Disney Cruise Line & Type 1 Diabetes Little Kid - Experiences Please

[amchea]

We have been talking more and more about trying a DCL short cruise. We have cruised with Disney before but not since our Little ones Type 1 Diagnosis. He is 5 years old and is hypo and hyper unaware - he has a Dexcom G5 (remote blood sugar monitoring) and is pumping with omnipod.

My question - How are the Kids clubs with managing instructions for type 1 kids? I need a phone call if his blood sugar goes too low or high, is this something they would do if his dexcom alerted? I have no expectation of them administering insulin or even treating a low blood sugar.

Any experiences would be greatly appreciated!

 

[gap2368]

I have not gone on a Disney course but can't you see your soon BG on your phone thought Dexcom app. so that you can treat his low or hight


other them that I am not sure they may or may not be able to tell you.

 

[amchea]

yes, but he is still young and needs support.

 

[gap2368]

if your phone will alert you to his hight or low then that will almost do the same thing as if they call to tell you he is hight or low as I do not think they can do any treatments there, you may have to go in once an hour check his BG and keep an eye on your phone at his number

 

[lanejudy]

No, the DCL website even states "We are unable to accommodate children who require one-on-one care, which includes counselor-assisted medical attention." I don't believe the Club/Lab CMs will monitor his glucose; the wave phones are, unfortunately, not entirely reliable and sometimes the text doesn't come through immediately so I would not feel at all comfortable with that for my child. They also will not treat to prevent an impending high or low, except maybe in the case of emergency (though I suspect that might involve response from the ship's medical team). I suppose if the Dexcom alerted, they might call you or they might call the ship's medical team considering it a medical emergency. The Club/Lab CM's most likely will instruct you to return periodically to check on him. You would need to decide how often is appropriate, and they can refuse to have him in secured programming if they feel you aren't returning frequently enough for his needs. They do allow diabetic kits to be left at the check-in desk, so it is readily available for the medical staff if necessary (and of course for the family when picking him up as it could be Mom who drops off and Dad who picks up). Sorry, I don't mean that to sound harsh, but they are not properly trained to care for medical needs.

You are welcome to take him and stay with him during Open House times, which are scheduled at least once a day in each space -- Club and Lab. And I do suggest stopping by Open House on embarkation day to discuss your son's care. I also suggest contacting DCL's Special Services department: SpecialServices@disneycruise.com or (407) 566-3602. They will provide a Sharps container for your stateroom as well.

Enjoy your cruise!

 

[stobaugh6]

I have a 12 year old with type 1. At 5 years old, I don't think I would have left him in a kids club on a cruise. At 12 I would, but he's been managing his diabetes for years now and is usually pretty good at feeling his lows and highs. Type 1 stinks. And it really does effect things like family vacations. I'm so sorry.

 

[abinormal]

We don't have a Dex yet, but it was my understanding that you can use their app on your personal cell phone to see the readings. Would that work? Then you can go to treat as needed.

 

[Selket]

We did a couple of Disney cruises when my younger one was still quite young - I think he was 6 and 7 at the time. He was hypo-unaware and I'm sure this was before we got him on a cgms (which wasn't nearly as common then as now (he was on a Navigator but now has been on the Dex for a long time). He couldn't really test himself but they were willing to treat him (as in give him juice) if he asked for it - and of course to call us. At the time DCL had some sort of ship only portable phone or buzzer or something - I remember it worked through them and wasn't on our cell plan. We also just stopped by the kid's club regularly to check on him and check his BG. I think if he'd had a Dex we would have just looked at it and been on our way if the number was good. I mean they were quite reasonably accommodating and I'd think if the Dex started beeping they'd certainly call you. I'm guessing if you have his Dex set up to work with your phone (which means he has to have a cell phone right?) then it might cost an arm and leg to use that cell service at sea - at least it used to! Perhaps it is cheaper now.

My son is 15 now so that was quite awhile ago. You know your child best, and if you think he'd enjoy the kids clubs (which were marvelous!) I wouldn't hesitate to let him go there and just plan to stop by every hour or so (at least at first) and see how it goes. Me personally - I'd err on the side of running him a bit higher as a low is more of an emergency than a high. Checking on him every hour might sound like a drag but my husband and I split up the task so it wasn't so bad - have a wonderful time!

 

[Sprockie]

Mother of a Type 1 daughter, 15 now, diagnosed at 11. We have taken 3 cruises on Celebrity and Holland America since her diagnosis. We have a Dexcom and we do MDI (so no pump). The Dexcom G5 relies on data and wifi to share information to the cloud where you can see it on your phone. I have a feeling that data won't be a)available and/or b)reliable. I only get cell service when I am on U.S. islands - not when we're out to sea. When you're at sea, it's cellular at sea ($$$$$$$). We have a G4 (with a receiver), so no sharing here yet. The G5 is just coming to Canada now.

