DIS never fails... New Type 1 Diabetic

[zurekgirl]

I sit here in tears because the DIS never fails....

Two weeks ago my 8yr son was diagnosed with type 1 diabetes. We are overwhelmed (as everyone is) learning about carbs, insulin, blood sugar, highs and lows. Everyday gets better and I know, I know one day it'll be old hat.

When we found out I was (am) very positive about this with my son, we want him to still eat like a kid and act like a kid; but in my private moments I'm terrified and worried we'll never have our "old" life (obviously not to mention my concerns about major life implications for him). We are huge disney fans and I thought we'd never go again. My best friend pointed out to me that WDW is made for ALL kids and to get over myself.

After much convincing (and before the hospital bills arrived ) I convinced my hubby for us to go in the end of October so our family could do something together. I made the reservation, put down the deposit, transferred to dining and then got totally overwhelmed when I realized they don't provide carb counts. I thought we could pre plan all that out....

Then I logged on to my friends at the DIS finding more helpful information than the dining line ...I've searched some threads and know I'm not alone (THANK YOU), to check out FRIO, and my love for dole whips just grew 100% but here are my newbie questions:

Am I crazy to attempt WDW 4months after diagnosis (we're on shots and I think we will still be in October)?

What in the world do you do with Buffets?

MNSSHP good? I heard we can go to town hall and let them know and they'll help. True? (read a few treads on this - Halloween is makes my head spin)

Any other tips? We'll be doing CS and TS while there.

Thanks

 

[SueM in MN]

The only part that would be a problem for him for the Halloween Party is the trick or treating ( which will be a problem at home too.)

I do not have personal experience with this, but have read the Guest Relations, at City Hall, can provide alternate sugar free treats. But, be aware, some of the sugar free items are as high in carbs as the type with sugar. Some are also sweetened with sugar alcohol, which can cause diarrhea.

Some people avoid the trick or treating and do character photo opportunities itshardto do both.

Some people trick or treat but bring safe treats to trade for.

 

[zurekgirl]

Thanks Sue! Great point. On my first trip to the grocery store I quickly learned Sugar Free doesn't mean Carb Free.... Oh the things I've learned in two weeks!

I guess we're going to have to deal with the candy thing either way. Guess we'll do what we always do. At the end of the night pick a few pieces you love and save the rest (and share with Mom and Dad).

Have others gone so close to a diagnosis? Tips and tricks? I just made dining reservations and avoided buffets, with the exception of Chef Mickey but he mostly wanted cearal and yogurt last time (and I think I've got those carbs memorized!).

Thanks!

 

[DaniGal]

Hi I'm a young adult type 1 diabetic but I've had diabetes since I was six. I've been to disneyworld many times. Unfortunately the only challenge I have faced over the years with disney is that they do not provide any nutritional information at there restaurants. But they are excellent at providing substitutes that are diabetic friendly. On your table service reservations make a note of it.

As far as buffets, breakfast should be the easiest as there is always a lot of low carb or no carb items. Sugar free syrup always available. I would obtain a good carb book because I have found a cup of french fries at disney is the same as outside of disney just watch the portion sizes because disney tends to give you a lot for your money.

Make sure you make time to test sugars several times a day probably double what you would do at home. I know it's horrible. Most diabetics (type 1 insulin dependent) find with the florida heat and all the walking they tend to burn sugars and have more lows. So this would be a great opportunity for a little snack with some fat like a small ice cream.

I would also keep some glucose tablets on hand for the lines. Sometimes we would treat a high or low right in line. Also first aid will hold your insulin to keep it out of the heat.

Any other questions just ask.

Enjoy your Vacation

 

[disneyfaninaz]

I'm sorry for your sons diagnosis. I have been there and done that. My DD was diagnosed with Type 1 at 9 years of age. We have found a new normal, although it changes every day. She has been to Disney World once and Disneyland 3 times since her diagnosis. Even though Disney does not provide carb counts, it is not insurmountable to go and have a great time.

Do you have the Calorie King book? It is wonderful. Also, if you have a smartphone, the calorie king website is also very useful. You'll have to do a log of wild a** guessing, especially at buffets, but he'll probably burn more sugars being active than not. Just check his BGs more often.

As far as trick or treating, you can get carb counts for all candy offered by Disney on the candy's website or through calorie king. Most candy offered will be 5-7 carbs each.

Have you found CWD yet: http://forums.childrenwithdiabetes.com/forumdisplay.php?f=3

This site is very useful as we all are going through or have gone though what you are.

Don't let Type 1 scare you into not going to Disney and having a wonderful time.

