T1D and Carb Counting

Dayzy

Mouseketeer
Joined
Jan 17, 2011
The search is only pulling up very old threads for me. DS is newly diagnosed and I'm having trouble finding nutritional information for WDW menus. Am I looking in the wrong place or are these available if I ask at the restaurants? We're trying to make the next trip as normal as possible for him. Thanks!
 
The search is only pulling up very old threads for me. DS is newly diagnosed and I'm having trouble finding nutritional information for WDW menus. Am I looking in the wrong place or are these available if I ask at the restaurants? We're trying to make the next trip as normal as possible for him. Thanks!

I'm sorry to hear your son is newly dx'd with type 1. One of my sons was dx'd with it when he was 26 months old and we have been going to WDW since that time and he's almost out of high school at this point! I totally agree with all gap2368 said. What I did when my son was first dx'd was to get a nutritional scale - which you can find on amazon - or simply a scale that measures in grams and ounces. I would use that and/or carb counting books (this was before apps) to weigh out his food. Although it is a steep steep learning curve in some ways ... eventually you get better at learning what a cup of pasta looks like - or a half cup of rice, etc. You'll also eventually memorize how many carbs generally in this kind of cookie or donut or scoop of ice cream and so on. In fact this is a good guessing game to play with your son (guess the carbs!!) - we still do that sometimes lol!

You won't find carb counts - you'll have to guess. I try to let my son eat what he wants and cover it with insulin. It's a work in progress always. A DAS is also an option and might help depending on his age and recent diagnosis and all the guessing - you can PM me if you want more info on that.

I also suggest the Children With Diabetes conference if you can - this July it's actually a little later in the month than the 4th - you will GREATLY benefit by going if you can - it's a family conference so definitely for your son and lots of great education for both of you. I also have to recommend going on an insulin pump - as soon as you can - and getting a Dexcom continuous glucose monitor. I greatly prefer the t-slim Tandem pump and Dexcom over other options but whatever you pick - do take a look at those. I put my son on a pump when he was still 2 years old - as soon as I could after he was diagnosed - made it SO much easier. CGMS didn't exist back then but he also went on one as soon as they came out in the USA. The CMGS is life changing - no finger sticks either! :)

All the best to both of you - I know how hard it is as a parent. Feel free to PM me anytime.
 
My DS was dx at age 13 and we went to WDW about 9 months later so he was still very new, no pump and just getting the hang of carb counting. You will get good at guesstimating very quickly and I agree calorie king helps a ton in the beginning. With all the waking and heat at WDW you will most likely find his insulin needs will greatly decrease. He uses very little insulin when we are at the parks and literally eats a lot.(the kid can out eat me and DH put together and never gains an ounce) I recommend more frequent blood sugar checks and take extra snacks for lows. My DS had several the first day and a half before we figured it all out. I did worry WAY too much and really did not have too. My DS was made to do injections for the first year before doing a pump and went with the omnipod because it was tubeless and he was a very active athlete. He has been very happy with it but refuses to wear a CGM. He said 1 thing attached is enough and he will just keep doing fingersticks( I think he is crazy and since he is away at college would feel better knowing I had access to his readings) and since his A1C runs about 7 I don’t push it too much. Good luck with your DS. Even though it is a terrible disease my DS has been a real trooper and is very responsible which makes it much easier.
 
You won't find carb counts - you'll have to guess. I try to let my son eat what he wants and cover it with insulin. It's a work in progress always. A DAS is also an option and might help depending on his age and recent diagnosis and all the guessing - you can PM me if you want more info on that.

A DAS has nothing to do with carb counts - why would you suggest a DAS?
 
He is not saying the DAS will help with carb count. It is two different sentences

I think the disconnect is that the OP asked about help with carb counting, and mentioned nothing about needing help with lines, which is what the DAS is for. I was wondering the same thing, as the OP voiced no concerns about the ability of her child to wait in line or anything like that. But, any excuse to ask for a DAS, I guess.
 


I think the disconnect is that the OP asked about help with carb counting, and mentioned nothing about needing help with lines, which is what the DAS is for. I was wondering the same thing, as the OP voiced no concerns about the ability of her child to wait in line or anything like that. But, any excuse to ask for a DAS, I guess.
Yes I know so people will use any excuse to get a DAS even if not needed.
 
Yes I know so people will use any excuse to get a DAS even if not needed.
To be clear, I'm not saying that's the OP's plan at all, but I do wonder why for so many people, the DAS seems to be the "go-to", even when line accommodations are not needed.
 
I've found that the general carbohydrate-estimating skills I've developed worked very well in the Disney restaurants. I think you'll find yours are better than you think! The key for me is lots if extra testing (which isn't always easy if your insurance company is stingy with the strips, but that's a whole other conversation).
 
