Type 1 Diabetes in Disney

[anorman]

We have been to Disney every year for the last 5 years....this will be our 6th trip with our daughters this coming August. However, this will be our first trip since our DD10 has been diagnosed with type 1 diabetes (insulin dependent). I am hoping that there are people out there in DISboards-land who have travelled this road before and can help us out with some tips in dealing with diabetes in Disney. Any advice of any kind would be helpful.

Is there anything I should be concerned about in particular? Should I expect lows due to increased activity or highs due to not as careful carb info? Any special equipment I should consider purchasing? She is on the pen so far; the pump will be available to her hopefully within the year.

 

[minniesfriend]

and we go to Disney at least once a year. He really doesn't experience many lows because we have to eat out and his adrenaline is flowing; he's usually high. Test frequently, bring more supplies than you will need (including sugar and nighttime snack), request a location close to a food court, and download an app that has a carb counter.

I will pm you some helpful links.

Best wishes to you and your family. Hang in there...

 

[nicoleakr]

I actually have two children with type 1 diabetes and we have traveled many times to DW. I would say yes expect low's with the heat and activities. Also I would suggest getting a GAC it does help. It's does not get you to the front of the line but in an area where there is more shade or possibly A.C. For example we used in a space ship earth and instead of waiting in the line outside we were inside in the A.C. we probably had a bigger wait but not being in the sun was worth it. I would pack a bag with peanut butter crackers and etc and juice box. Also depending on their condition sometimes we will have the kids drink a juice or regualr pop to prevent a low. If you DD is on the pump be careful of test track, it shorted out my DD pump and we had to have a new one overnighted to the hotel. If you have any questions please please private message me. My DD has been a type one since she was 3 she is now almost 16 and my DS has been a type one since he was 6 and he is now 10. it does get easier!

 

[DEA]

Type 1 diabetic here (for the past 30 years), and I've found that the big things for me are:

1. Everything seems a little bit magnified: the activity level isn't just higher, it's fairly constant, so your muscles may not stop asking for fuel, which means blood sugar will be lower than normal. Similarly, when you do stop activity, it's usually to sit down and eat, so the carbs will be hitting when your body is not requiring more fuel. So, any adjustments that you make with insulin should be slow and gradual.

2. For equipment, because of the pens, you may want to get (if you don't have one already) one of the little cold packs from Frio or another manufacturer (and I haven't used them, so I cannot make a recommendation) for keeping things cool in the Florida heat. I'm on a pump (OmniPod) and haven't had trouble so far with the heat causing any degradation of insulin efficacy, but having a static store of insulin, like a pen and refills for the pen, would cause some concern if it were not kept cool.

3. Stay hydrated and keep cool. For me, getting too hot and dehydrated can mask hypoglycemia symptoms.

4. Make sure to indulge a bit. Okay, so maybe the chocolate chip cookie ice cream sandwiches that are as big as a 5yo's head are not the best thing for a T1 diabetic, but there are plenty of little indulgences around the parks that have sugar in them, and as long as you're monitoring blood sugar, you can offset those with insulin and exercise. Also, keep in mind that sugar-free offerings often have just as many, or close, carbs as the sugar-ful ones. And they taste worse, invariably. That being said, the restaurants do put out some very good no-sugar-added desserts that may be more healthy in general.

5. Along with that, sugar to treat hypoglycemia is usually pretty handy. If you get caught out without something, a quick trip into any store will let you get your hands on some prepackaged candy.

6. Work with the chefs in the restaurants. Disney (at least at WDW) is great about all dietary concerns, and you can usually talk with a chef at the TS restaurants about the nutritional information for the dishes. Counter service restaurants may be a little tougher, but it never hurts to ask. Low-carb options may require you to venture into the adult side of the menu at times, as a lot of the kids' offerings can run to mac and cheese, pasta, Uncrustables, and the like.

7. Have fun. Your DD is still the same kid, and will enjoy all of the same stuff. Looking at Disney as an enemy (Ack! Carbs in the food! Ack! Lows from walking around all day!) can add stress to your life, and to hers, as well. Just keep up your regular testing, make sure you calibrate her CGM if she has one, and test before giving any insulin, and know that, should anything happen, Disney has first aid stations in every park, and lots of cast members who are there to help you.

