Disney with Diabetes?

[camack7827]

I'm taking my family down to Disney in 13 days... 6 days ago we found out my 3 year old son is diabetic. As we settle back into life and get used to a new way of doing things, I am now thinking about our trip that is now less than 2 weeks away. I called DVC Member Services today and got a number for "nutritional needs" and will be calling them on Monday. From the sounds of it, they handle all of the food alergy questions etc. Of course we'll be letting our servers know before each meal, but I was actually hoping to get the nutritional value (specifically the carbs) for as many restaraunts as I can before we go. Because my son is so young, we're "post dosing" him with Humalog. What that means is that he really doesn't have a carb restriction, we just need to track how many carbs he has at each meal.

I'm actually surprised at how little I've found so far, can anyone point me to a good resource listing the carbs of typical Disney food?

Thanks,
Chris

 

[SueM in MN]

I'm taking my family down to Disney in 13 days... 6 days ago we found out my 3 year old son is diabetic. As we settle back into life and get used to a new way of doing things, I am now thinking about our trip that is now less than 2 weeks away. I called DVC Member Services today and got a number for "nutritional needs" and will be calling them on Monday. From the sounds of it, they handle all of the food alergy questions etc. Of course we'll be letting our servers know before each meal, but I was actually hoping to get the nutritional value (specifically the carbs) for as many restaraunts as I can before we go. Because my son is so young, we're "post dosing" him with Humalog. What that means is that he really doesn't have a carb restriction, we just need to track how many carbs he has at each meal.

I'm actually surprised at how little I've found so far, can anyone point me to a good resource listing the carbs of typical Disney food?

Thanks,
Chris

I am sorry to tell you that Disney does not provide carb information on any of their foods except some of the prepackaged foods.

If you look in post #3 of the disABILITIES FAQs thread, under the heading of Specific Concerns or Conditions, there are a number of links to past threads and information about diabetes and WDW. The disABILITIES FAQs thread is near the top of this board, or you can use the link in my signature to get there.

There have also been some recent threads about children with diabetes if you look on the past few pages of this board.
There are some frequent posters with children with diabetes who will probably be by soon to help you out. They are very experienced, helpful and I am sure will be able to give you some good advice. They do usually suggest some of their favorite guidebooks with carb counts so that you can get a better idea of estimating carbs in foods where that information is not available.

 

[Indychick]

My mother in law is also diabetic and she still enjoys most of the food. I find that most resteraunts have a fresh fruit option for desserts and also meat dishes without the high car count others can have. I also think that most of the servers can be very helpful if you let them know, as you state you will, at the beginning of the meal. Good luck and have fun!

 

[Selket]

I'm so sorry about your son's diagnosis. My younger son was dx'd with type 1 when he was 26 months old and it takes awhile to get anywhere back near normal...it is quite an adjustment but it does get easier.

The *best* website is this one: http://allears.net/pl/diabetes.htm The family responsible sometimes frequents this board. They have two kids with type 1 and are WDW vets.

I *highly* recommend that you visit the Children With Diabetes website at: http://www.childrenwithdiabetes.com There are forums and a chat room there - the forums are invaluable - especially the parents one.

The Children with Diabetes folks hold several conferences throughout the year all over the USA and the world but their biggest and best is held in Orlando and THIS summer it is at WDW at Coronado Springs in July. If you can at all swing it - it is well worth your time and money. They even have child care for both of your children (diabetes or no) for no extra charge. The conference website is: http://www.childrenwithdiabetes.com/activities/Orlando2009/ It is absolutely amazing to see so many people going through exactly what you're going through. My son is 7 yrs old now and he cannot wait to go this summer (we've been twice). My older one is 11 (not D) and can't wait either! I cannot stress to you the importance of the connections you make at that conference - and getting connected into the forums at CWD.

You are correct about your child not having a carb restriction - just figuring out the carbs is difficult however. I have a small copy of the Calorie King book and you can often get an idea of how many carbs something is by looking at that. It is helpful to learn what a 1/2 cup of pasta or rice looks like.

