WDW and kids w/T1 diabetes and asthma/food allergies. Help needed!

[DumboDash2006]

Hi, I'm quite new to this site and am hoping for a little feedback.

In August, I will be going to WDW with my dd (6yrs) who has T1 diabetes. Just diagnosed in Jan. We will also be traveling with my mom, sister and my nephew (5 yrs) who has severe asthma and food allergies (egg, tree nuts and milk, though outgrowing the milk).

I don't think my nephews food allergies should be too much of a problem just because he's a very picky eater and only eats about a dozen or so foods which don't usually contain those allergens anyway. But we'll be asking just in case. His asthma could be tricky because of the heat/humidity. Any advice on dealing with that? DD also has asthma, but hers is quite mild, and I don't think will be a problem.

Dd's diabetes has me a bit concerned. She was just switched from Regular and NPH to Novolog and NPH. So at least now she doesn't have to wait to eat after her shot which could have been tricky with the timing getting seated for ADR's. Now I can at least for meals just give the shot when the food is in front of her and have snacks in my bag in case she needs food now. I know we'll have a fridge in the hotel (CBR) and can request a sharps disposal. It seems from the posts I've found here on diabetes so far, talking to the chefs won't do much good as they don't know carb counts and just suggest low/no sugar/sugar substitue items which isn't always useful. Am I correct here? I have a Calorie King book for carbs, but I still get confused on things as how do I know what ingredients are in WDW's recipes compared to what's in the book etc? And portion sizes, ugh. I still need to measure things as I'm not good at guessing. Any chance that they would measure her meals for me before serving them? And for dessert, do most restaurants have plain ice cream? I know a half cup of plain ice cream is generally 15 carbs so can figure that in. Will they allow that as a dessert on the dining plan do you think?

Any hints/tips for what snacks have what carbs? What to take with us, what to carry in the parks etc? Oh, I was thinking of taking an umbrella for the sun. Both for dd and myself lol as I don't like direct sun when it's really hot (yes, I know bad time to go, but only time we could). Will they allow us to use it in the ride lines? I figure that may help a bit to keep the heat from causing lows for her perhaps? Since she was just diagnosed in Jan and we live in MI, we really don't know how much heat will affect her yet.

Oh I'm sure there are more questions, but that's all I can think of for now...

 

[zurgswife]

Hey there. we have 2 type 1 kiddos. My DD 8 was diagnosed with diabetes by us on our Dec 2004 trip to WDW. IT has taken us 2yrs to talk to someone in the disney hierarchy about carb counts. Visit WWW.disneywithdiabetes.com we just started the site with tidbites of info an a blog from our last trip. We hope to keep expanding it. If you have info please share so we can add it to our blog.

That being said we have a few carb counts. Here is what we have.
Pizza planet pizza 56carb 2 serving
fries 3oz 20 carbs
chicken tenders 11 each
choc. mild 8oz 26 carbs
mac cheese 40carbs per cup
mickey bar 31 carbs
ice cream sandwich 36
pretzel bread sticks LeCellier 17carbs

I would have them note on your ressie that you are traveling with a type 1 diabetic and seating as soon as possible is important.

PLEASE PLEASE PLEASE ALL TYPE 1 DIABETICS NEED TO CALL AND WRITE THE FOLLOWING PEOPLE AND LET THEM KNOW HOW IMPORTANT CARB COUNTS ARE TO DIABETICS. (They told us they had never had that request before....yeah well most people don't have 2 yrs to track a live person down like we did)

Joel Shaffer
407-560-4588

Mr. Mark Jones
Walt Disney World Services for Guests with Disabilities
Box 10000
Lake Buena Vista, FL 32830

Heat isn't a problem as much as the exercise, so I won't really worry about the umbrella. She will probably require less insulin then she normal recieves. So, I would probaly plan on dropping her NPH a unit or 2 the first day and see how she fares. Highs are much safer to deal with then lows.

Sharps containers. It usually takes a number of phone calls to get an official container. I would make sure you have an empty plastic soda container handy just in case you need to dispose of sharps while you wait.

