newly diagnosed type 1 diabetes and trip

[Belle4mygrl]

My dd4 was diagnosed 6 days before we arrived at DW. I was very nervous because I am not used to counting carbs. We had some mediocre chefs but one in particular stood out. I wish I could remember her name. She is the Chef at 1900 PF. She went to the buffet and told me what had flour or what was high in carbs. Also, she brought out dd4 a huge bowl of strawberries for dessert. The chef said, " I don't want her eating those desserts full of sugar." She was so kind and caring and made her way back to the table 2 more times before we left. This lady went way beyond her duty, I think.

The chef at Fulton's said he could weigh french fries but couldn't give me a correct carb count. That was ok because I had a book that had the carb count based on the weight.
The Chef at Chef de France never came out to talk with me. The waiter was the "man in the middle."
I told the server at WCC don't worry about the chef so I am not sure how that would have went.
The server at SciFi and Coral Reef was the go betweener.
The chef at PSB was decent. She premeasured my daughter's eggs and potato casserole and gave me the ingredient list for it. But she couldn't give me an estimation of any carbs on the cold bar. Which that was ok, I had my handy dandy notebook. LOL
The chef at CP acted like we were bothering him but he did manage to get us the carb count on the Mickey waffles (the only thing he was able to do).

I just wanted to share the details of the great chef we had. I do think the majority of the chefs did what they could. I know they can't know everything.

 

[Eeyores Butterfly]

I'm glad you had some good experiences, what a scary time to go!

In my limited experience, the chefs are normally pretty good about accommodating. I showed up one day to Liberty Tree on a Friday during Lent. I had no prior reservation. The chef came out to talk to me about what I could eat and made me salmon. He totally didn't have to do that, but he did.

As a former CM, I do want to apologize for those that were less than stellar, especially the one at CP. Most of us take quite a bit of pride in our roles, and it's sad to hear that others are not the same way.

 

[Talking Hands]

It seems to be Disney's policy not to give carb counts for fear of lawsuits. The need for carb counts has been explained to Disney by several of us to no avail. Please write them about your experience and how scary as a parent of a newly diagnosed disbetic child it is to be unable to follow your doctor's diet plan because of Disney's refusal to provide carb counts.

I know I normally avoid foods at buffets that are a mix of items and stick with very plain food due to this. After 30 years I can guess my carb counts on single item foods.

 

[SueM in MN]

thanks for giving the update.
I'm not sure what Disney's problem is with not giving carb counts. You would think they could give them as an estimate with enough 'wiggle room' to satisfy the lawyers, but the don't seem to see it that way.

 

[Belle4mygrl]

You mean they could have told me but wouldn't because of fear of lawsuits?? It seems like we could be just a little concerned with life.



Yes, it was a scary time to go. She got out of the hospital on Wednesday night. The doctor said to absolutely go and do not change plans because of her disease. He said to get back to normal as quick as we can and not to let her feel like she is different.

 

[Eeyores Butterfly]

Having worked in several restaurants, many do not have nutrition facts. I do Weight Watchers and have asked for nutrition facts countless times, but they only have ingredient lists. It's pretty complicated to get them and have them for all of property. If I can't even get basic fat, fiber, and calorie content, I can see why they wouldn't have carb counts. I think that it's not a question of them refusing to give them, but a question of them not having them at all. The lack of nutrition facts has been a thorn in my side since I worked there.

 

[Janet Hill]

Also, she brought out dd4 a huge bowl of strawberries for dessert. The chef said, " I don't want her eating those desserts full of sugar." She was so kind and caring and made her way back to the table 2 more times before we left. This lady went way beyond her duty, I think.

My husband has been a type I for about 35 years. He has charted all types of foods and what they do to his blood sugar levels and a large bowl of strawberries will raise blood sugar levels just as high and just as fast as a candy bar. Strawberries do have better nutritional value, but if it's a treat you're looking for may as well go for the good stuff.

 

[mechurchlady]

Aunt of mine brought over some diebetic cookies. PTUI, worst tasting stuff and they have about 10% less carbs and about 15% less fat than 3 Oreo cookies. You have to watch out for the diabetic stuff as it can have as much carbs and regulars snacks. The Oreos have fiber listed where as the diabetic cookies had none.

http://www.fitbit.com/foods/Hearty+Oatmeal+Cookie+Diabetic/645
That one at least has lots of fibre.