To be clear, I'm not saying that's the OP's plan at all, but I do wonder why for so many people, the DAS seems to be the "go-to", even when line accommodations are not needed.
all I can say is that for me the DAS make managing my type one very hard I was taken to the ER one time will at Disney give two IV with sugar in them and a lot of sugar oral and even after a few hours was barry over 100. without he DAS I was out in the sun a lot more walked a lot more ( also my other disabilities I tend to walk more so that did not help) so for some the DAS really does not help. If I did not have some SPD and other things I would not use the DAS and I really do not see how it helps you can treat a low in line ( or get a stroller as a wheelchair tag would do much more) I just do not see how the DAS could really help.
 
I've found that the general carbohydrate-estimating skills I've developed worked very well in the Disney restaurants. I think you'll find yours are better than you think! The key for me is lots if extra testing (which isn't always easy if your insurance company is stingy with the strips, but that's a whole other conversation).
there is a cheap meter Walmart called roloin ( i think that is the spelling) it is like $25 for the meter and $10 for 50 test strip. if you need to do more testing then your insurance will cover then this is a good alternative
 
To be clear, I'm not saying that's the OP's plan at all, but I do wonder why for so many people, the DAS seems to be the "go-to", even when line accommodations are not needed.

I think part of the reason its the "go-to" is the name "disability access". people hear that and think "i'm disabled, therefore I need and/or deserve the special disability pass." I can see where a DAS would be useful for a newly diagnosed diabetic who isn't experienced at regulating their sugars and needs to test more frequently. Especially for some of the really long lines that are up to 4 hours long, that would probably be too long to go without testing, and some people wouldn't be comfortable or able to test in line. But I am also sure there are diabetics who would be fine with waiting in line. That's part of the reason is needs based, not diagnosis based. I do have a question about treating low sugars in line: can you bring food/drinks into line? or would a diabetic need to bring glucose pills into line with them?

EDITED BY MODERATOR TO FIX FORMATTING FOR QUOTES.
 
Last edited by a moderator:
To be clear, I'm not saying that's the OP's plan at all, but I do wonder why for so many people, the DAS seems to be the "go-to", even when line accommodations are not needed.

I think part of the reason its the "go-to" is the name "disability access". people hear that and think "i'm disabled, therefore I need and/or deserve the special disability pass." I can see where a DAS would be useful for a newly diagnosed diabetic who isn't experienced at regulating their sugars and needs to test more frequently. Especially for some of the really long lines that are up to 4 hours long, that would probably be too long to go without testing, and some people wouldn't be comfortable or able to test in line. But I am also sure there are diabetics who would be fine with waiting in line. That's part of the reason is needs based, not diagnosis based. I do have a question about treating low sugars in line: can you bring food/drinks into line? or would a diabetic need to bring glucose pills into line with them?
you can bring food in line with you I have had pretty much full meals in line ( I graze all day long) someone that needed to treat a low could eat anything with sugar in it like smarties skittles and so much more or could drink juice

andI know some that that has no need for a DAS but since he uses a wheelchair full time he thinks he needs one I once asked him why and he just held up his arm and says come on you can tell I am disabled

EDITED BY MODERATOR TO FIX FORMATTING FOR QUOTES.
 
Last edited by a moderator:
I think part of the reason its the "go-to" is the name "disability access". people hear that and think "i'm disabled, therefore I need and/or deserve the special disability pass." I can see where a DAS would be useful for a newly diagnosed diabetic who isn't experienced at regulating their sugars and needs to test more frequently. Especially for some of the really long lines that are up to 4 hours long, that would probably be too long to go without testing, and some people wouldn't be comfortable or able to test in line. But I am also sure there are diabetics who would be fine with waiting in line. That's part of the reason is needs based, not diagnosis based. I do have a question about treating low sugars in line: can you bring food/drinks into line? or would a diabetic need to bring glucose pills into line with them?

Bolding mine, but I think you're exactly right.
 
My DS is not disabled. He does have diabetes. It does not define who he is. He is a typical active young man. He was an all Ohio pole vaulter in high school and he get an academic scholarship and did track at a division 1school with a team type 1 scholarship his freshman year. I realize there are circumstances a type 1 may need a DAS but I don’t believe that it is a necessity for most. Just my opinion. Sorry OP this thread really got off topic. Just make sure you have some good diabetic education and have the nutritionist help you with learning guesstimating. Your DS should be fine.
 