As far as the kids club, I wouldn't rely on them to even check. My kids never wanted to go to the kids club - they just wanted to hang with us at the pool or wherever, so I have never had this particular problem. I wouldn't leave him in the kids club for any length of time and never when I've just guessed at insulin or he has any chance of going low. Defininitely not for the morning or afternoon.

As far as sailing with diabetes, I always made sure my DD's blood sugar was higher than normal. I kept her that way intentionally. Our endo said "don't worry, you're on vacation, it's only a week. When you get back home, get back on track." I know as a T1D parent, you always want to keep your child in a good range, but letting them run higher than normal for safety I think is just wise. Also, keep in mind that everything they eat is a guesstimate. We are pretty good at carb counting and I never fail to underestimate the amount of walking or swimming she's done and she heads low once or twice (thankfully, we have the CGM). You don't want to run them so high they develop ketones, but keeping them under 14mmol (250) is a safe bet, and bring them down for the night and keep them steady.

• As far as packing, I bring 3x the insulin we need and just keep it on a shelf in the room. It won't go bad for 28 days or more. Don't use the fridge - they freeze stuff.
• I bring glucagon, extra tape for sensors and extra sensors.
• Of course you'd bring all your pump infusion sets, batteries, dexcom cables etc.
• I bring waterproof bags in case we're near the beach for things we don't want wet.
• I bring Frio coolers for insulin if we're in a warm place and we don't want insulin and insulin pens to get too hot.
• Make sure nothing gets x-rayed that shouldn't. When you come back to the ship, they x-ray your bags - make sure child and equipment don't go through the x-ray
• I bring the Calorie King food book to help me estimate carbs for unfamiliar foods
• I get good travel insurance in the event of an emergency situation
• I have lots of glucose tabs, juice boxes, protein snacks etc. in the cabin fridge in case I need them at night.

I hope this has helped out a bit. Good luck and enjoy your cruise.

 

[abinormal]

Ah, I didn't think about the lack of service onboard. Can you tell I've never cruised?

 

[Toon crazy]

We are taking my daughter on her first cruise. She is 8 years old diagnosed almost two years ago. There are things we must think about constantly with a type one child. Of course highs and lows. We also worry about her meter getting ruined and possibly bringing a backup meter for her.

We are lucky that she is able to monitor herself and contact us in the event of a problem. If our daughter was five I would let her go and just periodically check on her every hour or so. It's hard you want to protect them but you want them to be kids.

 

[wilkeliza]

Also just be aware for those whose kids can treat and have prick tests (not constant meters) the kids clubs will not let them enter with the lances or needles. You can have them on you and you can have them in your stateroom etc but they don't allow them in the kid's club.

 

[Sprockie]

We are taking my daughter on her first cruise. She is 8 years old diagnosed almost two years ago. There are things we must think about constantly with a type one child. Of course highs and lows. We also worry about her meter getting ruined and possibly bringing a backup meter for her.

We are lucky that she is able to monitor herself and contact us in the event of a problem. If our daughter was five I would let her go and just periodically check on her every hour or so. It's hard you want to protect them but you want them to be kids.

Yes, we always bring two meters. We brought a backup CGM in January when we cruised as well. Silly me, in all my preparation and my big diabetes bag (which by the way, is not counted as a personal bag or carry on with airlines), I brought a few lancing devices and only 2 replacement lancets!!!! Good thing we rely on the CGM and do far less finger poking.

I can't imagine anyone with a T1D kid doing this, but I know lots of parents get off the ship and take excursions and leave their kids on the ship. Before we had kids, we missed our ship in St. Thomas - no fault of our own - huge traffic and an accident getting back into port and the ship sailed without us. Can you imagine if you had a kid in the kids club? They don't wait. I am so amazed at the parents who do this. You never know what can happen out there - particularly if you're on your own, without being on a ship sponsored excursion.

 

[quickcat]

Just off the Fantasy in January with my daughter who was 7. She has the Dexcom as well. She is not aware of highs or lows either. She knows when her alarm goes off that she needed to ask them to call me. Worked out fine, she wasn't there much- too many kids for her. The staff asked me if she could eat anything that they had as for snacks or cooking classes that they would have. I said yes and they put that in the computer. They didn't seem like it was a big deal at all and as if they were uncomfortable with the situation. Have a great time if you go!