Advice for visit with new T1D diagnosis?

[Mac2008]

Thanks in advance for any suggestions!

We are very experienced Disneyland visitors traveling from out of state for a quick 2.5 day trip. However my 11 year old daughter was just diagnosed with Type I Diabetes (December) so this aspect is very new. I impulsively booked this trip yesterday thinking it would be a great getaway and an encouragement for her ("see! You can still do all these fun things! No big deal!" etc) but last night I laid awake thinking about all the things I hadn't thought about before. Basically, this is new enough that I don't know what I don't know, including what to watch out for. Does anyone have advice for first time with T1D?

- we are going end of January, so weather should be cool-ish
-my daughter is otherwise very fit and healthy
-we don't have a continuous blood glucose monitor or pump yet
-use kwikpens for insulin
-it will just be the two of us, staying on property.

Again, thanks in advance for any advice.

 

[Geemo]

Thanks in advance for any suggestions!

We are very experienced Disneyland visitors traveling from out of state for a quick 2.5 day trip. However my 11 year old daughter was just diagnosed with Type I Diabetes (December) so this aspect is very new. I impulsively booked this trip yesterday thinking it would be a great getaway and an encouragement for her ("see! You can still do all these fun things! No big deal!" etc) but last night I laid awake thinking about all the things I hadn't thought about before. Basically, this is new enough that I don't know what I don't know, including what to watch out for. Does anyone have advice for first time with T1D?

- we are going end of January, so weather should be cool-ish
-my daughter is otherwise very fit and healthy
-we don't have a continuous blood glucose monitor or pump yet
-use kwikpens for insulin
-it will just be the two of us, staying on property.

Again, thanks in advance for any advice.

There are medical-health centers in both parks for you if the need arises.
Have MD and advice nurse contact info in your cell phone.

When we had a new diagnosis, we found how important it was to have candy-sugar WITH you for a severe low drop in glucose reading.

We do not use a continuous monitor or pump. We use a similar insulin pen. And function fine day to day.

It's easy to check numbers in out of the way places before a meal of snack. Now that we do this we see others doing the same. It is no big deal. Same with the injection.

When eating out we have learned NOT to take the insulin until the food arrives or even after the meal. When we have taken it before there have been too many times the food did not come fast enough and it has caused an issue with dropping glucose levels.

We had an episode at the GCH one morning. We had a scheduled CB, thinking we would be seated and crusing the buffet at least close to that time, we took the insulin right before we checked in for the CB. Big mistake.... As we waited to be seated the insulin kicked in... When I saw the diabetic begin to crash I went and talked with the CM. They brought out pastries and a large glass of OJ to rescue him. We ended up eating at the White Water Snack Shack that morning.

There is a definite learning curve to managing diabetes and everyone is different.
BUT YOU CAN DO IT!!

Have fun in the parks

Geemo

 

[Geemo]

I travel solo often and my family wanted me to have a wearable ID. I don't like necklaces or braclets so I found ROAD iD.

I now have an ID tag on all of my shoes, in case of emergency.

ROAD iD makes it easy Shoe ID

 

[Mac2008]

There are medical-health centers in both parks for you if the need arises.
Have MD and advice nurse contact info in your cell phone.

When we had a new diagnosis, we found how important it was to have candy-sugar WITH you for a severe low drop in glucose reading.

We do not use a continuous monitor or pump. We use a similar insulin pen. And function fine day to day.

It's easy to check numbers in out of the way places before a meal of snack. Now that we do this we see others doing the same. It is no big deal. Same with the injection.

When eating out we have learned NOT to take the insulin until the food arrives or even after the meal. When we have taken it before there have been too many times the food did not come fast enough and it has caused an issue with dropping glucose levels.

We had an episode at the GCH one morning. We had a scheduled CB, thinking we would be seated and crusing the buffet at least close to that time, we took the insulin right before we checked in for the CB. Big mistake.... As we waited to be seated the insulin kicked in... When I saw the diabetic begin to crash I went and talked with the CM. They brought out pastries and a large glass of OJ to rescue him. We ended up eating at the White Water Snack Shack that morning.

There is a definite learning curve to managing diabetes and everyone is different.
BUT YOU CAN DO IT!!