Snacks. We usually try to make sure we have juice and something the kids like with us in our backpack. There have been those times that we haven't had anything and the kids have had a serious low. We immediately find a CM and explain the urgency of the situation and we have always been help. We have been given access to CM break rooms to purchase sodas..(did you know they are only $1 in there LOL) Or even give a free soda. So, if you are having an emergency make sure the nearest CM is notified.

Please feel free to PM with any other questions or comments you have regarding visiting disney with diabetes.

It can be done. You have to do a lot more estimating then you are used to at home. Make sure you are mentally prepared for that and you will be fine.

 

[Zurg]

First what the lovely Mrs Zurg said: Call Joel on both the T1 and the food allergies. He is the guy.

Redundant stuff if a plus. Two meters, Two lancets, Twice the sharps, Two bottle of insulin etc... Put it in separate carry on bags. Keep backups at the hotel.

We have lost meters, used way more strips than we thought, lost carry on bags, you name it.

See our blog for info about the SideKick strips and meter. Small and handy to carry.

Also as a T1 parent you may want to visit the American Diabetes Association's parents web forum: http://community.diabetes.org/n/pfx/forum.aspx?nav=messages&webtag=adaparents

 

[ducklite]

I can help with the asthma.

My asthma triggers with heat--humidity is usually not a problem. I wear light weight breathable clothes, tons of SPF 30, and a wide brimmed hat. I try to stay out of the parks during my danger zone--from 2:00-4:00pm. If I have to be in the parks then, I try to do a lot of "indoors stuff"-visit the country's in Epcot for example. I do not drink carbonated beverages in the heat--the CO2 can cause lower O2 sats!

I'm very good at managing my disease and know when I'm about to hit the wall, and immediately seek a cool place to sit down out of the sun. I've met the paramedics at WDW, they are very nice and bring O2 with them. I have also gone to first aid when I've needed a cool place, and they've been very accomdating.

When I'm going to be out in the heat I do a neb treatment before I leave the house--it seems to help.

Anne

 

[Selket]

Sorry you had to join the diabetes club - a very exclusive membership however. I'm still wishing someone would show me where the pool is

My son is 4 yrs old and was dx'd with type 1 when he was 26 months. He went on the insulin pump when he was still 2 years old. We did use NPH and novolog (humalog actually - very similar insulin) before the pump. He is also extremely allergic to peanuts and tree nuts. His has issues with asthma but the heat has not been a trigger. Cold is however. He is quite a piece of work this little guy - whew!

I would just like to kindly suggest that you don't change your child's NPH dose by a "unit or two" while at WDW. I know my son's dose of NPH was very low at first because of his honeymoon period - so a unit or two might be all someone is taking as background insulin. You might want to discuss it with your pedi endo about how much you might need to lower the NPH dose. I also suggest that you look into lantus when your daughter needs insulin 24 hours a day - NPH is an extremely variable insulin in when it peaks and how strong the peak is. My son had a lot of trouble with it! (I REALLY hate NPH - just wanted you to know my bias. I know it is great for some people but if you are having troubles don't be afraid to ask about other long acting insulin choices. And do check out the insulin pump to see if it is right for your daughter).

Also see this thread: http://www.disboards.com/showthread.php?t=1075000&highlight=salter+nutritional+scale This scale helped me IMMENSELY when William was first diagnosed. It will give you the carb counts (and other info if you want - like fat, calories, etc) for several hundred foods. Common things like grapes, cooked rice, cooked spaghetti, watermelon, etc. I use this scale all the time and I've gotten rather good at now being able to eyeball an amount of pasta, rice, fruit, etc. and guessing at the carbs. They also sell a small portable (purse size) scale that you could bring with you. Then if you know that so many ounces is so many carbs you can weigh some stuff out.

Absolutely note the allergies and diabetes on all of your ADR's and contact the chefs beforehand. The counter service places should have info on food allergens but sometimes it is like trying to come to a dead stop in the middle of rush hour on the interstate - the cashier you ask will get confused, have to leave her post, find the book, and wait while you read it. Everyone behind you in line REALLY appreciates that let me tell you! Sometimes the CS places are so busy it is impossible to get to that book before you have to order (otherwise it looks like you are breaking line). That has never worked out so well for us but they do have the info.

