WDW with Diabetes

[hobie]

My 11 year old daughter was diagnosed last week with type 1 diabetes. We (DD, 15, DS, 12, DD, 11) will be arriving at BCV on 8/8 for a week. Does anyone have any suggestions on how we should proceed with knowing what we are feeding her while in the parks? Any suggestions will be extremely helpful in my planning for her meals and snacks. We spend alot of time at WDW (DVC) but this is the first trip with the food challenge.

 

[jayandstacey]

Oh boy. I'm sorry to hear that - the good news is that you can manage type 1 and do just fine with it.

But as I'm sure you already know, it requires diligence and can sometimes be a challenge.

My DD was diagnosed just after her 1st birthday, she's 8 now and we've been to Disney for a total of about 28 days during that time. We've been in Nov, Dec and Aug. You can, and will have a great time, but as with all things diabetes, you all now have a little more to do to ensure that.

a few suggestions:

1. Keep checking her blood sugar levels OFTEN, about every hour or so. Try to keep her under control but also try not to "whipsaw" things by overreacting - for instance, if you eat a big meal, then check her an hour later, she might show 300 - but that might be OK, as the insulin may still be working.

2. Keep an eye on her. Watch her skin color, her temperment, her energy levels. If you have to: stop, get in A/C, check blood sugars, give food or insulin, relax a bit and come back out of it. It might take 20 minutes, but that's better than her passing out and requiring much more time and effort to get back on track.

3. Read, read, read. Read through this board, read http://allears.net/pl/diabetes.htm and of course continue your diabetes education. Knowledge really is power here and there's lots to learn.

4. Don't be afraid to act. Ask for help in the park, have your cell and call your nurse/doctor, etc. Diabetes has the nice feature that generally, bad things take a few hours to develop and can be reversed at any point with intervention. You're so new to it - if you see something you don't like, just reach out and ask what to do.

Welcome to the club no one wants to join. Hopefully a cure will allow us to disband this club someday, maintaining only the friendships.

Good luck and Enjoy - Jay

 

[Belle94]

I, too, am sorry to hear about your daughter. I have had type 1 diabetes for almost 30 years now. I was diagnosed at age 12. It may seem challenging right now, but I am happy to hear that it has not stopped you from going to WDW.

I agree with all that was said above. I only have one more thing to add. All that walking and excitement tend to lead to low BG's at might. Other than that, I have had no problems at WDW.

Have a wonderful time!!

 

[jayandstacey]

All that walking and excitement tend to lead to low BG's at might. Other than that, I have had no problems at WDW.

This is very true - and since you are going so close to just being diagnosed, I don't think you'll have a solid "sense" yet of how much insulin to give.

So to that end, if you are down there for a few days or more, you might just forget any patterns/trends you'll start to see down there. As you build a baseline of a few weeks (then months, then years) of reponses to different levels of excercise, heat and excitement on top of the food intake, you'll find that Disney typically presents an anomoly to any of the non-Disney trends.

I'd also ask your daughter to let you know anytime her body starts to feel different - hotter, weaker, sweatier, crankier, sleepier, etc, and check her sugar then. In Disney or not, you'll want for you and her to begin to associate particular feelings with paticular number ranges. Nothing complicated, just notes like "when I start to feel sweaty, I might be running high (and need insulin)" or "when I start to feel tired, I might be running low and need some carbs."

Of course, you can have normal blood sugar levels and feel sweaty or tired - but it NEVER hurts to use the meter and "check the sugar" as we call it.

SO to that end, Disney will be a good test of some extreme situations, especially in August. Try to note, mentally or on paper, the signs that preceed (or adjoin) any extreme number swings.

Oh - and don't panic too much over moderate swings. We try to keep our daughter between 75 and 140 or so - but sometimes 50 happens, and sometimes 400 happens. We try to avoid such numbers and learn why we see them, but just keep plugging away and trying your best.

 

[Belle & Ariel]

Sorry to hear of your diagnosis.

My son was diagnosed at 10 right before a cruise and I thought there was no way we could go with all the new things in our life. We went and had a great time and his numbers were good in spite of our having to guess at so many carb amounts.

