Type 1 Diabetes
- Thread starter RoseMom
- Start date
JFDIS
Mouseketeer
- Joined
- Jul 28, 2020
First off, my husband has had T1 DM for 23 years and he is incredibly healthy and lives a fun life. We go to Disney about once a month, either 1-3 days at a time. My number one tip is to pack a cooler. You can bring all the snacks/ drinks you’d like into the parks. Even if we don’t have a cooler we put a few cans of Coke in our bag for lows. Drinks in the parks are expensive and now with social distancing you may have to wait in line even to get into a gift shop to get something. Also, every park has a first aid center and they are always super happy to help with anything you may need. We always bring a syringe too just in case there are any problems with his pump. I don’t know if she has a cgm too, if so there are these awesome patches on Amazon that are perfect for the pool or sweating a lot. “SIMPATCH adhesive patch”.
JFDIS
Mouseketeer
- Joined
- Jul 28, 2020
You can always ask about dietary info (carbs/ sugar) at restaurants and quick service. Disney is known for being incredibly helpful with dietary needs. My friends son has an insane amount of food allergies and anytime they go to Orlando they go out of their way to visit Disney resort restaurants bc they are so knowledgeable
Disney was our first vacation after DDs diagnosis with type 1 as well. Since then we have visited multiple times and taken many other trips. Like everything else with type 1, it just takes more planning and preparation!
A few tips:
-pick a good park bag. I like a crossbody with lots of compartments, but a backpack works too. We used to be waist pack only park-goers but you definitely need a little more bag space.
-take extra supplies into the park each day (but not too many!) We take insulin and pump change supplies for one change, along with a good supply of glucose tabs and snacks. You can always buy more candy or juice if you run out of sugar, so don't haul around too much. We do bring lots of extra insulin and pump supplies to keep in the hotel but don't carry too much around with us daily. Also pack your other extras to have in the room-glucagon, keto stix, extra adhesive and remover, etc. We use a red duffell bag (old Land's end diaper bag) as our travel medical bag. It opens up wide so we can use it as a staging area for all her stuff.
-Disney restaurants don't provide carb counts, so you just have to guess. On our first trip 5 months after diagnosis, that was daunting, so we brought easy lunches into the parks with us. Now that we have been doing this for a while, we eat mostly counter service. There are lots of great choices available that are lower carb and healthy.
-The excitement and exertion of a full day in the parks can lead to lows, so DD usually uses temporary basals on busy days. Of course, the change of diet , etc, can lead to highs as well, so you just never know what might happen (unfortunately isn't that what life with type 1 is usally like
)
I'm happy to answer specific questions you might have--DD was diagnosed at 12 and is 17 now. She is super active, loves to travel and overall doesn't let type 1 slow her down. It is definitely a challenge, though, and I love to encourage and support other parents who are going through the same thing!
A few tips:
-pick a good park bag. I like a crossbody with lots of compartments, but a backpack works too. We used to be waist pack only park-goers but you definitely need a little more bag space.
-take extra supplies into the park each day (but not too many!) We take insulin and pump change supplies for one change, along with a good supply of glucose tabs and snacks. You can always buy more candy or juice if you run out of sugar, so don't haul around too much. We do bring lots of extra insulin and pump supplies to keep in the hotel but don't carry too much around with us daily. Also pack your other extras to have in the room-glucagon, keto stix, extra adhesive and remover, etc. We use a red duffell bag (old Land's end diaper bag) as our travel medical bag. It opens up wide so we can use it as a staging area for all her stuff.
-Disney restaurants don't provide carb counts, so you just have to guess. On our first trip 5 months after diagnosis, that was daunting, so we brought easy lunches into the parks with us. Now that we have been doing this for a while, we eat mostly counter service. There are lots of great choices available that are lower carb and healthy.
-The excitement and exertion of a full day in the parks can lead to lows, so DD usually uses temporary basals on busy days. Of course, the change of diet , etc, can lead to highs as well, so you just never know what might happen (unfortunately isn't that what life with type 1 is usally like
)I'm happy to answer specific questions you might have--DD was diagnosed at 12 and is 17 now. She is super active, loves to travel and overall doesn't let type 1 slow her down. It is definitely a challenge, though, and I love to encourage and support other parents who are going through the same thing!
Unfortunately Disney will not give out carb counts at any of their restaurants. Allergies they are very good with as the info is easily supplied, but as their suppliers for foods change all the time and the count could change daily.
gap2368
DIS Veteran
- Joined
- Feb 27, 2015
Bring extra of everything test strips insulin things for lows
If she has a CGM Do not try any new tape or patches being at disney is not the place to find out it did not stick like you thought or that she has an allergy to it try it at home first
if still on MDI I find frio bags to be a good way to keep insulin cool you can get them for between $20-$25 and they are reusable
Talk to her dr about all the extra walking see if they suggest lowing Basel/ blous rate
test more then you think you need ( if on a cgm look at the CGM) more often then you think you need so that you know how her body reacts to being at disney I some times go low sometimes go hight
do not trust the small fridge in the hotel room I have frozen more insulin then I can to say in them.
