PDA

View Full Version : WOW! It's been a while~Traveling to DW with Diabetes


Rapunzel
05-02-2012, 04:49 PM
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
05-02-2012, 08:45 PM
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!:thumbsup2

Rapunzel
05-02-2012, 11:02 PM
Thanks for the info! I'm going to PM you with my email! Would love to meet up!

buffettgirl
05-03-2012, 08:18 AM
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
05-03-2012, 10:20 PM
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
05-03-2012, 11:36 PM
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
05-03-2012, 11:47 PM
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
05-04-2012, 08:52 AM
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?!! :confused3

buffettgirl
05-04-2012, 09:02 AM
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. :lmao:
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
05-04-2012, 09:24 AM
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
05-04-2012, 02:00 PM
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
05-04-2012, 07:27 PM
Are you pumping or mdi?

jbmom1b2g
05-04-2012, 07:38 PM
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
05-05-2012, 01:37 PM
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
05-06-2012, 08:41 AM
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
05-06-2012, 09:02 AM
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.:goodvibes



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
05-10-2012, 10:34 PM
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
05-13-2012, 09:11 AM
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
05-14-2012, 08:30 AM
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
05-15-2012, 02:21 PM
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

Rapunzel
05-15-2012, 04:49 PM
Thanks so much everyone! I never thought about jelly beans :upsidedow I think maybe I'll grab a big bag of skittles to take with us too.

tami82
05-15-2012, 05:41 PM
Yes skittles will work also. Years ago i came across a little plastic jelly belly dispenser for which we put the fast acting candies in so fits easily into my d's diabetes bag or in her pocket if need be. Maybe you can find something similar and just refill as needed.

fcanal
05-24-2012, 12:56 PM
Hi!
My 10 yo DD is T1. We have been to Disney a couple of time since diagnosis, but it's always been in the cooler months. We leave tomorrow, and it's the first time we have been to WDW in the heat with T1. Any suggestions about keeping supplies cool? Do you bring an insulated bag? She is on a pump, so I don't normally bring insulin with us to the parks, but I am concerned about the glucagon staying cool.
We will be getting the Guest Assistance pass, because heat and activity causes her BG to plummet. We always have snacks for treating lows, and she is very good about testing more often.
Even with T1, Disney is a magical place! :love:

ttintagel
05-24-2012, 02:07 PM
Hi!
My 10 yo DD is T1. We have been to Disney a couple of time since diagnosis, but it's always been in the cooler months. We leave tomorrow, and it's the first time we have been to WDW in the heat with T1. Any suggestions about keeping supplies cool? Do you bring an insulated bag? She is on a pump, so I don't normally bring insulin with us to the parks, but I am concerned about the glucagon staying cool.
We will be getting the Guest Assistance pass, because heat and activity causes her BG to plummet. We always have snacks for treating lows, and she is very good about testing more often.
Even with T1, Disney is a magical place! :love:

I use the Frio insulating wallet for travel, and then leave the insulin vial in the fridge in the hotel room.

I've never thought much about the glucagon. I usually just throw it in my bag, but then again, I've never ended up needing it. I guess an insulated case couldn't hurt.

buffettgirl
05-24-2012, 04:48 PM
I've never had a problem with glucagon - i just toss it into the bag. And we're always there in the summer.

Don't be surprised if you don't get anything for your GAC. Most lines are shaded or inside and most "alternate" entrances no longer exist as most of the lines are mainstreamed- especially for the purposes you need. However, the biggest challenge is all the time you're not in line - the heat is still there - and a GAC isn't going to help with that. So just don't be surprised if Guest Services doesn't give you anything helpful.

Keep enough glucose tabs on you - and things like granola bars. You can't really avoid the heat, but try to minimize the middle of the day walking around.

daneenm
05-24-2012, 05:01 PM
Hi!
My 10 yo DD is T1. We have been to Disney a couple of time since diagnosis, but it's always been in the cooler months. We leave tomorrow, and it's the first time we have been to WDW in the heat with T1. Any suggestions about keeping supplies cool? Do you bring an insulated bag? She is on a pump, so I don't normally bring insulin with us to the parks, but I am concerned about the glucagon staying cool.
We will be getting the Guest Assistance pass, because heat and activity causes her BG to plummet. We always have snacks for treating lows, and she is very good about testing more often.
Even with T1, Disney is a magical place! :love:

My son's BG also plummets in the heat. We have done WDW in August and DL in all seasons and have never used a GAC. We did pick one up on our first trip to DL post DX (he was 3), but wound up not needing it. Planned to get one in WDW, but decided to try first without, so we wouldn't have to wait in line for it, and again found we didn't need it. Our preference is to arrive early, use FastPasses wherever they are available and take a break between lunch and dinner. It has worked extremely well for us, but of course every family is different.

