Type 1 Diabetes and Disney

[anorman]

We have been to Disney every year for the last 5 years....this will be our 6th trip with our daughters coming up in just 2 weeks. However, this will be our first trip since our DD10 has been diagnosed with type 1 diabetes (insulin dependent). I know there are people out there who have travelled this road before me. Any advice of any kind would be helpful.

I have been told about the Frio bags for keeping insulin cooler in the August heat but what about the glucometer (accucheck)? I know they do not function well in the cold (the battery freezes) but does the heat affect their functioning as well?

For those of you with Type 1 diabetes or children with Type 1 diabetes, how does the heat affect the usual blood sugar readings? I am very worried about potential for lows and the extreme August heat possibly masking the symptoms (i.e. increased heart rate, sweating, weakness, dizziness, etc.) since the symptoms for being overheated are very similar to those of low blood sugar. How have you coped with this?

 

[buffettgirl]

We have been to Disney every year for the last 5 years....this will be our 6th trip with our daughters coming up in just 2 weeks. However, this will be our first trip since our DD10 has been diagnosed with type 1 diabetes (insulin dependent). I know there are people out there who have travelled this road before me. Any advice of any kind would be helpful.

I have been told about the Frio bags for keeping insulin cooler in the August heat but what about the glucometer (accucheck)? I know they do not function well in the cold (the battery freezes) but does the heat affect their functioning as well?

For those of you with Type 1 diabetes or children with Type 1 diabetes, how does the heat affect the usual blood sugar readings? I am very worried about potential for lows and the extreme August heat possibly masking the symptoms (i.e. increased heart rate, sweating, weakness, dizziness, etc.) since the symptoms for being overheated are very similar to those of low blood sugar. How have you coped with this?

You've come to the right place. First of all, don't worry! You will have an amazing time. You didn't say how long it's been since your daughter's diagnosis so I don't want to overwhelm you with stuff. First, use the search feature and you'll find a lot of threads on type 1 where we've listed tons of info on products and that sort of thing.

Anyway, we're summer disney people and we've never really had an issue with the heat beyond what we normally have at home. Just stay hydrated (that's a tip for everyone). We make use of Disney's policy on giving free tap water (cups of ice water) and we're good. An otherwise healthy 10 year old isn't going to really have trouble with the heat as long as she's hydrated - and let me say this - your daughter IS healthy. Just missing a hormone that you now supply to her. But otherwise she's perfectly healthy. Don't let anyone make you think she's not.

We do check probably twice as much while we're in the parks, and we use lines as 'down' time because they're generally shaded and inside. Normally we make good use of fast passes and a good touring plan so we generally don't encounter anything longer than 20 minutes, but we've purposely gotten in longer lines as they're a good place to wait out lows without feeling that we're just sitting there doing nothing. And you will be checking often because all the walking will bring her down. So just check, and check and check. That's my best advice.

Make sure you're carrying plenty of supplies with you- including lots of glucose tabs or juice or whatever she uses for lows. We haven't had any issue with overheating meters, no need to worry on that count. And we've never had any trouble keeping all supplies with us.

We find the food to be overly fatty at disney, no matter what it is, and without proper carb counts you'll need a good app on your smartphone or a calorie king book to determine carbs. But the fat spikes hours later gets us every time. The only good thing is that the fat in the food offsets the middle of the night lows. So things like an ice cream later at night is a wonderful treat.

Good luck! you'll do great. Don't let diabetes overwhelm your trip. Don't let your daughter think that it's changing the trip in any way. This is your first trip there with Diabetes. Let it set the tone for all the future trips.

 

[Janet Hill]

We haven't had any issue with overheating meters, no need to worry on that count. And we've never had any trouble keeping all supplies with us.

My husband did have his meter overheat once; however, we were at Aquatica and the meter was in a locker (probably a lot hotter than just normally carrying with you). So it can happen, but I don't think it's typical.

 

[aliceclones]

My girls have had T1 now for about 4 years, and we spend A LOT of time outside, hot and cold. The only time we had a meter malfunction was during an all day outdoor swim meet. It was between 103-109F from 10am on. Both girls meters flipped out around 3 or 4 in the afternoon. The meters were in the shade the whole time, but we moved them to the cooler after that. After being cooled down for about 30 minutes they started working again. The girls dexcoms never missed a beat though. So unless you are in EXTREME heat, and wont be going into any AC to cool down, I wouldn't worry too much about it.
Test often, take extra supplies and HAVE FUN!