like the PP said disney will not give you the carb count of food I find the app calorie king a good one to get the idea of carb count and remember sugar for is not carb free
something not quite disney related but close every year over the summer there is a big and I mean BIG conference at disney conolondo(SP?) spring hotel around the 4th of July called friends for life it is amazing place to learn and be around other T1D they do offer scholarships if you can not afford to go.
let me know if you have any question I go to disney a lot
If she has a CGM Do not try any new tape or patches being at disney is not the place to find out it did not stick like you thought or that she has an allergy to it try it at home first
if still on MDI I find frio bags to be a good way to keep insulin cool you can get them for between $20-$25 and they are reusable
Talk to her dr about all the extra walking see if they suggest lowing Basel/ blous rate
test more then you think you need ( if on a cgm look at the CGM) more often then you think you need so that you know how her body reacts to being at disney I some times go low sometimes go hight
do not trust the small fridge in the hotel room I have frozen more insulin then I can to say in them.
like the PP said disney will not give you the carb count of food I find the app calorie king a good one to get the idea of carb count and remember sugar for is not carb free
something not quite disney related but close every year over the summer there is a big and I mean BIG conference at disney conolondo(SP?) spring hotel around the 4th of July called friends for life it is amazing place to learn and be around other T1D they do offer scholarships if you can not afford to go.
let me know if you have any question I go to disney a lot
Last edited:
Selket
Been there - done that
- Joined
- Feb 28, 2000
One of my sons was diagnosed with type 1 when he was 26 months old and is a college student now. We have been going to WDW since his diagnosis. He also has some other health issues (like severe food allergies for one). He has been on a pump since he was 2 years old and a CGMS since they became widely available. I highly recommend looking into both if you have not yet. Those two items will make your child's life better - not just their Disney trip - in my opinion. Everything is so much easier.
Here is a link to the Children With Diabetes Friends for Life conferences mentioned above: https://childrenwithdiabetes.com/conferences/future-friends-for-life-conferences/
They hope to hold one in person in July at Coronado in Orlando as usual but of course it may not be possible this summer. I HIGHLY recommend checking out their website and going to one of their family friendly all ages conferences.
You've gotten great advice. I suggest allowing your child to eat as normally as possible while there and learn to bolus for desserts and "vacation foods" if you can. I know it takes awhile to learn how to cope with this disease but we all need a Dole Whip now and then
I suggest following a good trip plan to minimize your wait times. Of course right now things are different with covid but pre-covid we would say to arrive at rope drop/early, use EMH perhaps, etc. The special ticketed events also helped sometimes to allow for a lot of rides without a lot of waiting...if you can afford these and they start to offer them again. My son has also used a DAS at times and if you have questions about that please PM me. However the key to a good trip is taking advantage of the least crowded times to do the most popular attractions whenever possible.
If you are going when the water parks are open and you have questions about that - please let me know. They are a whole other beast lol.
I also gave my son one of our old cell phones to use so we could always get in touch with him and him with us if he got separated or there were any issues. This was for all the time, not especially for Disney, and it worked well for us. These days with the CGM system like Dexcom (not sure about others) you can also set up an app that would send her blood sugar readings to your phone and alert if she is high/low, etc. This is also great for having at night to alert you if she drops critically low and needs some juice, etc. to correct a low.
ttintagel
DIS Veteran
- Joined
- Nov 28, 2011
All good advice above! If I could underline only one thing, it would be testing more often while in the parks. I have found that the symptoms of low or high BG are very easy to confuse with the normal fatigue, heat, overexcitement, confusion, and overstimulation that are normal to experience on a Disney vacation.
Lou'sMommy
Wishing to be at Epcot!
- Joined
- Feb 4, 2003
Lots of good advice here. Our daughter was diagnosed at age 7 and is now 16. She's doing great and so will your daughter! Disney was also our first vacation after her diagnosis, about three weeks after diagnosis. It was helpful to us to look over restaurant menus ahead of time so that we could somewhat pre-plan her meals - especially when she was first diagnosed. That allowed us to have a bit more time to figure out carb counts instead of trying to figure them out while ordering and eating at the parks.
I second the suggestion to get a Frio wallet. We live in the south and use one for her insulin anytime we are going to be outdoors in warm weather. They have worked very well for us in the parks even for very long days. Do be careful of hotel room fridges for storing insulin. We have had insulin freeze in them before which ruins the insulin. These days we just leave our extra insulin in the room and not in the hotel room fridge.
Also, do be sure to pack plenty of whatever candy or glucose tabs she likes for handling unexpected lows. We have found that the extreme amount of walking we do at Disney can mean more lows than usual if we don't adjust. BTW, our daughter really likes Smarties to handle lows. Because they are made of dextrose their sugar is absorbed very quickly by the body - and, for her, they taste a lot better than glucose tablets. Each roll is about 6 carbs of quick sugar.
Hope you have a wonderful time at the parks! I'm sure it will all go well.