We did not keep the Glucagon cold in our whole 12 days in WDW (August) and didn't seem to have a problem with it - sadly we did have to use that one for a low emergency a few months after we go home.

My best advice is test, test, test and then test again. About every hour worked for us. If you stay on top of the BGs they are much easier to manage. Always have your supply bag with you - glucose tabs, glucagon, packaged snacks, juice, etc. That way you can treat wherever you are.

I was so worried before we visited WDW specifically because of the heat, and it really was not a whole lot harder than any normal summer day when he is running around. Hope you have a great trip!

fcanal
05-24-2012, 06:38 PM
Thanks for the responses! I had never thought about carrying glucagon in the heat until I read somewhere that it was supposed to be keep cool.
We got a GAC when we went at Christmas '10, and never had to use it. It will depend on how much of a hassle it is to get, and will only use it if absolutely necessary.
My daughter always has her pouch that has her meter, strips, pricker, glucose tabs, and glucagon in it. Also, she will not be without a water bottle. We are very lucky, because she senses her lows, and even senses when she is going low. She is very diligent about testing.
Her BGs are always really good when we travel, but like I said, we haven't been to WDW in the heat.
Thanks again!!!

buffettgirl
05-24-2012, 06:46 PM
sounds like you'll be fine really. :) And mickey bars really have the magical combo of carbs and fat. ;)

Rapunzel
05-24-2012, 07:08 PM
I got all of my DD's Diabetes supplies from school today (tomorrow is their last day for an hour..) I forgot how much stuff we had there!

I'm getting really excited. I bought a insulated cooler with a zipper top from 31 (a friend sells them) and that should be here tomorrow.

I'm debating if I should bring in an extra bottle of insulin to the parks to keep at first aid or if I should just leave it in our room at the hotel. She is on a pump, but what if her infusion set gets pulled out (it's been pulled out from random things before, or once when she was over zealous with her shorts after she used the washroom).

I really dislike this disease, it's so random. Yesterday I couldn't seem to keep her above 75, today I can't get her below up 300. :confused:

buffettgirl
05-24-2012, 07:23 PM
I got all of my DD's Diabetes supplies from school today (tomorrow is their last day for an hour..) I forgot how much stuff we had there!

I'm getting really excited. I bought a insulated cooler with a zipper top from 31 (a friend sells them) and that should be here tomorrow.

I'm debating if I should bring in an extra bottle of insulin to the parks to keep at first aid or if I should just leave it in our room at the hotel. She is on a pump, but what if her infusion set gets pulled out (it's been pulled out from random things before, or once when she was over zealous with her shorts after she used the washroom).

I really dislike this disease, it's so random. Yesterday I couldn't seem to keep her above 75, today I can't get her below up 300. :confused:

I leave the insulin in the room. IF an infusion set gets pulled out you can simply replace the site part and just reuse the old tubing and reservoir. If something were to happen to the tubing then that would be a different story, but we've been pumping since back in 2006 and we've never had a 'tubing' issue. Disregard if you're podding since then you'd need to refill and replace the whole thing and in that case I WOULD carry insulin. I also tend to toss one or two syringes in my bag just in case. In an extreme emergency (like a pump malfunction) I can at least pull insulin out of the reservoir.

And yeah, 75 to 300 days - been there, done that, we all have. It's maddening.

Sadie22
05-24-2012, 09:34 PM
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.

I have Type 2. I had downloaded the Calorie King app to my iPhone, but it has a lot of either outdated or restaurant menus from other regions. I'm not sure which, but Friendly's isn't in there and the Applebee's menu doesn't match any Applebee's near here. I'll try the FatSecret Calorie Counter. I've downloaded it. There's my weight right on the opening page now. :)

Thanks for suggesting this app! I really would like to take about 60 fewer pounds to Disney next year.

