Disney with Type 1? How do you do it?

[MindyLuvsMickey]

We will be taking our first trip as a family since my oldest son was diagnosed in Dec. 2012. We have a good system at home but have never had to think about surviving outside in the heat for multiple days at a time.

He is a very active, athletic 9 year old but he is super sensitive to the heat. His blood sugars drop quickly, particularly when overheated. We always carry quick snacks and fast acting carbs that we will replenish in a regular basis.

How do those with experience cope with the heat? We keep Chilly Pads and misters in his soccer bag and will be bringing them along for the trip.

We are planning a trip in January for Marathon Weekend, as well as cooler temps to help avoid some of those heat-related issues.

 

[dsneygirl]

My 2 year old is T1 and we have done 2 trips and a cruise since Dx. You will get a variety of answers as every kid seems to be different in how they react.

We were really liberal with food as we found it was low much more than he was high. So treats like fries, ice cream were not an issue. We carried all supplies with us at all times in a backpack.

We only had 1 incident when he crashed fast in the middle of the Gorilla trail at AK. He was sobbing so we raced back to the stroller, got juice and some a/c until things had settled down.

Some families will get a DAS we have not felt the need at this point. We used Fp+ and were there at a very slow but hot time (Sept).

Housekeeping brought a sharps container for our room. The restrooms also had sharps disposal but I found most were full

We also tested A LOT! at least 10-12x a day. Now he has a CGM so our next trip will be a little different.

 

[jcano]

If you're going in January, you shouldn't
have many heat related issues. We do usually take our mister fan from previous years in case of a hot day.
One thing we learned quickly. Test, test and test. She has always been on a pump when we have gone, so we would test her bg almost
hourly and make adjustments as needed. When she goes high, it can take awhile for the insulin to kick in and meanwhile she feels lousy, so we watch the bg closely. Next time she'll be on injections, so we probably won't
test as much for fear of stacking.
We have not found the need for a GAC / DAS. We typically go during lower crowd times and haven't seen the need.

Have fun!

 

[happinessisdisney]

Our DD was diagnosed right after a much awaited Disneyland trip in 2011. We Have done 3 trips to Disney World and have done 3 cruises since then. Testing is very much the key as others have mentioned. We have however gotten the old GAC card and the new DAS card as she is very sensative to the temperature and all the walking. We used it as needed with the old fast pass system. With the new Fastpass+ it made it a bit more challenging. The new DAS card was the perfect answer for us.

Carb counts at Disney are anything but easy. I have spoken with chefs and food supervisors at both the World and on DCL. All have said they do not keep lists of carb counts. Error on the higher side, or try to do the dual wave or square wave if on the pump, and again test frequently! The fast food locations often have books behind the counter with individual ingrediant labels to give you a "guesstimate".

Drink lots of water and take breaks in the middle of the day during the hottest times of the day. (That is why I like the new DAS card, you can get a return time for a ride and take a snack, bathroom or cooling break while you wait for your time to go back to the ride.

 

[Krs1300]

I don't know what your plans are for your trip or if your son is on a pump or MDI, but I will say this...

From my personal experience as a T1D (I'm on the OmniPod), I have no problems in the regular parks because I'm testing all the time and I have a CGM so it obviously alerts me. There is also food/drinks EVERYWHERE... and in a pinch, I'll just steal from my 2 year old. That being said... the water parks is a WHOLE DIFFERENT story for me. (Gosh now I just realized you said you are going in January... oh well, I will give my story anyway. ) Swimming + walking + stairs to get up to the slides (you won't believe how many there are!!) + NOT testing because I'm away from my meter and CGM = DISASTER that takes a solid 2 days to recover from. I've had some of my most gnarley lows after trips to a waterpark! So... even though you are likely not doing that in January... I hope that helps for future reference!

 

[MindyLuvsMickey]

He is MDI now. He has no desire to pump. He is honeymooning pretty good now and we find that he is pretty sensitive to exercise. He will have lows even when he's not exercising. I think he'd probably welcome all of the extra snacks.

