carb counts

[dja14]

Our son is type 1 diabetic. He has been on Lantus and Novolog for about 2 years and mostly things are going okay (except he is a teen in constant change)

I am a little worried about our next trip, not really sure how to handle the changes we will have. He is completely insulin dependent and we add his carbs up and figure his ratios. BUT I am reading Disney won't/can't give out carb info? Is this true? I already use carb counters and have a Calorie King book but I really like knowing exactly if I can. I am already worried he will want to graze all day (and he is on a 1unit to 10g ratio so that really can't happen but I'd hate to take it all away)

We are staying off site so I can cook some meals, so he won't be eating all junk or anything, but it is vacation (and after all our medical problems with the kids over the last 5 years I would like to not cook everyday)

Any tips? I'll take them all

 

[SueM in MN]

Unfortunately, what you have heard is correct.
Many people have requested carb counts, but they will not provide them.

There are a number of threads about diabetes here and I'm sure you will also get some advice from the posters who are really expert in this.

 

[ttintagel]

It's true that they don't provide carb counts.

However, with two years under your belt, I bet you're better at figuring them out than you give yourself credit for. On my last trip, I stayed away from pizza and I did OK at estimating everything else. I had one low BG, but that was during a particularly active day and I caught it early. (I tested about twice as often as I do normally). I don't think it was from miscalculating.

Of course, the time-released insulin makes it a little more complicated. And how well I remember those teen years, when my metabolism seemed to be different every day!

 

[buffettgirl]

Our son is type 1 diabetic. He has been on Lantus and Novolog for about 2 years and mostly things are going okay (except he is a teen in constant change)

I am a little worried about our next trip, not really sure how to handle the changes we will have. He is completely insulin dependent and we add his carbs up and figure his ratios. BUT I am reading Disney won't/can't give out carb info? Is this true? I already use carb counters and have a Calorie King book but I really like knowing exactly if I can. I am already worried he will want to graze all day (and he is on a 1unit to 10g ratio so that really can't happen but I'd hate to take it all away)

We are staying off site so I can cook some meals, so he won't be eating all junk or anything, but it is vacation (and after all our medical problems with the kids over the last 5 years I would like to not cook everyday)

Any tips? I'll take them all

well, other than what the others have said, chances are with all the walking and activity you might find that it will be possible for him to have more food than he does at home. Also, some snacks are just too perfect to pass up, so he might be more than willing to take extra shots of novolog to get mickey bars I know when mine was on shots he wouldn't ever have a snack between meals at home because he didn't want an extra shot, but on vacation it was a totally different story. Even at a buffet he'd allow a shot at the beginning and then another at the end, just so he could keep eating.


You might also be able to up his lantus to allow a little more grazing (it's what a lot of parents of toddlers end up doing so that they're not constantly giving shots for every snack). The only issue there is that you'd have to be aware of it and end up feeding the insulin at times when he might not be hungry. But if you know he tends to graze, then go for it.

Or, if you thought he might like it, you could get pumping before you get on your trip. That is a game changer.

The biggest issue for us is that the heat and the walking causes more lows so we do end up with a lot of 'free' food. You might have the same "luck" (I hate to call it luck, but sometimes it's a happy bit of misfortune to need to eat some ice cream before bed to keep away a 3am low.

Actually, the biggest issue is that the food is pretty fatty, so many times we're dealing with fat spikes at night if we're not dealing with lows.

We test twice as much, and we've been known to pick a longer ride line to test and treat lows so that he doesn't feel like we're stopping and holding up all the fun. We've only had a few occasions when we've been in line and he's been low and every time the CM at boarding has let us wait, or directed us to get a FP from another CM so that we could return. Last trip we were on Rock N roller coaster and I hear my son in the seat next to me yell "I don't know if I'm low or just having a LOT OF FUN" . He was low. LOL.

we've never utilized a GAC, found zero need for it.

You'll have a great time. Remember, it's vacation. We try not to overly stress about the diabetes we just do the best we can. We test twice as much, but relax twice as much about food. And then we get back to hard core when we get home. It's what our endo advises. It's what every expert dealing with kids advise.

