First time traveling to WDW with 5YO with diabetes. Will have soft-sided cooler for insulin, not sure the ice pack will last all day so noting First Aid locations in each park. Any tips or tricks for consideration? Is specific documentation (Dr’s note) required for the syringes? Do we have to go through DAS? Thank you!
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Paging @ryan1
He can help
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First of all, I want to thank you for all you do for your 5YO! I was diagnosed at 9, and I can only imagine how much work and worrying my mom went through taking care of me!
At 53, obviously I have a bit of experience now, although I now have an insulin pump…but I do remember the years of syringes!
You can leave your insulin at the first aid locations, as you mentioned, which definitely recommend. But you shouldn’t need to worry about short stints out in the heat as long as it is brief enough. Since I have a pump, my insulin can’t be kept refrigerated throughout the day, and is exposed to the hot temperatures. This means it is very very important to try to monitor BG levels more diligently to ensure insulin isn’t breaking down.
The long acting insulin will be your primary defense, since you can give that and never expose it to heat for very long. It is the short acting that you will want to keep at least some with you. If you use vials, you might try to have a few partially filled vials rather than one or two full ones so that you can swap them out each day. If you are using a pen, that becomes a little harder.
I have found Humalog to be less susceptible to heat than Novolog. Even in my pump, when I use Novolog, I can’t go more than 3 days before I start to see it losing effectiveness. Humolog I can go 5+ days. But at the temperatures in the parks in summer, Make sure you have one of those cooling packs you wear. The kind that you soak in cold water and you wear it like a fanny pack, or something similar. That will be enough. Remember that you aren’t generally staying outside at WDW all that long. Most attractions you are spending time inside in the A/C.
You probably don’t need to overthink it too much. Just have extra insulin and supplies with you and you should be good. Leave any insulin except what you need back in the hotel fridge.
If you use a CGM, remember that you can get false readings when dehydrated, so make sure you 5YO drinks plenty of fluids. I am have also found that exhaustion can mask usual signs of being low, so be on the lookout for unusual crabbiness! It could be just tiredness, but it could be an undetected low!!! Keep glucose tabs with you!
If you have any specific questions, I can help as best as I know how.
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Love all of this, Ryan! Thanks for responding to the call!
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I don’t think Drs notes would be needed. Never been an issue. Diabetes and needs for syringes is commonplace. I think most restrooms if not all will have a sharps disposal.
I don’t know anything about DAS, as I have never used it, but I wouldn’t think diabetes would qualify.
I should add that highs as just as much if a concern as lows. Again tiredness can be confused with having highs!
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Thanks for lighting the bat signal! 
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You are amazing! Thank you so much for the details and the explanation, feeling much better about the planning. Bless you!
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Got it, thanks again!
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Don’t forget you can’t have loose ice in the cooler. Bag it up before putting it in.
If you’re staying onsite, bell services can keep the insulin if you’re concerned about keeping it cool.
The heat can affect BG levels, test more frequently to get a feel for the effect.
Have fun!
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I hadn’t seen a restroom without a sharps container, though a couple of them were full (the door wouldn’t open). So I’d have a little bit of a backup plan for used needles just in case.
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Thanks for the info!
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Hello @jmong. I’m not on the forums very often, but I’m also happy to help. My DD was diagnosed T1d while on a trip to WDW in 2018.
DAS will not be granted for diabetes; we tried.
Accurate carb counts will be your biggest struggle while at WDW. Unless the food is packaged, Disney will not provide carb counts, and food seems different everywhere you go on site. It is manageable, though. DD usually undervalues the carbs and then corrects as needed. This helps to minimize lows due to calculation errors.
As @Ryan said, watch for the effects of the heat. Combined with unusual amounts of physical activity, it will mess with levels.
Let me know if you have any other questions I can answer. Just be patient with me getting back to you.
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This is good advice. I’d rather have to correct highs later, than treat lows!
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It is so hard to judge Disney carbs.
We started making a list years ago. She is now old enough to manage on her own, but I remember referencing my notes file every meal.
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Thanks so much for the notes, very helpful! If you think of anything else, our trip is in Sept so this helps the planning. Much appreciated!
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There is an instagram account called mylesabovet1d centering on a mom, T1D 6 year old, and diabetic alert service dog that frequent Disney World.
One accommodation they use is getting a “Stroller as a wheelchair” tag from Guest Relations. This allows the stroller to go through lines, making it easier to keep supplies with you while also keeping activity for the child down.
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I can second this – my sister has a daughter who is T1 as well and they used to get DAS but when the changes were implemented a few years back, they were no longer accomodated.
My niece has been to the Urgent Care more than once in Orlando thanks to symptoms exacerbated by dehydration, so make sure to keep the child cool and hydrated throughout the day (good advice for anyone!).
All that said, having a fun trip and hitting all the highlights is absolutely possible! Just be flexible and realistic about the limitations and you will have a great time.
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Dehydration and hypos are probably the biggest risks.
You mention syringes so she’s maybe not on an insulin pump. If she is, then I would set the basal level higher than normal, so you’ll get alerts earlier. Or use the Activity settings.
Otherwise test / check more often more often and again I would use a different threshold for treating a hypo.
I know here in the UK we use a different scale for BG readings. But for instance a hypo is usually defined as a BG of 4 or less, but for PE many kids would make sure they were at 7 or above.
I would treat WDW park time as PE and manage BG levels accordingly. For example if BG is less than 7 at any time give a snack and maybe treat for a hypo if under 5. Does that make sense?
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Great notes, thank you!
Thank you!!