Type I diabetes

[Daydreamer64]

I did find this link at allears.net http://allears.net/pl/diabetes.htm Which had some great great tips. I called the phone number that they gave and within five minuted of me leaving a voice mail I was email all different types of forms to send to Disney. What great service I was so happy that I cried.

I've looked and can not find "the phone number" that you are referring to for leaving a voice mail for forms for WDW- what are the forms used for?

My middle son was just diagnosed Nov. 2006 and we are planning a trip- we would love to get the same great service and any help available to manage his health issues that was afforded your family-? Thanks for your help! I read the link and wasn't aware of any phone number- it might be because I keep getting bounced on by the toddler and can't seem to get any reading done in one sitting! TIA!

 

[Selket]

I've been to WDW a bunch of times with my type 1 son and I'm not aware of any forms they send you to fill out (except perhaps for a cruise).

Brenda Bennett will send you some info on sugar-free items at the parks if you're interested in finding those. So I really don't know what forms they would send. You do not have to complete any forms to get a GAC, etc.

***ah...I think I found what she is talking about from the allears website page on type 1: 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.

I've never done that form so I'm not sure what it gets you!

 

[SueM in MN]

I've been to WDW a bunch of times with my type 1 son and I'm not aware of any forms they send you to fill out (except perhaps for a cruise).

Brenda Bennett will send you some info on sugar-free items at the parks if you're interested in finding those. So I really don't know what forms they would send. You do not have to complete any forms to get a GAC, etc.

***ah...I think I found what she is talking about from the allears website page on type 1: 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.

I've never done that form so I'm not sure what it gets you!

Brenda Bennett's email address is in the disABILITIES FAQs thread near the top of the threads list on this board.

We've had a lot of posts from people with special dietary needs who have contacted WDW before they went on their trip. This is the first I have ever heard of a form.
If you do get one, please post some information about it.

 

[DISNEY4XMAS]

The form that was emailed to is a Guest allergy/ dietary form, I am sure it is the one that a CM fills out when taking your ADR. But IT may still be helpful. I am not sure what the other one that the Bennets had because Joel wasn't there to speak to on the day I called. But I also recieved the list of sugar-free items and a List of Portion Reference Guide from Quick service Localtion. I also recieved a letter from the food and beverage people that basically said that they can't break down the carbs exactly due to changing vendors often. If you would like copies I can email you the file that they sent me Just drop me an email at snuffy1991@aol.com and in subject line write Disney so if it happens to go to my junk I won't delete it!
I just know that everyone here has been sooooo helpful, I still have 5 months of planning to do but I am sure that with all the help that I have recieved here that we will have a great time and a little less worry some.

 

[Selket]

Ah....they sent me the same emails when I left a message a couple of weeks ago about my son have type 1 diabetes and a peanut allergy - but I got a bunch of other documents for the peanut allergy.

I think Bennett (Badshoe, Zurg...the one who wrote the FAQ at allears) has been on WDW so much about getting carb counts that they now just send us something that says "the heck if we know" before we even ask.

 

[jayandstacey]

I think Bennett (Badshoe, Zurg...the one who wrote the FAQ at allears) has been on WDW so much about getting carb counts that they now just send us something that says "the heck if we know" before we even ask.

GRRR!!! That is SOOOO frustrating, as Disney is a food FACTORY, cranking out thousands of the SAME thing every day! It isn't hard to determine a carb count from the ingredients of the prepared food or the source of the pre-made food. A dole whip is a dole whip. It has a carb count, and has for 30 years!

Disney ALWAYS finds the time to carefully research and provide up-to-date numbers to the right of every dollar sign for every food item. What harm would a carb count, available on request, do?

Sorry for the caps - This is one aspect where Disney is choosing irresponsibility over their lawyers' advice and their fear of negative press.

