newly diagnosed Type one diabetes -disney in december any tips?

[kristennn]

So my 13 year old - who is already status post liver transplant (10 years ago) just got diagnosed with type one diabetes this week.
We have a trip to disney already planned in December - and now i am especially glad we're going because I feel like we really deserve it. Ironically her dad has been to disney with us 3 times and I never worried about his diabetes because he just eyeballs his food and makes a carb guess. I know all the walking made his blood sugar go lower.
Anyway right now we are just getting started with her carb counting etc. and it's a lot. Hopefully by the time our trip comes we will be pro's - but in general i am wondering - are there resources people have used for disney and carb counting/type one diabetes? anyone been there/done that and have tips for us?

 

[alliecat523]

My husband eyeballs it too. But there are tons of healthy low carb options in the parks. I would check out the menus beforehand to get an idea. Also look for the Mickey Check signs which indicate healthier options.

I use My Fitness Pal to track food and there are some options noted in there with full nutritional values.

 

[Ralphmiller007]

This probably doesn't really help with your question, but maybe it would be something to think about in the future...Both my sisters and my niece have had Type 1 from a very young age, and they all three now use continuous blood glucose monitors. Maybe it's something you're already aware of, but I think these monitors are amazing. My youngest sister has had the most consistent blood glucose and best HbA1C in 15 years. The monitor has a very slight delay in exact blood glucose readings, but alert the user to trends and even vibrate and beep when blood glucose is trending down or up too fast. This has been so beneficial for my sister that had issues with dropping dangerously low overnight. It is also has worked wonders for my super active niece, she can even wear it at gymnastics when she is exercising like crazy. Between all the walking and fun pool time at Disney, I can see where low numbers could be as problematic as high from all the snack options. I would say frequent monitoring and carrying in some appropriate snacks would be my suggestions. Again, I'm not sure if this helps with your original question, but I just wanted to make you aware of something that's been really helpful for my own family. I hope you and your family have a great trip!

 

[Upup4fun]

Im assuming your son has the pump. Sometimes you can ask employees how many sugars and carbs are in the food.

 

[NicoleLarson]

I'm a dietitian and a diabetes educator. It is VERY overwhelming at first. Never trust an CM on how many carbs are in a meal, they have no training in this. In assuming you know, don't look at sugars, just total carbohydrates. Make sure you have a good understanding of which foods have carbs and which ones don't, espically non-starchy veggies vs starchy veggies. That's one that my patients always get mixed up. You have six months to train with this so, you'll be a pro by them. Diabetes.org is a great site but I don't know anything specifically geared towards Disney...maybe I should start one! Unfortunately WDW doesn't list their nutritional facts anywhere. Your dietitian/CDE are your best resources. Perhaps you can find pics of things you want to try and show them so they can help you decide the carbs. Hope you have a wonderful vacation, it will be well deserved!

 

[ConnecticutFlea]

My grandson was diagnosed with type 1 diabetes on a Thursday when he was 16 years old. We had plans for a trip to Yellowstone the following Wednesday. He and my daughter (his mother) had a few days of education and we were all thrilled that we were actually encouraged to go as planned. My daughter carried around a measuring cup and they used phone apps to assist with carb counting. The one they used was called Calorie King. It also comes in book form. The trip went well.

The next spring we went to Disney. Disney does not have carbs listed, but by then they knew how to guesstimate the carbs pretty accurately (so no more measuring cup). My daughter kept a supply of juice in the room in case his sugar dropped in the night. The walking can cause it to drop. He uses a FRIO cooling case when bringing his insulin in the park because of the heat.

Now he is 19 and in college. We go to Disney at least annually. He does have a dexcom that lets him know when his blood sugar is high or low. We still stock juice for nighttime in case his sugar drops.

It does seem overwhelming at first, but life goes on and it gets better. Enjoy your trip!

 

[gonzalj1]

Sorry to hear about the diagnosis. As T1D myself I know how overwhelming it can be at first to count carbs, monitor BS and calculate insulin doses. I echo the statement above that I hope your son is on the pump rather than syringes. Trust me its much easier on the pump. My pump (Medtronic) calculates my boluses and corrections for me based on my BS readings and carb estimates. Wonderful advancement that keeps me from making simple math errors and ending up with a hi or low to deal with.

I second the recommendation to use a smartphone app to help with carb counting. You'll have to eyeball portions or bring some measuring cups/scales but they tend to be pretty accurate with their nutritional info. Also,talk to your doctor about the basal rate you should use (assuming you're on the pump) as all the walking can lower blood sugars so a lower rate is usually needed to guard against them.

My advice - enjoy your trip, test often and correct as needed. Always have a good carb source with you to combat lows and you'll be fine.

