are Blue
I had other thoughts
and split the Blog in two.

Disney With Diabetes is now part of http://AllEarNet.com. We figure joining with the best unofficial Disney site will get more eyes on the site and help more folks.

The diabetes section is: http://allearsnet.com/pl/diabetes.htm

New miscellaneous ramblings about diabetes are being posted at Your Diabetes May Vary

See http://YDMV.net
aka http://ydmv.blogspot.com/

2007-07-26T14:58:00.001-04:00

Of Independence and Angry Mobs

When in the course of human events at the CDW Friends For Life Conference I was in a discussion about data and how to get it to the care team people who needed it. The moderator asked about care teams and who were the key players we rely on to care for diabetes, specifically the endo, the CDE etc..

So everyone around the room was talking about how often they have a doctor visit and how much time was spent with the Dr. verses the nurse at a visit and so on. Folks talked about doctors they love and other told horror stories of doctors they bailed out on.

After a while of this the guy next to me, Mark, said something so brilliant it stopped me cold. He said, and this is a close as I can get to a quote;

‘My wife and I are our daughter’s primary care team.”

Doing!

That may have been the single best sentence of the week. I would say we hold these truths to be self evident but it obviously wasn’t evident to anyone else in the room until he said it. Then there was unanimous support for the idea.

Now I must be an idiot. (OK I know many of you are likely to have come to this conclusion yourself.) Our doctor has been making this point to us for years. He has no interest in us printing out charts and data just for him to see. Now if we use software to help us manage the care we give our kid and we want to work through an issue with him, he is more than happy to have a look at some printouts.

The next day at the CWD conference in one of the CGM meeting we were directed into talking about how CGM data could be sprung free from the little receiver and shot out to other devices and or members of the team. Specifically we were instructed to talk about how we would feel about it if the doctor could get be alerted to the data in near real time.

So off we go about getting information to the doctor. The device makers were read hot on getting data to the doctor, like doctors around the nation are sitting in the office with nothing to do but wait for the red phone to ring or something. That must be the way to getting stuff sold and or paid for, “get the doctor the data.”

Well in this second session, we the people staged a little uprising and were insisting we needed the data ‘cause we are the care givers when the manufacturer’s rep said something along the lines of, ‘Well, you know, only the doctor can make a change in therapy…”

This was followed by laughs and shouts to the contrary from the crowd. I did a healthy business in selling pitchforks, torches and other angry mob supplies.

The same doctor centered imagery was prominent in the displays around display booths in the trade show. Concerned looking older male models dressed as doctors pointing at some point on a graph on a computer screen so some younger female model could pose as a mom in a admiring nod while the picture was take.

So here is a problem. The gadget manufacturers don’t get the big idea that families are the primary care givers. I guess they can be forgiven if only one in twenty of us has the presence of mind to say the family is the primary care team in a focus group meeting.

We all need to get a grip! Software, IF it is going to be used in T1 households, is going to be used by primary care givers mom and dad or by the T1 patients themselves.

Before we got our first diabetic kid out of Children’s Hospital at age 9 Children’s was talking to us about looking to independence. Our goal was to raise a kid to independently manage his (then her when the second dx happened) own diabetes.

Someplace along that path to independence has to be for families to manage the freaking condition without an umbilical cord back to the doctor’s office. Yeah the doctor knows how to manage diabetes, our job was to learn it and teach it without that care becoming a teenage rebellion issue. (Sounds easy enough right?)

So all you manufacturers out there, make tools that support independence. Tying us tighter to a doctor electronically isn’t the goal. It is the opposite of the goal.

Independence is the goal.

2007-07-26T10:15:00.000-04:00

Children with Diabetes Frineds for Life Conference Session Notes

Talking to Your Teens - Natalie Bellini & Dr. Joe
It's Not Just a Numbers Game - Joe Solowiejczyk

I think these two sessions at the conference were outstanding. IMHO the whole of both was more than the sum of the individual sessions.

Natalie and Joe roll played the stereotypical fights between parents and teens over diabetes issues. It was like a “Best Of” compilation album sold by Time Life on late night TV. All the classic titles;

You Don’t Take This Seriously

Your Gonna Die!

What IS Your BG?

Did You Check

and the instrumental classic "Hover Over The Meter While They Check.

…. this and much much more. All your for just for just $19.95 plus shipping and handling…

Now their point, and this was a bit of a shock to me, wasn’t for us to brush up our arguing with our teen techniques. No their point was and is that as parents our stuff is our stuff and their stuff is there stuff. We love them. They love us. As parents we need to lead the family away from the classic fights and into sing another tune of parent teen communication. (can I beat this tune thing (drumb) any harder?)

