WDW with a 3 y/o type 1 diabetic

[amchea]

We are planning a trip to WDW in December. I have a son who was recently diagnosed with type 1 diabetes. He is insulin dependant and is still in his honeymoon phase, they say it could last at least a year.

My biggest fear is getting close to the front of the line, him having a low blood sugar and then having to deal with it which requires us waiting at least 15 mins to continue activity.

As anyone taken a young child with type 1 to disney? Is this the type of thing that would qualify us for the card? Do I really need the card or would we br alright without?

Tia

 

[lanejudy]

Welcome to disABILITIES!

I know a new diagnosis can seem so very overwhelming. You have almost a year until your trip, and you'll likely feel like a pro by then. There are several posters with T1 children, I'm sure they'll be along to share experiences. I wouldn't stress about the trip at this point, review how things are going next fall and work on plans then.

Good luck getting your little one stable and enjoy your vacation!

 

[amchea]

Thanks!

We are "lucky" that my DH is also type 1 and is well controlled. We caught it at the very beginning and are stable (for now). The time of year was a big decider for this trip, we don't want too much heat to further exhaust and mess with his sugars.

We just went in Oct, right before he was diagnosed, and he had a blast! He's so excited to go back.

 

[Jen_in_NH]

We took our T1d son for his first trip at 2, and have never had any issues with his diabetes while there. If there were lows, we treated them in line and just kept moving. It was definitely easier when he was little (at 2, he wasn't going to be riding roller coasters ).

We have found far fewer lows than we expected, and much more stable numbers. I think the combination of grazing all day and more walking really works for us.

As far as DAS, we've never gotten one. We do get the stroller as wheelchair tag, so we can keep him in the stroller if his sugar is low and we're waiting for it to come up (he's 7 now, so I can't just carry him anymore)

 

[dsneygirl]

We took our T1d son for his first trip at 2, and have never had any issues with his diabetes while there. If there were lows, we treated them in line and just kept moving. It was definitely easier when he was little (at 2, he wasn't going to be riding roller coasters ).

We have found far fewer lows than we expected, and much more stable numbers. I think the combination of grazing all day and more walking really works for us.

As far as DAS, we've never gotten one. We do get the stroller as wheelchair tag, so we can keep him in the stroller if his sugar is low and we're waiting for it to come up (he's 7 now, so I can't just carry him anymore)

Same as Jen. My T1 just turned 3 and has been T1 since 14 months. We have 2 trips to WDW, 1 to DL and a cruise in the 2 years since. We have seen some crazy swings but deal with it as it comes. Carry everything with you in every line. I agree with Jen, even if he's low and you give him a juice box in line most rides the 3 year old is riding are pretty tame so you shouldn't have issues. This past trip he seemed to run high a lot so our bigger issue was getting out of the line to pee. But all 3x the CMs could not have been nicer and let us wait right at the front to catch up to DH and ODS who stayed in the line.

I know you are newly dx and probably completely overwhelmed but I suggest you look into a Dexcom CGM (continuous glucose monitor) it is life changing and it makes our (and his life) so much better.

When my son was dx I really wondered how we would ever travel, camp and do all the things we love. We still do them all. it just requires some additional planning and a lot more packing.

 

[amchea]

My DH has a CGM from animas and a pump from animas as well. we are actually gathering the paperwork required for the insurance company to get approval for coverage for the CGM! I'm glad to know your son likes it! We'll definitely have it on him for the trip.

My DH is very afraid of him getting sick while we are away. We are normally big cruisers. But he's worried he'll get Norovirus or something and end up very ill on the cruise ship. He's fine with staying in Florida - knowing the healthcare there is excellent - so we'll be sticking to Disney for a few years until he's better with telling us something is wrong.

Good to know that the CMs are great about meeting up with the line thank you so much!

 

[dsneygirl]

We took our T1d son for his first trip at 2, and have never had any issues with his diabetes while there. If there were lows, we treated them in line and just kept moving. It was definitely easier when he was little (at 2, he wasn't going to be riding roller coasters ).

We have found far fewer lows than we expected, and much more stable numbers. I think the combination of grazing all day and more walking really works for us.

As far as DAS, we've never gotten one. We do get the stroller as wheelchair tag, so we can keep him in the stroller if his sugar is low and we're waiting for it to come up (he's 7 now, so I can't just carry him anymore)

My DH has a CGM from animas and a pump from animas as well. we are actually gathering the paperwork required for the insurance company to get approval for coverage for the CGM! I'm glad to know your son likes it! We'll definitely have it on him for the trip.