 

[GRUMPY PIRATE]

It sounds like the OP was able to work out a happy comprimise on her situation. I would think that the various restaurants at WDW (and DLR) would anticipate this, and for the health of the guest, have an estimate ready made for the various dishes.

I know in California they are making some strides:

http://latimesblogs.latimes.com/booster_shots/2008/10/california-rest.html

The governator signed a law stating that restaurants hve to have information available.

it will be interesting to see how them implement it.

 

[Eeyores Butterfly]

My husband has been a type I for about 35 years. He has charted all types of foods and what they do to his blood sugar levels and a large bowl of strawberries will raise blood sugar levels just as high and just as fast as a candy bar. Strawberries do have better nutritional value, but if it's a treat you're looking for may as well go for the good stuff.

I thought about that too. It's not just refined sugars, it's all carbs and fruit can be just as bad as a candy bar. It was a nice gesture, most people just don't understand.

 

[MapleGirl]

Hi Belle,
Just wanted to send you some love while you and your family adjust to your daughter's diabetes. DH was diagnosed with Type 1 back when we were in college. It was an adjustment and still is. But we manage and love going to Disney World together! I'm glad most the CMs treated you and your daughter well.

 

[Bethkf]

Hi Belle,

My son was diagnosed with Diabetes at age 11. We have made many trips to Disney and have always had a good experience. I know it can be scary to travel with a diabetic child. Dont know if your doctor has talked to you about diabetes camp but it is something you should look in to. We live in Texas and my son attended Camp Sweeney from Age 11 to 18. This summer he plans to return as a counselor. Diabetes camp is one of the best things you can do for your child.

 

[daneenm]

Gosh, what a scary time to go! I know we did not feel ready to venture outside of home to eat for many weeks after DS was diagnosed (he was 20 months old and it was 6 years ago).

One seed I'd like to plant for when you are ready to think about it...actually, it was already mentioned too...

Your daughter will need insulin for everything she eats whether it is 'sugary' or not. You might let her have a real treat when the rest of the family is having one. Everyone needs to decide what is right for their family, but we go with the 'everything in moderation' theory for all of us. In fact, the night he was diagnosed, our endo mentioned that 1/2 C of ice cream was a perfect nighttime snack since the carbs are balanced with protein and fat and keep them quite even during the night.

I personally cringe, and have to hold my tongue so I don't give a Type 1 Diabetes 101 lecture every time someone questions whether DS 'should be eating that.' I know people are trying to be helpful and most people know more about Type 2 than Type 1, but it can be very frustrating.

We have been to Disney several times since diagnosis and, now that we can nearly estimate the carbs in anything by sight (buffets are still pretty hard), he has free reign to eat as he pleases, including those YUMMY Mickey ice cream bars

Feel free to PM me if you have any questions as your family adjusts to T1D. I am on a great parent's e-mail list also, if that is something you might be interested in...I have found that these folks have just a wealth of knowledge and they are happy to let you bounce ideas and questions off of them.

All the Best!
Daneen

 

[mechurchlady]

I asked someone to help me get the soda pop off the top shelf and ended up in one of them lectures, lol. The dude though was having low sugars and as I listed symptoms he would say yes. It is hard not to be teaching people about things like carbs, low sugar, diabetes or even other things close to us in life. Sometimes online you preach to the choir and someone happens to walk in and hear you preaching and joins the choir.

My nose is still throbbing because I did not get to buy much needed vitamin C and I slid into the yard barely making it to serve mom dinner. But maybe I helped him and in 10 years he might be diagnosed as being diabetic or maybe in 15 years because he changed his diet.

My online dear friend, Toller, was a pig out then shoot the insulin person. She was about 13 when I met her online and her health was very poor as one internal organ like kidneys was not working right, she was overweight, vision problems, and other health issues. I was the first person to set down and show her how food affects her and they glycemic index. It is a couple years later and she now has much better health and her insulin was cut back. I miss that kid, good kid.

