Diabetes - How about a carbohydrate counting thread?

[Zurg]

Do they actually sell the strips? I can't find the strips except by mail order.

I looked online and sadly it doesn't look like the sale is online. I'd encourage anyone to pick up one of those meters if they take insulin and can run ketones.

We picked up meters at the store. We didn't check for the ketone strips there as we were not interested in paying cash if we could avoid it.

We had or Doc Rx the K strips and ran them past the insurance, who were not exactly up to speed on what they are but did approve them (woohoo). We are having our local pharmacy order in the ketone strips as they don't carry them as a stock item (but now that we get an Rx for a few packs a month for each kid I think they may see the value in stocking them.)

This is great because the K strip things are insanely expensive.

I will write a review of the K meter on http://DisneyWithDiabetes.com once we have some experience with them.

Unrelated. I asked our Doc about the Abbott Navigator continuous BG system. He said to ask back next visit Abbott was coming out to talk to them about it. I volunteered to be hes beta testers That think look so COOL I can't wait to try the kids on it.

 

[Zurg]

There is a free carb counting Palm aplication from the FDA at:
http://www.nal.usda.gov/fnic/foodcomp/srch/search.htm

 

[JohnneyB]

Hello everyone. I am a T1 and have been pretty successful with this whole carb counting thing. I just try to make it a big game with rules that do seem to change from time to time. My nutritionist turned me on to "The Calorie King" food counter when I was diagnosed, and it helped me have a solid start. Advantages of this book:
1. It includes restaurant items. (Helpful when comparing and estimating)
2. It includes shortcuts and tips for counts
3. It is small enough to take with you and use during the day
I would welcome any questions. It's good to know that there are some go-getter wdw fans with a can-do attitude out there!

 

[Chloesmom]

.

Unrelated. I asked our Doc about the Abbott Navigator continuous BG system. He said to ask back next visit Abbott was coming out to talk to them about it. I volunteered to be hes beta testers That think look so COOL I can't wait to try the kids on it.

We are in the process of switching DD over to a pump and we talked to the Abbott rep about the continuous BG system. Insurance does not cover it.. no how and no way. I was rather bummed because it sounds so good. I did not even ask about price because I am a single mom and I am 99.99% sure this is not in our budget. he said that they are working on getting them on insurance plans and that I should keep in touch.

 

[Zurg]

Sound like you were talking to a Mini Med rep, Abbott's isn't on the market yet, Mini Med's is but it isn't covered by insurance. Mini Med's is expensive.

I hear Abbott is coming out soon and is trying to position their CBGM as a replacement for strips and are working for insurance coverage as a replacement. We will see whne it get FDA approval.

Good luck with the pump we have two kids on Animas pumps and and love'm.

If you not aready there, American Diabetes Associations Parents boards:

http://community.diabetes.org/n/pfx/forum.aspx?nav=messages&webtag=adaparents

 

[Zurg]

.. "The Calorie King" food counter..

Yeah that is a good book. We got a copy somewhere along the line.

You can also get it as a Plam application. Nicely done but not cheap either particularly if you are getting a copy for mom and dad's palm.

 

[jayandstacey]

Sound like you were talking to a Mini Med rep, Abbott's isn't on the market yet, Mini Med's is but it isn't covered by insurance. Mini Med's is expensive.

I hear Abbott is coming out soon and is trying to position their CBGM as a replacement for strips and are working for insurance coverage as a replacement. We will see whne it get FDA approval.

Good luck with the pump we have two kids on Animas pumps and and love'm.

Holysmokes - First, I'm SUPER HAPPY to have found this thread.

Second, yeah, we are in line for the continuous BG monitoring set from Cosmo. Here's what we're told:
- expect it around the end of this year (too bad, we're WDW in Nov!)
- Expect a $1-2000 initial cost, and about $2000 year in supplies

I can't wait for this. The meter will transmit to two places - the pump and to a remote alarm elsewhere. This means we can sleep a whole night without a midnight check! If she goes low (or high) the alarm next to our bed will sound and we'll be there.

PS - the "made in america" show hosted by John Ratzenberger (who has been in all the recent Pixar films!) visited the Cosmo plant in one episode to show how pumps were made. It is the only segment of that show I've ever seen where everyone is crying at the end, as pump wearers meet the people that carefully assemble their pumps... Good stuff...

Jay

 

[jayandstacey]

Hello everyone. I am a T1 and have been pretty successful with this whole carb counting thing. I just try to make it a big game with rules that do seem to change from time to time. My nutritionist turned me on to "The Calorie King" food counter when I was diagnosed, and it helped me have a solid start. Advantages of this book:
1. It includes restaurant items. (Helpful when comparing and estimating)
2. It includes shortcuts and tips for counts
3. It is small enough to take with you and use during the day
I would welcome any questions. It's good to know that there are some go-getter wdw fans with a can-do attitude out there!

