Disneyland and Diabetes?

[DisSurfer878]

Hi all,
We are navigating a very new chapter in our lives. My dh was recently diagnosed with diabetes and we are undergoing genetic testing for more answers. He has started new medications and is wearing a CGM. I know this group has a lot of different folks on here and was wondering what your best tips are for navigating the parks with diabetes. We're not even sure if his sensor can go through the x-ray scanner? We've always brought water but is juice okay too? We have heard there can be issues with temperature regulation, but again, brand new to this and haven't been in extreme heat yet. Generally, we are a bit all over the place right now and wondering how this impacts our park experience and any tips veterans have for keeping DH safe and healthy when he visits now. Also, any info on getting carb counts on food would be helpful. Thanks everyone!

 

[gap2368]

Bring extra of what ever you think you need test or check BG more often

 

[OhDannyBoy]

We're not even sure if his sensor can go through the x-ray scanner?

My wife is a type 1 diabetic and wears an omni pod and has never had an issue with a scanner or anything. never had any issue with syringes either.
She never brings juice, she prefers candy. Easier to carry and dose.
Make sure he's hydrated, checks his blood often, and sit down when ever he needs to.

 

[DisSurfer878]

My wife is a type 1 diabetic and wears an omni pod and has never had an issue with a scanner or anything. never had any issue with syringes either.
She never brings juice, she prefers candy. Easier to carry and dose.
Make sure he's hydrated, checks his blood often, and sit down when ever he needs to.

I'm not familiar with an omnipod but his is called a Libre?

 

[DisSurfer878]

Bring extra of what ever you think you need test or check leave more often

What do you mean leave more often? Like leave the park?

 

[gap2368]

What do you mean leave more often? Like leave the park?

Check his number more often.

 

[Lewisc]

Libre is a CGM (continuous glucose meter) Dexcom is another popular brand Medtronics also makes CGM. Omnipod is an insulin pump.

No problem going through metal detectors. It is advised to skip the back scatter scanners used in airports and even some theme parks. Ask for alternate screening.

Walking tends to reduce your need for insulin. Have whatever you use to treat a low. Glucose tabs for example. 8 oz of sugar based soda has around 20g of sugar, double check. That can work well if you have a low.

Old school is to bring a lot of test strips. New school is to check your CGM often. Make sure your alarms are set loud enough to hear.

 

[OhDannyBoy]

I'm not familiar with an omnipod but his is called a Libre?

I'd imagine it's more or less the same in terms of a scanner.

 

[Minniebee]

I'm not familiar with an omnipod but his is called a Libre?

Omnipod is a brand of insulin pump. Libre is a CGM.

My DD has type 1 and while we haven't visited DL, we are frequent WDW visitors. Like everything else with diabetes, a little planning and preparation is needed, but she is able to enjoy long, full park days.
A few tips:
DD goes through the metal detectors with her Omnipod and dexcom, no problem. Occasionally they will pull her aside for a bag inspection, but the security officers are accustomed to all the medical equipment.
We carry glucose tabs instead of juice, much easier to carry.
There are lots of healthy meal options at quick service and table service. Disney restaurants do not provide carb counts, so you will have to estimate. When she was newly diagnosed and we were new to carb counting we carried lunches in to make it easier.
A Frio pouch is great to keep insulin cool, you can fit pens or vials in the standard size.
DD does tend to get a few more lows in the parks, just from the level of activity. We adjust her basal rates and make sure to keep a close eye on her CGM. She usually "underdoses" her meal insulin a bit while in the parks, especially if she has been running on the low side that day.
LIke I said, more preparation is needed, but you should still be able to enjoy the parks just like you always have!

 

[Selket]

If you search this forum for diabetes or type 1 diabetes you can find many posts. One of my kids was dx'd with type 1 hat 26 months old and he's a young adult now. We still go to WDW often. He has a t-slim pump and Dexcom and prefers to not go through the scanner but have alternate scanning at the airports or wherever. I just suggest whatever device your DH has, he check with that company and go with their recommendation on scanning.

Once he is used to counting carbs and giving insulin he can eat more freely (normally?) and cover the carbs with insulin. I highly recommend looking at insulin pumps because they give way more flexibility with eating (want a mickey bar? bolus for the carbs...more or less). My son eats what I'd consider normally for a young college age adult. You do need some practice carb counting and seeing how exercise, etc. affects blood sugars before you tackle a buffet of course. Get used to weighing out portion sizes at home so you learn to eyeball what 50 carbs of pasta look like, etc.

