Diabetic Question: Before I go down the DAS road.

[Adora]

For a month now my travel buddy and I have been walking. We are both T1D. Every walk I go low, like low low. It doesn't seem to matter how much I eat before, I can't stay high. I have been making myself make my sugars go up twice my normal number in hopes of getting through the walk without my CGM freaking out half the walk and me eating snacks on the walk too.

So the reason I'm here; I am a well controlled diabetic, my A1Cs are excellent. I feel disappointed with myself that I might need something like DAS. It is only 70 degrees on the hottest day here yet, and there's always a breeze so I'm not even sweating that much. We go in August (I know I know). I have hats, and fans and cool towels but I don't know what to do. this will be my first theme park since I became diabetic years ago.

Is this something DAS can help with? I'm scared I'm going to spend my whole time consuming calories trying to keep my sugars up and becoming the *****iest travel buddy to be with (which is what I become if I'm low for an amount of time) and ruining my friend's first time to Disney (or the US for that matter).

Thanks for listening

 

[notatallmagic]

Everyone is different, but our experience (we were like you, and wanted to do Disney without DAS) showed that DAS was lifesaving and totally necessary. There are just so many factors that can impact blood sugar levels, and many are not at all predictable or scientific. It took a 40 with a double down arrow and our T1 losing conciousness on Splash Mountain (after being at 150 and then chugging 20 ounces of Gatorade) to learn our lesson. Best wishes on your trip, and hope things work well for you!

 

[SueM in MN]

I’m an RN, not a diabetic, so I don’t have any personal experience, but do have some advice.
Everyone is different; the common thing T1 people do report is that being in a park does make their blood sugars go down. Probably a combination of exercise, excitement, heat, humidity, stress - everything.
Some can go thru a park day with minor issues and might not need DAS. Others may react unpredictability and find DAS helps them deal with that. It’s not really a factor of how well controlled you are; it’s how your body is reacting to everything.

Think of DAS as another tool you can use to help you keep your blood sugars under control. Kind of like insurance

 

[Lilsia]

From what I think that I am hearing from you, the physical activity of walking seems to be the biggest issue, along with the heat and you seem to have to heat issue handled. Would renting an ECV help you with the walking issue? I would think about what your day will look like at the parks. Are you going to have issues walking from the busses, through the entrance and to the rides? If that bit of walking will be an issue, maybe and ECV would help. You can always park it and walk when you need to.

 

[jo-jo]

If you need to eat a lot to keep sugars up, would that mean you need a change in meds?

 

[Chickenlady]

I agree with jo-jo. If you use a pump, set a temp basal with a small decrease for the morning and adjust from there. If you are totally reliant on injections, decrease your morning shot and see how that does. Last thing you want to do is stuff yourself because you know you will go low.

 

[Lewisc]

You need to talk with your diabetic educator. Sounds like you need you dramatically reduce your basal pump settings or reduce your long lasting insulin when you walk. PP suggests making a small adjustment in basal setting. You need professional advice. You might need to reduce your insulin by half or more.

Eating a lot of food isnt a good long term plan.

 

[lanejudy]

I agree you really should speak with your healthcare provider and make some adjustment with your insulin. If the walking is relatively new exercise, or if the lows are now occurring during walks that didn't cause lows previously, something isn't working right.

As to DAS -- it may provide some flexibility to test/treat. But honestly as spouse and mother to T2s I can say the DAS will not reduce your walking and sun/heat exposure, it may actually increase the time you spend moving around outdoors. That's why it's going to be important to try and figure out what adjustment in insulin dosing may help prevent the lows in the first place.

 

[notatallmagic]

My T1 totally suspends all insulin (basal) many park days - you can only reduce insulin so much! She's talked about Disney with her endo, and this issue is common. Her endo actually suggested DAS. For us, DAS is helpful becuase it allows time in the shade and resting while lines tick down and it allows us to avoid standing in the direct sun and heat (which seems to drop blood sugar like a rock). Everyone is different, so consult your medical professionals and carry lots of low snacks. We couldn't do the parks without DAS - but everyone knows their own situation best.