 

[anorman]

My daughter has been diagnosed since this past Sept......about 11 months ago (she was 9). It has been a bit of a roller coaster but we are getting better at it.

We do plan on checking her frequently and using lines as down times is a good idea. One question though, I have heard people talk about the heat spoiling insulin.....how do you know that the insulin is spoiled? Does it look different or does it stop working?

 

[aliceclones]

First off... I am sending you hugs . That first year as a D momma is ROUGH. I am sure you have heard that it gets easier, and in someways it does. Or maybe not easier, but more normal. Hang in there!

As for spoiled insulin. We have had a bottle or 2 go bad over the years, but it is really not normal. If your DDs insulin is ever cloudy, chuck it. Otherwise you really wont know that it is bad unless you try another vial and get a different result. Is your DD pumping or MDI? If she is pumping, then dont worry too much about the insulin in the pump. Her body needs will also help keep the insulin from over-heating (when she gets hot she will go in the shade, or AC etc.) The exception to that rule is hot tubs. Dont let the insulin reservoir go in a hot tub! If she is MDI, then keeping the vial with a frio bag all day will be good, or in your hotel room. Manufacturers suggest not letting the insulin get over 85F. Have I been guilty of letting insulin get too hot and still using it? Yes. Have those been my problem vials? No. Still, better to be safe than sorry on vacation. Especially since you will most likely be getting wonky numbers anyway.

The recommendation I hear over and over is pack 2x as much as you think you will use, and always keep spares with you. Inevitably it is the trips that I pack light on supplies is when we have an issue. A full vial of insulin dropped and shattered on the ground, an insertion kink. And then guess who gets to run to the 24 hour pharmacy. right, ME!


edit: bad insulin usually still works, just not as well. You will have lots of high numbers

 

[anorman]

First off... I am sending you hugs . That first year as a D momma is ROUGH. I am sure you have heard that it gets easier, and in someways it does. Or maybe not easier, but more normal. Hang in there!

As for spoiled insulin. We have had a bottle or 2 go bad over the years, but it is really not normal. If your DDs insulin is ever cloudy, chuck it. Otherwise you really wont know that it is bad unless you try another vial and get a different result. Is your DD pumping or MDI? If she is pumping, then dont worry too much about the insulin in the pump. Her body needs will also help keep the insulin from over-heating (when she gets hot she will go in the shade, or AC etc.) The exception to that rule is hot tubs. Dont let the insulin reservoir go in a hot tub! If she is MDI, then keeping the vial with a frio bag all day will be good, or in your hotel room. Manufacturers suggest not letting the insulin get over 85F. Have I been guilty of letting insulin get too hot and still using it? Yes. Have those been my problem vials? No. Still, better to be safe than sorry on vacation. Especially since you will most likely be getting wonky numbers anyway.

The recommendation I hear over and over is pack 2x as much as you think you will use, and always keep spares with you. Inevitably it is the trips that I pack light on supplies is when we have an issue. A full vial of insulin dropped and shattered on the ground, an insertion kink. And then guess who gets to run to the 24 hour pharmacy. right, ME!


edit: bad insulin usually still works, just not as well. You will have lots of high numbers

Thank you for you supportive words. Every bit helps. She is still on needles 4 x a day for now and we are hoping to get the pump within the next year. I will keep an eye out for cloudy insulin thats supposed to be clear....thanks again and we will be packing LOTS of supplies!

 

[buffettgirl]

First off... I am sending you hugs . That first year as a D momma is ROUGH. I am sure you have heard that it gets easier, and in someways it does. Or maybe not easier, but more normal. Hang in there!

As for spoiled insulin. We have had a bottle or 2 go bad over the years, but it is really not normal. If your DDs insulin is ever cloudy, chuck it. Otherwise you really wont know that it is bad unless you try another vial and get a different result. Is your DD pumping or MDI? If she is pumping, then dont worry too much about the insulin in the pump. Her body needs will also help keep the insulin from over-heating (when she gets hot she will go in the shade, or AC etc.) The exception to that rule is hot tubs. Dont let the insulin reservoir go in a hot tub! If she is MDI, then keeping the vial with a frio bag all day will be good, or in your hotel room. Manufacturers suggest not letting the insulin get over 85F. Have I been guilty of letting insulin get too hot and still using it? Yes. Have those been my problem vials? No. Still, better to be safe than sorry on vacation. Especially since you will most likely be getting wonky numbers anyway.