I was wondering if Disney had a nice grasp on the carb counts but it sounds like not so much. He is not a very adventurous eater and will likely stick to thing that we can easily estimate.

 

[dsneygirl]

He is MDI now. He has no desire to pump. He is honeymooning pretty good now and we find that he is pretty sensitive to exercise. He will have lows even when he's not exercising. I think he'd probably welcome all of the extra snacks.

I was wondering if Disney had a nice grasp on the carb counts but it sounds like not so much. He is not a very adventurous eater and will likely stick to thing that we can easily estimate.

I knew from reading here and other places I wouldn't get carb counts so I never even asked. Never notated we had a T1 in our group because it didn't matter. I stuck to what I know or what I could weigh (pasta, rolls, fruit etc).

Like I know a McDs chicken nugget is 4 or 5g so I figured WDW's is probably similar. Fries I can weigh. A pain but I carried my scale everywhere. This worked well on the cruise too.

 

[ttintagel]

Test, test, test! I basically test whenever I have an opportune moment. It may be harder to get a nine-year-old to do it, but the symptoms of a low or high are so easy to mistake for the normal effects of the fatigue, overstimulation, excitement, hunger, thirst, motion sickness, varying temperatures, etc. that you encounter in a day at the parks. Also, you’re getting lots more exercise (six miles a day of walking is the low ballpark) and carb/fat content estimates can be really hard. I easily test twice as often as usual at WDW.
Let’s see… what are the other usual things?

--Stay hydrated. As silly as it sounds, it’s SO easy to forget. Keep drinking even when you don’t feel thirsty.

--If you’re at a Disney resort, get a sharps container from Mousekeeping. Some of the public restrooms in the parks have them now, too.

--Frio wallets are good for keeping insulin cool. The First Aid stations in the parks will keep some in their fridges if you need them to.

--The inspectors at bag check at the park gates have asked me what my OmniPod PDM case is, but they’ve never asked me to open it.

--At the advice of my doctor, I don’t take a correction for a high BG right before getting on a ride, because I don’t want to risk a low while I’m stuck in there. Your doctor’s advice supersedes mine if it’s different.

--My favorite snacks to carry in the park are dried fruit, granola, and PB&J. I also usually have a bottle of juice in addition to the dextrose gel for low BG.

--Keep Ziploc bags in your park bag to slip BG monitors, etc. into on rides where you may get wet. Don’t forget the spare batteries!

--I pack twice as many supplies as I’ll need, plus emergency prescriptions.

--I seem to be a bit of a weirdo in the Type 1 community, because heat doesn’t seem to affect my BG’s.

 

[buffettgirl]

I'll ditto what everyone else has said. We are usually at Disney in the summer and while my son also seems to drop really quickly with the heat, we've never had much of an issue. We just carry everything with us, use lines as a way to just relax and cool down. We treat lows in line if we have to, but by and large, the food is sooooo fatty that he ends up running high a lot. We also tend to slightly under dose for breakfast and lunch, knowing that by mid afternoon he's going to be plummeting when we're back at the hotel swimming. Then we try to dose accurately for dinner. And nighttimes we just play by ear. IF he's been low a lot during the day, I generally know he'll be low at night. If he's running high during the day, nights will generally be fine.

The biggest thing - just test and test and test. Test more than you think you should, even if it's every hour. If you test a lot, you'll be able to ward off most problems. I would make sure you're got a good grasp on how long insulin lasts in him and really use that information to help you make good decisions regarding treating/dosing. Like if he's eaten at 12 and it's 3:00 and he's 78, and you know his insulin lasts 4 hours, that means he's still got more insulin to work, which is going to pull him down lower. On the other hand, if he's 300, then you know you're probably safe to correct.

Also, be aware that excitement can actually make the kids go high. Adrenaline can make them go high. You have to be careful correcting those as they usually end up crashing back to normal later, on their own.

Isn't diabetes fun?? LOL. But you'll do great. It's important to not let it rule your vacation. Carbs are the same as at home. Restaurant food is always extra fatty. You'll do great.

