WOW! It's been a while~Traveling to DW with Diabetes

[Rapunzel]

So it's been some time since we've been to Disney World (May 2009 to be exact) and since that time my daughter (now 7) has been diagnosed with Type 1 Diabetes.

We are going to be attending a Diabetes Conference July 4-8th and decided to do 2 days at a Value resort on property prior to the trip. We will arrive on July 2nd and switch hotels to the Marriott World Center Resort on the 4th.

Not only will this be the first time traveling to Disney since her diagnosis, this will be the first time traveling period since. I'm freaking out to say the least and it's only going to be me and her. My husband cannot get the days off work and my son decided he'd rather stay with Grandma for a week than have to be "bored as heck listening to stuff about diabetes".

Any tips? Thanks!

 

[Selket]

Tips? Me giving you tips would be like drinking from a fire hose - LOL!

My younger son (now 10) has type 1 since he was 2 and we've been going to the conferences since he was 4. You should PM me and I can give you my email address and hopefully we can meet up. I'm also trying to plan a few days at a WDW resort before the conference. I'm also on the CWD boards.

Your son would LOVE the conference. I don't know his age but the kids programs are geared towards siblings as well. My older son (a teen) has been going from the beginning with us and looks forward to it every year.

This is a great website: http://allears.net/pl/diabetes.htm I think it covers most questions people ask. The FAQ has some links to previous threads about touring WDW with type 1. I haven't looked at those in awhile though.

We typically get a guest assistance card when traveling there in the summer. I suggest you look at some good touring plans (like the easywdw.com site or tour guide mike). Show up early in the morning at rope drop and get fast passes and do the major rides - have lunch - take a break at your hotel - and go back at night for a few more rides, dinner, shopping, etc. If you have questions about getting the GAC just let me know. There are definitely times when it comes in handy.

You will LOVE the conference - it is the most amazing experience you will not want to go home afterwards. You'll learn so much - nothing like being around 4000 people who know EXACTLY what you're going through - LOL!

 

[Rapunzel]

Thanks for the info! I'm going to PM you with my email! Would love to meet up!

 

[buffettgirl]

Have a good time. A few posts back (Maybe a week ago) we had a lot of tips for travelling with type 1 - just do a quick search. You'll find the thread.

 

[Dismom55]

If you eat any table service meals, let them know when you book, then remind them when you arrive. When we were there in 09 they sent a chef out to talk to my mother and he went over the menu with her and told her what was good for her to order and what to stay away from as well as made sure they had a sugar free desert, one restaurant even had to sent to the central kitchen to get one for her as they did not have one for her.

Disney is very accomodating when it comes to special diet needs. We were impressed.

 

[daneenm]

If you eat any table service meals, let them know when you book, then remind them when you arrive. When we were there in 09 they sent a chef out to talk to my mother and he went over the menu with her and told her what was good for her to order and what to stay away from as well as made sure they had a sugar free desert, one restaurant even had to sent to the central kitchen to get one for her as they did not have one for

a word of caution, you may not have a good experience with SF desserts for your T1D child. These often have a similar number of carbs as the regular dessert and the sugar substitutes give many children intestinal trouble. By the time you go, you will likely know if this is the case for your child or not.

People handle this very differently and what works for one family may not work for everyone. We never tell the chef that DS has T1D. We do not feed him sugar free and we are quite adept at guessing the carb content of most foods he eats. So, we do as we do at restaurants at home estimate his cabs and move on. It seemed to work fine for us.

The most important thing in my opinion is to test often. Lots of factors will effect her BG (for DS it is heat, excitement, extra walking,etc), so staying on top of them will make things a lot easier for you.

We found our trip to WDW a lot easier than I expected it to be. I was so worried, and we were 5 years post dx, so we were pretty well versed in T1D care. I just thought there was so much to worry about. We were well prepared with snacks and supplies, tested a lot and had a fantastic time!

Have a terrific trip!

 

[Dismom55]

This is so true, but in my mothers case she will not eat any sweet that is not sugar free and was very concerned about hidden sugars in foods she was not used to eating. She was in a wheel chair and not walking off any extra consumed carbs in her case. So talking about the sugar content was helpful as it did help her steer clear of some things we did not even think of to stay away from that she would have normally eaten at home, so we were glad we asked. Granted the kids menu is less diverse.

Oh yes, I too am diabetic and I try to steer clear of artificial sweeteners, I prefer a more natural diet and try to limit my sugar/carb intake as necessary. Mom and I have a whole different take on diabetes.

 

[Rapunzel]

Thank you so much for the input!

I let her eat; like any normal child as long as she has the insulin to cover it. I'd rather her not eat sugar free stuff (unless she's on a high, then I allow Sugar Free Jello).

She'll "celebrate" (if you can call it that lol) her 2 year D-aversary while we're there. I've been reading it's just going to be a lot of guessing because they don't provide carb counts? Really?!!