The recommendation I hear over and over is pack 2x as much as you think you will use, and always keep spares with you. Inevitably it is the trips that I pack light on supplies is when we have an issue. A full vial of insulin dropped and shattered on the ground, an insertion kink. And then guess who gets to run to the 24 hour pharmacy. right, ME!


edit: bad insulin usually still works, just not as well. You will have lots of high numbers

Totally agree. Over 8 years, we've really only had one bottle of insulin that I think was bad. And even then, I'm not 100% sure. Insulin is a lot more stable than you think. If you're using a frio pack that will keep it at a comfortable temp. If it goes in room temp, it will stay room temp. Without a frio, you should have no trouble just wrapping the vial in a cold, wet paper towel and sticking that in a ziplock back.

If it spoils (big IF) you'll just see some uncharacteristic highs. The problem with this is that you've got a growing girl on your hands..also prone to uncharacteristic highs. LOL. So I always tell people that spoiled insulin is at the bottom of a mental checklist when trying to figure out what's going wrong.

But, we've never lost insulin at disney - even prior to pumping when we'd have to carry both the novolog and the lantus around with us. Never lost any to the heat.

And others are right about meters - meters left in cars, in lockers, etc can all overheat. But it's not going to be a problem at Disney.

 

[aliceclones]

Totally agree. Over 8 years, we've really only had one bottle of insulin that I think was bad. And even then, I'm not 100% sure. Insulin is a lot more stable than you think. If you're using a frio pack that will keep it at a comfortable temp. If it goes in room temp, it will stay room temp. Without a frio, you should have no trouble just wrapping the vial in a cold, wet paper towel and sticking that in a ziplock back.

If it spoils (big IF) you'll just see some uncharacteristic highs. The problem with this is that you've got a growing girl on your hands..also prone to uncharacteristic highs. LOL. So I always tell people that spoiled insulin is at the bottom of a mental checklist when trying to figure out what's going wrong.

But, we've never lost insulin at disney - even prior to pumping when we'd have to carry both the novolog and the lantus around with us. Never lost any to the heat.

And others are right about meters - meters left in cars, in lockers, etc can all overheat. But it's not going to be a problem at Disney.

Agree!

The growing girl part is SOOO hard! Mine are 10 and 12, growing what seems to be an inch a month, and eating me out of house and home. My 12yo is also on higher doses of insulin right now than most adults we know, and she only weighs 92lbs! Those hormones can REALLY do a number on insulin absorption! The only time I ever even check if a vial is bad, is if both girls are having high numbers that wont come down. Even then it is the last thing that I check. Over the last 4 years with 2 T1's we have had 1 bad vial, and it was bad, as soon as we switched to another vial both girls responded immediately. But that was out of hundreds of vials that we go through!

 

[ttintagel]

The heat hasn't affected my meter or my BG's, but you're absolutely right that it's reeeeeally easy to not notice symtoms of highsor lows amongs the symptoms of overheating, fatigue, overstimulation, hunger, excitement, distraction, etc. that go on during a Disney trip.

The way I deal with it is to test A LOT more thatn usual. Easily more than twice as often as usual. Basically, whenever I have the opportunity or whenever the thought occurs to me. I bring more than twice the number of strips I would use at home.

Next time I go I'll be using the Dexcom CBG monitor, and I'm anxious to see how much that will help!

 

[buffettgirl]

Agree!

The growing girl part is SOOO hard! Mine are 10 and 12, growing what seems to be an inch a month, and eating me out of house and home. My 12yo is also on higher doses of insulin right now than most adults we know, and she only weighs 92lbs! Those hormones can REALLY do a number on insulin absorption! The only time I ever even check if a vial is bad, is if both girls are having high numbers that wont come down. Even then it is the last thing that I check. Over the last 4 years with 2 T1's we have had 1 bad vial, and it was bad, as soon as we switched to another vial both girls responded immediately. But that was out of hundreds of vials that we go through!