Let the kids know you love them. Touch them. Tell them your fears as your fears knowing they may not share them. Oh and don’t hover over their shoulder while they test - Apparently it doesn’t make the meter read faster. (Who knew?!?)

…and more! Much Much More!

Joe is brilliant, wild and crazy.

It is worth the price of admission to the whole conference just to hear him explain what you should do if you expect your teen to come in and say, “Father, I have realized I need to step up and be more proactive in my diabetes care… and I will clean my room… and be nice to my kid sister.” The punch line is hysterical but in my book Joe should have a well earned copyright on his material so you will have to go to a conference to hear it, at the very least I am not giving it away. (I do wonder how well that bit translated to the folks from UAE.)

My take away from Joe was about actions, non-negotiable actions, in diabetes care. As parents we need to be consistent about boundaries. We don’t have to like diabetes. Our kids don’t have to like diabetes but just like dating (the dating analogy is also a fantastic piece of Joe’s coaching) or other household issues there are non negotiable actions like be home at midnight that have to happen or there are consequences. We can’t fall into the trap of feeling sorry about the diabetes that allows slack on the care non-negotiables.

Now I don’t mean to make Joe sound like a drill sergeant (but the though of Sgt Joe is a laugh, Sgt Pepper maybe...)He is as far from it as possible and there in lies the key to his message. I make a huge separation between serious and solemn. I think Joe is very serious about diabetes care and I am equally confident his isn’t often accused of being somber or solemn.

Now at first these two sessions seem very different, touch feely non argumentative dealing with teens vs. you don’t have to like it but you gotta do it non-negotiable Joe. The truth is they were both right on and both need to be part of the deal. Keep your junk, your junk, love the kids, be honest and firm on the non negotiable actions.

They are teens – keep in mind your own teen years and put into that the amazing responsibilities type 1 kids are faced with and be impressed.

I need regular reminding of the skills these things require. I think we do OK as a diabetic family but I figure some coaching is a good idea. I look at it this way, Tiger Woods has a swing coach so nobody is too good for some coaching.

Natalie and Joe are Animas team members. I have very high expectations and I can be as tough on Animas as any of Natalie and Dr. Bob’s teen arguments. But I can be taught so I have to say that I am please that Animas appreciates the need for and supports the non technical coaching that these folks do so well.

Yes Audrey you can quote me to me (and how about having them do there bits back here in Philly instead of everyone flying to Orlando? You have a nice meeting room there on the second floor in West Chester. ;))

2007-04-14T15:38:00.000-04:00

Over the Last few months I have seen a number of JDFR press releases about their Industry Discovery & Development Partnership Program¹ (IDDP.)

As a proud supporter of JDRF’s efforts to find a cure I am typically happy to read of some strange sounding, very technical program, to address some specific cure avenue or therapy for living with type 1.

Unfortunately I am curious. That curiosity has been trained with a degree in finance and a few decades of reading the business news. I kept wondering about things like “Partnership,” “participation in value creation,” “collaborative relationship,” and the particularly interesting “up to a level of $5 million per program.” In short I wanted to know what the deal is.

So I scoured JDRF’s web page. I sent a request into their contact us link. I found and heard nothing to end my curiosity. Some time passed and another press release came out. This had an email for a contact at JDRF. So I emailed some fair but blunt questions.

What is the relationship between JDRF and the for profit firm?
It appears JDRF is acting as a source of venture funding, what returns are expected, contracted or required?
What percentage of JDRF expenditures towards cures is involved?
Where is there a statement about JDRF decision makers and conflicts of interest involving investments in these IDDP firms?

They didn’t email back answers - They set up a teleconference.

I did more homework.

I was very impressed and please with the candid answers they provided.

Among the key points we talked about are:

JDRF has recognized that support is needed to transition academic discovery through the process of product development, trials and approval and into the daily lives of diabetic patents.
The partnerships are for very specific issues, bringing a product through trials for example.
These IDDP programs allow JDRF to help improve the quality of life for T1 families by encouraging movement of for profit firms into the market place with promising therapies.
These agreement help focus entrepreneur talent to being research through trials and to market.
The for profit partner must meet specific milestones to qualify to receive payments.
The for profit must demonstrate a matching commitment to the partnership program.
If the for profit chooses not to bring products to market based on the partnership, JDRF may use the intellectual property to bring products to market with others for profit firms.
If products come to market as a result of the partnership, the for profit will return a portion of revenue from the product to JDRF, up to a negotiated multiple of JDRF’s research support of the program.
This return of research funding is negotiated on a case by case basis. It is a means of continuing research funding for other promising projects related to JDRF’s mission.
While at this time these partnerships represent a fraction of total JDRF research funding (approximately 10 to 15%) it is hoped they can have a positive impact on quality of life.
JDRF treats these partnerships as it does other research funding. Specifically they are included as research support under program activities on JDRF's financial statement of activities. They are not broken out in JDRF's annual report.
The partnership programs are held to the same JDRF mission standards as other research expenditures and are a means of supporting specific program that are directly related to JDRF’s mission.
JDRF has specific ethical guidelines precluding conflicts of interest².