It's unusual to be diagnosed as an adult but I've met several who were. I highly suggest checking out Children with Diabetes - they are not just for kids - and they have a big conference every summer at Disney (at Coronado) with a few days of panels, discussions meant for adults and kids and their families. Unfortunately you just missed the one in July: https://childrenwithdiabetes.com/conferences/friends-for-life-orlando-2021/ They have others on deck however.

When is your next trip? is it usually to DL or WDW?

 

[lanejudy]

My DH uses a Freestyle Libre and has no problems with scanners. If you/he have any concerns you may request alternate screening.

No issues bringing supplies or foods into the parks. Just no glass (use plastic juice bottles). Instead of carrying beverages that get heavy, we carry hard candies and granola bars or such.

The hot, humid temperatures in FL can easily cause dehydration. (Oops, just realized you said DL - similar recommendations anywhere really.) Drink plenty of fluids and take breaks before feeling exhausted. As PP suggests, bring plenty of supplies, and I recommend having a back-up manual (finger-prick) test kit. You can get a fairly cheap one with test strips at WalMart if he doesn’t have one.

 

[DisSurfer878]

If you search this forum for diabetes or type 1 diabetes you can find many posts. One of my kids was dx'd with type 1 hat 26 months old and he's a young adult now. We still go to WDW often. He has a t-slim pump and Dexcom and prefers to not go through the scanner but have alternate scanning at the airports or wherever. I just suggest whatever device your DH has, he check with that company and go with their recommendation on scanning.

Once he is used to counting carbs and giving insulin he can eat more freely (normally?) and cover the carbs with insulin. I highly recommend looking at insulin pumps because they give way more flexibility with eating (want a mickey bar? bolus for the carbs...more or less). My son eats what I'd consider normally for a young college age adult. You do need some practice carb counting and seeing how exercise, etc. affects blood sugars before you tackle a buffet of course. Get used to weighing out portion sizes at home so you learn to eyeball what 50 carbs of pasta look like, etc.

It's unusual to be diagnosed as an adult but I've met several who were. I highly suggest checking out Children with Diabetes - they are not just for kids - and they have a big conference every summer at Disney (at Coronado) with a few days of panels, discussions meant for adults and kids and their families. Unfortunately you just missed the one in July: https://childrenwithdiabetes.com/conferences/friends-for-life-orlando-2021/ They have others on deck however.

When is your next trip? is it usually to DL or WDW?

Thanks so much. Right now our next trip is in the fall, to Disneyland. We haven't rescheduled WDW yet. He actually has this super rare type (hence the late dx) called monogenic diabetes (MODY) and we don't yet know until the genetic testing comes back if he will need insulin. Right now he's on insulin stimulating medication that makes him experience a lot of lows and they are worse when he does physical activity (often accompanied by sudden onset nausea and vomiting) and his blood sugars are still pretty unstable, but better ranges (maxxing out at 240 a couple times a week, but going low multiple times daily)

 

[Lewisc]

From Dexcoms website
When wearing your G6, ask for hand-wanding or a full-body pat down and visual inspection instead of going through the Advanced Imaging Technology (AIT) body scanners (also called a milimeter wave scanner).

I called Evolv. Their machines are used at Disney. Their machines are millimeter wave scanners. To be safe they suggest asking for alternate screening.

The concern is devices like Dexcom CGM haven't been tested for interference by scanners. Some of the scanners can be set at different levels. There may be no trouble if the machine is set to normal mode but might be an issue if the machine is set to a higher level. There is also concern the effect might be cumulative. Going through once might be OK. Going through multiple times over several days might be an issue

 

[sparky68]

My wife is a type 1 diabetic and wears an omni pod and has never had an issue with a scanner or anything. never had any issue with syringes either.
She never brings juice, she prefers candy. Easier to carry and dose.
Make sure he's hydrated, checks his blood often, and sit down when ever he needs to.

And juice can spoil in the heat, or spill.

 

[sparky68]

From Dexcoms website
When wearing your G6, ask for hand-wanding or a full-body pat down and visual inspection instead of going through the Advanced Imaging Technology (AIT) body scanners (also called a milimeter wave scanner).

