Type 1 Diabetic first time at Disney since diagnosis - tips and suggestions

[cesariofamily]

My Daughter is a T1D and this is our first time at Disney since the diagnosis. She has an Omnipod and CGM. Any helpful hints or suggestions?

 

[gap2368]

bring extra supplies, of everything, talk to her dr and see if they would like or suggest her change her insulin does a good number of people go low. make sure she eats stay hydrated

do not put the insulin in the fridge as it can freeze, use a Frio if you think you need it

I will add I am a T1D on a pump for a number of years and go to Disney quite often ( like used to go once a month. On average I will spend about 50 days in the world a year.) so if you have any question ask.

 

[Happyinwonerland]

We frequently vacation with a dear friend, one of her daughter hss Type 1 diabetes. We get the DAS pass for her. We tried it without the pass at first, but she kept having to get out of lines because the heat and extra activity made her blood sugars go up and down like a roller coaster. Her mom is diligent about making sure she stays hydrated and watches her carbs, and always has fruit snacks or another quick carb on hand just in case.

And yes, bring extra supplies. We accidentally left a vial of her long acting insulin in a hotel room and didn't realize it until the next day. Thankfully her mom was smart and had another bottle.

Oh and there are needle disposal boxes in most of the restrooms.

 

[SueM in MN]

The restaurants do not provide carb counts. Many bring a carb counting book or have an app on their phone so they can estimate carb counts.

 

[smokeyblue]

My ex is diabetic. At home it was a struggle to keep is BG down. At Disney he had drastic lows. The routine that helped was eating a carb/protein balanced breakfast at the resort and than having an energy bar (Larabar or Cliff) once we got through the gates of the park because he was finding that he would drop low maybe 30 minutes after we got to the parks. He had to lower his basal rate most of the trip and wouldn't require as much correction. Make sure you have some good quick carbs. He would always carry around a little bottle of ocean spray juice and sugary hard candies (make sure its something that wont melt). The other thing is that despite the CGM, he needed to test more frequently because of the drastic swings; make sure you bring plenty of extra strips and don't shy away from testing when you think you need to. It will be an excellent learning experience.

 

[anneboleyn]

My daughter is 11 and was diagnosed with T1D when she was 5, and we go to Disney pretty much every year, so it is definitely doable and you guys will have a blast

I look up carbs on my phone, which makes it super easy. Sometimes we also revert back to shots and take a break from the pump while there, just because we visit the water parks and swim a lot and she gets tired of all the suspending service/disconnect/reconnect stuff. But Omnipod is different and doesn’t have tubing, right? So that might not be an issue for you at all.

We have never gotten the DAS pass. We just never felt as though we needed it. I always have some snacks in my purse for her in case she feels shaky.

OH and we use this for holding her insulin pen, insulin vials and Glucagon and it is amazing...keeps it nice and cool even in the insane September heat:
http://www.frioinsulincoolingcase.com/

Hope that helps! Let me know if you have any more questions...I know planning a Disney trip while managing your kid’s diabetes looks super overwhelming but I promise it isn’t as daunting as it seems

 

[Selket]

It may help to know how old your daughter is - advice is different for a 2 year old vs. a 12 year old or even a 16 year old (who may be going off independently of you). One of my kids was dx'd with type 1 when he was 2 years and has been pumping since. We go to WDW often.

So...depending on the age of the child...always good to keep fast acting glucose with you. My son is old enough now to go off on his own so I make sure he has money (or MB can charge to the room). I think once he was going low and asked a CM for a soda which was promptly given - then he paid for it once he was back on track. Some trips he seems to run high - sometimes low - it's a fun combo of heat plus lots and lots of food plus sometimes having an infusion set that went wonky (maybe the heat sweating it partially off or a water ride) - and sometimes the CGM goes to ??? and it's harder to keep track of his numbers. Always carry a set change or two, bottle of insulin and some syringes, pump cartridge change stuff and a test kit (even with the CGM). I have a small bag I keep in my backpack or he keeps. That way we don't have to go back to the room if we have a problem - something stops working worst case we have syringes, insulin and a test kit lol! I have a Frio but generally we've thrown the insulin bottle in the bag and not had a problem with it but a Frio is a good idea.

If you have a toddler - I can add more info on that scenario - I'm guessing not since it's not as common.

He eats what he wants and boluses - we're all on vacation. Is your child newly diagnosed? If so - that's also a somewhat different approach perhaps depending on how soon you are after diagnosis. My son gets a DAS - he's old enough now to get it on his own. Some trips it has been a lifesaver -mostly he uses it sparingly as we go so often we know how to tour the parks effectively, get FP's and make more FP on the fly after we use our first 3, use the single rider line, and we don't have to ride some things every visit - etc. - lol. A good touring plan is always your best option - DAS is useful when things go off the rails. We've also bought special event tickets (so way fewer ppl in the park) to get our fill of rides without waits (and usually early morning/late night so it's also not as hot) - that's a nice option but can get pricey. If you have questions about the DAS, then PM me directly.

 

[cesariofamily]

T

bring extra supplies, of everything, talk to her dr and see if they would like or suggest her change her insulin does a good number of people go low. make sure she eats stay hydrated

do not put the insulin in the fridge as it can freeze, use a Frio if you think you need it

I will add I am a T1D on a pump for a number of years and go to Disney quite often ( like used to go once a month. On average I will spend about 50 days in the world a year.) so if you have any question ask.

Thank you! I think we have extras at the ready and bought a special cooler bag for insulin. Thank you for your reassurance!

