He's a Type Diabetic insulin dependent

Hi,
Thanks again everyone for posting. I am getting more nervous as we get closer. We had our last teaching appointment yesterday. Ryan has been a diabetic for 1 month! Now I sort of know how to manage him--how will I count the carbs in disney. Is there nutritional info anywhere? Will the disney dining plan let him have an appy instead of a dessert? I wonder what the change in activity level will do to his sugars. I think I may have jumped the gun booking this trip. I felt so guilty, like I missed something. Plus I felt really bad that I found him so annoying when it wasn't his fault. He still is annoying sometimes, the insulin didn't help that! I really appreciate all of the replies--even if I don't always reply back. By the way, I did read almost everything on the links selket posted--thanks
Deanna

Deanna,

We found that we were very nervous for every 'first' after diagnosis. First dinner out, first overnight with the grandparents, first swim practice, first trip to DL...you get the picture. Once you experience these things, they get a little easier each time.

As for the activity, you can bet that the activity level will have some impact on your son. My son goes low...you will have to find out how your son reacts. How do you find out without getting into a dangerous situation? Test, A LOT! If you are not sure the first day how he reacting, test every hour, if it makes both of you more comfortable. Again, you will pick up pretty quickly how he will respond and be able to act and plan accordingly. I bet after the first day or two you will see the trends.

As for the dessert question, my advice is not to go overboard with the 'no sugar' approach. Again, you have to do what is right for you, but when my son was diagnosed, it was right before Halloween and the holidays. How did I react? I bought toys to give out to trick-or-treaters instead of candy, used Splenda in all of my Christmas baking, etc. Way too far the other direction for us! Splenda ruined the texture of my Biscotti (this was before the baking version, which I have not gone back to try :-) ), and we found that he needed the candy on Halloween because he ALWAYS runs low. Moderation is a good thing for all of us. Your son has a long life with T1D ahead if you teach him to manage with moderation rather than completely avoid it will be more realistic and he will be more likely to succeed. The day our son was diagnosed, our endo suggested a nighttime snack of 1/2 C of ice cream - the sugar, fat, protein combo keeps him nice and even at night.

I think every parent who has a child with T1D wonders how they missed it. Hindsight is 20/20, as we all know. I thought DS was so thirsty because he was getting over a cold. I didn't even notice that he had lost quite a bit of weight. Then suddenly it hit me like a ton of bricks and I knew when I made his appointment what the result would be. You can't jump to the conclusion of illness every time you child acts out, no need to beat yourself up.

Go and have a great time, you will be surprised at how well you can manage.
 
Hey mastersd. I'm T1, and a Disney fanatic. You have received some really good advice. I agree with test, test, test. That is so important. One thing I would add is to document like crazy. Food, insulin doses, activity levels, blood sugars, general feeling, etc. If your carb counts are good (and they will get better with time) you will be able identify trends, patterns, and best treatment. Treating diabetes is like a big game with different rules for every person. You have to discover the rules on your own, and the way to do it is to document. You will get really good at it after you play for a while. However, highs and lows and the unexplainable will still happen, so you need to be prepared. For instance, travel with double the amount of supplies you think you will need. For lows, I use Sweet Tarts. They are nutritive dextrose so they metabolize quickly, and they come in little individual packs that make them countable and convenient.

Regarding Disney dining, if you let them know your situation, they tend to be pretty accommodating. For instance, I sometimes ask for strawberries and cream for dessert, and it has been my experience that, when they hear that I am diabetic, they really try to make it happen. However, I am pumping now so a lot of the dining maze is now much easier to navigate.

If you have specific questions, feel free to post or PM. You guys will have a great time. As previous posters have said, just be willing to pace yourselves, plan ahead as much as possible, and be prepared for the highs and lows. :thumbsup2
 
Our 4 year old daughter was dx 5 days before we left for vacation to Disney last year. She got out of the hospital on Wed. and we were in DW by Saturday. The doctor said no reason to change plans that Disney World had phones to call if we needed him and you can't stop your life. That was the best advice. While it wasn't a grand vacation (dealing with new dx and stroller being stolen) we are glad we went.

Sorry about the dx. Visit the Children with Diabetes forum. There is alot of support and good advice to be found.
 
Hi mastersd,

I actually think this would be the perfect time for you guys to go on a trip. At least, that was our experience.

My DD was diagnosed with type 1 about six weeks before we were to take the biggest vacation we had ever attempted, a road trip that would include seeing Disneyland and four national parks. Talk about nervous--we were not only new to all this, but we were going places far from hospitals and often lacking cell phone reception. Our endo encouraged us, though, and I'm so glad we did it. It was the trip of a lifetime.

We had relatively little trouble keeping DD's numbers fairly reasonable on the trip, and the reason, I realize now that she's out of the honeymoon phase, is that she was still honeymooning at the time. She had highs and lows, but they weren't as high or as low as what she experiences now. (In fact, we only saw a number over 200 once the whole trip, and that was when we accidentally gave her a sweetened drink to hydrate her when she had altitude sickness in the Rockies.) Because her pancreas was still helping out a little, she didn't have the wild swings she can have now. You said something about people who are honeymooning having a lot of lows, but that was not our experience at all. Of course, as everyone has said, your diabetes may vary. But I think we would have had a much harder time with DD's numbers if we had done the trip after she was out of her honeymoon. In fact, she was all over the place on our vacation this summer.

