Disney with Type 1 Diabetes

Let me start by saying we love Disney.  We have traveled to Disney World 3 times in the past 4 years and have our 4th trip scheduled for this summer.  We have also visited Disneyland once.  These are only the times we have been with Cole since his diagnoses 4 years ago.   

Cole was diagnosed with Type 1 Diabetes when he was 13 months old.  He is now 5 and can't wait to go to Disney World again.  The first time we went to Disney World he was 2 and it was kind of intimidating.  We were unsure how to deal with diabetes and how diabetes was doing to deal with Disney.  

Let me start off by saying we drive everywhere.  From our house to Disney World it takes about 16 ½ hours to get there.  We normally take our time and sight see on the way down.  That being said a car ride is tough for Cole's blood sugars.  We have learned that setting a temp basal when we start our journey, increasing his basal rate by 20%, help keeps his numbers down.  Sometimes it is more and sometimes it is less.  Every trip is different.  We carry our current opened bottle of insulin in a Frio bag and keep it in there the remainder of the trip (even bringing it to parks).  Remember though, the Frio is not meant to refrigerate the insulin (this will not work on an unopened bottle that is meant to be refrigerated).  Frio is meant to keep the opened bottle of insulin at room temperature.  We also store Cole's glucagaon in the same large Frio.  Glucagon is meant to be stored at 77 degrees.  We store his unopened bottle of insulin inside a container that is then placed inside a cooler.  This cooler also contains juice, water and snacks.  

When staying onsite at Disney (we stay in value resorts), each room is equipped with a mini refrigerator.  We store the unopened bottles in the refrigerator once we get there.  Usually the first night we test the coolness with a bottle of water and leave our insulin in the cooler.  We want to make sure the bottle of water doesn't freeze as sometimes the refrigerators are set too cold.  (We pulled our refrigerator out from the furniture and turned down the temperature from the gauge that was located on the back).  

Speaking of insulin if you are on a pump ask your doctor to write a prescription for long lasting insulin (in case something happens to the pump).  There are plenty of pharmacies around to get the prescription filled.  Our doctor happened to have some sample bottles of levemir so he provided us with one on our last trip.  We just placed it in the cooler with our unopened bottles of humalog.  (Don't forget to bring syringes just incase!)  

Remember when packing to pack extra of everything!!  Especially during the hot months.  We change Cole's site at least every other day but sometimes every day.  We bring Mefix tape and place it on his pump sites to help it last longer.  We use Grif Grips on his Dexcom sites to help them last longer.  Also we bring Vet Wrap (which can be ordered online or you can get from a tractor supply store for cheap).  This we use to wrap around Cole's Dexcom while swimming.  While it doesn't really help the Dexcom tape last longer, it does help to reassure us that if his transmitter pops out it will be caught in the vet wrap.  So no diving in the pool trying to find a transmitter.   

When we get to the park the first thing we do is get our DAS Pass.  This is a disability pass.  This acts kind of like a fast pass.  You will pick a ride that you want to ride and ask the CM for a return time.  They will determine your return time based off the current wait time. They scan your magic band and everyone in your group will be included (up to 6 people). Now you are free to walk around, gets a snack, use the restroom or ride another line with a short wait (or use a fastpass).  Once your return time has arrived you will then go to the fastpass line and wait your turn (you can arrive anytime after your return time, it does not expire).  You can only get one return time at a time.  So once you finish with the first ride you can go to a different ride and get a new return time.  While diabetes is not technically considered a disability by Disney you can still get a pass. The first several times we went, we got it solely because of diabetes.  You will need to explain why standing in the line is difficult for you or your child.  If waiting in line is not difficult, then the DAS pass will not work for you.   Some people don't believe that Type 1 diabetes is a reason for getting a DAS pass, and that is fine.  What works for some families does not work for others.  We get a pass, just in case.  Sometimes we need it, other times we don't.  You can also get a wheelchair pass for your stroller.  We do this because if Cole goes low, he just falls to the floor and does not move until his blood sugar comes up.  A stroller helps us with this.  He's 62 pounds,  so it's pretty difficult for us to hold him until he is better.  With the stroller we can let him lie down in it until he feels better.  Also, it's great to be able to push all the supplies around in it.  Cole is 5 and we still bring a stroller with us.  We walk on average 13 miles a day while at Disney.  That's a lot of walking for a 5 year old.  (heck that's a lot of walking for me) 

When we go to the parks, we bring a backpack with us. This backpack contains Cole's nightscout rig (Dexcom and uploader phone), a water bottle, 2 juice boxes, giant smarties, peanuts and other snacks, frio bag with glucagon and insulin, 2 insets, 2 reservoirs for site changes (yes we have had to change Cole's site before while at the parks), unisolve wipes, alcohol wipes, his meter, test strips and finger poker.  This backpack goes with us on all the rides.  We have had several rides break down while we were on them and were stuck for awhile so it's very important to have low treatment along with Dexcom and/or meter kit. 