Good luck, and enjoy your trip.

 

[anorman]

Type 1 diabetic here (for the past 30 years), and I've found that the big things for me are:

1. Everything seems a little bit magnified: the activity level isn't just higher, it's fairly constant, so your muscles may not stop asking for fuel, which means blood sugar will be lower than normal. Similarly, when you do stop activity, it's usually to sit down and eat, so the carbs will be hitting when your body is not requiring more fuel. So, any adjustments that you make with insulin should be slow and gradual.

2. For equipment, because of the pens, you may want to get (if you don't have one already) one of the little cold packs from Frio or another manufacturer (and I haven't used them, so I cannot make a recommendation) for keeping things cool in the Florida heat. I'm on a pump (OmniPod) and haven't had trouble so far with the heat causing any degradation of insulin efficacy, but having a static store of insulin, like a pen and refills for the pen, would cause some concern if it were not kept cool.

3. Stay hydrated and keep cool. For me, getting too hot and dehydrated can mask hypoglycemia symptoms.

4. Make sure to indulge a bit. Okay, so maybe the chocolate chip cookie ice cream sandwiches that are as big as a 5yo's head are not the best thing for a T1 diabetic, but there are plenty of little indulgences around the parks that have sugar in them, and as long as you're monitoring blood sugar, you can offset those with insulin and exercise. Also, keep in mind that sugar-free offerings often have just as many, or close, carbs as the sugar-ful ones. And they taste worse, invariably. That being said, the restaurants do put out some very good no-sugar-added desserts that may be more healthy in general.

5. Along with that, sugar to treat hypoglycemia is usually pretty handy. If you get caught out without something, a quick trip into any store will let you get your hands on some prepackaged candy.

6. Work with the chefs in the restaurants. Disney (at least at WDW) is great about all dietary concerns, and you can usually talk with a chef at the TS restaurants about the nutritional information for the dishes. Counter service restaurants may be a little tougher, but it never hurts to ask. Low-carb options may require you to venture into the adult side of the menu at times, as a lot of the kids' offerings can run to mac and cheese, pasta, Uncrustables, and the like.

7. Have fun. Your DD is still the same kid, and will enjoy all of the same stuff. Looking at Disney as an enemy (Ack! Carbs in the food! Ack! Lows from walking around all day!) can add stress to your life, and to hers, as well. Just keep up your regular testing, make sure you calibrate her CGM if she has one, and test before giving any insulin, and know that, should anything happen, Disney has first aid stations in every park, and lots of cast members who are there to help you.

Good luck, and enjoy your trip.

The frio bags look like a good idea. I'm going to look into getting one of these for sure. I know my DD10 will be happy to hear that she can have some usually forbidden treats (not full portions of course.............which just gives me an excuse to eat all those yummy sweets she will not be able to finish!).

 

[zurgswife]

To bad your not going July 9-16...there is a huge 2000+ people Diabetic conference that is directed toward T1D kids and caregivers...though there are many T1D adults that participate too. Friends for Life Conference is amazing.

I'm a parent of 2 T1D teens. My second child was dx at age 7yrs while we were on a trip to WDW. We have been going to Disney at least once a year for the last 10 yrs with 2 T1D kids.

YDMV (Your Diabetes May Vary) but it has been my experience that many people do go low from the excessive exercise. So, decreasing basals slightly is always an easy alternative to pushing extra carbs.

The restaurants are getting better at carb counts but you should pretty much figure that you will have to do your best estimate.

We have never had issues regarding pumps and rides. The magnet rides at WDW don't have the power that is supposed to cause issues. Yet, each to his own.

We have never had issues regarding the scanners at the airport and don't think we have experienced the new Xray machines; word of warning a parent recently on vacation with there child went through the new Xray machine at the airport and then the pump had issues. She called the company and her warranty was immediately voided. They replaced the pump because the machine seemed to cause an issue but she will no longer have any type of back up regarding pump issues. So, be very cautious about what you expose the pump to....

Testing is your best defense to a smooth vacation.