One thing our endo suggested to us before that first trip post-diagnosis (and obviously you would want to talk to your own about this!) was to not try to get DD's numbers down as low during the trip as we would at home so the danger of going low would be reduced. Now that we're more comfortable with everything, I don't think I would do that on purpose, but it was probably good advice for us at the time.

Like others have said, we took at least double the insulin, test strips, meters, etc. that we thought we would need. We get her supplies at Walgreen's, so we figured we could get prescriptions filled in most areas, but we also took along written prescriptions for insulin as backup.

Figuring carbs was an adventure because DD was eating foods that she rarely or never eats at home (like East African dishes I'd never heard of, served family style, at a little place in Los Angeles). DD's big brother was such a blessing, though; he used his iPhone to access nutritional databases on the web and did a pretty darn good job figuring out her carbs. I would think it might be a little easier for you at WDW since you have some idea of what foods to expect (and maybe even know what he likes to eat down there) and can also look at menus online before you go. The menus on places like allearsnet.com don't have carb counts, but you could probably look up similar foods on the internet and have a leg up before you leave.

Not everyone is into weighing food, but I found it helpful on our trip. Someone loaned me a tiny Salter scale, and we liked it enough to buy one of our own when we got back home.

You mentioned subbing an apple for dessert. I've noticed there are a couple of camps on the internet forums on whether to let kids have high carb foods, like desserts. Some people feel it's ok to eat pretty much what a typical child would eat and cover the carbs with enough insulin. Others believe it is better to eat a somewhat carb-reduced diet. We lean toward the second camp and feel we've been able to help DD gain better control because of it, though she does have a normal dessert or a plate full of pasta now and then. But it's a personal decision and one that, if you're like us, will take time to work out. We do practice what another poster said--our family eats the same diet as our DD. If she doesn't get it, we don't get it.

One other thing I want to mention is a book that I found really useful called Think Like a Pancreas. It has really helped us work on getting the right doses of insulin at various times of day for DD (she is on multiple daily injections at this point and she now uses a different ratio for her Novolog at each meal). Her numbers have improved a lot.

Oh, one more thing--definitely don't wait for things to get stable! When DD was diagnosed, I innocently thought the doctor would keep upping the dose of insulin until he got the right amount and that would be that. Ha ha ha! I eventually figured out that type 1 is a daily adventure. Just when I think I have things figured out, hormones, the weather, or who knows what throws the whole plan out the window. The one thing I do know for sure is that stable is a very relative term with type 1.

Hope that helps some. I think your family will do fine on the trip. Your son obviously has a good support team around him.
 

Hi there!
My lil "Weewell" (DD6) was diagnosed at age 2 with type 1(a week before her first trip). We had a couple of lows during the trip, and we were a little under prepared. But let me tell you CM's have eyes like a hawk. Our first day, Weewell had a low just entering the park! We went into the back area of the Emporium and was cooling her down attempting to give her glucose. Out of nowhere a CM came to ask if we were ok. She then escorted me to the soda kiosk to the front of the line, explained to the vendor, GAVE me a Coke and escorted me back. Within minutes weewell was up and going again. She is now 6 and on a pump, it's a godsend. But issues will happen, so you just have to go with the flow. Just be prepared with snacks, glucose and water and you shold be fine. And in a pinch, don't be surprised if you have a CM helping you along!
 
My DH is type 1...I agree with others,try to get a pump as soon as you can.

A couple things to add...does your son have any characteristics that show he is low? For my husband he starts to make a certain face and also his emotions get magnified. Try to notice that about your son so you can use that as another clue.

Get a Frio wallet-thing to keep his insulin in. Make sure the insulin AND THE TEST STRIPS don't get too hot...we have a now infamous story about when we were in Hawaii and my DH kept testing extremely high but was not acting like it (non-responsive)...turns out he was VERY LOW...the test strips probably got too hot. So use your common sense as well as the strips.
 
Our 6yr old son was diagnosed with T1 on his 2nd birthday - it's a shock initially, but don't let it slow you down. We've taken 3 WDW trips since then and have never had a problem other than a few highs. To the parks we take a shoulder bag packed with extra snacks and MedPort bag with a couple of kool packs. Guessing carbs is a skill that you'll learn over time - the Calorie King book is good to keep on hand - but we rely on the Calorie King software (Diet Diary and Diabetes Log) on our Palm Treo, it rocks! Have a great trip!
 
I just wanted to add that if your child likes fruity drinks that Powerade Zero has no carbs/sugar at all.

I have Type 1 diabetes and was diagnosed in 2006 at the age of 22 and I'm still trying to deal with it. With your help and support your son will do great and he'll have an enjoyable time at Disney. Just remember if he gets really moody don't yell at him about it. Until you have had diabetes you have no clue what your body feels like and no matter how hard you try your emotions will get the best of you.

I will also say don't get wrapped up in all the "sugar free" stuff out there. Even those have sugars like someone else stated but they also have carbs and that's what you're watching when you take insulin. For example sugar free oreos may have fake sugars but 2 sugar free oreos have more carbs than 2 regular oreos!

Hope you have a great trip!
 














Save Up to 30% on Rooms at Walt Disney World!

Save up to 30% on rooms at select Disney Resorts Collection hotels when you stay 5 consecutive nights or longer in late summer and early fall. Plus, enjoy other savings for shorter stays.This offer is valid for stays most nights from August 1 to October 11, 2025.
CLICK HERE







New Posts







DIS Facebook DIS youtube DIS Instagram DIS Pinterest

Back
Top