 

[frkymcky]

Our DD was on injections the last time we were in WDW. I did not find it any more difficult to care for her there than at home while on summer break at camp. That said, it had been 2 years since her diagnosis so I was a bit more comfortable with how she responds to exercise, heat, etc.. I do carry collapsible measuring cups which helps me measure pasta, rice, etc. I carry my Calorie King book and use apps on my phone to help guesstimate some foods. When I order ice cream for her, I ask for an extra cup and just use my measuring cups to figure out how much she is having. She is a chocolate kind of girl, so its always chocolate ice cream no toppings...i have a good idea that a 1/2 cup of ice cream is about 17 carbs..some brands are more but its a good guesstimate (IMO). I am sure you will have an "idea" of what your child eats and what the carb counts are...if you see numbers are running low while in WDW you can cut back a bit on the insulin...maybe a 1/2 unit or so. You will both be fine! Enjoy your trip!

 

[amykathleen2005]

My husband loves his Dexcom continuous glucose monitor. It is an amazing tool for any diabetic. It measures your BG all of the time and alarms when it goes too high and too low. It also shows a graph of the sugars and the trends up and down. It is an insertion of a sensor for one week (we can actually get several weeks out of some of the sensors) and two calibrating finger sticks a day. That is it. They are amazingly accurate. Would your insurance cover it?

 

[buffettgirl]

My husband loves his Dexcom continuous glucose monitor. It is an amazing tool for any diabetic. It measures your BG all of the time and alarms when it goes too high and too low. It also shows a graph of the sugars and the trends up and down. It is an insertion of a sensor for one week (we can actually get several weeks out of some of the sensors) and two calibrating finger sticks a day. That is it. They are amazingly accurate. Would your insurance cover it?

hands down, the G4 has been a game changer for us. My son likes it, but I freaking LOVE it. He's had diabetes since 2005. I've slept better in the past year than I did the 7 years prior. We generally get about 2 weeks out of each sensor . We still finger stick quite a bit, but not nearly as much as we were before.

 

[kt_mom]

DD was just diagnosed in September and we went to Disney in December. I was nervous at first but things went pretty smoothly. We had pretty warm weather most of the week but she ran high constantly. I think it was a combination of the excitement and the higher fat foods she was eating.

The carb counting was harder because you had to guess a lot, but some of the prepackaged stuff does have carb counts. To help at buffets we thought ahead to what she normally likes and tried to look stuff up ahead of time. Like waffles and different fruits and made notes in my phone so we could calculate a little easier/faster. We did the insulin by the plate at the buffets rather than try to guestimate her whole meal when we sat down.

DD was still kind of emotional on that trip and a waiter noticed her insulin pen on the table at Ohana. He offered to get her the sugar free dessert and she kind of bit his head off. She's in a better place with things now and I hope our October trip will be even smoother.

It was pretty easy to manage the D on that trip and hopefuly even easier next time since we have a dexcom now. We really do love it.

 

[bopper]

Also make sure that the heat doesn't affect your diabetic supplies. One time we were in Hawaii and my type 1 DH tested and it showed his BG as High. He took some insulin, and it wasn't coming down...yadda yadda yadda he had a super low episode had to go to the hospital because we didn't know it was low as it was showing in the 300's but it was due to the strips being affected by heat we think.

 

[jakeybake]

We go each August, including last August, 7 months after my 12 year old daughter's initial T1D diagnosis. We were a bit worried but it worked out great. At the time my daughter was doing injections (she is now on the OmniPod which we absolutely love) and other than one real low (46 by the pool at the Beach Club) everything felt like it usually went at home. As others have said we did test a ton and were quite cautious at the parks by making sure we covered everything as close as possible (as others have stated the restaurants couldn't give you carb counts) and always had her "Betes Bag" (as she calls it) with us wherever we went.