I remember at one point someone telling me that teenage boys can take like 100u of insulin a day at the height of puberty. I sort of laughed since my son was still very young at the time. He's only 13 now and he's around 60u a day. It's hysterical and horrifying all at the same time when I think to when we first started pumping and had basal rates of .1u per hour and now I see rates in the middle of the night at 1.75u per hour, it makes my head hurt. I also laugh - one time at disney we were at breakfast at Crystal Palace and he got a "whopping" 2.5 unit bolus at breakfast. That was huge for him even though he had probably eaten a few hundred g of carbs. I laugh now. (I hope we're not scaring our new poster lol)

 

[aliceclones]

I remember at one point someone telling me that teenage boys can take like 100u of insulin a day at the height of puberty. I sort of laughed since my son was still very young at the time. He's only 13 now and he's around 60u a day. It's hysterical and horrifying all at the same time when I think to when we first started pumping and had basal rates of .1u per hour and now I see rates in the middle of the night at 1.75u per hour, it makes my head hurt. I also laugh - one time at disney we were at breakfast at Crystal Palace and he got a "whopping" 2.5 unit bolus at breakfast. That was huge for him even though he had probably eaten a few hundred g of carbs. I laugh now. (I hope we're not scaring our new poster lol)

I remember when my girls freaked that they were getting more than a 2u bolus (they would say it hurt!) . Now we see the occasional 30u bolus and my girls dont bat an eye! There have been several days this summer that my DD12 has had 100u basal/bolus combo total . The endo just keeps telling me it is only a number!

 

[DisneyDoc1895]

My daughter is 12, dx in the spring of last year. Last summer we did have her meter shut down due to heat on Castaway Cay - it was in a duffle, now we keep it in a soft lunch like cooler inside the duffle and it has been fine since.

We use the Hydro Mouth Wide Mouth Water Bottle, 18oz from Eastern Mountain Sports. In it we can put 3 insulin pens, along with a flexible ice pack that can curl around the pens. My wife made some soft foam cylinders to encircle each pen and this keeps the ice from touching the pen directly. Stays cool for at least 12 hours, rated to 24 hours but we never tried it that long. It is very hard but not that heavy. We call it the 'football' - as in who is carrying the football today.

DD is really good at WAGging and generally it is no more of an issue than any other day out.

Ken

 

[dsneygirl]

I remember at one point someone telling me that teenage boys can take like 100u of insulin a day at the height of puberty. I sort of laughed since my son was still very young at the time. He's only 13 now and he's around 60u a day. It's hysterical and horrifying all at the same time when I think to when we first started pumping and had basal rates of .1u per hour and now I see rates in the middle of the night at 1.75u per hour, it makes my head hurt. I also laugh - one time at disney we were at breakfast at Crystal Palace and he got a "whopping" 2.5 unit bolus at breakfast. That was huge for him even though he had probably eaten a few hundred g of carbs. I laugh now. (I hope we're not scaring our new poster lol)

We are going on our first trip post dx in Sept. My sugar baby is very young though (20 months) and a full day for him is about 5units, lol.

We have already noticed this summer that his BGs are all over the map when mixed with things like the pool , splash pad beach etc. So along with all our supplies we are packing a huge helping on patience. His needs come first and any commando, rope drop etc can wait. Nothing else is more important.

We also plan to check a lot as his lows (like a 2.9) are almost asympomatic and hard to recognize.

I'm also bringing our scale for things like fruit at a buffet. I'm sure we'll get some strange looks but you gotta do what you gotta do.

 

[buffettgirl]

We are going on our first trip post dx in Sept. My sugar baby is very young though (20 months) and a full day for him is about 5units, lol.

We have already noticed this summer that his BGs are all over the map when mixed with things like the pool , splash pad beach etc. So along with all our supplies we are packing a huge helping on patience. His needs come first and any commando, rope drop etc can wait. Nothing else is more important.

We also plan to check a lot as his lows (like a 2.9) are almost asympomatic and hard to recognize.

I'm also bringing our scale for things like fruit at a buffet. I'm sure we'll get some strange looks but you gotta do what you gotta do.