As far as getting a Guest Assistance Pass. We have never used one. If you utilize FP and monitor his sugars regularly, you shouldn't have any problem in the parks. Make sure that you take plenty of emergency snacks, i.e. glucose tabs, juices, crackers, etc. with you to treat those surprise lows.

Also, look into getting a FRIO pack to hold your insulin in while at the park. It it a sleeve filled with gel beads that you soak in water, the evaporation keeps your insulin at room temperature. http://coolerconcept.com/

 

[dragonfly57005]

My daughter was dx at age 7 in June a few years ago and we took our first family trip to Disney later that same year in Sept.

Wasn't a problem at all.

She also was on shots and we did the mnnshp as well. She hadagreat time.

There are plenty of books or apps to help you carb count. It isn't any different if you were eating ata friend's house.

Go and enjoy !

 

[zurekgirl]

On your table service reservations make a note of it.

just watch the portion sizes because disney tends to give you a lot for your money.

Make sure you make time to test sugars several times a day probably double what you would do at home. I know it's horrible. Most diabetics (type 1 insulin dependent) find with the florida heat and all the walking they tend to burn sugars and have more lows. So this would be a great opportunity for a little snack with some fat like a small ice cream.

I would also keep some glucose tablets on hand for the lines. Sometimes we would treat a high or low right in line. Also first aid will hold your insulin to keep it out of the heat.

Looks like I might throw a measuring cup in my park bag. Serving size is surprising and I'm not sure I'll be able to eyeball it by then. When we've gone before we've noticed the need for snacks because of all of the extra walking, looks like lots of Mickey Bars and Churrios!

Do you have the Calorie King book? It is wonderful. Also, if you have a smartphone, the calorie king website is also very useful. You'll have to do a log of wild a** guessing, especially at buffets, but he'll probably burn more sugars being active than not. Just check his BGs more often.

As far as trick or treating, you can get carb counts for all candy offered by Disney on the candy's website or through calorie king. Most candy offered will be 5-7 carbs each.

Have you found CWD yet: http://forums.childrenwithdiabetes.com/forumdisplay.php?f=3

This site is very useful as we all are going through or have gone though what you are.

Don't let Type 1 scare you into not going to Disney and having a wonderful time.

Also, look into getting a FRIO pack to hold your insulin in while at the park. It it a sleeve filled with gel beads that you soak in water, the evaporation keeps your insulin at room temperature. http://coolerconcept.com/

I think I always have my calorie king book and/or app. I love it. Only slight complaint, it doesn't include kids meals for resturants. Alas, iPhone to the rescue. I'm getting more confident with the wild guessing. By the end of October maybe I'll be better at it.

The Frio seems amazing. We're going to get one long before that. Ya know, just to field test it.

I've also started to dig through the fourms but just like when I first found the DIS, I'm worried I'll never get my head around everything. Clearly there is LOTS of info out there.

It isn't any different if you were eating ata friend's house.

Go and enjoy !

THANK YOU! Nice to know I'm not the only one who thinks a trip to WDW after a diagnosis is okay.

These are great tips. Thank you guys so much. We have an endo appt in the am. I'm going to chat about it with our team. One more question..

Has the bus system caused challenges?

Thanks!

 

[disneyfaninaz]

I also use the Restaurant Nutrition app on my Android. It includes kids meals at restaurants.

 

[ttintagel]

GREAT advice above! The only thing I can think of to add is to test more often than usual while you're at the parks. Excitement, stress, activity, tempaerature, unfamiliar food, etc. can all affect BG. And they can also mask the symptoms of high or low BG, even for a twenty-year veteran like me. I basically tested every time I sat down to rest. Depending on what your insurance covers, you may want to ask your doctor about getting extra test strips for the trip.

Also, if you're staying at a Disney resort, Mousekeeping can give you a new sharps container so you don't have to worry about bringing one.

 

[buffettgirl]

You'll be great! It sounds like you have things well planned.

I would also maybe get a travel scale - for me it was a little easier early on to figure out serving sizes at restaurants if I could just weigh the food. But measuring cups are good too. I like calorie king, but I also like an app from Fat Secret called "calorie counter" - I find the database a little better.

I'm going to assume your child is on shots still and not a pump , so for us that early after diagnosis, it was easier to just give the shot after the meal was finished - especially at a buffet. Just carry a little notepad and jot down the carbs as they're being eaten and give one shot after (or 2 - 1 half way and one at the end, if your child isn't horrified of that notion)

Take 3 times as many supplies as you think you'll need, but know that you're also not in the middle of nowhere. Don't forget meter batteries.