 

[dja14]

Our endo would have the same attitude I think. He always says he is a kid first and if wants ice cream he should be able to have some. My son loves food, wants to be a chef so he takes shots to eat, if that makes sense. He loves hiking so he can have free food (and that is what he calls it too) I just wanted to know how much a mickey bar is, if McD's can tell me fries or ice cream cone I would think Disney could. Guess I'll plan on estimating

We have been talking about the pump but so far he has tested the Omnipod and I really don't think that is going to work for him, we have tested 2 samples of it and he couldn't stand the first one and second one pulled loose after about a day. The other styles he said would be okay if he could take them off at night I think the tubing might be a problem, we deal with sensory issues too. So for now we are leaving it to him and he can still stand shots but he is really looking at the pump more, so maybe by next year he will have one. We can't test those though, so I am not sure about it. Kind of hate to rock the boat

I really appreciate all the encouragement. I know my kids are really excited and are all making plans to help him now (and we don't go til next Sept )

 

[disneyfaninaz]

Fortunately, Mickey bars come prepackaged so you have the nutrition information on the wrapper.

We have done both Disney World and Disneyland with our Type 1 DD. Eating at Disney is like eating out at any restaurant, you use your resources and make as close to an educated guess as you can. As previously mentioned, the extra exercise will help eat some of the carbs as well. Just make sure to test more often and have emergency snacks with you.

 

[buffettgirl]

Mickey bars have carb counts on them as they're pre packaged. Can't remember exactly the count, and we never had one on our last trip, but because they are individually packaged for.sale items they fall under packaging laws. That's one of the easier ones.

Feel free to ask anything. We've all been in your shoes, we've all had that first trip.

 

[Schmeck]

All CS restaurants have books with the menu/ingredients/etc available to guests. Even if they don't give carb counts, you can estimate given the ingredient list, right? That's what my mom does, anyways. The little book she carries around helps too. It lists commonly prepared foods.

One thing that would be helpful would be a list of foods other people have had that have not really fallen in line with common prep. My mom found everything to be easy to estimate, but I'm sure some here on the DIS have been more times than she has, and have had other experiences.

 

[ttintagel]

We have been talking about the pump but so far he has tested the Omnipod and I really don't think that is going to work for him, we have tested 2 samples of it and he couldn't stand the first one and second one pulled loose after about a day.

Just a slight derail - I had the same problem with the Omnipod when I first tried the sample, but then I read that putting a piece of Polyskin or Tegaderm on the skin and them putting the pod over that can help. I tried it, and it worked like a charm. Now I love my pods! So there is hope that if he decides to try it again someday, it might work for him after all.

 

[buffettgirl]

Just a slight derail - I had the same problem with the Omnipod when I first tried the sample, but then I read that putting a piece of Polyskin or Tegaderm on the skin and them putting the pod over that can help. I tried it, and it worked like a charm. Now I love my pods! So there is hope that if he decides to try it again someday, it might work for him after all.

yep, this. Also vet wrap works good for many kids. the OP didn't say how old her child was, but there are options. My son hated the pod though. Loves his pump.

 

[FBDM66]

I'm 30 years a Type 1 - diagnosed in my teens. I agree with what the PP's said, especially in that you will surprise yourself in realizing how good you've become at carb counting without the book (sight-counting is what I call it!). Many times I look things up in Calorie King and find the foods as close as I can to what I've ordered and I go from there. And yes, a little guess work does come into play, as PP said - you will surprise yourself on what your ability is to count unaided. This isn't something to rely on as a daily practice for life, but for the particular circumstances we find ourselves in it's knowledge that comes in handy.
I'm on the same ratio as your son. The most important thing I can pass along is test, test and test some more throughout the day. It's a pain in the fingertips but it helps to keep knowing where you are to be able to indulge in that Mickey Bar (love 'em myself!).
I do find that lows are more common on a Disney trip with all the walking, especailly for me at night - the bedtime test is essential to help avoid the middle of the night low when I wake up and eat the kitchen.
As a PP said, you're on vacation, don't let it stress you out. Remember, he will be fine. I know telling a parent of a Type 1 not worry is futile. Even well into adulthood telling my DM "don't worry" earned me major 'Mom look"! Have him test throughout the day and take each moment as it comes and rely on the knowledge that you've both gained since diagnosis.

Most importantly - remember to have a great time!