I second the suggestion to get a Frio wallet. We live in the south and use one for her insulin anytime we are going to be outdoors in warm weather. They have worked very well for us in the parks even for very long days. Do be careful of hotel room fridges for storing insulin. We have had insulin freeze in them before which ruins the insulin. These days we just leave our extra insulin in the room and not in the hotel room fridge.
Also, do be sure to pack plenty of whatever candy or glucose tabs she likes for handling unexpected lows. We have found that the extreme amount of walking we do at Disney can mean more lows than usual if we don't adjust. BTW, our daughter really likes Smarties to handle lows. Because they are made of dextrose their sugar is absorbed very quickly by the body - and, for her, they taste a lot better than glucose tablets. Each roll is about 6 carbs of quick sugar.
Hope you have a wonderful time at the parks! I'm sure it will all go well.
In general they really don't want people to know how many carbs are in most of the food and for most people, it won't matter as on vacation they will be substantially more active and burn them off. The problem is when there are people with diabetes and other medical problems that need to watch the carb counts.
- Joined
- Oct 27, 2011
Unless it’s a pre-package item, not something made onsite, I don’t completely trust carb counts put out by a restaurant (anywhere). That food on your plate isn’t specifically tested so it’s all estimates, especially at restaurants that tend to serve larger portions than recommended. Suppliers and product brands change, which impacts carbs. I’ve seen counts for “pasta” range from 35g to 79g.
- Joined
- Aug 23, 1999
That’s the answer I’ve heard for why they don’t give carb counts.
Prepackaged items are made and portioned to consistent standards and those items fo have nutrition labels.
Even though restaurants follow recipes for the foods they make, there is still room for a lot of variation - a particular chef may be a bit more ‘heavy handed’ with an ingredient or the CM portioning it out may give a larger or smaller portion.
buffettgirl
The whole tag thing, so 1990's internet.
- Joined
- Dec 26, 2008
EDIT just realized this was a zombie thread from January.
In addition to what everyone else said:
(in no particular order of importance)
sandwich bags to keep pumps/meters/ etc dry. Depending on what your daughter is using. My son used to wear a spi-belt to hold his pump, but he'd first wrap the pump in a few sandwich bags. It helped make sure his pump stayed dry and sweat free. And everything else important also went in zippy bags just to be safe.
Carry your own glucose at all times. Carry glucagon (FWIW, my son has had D since 2005 and we've never used glucagon, so don't be afraid of it, but learn how to use it)
Frio bags are great.
Hotel fridges are notoriously bad for insulin, freezing insulin is generally what happens, so we tend to just not use them and just keep the insulin out.
Granola bars are awesome and portable. And Mickey Bars are the absolute perfect end of the night snack - fat + sugar make for a good night sleep.
Basal rates may need to be adjusted and watch out for "adrenaline highs"- blood sugar spikes at excitement but then quickly falls again. Don't treat those. Ride them out.
Lines are a great down time for resting and testing and treating. Use them to your advantage. don't be worried about testing wherever you feel like it, it's nobody's business. Same with doing shots if you're doing them.
I do know that on our very first early trips when our son was little, we did use a portable tiny scale to help us better figure carb counts, but he was extremely sensitive to insulin. Don't bother telling the restaurants about diabetes. Like others said, they don't give carb counts and they're a bit clueless. There is a great story somewhere in this forum about a special desert that was prepared for a little girl. All fruit. Because... apparently in someone's mind, fruit didn't have carbs.
And mostly, have fun. It will be great!
In addition to what everyone else said:
(in no particular order of importance)
sandwich bags to keep pumps/meters/ etc dry. Depending on what your daughter is using. My son used to wear a spi-belt to hold his pump, but he'd first wrap the pump in a few sandwich bags. It helped make sure his pump stayed dry and sweat free. And everything else important also went in zippy bags just to be safe.
Carry your own glucose at all times. Carry glucagon (FWIW, my son has had D since 2005 and we've never used glucagon, so don't be afraid of it, but learn how to use it)
Frio bags are great.
Hotel fridges are notoriously bad for insulin, freezing insulin is generally what happens, so we tend to just not use them and just keep the insulin out.
Granola bars are awesome and portable. And Mickey Bars are the absolute perfect end of the night snack - fat + sugar make for a good night sleep.
Basal rates may need to be adjusted and watch out for "adrenaline highs"- blood sugar spikes at excitement but then quickly falls again. Don't treat those. Ride them out.
Lines are a great down time for resting and testing and treating. Use them to your advantage. don't be worried about testing wherever you feel like it, it's nobody's business. Same with doing shots if you're doing them.
I do know that on our very first early trips when our son was little, we did use a portable tiny scale to help us better figure carb counts, but he was extremely sensitive to insulin. Don't bother telling the restaurants about diabetes. Like others said, they don't give carb counts and they're a bit clueless. There is a great story somewhere in this forum about a special desert that was prepared for a little girl. All fruit. Because... apparently in someone's mind, fruit didn't have carbs.
And mostly, have fun. It will be great!
My son was diagnosed at age 4 and he just turned 15. I remember our first Disney trip post T1D was stressful. I will be happy to share any and all tips for life in general or Disney.
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