The person to contact is Brenda Bennett of MK foods - she can email you a list of safe and unsafe foods in all 4 parks and she is a great source of advice if you have questions. I don't have her # handy but it is in several posts here.

Because of the diabetes and food allergies my son has I tend to go with 2 sit down meals a day. That way I know there is something safe for him that he will eat. They are usually able to get me anything I ask for. Plain ice cream will not be an issue most places. I can usually order things not on the menu (like a hot dog, cut up tomatoes, etc.). Note that the sugar free desserts (like sugar free brownies) probably have about as many carbs as regular brownies. No sugar doesn't mean low carbs! We give him insulin like for regular brownies.

William does have problems with the heat so you might want to consider requesting a guest assistance card from Guest Services. If you find your daughter is having problems with highs (or lows) from the heat this can help. We find the best approach is to get a good touring plan (I like tour guide mike http://www.tourguidemike.com) and get to the parks early. Try to avoid the crowded times and go back to the hotel in the afternoon for a break when it is hot.

Also check out Children With Diabetes - http://www.childrenwithdiabetes.com They run their annual conference in Florida. This year it is at Seaworld but next year they are back at WDW at the Coronado Springs Resort in July 07. The conference is for families and children and there are LOTS of great activities for the kids. It is wonderful meeting so many type 1's and their families. Many adult type 1's come too. The website has a great chat room and kept me sane during that first year!

It DOES get better. I remember our CDE in the hospital telling me that eventually I will probably know more about my son's diabetes (his individual needs and quirks and so forth) than any doctor could know and that is true. The doctors are immensely helpful of course but keep educating yourself - learn all you can. Managing diabetes is more of an art than a science. Don't ever fool yourself into thinking "if I only had the carb count his/her number would be perfect!!!" LOL! She could do the exact same thing one day to the next (eating ,exercise, etc.) and have very different numbers.

I wish you all the best! Feel free to PM me with any questions.

 

[SplashMom]

We also have two type 1 children and have found that we really didn't have any issues while travelling. As previously mentioned, we usually have at least double the supplies required (sometimes take 3 meters, strips, etc.) and have never had trouble getting a sharps container. Our kids are almost grown now (ds19 and dd16) and they both use pumps. The only issue that seems to happen is that they tend to run a bit lower so that we have to cut their insulin quite a bit because of the amount of walking they do. We usually find they are low about an hour after we get to the parks. We can suspend insulin from the pumps for a while and that quickly corrects the problem (sometimes a mickey bar helps as well!) One other thing I wanted to mention is that sometimes the sugar free items have other ingredients that tend to cause diahhrea in some people--careful to avoid this. We usually find the regular versions of many foods to be acceptable. We just try to count the carbs as close as we can. Of course, we never go anywhere with sugar tablets and juice.

Thanks for the links that were provided here! I wasn't aware of these and I will be sure to visit. Have a magical trip!

 

[Zurg]

Yes talk to your endo before making any changes to the insulin dose.

We test like mad. We were actually running low on strips and we pack a ton of extras. YBGMA (Your Blood Glucose May Vary) LOL maybe the most true statement about T1 ever made right?

On previous strips we found the insulin load decreased but this last trip our total daily dose was up for both kids. Maybe part was having pumpers who were more free to eat as they wanted but the night time basal rates were up too.

Now about the club pool.....?

 

[DumboDash2006]

I have been beyond busy today and don't have time now to reply in depth, but I will do my darndest to do so tomorrow! In the meantime, thanks for all the great info!

This place is wonderful!

 

[DumboDash2006]

Zurg and Zurgswife,

Thanks for all the info and the great web site! Actually I've been to the ADA parents site a bit and actually posted there about this and I'm one of the people you quoted on your DWD site lol! You guys have done a lot of great reasearch on this topic. Thanks for looking into this for those of us dealing with this condition. I'm definitely going to write and call the people you list.