 

[dja14]

Thank you all for your advice. I feel better anyway. We have had to do the estimate thing before I just hated the thought of doing it for so long. But he pointed out himself he already gets corrections so it is not that big of deal and I guess it really isn't in the long run.

I also appreciate the pump tips . We are going to try the polyskin or something under it and see if that helps, no one had mentioned that (although we kind of thought it just wouldn't work so I didn't really ask). He is turning 13 and I know long term the pump would probably be better for him. He is also high functioning autistic and has a lot of sensory issues so we have to work with that too. We are very lucky that our endo has other autistic kids they have worked with so they understand and have suggested lots of helps. They do not have a sample of a pump with tubing that he can bring home and try so he wants to make a sample himself (he is a tinkerer) and see if he likes that better. I think if he can get adjusted to the tubing he will like it better because he can't stand stuff on his skin and the omnipod is kind of big. But I like it is waterproof

Thanks again!

 

[buffettgirl]

Thank you all for your advice. I feel better anyway. We have had to do the estimate thing before I just hated the thought of doing it for so long. But he pointed out himself he already gets corrections so it is not that big of deal and I guess it really isn't in the long run.

I also appreciate the pump tips . We are going to try the polyskin or something under it and see if that helps, no one had mentioned that (although we kind of thought it just wouldn't work so I didn't really ask). He is turning 13 and I know long term the pump would probably be better for him. He is also high functioning autistic and has a lot of sensory issues so we have to work with that too. We are very lucky that our endo has other autistic kids they have worked with so they understand and have suggested lots of helps. They do not have a sample of a pump with tubing that he can bring home and try so he wants to make a sample himself (he is a tinkerer) and see if he likes that better. I think if he can get adjusted to the tubing he will like it better because he can't stand stuff on his skin and the omnipod is kind of big. But I like it is waterproof

Thanks again!

You should be able to contact the rep from each pump company and have them come to your home. Every time we've looked at pumps the reps have left us with a pump for a week so we could 'play' with it. NOt hook it up but at least have it and hold it. I know Minimed and Animas will also schedule a saline trial. your child can actually wear the pump hooked up, filled with saline. I would bring that up to your doctor or your CDE that you'd like to do one or both.

 

[dja14]

Thank you, I didn't know that. He is really excited to try with the polyskin, so maybe he will be willing to try and get the best fit for him.

We have really tried to let him make as many decisions as possible. We figure he is really the one that has to live with it in the long term. He had one bad breakdown about a week after he was diagnosed (and he had been sick a couple months before that) and then he just sucked it up. When other kids make comments about not doing that (shots or finger pricks) he is really matter a fact about it. We are really proud of him.

 

[buffettgirl]

Thank you, I didn't know that. He is really excited to try with the polyskin, so maybe he will be willing to try and get the best fit for him.

We have really tried to let him make as many decisions as possible. We figure he is really the one that has to live with it in the long term. He had one bad breakdown about a week after he was diagnosed (and he had been sick a couple months before that) and then he just sucked it up. When other kids make comments about not doing that (shots or finger pricks) he is really matter a fact about it. We are really proud of him.

13 is a hard age for kids. I know when mine was dx at 5 it was a little easier since I made all the decisions, so getting a pump was one of those things that I picked. He rarely cares about it, and he totally sees the benefit, but it's not at all uncommon for kids in this age range to decide to take pump vacations. Most all go back in the end.

also, make sure you're visiting forums.childrenwithdiabetes.com There are quite a few of us from here over there. But it's truly the biggest group of parents on the web. Everything you ever wanted to know you can find from other parents.

 

[Belle & Ariel]

We actually lower our Levimir dose and subtract a couple units from our ratios to compensate for all the activity from walking and swimming at Disney.
We carry several simple sugars with us--I buy our 18 year old son fruits snacks like crazy because they travel so well.
And don't forget the Glucagon--back when Millionaire was at DHS, we walked out and son said he felt low. It took a couple minutes to make our way out with the crowd at end of show. I had him sit on a bench outside to check and he went into a seizure. Thankfully I had the Glucagon in my bag and he came to within minutes.
There is so much more activity at WDW that we have lots of lows.
Actually carb counting there is not different that any restuarant at home.