 

[TXDisneyFan1]

My teenage son is Type 1 and this is our fourth trip to WDW and the first time we will be getting DAS for him. He went to summer camp a year ago and spent most of his time in the infirmary as they couldn't keep his blood glucose levels above 60. I don't know if it was the heat, exercise or his teen hormones causing this problem, but I was worried about it enough this time to get DAS for him.

Only you know yourself and what you need. Getting dangerously low in the parks or on a ride is a scary situation; maybe having DAS can have you more prepared to deal with your glucose levels and keep them more regulated.

 

[DisneyOma]

My teenage son is Type 1 and this is our fourth trip to WDW and the first time we will be getting DAS for him. He went to summer camp a year ago and spent most of his time in the infirmary as they couldn't keep his blood glucose levels above 60. I don't know if it was the heat, exercise or his teen hormones causing this problem, but I was worried about it enough this time to get DAS for him.

Only you know yourself and what you need. Getting dangerously low in the parks or on a ride is a scary situation; maybe having DAS can have you more prepared to deal with your glucose levels and keep them more regulated.

What did his doctor say would help?

 

[Lewisc]

I don't think DAS will give diabetics what they need most. Carb information for food. Immediate service at QS restaurants. Seating at your ADR reservation time, not 30 minutes later.

 

[Selket]

For a month now my travel buddy and I have been walking. We are both T1D. Every walk I go low, like low low. It doesn't seem to matter how much I eat before, I can't stay high. I have been making myself make my sugars go up twice my normal number in hopes of getting through the walk without my CGM freaking out half the walk and me eating snacks on the walk too.

So the reason I'm here; I am a well controlled diabetic, my A1Cs are excellent. I feel disappointed with myself that I might need something like DAS. It is only 70 degrees on the hottest day here yet, and there's always a breeze so I'm not even sweating that much. We go in August (I know I know). I have hats, and fans and cool towels but I don't know what to do. this will be my first theme park since I became diabetic years ago.

Is this something DAS can help with? I'm scared I'm going to spend my whole time consuming calories trying to keep my sugars up and becoming the *****iest travel buddy to be with (which is what I become if I'm low for an amount of time) and ruining my friend's first time to Disney (or the US for that matter).

Thanks for listening

I think several others including @SueM in MN is right on when she says that lows can be a problem for some and not others with type 1 - or some days and not other days. My son has type 1 since he was a toddler and we've also had problems with highs (insulin got too hot in the pump? changed set didn't help, etc)....but lows are the most common for him. A DAS can work well with other strategies....like trying to take advantage of any least crowded times (early entry or late night). Buying Genie+ and $ILL could also help along with a DAS.

Also he's never once had a problem getting a drink from a QS location or cart by walking up to the CM and telling them he is diabetic having a low and he stands there and drinks it (pays for it when they get a chance). If we had to wait to be seated for a TS reservation and he's going low we let them know - usually they've seated us quickly.. but being seated doesn't = food. Usually they've immediately gotten him a big soda to drink or juice.

I don't know if you do shots or a pump but adjusting your basal on a pump would likely help. With shots it is trickier because not taking the basal shot or reducing it may make you go too high at night. It's a good thing to ping back with your doctor's office about or post on some T1D boards/FB groups about.

I use an ECV in the parks because of my knees and it would get you off your feet from the walking but I think you'd be darn frustrated because you are otherwise active and healthy and can walk fine. It may be a good last resort option if you try everything else including the DAS and are still having problems with lows.

 

[notatallmagic]

Another tip after lots of trial and error - we carry powdered Gatorade packets to put into our water bottle, glucose tabs, fruit snax, and squeeze/individual peanut butter packets. The sugar helps bring up a low quickly; the peanut butter (fat/protein) will help hold it. My T1 is a swimmer, so the lows are something we've dealt with a lot; along with the impact of heat, humidity, and exercise.

