Granddaughter just diagnosed with type 1 diabetes

[Earning my ears]

We are going to DW April 1-8th. Is there anyone out there that has experience with this that can give us some advice? tips? My granddaughter is 8 year old and we have the disney dining plan. I know there are people out there that can help us.

Please and Thank you!

 

[Kriii]

I don't have any advice but would suggest you check the disabilities board and also contact Disney regarding questions about specific dietary needs. I have contacted Disney about food ingredients for specific restaurants in the past and they have been helpful. Best of luck to your grandaughter.

 

[Sprockie]

Yes I'd be glad to help. I have a T1D daughter who is 15 now and we've been to Disney after her diagnosis. There is another thread not far down about T1D child and cruising that I wrote a long post about tips and things to bring. It all applies to Disneyworld as well.
I can't recommend having a CGM enough. It really helps and takes much of the stress out of daily life. You can tell at a glance if she needs a little snack at any time. If you can get your hands on one before you go, you'll thank yourself ten times over.
Is your grandaughter on a pump or MDI? You will no doubt find with all the walking she will tend to run lower than normal.
A FRIO bag is very handy to keep insulin and insulin pens cool on warm days. Keep lots of glucose tabs with you, juice etc. My best piece of advice I heard from our endo was that it was a vacation, don't worry about perfect control. Relax, have fun and get back on track when you return. There is no harm in running her higher than usual to keep her safe for the week. You'll have a better vacation and so will she. Not so high she develops ketones, but high enough you don't have to worry about lows all the time.
Any other questions I'd be happy to help with.
It does get easier. This is a very hard time at diagnosis, but it will get better and easier and more normal.

 

[disneyfaninaz]

My DD has Type 1 and we have been to Disney World once, Disneyland many times, and Disney cruises 3 times since her diagnosis. Have never had a problem. She was diagnosed at 9 years of age and is now 16.

The important thing is that she test her blood more often than when she's at home. All the running around at WDW will burn sugars and she may be more apt for going low. I agree with letting her run her BGs a little higher and not correct too much. We always carry emergency snacks with us, juice boxes, PB crackers, fruit chews, glucose tabs/gummies, etc. for those pesky lows.

Take twice as many supplies as you think you will need, (test strips, syringes, insulin, extra meter, etc.) We love using the FRIO Pack in the park to keep her insulin cool.

As far as the dining plan goes, as a Type 1 she can eat whatever any other healthy 8 year old would eat, she just needs to cover her carbs with insulin. I would also recommend getting the Calorie King Book. It will help with carb counting. WDW will not provide carbs even when asked.

Type 1 is daunting at first. But, as the previous poster said, as time goes by it gets easier and just becomes "normal." Eventually getting a pump and CGM will be ideal for managing her diabetes.

Just be more vigilant and enjoy your trip.

 

[Betty Rohrer]

We are going to DW April 1-8th. Is there anyone out there that has experience with this that can give us some advice? tips? My granddaughter is 8 year old and we have the disney dining plan. I know there are people out there that can help us.

Please and Thank you!

note it on any ressies and remind server when seated if not mentioned

 

[lanejudy]

Wow, your trip is just a week from now! And was she literally just diagnosed (in the past few weeks), or it's your first trip since a diagnosis s few months ago? Honestly, if it's a very new diagnosis, I strongly suggest that her parents discuss the trip with her doctor to see what is recommended. There is quite a learning curve for dealing with T1D with a child, and that isn't something I'd want to be learning new while on a trip like WDW.

If you do make the trip, I recommend bringing at least triple the testing supplies that you'd expect to need. Test often throughout the day. As others have suggested, it's better to let her run high as with all the activity the lows may come unexpectedly. Bring plenty of glucose tabs or whatever she uses for quick sugar to treat lows; and have plenty of good protein snacks on hand as well. WDW does not give nutritional information, so you will need to estimate the carb counts in her meals; a book or app like Calorie King can be quite helpful. Be aware that most "diabetic-friendly" desserts offered are likely to be fruit, which is not sugar free.

Enjoy your vacation!

 

[Sprockie]

note it on any ressies and remind server when seated if not mentioned

I'm not sure what the server would do, except if it is helpful to speed up service if a low is impending.
Type 1's can eat anything but rat poison, and cookies made with rat poison (direct quote from our endo).
As long as you have some good carb counting apps and/or the calorie king book, she can have anything. Things like pizza and pasta can be tricky - very delayed increase in blood sugar, so don't give much insulin before the meal if any. We bolus after pizza and pasta - it lines up with the sugar spike better. Fried foods also delays blood sugar response. You would bolus differently for say a grilled cheese sandwich on white bread (before the meal) vs. chicken fingers and fries (after the meal). A little travel scale is a good idea too - especially when you're first starting out and you have no idea what 1c. of pasta or 100 grams of apples looks like.
These tricks of managing type 1 diabetes come with time. As we say, if you let her run higher - no harm done (not too high though). She will be honeymooning, so she likely has some insulin of her own still working for the time being. That will help with this trip.

 

[DisneyOma]

They also have those collapsible measuring cups for measuring - I suck at estimating portion size.