Have fun in the parks

Geemo

Thank you so much Geemo -

I realize that everyone is different, but did you notice any issues with standing in long lines? A quick cruise of the internet indicated that this may be an issue which I wouldn't have thought of (standing vs sitting over a long while uses more energy, I guess?)

Do you now take it a little "easier" than you might have before or just plow ahead with plenty of extra carbs on hand?

Thanks!

 

[siren0119]

My husband is a T1D (since he was 9) and boy did I have a learning curve when we started dating! He's also a bit of a brittle diabetic on an insulin pump so we already have to watch things more closely (darn insurance won't approve the CGM yet!!!) This is how we travel:

More frequent testing (he currently tests 3-4 times a day, but it's closer to 5-6 when we are on vacation because the increased activity, foods from restaurants where we can't control carbs as well, and less sleep). We put testing supplies and any extra pump supplies in a clear ziploc bag especially if we know we have to go through a security check.

Ask for a nutritional information sheet anywhere you eat. Most will have it either in a binder/laminated sheet or a printout you can keep. It won't be perfect but it will help.

Packaged snacks that include protein and carbs. I like the P3 snack kits, but even a lunchable or some easy PB and crackers works for us. Granola bars are a good quick carb fix too. These are for the times when we catch his BG's before they tank, to help bring him up until we can get to some real food

Glucose tabs, peppermints or other candies (I aim for things that have about 15g sugar carbs) to manage lows or quick drops.

Exercise impacts not just the need for carbs as fuel but also the carb-to-insulin ratio in brittle diabetics. Where she's newly diagnosed I would err on the side of caution with extra testing and the ability to combat lows quickly. As time goes on you and she will have a better handle on how things affect her, and it will get easier!

 

[Geemo]

Thank you so much Geemo -

I realize that everyone is different, but did you notice any issues with standing in long lines? A quick cruise of the internet indicated that this may be an issue which I wouldn't have thought of (standing vs sitting over a long while uses more energy, I guess?)

Do you now take it a little "easier" than you might have before or just plow ahead with plenty of extra carbs on hand?

Thanks!

We have what we call a Crash Kit with us all the time in the cars.
It's a plastic shoe box with crackers, candy, water and juice boxes
I also carry wrapped hard candy discs in my purse, in a ziploc bag.

For DLR I have candy and water in my backpack.

"Do you now take it a little "easier" than you might have before or just plow ahead with plenty of extra carbs on hand?"

This is the learning curve....
Over time we have learned How Activities and even How Foods react with the insulin.
We go at the speed we want to and what feels good everyday.

FOR OUR SITUATION
On days where there is more constant movement we have learned to cut back on the insulin
For some reason when eating Salmon or fish we have learned to take less insulin than for other meals

You might want to get a pedometer to see how many steps you take each day.
We have fun seeing how many miles we trek each day.

See what advice your medical professionals have for your trip. And don't hesitate to call them while on the trip.
Also know where the medical centers are in the communities you are traveling to. It makes it far easier if/when an emergency arises. I make this part of the itinerary I carry for each trip where ever we go, it's on page two out of sight from the main trip but I have it if I need it.

We have been dealing with diabetes since 1990 and we know what works for us.

Geemo

 

[CastAStone]

Oooh that's me too! I am on a CGM now (they are genuinely amazing) but when I went to WDW in 2013 I did not and I was checking my BG constantly. No issues standing in lines for me, but just have snacks.

If things take a turn, personally I don't find Candy (or Glucose tabs) that helpful; sure it helps immediately but then 45 minutes later I'm getting low again. I prefer granola bars or other starchier carbs. I have gotten low many times at theme parks. I am eternally prepared and constantly checking my sugar, so it has never been a problem.

The hardest part for me is all that dining out: hoping that the carbs are actually in the ballpark of what it says in the nutrition facts, hoping the food comes out quickly, and hoping the soda is actually diet. Like I said, I check my BG often at a theme park.