I will definitely be taking oodles of supplies. We have a number of meters already and will likely have more by then. Might as well take it all! Especially since I will want my mom and sister to be carrying one too in case we split up and dd goes with them for a few minutes etc. For snacks I'm thinking of taking juice boxes, fruit cups, crackers with pb, and a few other things. However I think I will only carry the juice boxed and fruit cups into the parks. I should buy stock in Mott's with all the junior sized juice boxes I buy now!

That's great you got the carb counts for those foods! Hopefully enough people will call and write and they will give out more!

Thanks again!

 

[DumboDash2006]

Ducklite, thanks for the asthma info! I've never heard that about the carbonation causing the O2 levels to drop and I don't think my sister has as she gives my nephew pop quite a bit. I'll pass that on to her!

She's planning on giving him a nebulizer treatment every day before leaving the resort for the parks.

Thanks again!

 

[Zurg]

Zurg and Zurgswife,

...Actually I've been to the ADA parents site a bit and actually posted there about this and I'm one of the people you quoted on your DWD site lol! You guys have done a lot of great reasearch on this topic.....

Sing it with me! "It's a small world after all....."

 

[SueM in MN]

She's planning on giving him a nebulizer treatment every day before leaving the resort for the parks.

Thanks again!

I don't remember if it came up on this thread or not, but I just wanted to mention that you can leave things like nebulizers in First Aid in any of the parks and they have nice private cubicles/rooms where treatments can be given.

We've used First Aid in all the parks for their accessible restrooms or for DD to rest after having a seizure. The CMs there are nice and the area is cool, quiet and relaxing.

 

[reeeoga]

We went last november with our Type 1 daughter. The packaged Suger Free Brownie is 16 carbs. They are also very good, I got one . They are also large .

Daughter also ate at Pizza Planet at Studios. She ate almost all of a personal pizza by herself for lunch (12:00). By 6:00 PM her suger level was around 150. She ran everywhere (like some crazy kid at Disney ). We had more problems with lows (solved by mickey bars) than highs. The only days she was high where at AK when we saw the shows (sit down and relax type things) and our World Showcase day (go to each country and shop type thing).

Watch for Tantrums, they may indicate a suger low.

The other advice is that ALL snacks and desserts can be shared, so get the Super Large Sunday and extra spoons

 

[DumboDash2006]

Selket,

Thanks for the reply. Did your son use Lantus at all between the NPH and the pump? DD is also having a difficult time with NPH and the Endo is reluctant to try Lantus and I'm not exactly sure why. He just said he didn't think it would help with the lows she's having. She has tons of lows, almost every day and doesn't yet recognize them and often doesn't appear to have any symptoms. A few times I've seen her acting a little tired or cranky and checked and she was low, but sometimes we were just checking and she was low. And she gets checked before her morning snack and lunch at school and is often low then. Sometimes (65-80) but sometimes she will be in the 40's or 50's. She was on Regular and NPH. With that she would be in the normal range or low at first. Then she started going all over the place. High sometimes, low sometimes, though not as low as she had been. Now with the Novolog and NPH she's either in the normal range or low, lots of lows again. I'm going to try some different foods for her breakfast and see what happens and if that doesn't help, send her a small snack for school to eat an hour or so before her regular snack. But I don't think that is a really good solution either. I don't know why the dr is not wanting to try Lantus. I do know that my dh is very opposed to it because of the extra shots. But he's going to have to deal with it if that's what it takes. DD says no more shots, but I think after a few days she will be thrilled to eat what she wants when she wants (hates the scheduled eating, she's a grazer at heart). Both dh and I are hesitant about the pump, though I know my reasons at least aren't rational. It's just something we'd rather wait until she shows interest in etc. Anyway I'm so frustrated lol!

Anyway back to WDW. Thanks for the scale link. How does that work when eating out? Is it easy to wipe clean and use?

I will contact WDW about the allergens. Funny thing is my nephew is SO picky that for lunch and dinner the only things he will likely eat are grilled chicken, chicken nuggets/strips, fries, plain spaghetti, battered fish and chicken noodle soup. So I doubt we will find any of those things with his allergens, but we'll see what WDW says. For breakast he eats some fruit, bagels with jam, dry cereal and sausage. Not an adventurous eater this one lol. I can't imagine how difficult it is for you with your son being allergic to peanuts and having T1. DD has always loved her peanut butter and eats even more of it now. Thankfully none of the kids in her class at school have peanut allergies, though if they did I would just use soynut butter as she hasn't tasted the difference when I've used it.