 

[disneyfaninaz]

note it on any ressies and remind server when seated if not mentioned

No, don't do this. As mentioned above, Type 1 diabetics can eat normal foods. Half the time the servers don't understand the difference between Type I and Type 2 and would just push sugar free items that actually have more fat and sodium in them. No need! Don't bother telling the servers.

 

[thepicklebee]

No, don't do this.

a thousand times this.

My husband is a T1 diabetic is consistently annoyed at always being pushed towards sugar free items when people find out he has diabetes as he prefers to eat as naturally as possible and not eat things full of artificial sweeteners. There is absolutely zero reason anyone need note on a dining reservation that anyone is a type 1 diabetic.

 

[Sprockie]

Half the time the servers don't understand the difference between Type I and Type 2 and would just push sugar free items that actually have more fat and sodium in them.

........and it's not just servers. It's about 95% of the world it seems. Sooo frustrating. T1D needs to be better understood and not lumped in with Type 2.

 

[Selket]

Have to say I agree - do NOT mention to your server that the person has diabetes. It's usually not worth the trouble it brings and they'll try to bring her everything that has sugar substitutes in it - some of them can cause terrible diarrhea. Much of the sugar free stuff (other than drinks) can have almost as many carbs as regular foods.

My son was dx'd at 26 months and we've been to WDW more times than I can count. Since it sounds like your granddaughter was JUST diagnosed - I remember in those first few months we were on shots, and he was somewhat restricted in what he could eat due to us still learning how to handle everything - and learning how to count carbs. It is very true that she can and will be eating like any normal child fairly soon - especially with the help of an insulin pump and a continuous glucose monitor (these two things are beyond helpful but aren't required to eat normally). If we were going to WDW in the first few weeks or months of diagnosis we probably would have been careful with sweets and items with a lot of carbs. Since Disney doesn't provide carb counts, there are some books or apps that may be helpful. I haven't used those in a while so I don't know the latest and greatest - but perhaps someone else will have recommendations.

If she has some favorite foods (chicken nuggets, hamburger, pizza slice) it will be helpful to know what the carb counts are for those.

If you have no idea what I'm talking about with carb counts -then perhaps you will be limited to following whatever plan the doctor has set.

I think it's better to err on the side of having her run somewhat high than on the low side. Let us know if you have specific questions.

 

[disneyfaninaz]

........and it's not just servers. It's about 95% of the world it seems. Sooo frustrating. T1D needs to be better understood and not lumped in with Type 2.

I totally agree with you! This bugs my DD the most! I so wish they would rename Type 1 or the media would do a better job of differentiating the 2.

 

[gap2368]

bring extra things and also extra things for lows, make sure she eats something to keep her BG up, is she is newly DX talk to her ENDO about changing her insulin or if her parts know how,

drink water so she ( and really every one) dose not get dehydrated

and do not tell the restraints she has T1D and do not ask for carb count they do not know

 

[Sprockie]

If we were going to WDW in the first few weeks or months of diagnosis we probably would have been careful with sweets and items with a lot of carbs.

Yes, I agree. Although Type 1's can eat anything, to be safer on this trip, I'd opt for lower carb options and split a dole whip of whatever treats you have. Unless you are a seasoned carb counter and know how your insulins work, erring on the side of caution is best. It's the guessing at carbs and over-bolusing that gets us into trouble - even those of us who have been at this a while.

 

[anorman]

My DD14 has T1 diabetes and was diagnosed at age 9. Have snacks and low treatments with you for lineup lows so you won't have to leave a long line. FRIO bags are invaluable for keeping insulin at a cool temperature in Florida's heat. Always keep her glucometer with you.....almost all of Disney's rides allow you to bring bags onto the ride. The first aid stations in each park will take any extra insulin you pack and keep it refridgerated for you. We always keep a DKA kit at the first aid station but my DD is using a pump. Be aware that in the extreme heat of Florida, being overheated can mask a low since they have a similar presentation.....when in doubt, check her sugars.

Regarding the food at Disney, the restaurants do not provide carbohydrate information which I find extremely frustrating in trying to regulate her blood sugars....less so now that she is on the pump but, prior to this, trying to measure carbs for a strict diet was challenging. When we first travelled after diagnosis, we spoke to the chefs several times but found them to be very limited in being helpful......that being said they can let you know if there are any added sugar to the recipes they use. My best advice regarding nutrition is to bring a pocket sized book such as Calorie King. You should be able to use this as a rough guide to guessing how many carbs are in a serving size.

Good luck and have fun! She will be fine.

 

[gap2368]

Never ever put insulin in the hotel fridge if insulin freezes it is not good, learned this the hard way 3 times at disney and it was no fun. insulin will be fine in room tep. for 30 days ( give or take a few days) if you are concerned then you can get a few FRIO bags

 

[Earning my ears]

I want to thank all of you who took the time to reply. It's a little overwhelming now but I'm sure we will do all right.

 

[anorman]

I want to thank all of you who took the time to reply. It's a little overwhelming now but I'm sure we will do all right.

You will do fine. Have a fun trip!

 

[disneyfaninaz]

I want to thank all of you who took the time to reply. It's a little overwhelming now but I'm sure we will do all right.

Most of us have "been there, done that." Good luck and have a great time.