Someone else mentioned - lows happen, despite the goofy food, so usually we find a mickey bar at the end of the night usually is a good balance of carbs and fat to keep pretty good BGs at night. You'll test at night, even if you don't do it at home - and probably more than once a night. BGs will be weird.

We sometimes we take a longer line just so we can rest and wait out a lowish BG without my son feeling like we're missing out - there's nothing he hates more than having to sit and wait out a low. So sometimes we'll take a long line just so we can do that.

We carry granola bars too (or cheese and crackers). But plenty of glucose tabs. If your child doesn't yet like those, try to work on it before your trip.

Disney doesn't offer any nutritional info unless the food is pre-packaged. Don't bother mentioning to the chef's about diabetes because all they'll do is shove fruit at your child. LOL. We stay away from sugar free options, as do most kids with type1 - the tummy irritation is not good (and as you've already noted, the carbs are still there). But speaking of fruit, we find it plentiful and I know for us early on, an apple or grapes, would be a good snack as it didn't really need a shot even though now we couldn't get away with it.

Talk to your dr about learning now how to reduce lantus (or whatever long acting you're using) based on activity, and work on knowing how to reduce short acting based on food and activity.

Remember that excitement can cause highs. Don't treat those - you'll crash later.

And lastly, remember that you're on vacation. You do the diabetes stuff to the best of your ability but at the end of the day if every blood sugar isn't perfect it's ok. You're new. You're allowed to cut yourself some slack.

 

[discookiemonsta]

I'm so sorry to read about your son's T1D diagnosis I truly know how you must feel. I was in the same spot almost 4 1/2 years ago when my 9 year old DD was diagnosed with T1D 3 months before her 5th Birthday. We had already had a Disney Birthday trip planned, booked and paid for and after talking about it, we decided to go ahead and go. It was truly a special trip.

Yes, we were still new to all of it, our DD was on MDI (Multiple Daily Injections), and neither day was a 'perfect' D day, but that is how life is with D...neither day will be 100% perfect. There will always be highs and lows because D does not play fair!

Halloween candy has never been a problem for us. We keep the candy for treating lows and the chocolate we add to bedtime snacks some evenings.

At home we still measure/weigh all of her food, count out crackers/chips etc, but on vacation that is a lot tricker. If you can bring scales/measuring cups etc, that will be great. Personally we just judged the food and didn't have a problem.

Yes, definitely stay away from Sugar FREE stuff...it has sugar alcohol in it, which can be harmful as well as these foods have higher carb counts. Now, if you find foods that are 'no sugar added' then those are really great, with much lower carb counts.

Our nutritionist told us that our DD is a growing child so she is allowed to eat anything she wants (except of course soda, candy etc, which can be used for lows) in moderation, at the right time. She eats anything from birthday cake, to cookies, brownies and ice cream. Of course she also has balanced meals of protein/carb/vegetables etc. The sugary 'snacks' are always her bedtime snacks with some milk (unless it's ice cream of course). We want our DD to grow up as normal as possible. So at Disney, she has the same things we have, including pastries, Mickey ice cream bars, desserts etc...

At Disney we do always carry a variety of snacks with us, as well as a small juice box and candies for lows and her glucagon kit, frio pac with insulin, blood glucose kit (we always carry an extra one on vacation), 2-3 times as many diabetes supplies - strips, insulin etc. We also stop at a Publix before checking in to our resort so we can get suitable snacks, drinks, water, breakfast items etc. for the room so we are not always having to run to the food court to grab something to eat/drink.

That's about all I can think of right now...

If you have any more questions, you can always send me a PM

 

[AnitaDisneyVacation]

Our DD12 was just diagnosed in early April, and we are going in August.

About a month after her diagnosis we went to Hershey Park (already planned, tickets bought, etc.) and she did amazingly well. Lows were absolutely a bigger concerns than highs. With all the walking and excitement involved at theme parks, we found that we were giving her around 15g of carbs every hour to keep her BGs steady.

If you plan to do any swimming, be sure to test afterward - sometimes my daughter's sugars will continue to be low for 4 or more hours after she swims.

Here's a link to an article on AllEars - it has some carb counts for snacks at Disney: http://allears.net/pl/diabetes.htm

An app that we have found very helpful is MyFitnessPal - it seems to have a bigger database of foods than the calorie king, and you can enter your serving size and it will calculate the carbs for you - one less thing to have to deal with. It requires a (free) login and password but doesn't share your information. It also lets you enter your own recipes and calculates the carbs for them. This was a huge help for me after we were discharged from the hospital.