On our first disney trip after diagnosis, I also brought a scale. It was the only way I could keep my sanity and control about something. I kept thinking, if I just can get the fruit right it will be better than nothing. I found a nice travel sized one on amazon, rather than a full sized one. I know many people who tote along collapsible meausruing cups as well. With a 20 month old it's really important to get it right, it's a bit different with a 13 year old now - if I'm off by 5 or 10 carbs it's not as much of an issue.

 

[dsneygirl]

On our first disney trip after diagnosis, I also brought a scale. It was the only way I could keep my sanity and control about something. I kept thinking, if I just can get the fruit right it will be better than nothing. I found a nice travel sized one on amazon, rather than a full sized one. I know many people who tote along collapsible meausruing cups as well. With a 20 month old it's really important to get it right, it's a bit different with a 13 year old now - if I'm off by 5 or 10 carbs it's not as much of an issue.

I already have the collapsible measuring cups the scale we use at home isn't ridiculous and we have to carry a backpack anyway (T1 supplies/diaper bag) plus we have the stroller as well.

I am working on my packing list and it is a little ridiculous but life goes on. We will never be light packers again

 

[buffettgirl]

I already have the collapsible measuring cups the scale we use at home isn't ridiculous and we have to carry a backpack anyway (T1 supplies/diaper bag) plus we have the stroller as well.

I am working on my packing list and it is a little ridiculous but life goes on. We will never be light packers again

well, as he ages you will be able to not feel like a pack mule, but you'll always have stuff with you. That's the sucky part. Even now in the parks, I still carry the supplies. He carries his own bag with water, or whatever he wants, but I figure I might as well be the one inconvenienced (and to blame if something goes missing). But, we do carry less than we did early on and I'm more able to judge what exactly we'll need and that at least is nice. Sort of like with a baby - you carry less now than a newborn, right?

 

[dsneygirl]

well, as he ages you will be able to not feel like a pack mule, but you'll always have stuff with you. That's the sucky part. Even now in the parks, I still carry the supplies. He carries his own bag with water, or whatever he wants, but I figure I might as well be the one inconvenienced (and to blame if something goes missing). But, we do carry less than we did early on and I'm more able to judge what exactly we'll need and that at least is nice. Sort of like with a baby - you carry less now than a newborn, right?

True the bottles and formula were just gone before the insulin arrived (he was 14 months at dx).

 

[aliceclones]

well, as he ages you will be able to not feel like a pack mule, but you'll always have stuff with you. That's the sucky part. Even now in the parks, I still carry the supplies. He carries his own bag with water, or whatever he wants, but I figure I might as well be the one inconvenienced (and to blame if something goes missing). But, we do carry less than we did early on and I'm more able to judge what exactly we'll need and that at least is nice. Sort of like with a baby - you carry less now than a newborn, right?

Same.... We are better judges now of what we are likely to need, and what we can wing until we get back to the hotel room/home. As for little ones, I always said the smaller they are the more you need to pack! When our kids were infants I couldn't figure out why my DH and I could share a suitcase for a weekend trip, but the littlest one need three bags plus a pack and play!

But i honestly can say I admire those of you who do D with tiny ones. My girls were 6 and 9 when dx'd and they were already pretty darn independent and able to do tons on their own. Now they almost completely manage their own care, I only help with insertions and i:c / basal changes. Those of you who are pancreas' for tiny ones, you are my heroes!

 

[buffettgirl]

Same.... We are better judges now of what we are likely to need, and what we can wing until we get back to the hotel room/home. As for little ones, I always said the smaller they are the more you need to pack! When our kids were infants I couldn't figure out why my DH and I could share a suitcase for a weekend trip, but the littlest one need three bags plus a pack and play!

But i honestly can say I admire those of you who do D with tiny ones. My girls were 6 and 9 when dx'd and they were already pretty darn independent and able to do tons on their own. Now they almost completely manage their own care, I only help with insertions and i:c / basal changes. Those of you who are pancreas' for tiny ones, you are my heroes!

I agree. At 5, my son learned quickly what low felt like and was able to at least verbalize "I don't feel good". It has to be so hard with a little one who can't say that. I tell all my newly dx families (in our local support group) to push for CGM for their little ones. I can't imagine how much easier that would make things. It makes it easier for ME with a 13 year old, that's for sure.