Info Needed: Child with Type 1 Diabetes (Newly Diagnosed) & Multiple Disabilities

[Trip 2 Disney]

My DD 13 with multiple disabilities was just diagnosed yesterday with type 1 diabetes. In all the information overload and our current 3-day or more hospital stay I decided to give myself a break and research diabetes (not really a break but my family is napping). In the process I thought about our scheduled WDW trip in May and began to wonder how to handle my DD diabetes while on our trip. This will be our first trip to WDW and we are so excited but unsure what to expect or do for our trip. Please share your advice and experiences with managing Type 1 diabetes at WDW. Please keep in mind that we are just learning about diabetes so please let me know what any abbreviations you use stand for. We will be discussing this with our physicians but wanted to see what others personal experiences have been.

Trip details:

*Going in May 2011 for 8 days
*Staying at All-Star Music
*We will be on the dining plan



Thank you in advance!

 

[DCDisney]

I think by May you will be ok in dealing with it all and knowing what foods work and don't work for her in terms of keeping blood sugar stable. The biggest difficulty at WDW is that they don't have carb counts on foods to give you so you need to get good at estimating and possible carry and book or app on your phone to help with carb counts. IN terms of foods every TS restaurant is very accomodating and can always do plain grilled meats if that works best for her tastes and needs. Every TS place offers some type of sugar free dessert or fruit for dessert if that works with her eating plan. For your QS meals there are a few places with sugar free desserts or they will substitute fruit (usually apples or grapes) or bottled water. Sugar free drinks are widely available like minute maid light lemonade, sprite zero, and diet coke.

 

[Jen_in_NH]

I'm sorry to hear of your daughter's diagnosis. My son was daignosed at 20 months, and it's still a shell-shock some days.

We took him to WDW about a year after he was first diagnosed, and I was really nervous about it. It was fairly easy, compared to what I had been expecting. As the PP told you, WDW does not give carb counts, which can be a pain in the neck. We found that having a copy of the Calorie King book, and bringing a measuring cup to measure out actual portion sizes really helped. There are sugar free options, but as you're probably learning, they have just as many carbs as the regular stuff.

Bring extras of all your supplies with you. It would stink to lose a meter, and not have a spare. Test frequently - with all of the activity, heat, and excitement, you will find some really weird highs and lows. Make sure she stays well-hydrated. If you need them for anything, the first aid centers are great. We never needed them for a first aid problem, but they let us come in to change out his pump site.

If you haven't found us already, come check out the forums at childrenwithdiabetes.com It's a great group of families dealing with Type 1, both for information and for moral support. It's a lot to get used to living with, and it really helps to find others in the same situation.

Jen

 

[JulieWent]

Went with my friends in November. Their 3 year old had just been diagnosed with Type 1 several months beforehand, and I came here for suggestions. Some VERY good soul reminded me of this link:

http://allears.net/pl/diabetes.htm

This site is exceptional -- written by a funny, warm, but down to earth family whose two children have Type 1. The site is titled "Disney with Diabetes." It's really great.

Julie

 

[DumboDash2006]

I'm sorry to hear of your dd's diagnosis. My dd (now 10) was diagnosed just over five years ago.

We went to WDW the following summer. Honestly it went very well. She was however still young enough to ride in the stroller so I think that really helped avoid low blood sugar due to the extreme heat and exercise. We plan to go again this summer or next and we'll see how she does walking.

If you haven't gotten the Calorie King book for carb counts yet you will be doing so soon I'm sure. It comes in very handy when eating out and that includes at WDW who as mentioned above does not provide carb counts. Just use the item in the book that sounds the closest to what your dd is eating. You will get pretty good at carb counting in the meantime.

Pack plenty of supplies. Double or triple what you think you might actually need. Things happen lol. Don't forget if flying to keep the D (diabetes) supplies in your carry on. At the parks I wore a huge fanny pack and carried in it: meter kit (meter, test strips, lancing device and lancets), syringes, glucagon kit, glucose tabs/skittles, pb crackers and a vial of fast acting insulin. I used a FRIO pack to keep the insulin from getting hot. See below. DD also wore a smaller one in case she went on a ride or off somewhere with someone else in our group. I was able to take it on all rides.

Good luck. It went really well for us. Not many highs or lows and the few we had were dealt with quickly and easily.

http://www.coolerconcept.com/

 

[MomofLogan&Evan]

I am sorry to hear about your child's diagnosis. It can be a challenging disease. My son was diagnosed in Dec 06 when he was 15months old. Our
1st trip to Disney was Oct 08. We had a fabulous trip - so much so we went back in Dec 09!

I agree with the above posts: bring extra supplies with you, use a frio pack to keep insulin cool, bring measuring cups with you, and use the calorie king book. Make sure you check blood sugars frequently.