T1D is incredibly overwhelming. It's a tough adjustment to make at first, but there are tons of resources, apps, and technology out there to help ease the transition to the new normal.

And here's some unsolicited advice that we learned the hard way. You might want to invest in vial protectors. They sell them on Amazon. DD dropped her only humalog vial on our tile floor the first week after being diagnosed. It shattered on impact and left her unable to eat for about an hour till we got a replacement. If you don't want to get the ones on Amazon, some good old fashioned bubble wrap works really well.

 

[Jen_in_NH]

I'm sorry to hear of your son's diagnosis. My son was diagnosed 3.5 years ago, and I remember just being in shock for a few months. Definitely check out childrenwithdiabetes.com. It was so helpful to me just to have other parents who understood.

We went to Disney about 10 months after diagnosis. In some ways, it was easier for us, as our son was much younger than yours, so we controlled more of what he ate. We brought a calorie king book, as well as a collapsible 1/2 cup measuring cup. We found the buffets worked well, as we controlled the portion sizes, and could avoid foods we knew caused issues for us with blood sugar (mac and cheese is a disaster for us, and it's pretty easy to avoid it in a buffet, as there are so many other things)

We were pumping when we went, and found that we did not need to change his basal rates, but we did have to check a lot more frequently, as we had tons of lows for a while.

Good luck with your trip - it will go just fine.

 

[MomDad&2boys]

I'm sorry about your son's diagnosis. I was in your shoes at this time last year. My son was diagnosed at age 7 just 7 weeks before a WDW trip. I was nervous but I wasn't going to let Diabetes change the way we live. I can't guarantee that it will be easy but you may be surprised. We've been very lucky in that my son's honeymoon stage has lasted for almost a year now. Each time we've headed to Disney we've had to decrease his insulin slightly and he only has one shot of long acting insulin/ day since about 3 weeks after his diagnosis. I know this isn't the norm but I just thought I'd toss in a really positive story.

 

[zurekgirl]

Thanks again guys. While this will be a surprise trip we have been talking to my son about the "WAG" (BTW-Love this term!) that has to happen. We want to introduce this a dance not a perfect science. That sometime even if we're "perfect" our bodies have other things in mind.

Yesterday, at his suggestion, he and I went and tried a new mexican food place in town. He knew I wanted to try it and he justed that just he and I go, a kind of date. I was nervous. This was not a chain and no specific information was avaliable. We did great. We 'WAG'ed it and did okay. He had a low after so we might have overguessed but we knew how to treat that.

All in all it was a great lesson...Go to the dance (WDW), bring the right shoes (D supplies & head smarts) and then go crazy and dance!!!

Seriously thank you all so much. It's nice to know my worries are normal and everyone else has dealt with it without major issues.

112 Days to go!!!!

 

[disfreak88]

I am a type 1 daibetic and i have been for over 20 years now and I have been going to mickey's not so scary party for the past 3 years now with my mom, and i can tell you that the trick or treating around the part isn't that bad of a thing for a diabetic, i know that i did this and i didn't recive a lot of candy at all and it actually can in handy the later that night when we were walking around and i dropped low very suddenly and didn't have any glucose tabs on me. so this event can be done by a diabetic just make sure that you dont hit every single candy station

 

[welovedisneyx4]

Thanks again guys. While this will be a surprise trip we have been talking to my son about the "WAG" (BTW-Love this term!) that has to happen. We want to introduce this a dance not a perfect science. That sometime even if we're "perfect" our bodies have other things in mind.

Yesterday, at his suggestion, he and I went and tried a new mexican food place in town. He knew I wanted to try it and he justed that just he and I go, a kind of date. I was nervous. This was not a chain and no specific information was avaliable. We did great. We 'WAG'ed it and did okay. He had a low after so we might have overguessed but we knew how to treat that.

All in all it was a great lesson...Go to the dance (WDW), bring the right shoes (D supplies & head smarts) and then go crazy and dance!!!

Seriously thank you all so much. It's nice to know my worries are normal and everyone else has dealt with it without major issues.

112 Days to go!!!!

You seem to have a great outlook on the situation! My son was diganosed w/ Type 1 at age 6. (He is 12 now) After thinking about it, I realized we have only been to DW 1 time since then!! OMG---we have got to go again soon! Hopefully, next April.