 

[buffettgirl]

If you eat any table service meals, let them know when you book, then remind them when you arrive. When we were there in 09 they sent a chef out to talk to my mother and he went over the menu with her and told her what was good for her to order and what to stay away from as well as made sure they had a sugar free desert, one restaurant even had to sent to the central kitchen to get one for her as they did not have one for her.

Disney is very accomodating when it comes to special diet needs. We were impressed.

no no no . do not do this with a child. They are not doctors, they have no clue. I'm sure your diet works for your mother and you, but it's not what is standard with kids now. and telling Disney about it does zero.

to the OP - carry a calorie king book - or get an app on your phone. Disney refuses to provide carb counts on it's food (which is what would really be helpful) and when asked for "diabetic friendly" food, they're likely to bring your child a giant pile of fruit.
We avoid all "sugar free" foods as they 1) have carbs in them and 2) usually create tummy trouble for kids.

Honestly, we have more trouble with all the fat in the foods but usually it offsets the lows from walking around all day, so it all works. A mickey bar before bed - usually seems to be the right combo of fat/carbs to starve off lows at night too. Bonus.

Most of the restaurant food is about the same as what you'd get at home, so as long as you have a carb app or calorie king book you'll be fine.

Test, test and then test again. We also make use of longer lines as testing / resting spots if we encounter lines. We've never had to leave a line due to a low (but have for a crabby high) and we're simply given a FP to return. no issue.

 

[ttintagel]

The most important thing in my opinion is to test often. Lots of factors will effect her BG (for DS it is heat, excitement, extra walking,etc), so staying on top of them will make things a lot easier for you.

Nthing this! I don't know whether its the heat, the walking, the sensory overload, or what, but I found that when I'm at WDW I often have different high/low symptoms than I do in everyday life. I basically test whenever I feel strange at all, even if it's nothing like my usual symptoms. Some particularly active days at the parks I just test every time I sit down.

 

[buffettgirl]

Nthing this! I don't know whether its the heat, the walking, the sensory overload, or what, but I found that when I'm at WDW I often have different high/low symptoms than I do in everyday life. I basically test whenever I feel strange at all, even if it's nothing like my usual symptoms. Some particularly active days at the parks I just test every time I sit down.

totally. TOTALLY. we've also done 'test every time we get in line'. Dh would swing around, I'd open the backpack, ds would stick out his finger and we'd be done within 10 sec. without ever taking anything out of our bag LOL.

also, to the OP, carry plenty of glucose tabs (or whatever your preferred low treatment is) and things like granola bars or cheese/pb crackers for the stubborn BGs that won't stay up.

 

[dragonfly57005]

Are you pumping or mdi?

 

[jbmom1b2g]

We are going to DL in June with my dd that has diabetes. But we travel 3-4 hrs every few months to go see her endo. Don't expect perfect numbers. No matter how hard we try to keep her #'s in range we always end up a little higher. Takes lots of supplies with you. When we were mdi we would take I swear whole box of needles and an extra bottle of insulin. When we go to DL I am sure I will pack extra tubing. I also read take extea meters just to be on the safe side. Have fun.

 

[doug12volt]

Hi everyone,
I just started searching this forum so I apologize in advance if this repetitive. My 9 year old son was just diagnosed with T1D on 4/2/12, so this is all new and a little overwhelming. We already had our trip planned in July. I was hoping to find some kind of pdf file of the menu items at DW with the carb counts. Its looking as though this doesn't exist? Any tips or suggestions on meals and carb counting within the park would be appreciated. Reply or contact me directly. Thank you.
Doug

 

[buffettgirl]

Hi everyone,
I just started searching this forum so I apologize in advance if this repetitive. My 9 year old son was just diagnosed with T1D on 4/2/12, so this is all new and a little overwhelming. We already had our trip planned in July. I was hoping to find some kind of pdf file of the menu items at DW with the carb counts. Its looking as though this doesn't exist? Any tips or suggestions on meals and carb counting within the park would be appreciated. Reply or contact me directly. Thank you.
Doug

Hi doug, there are no carb counts on any foods at disney, unless the food is prepackaged. Best options are to carry a calorie king book with your or get an app on your phone (I like calorie counter by fat secret). Being new, you might want to find a small travel scale or bring measuring cups.

 

[Selket]

If you're going in July the largest gathering of people (adults and children) with type 1 is being held this year just after July 4th at the Marriott near WDW: http://www.childrenwithdiabetes.com/activities/Orlando2012/ There are lots of seminars geared towards families of newly dx'd children and a fantastic program for the kids. Next year the conference is at a WDW hotel - FYI.

Sorry about your son being dx'd. Make sure to check out the Children With Diabetes website: http://www.childrenwithdiabetes.com There are also a lot of threads on the forums there just dealing with visiting Disney with type 1.