Agreed. It is sad (and surprising) that Disney seems to make carb counts classified. But we can guesstimate with the book in hand.
We've had such good luck that we tried giving our 5 year old T1 daughter some cotton candy recently. That didn't go so well... but otherwise the book is a boon for getting you in the ballpark.

And as someone else mentioned, (as advice to others) adjust for the heat and exercise. Lay off on the basal rates but check the sugars often - 12 times a day maybe.

 

[Chloesmom]

Sound like you were talking to a Mini Med rep, Abbott's isn't on the market yet, Mini Med's is but it isn't covered by insurance. Mini Med's is expensive.

I hear Abbott is coming out soon and is trying to position their CBGM as a replacement for strips and are working for insurance coverage as a replacement. We will see whne it get FDA approval.

Good luck with the pump we have two kids on Animas pumps and and love'm.

If you not aready there, American Diabetes Associations Parents boards:

http://community.diabetes.org/n/pfx/forum.aspx?nav=messages&webtag=adaparents

You are correct. It was Mini Med. I got something at the hospital about Abbott though and thats why I was mixed up. I had a HUGE stack of stuff after my first pump class. The Abbott does sound like it may be easier to swing cost wise. Either way I am excited about the advancements in the short time DD has been diagnosed ( just under a year now).
Have you ever had trouble with ketones on the pump? Our nurse educator made it sound like a big problem.

 

[Selket]

Have you ever had trouble with ketones on the pump? Our nurse educator made it sound like a big problem.

If you have a problem with the pump or the infusion set and don't catch it soon then the ketones happen fast. It is easier to catch problems in the daytime than at night. It is my opinion that if you have a child (at least a younger child - I don't know about older kids - like teens - who test themselves) on the pump that you should check them at least once overnight.

I have probably related somewhere here the story of my 4 yr old son's infusion set going bad overnight in April on our trip to WDW (of all places!). We caught it in time to prevent him from going to the hospital but just barely. It is a long story and what kept us from catching on quicker (we test him at least 2x a night - like at 1am and 4 am) was that he set seemed to be working somewhat and his numbers didn't get super high. However he woke up very sick and vomiting. When we took off his old set there was a big bruise and a bit of blood around the insertion area. This was NOT there when he went to sleep so how that happened - I have no idea! I'm certain he didn't fall off the bed (we had bed rails and my husband was sleeping with him).

Anyway - the pump is nothing to be afraid of but you do have to be extra vigilant about problems. I guarantee you that probably no one here tests their kid as many x's a day as we test William and still we didn't catch the problem. So it can happen! Fortunately I have a Precision Xtra meter - which is a ketone blood meter - that uses strips like blood glucose strips but tests ketones rather than blood glucose. I highly recommend one as the urine strip ketone readings are hours behind what the ketones levels are in the body at the present time. With it we knew exactly what W's ketones were and could see them clearning out. With urine strips it would have taken 12 hours to show them cleared but with the blood strips I knew they were gone in 5 hours.

I love the idea of the CGMS but the Minimed one is H*U*G*E. The piece that actually sticks into the skin is as big as the infusion set - or larger. There just isn't that much real estate on a 4 year old's body for those big sets. I'm hoping they will get smaller very soon and in another year or two I can get William on one - at least by the time he is ready for a new pump (in 2 more years we can get another through insurance - and he'll just be 6 yrs old!).

I'd love to hear your experiences with the CGMS - I haven't run across any parents yet with kids on them and have only seen references to older kids and not anyone under 8 anyway.

 

[Zurg]

Have you ever had trouble with ketones on the pump? Our nurse educator made it sound like a big problem.

Ketones are not a big problem but I have to echo that they do come on faster. More testing is the answer.

With a pump everything comes at you faster but you get the oppertunity of better control so it is a good trade off.

We were cautioned about putting on a new set just before bed time as the only way to know if it works is to test. Sometimes you need to go with a new set thne and over night testing is a must.

We don't test every night but you do have to go through periods of adjustment that requires o/n testing.

Sets do go bad from time to time or your forget a bolus or what ever and the numbers jump up quick.

 

[LovePug]

I don't have a pump, but I need to take an insulin shot every time I eat something because of the type of insulin I'm on. For me, it's a guess on the dosage from trial and error over the last couple of years (that's when I went on this type of insulin), depending on what I eat. I wish I could help with the dosage, but it seems that I'm different than other people in how much coverage I need . I see a lot of people with a "sliding scale" and it's nothing like what I need.