Finally, I hope I'm not overstepping, but I think it's nice when parents of people with T1D try to test out various junk foods to see what they can and can't have on special occasions in the future. Vacation is a good place to do this because the junk food consumption won't become part of some routine, and at DL you'll be walking enough to help deal with any high BGs. For example I have learned through trial and error that I absolutely can never have regular soda, or juice, or beer ever again. But I can handle reasonable amounts of real ice cream or a chocolate chip cookie as long as I take the appropriate amount of insulin and eat it alongside an otherwise healthy meal. YMMV.

 

[JohnneyB]

Here are a few thoughts:

As stated above, always have sugar available. Glucose tabs and old-school Sweet Tarts work really fast. Also, they are easy to count. You want to be safe, but also don't want to over-correct if you can avoid it. In my experience, in the event of a low blood sugar, you can also stop at any place that serves drinks, explain the situation, and ask for orange juice or Sprite. I have never been turned down. You can practice quantities at home to know what a correction looks like. (i.e. 8oz. of OJ is about 27 carbs.) I sometimes do this to save my sugar supply in the event that other sugar isn't readily available.

At meal times and for snacks, try to include carbs that metabolize at fast and slow rates. It's helpful to keep carbs on a "slow-drip" throughout the day whenever active. I've found that actually having a small dessert helps to keep me level.

With this in mind, you may want to talk to your healthcare team about lowering her basal dose for the day whenever active. Sometimes this will help with lows.You may also want to ask about her insulin to carb ratio on her fast acting insulin. As siren0119 stated above, every person is different.

Managing this thing is an art and a science. There's no shortcut to testing, and you'll need to do it a lot. (Probably more than she will want to.) It's a pain at first, but you'll get there. After a while, it will become second nature. It's like learning the rules of a new game, knowing that the game is a little different for every person. Typically, whenever at the parks, I'll test 7 or more times a day. The few seconds it takes to test can help her avoid swings either way, which in the long run, will keep her safe and actually save time. I'm much less self-conscious about testing in public than I used to be. I've found that most people don't even know what I'm doing and take no notice whatsoever. One of the things that I usually do as well is to drop into a first aid center every time I pass one and do a quick test. I can't count how many times I've walked out with a free bottle of water. (No guarantees though.)

As an encouragement, I've done countless miles in the parks, been on several cruises that included snorkeling, pyramid climbing, etc., and have done a 90 mile trek in 6 days in the Himalayas. It can be done. If you can help her understand the payoff for doing these seemingly hard things up front, she'll do great. I know that you guys will have a fantastic time. Let me know if you have any questions at all.

 

[CastAStone]

Exercise impacts not just the need for carbs as fuel but also the carb-to-insulin ratio in brittle diabetics.

I think this is true for all Diabetics. Despite eating generally poorly on vacation I am consistently using about 1/3 less insulin my first few days at a theme park.

 

[CastAStone]

One more thought - If you test 2 hours after a meal and get a reading between like 95 and 115, it's probably worth testing again 15-20 minutes later to see if it's stable or falling. That's a great post-meal reading when you're lounging at home but with constant exercise it may keep dropping.

 

[Mac2008]

Oooh that's me too! I am on a CGM now (they are genuinely amazing) but when I went to WDW in 2013 I did not and I was checking my BG constantly. No issues standing in lines for me, but just have snacks.

If things take a turn, personally I don't find Candy (or Glucose tabs) that helpful; sure it helps immediately but then 45 minutes later I'm getting low again. I prefer granola bars or other starchier carbs. I have gotten low many times at theme parks. I am eternally prepared and constantly checking my sugar, so it has never been a problem.

The hardest part for me is all that dining out: hoping that the carbs are actually in the ballpark of what it says in the nutrition facts, hoping the food comes out quickly, and hoping the soda is actually diet. Like I said, I check my BG often at a theme park.

Finally, I hope I'm not overstepping, but I think it's nice when parents of people with T1D try to test out various junk foods to see what they can and can't have on special occasions in the future. Vacation is a good place to do this because the junk food consumption won't become part of some routine, and at DL you'll be walking enough to help deal with any high BGs. For example I have learned through trial and error that I absolutely can never have regular soda, or juice, or beer ever again. But I can handle reasonable amounts of real ice cream or a chocolate chip cookie as long as I take the appropriate amount of insulin and eat it alongside an otherwise healthy meal. YMMV.