I'm interested in seeing how dd deals with the heat this summer before we go. Hopefully we'll have a good idea before we get there how she does in the heat. But even so WDW in the heat is much different than normal daily life I imagine. We'll see if we need a GAC once we get there I guess.

I wonder if the CWD conference would be a good excuse for me to use with dh when I want to go to WDW again lol. He's not into WDW and while he wanted to go this time to see dd's reaction and was upset when he couldn't go because of work, I don't think he'll be wanting to take us any time soon. But hey, it's for dd's health...lol.

Thanks for the input and support. I was really upset the other day after several days of lows when she was switched to the Novolog from the Reg. I thought the lows may decrease, but nope. I know there is only so much I can do, but I just wish I knew the answer.

Thanks again.

 

[Selket]

DD - I will write a longer response tomorrow or as soon as I get a chance. However I wanted to note that your daughter is probably still honeymooning yes? Does she take 2 shots of NPH a day (morning and night)?

William did use lantus for about 2 months before going on the pump. If your daughter switched to lantus then someone would need to give her shots at school for lunch and for any snacks she eats.

Anyway...more later!

Carol

 

[Zurg]

I backed off on the NPH when we had lows, particularly at WDW.

I was expecting to back off in the basal rates this last trip but the numbers didn't justify if. In fact the night time basal rates were up.

On the other hand we were out of the honeymoon and I think honeymooning and exercise kicks up the failing beta cells into working a little better. I could be and most likely am wrong but that is how it seemed.

 

[Selket]

DumboDash,

I think I mentioned last night that we did use lantus before going on the pump. We were on NPH initially because when my son was first diagnosed (remember he was just 26 months at diagnosis) he was VERY sensitive to insulin and he did not need insulin overnight at all. Since lantus is a 24 hour flat acting insulin it would have been too much for him. We couldn't go on lantus until he needed background insulin 24 hours a day.

I highly recommend the book Using Insulin by John Walsh (you can find it on amazon.com). He notes that the effect of NPH can vary by as much as 30% from day to day. Since NPH has a peak he had to eat lunch when it peaked. However it never peaked the same time two days in a row for us! I was practically a prisoner at home with him because whenever it peaked I HAD to give him lunch.

If you daughter is having so many lows you really need to contact her doctor and talk about making some changes. I don't quite see a connection between using novolog rather than regular and going low with NPH as your background insulin. It could be that you are giving either too much novolog to cover her meals or too much NPH (or a bit of both). As I got more used to the diabetes I generally made small changes in William's doses on my own -without contacting the doctor. I'll add that I also tested the HECK out of him when I did it too! However I would not suggest that you try this on your own. Just know that at some point you will feel more confident trying this or that. William has never been able to recognize a low (or high) - of course he is so young (4 yrs old now). He has been as low as 24 and acted normally.

I noted in my post yesterday too that if you go on lantus that someone will have to give your daughter shots during the day when she eats lunch or has a snack. You are right though that it gives more freedom to eat whenever.

I also highly recommend the book Sweet Kids (also sold at amazon.com). I personally believe that, although we have to make some changes in the way our kids eat for some things, that it is best to try to give them a regular healthy group of foods. I met one mom that wouldn't give her newly dx'd daughter things like corn on the cob or watermelon anymore now that she had diabetes! I know it took me awhile to be comfortable giving William a banana because of all the carbs in it (more than some candy bars!). Then it dawned on me that I was being stupid! LOL! I just learned how to bolus him for fruit. I'm not suggesting we encourage them to eat a bag of chocolate chip cookies but I think we have to teach our kids how to eat healthy and work in those snacks and desserts in moderation. I hope some day that he'll will know he can eat ANYTHING as long as he is careful and learns how to bolus for it.

I don't have that little portable scale - I have big Salter Nutritional Scale. That one is wonderful and if you use it enough eventually you'll get used to eyeballing things as well. It takes time!