Good thoughts to all of you parents and children dealing with diabetes. :grouphug:

Rapunzel
05-25-2012, 01:41 AM
I leave the insulin in the room. IF an infusion set gets pulled out you can simply replace the site part and just reuse the old tubing and reservoir. If something were to happen to the tubing then that would be a different story, but we've been pumping since back in 2006 and we've never had a 'tubing' issue. Disregard if you're podding since then you'd need to refill and replace the whole thing and in that case I WOULD carry insulin. I also tend to toss one or two syringes in my bag just in case. In an extreme emergency (like a pump malfunction) I can at least pull insulin out of the reservoir.

And yeah, 75 to 300 days - been there, done that, we all have. It's maddening.

Ahhhh good ideas! I'll do that, I normally carry a syringe or 2 in my purse at all times as a just in case, I didn't think about pulling it from the reservoir! She has the One Touch Ping, no pod. :)

buffettgirl
05-25-2012, 07:42 AM
oh I just looked at your PTR...I love that all the little girls have their pink pings!!

And IMHO if you're more worried about how you're going to stay IN the park during a pump issue then you've succeeded in D parenting 101 "Never let the D stop you or your child." and you'll be just fine!!!! No matter what comes up. I always figure that it's only going to take me about an hour to get back to our hotel and in that time, I can be on the phone with the pump company arranging a new pump for the next day. Which reminds me - write down the PHYSICAL mailing address of your hotel and keep it where you can get to it quickly. You want the address that will get a package to the front desk, which may not be the same as the mailing address. :)

melancholywings
05-25-2012, 05:22 PM
Just wanted to send hugs to all the parents of newly DX T1D kids. DD (11) was diagnosed 2 years ago. We have not done DW yet (have done DL and a cruise). But the heat always makes her numbers sky high. We want to do DW next summer but the heat worries me.

We are on the Omnipod and when we travel I usually keep a 1/4 filled insulin vial with me to carry into the parks. So that I'm not carrying and possibly spoiling the whole vial. We have had to do pod changes in the park and for DD stopping the fun to go back to the room would have upset her.

I've had mixed luck with the Frio bag. Last summer ours leaked all over her kit.:crazy2:

We bought her an ipod touch and downloaded the Calorie King app on to it. This has been amazing at promoting independence because she can look up carb counts on her own and she keeps it with her kit.

ttintagel
05-25-2012, 06:17 PM
Just wanted to send hugs to all the parents of newly DX T1D kids. DD (11) was diagnosed 2 years ago. We have not done DW yet (have done DL and a cruise). But the heat always makes her numbers sky high. We want to do DW next summer but the heat worries me.

We are on the Omnipod and when we travel I usually keep a 1/4 filled insulin vial with me to carry into the parks. So that I'm not carrying and possibly spoiling the whole vial. We have had to do pod changes in the park and for DD stopping the fun to go back to the room would have upset her.

I've had mixed luck with the Frio bag. Last summer ours leaked all over her kit.:crazy2:

We bought her an ipod touch and downloaded the Calorie King app on to it. This has been amazing at promoting independence because she can look up carb counts on her own and she keeps it with her kit.

I was due for a new pump when I was planning my last Disney trip, and specifically chose the Omnipod over a new Minimed model because I didn't want to deal with tubing while navigating the plane, resort, etc. Plus, swimming is SO MUCH EASIER. I've been very happy with it.

I haven't tried the Calorie King yet, but the food library that came loaded on the Omnipod PDM has been quite handy.

Sadie22
05-25-2012, 06:26 PM
The Calorie King desktop computer software is okay. I've been using that for about four years. The Calorie King smartphone database that I have does not sync with my computer. It's just a food database, and an incomplete one. The FatSecret Calorie Counter buffetgirl mentioned syncs with something online (I haven't done that part yet). I'm trying it out for the first time today. It allowed me to enter food while on the go, and that's a big plus for me. There's my weight staring at the me on the start-up screen, too.

daneenm
05-25-2012, 11:16 PM
I use Restaurant Nutrition on my iPhone. This specifically tracks chain restaurant menu items. I find it very current and they are adding new places all the time.

Grammie3
05-28-2012, 08:27 PM
I just wanted to stop in here and say I find this thread extremely informative as I am a Nurse Clinician, CDE and have recently moved from primarily adult diabetes education to the pediatric setting and will be working very close with Type 1 new and returning patients to our clinic.

