newly diagnosed juvenile diabetic

[goofyrn13]

As you can see,I have not asked any questions or anything here since my last trip in March.My 9 y.o. dd was just diagnosed with juvenile diabetes and we are in shock.We have a trip planned in April.I have been to WDW many times so I know the crowds,heat and humidity,but my questions are specifically related to this new diagnosis.I am an RN so I also know all the medical stuff.If anyone can ease my fears please do so.
1.How do you handle the carb counting?Is there a site that has the carbs counted at the restaraunt?
2.How do you keep the insulin cold in the parks?
3.How do you tell a child who loves Mickey bars you can't have that?
4.Can I get a refrig for the room?
5.Is there a place that is private for blood sugar checks and insulin?
6.We always drive is this better over flying?It takes 16 hrs straight.
I am sure I will have so mamy mor questions as it gets closer.
Thanks for any replies,
Dana

 

[DeborahKlein]

While I do not have specific information for you, I can help rest your fears a little (I hope) by saying my cousin has two children with JD and they go to WDW a LOT (from NY so it is also not around the corner).

I know all the parks have medical services and there was a link I saw tonight that described a pack that you soak in water and can keep items cold for many hours. Try searcing. Also depending on your schedule for the day(s) you can certainly keep the majority of the insulin in your room. I think most if not all of the resorts have refrigerators in room or available to rent

I know from being gestationally diabetic that even a mickey bar can be a (very occational) treat - how about sharing it with her? (and keep the rest of the afternoon no carb) and carefully monitor blood sugar numbers for the next two days. Dairy was my killer carb - threw me for days. But my DD5 is perfect with no signs of JD so something worked.

Good luck!

 

[BCV23]

First of all, !

Our son developed Type I when he was six. He also has Down's Syndrome and really can't talk so that has been a little challenge. But he is now 23 and has been going to WDW successfully all these years.

1. Frankly, this is a little tough at WDW. Get a good small carb counting book and take it with you everywhere at WDW.

2. When our son was on R/NPH we carried his insulin in a Medicool pack that has a little ice pack that you freeze ahead of time. He is now on Humalog/Lantus. The Humalog is in a pen that doesn't have to be kept cool. But you could also leave insulin in the Care Centers. We find it much easier to have it with us though.

3. I would talk to your doctor or educator about that. You probably could let her have one occasionally and just give extra insulin to cover it. Sharing is a good idea also if you can keep track of how much she has. Our son really avoids most sweets I think because he just knows he doesn't feel as well when he has them.

4. Yes. The moderate and deluxe resorts have refrigerators in most rooms now. If there isn't one in yours, call housekeeping and they will get you one. I always use to note it on the reservation. The value resorts will provide you one as well. I understand those are small...maybe shoebox size?

5. You could go to the Care Centers. We just do it as unobtrusively as possible wherever we're eating. We were told he should have his food in front of hime before giving him Humalog as it begins acting immediately. So it wouldn't work too well to test at the centers and then walk across the park to a restaurant.

6. I would do whatever works best for your family. We fly as we're so far away. But I will say that we have found his blood glucose levels really go up on drives. The complete inactivity really makes a difference. So just be prepared to either give more insulin than usual or less food. But again, I would not make the drive/fly decision based on her diabetes. Either way will work.

My most important tip is to always have some food with you. We usually carry an apple or banana (really can squish easily but he can eat it in about 30 seconds which suits him in a park) as well as juice and his glucagon kit. Raisins would be easy to carry. Also carry her testing kit and insulin with you too. And actually at her age, she might prefer to carry those things herself as she takes ownership of her condition. It seems a good age to encourage that as she will feel proud of herself.

Good luck.

 

[SueM in MN]

Just wanted to say sorry to hear about your child. No matter how much information you have, it's suddenly different when it's your child because it's personal.

One idea for carb counting - you may want to check out the
DIS W.I.S.H. Board. I know when I looked there before, quite a few people are on Atkins diets (at least they were), so if anyone has figured out carbs of WDW foods, it might be them.

 

[extreme8]

Since I've been on insulin for the last 28 years (since I was 14 - you do the math) I'm afraid I can't call myself a "newly diagnosed" diabetic but maybe some of my experiences can help you out.

1.How do you handle the carb counting?Is there a site that has the carbs counted at the restaraunt?
Haven't seen a carb listing for the parks but a good carb counting book will help. Be a bit conservative with the insulin dosing based on carb content since your DD will probably be more active during your trip than on a normal day/school day.

2.How do you keep the insulin cold in the parks?
I don't. After talking to my pharmacist & endocronologist years ago I found that modern insulin only requires refrigeration for long-term storage. If you plan to use it up within 30 days or so after opening you don't need to keep it cold. If you feel you need it cold the first aid stations can keep it in their refrigerator.
Check with your specialist befor taking my advice though.

3.How do you tell a child who loves Mickey bars you can't have that?
I wouldn't (but maybe that's just me). Check the carbs & administer the correct amount of insulin for it. A carb is a carb, whether it's from a hamburger roll or a Mickey bar.

4.Can I get a refrig for the room?
They should be standard at the mods & deluxes by now, and available at the values for an extra cost.

5.Is there a place that is private for blood sugar checks and insulin?
You can use the first aid stations if you feel like she needs the privacy. It might make sense for her insulin but would probably be a hassle for blood tests. I've gotten to the point that I just sit down just about anywhere and do the blood test, although I could understand a 9 yo being uncomfortable with that.

6.We always drive is this better over flying?It takes 16 hrs straight.
This is the part of your post that really got my attention. The total lack of activity involved in driving for long periods really does a number on my blood sugars - they just skyrocket. Even when DOUBLING my normal insulin my sugar is almost unbearably high. On top of the discomfort involved in that by itself you need to factor in the associated thirst, and of course extra bathroom stops.
During a recent 8 hour trip I was shocked at how terrible I felt and how I was affected by the hours sitting still in the passenger seat. It really wiped me out.