My DH is very afraid of him getting sick while we are away. We are normally big cruisers. But he's worried he'll get Norovirus or something and end up very ill on the cruise ship. He's fine with staying in Florida - knowing the healthcare there is excellent - so we'll be sticking to Disney for a few years until he's better with telling us something is wrong.

Good to know that the CMs are great about meeting up with the line thank you so much!

The first few months after dx I didn't want to leave the house to go to the grocery store let alone imagine a cruise! But it gets easier and you will have so many more tools in your tool box once you have a few months under your belt. You'll learn about managing illness and that it's part of the package You'll start to learn the patterns and you'll know when something is "off" My DS has been T1 for almost 2 years and still couldn't tell you if he was "high" or "low", lol.

 

[hulagirl87]

DD was just diagnosed with Type 1 diabetes in September. She will be 5 in February and we have a short trip planned for the end of April. She is in her honeymoon phase now but I'm nervous that she will be out of it by April and things will be harder. I feel like we are really good with insulin and glucose checks but I'm a little scared about really high highs or super lows. Even though she will be 5 when we go, I'm still going to bring a stroller for her as she tends to tire out easily. I'll just make sure to keep her hydrated and check her often. Someone mentioned the DAS card to me and I don't think I'm going to use that. I think we will be ok without it.

 

[dsneygirl]

DD was just diagnosed with Type 1 diabetes in September. She will be 5 in February and we have a short trip planned for the end of April. She is in her honeymoon phase now but I'm nervous that she will be out of it by April and things will be harder. I feel like we are really good with insulin and glucose checks but I'm a little scared about really high highs or super lows. Even though she will be 5 when we go, I'm still going to bring a stroller for her as she tends to tire out easily. I'll just make sure to keep her hydrated and check her often. Someone mentioned the DAS card to me and I don't think I'm going to use that. I think we will be ok without it.

Our first trip after dx we didn't have Dexcom and just checked every hour. Dex had made everything easier for us. We're lucky in 3 trips I can't think of a time where a DAS would have really made a difference for us. Personally I'd rather just wait the 20min then get a return time and wander around for 15 and then come back.

 

[amchea]

Disney girl - is that what the pass would do for us? I feel like it's not something I would use all the time, but some of the lines for his favourite rides last Oct are sometimes an hour long. I know he won't be able to wait that long and us not have some blood sugar issue to deal with.

 

[dsneygirl]

Disney girl - is that what the pass would do for us? I feel like it's not something I would use all the time, but some of the lines for his favourite rides last Oct are sometimes an hour long. I know he won't be able to wait that long and us not have some blood sugar issue to deal with.

To be honest we have never used it. But as I understand it you get a return time and you get in the Fast Pass line so a shorter wait.

We've never had an issue that we could not wait in line for but I know many people get it for their T1. We just don't feel the need. I test, treat, heck I've given a shot while waiting in line for Minnie Mouse. You do what you gotta do for your kid.

 

[buffettgirl]

for us, when my son was younger, a long line was often the best thing for us. It was usually shaded or inside, it was slow and non active, and we could deal with any blood sugar issues without making him feel like he was missing something. Try telling a young child to sit down for 15 minutes while his BG comes up - while all of Disney is waiting - and see what happens. LOL. On the other hand, getting into a line and utilizing that down time makes the child feel that he's not missing out, or being told to wait, he feels like he's still actively doing something.

You'll be carrying all your supplies with you - meter, strips, glucose (fast and longer acting) and so there's no reason not to deal with whatever happens while in a line. The lines are really not a big deal.

 

[FaithsWish]

Just wanted to jump in and say that the Dexcom is a life-changer. I have 2 with T1D. My oldest is 20 and we didn't have the Dex when he was little. We got the Dex for Faith in July and I can't believe how it has improved our lives! I wish this had been available for my older son. We are sure lucky to live in a time when technology for T1D is improving so rapidly!

 

[Jen_in_NH]

I do agree with everyone who recommends Dexcom. We've been using it for 2 years now, and it really is a game-changer. No more wondering how fast his sugar is changing, how much food and activity are affecting him. We did 2 Disney trips without it, and 1 with it - much easier with it.

 

[dsneygirl]

Just wanted to jump in and say that the Dexcom is a life-changer. I have 2 with T1D. My oldest is 20 and we didn't have the Dex when he was little. We got the Dex for Faith in July and I can't believe how it has improved our lives! I wish this had been available for my older son. We are sure lucky to live in a time when technology for T1D is improving so rapidly!

I don't know how you mamas did it. We are so grateful every day we have so much at our fingertips (and grateful we have the means to pay for it) I know it will be so much better for his long term health.