 

[gap2368]

T

Thank you! I think we have extras at the ready and bought a special cooler bag for insulin. Thank you for your reassurance!

How old and how long since your DD was DX, if she is young enough for a stroller you can have this tagged as a wheelchair to bring in line with you.

 

[lizzytizzy]

My Daughter is a T1D and this is our first time at Disney since the diagnosis. She has an Omnipod and CGM. Any helpful hints or suggestions?

How did your daughter and you like the Omnipod and CGM? Were the BG scores pretty much accurate? My daughter recently got diagnosed with T1D and I'm curious about them. TIA

 

[Selket]

How did your daughter and you like the Omnipod and CGM? Were the BG scores pretty much accurate? My daughter recently got diagnosed with T1D and I'm curious about them. TIA

I'm sorry to hear your daughter was recently diagnosed with T1 - it's a hard road at first. One of my sons was dx'd at 26 months old and has been pumping since he was 2 and on a cgm since they became available (seems like almost 10 years now ... he is 17). He uses a Dexcom and we love it - I would not hesitate for a second in recommending it. It has improved to the point that you can pretty much go without finger sticks at all now. I can't speak to the Omnipod since my son seems to be allergic to teflon cannulas (he has to use a steel needle infusion set so he uses the Tslim pump).

Are you aware of the Children with Diabetes. conference? They hold it every summer - usually at Disney World. There's one coming up in July 2019 at Coronado Springs: https://childrenwithdiabetes.com/conferences/friends-for-life-orlando-2019/. It's a family conference and very helpful and supportive for all - especially the newly diagnosed. Feel free to direct message me if you prefer.

 

[gap2368]

Are you aware of the Children with Diabetes. conference? They hold it every summer - usually at Disney World. There's one coming up in July 2019 at Coronado Springs: https://childrenwithdiabetes.com/conferences/friends-for-life-orlando-2019/. It's a family conference and very helpful and supportive for all - especially the newly diagnosed. Feel free to direct message me if you prefer.

I can not recommend this conference enough it is amazing they do offer scholarships if you need financial help. You can get a demo pump if you like for omni pod ( they normally have them at the JDRF walks) I could not keep it on as it was too big for me and I took it off at night in my sleep

 

[ttintagel]

Hey! Fellow T1 Dusney-loving Omnipod user here! Lots of great advice above I'll try not to be toooo repetitive.

I bring twice the supplies I would normally need for that period of time. all medications and supplies go in my carry on and purse - nothing in checked luggage.

I carry both fast and slow carbs in the parks. Glucose gel, juice, granola bars, peanut butter crackers.

I test probably twice as often; it's really easy to mistake the symptoms of a high or low for overstimulation, dehydration, overheating, or fatigue, or to not notice symptoms because if those things.

Stay hydrated!

Temporary basal rates are your friend when you're going to be walking a lot - get your doctor or medical professional's advice on that.

if you're staying at a Disney Resort, Mousekeeping will bring a sharps container to your room. There are also sharps containers in the restrooms in the Parks.

 

[tinkerjo]

Mom of a type1 podder here. Everyone here has great advice and I wish we would have found it before my DS first trip. Our first trip to WDW after diagnosis was very stressful(unnecessarily) I was so worried about counting carbs and the heat that I worried myself to death. I will confirm what others have said, he went low a lot in that trip. We found that he only needs about 1/2 the insulin on park days.
We have never done DAS, there has never been a need. He doesn’t go high unless he is sick or really dehydrated. We are lucky he doesn’t bounce up and down like some people do. Just make sure you have extra snacks/juice etc on hand. My DS is very picky what he will use for a low so it’s better to keep it in hand( part of that irrational thinking from the low) also I never hear it mentioned on these boards but we always tell security before they check in his bag that he is diabetic and needles/lancets in the bag.
One last piece of advice- bring a dry bag or at least a baggie for the PDM. They are NOT waterproof!!!! (We found out the hard/very expensive way)

 

[bopper]

Get a "Frio" wallet/pack to hold insulin/test strips in (if you need to bring them).

 

[Talking Hands]

Always carry testing supples, insulin and emergency carbs with you. Test frequently. Learn her hypo and hyper signs. TEST TEST TEST

 

[bopper]

..and trust your gut...one time we were in Hawaii and my Type 1 husband kept showing high BG. He stopped eating carbs, took more insulin...it still showed high. At some point he kind of became unresponsive..which we know is a low sign, not a high sign. He gotten taken to the hospital and some OJ and a sandwich later, was fine. So pay attention to hypo/hyper signs and not just numbers.

 

[EEva]

How did your daughter and you like the Omnipod and CGM? Were the BG scores pretty much accurate? My daughter recently got diagnosed with T1D and I'm curious about them. TIA

Hello! My DD12 uses both the Omnipod and G6 Dexcom CGM. We love them both! she was diagnosed just before her 8th bday. we started using them about 8 months later?

I find the CGM quite accurate, and this new version does not require finger pokes, not even for calibration! You can and should still test her blood if things seem off, though. This will be wonderful for your peace of mind. And you won't have to wake up and do BG checks in the night. The alarms will let you know if she is going high or low.

We also love using the Omnipod. This is the only insulin pump we have used. She is a dancer, so we weren't sure how a pump with tubing would work with tights and leotards. We do have some pods that error out or fall off before the three days are up. But Insulet is great to replace them if you call with the details.

I also highly recommend the Friends for Life conference. I was told about it here on this board! We attended the one in Disneyland last year and will be going this year to WDW. I helps my daughter realize she is not alone, we get great resources and support.

Please let me know if you have any specific questions about the cgm and omnipod. I'd be happy to share!