I am also a Disney Fanatic and am learning a lot from all of you here on managing diabetes while in WDW.

I can also add for those who have smartphones a free app "Go Meals" sponsored by Sano Aventis, it is based on the Food Calorie/Carb King lists and the really great feature of the app is there is GPS navigation that will give you nearby food options, the menus and the carb information of their foods. This should help with the meal planning needs found while traveling for you! Hope this information helps you out.

You have been given great tips, I would emphasize that the heat can be a BG dropping event and that also it is extremely important to stay hydrated as even those non-DM persons while in WDW can become dehydrated but, it is even more of a risk for those with DM.

Also, keeping extra supplies is a super idea, along with all the recommended snack survival ideas! But, most of all relax and enjoy yourself and your DD will also enjoy herself:thumbsup2

melancholywings
05-29-2012, 06:22 PM
I was due for a new pump when I was planning my last Disney trip, and specifically chose the Omnipod over a new Minimed model because I didn't want to deal with tubing while navigating the plane, resort, etc. Plus, swimming is SO MUCH EASIER. I've been very happy with it.

I haven't tried the Calorie King yet, but the food library that came loaded on the Omnipod PDM has been quite handy.

I'm glad to hear you're loving the pod too! We went to DL with it last trip and even did a pod change while waiting in line for TSM.
Calorie King is fantastic and the app has a large library. It's got a typical search feature which allows her to carb count faster than the book...she's 11 and hates slowing down for anything related to D. Plus it's free I believe.

We're doing DW in the summer (we usually go in the spring) and I'm worried about the heat. DD goes HIGH when she's hot.

elzamom
05-29-2012, 10:50 PM
My ten year old daughter has t1d. This will be our second trip since her diagnosis, we'll be there June 27th until July 4th. Last trip she didn't have her animas ping yet and we were using those frio packs to keep her insulin cool. I kept over filling it and it was a pain to get the bottle out.

We had to check her at midnight and 3am due to overnight lows. So our days of over indulging with wine and beer at the piano bar or Epcot are long over. We needed to be alert to help her! Even though we cut back on her lantus by half and were giving her ice pops without coverage she would drop fast and need to sit and rest for a bit. I have fitnesspal on my phone and I use it to look up carbs for her.

Were going to Universal July 4th for a few days and I'm worried about their no bag rules in line. She wears a too sweet boutique pump and separate meter pouch on a waste band. Anyone have any idea if she can wear it on their rides and lines? I know we need to detach and suspend for safety due to strong magnets on rides.

buffettgirl
05-30-2012, 03:53 PM
My ten year old daughter has t1d. This will be our second trip since her diagnosis, we'll be there June 27th until July 4th. Last trip she didn't have her animas ping yet and we were using those frio packs to keep her insulin cool. I kept over filling it and it was a pain to get the bottle out.

We had to check her at midnight and 3am due to overnight lows. So our days of over indulging with wine and beer at the piano bar or Epcot are long over. We needed to be alert to help her! Even though we cut back on her lantus by half and were giving her ice pops without coverage she would drop fast and need to sit and rest for a bit. I have fitnesspal on my phone and I use it to look up carbs for her.

Were going to Universal July 4th for a few days and I'm worried about their no bag rules in line. She wears a too sweet boutique pump and separate meter pouch on a waste band. Anyone have any idea if she can wear it on their rides and lines? I know we need to detach and suspend for safety due to strong magnets on rides.
not sure about universal, but we've never detached for any rides at Disney. Wait, we MAY have detached for RnR. but now I can't remember.

However, there is no way in heck I'd allow her to be without her pump and meter in line at Universal. Surely they allow such things?

Selket
05-30-2012, 08:09 PM
Were going to Universal July 4th for a few days and I'm worried about their no bag rules in line. She wears a too sweet boutique pump and separate meter pouch on a waste band. Anyone have any idea if she can wear it on their rides and lines? I know we need to detach and suspend for safety due to strong magnets on rides.

We went to Universal about 2 years ago and my son wears a belt with his pump in a pouch and that was fine. Seems like I kept his meter and some tabs with me through the lines - maybe in a pocket. We didn't detach or suspend for any rides but the only coaster he went on there was The Mummy - so none of the big coasters.