  

Also while you are at the park, if you go to the quick service restaurants and ask for a glass of water, they will give you one for FREE.  I know crazy right, it's free.  Which is great to help stay hydrated.  There are first aid station too, if you want to store your insulin there and not worry about it getting too hot or carrying it around.  For us we would rather carry it.  We have had to change Cole's site a couple of times.  We just found a spot in a quick service restaurant that was pretty empty to change the site.  If you feel more comfortable you could do this at the First Aid station.  I will not go to a restroom to do this as I find restrooms gross.  :  )   

Remember if you do not have a Dexcom, check your blood sugar often.  Disney has different effects on people.  Some go low from all the walking around which is what we expected for our first trip.  Cole however goes high, and I mean really high.  He has anxiety and excitement that factor into his highs along with the heat.  Heat makes him go high.  So for us, Disney means lots and lots of temp basal increases. 

  

If you wear a pump and like roller coasters, tower of terror, test track and others that use large magnetic forces you might want to call your pump company to find out their policy on these rides.  Some will void your warranty if your pump is damaged due to you riding one of these.  I will say we learned about this after our first 2 times at Disney and Cole was wearing a Medtronic pump and we did not have issues but Cole only likes the little kiddie rides.  We did however ride test track with no issues.  Not sure I will take that gamble again though.  Also, rides with g forces could force insulin into you without you knowing causing a low later.  Just something to be aware of.   

There is no carb counts at Disney.  We tend to use our Calorie King App and compare the food Cole is eating to something on the app in order to guess how many carbs he is eating.   Seems to work ok for us (hard to really tell though since he's often higher than normal).   

If traveling to Disney in the hot months, I suggest stroller fans for the little ones.  We also bring small misters and frog toggs to help cool Cole (and us) down.  Like I mentioned before heat brings Cole up so we try our best to keep him as cool as we can.  You might want to bring a waterproof pouch so you can ride the water rides (just place dexcom and pump inside).  Water rides are another way to cool off.  Then of course you are walking around soaking wet afterwards but hey that's part of the fun right : ) Also ponchos are a must.  I have not been to Disney without it raining on us daily.  When Cole had the medtronic pump (not waterproof), I was concerned about it getting wet so Cole would put on his poncho to help keep it dry (even though he wanted to play in the rain).  Now he is on the ping so it's waterproof.  We put on the poncho's in a downpour to keep dry, but at least now we don't have to worry about the pump getting wet.   

Best advice I can give is go and have FUN!!  Disney is a blast.   

Our upcoming trips is 7 days (4 days in park).  Here is an example of what we will be bringing: 

10 or more insets for pump                                                                          

10 or more reserviors for pump 

Extra pump 

Extra pump supplies (insets, reserviors) 

A box of Dexcom sensors 

Lancets 

2 boxes of test strips 

Ketone Strips 

Ketone meter 

Extra glucose meter 

Charger for meter 

Charger for dexcom 

Charger for uploader phone for nightscout 

Ipad (for nightscout readings at night) with charger 

Batteries for pump 

Plugs for pump site (swimming and bath) 

Extra battery cap for pump 

Unisolve to remove pump and dexcom sites 

Waterproof bag 

Vet wrap 

Grif Grips 

Mefix Tape 

Spi belt (for swimming) 

Night Time pump bands 

Day time pump bands 

Frio Bag 

2 unopened bottles of insulin (humalog) Stored in cooler on drive down 

1 unopened bottle of levemir (long lasting) stored in cooler on drive down 

1 opened bottle of insulin (stored in frio bag) 

Glucagon (stored in frio bag) 

Juice  

Giant Smarties 

Peanuts (help stabilize after low) 

Stroller fan

Frogg Toggs

Misters

Check out our youtube video:  Disney with Type 1 Diabetes