 

[DumboDash2006]

Well, I finally got around to calling 407-560-3551 to give Disney a list of my nephews food allergies and to ask about carb counts. They understood WHY I need carb counts for dd but said they can't give them. I really think it may be as much a liability issue as anything. The person I spoke with said they couldn't give that as they just don't want to give out the wrong info as they can't be exact. Hmm....

She did say they are available for pre-packaged items and if we ask for ingredients they will tell us and at TS at least they can look on packages of ingredients for carb counts and bring them out to show us if needed etc. Really I will probably just go with my Calorie King book and guesstimate most of the time.

 

[SplashMom]

This is a great thread! I have two type 1 teens and both have been pumping for about three and a half years. When in Disney, we find that we can pretty much guess the amount required to bolus. Since there is so much walking, we find they need to suspend their pumps every now and then until we get adjusted. Of course, we test more often when on vacation and always change their sets in the morning. We also have had sets that didn't work properly, for whatever reason. Usually if that happens, we can catch it pretty quickly. Pumps have certainly made our lives more flexible! They wear minimed pumps and we are currently looking at the newest version with the continuous monitor. I'll keep you posted if we get them!

 

[Zurg]

.. They understood WHY I need carb counts for dd but said they can't give them. I really think it may be as much a liability issue as anything...

I have heard the same double speak. I suggest it be thought about it this way:

"They understood the need for my well chair bound kid to use ramps of side walks but said they can’t give them..."

"They understood the need for a subtitles or sign language interpreter for my deaf child but they said they can't...."

Those would be seen as totally ridiculous and they of course are so is the assertion that they can’t do carb counts. They HAVE software that calculates it. They choose wild guessing by parents over reasonably accurate calculations on their part.

 

[Selket]

They should be able to come up with carb info for counter service places in the same spirit as McDonalds has all their info on the burgers and fries, etc. And things like Dole Whips and the bakery items. Of course you still have to WAG some things like the fries at McDonalds (and other places) because they don't always give you the same amount and then my son only eats part of that anyway

How does the Disney catering come up with the carb info for the breakfasts and lunches served at the Children With Diabetes conference?

And did I read a post on the ADA boards that Mrs. Zurg is considering attending the CWD conference next summer at WDW?

 

[jayandstacey]

What options do we have to change this? I mean, the food industry fought against package labeling...McDonalds didn't want to do it...Yet clearly the law and the public sentiment is on the side of making information available - at least for the asking.

99% of guests will ignore the info, just as at McDonalds. And yes, Disney will have some negative feedback the first month after they release the info (6 o'clock news cub reporters talking about the high fat content in a Dole Whip). But like ramps and captioning, it will become the norm, and for good reason.

Do they maybe need the threat of a lawsuit for knowingly withholding the information??? Lawsuits seem to perk up their ears.

 

[Selket]

I guess because William has a severe food allergy (to peanuts/tree nuts) and I've gotten such jaw-droppingly wonderful service from Disney for his food allergies (and diabetes), I don't feel right personally making a big issue of this. With a few phone calls I've been able to get William food not usually served in certain places (like a regular hot dog at Biergarten) and basically been able to tell them what I'd like him to eat and they make - no problem. I had the chef at Crystal Palace make him 2 giant platters of food and came out himself (and someone else - took 2 of them to carry it all) - and let William choose what he wanted off the platters. And William is just 4 years old. I've had chefs get the "light lemonade" for him at CSR and they offered to make him box lunches for the parks. The CR fast food manager had a box of Itskadoozies sent over to the FFC just for us because nothing in the ice cream case was safe for him. The POR chefs let me make up his own "kids meal" that was peanut safe and something he'd eat - choosing things not on the regular kids menu.

I don't think William's case is special - the Disney chefs make a HUGE effort in accomodating kids and adults with special dietary needs. I think it would be an excellent addition to what they already do in providing carb info for their fast food and I'd be happy to ask them to do it. But I'd rather go about it with honey than a stick I guess. I never have too much problem WAGing it at Disney. Disney is the ONLY place we can eat out with William at so many different places and not worry at all.

Again I just wonder how their catering department is able to give carb counts for the food provided at the Children With Diabetes conference? And does anyone know why they don't want to provide the nutritional info?

 

[Zurg]

What options do we have to change this? I mean, the food industry fought against package labeling...McDonalds

I think they need to hear from guest that it matters.

I got through to one executive who said he had NEVER heard a request for it.

I don't think the treat of litigation is what is needed I think a lot of guest requests is.

 

[Zurg]

How does the Disney catering come up with the carb info for the breakfasts and lunches served at the Children With Diabetes conference?

This was Disneys reply when I asked about the CWD conferance. I wasn't there so I couldn't reply one way or the other:

They only gave the information that was supplied on the package label
and it only applied to certain items. Some food did not have any
nutritional information, so the Guest had to make their own decision on
what food to eat how much. ​