Funny story.... We did the water parks and would always get two of the plastic bags from the gift stores there. We would put her "Betes Bag" in the bags and tie them up. Then when we would go in to Castaway Creek or Cross Country Creek (the lazy rivers there) we would grab one of the extra toddler floats (the small floats that don't have a hole in the middle like the adult ones) and we would put the bag on there and hold onto the handle of it as it floated next to us while we floated around. That way we always had it with us and we didn't have to worry about it getting wet from the water that splashes around or down on you. Just had to make sure it didn't flip off, but we held onto that thing as carefully as possible. The river winds around the entire park so we weren't sure how far away from the bag we would be so we kept it with us!

I'm sure we looked liked a bunch of crazy whack jobs but it worked for us, which is all that matters.

Best of luck on your trip and hope and prayers for a cure in the very near future!!!!

Jay

 

[JenniBugInPink]

Everyone has given you excellent advice. I don't have anything to add, as my husband is 59 and has little in common with an active young man such as yours! He has had Type I since he was 4, though, and back when he was the age of some of the kids mentioned in these posts, there was no good way to test blood sugars in a doctor's office, and certainly not at home! Then we had the advent of sticks to use with urine, then finally blood, and eventually came the meter on which everyone now depends.

I wander down memory lane here to point out that even with the horrible control that my husband must have had back when there was no way to measure, my husband is now going on 60 and has few DM issues other than having required some laser surgery for vision issues years ago (he's fine now), and he had a stroke (don't panic) about 5 years ago due to what appears to have been an aneurysm. There is a *slightly* higher risk of this type of stroke in diabetic patients, but it may also have been due to a congential issue. He had NO sequelae. Um, rephrase (I'm an RN and I work in research)...He didn't have any long term effects from the stroke. He is MUCH healthier than his wife.

I hope for all of your kids that they have great, long lives thanks to the many medical advances that have been made. And I'll keep on working in research - not all related to DM, but I do work in ophthalmology, so ya' never know.

 

[JeJecm]

Can I get a DAC IF I HAVE TYPE 1 diabetes? There are big problems with my blood sugar dropping if I get hot, tired, standing in lines. I don't want to abuse the system but I don't want to spoil our family's fun if I'm having blood sugar issues.

 

[2tinkerbell]

I've never used the GAC or now the DAS for my Type 1 Diabetes. I just make sure that I manage my diabetes like I do every day. I have been known to check my blood sugar levels in line (no one even knew what I was doing) and make adjustments as necessary. That is my experience.

 

[lanejudy]

You may certainly discuss your needs with Guest Relations and request a DAS. Only they can determine if you will qualify.

Some things to think about:
You will get hot and tired anywhere, not just in lines. The DAS doesn't let you skip lines, just allows you to wait elsewhere. Most attraction queues are either covered or indoors. Choosing a cooler time of year to visit may be beneficial if the heat and humidity are particularly bothersome for you.

Recognize that you likely will be affected in ways that you don't typically deal with. Plan to test more frequently than usual. Stay hydrated - free ice water is available on request at any CS location. Bring snacks with you.

As PP mentioned, people can and do test (and treat) blood sugar in lines. Most guests are busy chatting with their own party and won't even be aware of what you are doing. There are Sharps containers in all (or nearly all) restrooms throughout WDW.

I'd suggest doing some planning so you know what to expect. Take extra supplies. Carry your emergency glucose tabs with you (or whatever you use). Make sure your family is aware of the symptoms of a low. Speak with Guest Relations if you think that might help.

Enjoy your vacation!

 

[SueM in MN]

I'm going to refer you to the discussion about diabetes on this thread:
http://www.disboards.com/showthread.php?t=3263107

DAS (Disability Access Service) Cards are used for disabilities and the condition that causes the disability is not pertinent. Diabetes is not a disability; it is a condition that can cause disability.
The majority of people with diabetes posting on this board quickly test and treat if needed in lines and there are CMs with type 1 diabetes working in the heat.
Others do have more issues, so just asking for a DAS because you have diabetes doesn't tell the CMs what level of disability you have. Your task is to explain your needs related to your disability.

I'm actually going to combine this thread with the other thread.