Also, make sure you carry your supplies on all rides AND keep sodas and small tubes of cake icing in your bag because you don't want to be standing in line getting a soda when your child's sugar is low!

 

[disneyfaninaz]

Sorry to you hear about your diagnosis. We have definitely been there. My DD was diagnosed in December 2009. We have done a few trips and have managed pretty well.

If you haven't found it already, there is a wonderful forum dedicated to those with Children With Diabetes.

http://forums.childrenwithdiabetes.com/forumdisplay.php?f=3

You'll feel more comfortable with managing her diabetes by May. Make sure you take extra supplies with you, including extra meters. Also, make sure you get a Calorie King book. Disney does not supply carb information so this book will be very valuable in counting her carbs.

 

[Trip 2 Disney]

Thank you all for sharing your experiences and advice. The pass few days have been a little overwhelming with all the diabetes education & information we have received. We have been home for a few days now and I am starting to get the hang of the carb counting, administering her insulin and checking her blood sugar.

Based on your responses I will definitely:

• invest in the Calorie King book
• visit the children with diabetes website
• review the diabetes article on AllEars
• visit the cooler concept website
• bring extra suppies
• bring a FRIO pack
• bring measuring cups
• frequently check blood sugar
• keep supplies in carry on when flying
• take supplies on all rides
• purchase a spare meter
• visit the diabetes forum

I'm feeling much better about our trip after hearing your experiences. Thank you all again

 

[disneyfaninaz]

Don't buy another meter. Your endo should have "free" ones that they give out. Afterall, the meter costs nothing, it's the strips where the manufacturer's make the money.

 

[Trip 2 Disney]

Don't buy another meter. Your endo should have "free" ones that they give out. Afterall, the meter costs nothing, it's the strips where the manufacturer's make the money.

Thanks! I'll ask our endo for one during our next appointment.

 

[daneenm]

Lots of good advice has already been given (including my favorite http://allears.net/pl/diabetes.htm which helped us so much before our trip to WDW).

I am going to throw this out there as just another view on things - not right or wrong so I hope I do not offend.

I, personally, would not and do not carry measuring cups or even carb counting books with me. Books can be quite cumbersome and the measuring cups are awkward to carry. Instead, I have several food nutrition apps for my phone that I refer to. Something like Restaurant Nutrition has chain restaurant info and I can almost always find a comparable food item to use as a baseline. Also the Livestrong App has an extensive food database that covers just about anything I have every searched for. For measuring, we really do just eyeball it. If you figure that a cup is about the size of your fist (or whatever is useful to you), I think you will find that you are quite accurate.

In the 8 years that we have been dealing with T1D, I have learned that this is a marathon and, while I would like to strive be the perfect replacement pancreas for my son, I also need to teach him usable ways to manage when he is on his own. He is only 10 now, but soon he will be doing this on his own. So, this is our way of trying to prepare him.

At any rate, this is all so new to you, I would just work your way through the basics first and then maybe in the April timeframe come back to these suggestions. You will know a lot more about your DD's routine then and can better absorb the information.

Along with the CWD site, I have recently found TuDiabetes http://www.tudiabetes.org, which has a parent of children with Type 1 discussion group (as well as many others). It has some good info too that you might want to check out.

 

[Trip 2 Disney]

Lots of good advice has already been given (including my favorite http://allears.net/pl/diabetes.htm which helped us so much before our trip to WDW).

I am going to throw this out there as just another view on things - not right or wrong so I hope I do not offend.

I, personally, would not and do not carry measuring cups or even carb counting books with me. Books can be quite cumbersome and the measuring cups are awkward to carry. Instead, I have several food nutrition apps for my phone that I refer to. Something like Restaurant Nutrition has chain restaurant info and I can almost always find a comparable food item to use as a baseline. Also the Livestrong App has an extensive food database that covers just about anything I have every searched for. For measuring, we really do just eyeball it. If you figure that a cup is about the size of your fist (or whatever is useful to you), I think you will find that you are quite accurate.

In the 8 years that we have been dealing with T1D, I have learned that this is a marathon and, while I would like to strive be the perfect replacement pancreas for my son, I also need to teach him usable ways to manage when he is on his own. He is only 10 now, but soon he will be doing this on his own. So, this is our way of trying to prepare him.

At any rate, this is all so new to you, I would just work your way through the basics first and then maybe in the April timeframe come back to these suggestions. You will know a lot more about your DD's routine then and can better absorb the information.

Along with the CWD site, I have recently found TuDiabetes http://www.tudiabetes.org, which has a parent of children with Type 1 discussion group (as well as many others). It has some good info too that you might want to check out.

Thanks for the advice! I'm learning more and more each day and will defiantly have a better understanding of my daughters needs by our trip.