Getting a Salter nutritional scale when my son was first diagnosed really helped me learn to count carbs - and be able to "eyeball" amounts when at restaurants without using the measuring cups and scales. No one really wants to get a nice hot plate of food and then put it in measuring cups but I know I did that at the beginning (but my kid was 2). Unfortunately you have to learn to eyeball somehow though so the Salter scale is a good way of doing it - and learning that a cup of rice is X carbs, a cup of pasta is X, hamburger buns are typically this or that depending on the size, etc.

The ice cream treats and some of the prepackaged treats have the carb counts on them so it might be a good way to get treats if your child likes those things. Otherwise let him eat like the rest of the family - or make the rest of the family eat like him for this trip - whichever works best. It IS hard that first year learning and there is nothing wrong with being conservative with your eating this soon after diagnosis.

Hi everyone,
I just started searching this forum so I apologize in advance if this repetitive. My 9 year old son was just diagnosed with T1D on 4/2/12, so this is all new and a little overwhelming. We already had our trip planned in July. I was hoping to find some kind of pdf file of the menu items at DW with the carb counts. Its looking as though this doesn't exist? Any tips or suggestions on meals and carb counting within the park would be appreciated. Reply or contact me directly. Thank you.
Doug

 

[Chloesmom]

We never tell the restaurant that DD is T1. We did at first and all that did was draw almost awkward attention to her and she was only 6 then so it made her uncomfortable. The chef cannot do much for you since most type 1 kids dont eat sugar free desserts, etc. The only time this helped us at all was that we got moved to the front of the line when they ran behind on ADRs at a few places.
Every kid is different and what works for them is different. We have found that eating a TS lunch and dinner really helps her to cool off and settle down and helps keep her sugar in control. We go enough and long enough that the little extra time involved to sit down and relax when we eat doesnt keep us from seeing what we want.
And as others have said test test test... then test some more. Oh.. and bring twice the supplies you think you will need. If it can happen it will. I have had meters break, pumps decide to go on vacation also, insulin frozen in the tiny fridges... so I cover all the bases now.

 

[vanderty]

My six year old is newly diagnosed as well, late April. His highs and lows are frequent and fast. My question is how to treat a low in line with the rest of the family in tow? Due to a metabolic condition his lows go low (37 to 50) and he shakes violently. We would have to get out of line to treat, and then do we have to wait in the entire line again? Also, how do you get out of line, in the one direction path lines (ex. Soarin)?

Thanks we are all so overwhelmed at our house.

 

[buffettgirl]

My six year old is newly diagnosed as well, late April. His highs and lows are frequent and fast. My question is how to treat a low in line with the rest of the family in tow? Due to a metabolic condition his lows go low (37 to 50) and he shakes violently. We would have to get out of line to treat, and then do we have to wait in the entire line again? Also, how do you get out of line, in the one direction path lines (ex. Soarin)?

Thanks we are all so overwhelmed at our house.

My best suggestion is to check before entering lines, treat moderately, and then you don't have too many surprises. Then, during a super long line, we find if we have a low we are usually shaded, we're usually not moving fast, so we can sit and wait it out, or slowly move along and treat. You should always have your own glucose with you (either glucose tabs or juice) and you should always have a longer acting carb with you (like a granola bar, or pb crackers). You shouldn't need to leave line to treat. IF your child were having a low blood sugar near the end of teh line and you didn't feel like you could safely ride, then you should mention that to the CM at the end of line. Chances are they will have a solution for you (FP to return most likely, or offer you the option to parent swap)

You can certainly bring your concerns to guest services and they may have an option that would work for you but truthfully, line waiting time is best handled with good use of FastPass and a good touring plan. Line waiting should be a minimal part of your day, it's all the other stuff that happens outside the line that is more problematic usually.

 

[tami82]

be sure to always have the juice boxes or jellybeans on hand while in disney. My daughter is 8 and type 1 since she was 18 months old. With all of the walking around at disney can cause unexpected low BS. Make sure she eats snacks often and balance protein w/carbs. My d is on an insulin pump and we dont refrain her from eating anything we just simply give her a bolus for what she eats. You cannot restrict a kid this young carbs she needs to be a normal child. I find that i dont give a whole correction for foods eaten as the activity offsets the high blood sugars. If you were to eat only proteins would not be good combination with all of the walking & activity and you risk going low (i experienced this last year as my daughter had her first seizure on vacation unfortunately). As above poster said get the calorie king book and figure it as best you can. Once you get used to everything you should be able to eyeball things and estimate a carb count. Also bring two of everything with you for backup.
Does your daughter know when she goes low? Luckily mine tells me her "legs are tired" so i wont even check her but give her a bunch of jelly beans if timing is not good to check her. Do check often every hour and before long line rides