 

[Free61]

OOh I'm so happy I stumbled on to this thread! My DS15 is type 1 for 7years pumping for 4. We will be in WDW next month ( 29 days to be exact!) Other than the obvious Type 1 mom worries, I am concerned with highs. I'm afraid of the heat affecting the insulin and tubing. I am planning on filling a new cartridge every day so insulin is fresh daily. How have other pumpers handled this? I am planning on taking a vial of insulin to parks each day with syringes and site change.

 

[Selket]

I'm afraid of the heat affecting the insulin and tubing. I am planning on filling a new cartridge every day so insulin is fresh daily. How have other pumpers handled this? I am planning on taking a vial of insulin to parks each day with syringes and site change.

That is what we do. I might keep the vial of insulin at First Aid or in a Frio bag. We are going to the Children With Diabetes conference that starts Weds. and we were told they're giving each family a free Frio pack (for insulin vials - holds 2 I think) at registration. I might try that out! (As long as my back-up insulin I still have at the hotel - I wouldn't want to risk my only bottle).

We haven't been back to WDW in the heat since the last CWD conference 2 years ago and for those 2 days we spent in the parks both were terrible for William. The first one he was low ALL day - we could hardly keep him at 90 which is unusual for a 3 year old (he is 5 now). The next day it was a struggle to keep him out of the 400's. It can get hard for them in the heat. I have no idea what to expect this time!

I agree that WDW could do a better job with the carb info....especially for the CS and cart type items that are fairly consistent and not up to a chef's whims. At least with the Itskadoozie pops he likes it comes pre-printed with the carb info on the wrapper!

 

[Free61]

I plan on stopping at first aid everyday- unless I can hunt down a frio- pak. Keeping it with us would sure be much easier. And. yes I will have a spare bottle back at our resort. Whoever mentioned fruit snacks- that sounds just like us!! I'm sure we'll have some melted packs this August.
I would be interested in hearing about the Children with Diabetes convention. I am a great fan of the website.

 

[carrie s]

Im also planning my first disney trip with my DD who has diabetes.Christy is on the pump.I bought her a frio case to keep the insulin in her pump cool and another one so I can keep extra insulin with me,just in case.You can order it online http://www.coolerconcept.com/pages/inspumpwallet.htm

I also got her a fanny pack so she always has her meter and sugar with her.

 

[tinkerbell_29]

Hi everyone! I usually am over at the DVC threads or the DCL threads but when i saw this I thought I would put in my two cents worth.
I've been a diabetic since I was 11 and have been going to WDW long before that. I'm also a brittle diabetic hard to control and on a pump. My suggestions are. Go to Guest relations and talk to a CM about a GAC. I have one and use it only when necessary. Go early in the morning and late at night. It is not as hot at those times and insulin in a pump can litterally get cooked if it becomes to hot. Frios are great but do not seem to work when it is extremly hot outside. I usually use a small backpack type cooler to carry my stuff in and hey when it's hot it feels great against my back. Test, test ,and test. Even if you have a continous glucose montior you still need to test often. Signs of heat exhaustion can mask the signs of low or high levels. Stay hydrated. Diabetics can become dehydrated very quickly drink lots of water. First aid stations are a great place if you need a break from the heat. Wear a medical id bracellet the local EMT's look for them. Above all have fun anyone that has any type of chronic medicla problem needs a break from what daily life can be like and WDW is a great place for it. If anyone has any questions I'll be glad to naswer you are welcome to PM me.

Lissa

 

[ELoop]

OOh I'm so happy I stumbled on to this thread! My DS15 is type 1 for 7years pumping for 4. We will be in WDW next month ( 29 days to be exact!) Other than the obvious Type 1 mom worries, I am concerned with highs. I'm afraid of the heat affecting the insulin and tubing. I am planning on filling a new cartridge every day so insulin is fresh daily. How have other pumpers handled this? I am planning on taking a vial of insulin to parks each day with syringes and site change.