Not overstepping at all! Thank you so much for sharing your experience. I really appreciate it!

 

[Mac2008]

I think this is true for all Diabetics. Despite eating generally poorly on vacation I am consistently using about 1/3 less insulin my first few days at a theme park.

So, since she is not on a pump, I'm guessing this might translate to more lows or lower readings overall....I have a call in to her clinic to talk about how we might temporarily change dosages to account for significant increase in exercise over 2+ days. Thanks for sharing this!

 

[Mac2008]

Here are a few thoughts:


With this in mind, you may want to talk to your healthcare team about lowering her basal dose for the day whenever active. Sometimes this will help with lows.You may also want to ask about her insulin to carb ratio on her fast acting insulin. As siren0119 stated above, every person is different.

Thank you - I have placed a call to her clinic to discuss this. Thank you for the advice, it makes sense to me. I really appreciate you sharing your experience!

 

[TracyGayle]

Our oldest son (of three) was diagnosed at 14 y/o and is now almost 26. So 12 years later things are a little fuzzy from those initial months immediately after his diagnosis...LOL. The 1st three months were hard with so much to learn, but our Endocrinologist & nurses at Children's in Dallas were always just a phone call away and that was very helpful! Kudos to you for encouraging your daughter that she will still be able to do all the "fun things!" Encouraging her will go a long way! We have made tons of Disney trips (DVC members for 20 years now!) before and after the diagnosis and haven't had any problems. Next trip is WDW in May for middle boy college grad trip and youngest son high school grad trip.
The advice above is great - and I loved all that Geemo had to say. I imagine your girl is still in the "honeymoon phase" and creating some insulin so that will be helpful but maybe a little confusing sometimes. As people have said, test often and maybe dial back on your ratios a little since she'll be more active, so do ask your endocrinologist about that. You can check for nutritional analysis for the restaurants, as it takes awhile to get good at estimating portions and carbs. So if you can have accurate info that might make things a little easier when administering the insulin. As for recovering from lows, our son has always used jelly beans or sour patch kids for his emergency sugar, b/c they don't melt like chocolate, and they are a fast acting sugar - which is what you want if you are suddenly going low very quickly. They are easy to count and they are easy to carry in a pocket in a small sandwich bag. I hope you enjoy your trip and just take it easy at whatever pace you feel comfortable with.

 

[buffettgirl]

There's a LOT of info on the disabilities board about Disney with diabetes, so I'd suggest reading what's posted over there too.. We've been "doing disney with diabetes" since 2005. More trips than I can count at this point.

That said, You CAN DO THIS.
-Lines are great places to wait out lows, to test BGs, to eat snacks. Take advantage of the standing still that a line provides.
- unless there are some other underlying conditions, a healthy 11 year old should have no issue with walking and standing. Just adjust insulin accordingly if your child is mostly sedentary at home.
-In your backpack have fast sugar (glucs or sweet tarts or whatever you like) , heavier carbs like granola bars, and glucagon. Always take the glucagon.
Water is readily available for free. Don't worry about that. It's the fast sugar you want.
-Our first trip after diagnosis, we brought a tiny travel scale. I'm pretty type A, so it helped me to count carbs/ calculate insulin appropriately. You might find it a pain. We also had friends who used tiny travel measuring cups. I think it's probably more important for smaller kids, because things fluctuate a lot more for them. Your diabetes may vary.
-You probably will want to cut her basal insulin by about 20%. Check with your doctor or CDE. But that's a pretty standard drop. In these cases, less is more. It's easier to fix a small high than a crashing low. Watch for lows in the middle of the night, though. That's when they'll be showing up. And watch for adrenaline highs - riding a fun ride might shoot your child high. Be really, really, really cautious about correcting those. Usually they come down on their own. Mickey Bars however are a great bed time snack. Nice combo of fat and carbs.
- make sure you check ketones often if necessary. Almost all issues with ketones can be solved if you catch it early.
- insulin is a lot more study than we've been all led to believe in the heat. But your enemy will be a too cold fridge (if you have to use one).
- don't worry about anyone looking at you while giving insulin. That's their problem. Not yours.
- bring twice as much for supplies as you think you'll need, then toss in a little extra.
- we've never had issues with security and bringing supplies into the parks. Also, carry what you need, don't use lockers or the first aid stations. They're too out of the way when you need your things NOW>

geez, I'm sure I have a million more tips, but that's about all I can think of off the top of my head.