For Disney I would be sure to bring a backpack with several juice boxes for low blood sugars and be sure to bring the glucagon--my son was so into the Disney excitement he did not pay attention to his body and passed out from a low. I don't want to scare you--we have probably been more than 50 days and this has only happened once--but it is so important to be prepared. We always bring about double the amount of test strips and supplies we would normally use in the amount of days we will be gone. Definitely bring extra insulin and phone numbers in case you need the doctor or refills.
Disney is not great about giving nutrition information, so if you can get carb info from your endo it would be great. There is a book called something like Calorie King or Carb King that has counts on a lot of restaurants and then a section for foods you might find at Disney. With DVC if you eat in the villa alot it will help in counting.
Finally, you will probably find that swimming will bring lows during and for several hours later. I would check blood sugar often and maybe increase the snacks during the day and at bedtime to avoid night time lows.
Have a great trip. The first one is the hardest and you will find this stuff to be the new normal soon.

 

[Selket]

I agree with everyone on the advice - and sorry to hear about your child's diagnosis.

I just wanted to add that you should visit the Children with Diabetes website - a lot of good things there including a great forum -especially the parents forum: http://www.childrenwithdiabetes.com

The CWD folks have a big conference every summer in Orlando - last month it was at Coronado Springs - next July it is at a Marriott in Orlando and folks will also go to Universal or IOA, etc. (they alternate every summer between Disney and Universal). This past conference was awesome as usual and there were about 3000 people - I think about 800 of them had type 1. The conference is for families and the children (with diabetes or not) have their own program. It is VERY much worth the trip -I cannot say enough good things about it - all of your children can participate. The parents go to sessions. There are vendors there from all the major pump/meter companies and other supplies (like a cgms). There are other CWD conferences too - check them out.

 

[Belle4mygrl]

Yes, I recommend CWD forum. I have received great advice and support.

My family went to DW just days after DD4 diagnosis in December. We did not have problems with lows because we were still trying to get her down. BUT we didn't have to deal with the heat or swimming (it was too cool).

Be prepared, the Chefs can not give you carb counts but they will be helpful tellling you what is made with flour, sugar, etc . They can measure your child's food.

Have a wonderul time and I am sorry you are having to deal with this.

 

[Belle4mygrl]

OH I forgot to say, Take a calorie king book. It is very helpful. If she has chicken strips you can get a pretty good count on those. Fries just have them to measure and proceed from there. Desserts........ we have difficulty in that. But the Calorie King book has funnel cakes, ice cream, brownies, and cookies. You might not have an accurate count but it is the best we can do. I have asked before for counts and no one can seem to help. sorry .

 

[hobie]

Thank you for everyones support. We have just spent the week in Sanibel getting it together before we head to WDW tomorrow. I think we may have figured out the extimating needed for restaurant excursions. We have also seen the swings in her numbers after spending hours swimming in the ocean and pool. I think we are starting to get it a bit. We have experience from family members having type 1 since they were children which allows us to understand a bit more. We have also relied on the support staff at Boston's Children's Hostpital. They have responded to all our obscure questions regarding her activity levels and mood swings this week. It has given us a view of what to expect when we get to WDW.

Thanks again!

 

[jayandstacey]

Thank you for everyones support. We have just spent the week in Sanibel getting it together before we head to WDW tomorrow. I think we may have figured out the extimating needed for restaurant excursions. We have also seen the swings in her numbers after spending hours swimming in the ocean and pool. I think we are starting to get it a bit. We have experience from family members having type 1 since they were children which allows us to understand a bit more. We have also relied on the support staff at Boston's Children's Hostpital. They have responded to all our obscure questions regarding her activity levels and mood swings this week. It has given us a view of what to expect when we get to WDW.

Thanks again!

Enjoy!
And please let us know how things went once you're back - I'm sure there will be people in the future in your same shoes - going to WDW so soon after diagnoses. Your perspective will be valuable to them.

 

[katml14]

I was really glad to see this thread. My daughter was just diagnosed with Type 1 Diabetes in June, the day after her first birthday. I was hoping to be able to take her and my mom on a girls trip to Disney in September but I have been really nervous about her blood sugar and also flying. Does anyone have any helpful hints/suggestions about flying and eating/giving insulin injections?

 

[Jen_in_NH]

I have to agree with checking out the Children with Diabetes website. My son was diagnosed 7 months ago, and it has been a really helpful site.