At home we use a Salter Nutritional Scale - you can google and find them many places - like at amazon.com. You can put raw or cooked food on it (like cooked pasta) and it will tell you the carbs. We use it for every meal we're at home and it really helps you to learn how to eyeball serving sizes and carb counts. Much more accurate than measuring cups. Wonderful for fruit too.

Hope you have a wonderful trip.

 

[Dismom55]

I have diabetes, type 2. I know my situation is a bit different, but really with all the great info you have gotten so far, it really boils down to the fact that it will take time, but after some time you will pretty much be able to look at a plate of food and know how much is the right portion of food and will be able to estimate the carbs. I am not suggesting doing this for all meals, but when eating out and not being able to get those numbers.


One word of warning, there is one restaurant in our area that seems to add sugar to everything, we no longer eat there because it is not worth it to have such a high BS the next morning to me as I have worked very hard to get off insulin and am now only on one pill instead of two. What I am saying is that in time you will know which restaurants to go to and which to avoid.

I found on our last trip to Disney that I did not have hugh Bs spikes by watching what I ate and of course being an adult all the walking.

Good luck, it takes some time, but you all will get thru this learning curve.

 

[Schmeck]

Weight Watchers used to have a pocket sized calorie counter that had foods broken down into carbs/fats/proteins as well. My mom used to have one, but that was 10+ years ago, so I don't know if they still make them. You could check at your local WW to see if they have any for sale.

 

[pudge the fish]

This is one area that Dinsey has troubles with and it's probably impossible to post carb counts for ALL that food.

When I was on carb counting I preplanned by looking at menus on teh Dis and on Allears- I kinda did the well a cup of green beans in real life has___ carbs and should have about the same at Disney.
Chicken nuggets same way as well as Hot dog buns..Popcorn - you kinda have to eyeball the serving size-

calorie King book/website is awesome as was stated before

Have an awesome time don't be afraid to ask questions - the waitstaff will always call a chef or manager to answer questions.

 

[Chloesmom]

Sorry to hear about your son's diagnosis. My Dd was 6 and diagnosed days before we went to Disney. She was released from the hospital on Tueday and Wednesday we went to WDW so i learned how to handle Disney kinda fast. Disney has not really grasped the carb count issue but chefs will help you all you can... My advise is to guess as best you can and test often to make sure you are on track. Rememeber BS will react totally different in Disney than home.. the excitement, heat and walking will affect it greatly. DD's sugar goes sky high when she gets excited . I always have to adjust her basal rate on her pump when we go to handle it.
Some other advice I have is to take extra supplies... if it can happen it will happen in disney. We have had broken meters, frozen insulin... total nighmares.. Now we take 3 meters, twice the number of strips and supplies than we could ever imagine needing.. oh.... and we check the fridge before we put insulin in it...
Bottom line is relax, have fun and deal with issues as they come.. you and your son will still have fun... It's Disney!

 

[camack7827]

Thank you all so much for such great advice. As many of you have experienced, the first week is chaotic at best. With the 3.5 year old son getting used to finger pricks and insulin shots, and a 1.5 year old daughter being 1.5, it's been a busy week. We went to Children's Hosptial of Philadelphia, and they were great. They actually recommended the childrenwithdiabetes.com website, and gave us a copy of the Calorie King book. Our biggest challeng so far has been counting/dosing correctly. His BS is bouncing all over the place, but fortunatly hasn't gone below 87 since we got home. Unfortunately, 200-300 has been the norm and we are trying to keep him below 200. Good news is that we haven't had ketones since our first night in the hospital.

As I read up on the "basics" and try to learn more about diabetes in general, it occured to me that our Disney trip might be quite a challenge being that it's just 3 weeks after diagnosis. With the little ones, our plan all along is to go out in the mornings, head back for the afternoons, then go back out in the evenings. We weren't planning on pushing very hard at all, so now we'll even step back a little more. My concerns are around how the heat, 6+ hours of walking and/or standing, etc will affect him. Being that we won't be experts on how to keep his BS even at home, I'm sure our week in Disney will be interesting to say the least. I really do appreciate the kind words and ALL of the information you guys have provided.



Chris

 

[camack7827]

I'm so sorry about your son's diagnosis. My younger son was dx'd with type 1 when he was 26 months old and it takes awhile to get anywhere back near normal...it is quite an adjustment but it does get easier.