I ADORE the pump and I'm very pro-pump so know my bias on that. It would take me all of 1 second to ask for a pump if I found myself to be diabetic. William's A1C's are much better on it. He has far fewer lows and highs. He can eat just a few carbs (like say he wants to try a marshmellow) and I can bolus for it. He is very sensitive to food and insulin so I do have to bolus for anything he eats over 3 carbs usually. And you always have the insulin right there with you - no more syringes. The biggest thing for most kids is that it is just one prick every 3 days or so to insert the set - rather than 3-7 shots a day. There are downsides - of course the biggest is that your daughter has to wear it and want it. If the flow of insulin gets interrupted (like from a bad set insertion) then the person can go DKA within 6 hours or so. You have to be very careful to test - perhaps more often than you do. You do have to keep all the stuff around in case there is a problem with the pump and you have to go on shots.

Good luck with everything. The CWD conference is awesome and not to be missed. They also have regional conferences just about pumping insulin - your daughter could actually TRY an insulin pump (with saline in it rather than insulin) and see if she likes it. Hope I answered your questions

Carol

 

[Zurg]

Count me as another pro pump fan. Don't think I would wait a second.

I advocate feeding the kid not the insulin. Feed and adjust based on I:C ratios. Not too hard to do.

I love the term background insulin way more logical than basal, or basic as I think of it.

I agree NPH is a pain but for us the the good news is early was the pancreas was doing some work and maked up some of the variance in the NPH. At least in our case it did. Worked well for about 5-6 months with each the kids then it became a peaky mess.

We were taught from the outset to make changes to insulin. OK we checked with the Endo nurse at first but we make our own changes and test.

We are not great book keepers but use a two parent conferance approch and our collective memories and the pump memory.

 

[Selket]

I think William was on NPH for about 5 months - and then it did become a mess when he needed insulin overnight. I was very afraid of NPH's peak occuring on him in the middle of the night (which is why so many folks end up giving these weirdo snacks with cornstarch in them before bedtime - but it works - but ....who wants to eat that!).

I do encourage you to get to the point where you feel comfortable adjusting the insulin on your own. I think some folks do it right away (like Zurg - and myself too pretty much) and some are hesitant to do it. I think you will know when you feel comfortable making those small adjustments. It is also harder when your child is young - yet still in old enough for school - and you aren't with them all day. Then to adjust the insulin is more tricky.

I will add 2 more things: 1 - don't compare your daughter's insulin doses and carb ratios to anyone elses except for entertainment purposes only! There often is some similarity among folks of the same size but there are so many factors affecting it that you shouldn't feel that you are under or over-doing the insulin based on what someone else takes. Your daughter will always have a unique combination of gender, age, fitness level, hormone levels, activity levels, etc. Plus she is honeymooning now perhaps so her doses are very much affected by that.

And #2 - we have found that William goes through cycles with his insulin needs. I haven't found a reason for it but it seems like he will get into a 6 week or longer period of needing more insulin - or less insulin. Sometimes all day but usually just for part of the day. Like he doesn't need as much insulin to cover his snack for the past month for example. I fully expect though that eventually one week he'll start running high after snack and he'll go back to his old snack ratio. I just want you to know that even when you've gotten all those insulin to carb ratios figured out that you should expect to make changes often. There will be unexplained highs and lows throughout. We just try to have fewer of them - but don't blame yourself when they happen!

I kept wickedly detailed records of everything William ate at first - and his insulin. That was very helpful for awhile and might help you. When your child is first diagnosed it feels like you are asked to get your medical degree in 4 days - it is a HUGE learning curve. They perhaps hospitalize your child while you learn to take care of them and then POOF! You are sent home and you're responsible! Ack! I spent a lot of time reading that first year - and re-reading my books on diabetes. It took a long time before I had felt like I had a handle on things.

And please DO use the CWD conference as a great excuse to go to Disneyworld next summer!

 

[DumboDash2006]

Thanks Splashmom. We haven't tried any of the sugar substitutes yet other than aspartame/nutrisweet and Splenda. I try to limit those too.

Hopefully I will be more comfortable with and better at guessing by August!