 

[fifthdimensiondweller]

Both of my parents were diabetic and one resource we used heavily when planning trips are the menus being posted online. My parents would try to loosely pre plan some of their meals ahead of time to help avoid the panic of reading a menu in the place and trying to figure everything out within ten minutes.

 

[CarolynFH]

About 10 years ago we brought DD's best friend with us. She was 17 & had been T1D since age 11. When we made ADRs we added a notation about her diabetes to each one, and the chef would come out and talk to her about the menu. They usually had no-sugar-added desserts too. So be sure to add that notation on all ADRs.

 

[kristennn]

This probably doesn't really help with your question, but maybe it would be something to think about in the future...Both my sisters and my niece have had Type 1 from a very young age, and they all three now use continuous blood glucose monitors. Maybe it's something you're already aware of, but I think these monitors are amazing. My youngest sister has had the most consistent blood glucose and best HbA1C in 15 years. The monitor has a very slight delay in exact blood glucose readings, but alert the user to trends and even vibrate and beep when blood glucose is trending down or up too fast. This has been so beneficial for my sister that had issues with dropping dangerously low overnight. It is also has worked wonders for my super active niece, she can even wear it at gymnastics when she is exercising like crazy. Between all the walking and fun pool time at Disney, I can see where low numbers could be as problematic as high from all the snack options. I would say frequent monitoring and carrying in some appropriate snacks would be my suggestions. Again, I'm not sure if this helps with your original question, but I just wanted to make you aware of something that's been really helpful for my own family. I hope you and your family have a great trip!

I have already talked to our nurse about this and am hoping to get one for her before she starts school in the fall.

 

[kristennn]

Sorry to hear about the diagnosis. As T1D myself I know how overwhelming it can be at first to count carbs, monitor BS and calculate insulin doses. I echo the statement above that I hope your son is on the pump rather than syringes. Trust me its much easier on the pump. My pump (Medtronic) calculates my boluses and corrections for me based on my BS readings and carb estimates. Wonderful advancement that keeps me from making simple math errors and ending up with a hi or low to deal with.

I second the recommendation to use a smartphone app to help with carb counting. You'll have to eyeball portions or bring some measuring cups/scales but they tend to be pretty accurate with their nutritional info. Also,talk to your doctor about the basal rate you should use (assuming you're on the pump) as all the walking can lower blood sugars so a lower rate is usually needed to guard against them.

My advice - enjoy your trip, test often and correct as needed. Always have a good carb source with you to combat lows and you'll be fine.

My daughter just got diagnosed earlier this week - so right now she is getting shots - but in the future I hope to do a pump. It didn;t occur to me that we may be at that point already in December!

 

[Cappy Wynne]

This isn't food related but if you call housekeeping they will bring you a sharps container.

 

[thepicklebee]

My DH has a pump but doesn't use a continuous monitor. For him he finds that he tests more frequently than he does at home, and makes sure to eat snacks more often. Other than that... No problems.

 

[anditoo72]

Thank you for starting this thread! DH is diabetic (type 2) and it has been on my mind (not his of course ) so I am glad to hear all your tips.

 

[TinaLala]

My DD14 is a type 1 diagnosed a year ago. We went to Disney last October for our first time since diagnosis.

Here's what I recommend assuming you don't have a pump! Sorry for the list

1. Bring extra supplies for your extra supplies - back up supplies in everyone's bag. We ran out of tester strips during a three hour flight delay! Be sure you keep supplies on you at all times. That includes Keytone tabs!
2. Test often. Not sure when you're going but heat does a doozy on levels. Listen to how she feels and take it seriously. We had a 62 blood sugar at Animal Kingdom after the Dinosaur ride.
3. Fluids! Diabetics dehydrate twice as fast. Extra waters are a bonus. Make them drink!
4. Disney has NO CARB COUNTS for their food! Make sure you have Calorie King loaded to your phones and can make guest-estimates. We actually brought a portable scale and camping collapseable cup for measurements.
5. If you're doing insulin pens bring a lunch cooler so insulin doesn't get too warm but doesn't get cold.
6. No carb snacks - nuts, pepperoni, cheese sticks are great snacks between meals that won't effect levels.
7. Bag checks - Disney is used to diabetics. We just told security at the gate and it was no problem.
8. If you do have a pump remember to bring your power cord.
9. Take breaks often - good time to test and drink.
10. Organize carb snacks with meals. When you have 30 mins to eat after insulin, be sure to ask waitress to bring dessert with meal! We planned meals and then would get Mickey ice creams right as we left restaurant.
11. Assume blood sugar levels will be a little crazy. Talk to your Endro about travel. You can average out levels day to day but know your BS levels might not be perfect.
12. Remember to bring your Endrochronologists phone number! Things happen.
13. Read up on foods that bring blood sugar down - broccoli is a great one.
14. Candy and treats can be brought home or eaten with meals.