It can be pretty uncomfortable to cycle from super low to super high (treating w/sugar or inevitably overtreating and rebounding high) so that's why the endo recommended new pump settings for Florida/vacation that were super low basal. When lows were still happening, she then recommended suspending during the heat of the day (no basal insulin) and that worked for my kid. Again, everyone is different. We joke that my Disney "cures" my kid's T1 while she's there, becasue she really needs virtually no basal insulin on park days.

 

[Adora]

Thanks everyone for your thoughts and observations. I am on a pump, I always turn off my insulin when I walk, so the bolus during the walk isn't affecting it. I have a feeling I'm gonna have to just turn it off for most of the time.
I have a request in to see diabetic education but that's not a quick quick process and as much as I love my GP he is clueless when it comes to specific diabetic things vs overall diabetes.
I have Genie+ already purchased for our trip, I pre-purchased last week because I know if I'm low (or rebounding from a low) it's hard to stand and usually involves a bathroom break.
I appreciate everyones input. I'm going to keep tweeking things and see if I can get a plan, hardest thing is I'm only active and heated during that time I'm walking so it's hard to get a read because for the rest of the day I need my insulin right now lol.
In saying all that is there a time line you have to get DAS figured out by? Like two months or a month before?

 

[bambialways4ever]

Thanks everyone for your thoughts and observations. I am on a pump, I always turn off my insulin when I walk, so the bolus during the walk isn't affecting it. I have a feeling I'm gonna have to just turn it off for most of the time.
I have a request in to see diabetic education but that's not a quick quick process and as much as I love my GP he is clueless when it comes to specific diabetic things vs overall diabetes.
I have Genie+ already purchased for our trip, I pre-purchased last week because I know if I'm low (or rebounding from a low) it's hard to stand and usually involves a bathroom break.
I appreciate everyones input. I'm going to keep tweeking things and see if I can get a plan, hardest thing is I'm only active and heated during that time I'm walking so it's hard to get a read because for the rest of the day I need my insulin right now lol.
In saying all that is there a time line you have to get DAS figured out by? Like two months or a month before?

Do you not have an endocrinologist? I'm fairly surprised a GP would treat someone with T1. Ours won't.

Also, have you ever heard of MODY? People with it have very little to no insulin needs and 80% of people with MODY are misdiagnosed as T1 or T2. Worth a google.

 

[lanejudy]

In saying all that is there a time line you have to get DAS figured out by? Like two months or a month before?

If you want to request DAS in advance, you may do so 2-30 days prior to your first park day. Or you can wait and request the DAS in-park. Both are the same program and works the same; if you do the advanced request you can also pre-schedule 2 attractions per day (kind of like the old FP+).

 

[Adora]

Do you not have an endocrinologist? I'm fairly surprised a GP would treat someone with T1. Ours won't.

Also, have you ever heard of MODY? People with it have very little to no insulin needs and 80% of people with MODY are misdiagnosed as T1 or T2. Worth a google.

It's Canada so maybe different? My GP takes care of basic stuff and diabetes Ed deals with the details.

Doesn't sound like me lol, I use decent amount of insulin; My pump will run out after 3 days. Hence why this is so frustrating. Seems something new. I don't remember going low like this last summer when I walked.

 

[TXDisneyFan1]

What did his doctor say would help?

Well, his doctor has been trying to get him on a pump forever, but we aren't gonna do that until he graduates from high school for our own reasons. So, she pushed the pump and she said it could have been any number of reasons why his glucose levels wouldn't regulate for most of the week. He was fine once he came home.

Of course, we will need to watch his levels more closely on this trip and have lots of things on hand to raise his levels in case he gets too low. I just don't want him passing out on Space Mountain because he didn't want to tell us he was low and thought he could make it through the line and ride.

 

[Adora]

he didn't want to tell us he was low and thought he could make it through the line and ride.

This would be me. Standing in the standby lane eating a snack praying all goes well because I would feel total guilt out of having to get out of line to sit down if we had been waiting any great amount of time.

So seems it might be more when I increase my body temp. I gardened today in the heat and my sugars went down. Barely moving an inch while cleaning up the flower garden. Oh well...more info to be armed with!