T1D and Carb Counting

[Selket]

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.

I was away on vacation so I didn't see this until yesterday. I think you've hit the nail on the head - that not everyone's needs are the same. My son was dx'd at such an early age that we've had to deal with toddler through teen. There are many times when I swear I could do the same thing twice and get completely different results. When he was first diagnosed we really had to stick with a more rigid meal plan and eating times and many other things and this fortunately got easier over time. There's such a range of treatments (from older insulins like NPH and regular up to new ones like Apidra) and some are on shots, some pumps, some also have a continuous glucose monitor - and I also think the body responds differently depending on hormones and so on - there's no one size fits all when it comes to this disease. He may also be on the "honeymoon" phase (they used to call it this anyway) where the body is still making some insulin - which doesn't always make it easier to figure out how to bolus for food and basal...but it could me that his needs may change over the next few months to a year. When my son was dx's he didn't need any overnight basal insulin for a few months - but then his numbers slowly started creeping up. We also had to use diluted insulin because his bolus needs were so small - a half a unit could bring him down way way too much. Of course now as a teenager it's quite the opposite (he needs more insulin than he may as an adult). Best to him and you and your family and hopefully you can fit the Disney trip in when things settle down some. Feel free to PM me anytime!

 

[ttintagel]

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.

Yes, one of my favorite bits of diabetes education was YDMV: Your Diabetes May Vary.

 

[Lewisc]

I did a search and this is the most recent thread I could find. Has anyone been able to get dietary information from Disney? Getting accurate carb information is helpful for diabetics. You can estimate but that only goes so far. Some restaurants add a fair amount of sugar to their marinara sauce. Others don't.

Apps such as myfitnesspal list nutritional information for many restaurants. I see Il Mulino, Shulas, Earl of Sandwich, Rain forest Cafe....I beleive Disney consinders themselves legally exempt since Disney consideres each each restaurant as a separate entity. Many menu items are standardized. I'm cynical enough to think Disney doesn't want to disclose the nutritional content foods such as Tonga Toast.

edited to add I sent Disney an email.

 

[DisneyOma]

I did a search and this is the most recent thread I could find. Has anyone been able to get dietary information from Disney? Getting accurate carb information is helpful for diabetics. You can estimate but that only goes so far. Some restaurants add a fair amount of sugar to their marinara sauce. Others don't.

Apps such as myfitnesspal list nutritional information for many restaurants. I see Il Mulino, Shulas, Earl of Sandwich, Rain forest Cafe....I beleive Disney consinders themselves legally exempt since Disney consideres each each restaurant as a separate entity. Many menu items are standardized. I'm cynical enough to think Disney doesn't want to disclose the nutritional content foods such as Tonga Toast.

edited to add I sent Disney an email.

There's a law in the US that you have to include carb counts? I'd never trust a carb count given on an app. They can change recipes, substitute on a whim, etc. I guess chain restaurants don't change things too much (as it's a lot of prepackaged/frozen stuff) but our local restaurants don't do carb counts, and change ingredients all the time.

 

[daisy2013]

I did a search and this is the most recent thread I could find. Has anyone been able to get dietary information from Disney? Getting accurate carb information is helpful for diabetics. You can estimate but that only goes so far. Some restaurants add a fair amount of sugar to their marinara sauce. Others don't.

Apps such as myfitnesspal list nutritional information for many restaurants. I see Il Mulino, Shulas, Earl of Sandwich, Rain forest Cafe....I beleive Disney consinders themselves legally exempt since Disney consideres each each restaurant as a separate entity. Many menu items are standardized. I'm cynical enough to think Disney doesn't want to disclose the nutritional content foods such as Tonga Toast.

edited to add I sent Disney an email.

Chain restaurants with over 20 locations are required to provide calorie counts but not other nutritional information. So even if your argument that each location should be considered a branch or one chain, they do not need to provide information beyond calorie counts- including carb counts.

 

[Selket]

I don't think you're going to have much luck getting carb counts. When my son was first dx's with type 1 we used a book and a nutritional scale to figure out carb counts for foods at home. Phone apps replaced the book but we still use the nutritional scale (at home). Over time we've gotten good at estimating the carbs for food and being able to eyeball a serving of this or a cup of that, etc.

As for carb counts and calorie info, etc. provided by restaurants - they are really just based on a certain portion size. We all know that we never get the same amount of rice twice at Chipotle - sometimes I get 1/3 less but they give me a ton of guac - other times they skimp on something else. While it's good to have a jumping off point - I think the best way to go about it is to learn what is typical carbs for a serving of this or that and go from there.

 

[cwis]

I have T1D. Not wanting to give guidance to others, just a few tips that works for me.

First, as others pointed out, getting a carb count can be tricky. In addition, a typical day at Disney involves walking/standing a lot, which I find also has an impact on how much insulin I need. Plus, I cannot resist Dole Whips. Measuring my blood sugar level often (like, every 30 or 60 mins) really helps: I know where I am and I can anticipate.

Regarding the DAS, remember you can ask for it and not use it until you need. How often does your son needs to go the bathroom when he has hyperglycemia? I know I wouldn't feel confortable entering a line posted at 30+ or above if my blood sugar level is too high.