I called Evolv. Their machines are used at Disney. Their machines are millimeter wave scanners. To be safe they suggest asking for alternate screening.

The concern is devices like Dexcom CGM haven't been tested for interference by scanners. Some of the scanners can be set at different levels. There may be no trouble if the machine is set to normal mode but might be an issue if the machine is set to a higher level. There is also concern the effect might be cumulative. Going through once might be OK. Going through multiple times over several days might be an issue

The equipment is expensive to replace. All the metal detectors have people who can wand scan you. If you are at all concerned about the machines damaging your medical equipment don't be afraid to ask for wand scanning. They staff really doesn't want to damage someone's medical equipment.

 

[Lewisc]

Metal detectors are OK. Extra sensors shouldn't go through X Ray machines used for checked and carryon luggage. You should opt out of the body scanners. The machines where you hold your arms up and it rotates around you.

 

[Selket]

Thanks so much. Right now our next trip is in the fall, to Disneyland. We haven't rescheduled WDW yet. He actually has this super rare type (hence the late dx) called monogenic diabetes (MODY) and we don't yet know until the genetic testing comes back if he will need insulin. Right now he's on insulin stimulating medication that makes him experience a lot of lows and they are worse when he does physical activity (often accompanied by sudden onset nausea and vomiting) and his blood sugars are still pretty unstable, but better ranges (maxxing out at 240 a couple times a week, but going low multiple times daily)

I was wondering if it could be MODY - I know someone with this but II don't know which mutation. She is insulin dependent for her type. If you can ever attend one of the CWD conferences there are many adults with type 1 (and MODY type 1) who attend and it's a wealth of good info and very very helpful networking. I know MODY can be different but I have not kept up with the research and what not. You're sort of in a different situation than the typical type 1 juvenile onset that will be typically insulin dependent from the very start but you're still considered part of us type 1 people and friends of people with type 1

I'm sure my son's medical equipment and sensors and what not have gotten through a medical detector here and there over the past 18 years and nothing bad has happened.... but we still try to be careful. We've also not had him have a problem with any rides (they say avoid magnets but none of the WDW rides have been an issue...oddly PeopleMover has the most magnets I think). Just make sure the diabetes equipment is well stowed in a belt pack or something so it doesn't get lost on a ride.

 

[ttintagel]

All great advice above. The most important thing I would stress is that the symptoms of highs or lows can be super easy to confuse with the symptoms of too much heat and sun, overstimulation, and fatigue that are part and parcel of a day in the parks. And most of us, even active kids, are probably getting more exercise in a day than we’re used to.

 

[DisSurfer878]

All great advice above. The most important thing I would stress is that the symptoms of highs or lows can be super easy to confuse is all great advice above. The most important thing I would stress is that the symptoms of highs or lows can be super easy to confuse with the symptoms of too much heat and sun, overstimulation, and fatigue that are part and parcel of a day in the parks. And most of us, even active kids, are probably getting more exercise in a day than we’re used to.

This is too true, especially the fatigue and overstimulation. My DH also has ADHD, so its been incredibly challenging sorting out if its ADHD fatigue, regular person fatigue, or diabetic fatigue. Same with being overstimulated; so its good to be given the advice that heat and sun impact this too and to be more mindful as we are usually "gogogo" touring folks

 

[gap2368]

This is too true, especially the fatigue and overstimulation. My DH also has ADHD, so its been incredibly challenging sorting out if its ADHD fatigue, regular person fatigue, or diabetic fatigue. Same with being overstimulated; so its good to be given the advice that heat and sun impact this too and to be more mindful as we are usually "gogogo" touring folks

You DH sounds a lot like me I also have ADD ( I think now they just calll it ADHD) along with some other things that causes me to wonder if it is my BG or over stimulation I too used to be a go go go type person. One thing that has really helped me is taking breaks they are not long breaks just long enought to do a self check for me I forget to do the simplest of things whale at disney like drink or eat andthat can effect BG big time so it is just long enought to make sure I am not hungry or thirsty some other things I look at is if I am over stimulated by the crowds or the smell, noises from the parks are gettting to much for me as the system of both ( BG and over stimulation ) can be the same. I then decided on what I need to do witch can be anythings from gettting a drink to going back to the hotel when the crowds have been to over stimulation for me. I hope this made since