We have a Frio Pump Wallet and I put my sons pump in that. We just went to Epcot yesterday and it was a HOT 95 degree day. I also bring fans/misters and those help keep the kids cool. Luckily at Epcot there are a TON of inside rides so you are outside only to walk from one ride to the next. The Frio wallet help keep my sons pump out of the sun and cool (I put the wallet in the fridge overnight so it was cool all day).

 

[ELoop]

I plan on stopping at first aid everyday- unless I can hunt down a frio- pak. Keeping it with us would sure be much easier. And. yes I will have a spare bottle back at our resort. Whoever mentioned fruit snacks- that sounds just like us!! I'm sure we'll have some melted packs this August.
I would be interested in hearing about the Children with Diabetes convention. I am a great fan of the website.

I got an Igloo backpack from Target a few months ago and that keeps all our snacks and drinks quite cool. I froze some Capri Sun Roarin' waters and by the end of the 95 degree day they were still frozen!! I use them for ice packs thinking they would melt and we could drink them by the end of the day. NOT!! Even the water bottles I froze stayed frozen! I put my sons fruit snacks in that bag (along with strawberries, sandwiches and drinks for the whole family) and it all stays cool. I paid $26 for the backpack and a friend came down from Oklahoma for the CWD convention and she picked hers up for $22 on sale! It looks like a regular backpack but it's insulated so it keeps things cool (in my case TOO cool!) I had to set stuff out in the sun to defrost so we could drink them! I met up with some online families who came in early for the conference yesterday at Epcot. It was extremely hot outside!

Elaine

 

[Disney Von Drake]

By way of introduction, I have been a type 1 diabetic for 50 years. I use Humulin 70/30 insulin pens and I test with an Accu-Chek Aviva glucometer. My A1c is always in the range from 5.5% to 6.0%. I have no major diabetic complications. I have not gained this control by accident. As a young boy with diabetes (back in the 1950’s) I learned that if I did not control the disease, then the disease would control me.

Based upon my lifelong experience, I think using a GAC sends the wrong message to a child. A diabetic should learn to control their disease without special assistance. If the child learns that their diabetes entitles them to a perquisite, they will come to expect special treatment elsewhere. The less special treatment (both good and bad) the better! As the child grows up, he will find that the “real world” is not very accommodating for the diabetic.

 

[ELoop]

We go to the parks almost every weekend. Asking for a shade GAC isn't by any means sending my child a wrong message. We do get fast passes whenever we can and always do get them. There has only been one instance where the line was in complete 95 degree sunlight and I asked to sit in the shade to wait in line and they let us sit by the line in a shaded area. We did NOT get in any faster than anyone else and were happy to wait in the shade. At other rides, we stand and wait just like everyone else. Being on the pump, direct exposure to extreme temperatures can make the insulin less stable so we will ask for shade whenever we can! My son doesn't even know we have this GAC, I just told him we were going to sit over here and wait for the line to move.

Elaine
Mom to Daniel (9) pumping with Animas 1250.

 

[SplashMom]

We have two children that are Type 1--DS is 20 and was diagnosed at 11 and DD is 17 and was diagnosed at 7. Both have been pumping a bit over 4 years now and we have been to Disney many times with no major issues. We have had some highs and lows but nothing more than regular life with sports and stresses of school. We have never used a GAC. If it is really hot and the line isn't covered, I wouldn't bother waiting myself. We have gone many times in March, April/May, and August and although August is very hot, we didn't have any more issues than other times.

Test, test, test! As long as we knew what their levels were, we were fine. We usually find they have lows mid-morning (just in time for a mickey bar ) because that is our busiest time. We haven't ordered any special food but we do try to keep a fairly regular schedule. They eat desserts if they feel like them and just give insulin to cover the carbs they think may be there--sometimes we are off a bit but we correct after a few hours. We try to allow them to live as normally as possible. Since we only have two children and they are both diabetic, it is normal for our family. Neither feels different in the family. As they get older, they become more knowledgeable about their own bodies and knowledge is power. They control their diabetes, it doesn't control their lives--most of the time. As long as you plan to be flexible, test often, and enjoy each experience, you will have a blast! Happy planning!