The *best* website is this one: http://allears.net/pl/diabetes.htm The family responsible sometimes frequents this board. They have two kids with type 1 and are WDW vets.

I *highly* recommend that you visit the Children With Diabetes website at: http://www.childrenwithdiabetes.com There are forums and a chat room there - the forums are invaluable - especially the parents one.

The Children with Diabetes folks hold several conferences throughout the year all over the USA and the world but their biggest and best is held in Orlando and THIS summer it is at WDW at Coronado Springs in July. If you can at all swing it - it is well worth your time and money. They even have child care for both of your children (diabetes or no) for no extra charge. The conference website is: http://www.childrenwithdiabetes.com/activities/Orlando2009/ It is absolutely amazing to see so many people going through exactly what you're going through. My son is 7 yrs old now and he cannot wait to go this summer (we've been twice). My older one is 11 (not D) and can't wait either! I cannot stress to you the importance of the connections you make at that conference - and getting connected into the forums at CWD.

You are correct about your child not having a carb restriction - just figuring out the carbs is difficult however. I have a small copy of the Calorie King book and you can often get an idea of how many carbs something is by looking at that. It is helpful to learn what a 1/2 cup of pasta or rice looks like.

At home we use a Salter Nutritional Scale - you can google and find them many places - like at amazon.com. You can put raw or cooked food on it (like cooked pasta) and it will tell you the carbs. We use it for every meal we're at home and it really helps you to learn how to eyeball serving sizes and carb counts. Much more accurate than measuring cups. Wonderful for fruit too.

Hope you have a wonderful trip.

Thank you, thank you, thank you... this post is amazing and I truly appreciate all of the info here. I'll look up a Salter Scale, I haven't heard of that before but it sounds interesting. I've taken a look at the Allears page, and the CWD conference, both are great and I'll seriously think about going to the conference in July. If we can't make it work this year, we'll certainly work it into our plans next year. Meeting/talking with other parents who are going through the same thing has been very theraputic. There is certainly a mounting of information out there, we're just getting started so all of this is very much appreciated.

Chris

 

[camack7827]

Sorry to hear about your son's diagnosis. My Dd was 6 and diagnosed days before we went to Disney. She was released from the hospital on Tueday and Wednesday we went to WDW so i learned how to handle Disney kinda fast. Disney has not really grasped the carb count issue but chefs will help you all you can... My advise is to guess as best you can and test often to make sure you are on track. Rememeber BS will react totally different in Disney than home.. the excitement, heat and walking will affect it greatly. DD's sugar goes sky high when she gets excited . I always have to adjust her basal rate on her pump when we go to handle it.
Some other advice I have is to take extra supplies... if it can happen it will happen in disney. We have had broken meters, frozen insulin... total nighmares.. Now we take 3 meters, twice the number of strips and supplies than we could ever imagine needing.. oh.... and we check the fridge before we put insulin in it...
Bottom line is relax, have fun and deal with issues as they come.. you and your son will still have fun... It's Disney!

I would love to talk to you about MANY things, but first and foremost... how did you go about getting additional meters? It makes a lot of sense to have at least one backup with you at all times, I just hadn't thought of it yet. Do I take that up with my insurance company?

We actually have an extra meter from CHOP, they gave us one that they trained us on before finding out my insurance wouldn't cover that brand. We picked up a 2nd one at the pharmacy, so now we have two meters but only have strips for one of them. I looked into buying the strips "off the shelf", but at over $100 per 100 strips, that is cost prohibitive. I guess it would be a decent "back up" option though.

Thanks again!
Chris

 

[Dismom55]

I have several meters also, I have one I keep at home and never travel with and several others I can travel with, but one that takes the same strips as my stay at home one so I sort of have stuck with that one, it is smaller and easily put in my fanny pack.

I have gotten them for free, I have seen commercials, went to the website and fill in the info they want and usually get a freebie in no time. I have done this more than once, not just for me but for my mother and brother so they also have a back up meter that is the same as thier primary one.