Anyway, I was going to tell you that we did not get a Guest Assistance card mainly b/c there was always a long line at GS in the morning and we didn't want to wait. We found the Cast Members to be very accomodating even w/out a GA card. In particular, we had gone to Hollywood and Vine at MGM for dinner and then went to Fantasmic. DS sugar was a bit high and his stomach was hurting. Lots of times that means throwing up and feeling bad for at least 12 hours. Well, the H&V waitress got him some diet Ginger Ale and some crackers or something like that. He felt a bit better when we went to Fantasmic, but his stomach still hurt and we were worried about getting in the middle of a row and him needing to get to the bathroom in a hurry and trying to get there quickly. We explained the situation to the CM there and they let us sit in the back in a wheelchair area that wasn't being used near the bathroom. Luckily, his sugar came down and by the end of the show he was fine. It was a great feeling to be sitting at the back near the restrooms and knowing the CM's were looking out for us.

We have been to Busch Gardens Williamsburg numerous times since his diagnosis and we haven't had problems at all. He has ridden all but 1 or 2 of the biggest coasters and the water rides. (He has a pump and we did take that off for the biggest water ride and left his w/ his Dad who hates water rides LOL!) BG does have some kind of "no bags on big rides or in the lines" policy, but all we have to say is that there is medical supplies in there and it's fine. We have his test kit and snacks. We would always have the snacks w/ us anyway, we found that gummy snacks or a cow tail is a great pick me up during a long wait!!

I think this was said, but again, be sure use 1st aid to store the insulin and any extra supplies you don't want to carry around and you brought to the parks "just in case".

Oh- if you are flying, you generally can have 1 extra carry on bag for medical supplies. This has been the case for DS's supplies as well as my DH's CPAP machine.

Have fun and good luck!!

 

[poohbear8]

My son was diagnosed last Sept. He was 18 and 2 weeks into his freshman year at college. I don't have advice for Disney, but wanted to offer this. When he was first diagnosed I found myself bookmarking anything I might want to follow up on as time went on and I understood more or needed more info.

www.spibelt.com This is a small belt with a pocket that can carry his pump or candy if needed.(it might hold needles too, but we never tried that) I bought a water proof one for my son just to have and he has said it has come in handy at times. He is now on the pump, which he clips to his pocket, unless he was mowing the lawn. The pocket is big enough to hold an iphone also.

www.roadid.com This place offers an ID which has a code on it that emergency personnel can use to access all of his medical info. They have dog tags, velcro bands and rubber ones similar to the Live Strong type, all with the metal tag that easily attaches. After trying a dog tag and a basic medical bracelet, DS finally went with the Live Strong type. The extra bands were only $1.00 each and it hopefully won't come off as easily as the cheap medical one he started with. I feel better knowing that if something happens while he is away from home, my phone number is listed to be called and the ER people will know his history even if he can't tell them himself.

Hope that helps some! Enjoy your trip! I think with a little bit of planning (being prepared for lows) the trip will fall into place fine. One more hint, I would check his feet daily also. I know the feet tend to give diabetics issues, I would check for blisters and such each night and be sure to take some blister bandaids or mole skin to help him if his shoes start to rub him. (don't have him use new shoes)

DS found several apps that list carbs for him on his iphone. You might want to check them too. I also bought him a book with fast food places listed since he was at college and they are on campus as part of his dining plan. I can't tell you the name of the book though, it's packed at his storage bin, but it was at a regular book store.

 

[dizsophie]

Thanks Sue! Great point. On my first trip to the grocery store I quickly learned Sugar Free doesn't mean Carb Free.... Oh the things I've learned in two weeks!

I guess we're going to have to deal with the candy thing either way. Guess we'll do what we always do. At the end of the night pick a few pieces you love and save the rest (and share with Mom and Dad).

Have others gone so close to a diagnosis? Tips and tricks? I just made dining reservations and avoided buffets, with the exception of Chef Mickey but he mostly wanted cearal and yogurt last time (and I think I've got those carbs memorized!).

Thanks!

I was diagnosed a year ago (april 16, 2011) when I was 12. I went to Disney that July and was totally fine. I am probably not a normal case though, being that my mother is also a T1D. For halloween last year that is exactly what I did. I divided to about 1 or 2 pieces each day. If you end up having issues with that, you can ask him if he wants to trade his candy in exchange for toys or money... Good luck!

 

[levenhopper]

If your child doesn't yet like those, try to work on it before your trip.

I can't stand the taste of tabs, so I buy the individual tubes of cake gel. For some reason, I like the taste of those better, and they are each about 15g.

Good luck. It's a rocky road at first, but it's something that can be totally manageable. I was DXed about 8 years ago, and live a "normal" life now. I work as a firefighter/paramedic, and my insulin pump is the best thing ever. Once you get used to counting carbs, it's something to explore.