It is a personal choice on whether to be very strict on diet or occassionally splurge. Mom splurged on a small piece of chocolate cake but stays on her diet normally. I would wait on splurging until you are into a set routine where you know how her body reacts to various foods. Mom and Toller developed a set diet and knew how that piece of cake would affect them and how to tweak their dinner so that they can have cake.

 

[daneenm]

It is a personal choice on whether to be very strict on diet or occassionally splurge. Mom splurged on a small piece of chocolate cake but stays on her diet normally. I would wait on splurging until you are into a set routine where you know how her body reacts to various foods. Mom and Toller developed a set diet and knew how that piece of cake would affect them and how to tweak their dinner so that they can have cake.

Totally agree, everything we do is about personal choice and you do what is right for your family. Having said that, a person with Type 1 needs insulin whether they have strawberries or ice cream. There is no option to tweak your dinner so you can have a treat...all carbs must be treated with insulin no matter when they are eaten. So, on occasion the ice cream (or whatever floats you boat) is a reasonable choice if that is what works for you.

 

[Selket]

This brings up one of my worst experiences at WDW with chefs (which are very few and far between) - my younger son has both type 1 and a severe nut allergy (and shellfish too we later discovered). We took him back to WDW for the first time after he was dx'd with all that and was eating at Chef Mickey's for dinner. I had to talk to the chef about the peanut allergy thing and also told him that my son was diabetic. Well....after that the chef gave me a lecture when I asked about desserts for him (basically that he shouldn't be eating them) and he actually refused to get anything safe for him to eat - even sprinkles for the ice cream! In hindsight I should have just karate chopped him right there but I was too new to the whole diabetic/peanut allergy thing and eating out. The rest of the family literally snuck around the restaurant eating dessert (while walking) - then we got him something safe from a gift shop or from our room later (I can't remember which).

We do not do sugar free except drinks - for the most part. This will freak out some chefs at WDW. Eventually you do get used to estimating carb counts and giving insulin for the desserts but as a newly dx'd parent of a type 1 child I can totally understand trying to keep the carbs under control. You did a great job it sounds like!

 

[daneenm]

Well....after that the chef gave me a lecture when I asked about desserts for him (basically that he shouldn't be eating them) and he actually refused to get anything safe for him to eat - even sprinkles for the ice cream! In hindsight I should have just karate chopped him right there

Good grief! It is hard to spin that as 'well meaning' isn't it?!

We don't generally do sugar free either, except for diet soda at parties or on vacation. SF products almost always have nearly the same amount of carbs as their regular counterpart and I am not a fan of artificial ingredients, when I can avoid them.

 

[GRUMPY PIRATE]

This brings up one of my worst experiences at WDW with chefs (which are very few and far between) - REDACTED FOR BREVITY!

I remember reading on several different web sites that when you make dining reservations at WDW or DLR, they can flag your reservation with special food needs, and avoid all that problem!

That way you wouldn't have to do your karate chop, unless its a pork chop!!!

heheheh

 

[Selket]

I remember reading on several different web sites that when you make dining reservations at WDW or DLR, they can flag your reservation with special food needs, and avoid all that problem!

That way you wouldn't have to do your karate chop, unless its a pork chop!!!

heheheh

Oh believe me .... for that trip I called *every* restaurant before we left home and talked to the chefs (which you can't really do these days - a central office at WDW handles most requests). I had actually talked to that chef before we left home. The nut allergy and diabetes were listed on all of our ADR's. I guess I had neglected to discuss dessert specifically and that he would want one, etc.

Having all that noted on your reservation, I have discovered, usually gives you a fine meal but they are VERY spotty on dessert. Sometimes he has just been offered toffuti (which he does not like - he doesn't have a dairy allergy but that is all the chef has that is nut free). Sometimes the chef has made an amazing dessert plate with about a zillion carbs! I find it necessary to try to contact the restaurant in advance to make sure they will have some dessert for him if the meal usually includes dessert (like a buffet or if we do the meal plan). Or I have to bring stuff with me (Divvies, etc. that I get onsite) or arrange with him to get his preferred dessert (like an Itskadoozie) after we eat.

Yet your advice is sound - you definitely should note stuff like this on the ADR.