Definitely get the Carb King book, if you don't already have it. I've found that even if a certain restaurant is not listed, there is someplace similar with a similar dish to guess at the carbs. Not always perfect, but better than nothing.

Let us know how Disney goes for you - I'm heading down in December, and am curious to see how it will go.

Jen

 

[hobie]

We are back from a week at WDW. Everything went great. The staff throughout Disney (parks and resorts) were very helpful. Our daughter was able to eat what she wanted, when she wanted. All we had to do was ask to see the packaging for ice cream treats. Everyone was very accomodating. Since she is not big on experimenting with what she eats we were able to find her "meal staples" at most places that we went. This allowed us to work in the snacks that she wanted without having a problem regulating her glucose.

I had emailed DISNEY to get nutrition information and they sent me a form to use when dining in WDW. If needed you can complete the form prior to your reservations and the chef will meet with you when you arrive to see what special dietary needs you have. They even went so far as to weigh or measure the portions if you needed it.

I had fears that her glucose levels would vary greatly due to the heat and exercise. It never happened. Even after a full day at Blizzard Beach she did not have any high or low readings. Hopefully this will be the same when we get back into a normal school/sports schedule in September.

Thanks for everyones support and comments. We will be visiting WDW several times over the next year and hope to attend the Diabetes convention next summer.

 

[SplashMountainMama]

Wow! Sounds like you had an amazing trip! We leave tomorrow for a week in WDW...first trip since dx. Hopefully, our trip goes just as well.

 

[jimbostacks]

Glad you had a great trip....We just got back from a week and my 10 yr old was diagnosed 2 weeks before the trip. Like a lot of people we found out the hard way and he really went down hard, but after 4 days in the hospital and a week at home we did the trip and had a good time.

My son did great, the hard part was my wife calculating every meal, etc...and she always seemed to eat after everyone was almost done. My kid did have an ice cream bar and did have a couple low times where he had to eat an "airhead" to get it back up....but overall a good trip and something we need to deal with.

Looking forward to our next trip, where we will hopefully be pros at this. I think at the 6 month mark our doctors recommend the pump....but not sure that is better or not.....see ya...thanksk for the post

 

[SueM in MN]

We are back from a week at WDW. Everything went great. The staff throughout Disney (parks and resorts) were very helpful. Our daughter was able to eat what she wanted, when she wanted. All we had to do was ask to see the packaging for ice cream treats. Everyone was very accomodating. Since she is not big on experimenting with what she eats we were able to find her "meal staples" at most places that we went. This allowed us to work in the snacks that she wanted without having a problem regulating her glucose.

I had emailed DISNEY to get nutrition information and they sent me a form to use when dining in WDW. If needed you can complete the form prior to your reservations and the chef will meet with you when you arrive to see what special dietary needs you have. They even went so far as to weigh or measure the portions if you needed it.

I had fears that her glucose levels would vary greatly due to the heat and exercise. It never happened. Even after a full day at Blizzard Beach she did not have any high or low readings. Hopefully this will be the same when we get back into a normal school/sports schedule in September.

Thanks for everyones support and comments. We will be visiting WDW several times over the next year and hope to attend the Diabetes convention next summer.

Glad to hear you had an awesome trip and that things went well.

The information in bold type is available in post #3 of the disABILITIES FAQs thread in case anyone else is wondering how to contact WDW.

And, a question for people familiar with the Carb King book, I have seen a few apps for the iPhone and iPod touch that are designed to be resources for counting carbs. Does anyone use one of these and if so, do you like it?

 

[Jen_in_NH]

I love the carb king book. I have a Blackberry, and there is no app for it that I've found. But they do have a mobile website, so I can look stuff up if we're out and don't have it with us. It stinks if you have no service though

 

[daneenm]

And, a question for people familiar with the Carb King book, I have seen a few apps for the iPhone and iPod touch that are designed to be resources for counting carbs. Does anyone use one of these and if so, do you like it?

Yep. I use Restaurant Nutrition and Calorie Tracker by Livestrong. Restaurant Nutrition has info for many popular chains. i find that even if I am not at the exact chain, I can use one to guesstimate the other pretty closely. Livestrong has many more features that carb counting, but it has a database of both restaurant items and food you would cook at home. Really like them both and I think they were both free when I downloaded them.