One touch and freestyle come to mind. I also have a regular size one from bayer, it is not old I just do not need it and quite honestly I do not remember if I have ever used it, I believe I got it and then saw the opportunity to get the freestyle lite that takes the same strips as my primary meter and decided it would be easier to only have one kind of strip around. I plan to give that one to the senior center in our town, thinking some older person may have a need.

I did have one day where my sugar crashed on our last trip, it was nearly the last day and I did not eat soon enough and the fact that I had drank a 1/2 glass of wine to celebrate my 35th wedding anniversary the night before may have had something to do with it. I now keep the glucose tablets handy, in my fanny pack when I am away from home for days like that.

I understand that in diabetic cases the CM's are taught to react quickly with soda or what ever it takes if you let them know, we were silly and did not. I am also allergic to metals so I can not wear the medical alert things. But I do recommend that you get one for your son if you have not already. My solution is I found a website where I can print out my medical conditions, it prints out the size similiar to a business card, little bigger, but fits in my wallet, it has all my info. I will update it just before my next trip, laminate it and keep it in my fanny pack just in case. Oh yes, it has the medical icon in red, thinking I just might make it attach to the outside of my fanny pack. If using a stroller you could do something similiar with the stroller, make a stroller tag, one side family name, the other side medical allert for your son.

Ok, out of ideas now.

Hugs to your son.

 

[Eeyores Butterfly]

Ask your doctor for an extra meter. He should have a ton. Also, the meter companies give them away like candy. You just call them up and tell them you want to try their meter and they will send it to you with 10 free strips. I find that Abbott, the makers of the the Freestyle Lite have the quickest response. I received my meter two days after ordering from them. They also have what is known as the Promise Program. They will give you a card that can get you strips for as low as $15 a month.

Many people find that they go low in the heat, so definitely keep some form of glucose (probably gel, shots, or juice boxes since he is too young to handle tabs) with you at all times. I would also recommend a stroller and get the stroller as a wheelchair tag so you can take it with you in line. This will keep him from overexerting and give him a place to rest in line if he goes low.

 

[Eeyores Butterfly]

I would not count on CM's knowing what to do. I've worked attractions and entertainment and this was never something I was prepared for or talked about. CMs in food and beverage may be different, I have not worked those areas so I don't know. If you have a problem and do not have your stuff with you, let the CM know what you need. Some may be familiar with diabetes and low blood sugar, many probably are not. So if you just said your son's sugar was low they would not know what to do. This is why I highly advocate keeping something with you.

One thing that might be handy for having a meter and glucose options close at hand is a spiBELT. I know a lot of kids also use them for pumps. I just ordered one for myself for working out and a lot of people like them. You can find them at www.spibelt.com. That way you can have that stuff with you in places where you may not be able to bring a bulkier backpack.

Another good site for some of this stuff is Healthy Outcomes. It is a free site you can sign up for and play games, take surveys, and learn about different aspects of diabetes. You earn points toward free items such as glucose tabs, gels, lancing devices, meters, low car foods, etc. I was able to receive my spiBELT through them. As a member you can order from various companies and get a very hefty discount so it might be worth chcking into. Their website is www.healthyoutcomes.com.

 

[Dismom55]

Checked out the website, what a neat website, great educational tool. Thanks

 

[Schmeck]

As I read up on the "basics" and try to learn more about diabetes in general, it occured to me that our Disney trip might be quite a challenge being that it's just 3 weeks after diagnosis. With the little ones, our plan all along is to go out in the mornings, head back for the afternoons, then go back out in the evenings. We weren't planning on pushing very hard at all, so now we'll even step back a little more. My concerns are around how the heat, 6+ hours of walking and/or standing, etc will affect him. Being that we won't be experts on how to keep his BS even at home, I'm sure our week in Disney will be interesting to say the least. I really do appreciate the kind words and ALL of the information you guys have provided.



Chris

At age 3 1/2 he could be quite comfortable in a stroller at WDW - get a clip-on fan to keep him cool, or one of those spray mister things. I don't know of any 3 1/2 yr olds that walk 6 hours at WDW, they all use strollers!

