Sunday, April 30, 2006

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.)

Friday, April 21, 2006

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:

She also has this to offer:

Also check out Children With Diabetes - 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.

Thursday, April 20, 2006

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.

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.

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.

Wednesday, April 19, 2006

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.
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 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.

Thursday, April 06, 2006

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.