OP here - for now we're going to put off any plans to go to WDW because of the newness of this all and trying to figure out what is best for DS. One person here mentioned that a DAS actually makes things worse for her because of more walking and more sun, and I just want to clear something up that we didn't know either until this weekend. We assumed that more activity and being in the sun and heat would cause lows. It turns out that this doesn't happen for everyone. DS was camping with his Scout troop and even with not having much shade (came home with a little sunburn on his neck) and all the camping activities, his lowest blood check was 90. Now today it's raining and he's at school and there's no outside recess. The school nurse called me at noon because he dropped to 53 and needed juice to recover. So I'm learning that not everyone's needs are the same. I'm finding that DS needs to eat on schedule or he starts to crash but my friend's daughter can eat dinner at 9 pm and she's fine.
 
It will take a while to figure things out. Yes he may respond differently to different things and you may not be able to always keep him in the “normal range” but you do the best you can and come prepared for any situation. We always found that school (brain working hard) required less insulin than summer when yes, it was hot, but he also spent more time lying around doing nothing (typical teen) and when he’s dehydrated even slightly his blood sugar goes up. The first sign of illness is a blood sugar reading over 200 ( he never goes that high unless he Is sick sick or has a pump malfunction) I know your concerned, but don’t put life aside, especially the fun things like vacations to WDW. You never said his age, but he probably is already angry with diabetes and the world for doing this to him. ( mine was) The more things you put off or cancel due to diabetes will only make him resent it more. We never stopped any aspect of his/our lives. He went to football practice the day after getting out of the hospital. Our children’s hospital gave us that advice. With your son being newly diagnosed, the doctors will be tweaking his insulin a lot over the next year or so until he is done honeymooning ( where his body will continue to occasionally produce his own insulin) The conference others have mentioned sounds like an awesome opportunity. We have never been fortunate enough to go. I know others may have differing opinions but I am very passionate about not letting diabetes win!!! You will always be fighting with his needs which will always be changing. Nobody can control it, we just do the best we can.
 
A DAS has nothing to do with carb counts - why would you suggest a DAS?

I think the disconnect is that the OP asked about help with carb counting, and mentioned nothing about needing help with lines, which is what the DAS is for. I was wondering the same thing, as the OP voiced no concerns about the ability of her child to wait in line or anything like that. But, any excuse to ask for a DAS, I guess.

Yes I know so people will use any excuse to get a DAS even if not needed.

I mentioned the DAS because I think - based on my substantial experience - that a DAS for a child newly dx'd with type 1 could be one of several useful tools for this family trying to tour Disney for the first time after diagnosis. I asked the OP to PM me for more information. Whether or not it would have been useful (they postponed the trip it sounds like - directly because of the difficulty of dealing with type 1) is something that family would decide based on the child's needs - and some of that they probably couldn't know until they get there and actually start touring the park. I mentioned several things in my post that the OP didn't specifically ask about (such as my recommendation on pumps, CGMS, CWD conference and so on) but no one seems bothered by that.

I'm troubled at the "any excuse to ask for a DAS" type comments. One would think that long time posters to this forum and board would know enough to know that assistance is given for needs - and two people with the same diagnosis can have very different experiences with that diagnosis and very different needs depending on multiple factors. I've encountered this attitude before when posting about type 1 diabetes - perhaps your experience is different than mine - which is great - but this does not mean that your experience is the model for everyone else anymore than mine is.

To remind people what Sue wrote in the FAQ:

Do certain diagnoses qualify for DAS?
No.
Having any specific diagnosis doesn't qualify or not qualify someone for DAS; there is no list of "appropriate" diagnoses for DAS. Also, the CMs do not have medical training, so a specific diagnosis does not really mean much to them.
The DAS is based on needs that the person has related to a disability, not what their diagnosis is.
The diagnosis is not really that important because people with the same diagnosis can have very different needs.
DAS is given based on needs and the accommodations that meet those needs.
This is not a Disney rule, this is the way that the ADA is written. According to the ADA, accommodations are not given based on the diagnosis or specific disability; they are given based on needs that are related to a disability.
For example, my youngest DD has cerebral palsy as her main diagnosis. Some people with cerebral palsy don't really need anything special; some might walk with a cane/crutches or use a wheelchair, but don't need anything besides an accessible line. Those people would not need a DAS.
Some people, like my DD, have additional needs that are not met just by having her wheelchair in line. I go to Guest Services and explain my DD's needs to the CMs there to get DAS issued to her to help meet her needs..
 
Back on topic or thread will be closed....
Comments regarding DAS and especially implying people are asking for DAS unnecessarily are off topic and will be deleted.
DAS is not given or not given based on diagnosis. It is up to the individual to decide and make their case to Guest Relations on why it may be helpful to them.
While there are people with diabetes (or any other diagnosis) who do not need DAS, there can be others with the same diagnosis that have needs it may help with (especially a new diagnosis that they are just learning to manage).
 

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