 

[Disney Von Drake]

My son doesn't even know we have this GAC, I just told him we were going to sit over here and wait for the line to move.

That’s very good! It’s important that a diabetic child not use anything as an excuse in the control of the disease. They can and should lead a normal life without special dispensation. The steps they take to control the disease (insulin, testing, diet, exercise, etc.) will become second nature to them and will (with time) become no more intrusive than brushing their teeth.

If they learn good health habits early, it is more likely they will continue those habits into adulthood and become complication free AARP members!

Test, test, test! As long as we knew what their levels were, we were fine. We usually find they have lows mid-morning (just in time for a mickey bar ) because that is our busiest time. We haven't ordered any special food but we do try to keep a fairly regular schedule. They eat desserts if they feel like them and just give insulin to cover the carbs they think may be there--sometimes we are off a bit but we correct after a few hours. We try to allow them to live as normally as possible. Since we only have two children and they are both diabetic, it is normal for our family. Neither feels different in the family. As they get older, they become more knowledgeable about their own bodies and knowledge is power. They control their diabetes, it doesn't control their lives--most of the time. As long as you plan to be flexible, test often, and enjoy each experience, you will have a blast! Happy planning!

That is wonderful advice! When I think back to my childhood, I could tell you horror stories about how the disease was treated and how we were fed. The advent of the glucometer significantly changed the lives of all diabetics for the better. Test, test, test!

"Plan to be flexible" should be the mantra for all diabetics. Test, test, test! You've got it right!

 

[Lisa D]

In three weeks we are leaving on our first trip since DS 15 was diagnosed last September. Yes, we are maybe crazy for going in the heat of August but a 15 yo cannot easily miss a week of high school for a trip to WDW.

Jimmy is on the MiniMed pump but we're planning on taking all supplies in case we do a water park - he can't be off the pump more than about 2 hours without his sugar skyrocketing, so we'll have to do an injection that morning - anyone else do this?

I ordered the Frio wallet - many thanks for that link!

We have been to WDW many times before so I'm going to try to not be a vacation Nazi this time around. We are staying at the BoardWalk so we will hit the parks in the morning, relax at the BW pool in the afternoon, and return to the parks after dinner.

 

[carrie s]

In three weeks we are leaving on our first trip since DS 15 was diagnosed last September. Yes, we are maybe crazy for going in the heat of August but a 15 yo cannot easily miss a week of high school for a trip to WDW.

Jimmy is on the MiniMed pump but we're planning on taking all supplies in case we do a water park - he can't be off the pump more than about 2 hours without his sugar skyrocketing, so we'll have to do an injection that morning - anyone else do this?

I ordered the Frio wallet - many thanks for that link!

We have been to WDW many times before so I'm going to try to not be a vacation Nazi this time around. We are staying at the BoardWalk so we will hit the parks in the morning, relax at the BW pool in the afternoon, and return to the parks after dinner.

Minimed makes a waterproof pump case.I bought one for my DD for our upcoming trip.We tried it out at our local water slides and it works great.

http://store.minimed.com/mmStore/ap...il_direct.event&wlcs_product_item_key=MMT-145

 

[ELoop]

Will he be going on Lantus for the day when you do the water parks? That is what we do. We do Lantus the night before going because we've done the shot the day of the waterpark and by noon my sons sugar was 400!! So, now we plan ahead and give Lantus the night before and then take the Novolog pen with us to do shots while at the water park. To keep my son from spiking before the Lantus kicks in, I leave him hooked up to his pump for 2 hours after giving the Lantus. I do a decreased basal of -50% and then unhook him after 2 hours. That way he's not without a basal for the 2+ hours it takes for the Lantus to "kick in".

Have fun! If you are planning on visiting for a week etc. make sure you get a loaner pump to bring along "just in case" your pump should fail. We just called Animas when we went away for 1 week and then shipped us a loaner pump to take with us. We sent it back when we got home.

Elaine