 

[zurgswife]

The frio bags look like a good idea. I'm going to look into getting one of these for sure. I know my DD10 will be happy to hear that she can have some usually forbidden treats (not full portions of course.............which just gives me an excuse to eat all those yummy sweets she will not be able to finish!).

Frio bags are great and easy to use.

Forbidden treats?? Unless they are just not something your entire family doesn't eat; there isn't anything a T1D can't have or should be forbidden.

 

[anorman]

Frio bags are great and easy to use.

Forbidden treats?? Unless they are just not something your entire family doesn't eat; there isn't anything a T1D can't have or should be forbidden.

Ice cream does tend to send her readings through the roof but if her carb requirements are increased, then she should be able to enjoy these like she did on our past trips! I KNOW she will be happy to know this since it was one of the things we all very much looked forward to in the hot, hot, hot August heat.

 

[anorman]

To bad your not going July 9-16...there is a huge 2000+ people Diabetic conference that is directed toward T1D kids and caregivers...though there are many T1D adults that participate too. Friends for Life Conference is amazing.

I'm a parent of 2 T1D teens. My second child was dx at age 7yrs while we were on a trip to WDW. We have been going to Disney at least once a year for the last 10 yrs with 2 T1D kids.

YDMV (Your Diabetes May Vary) but it has been my experience that many people do go low from the excessive exercise. So, decreasing basals slightly is always an easy alternative to pushing extra carbs.

The restaurants are getting better at carb counts but you should pretty much figure that you will have to do your best estimate.

Testing is your best defense to a smooth vacation.

I am quite surprised that Disney doesn't cater more to the diabetic requirements for information. They seem to do a phenomenal job with allergies and other food limitations.....why not make carb information available to all those who need it? Diabetes is hardly uncommon these days. It seems that this is something that Disney should definitely address and rectify. They are so great about so many accommodations, then why not this one too?

Testing will definitely be my friend when we are there.....particularly for the first few days until we see what effects the increased activity, heat, and food will have on her levels. It will be a learning curve for sure!

 

[Cheshire Figment]

I would suggest going over to the disABILITIES Forum. One of the first threads is the disABILITIES FAQs. On Post #3 we have a lot of information for people many different problems, sorted by type. To get directly to the disABILITIES FAQs from here just click on the link in my signature.

There are also several threads, usually on page 1 of the index, related to diet and/or diabetes.

 

[ttintagel]

I test twice as often as I do in the outside world. Symptoms of highs and lows are easy to miss due to fatigue, excitement, heat, distraction, etc.

The rep who trained me on my Omnipod said she did NOT recommend going through the new X-ray scans at the airpprt, so when they wanted me to go through one at MCO I opted for the patdown. Better safe than sorry, I figured.

I guess I must be some kind of freak because my diabetes absolutely does NOT make me more sensitive to heat than people who don't have it.

 

[anorman]

I would suggest going over to the disABILITIES Forum. One of the first threads is the disABILITIES FAQs. On Post #3 we have a lot of information for people many different problems, sorted by type. To get directly to the disABILITIES FAQs from here just click on the link in my signature.

There are also several threads, usually on page 1 of the index, related to diet and/or diabetes.

Thanks! I'll check it out.

 

[EvilQueenT]

my soon to be son in law is a type 1 now age 25 diagnosed in his early teens has gone with us 4 times. he's very well controlled with great a1c's. we only had an issue on one trip, last may, it was warm but not super hot by florida standards (and we all live in florida) but he ended up underestimating how much activity he was really doing and how much he was sweating thinking he was taking in enough to compensate but around 7am the next morning my daughter came into my room (i'm an arnp and at that point very happy we were in a treehouse villa and not separate rooms) to help him because he'd dumped really low. he'd forgotten to pack his glucagon so we had to call ems. they got there wicked fast. i'd suggest you're best at either testing regularly so you're eating enough to keep up with the extra activity (especially if they're not as busy in their day to day life) and not stressing if they run just a little higher than normal (not super high of course but a little higher with all the extra activity isn't anywhere near as big of a problem as them dumping during the wee hours of the morning).

 

[PrincessPaczki]

Great thread with alot of wonderful tips and encouragement!! Thanks!