OwlDisneyGirl
06-03-2012, 10:15 PM
DH is T1 and I think he's only ever disconnected once for a ride (I'll have to ask him - it may have been Mission Space?).
The first time we went, he wasn't yet on a pump. Ever since then, he's been pumping. We don't carry insulin with us during the day unless he knows that he will start to run low that day. When we do, we go straight to first aid and they store it there.
Also, we don't use the glucagon as it takes about 10-15 minutes to get the liver to release the glucose. On the advice of his endo (and numerous EMT's/paramedics), we use cake icing gel. It comes in small little tubes and can be rubbed on his gums (even if he's unconscious) and it goes straight into the bloodstream. Works very quick and no risk of vomiting.
The heat does a number on his blood sugars. They will end up all over the place. We've been fortunate for help from CM's (and other guests in line) when there was an issue (thinking of Snow White - the CM in the outside shop next to the line ran over a Coke for us).
We always pick up the little extra monitors that are the size of a vial of strips. They're small and very easy to carry with you. Just that an a lancet to take in the park.
Now, the big issues we have had. The first time I ever didn't double check how many pump changes DH packed and he ran out of them!! The company overnighted them to us - he had to take shots that time to save the reservoir for his basal until the next day. I always have him pack 1 change per day + 2 more. He has had to change some trips every day to every other day.
We did end up in the hospital one trip. The last night there, he became very ill in line for the bus back to the room. Transportation was great and ended up sending a van to return us to our hotel (which was good since we had to stop on the way back for an ambulance to come check on him - we should have had them take him to the ER then, but he thought he was feeling better after getting sick again). We had to drive around that night (after midnight) to find peanut butter and a loaf of bread - didn't realize I could have called the front desk and they would have gotten that for us. Then, he ended up sick all night and we called the front desk in the morning. They dispatched the ambulance and he was in ICU at the hospital in Celebration, FL. It was a crazy time but Disney worked with us to delay our checkout and help me get packed and out of the room (with 2 small kids).
As far as GAC goes, we never received or used one with T1. It would have been helpful, but he didn't have a need where he couldn't wait or something else. (We have used them for another family member.)
And, as others have suggested, we have never mentioned that he has T1 for a restaurant (did with the hotel for our first visit so that we would be guaranteed a fridge in the room - as they didn't back then and if you got one they cost, but not for T1's). We mentioned it once on a cruise (non-Disney) and it made for such a hassle and foods that were sometimes worse in how they treated his blood sugars that we found it better to eat like others, and cover with the insulin.

buffettgirl
06-04-2012, 07:49 AM
good tip about the sites! Especially for the kids and the pools, I tend to pack 2 per day, just in case. I also bring something extra sticky like skin-tac (or mastisol) which helps with the heat/sweat/pool.

I had to read this line like 3 times " We don't carry insulin with us during the day unless he knows that he will start to run low that day." until I got that you meant "unless he knows that he will start to run low IN HIS PUMP that day." LOL.

OwlDisneyGirl
06-04-2012, 08:09 AM
Yes, I meant unless the insulin in his pump might run low! Sorry!
:confused3

buffettgirl
06-04-2012, 08:18 AM
Yes, I meant unless the insulin in his pump might run low! Sorry!
:confused3

I was thinking 'boy, I don't want to be around when they give insulin for a low" hahahah...

OwlDisneyGirl
06-04-2012, 11:12 AM
I was thinking 'boy, I don't want to be around when they give insulin for a low" hahahah...

That would be a nightmare!!! DH had a bad low at home once and began messing with his pump. It started beeping and I was sure he'd given himself a bolus! Thankfully he didn't!

buffettgirl
06-04-2012, 11:28 AM
That would be a nightmare!!! DH had a bad low at home once and began messing with his pump. It started beeping and I was sure he'd given himself a bolus! Thankfully he didn't!

omg. I worry about that with my son. He has a sensor so every once in a while it will alarm at night and I'm always afraid that in his effort to ignore the alarm he'll bolus himself on accident. I hate that the alarms aren't loud enough (but we've been testing out this mysentry thing from MM that links to the CGM/pump and I am adoring it. Only issue is that it's 2500. I keep thinking "$2500 for peace of mind??" I'm sure that's what MM was banking on parents (wives?) saying...:rotfl:

Rapunzel
06-04-2012, 12:23 PM
We adjusted basal rates and I:C ratios last Weds at our endo appt. Now Lauren is waking up low. Yesterday she was 50 :eek:, today she was 68. I think I'm going to go back down on the middle of the night #'s.

buffettgirl
06-04-2012, 12:28 PM
We adjusted basal rates and I:C ratios last Weds at our endo appt. Now Lauren is waking up low. Yesterday she was 50 :eek:, today she was 68. I think I'm going to go back down on the middle of the night #'s.

well that's scarypants. (we're having the opposite. puberty hell I think. the insulin at night is like water. And enough to down a horse. Still he's high. sigh)

OwlDisneyGirl
06-04-2012, 02:16 PM
DH's endo said a new pump & sensor should be coming out in the next 12-18 mos. It should reduce basals for lows (and maybe stop altogether if necessary) and then return to normal as the BS rises.
That would give me such peace of mind!

buffettgirl
06-04-2012, 03:11 PM
DH's endo said a new pump & sensor should be coming out in the next 12-18 mos. It should reduce basals for lows (and maybe stop altogether if necessary) and then return to normal as the BS rises.
That would give me such peace of mind!

sadly, that's the MM Veo which is available everywhere else in the world but hasn't even gone through the FDA process here yet. I'll eat my hat if it actually comes out in 18 months. Plus, the sensor technology that Minimed is using is just so random at this point (plus, not surprisingly, MM has better sensors and they are in use in the the rest of the world but also haven't passed FDA approval yet. I'm guessing we'll see the better sensors here before we see the Veo get approved. The FDA is nuts about this whole low suspend feature.

Frustration doesn't even come close.

OwlDisneyGirl
06-04-2012, 03:35 PM
DH may not have "accurately" related all of the info!
I know they started the discussion about the MM sensors. DH won't wear his sensors and he said the endo thought these would be better for him. I think they may have discussed the new pumps and he "lumped" them together when he relayed it back to me.

buffettgirl
06-04-2012, 04:18 PM
DH may not have "accurately" related all of the info!
I know they started the discussion about the MM sensors. DH won't wear his sensors and he said the endo thought these would be better for him. I think they may have discussed the new pumps and he "lumped" them together when he relayed it back to me.

what's he have for sensors (if you don't mind sharing?) the MM ones hurt! I hear the dexcom ones are much nicer, however, then you have to carry the dex receiver where the MM is on the pump. My son has the MM. He tolerates them. Nothing more than that. But as a parent, I find it invaluable for spotting trends.

OwlDisneyGirl
06-04-2012, 06:03 PM
what's he have for sensors (if you don't mind sharing?) the MM ones hurt! I hear the dexcom ones are much nicer, however, then you have to carry the dex receiver where the MM is on the pump. My son has the MM. He tolerates them. Nothing more than that. But as a parent, I find it invaluable for spotting trends.


He has the MM ones - he would never do one where he had to carry something else around. I know they're painful, I get it. It just helps so much with his A1C and gives me peace of mind against lows (and future damage from highs).
He wore them for about a year and then I noticed he would take longer and longer breaks from them.

buffettgirl
06-04-2012, 09:30 PM
He has the MM ones - he would never do one where he had to carry something else around. I know they're painful, I get it. It just helps so much with his A1C and gives me peace of mind against lows (and future damage from highs).
He wore them for about a year and then I noticed he would take longer and longer breaks from them.

totally get that. TOTALLY. we have an "arrangement" here - one week on, one week off. But he's almost 12, so I still have most of the say in what happens. ;) Doesn't work that way with a DH. LOL.

OwlDisneyGirl
06-05-2012, 12:16 AM
totally get that. TOTALLY. we have an "arrangement" here - one week on, one week off. But he's almost 12, so I still have most of the say in what happens. ;) Doesn't work that way with a DH. LOL.
I know!! I tried that arrangement. It lasted for the first week on!

vanderty
06-05-2012, 12:42 PM
OwlDisneyGirl mentioned - We always pick up the little extra monitors that are the size of a vial of strips. They're small and very easy to carry with you. Just that an a lancet to take in the park.

We are going in two weeks and are very new to Type 1 so we don't have the hand of testing on the fly - does anyone know what these are and where to get them?

Any other tips would sure be helpful. I am very nervous about this trip. DD who is 2 has chronic asthma which is hard enough to manage in the humidity and now DS who is 6 is a Type 1. I almost don't want to go.