I was able to find a very detailed outline of one of the agreements in the 10K report of one of the IDDP companies.³ It was the full agreement redacted slightly to remove a few specific confidential items. From this and another firms annual⁴report I found that the possible return of research funds was between 3 and 5 times the JDRF funding.

I was comfortable with the explanations JDRF provided. I appreciate their need to balance disclosure and information overload. While many people would be more confused by some of the information I read than enlightened, I think that it should be more readily available.

I would like to see JDRF’s financial statements break out IDDP funding from more traditional pure academic research. (I would also like to see the funding for both IDDP and academic research broken out into key JDRF mission goals, like; Beta cell replacement, Beta cell regeneration, Auto immunity, Complications, Artificial pancreas, etc.)

JDRF’s 2006 financial statement⁵ says that 167 million was spent on programs. That is 86 cents on each dollar contributed. Management and fundraising was less than 15 cents out of a dollar contributed. This is very good ration of programs to operations. Of the 167 million 131 went to research and 36 to public education. I am told that IDDP programs are bout 10 to 15% of the research expenditure. Like I said I would be happier to see that broken out.

I have seen enough financial hanky panky that I would like to see JDRF statement of financial ethics backed up with some kind of an independent confirmation of compliance, particularly where up to 5 million dollars per project is being advanced to for profit firms to speed bringing advanced technologies to our children’s care. To me work to a cure is too important not to have such ethical practices prominently stated and audited.

Bennet

Dad to two T1 kids.

If you would like to join our effort to help JDRF click here to buy a
Love Ya /Mean It Pin!
http://badshoe.com/lymipin06.htm

Useful Links and notes.

¹JDRF IDDP Program
http://www.jdrf.org/index.cfm?page_id=103249
http://www.jdrf.org/files/Industry/handout%20industry%20doc.pdf

² JDRF Statement on Conflicts of Interest

http://www.jdrf.org/index.cfm?page_id=105584

³Sangamo BioSciences, Inc. (Nasdaq: SGMO) SEC filings

http://phx.corporate-ir.net/phoenix.zhtml?c=120938&p=irol-SEC

⁴Transition Therapeutics Inc. Financial Reports

http://www.transitiontherapeutics.com/ir/financials.php

⁵JDRF Financial Statements

http://www.jdrf.org/index.cfm?page_id=100991

2007-04-14T14:22:00.001-04:00

I read a lot of type 1 diabetes news. Google is particularly good about sending me a daily email with news clippings. If you are interested in getting the same thing click here:

http://www.google.com/alerts?t=1&hl=en&q=diabetes+type+1

You have new Picture Mail!

2006-08-15T17:36:00.000-04:00

27 carbs

You have new Picture Mail!

2006-08-15T13:52:00.000-04:00

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

2006-07-31T17:18:00.000-04:00

We have joined AllEarsNet.com. Click here to go to the new site.

2006-07-15T12:13:00.000-04:00

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

2006-06-29T17:03:00.000-04:00

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!

2006-06-25T20:21:00.000-04:00

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

2006-06-25T19:09:00.000-04:00

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

2006-06-25T19:07:00.000-04:00

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.

2006-06-21T10:04:00.000-04:00

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.

2006-06-21T10:00:00.001-04:00

I wonder if they have better luck getting carb counts?

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

2006-04-30T21:40:00.000-04:00

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

2006-04-21T18:11:00.000-04:00

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.

2006-04-20T21:54:00.000-04:00

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....

2006-04-20T21:45:00.000-04:00

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.

2006-04-20T21:40:00.000-04:00

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.

2006-04-19T21:50:00.000-04:00

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?

2006-04-19T20:34:00.000-04:00

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

2006-04-19T20:19:00.000-04:00

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.)

2006-04-19T18:50:00.000-04:00

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.

2006-04-06T20:18:00.000-04:00

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!

2006-03-30T10:28:00.000-05:00

Sidekick in action

You have new Picture Mail!

2006-03-29T11:17:00.000-05:00

The Queen of BG testing.

(You can tell by the crown)

2006-03-22T13:46:00.000-05:00

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

2006-03-22T09:20:00.000-05:00

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

2006-03-20T22:44:00.000-05:00

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.

2006-03-20T22:43:00.000-05:00

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

2006-03-20T20:44:00.000-05:00

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

2006-03-20T20:30:00.000-05:00

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.

2006-03-20T20:12:00.000-05:00

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.