also, for down the road, Children With Diabetes holds an annual Orlando conference / every other year at WDW. This year it's at WDW https://childrenwithdiabetes.com/conferences/friends-for-life-orlando-2020/

 

[tsumgirl]

Thank you to everyone who has shared their experiences and the OP for asking. I've invited my mom to join me on my next trip, and never realized how all that extra walking may affect her insulin levels. Bookmarking these posts in case she decides to come with me so I can be prepared knowing what to watch out for.

 

[Mac2008]

Watch for lows in the middle of the night, though. That's when they'll be showing up.

Thank you so much for replying, buffettgirl -

one question, based on your experience - how do you "watch for lows in the middle of the night?" Do you mean that you literally wake up and check in the middle of the night, or make sure they are at a specific level before bed, or? I will definitely add this to the list of the things to discuss with the clinic before the trip but would so appreciate your thoughts on this as someone actually living this. Thank you!!

 

[siren0119]

Thank you so much for replying, buffettgirl -

one question, based on your experience - how do you "watch for lows in the middle of the night?" Do you mean that you literally wake up and check in the middle of the night, or make sure they are at a specific level before bed, or? I will definitely add this to the list of the things to discuss with the clinic before the trip but would so appreciate your thoughts on this as someone actually living this. Thank you!!

Whenever we have to make changes to my husband's basal rate, bolus rate or delivery we do overnight checks. Even if you have a fantastic BG at bedtime, there's no way to know what the BG + insulin onboard + insulin sensitivity will translate to overnight. Especially in the beginning, you may need to wake her for overnight testing whenever there's a change (environmental or medical) so that you have good information on how it's affecting her.

 

[SeattleTink]

You already have a ton of advice and encouragement, but wanted to chime in. My son was 12 when diagnosed and we took a trip to Disneyland shortly after his diagnosis.

Yes, make sure to test her blood sugar often because of all of the walking. It will be easy for her blood sugar levels to drop because of all of the walking.

I do vividly remember standing in line at Soaring over California (obviously, a few years ago) and my son not feeling well. His blood sugar had dropped and we were out of snacks. A very kind lady who was near us overheard us chatting and she gave us a granola bar for my son. She explained that she too was diabetic, and she knew she had to help. From that day on, we always carried either fruit snacks (the Welch's brand are his favorite) or some kind of granola bar for a quick boost to his blood sugar. Something that has 15 - 20 carbs seems to do the trick for a quick boost.

The first few weeks and months are the hardest, and in no time your daughter will integrate all of this new "lifestyle" into her routine. My son is now 23 and he has not been back to the hospital since his initial diagnosis.

Best of luck to you and her- have a terrific trip.

 

[buffettgirl]

Thank you so much for replying, buffettgirl -

one question, based on your experience - how do you "watch for lows in the middle of the night?" Do you mean that you literally wake up and check in the middle of the night, or make sure they are at a specific level before bed, or? I will definitely add this to the list of the things to discuss with the clinic before the trip but would so appreciate your thoughts on this as someone actually living this. Thank you!!

Wake up and check. Absolutely. You should probably be doing this anyway but many doctors for some reason don't seem to tell parents to do it, weather it's in some mistaken notion that it will overwhelm a parent, or what I don't know. But, think about it, it's half the day where you literally have no blood sugar data. Diabetes doesn't take a break because it's night time. Just because they go to bed at a decent number, and wake up at a decent number, you have no idea what happened for those 8 hours - lows? highs? who knows. And it's especially important to check at night when there's a whole lot of added activity for the day.

t's one of the best things about a CGM...being able to sleep through the night.

And here's the thing; within a few months you will be the expert on your child and diabetes. Not the clinic. It's hard to believe, but this is the job that they should be training you for. They know "diabetes" you know "diabetes as it pertains to your child and the real world". They're often very different things. I know it seems overwhelming right now, but quickly you will have this all down and it will just become part of life. You CAN DO IT.