Thanks!

buffettgirl
06-05-2012, 01:29 PM
OwlDisneyGirl mentioned - We always pick up the little extra monitors that are the size of a vial of strips. They're small and very easy to carry with you. Just that an a lancet to take in the park.

We are going in two weeks and are very new to Type 1 so we don't have the hand of testing on the fly - does anyone know what these are and where to get them?

Any other tips would sure be helpful. I am very nervous about this trip. DD who is 2 has chronic asthma which is hard enough to manage in the humidity and now DS who is 6 is a Type 1. I almost don't want to go.

Thanks!

she's probably talking about this thing:
http://www.niprodiagnostics.com/our_products/bgm_true2go.aspx
you have to get strips that go with it. A lot of teens / adults like this as it's an easy thing to carry around.

for us, it's just as easy to throw the regular meter into our bag since we're going to have other supplies anyway (you as well).

Try not to be nervous about your trip. Ask whatever questions you need to ask. We've all been there - taking that first disney with diabetes trip.

OwlDisneyGirl
06-05-2012, 08:18 PM
No, it's different. Let me see if I can find a link to them. I've always bought them at Walgreen's. Very small.

OwlDisneyGirl
06-05-2012, 08:22 PM
My bad. It is that, but when we've bought them, they came with the test strips (like the link below)
Here's the link from Walgreens.com

http://www.walgreens.com/store/c/walgreens-true2go-blood-glucose-monitoring-system/ID=prod6046688-product

Also, the sets I've bought before, the tester was the lid, they didn't give you a separate lid for the test strips. Seems they've repackaged them now, but I've still seen them the old way in the stores.

buffettgirl
06-05-2012, 08:46 PM
My bad. It is that, but when we've bought them, they came with the test strips (like the link below)
Here's the link from Walgreens.com

http://www.walgreens.com/store/c/walgreens-true2go-blood-glucose-monitoring-system/ID=prod6046688-product

Also, the sets I've bought before, the tester was the lid, they didn't give you a separate lid for the test strips. Seems they've repackaged them now, but I've still seen them the old way in the stores.

you know, that's EXACTLY what I thought too, but then when I tried to google and didn't see them I thought maybe I had just remembered them incorrectly.

And the other thing I recently noticed, meters don't come with 10 free strips anymore LOL. I used to tell newly diagnosed families that in a pinch, to just grab a meter at CVS or Walgreens on sale for dirt cheap and use the vial of free strips if they ever found themselves in a situation where they broke a meter or lost one, etc. Now, they don't even include a sample. LOL.

OwlDisneyGirl
06-05-2012, 09:19 PM
Tell them to grab the one I linked to - it does include 10 test strips (and just $9.99).

Rapunzel
06-05-2012, 09:40 PM
I'm going to just throw DD's "kit" in my bag. Her meter is also a remote for insulin too, really really awesome especially because she loves wearing dresses, don't have to lift the dress and embarrass her, just use the remote.

It's also fun at home to see how far she can run from me with a fist full of french fries while I try to give her a bolus from the kitchen! Kidding!

buffettgirl
06-05-2012, 09:48 PM
Tell them to grab the one I linked to - it does include 10 test strips (and just $9.99).
totally going to have to do that now!

I'm going to just throw DD's "kit" in my bag. Her meter is also a remote for insulin too, really really awesome especially because she loves wearing dresses, don't have to lift the dress and embarrass her, just use the remote.

It's also fun at home to see how far she can run from me with a fist full of french fries while I try to give her a bolus from the kitchen! Kidding!
ROFL. those little girls do love their Pings. when my son was first diagnosed back in 2005 we met up with another family and they had a little girl, about 4, and she thought it was extremely hysterical to walk up and flash everyone while she was getting bolused. Her mom kept her pump under her dress in a pump pack, away from her hands, but she knew that she could lift it up anytime she ate and boy did she take advantage of that. I told mom that she had a future calling as a stripper. LOL.

levenhopper
07-07-2012, 03:09 AM
I really dislike this disease, it's so random. Yesterday I couldn't seem to keep her above 75, today I can't get her below up 300. :confused:

I'll second that. The only reason I'm still up (3:09AM) is I'm waiting to come down from 278 so I can go to bed.