 

[buffettgirl]

Hi and welcome to the group you never thought you'd be included in - parents of children with diabetes. It's a very elite group..we don't let just anyone in First off...hugs to you on your child's dx. It's a totally stressful time but you will soon find that life will pretty much go back to a new normal. It's not a bad life..it really isn't. And Disney is a fun place - with or without diabetes.

One thing we did is carried our calorie king book everywhere. We got pretty good approximations on things like chicken fingers etc...Disney is absolutely horrible at providing nutritional info, but most of the kid friendly food is fairly standard kid food, so Calorie King will help you a LOT. I also like using the USDA's website for nutritional info. Access it from your blackberry or download it.

I agree with Carol - get on over to CWD and join the fun posting. You'll learn so much info.

Free meters - never never never never never pay for a meter. The companies that make them expect them to be free..they watn you to be loyal to THEIR test strips..that's what costs money. So either wait for your brand of meter to go on sale at CVS/Walgreens/Rite Aid (each week meters are on sale for free or next to free) or call the meter company or ask your endo. But you should never have to pay for a meter. And you do want a back up..or two or six.

 

[Pooh Crew]

Hi, and welcome to the world of type 1 diabetes. So sorry you have to join us.

We've done Disney three times since my son's diagnosis. He was on an insulin pump for one or two of the trips, but shots for the first trip. Honestly, his glucose numbers were excellent in Disney. Even with Mickey bars, desserts, all the walking, excitement, nerves about scary characters, lack of sleep, etc., he stayed level and all was fine.

You've already gotten all the advice I would have given (the childrenwithdiabetes website is the best!) so I'll just say that dealing with type 1 is a chore, but it does get easier. I have become a carb savant--I can accurately guess the carb count of ANYTHING!LOL (Yeah, that's the talent I was hoping my fairy godmother would grant me.) Soooo...have a wonderful time at Disney!!!

 

[PapillonMom]

Hi,

I am so sorry to hear about your son. I was diagnosed with type 1 at the ripe, young age of 19 and my mom still had a hard time with it I was away at college and I think her not being there was very hard for her.

Anyway, I just wanted to let you know that anyone who has been diagnosed or has had a child be diagnosed knows how you are feeling right now. It feels as if your world has been switched around and you need to find which side is up. I just want to say it does get easier.

I was lucky at 19 (11 years ago ) my boyfriend (now husband) was there with me the entire time. I am sure your son will feel lucky to have you as well.

When we go on trips to DL (going to DW 1st time in June!) I have found my blood sugar to be great. I think from all the walking and such. I just have to bring candy with me (just in case). Also, before you go make sure you have a glucagon shot to take with you. I have never had to use one but take it with me to things like theme parks just in case.

I have never had any trouble flying with all the needles, medicine and such in my purse. Actually, I have only been asked once about any of it- ever. So if you are flying don't stress over security. It seems they have seen it all.

One final thing, if, in the future, you decide to look into an insulin pump for your son (I know a lot of info you probably don't even want to think about right now) look into the Omnipod. I love it! it is tubeless and wireless and not very big. The PDM (personal diabetes manager- aka: the remote) has a meter built in. Makes it very handy when you don't want to carry a ton of stuff. I used two other pumps before this one and never want to go back to having a tube.

I know I tend to ramble so I hope this wasn't too long (or boring). Best of luck to you and your family. Have a WONDERFUl trip!

 

[77SU]

DW and I joined the group last July at WDW. Our DD(20) didn't feel well before leaving home and saw our GP and he diagnosed acid reflux. On the way at DMIL, DD didn't feel any better and went to ER and MD there said she needed extra reflux meds. DD slept the entire 8-hr drive to Orlando and had no energy. We thought it was because of the meds, because she had never been on any. On day three we took her to the ER at Celebration and she was in full DKA, potassium was around 2, sugar near or over 400, and A1C was at 13.2. She spent the next 5 days in ICU at Celebration. If you ever need a hospital at WDW, we would hightly recommend the one at Celebration.

DD finally got her pump last week and is having to adjust to it. We leave on 3 June to have the trip she and DW didn't have last year.

DD has two or three meters that she got from her endocrinologist. They are all the same type, so the strips that he prescribed would work. As others have said, reps will hand out meters like candy, because they are going to get you (or your insurance company) buying the strips.

Good Luck!