 

[Laura]

My DH has type 1, and I just want to reiterate zurgswife's comment that there is no "forbidden" food at WDW (or anywhere else).

Let her enjoy herself, count those carbs and test, test, test. You'll get the hang of it.

 

[GrandCalifornian]

Just joining in to offer what advice and support I can. I am a type 1 diabetic, diagnosed in my early 20s. I agree with the advice offered here, and personally I find that the activity at WDW keeps numbers lower than they otherwise would be. Test test test, and carry plenty of low snack. My current favorite is Welch's fruit snacks, since they come in small bags and I can carry a few in my pocket and they don't melt or get gross. I really enjoy my treats at Disney, and by monitoring and taking for special treats (including ice cream) I find I can have what I want. Again nothing is forbidden, just everything has to be accounted for and managed. My Wife likes the term "dumping," we will use that now. It does happen. Another tip for the future along the lines of testing is look seriously into a CGM (continuous meter). Our last trip to Disney was my first with one, and it really helps stay on top of things. My wife literally sleeps better at night now that I have it and it takes care of alerting me about dropping blood sugar.

I use a neoprene case for my pens, and it is actually a sunglasses case from Disney World. It keeps them somewhat insulated, although I make sure to only carry one pen at a time with me to avoid potential heat damage to multiple pens. I bought a Frio case for our last trip and it seems neat, but I didn't end up needing it and we were there in September. I keep plenty of spare pens in the fridge in the room, and did well with my in use pens in their neoprene case in my pocket or backpack.

Good luck, enjoy your trip, and be reassured that she can enjoy the wonderful food and treats at WDW despite being diabetic. With patience and testing, it will be fine for everybody.

 

[jakeybake]

My DD11 was just diagnosed 4 weeks ago. I know what you are going through. We are also going in August. Right now my DW and I feel like we are running on fumes and at times in a dream. I'm looking forward to the day when this all becomes a bit routine. We have been told its coming but we just can't imagine it.

I wish you all the luck and comfort in the world and feel free to PM if you ever need to vent/chat etc.

Jay

 

[anorman]

My DD11 was just diagnosed 4 weeks ago. I know what you are going through. We are also going in August. Right now my DW and I feel like we are running on fumes and at times in a dream. I'm looking forward to the day when this all becomes a bit routine. We have been told its coming but we just can't imagine it.

I wish you all the luck and comfort in the world and feel free to PM if you ever need to vent/chat etc.

Jay

We were like that too at first. It does become more routine after a few months and carb counting becomes almost second nature......life has become a series of continuous math problems!

The advice offered here on DISboards makes me feel a little better about Disney and type 1 diabetes. The thing I am taking most to heart is to test, test, test!

For those of you with experience with T1D in the Florida heat, do you think that a GAC is necessary? Will the heat have that much of an effect on her levels? Or is it just that we can't risk her being in line for an extended period of time? I hadn't even considered one of these but perhaps it might be a good idea to have in case we absolutely needed it.

Also, does anyone have any ideas about a pocket sized book for carb counting that would be easy to tote around? Something that would include carbs plus fibre information would be ideal.

 

[jakeybake]

We were like that too at first. It does become more routine after a few months and carb counting becomes almost second nature......life has become a series of continuous math problems!

The advice offered here on DISboards makes me feel a little better about Disney and type 1 diabetes. The thing I am taking most to heart is to test, test, test!

For those of you with experience with T1D in the Florida heat, do you think that a GAC is necessary? Will the heat have that much of an effect on her levels? Or is it just that we can't risk her being in line for an extended period of time? I hadn't even considered one of these but perhaps it might be a good idea to have in case we absolutely needed it.

Also, does anyone have any ideas about a pocket sized book for carb counting that would be easy to tote around? Something that would include carbs plus fibre information would be ideal.

Not sure if you have a phone that supports Apps but we have the Calorie King App on our iPhones and it is a life saver!!

Thanks for the encouraging words!

Jay

 

[anorman]

Not sure if you have a phone that supports Apps but we have the Calorie King App on our iPhones and it is a life saver!!

Jay

We do have an android but the problem is we live in Canada and the data roaming fees are astronomical when we travel outside the country. This is why the book would probably work better for us.