BIG THING - Don't deny her. Remember Diabetes is a HUGE life change for a child. It's not that she CANT have it, it's just that she needs to take insulin in order to have it.

Connect up with a support group through JDRF. A mentor and support for you and her is a great help to give you the tools you need. We're on a pump now and are looking forward to our next trip! Let me know if you have any questions!

 

[mommycrawford]

Different diet, but it may be helpful to look at gfinorlando dot com and see the Disney section, as a gluten free diet avoids a lot of carbs....There are lots of restaurant reviews, and menus offered. You will want to speak to a chef at table service restaurants and managers at quick service restaurants to insure care is taken....I am sure it seems daunting because it is a new diagnosis, but you can feel confident that it is very manageable on a Disney vacation!

Subbing green beans or broccoli for mashed potatoes, and the like, or having a bunless burger are all doable!

 

[Tbone17701]

I'm sure this thread is a big help to many!

We are taking our T1 niece and nephew (who will be 14 and 16 at the time but were diagnosed at 2 and 5 respectively) for their first onsite stay next year for our DD's 13th bday. This is a dream trip for us to have these three kids experience the magic of being in the Disney bubble together at least once. They're picking the resort, the ADRs and being given free rein to go whole Disney hog! It's so much fun to watch them plan! We're not 100% yet if their parents are letting us take them solo though. Needless to say, it's a big decision for them. We've been a consistent part of their lives since they were born and are the only adults who have learned how to care for their diabetes so we can be there when their parents can't, but we're still not their parents. We've taken our niece to the beach with us for a week, but that's a 4 hour car ride vs a 2.5 hour plane ride away. My DH and I are about as anal as they come and he has been nicknamed BG (bodyguard) by friends and family for how protective he is of any children in our care at any time, so we know we'll be as prepared as anyone can be for this adventure and will happily do whatever is needed to provide them with proper care in order to make this dream trip a reality for the kids. Their parents know that too, but I get their hesitation.

Anyway, I did see something here that I had forgotten to make note of (requesting a sharps container) and something I hadn't thought of at all (adjusting the basal rate to counteract the walking), so thanks to those who posted those tips! I will also download the CalorieKing app, though we've got a pretty good handle on the food and beverage thing (our nephew also has a peanut allergy) and the kids are fantastic with most things themselves. Their parents are also only a text or call away if needed. We are doing our first June trip (much to this cold weather loving girl's dismay) since the older two are in high school with AP classes and drama club productions throughout the year, so the heat will be a factor, but we'll stay on top of it.

I do have a question that their parents can't answer and was hoping someone here might be able to...their family has never flown and I know we will probably have one full bag just of supplies that I would like to keep with me. Any input on how that works with TSA? What about wearing their pumps through security? Any info on flying with them and their supplies would be very much appreciated!

 

[gonzalj1]

I do have a question that their parents can't answer and was hoping someone here might be able to...their family has never flown and I know we will probably have one full bag just of supplies that I would like to keep with me. Any input on how that works with TSA? What about wearing their pumps through security? Any info on flying with them and their supplies would be very much appreciated!

I travel often - too often if you ask DW - and I have no issues with TSA. I usually carry insulin, my pump and my tester and the associated lancets. I've yet to have an issue. As for your pump, BE CAREFUL, most can't go through the X-Ray and don't recommend going through the body scanner either, check with the pump manufacturer. Medtronic instructs us to ask for a hand search and its never been an issue for me. I ask politely for a hand search and basically they frisk me. They can do it right there or take you to a private room if you desire. Allow some extra time for this and you should be fine.

I did have one TSA in SFO try to tell me my pump would be fine going through the body scanner. I politely insisted on the hand search by telling him the manufacturer says not to go through there and it was not a problem.

 

[gonzalj1]

8. If you do have a pump remember to bring your power cord.

Interesting - my pump simply uses AAA batteries. Never considered there might be some with rechargables.

 

[Tbone17701]

I travel often - too often if you ask DW - and I have no issues with TSA. I usually carry insulin, my pump and my tester and the associated lancets. I've yet to have an issue. As for your pump, BE CAREFUL, most can't go through the X-Ray and don't recommend going through the body scanner either, check with the pump manufacturer. Medtronic instructs us to ask for a hand search and its never been an issue for me. I ask politely for a hand search and basically they frisk me. They can do it right there or take you to a private room if you desire. Allow some extra time for this and you should be fine.

I did have one TSA in SFO try to tell me my pump would be fine going through the body scanner. I politely insisted on the hand search by telling him the manufacturer says not to go through there and it was not a problem.

Good to know! I'll definitely have them check with the manufacturer, but it sounds like requesting a hand search is the safer bet. Wonder if they'd let DH and I each accompany a kid during the search since they are minors? I worry as first time flyers that this might freak them out a bit. I'll have to research that. Thanks for the info!