Naturally you need to look at your DD situation and her limitations.You're about 1000x more capable of assessing her condition than any doctor on the planet (when kids have diabetes their parents have it too, if you know what I mean) and I'm sure you can tell how she's feeling just by seeing her moods, attitude & body language change.

I recently started on an insulin pump and it's pretty much changed my world. I don't know if it's an option for you but a 6 year old friend of the family went on one at the same time and things are going great for her too.

All of the above is my opinion only, it works for me and may not be for you.
Your mileage may vary, check with your physician before beginning any exercise routine, batteries not included, *after manufacturers rebate, etcetera etcetera.

 

[Talking Hands]

1.How do you handle the carb counting?Is there a site that has the carbs counted at the restaraunt?
I eyeball it and try to stick to rather plain food not mixed. Also you can request a diabetic meal ahead of time at sitdown restaurants. It would be difficult for Disney to give you carb counts for every food or dish. Boma's food is pretty much all high sugar. A good carb counting book would be good.
2.How do you keep the insulin cold in the parks?
Not necessary except in the heat of summer. Even then I just use a small insulated lunchbox for everything.
3.How do you tell a child who loves Mickey bars you can't have that?
Since he will be walking more maybe he can have it. Email Disney and ask for a carb count on that specific item.
4.Can I get a refrig for the room?
Request it for medical reasons when you reserve the room. You can also request a sharps container.
5.Is there a place that is private for blood sugar checks and insulin?
First Aid or the Baby Care Center will have private areas for that but I normally do it wherever I am at the time. Do not do it in the bathrooms. They are not clean enough.
6.We always drive is this better over flying?It takes 16 hrs straight.
That's a family decision. I drive but I only live 4 hours from Disney so I can't see flying.

I am a type 1 diabetic and have been for almost 30 years. I make plenty of trips to WDW and never have had a problem with food. Had a few crashes, but Disney was get about helping me get something sweet to stop it.

 

[Ambassador]

Carb counting was confusing at first. Our dietician finally developed an easy system relating serving size to grams, and then dosing per fixed number of carb grams. Example: one large apple 15 grams = 1 unit humalog. Such a sysytem needs to be recommended by your care team, closely monitored and adjusted. It becomes easier and almost second nature.

Testing and taking shots can be done so discreetly, we have not felt uncomfortable in any setting at WDW.

 

[jig]

We are planning a trip in January and have a 9 year old son with JD. This will be our first trip and we are trying to get prepared for what's ahead too. A friend told us to make reservations for meals ahead of time and note on the reservation that we would like to speak to the chef when we arrive. She said she traveled with a child with glutient intolerance (sp?) and a chef came to their table at every meal and walked around to with them offering suggestions and telling them ingredients. They will have the carb count I feel sure. This probably won't happen at counter meals, but we have a carb booklet from the grocery store for those meals. I'll try to be intouch once we get home to let you know other obsticles we came across and how we managed. On a side note, have you discovered childrenwithdiabetes.com ? Be sure to go there. Many folks there can tell you about traveling with JD. It's a wonderful resource! Maybe I'll see you there sometime. Good luck and good numbers!

 

[LittleDino]

1.How do you handle the carb counting? Is there a site that has the carbs counted at the restaurant? Start counting now. Read food labels on food packaging, use measuring cups to serve "exact" portions. By doing this you'll be able to "eye" the food at Disney and see if it looks like a normal portion of food or too much and adjust insulin amounts accordingly.

2.How do you keep the insulin cold in the parks? No need to keep it cold. Keep your vial of insulin in the room refrigerator, and just fill up some syringes with insulin in the morning and take them with you. The insulin will be fine no matter how hot it gets. Like others have said, insulin can last 30 days without refrigeration.

3.How do you tell a child who loves Mickey bars you can't have that? After carb counting and learning what foods affect my blood sugar more quickly than others, I've learned that I can still eat anything I want (sugar or not) but in moderation of course. Chances are, in Disney with all the walking, your child will be able to handle a Mickey bar and probably won't go high at all.

4.Can I get a refridge for the room? Yes! In fact, if you're staying at a value resort... just tell them you need a refrigerator for medical reasons and they will give you one free of charge. You can mention it when you make your reservations, or go up to the courtesy counter at check-in and request one.

5.Is there a place that is private for blood sugar checks and insulin? Don't think you have to find a first aid center to check your child's blood sugar. If they're feeling high or low, sit down on a bench or a curb and check it right there. Insulin reactions can come on pretty fast... be sure to carry juice boxes and snack foods with you.

6.We always drive is this better over flying? It takes 16 hrs straight. Driving long distances does affect my blood sugar... sitting for long periods of time with no activity can cause my blood sugar to rise. I prefer flying. But if you do go for the car ride, be prepared to give your child a little more insulin to cover the non-activity periods. The opposite will probably happen in Disney - with the extra activity they might experience more lows... I tend to cut my insulin dosages in half! All that walking in Disney is great exercise.

Other tips: Stay hydrated - carry water bottles with you. (this is for everyone! not just diabetics... all that walking and the heat can wear anyone out quickly.) Carry glucose tabs, juice boxes and other snack foods for insulin reactions. Keep the glucose monitor with you at all times. Carry a few dollars in change with you in case you need to buy a soda or ice cream bar to fix a sugar low.

Finally, don't worry. Enjoy your vacation. Disney is one of the best places to vacation because help is always an ear-shot away. Plus, if you learn carb counting now, you'll be ready by April. And... with you being an RN, you're already ahead of the game. Good luck and have fun.

 

[BCV23]

We are planning a trip in January and have a 9 year old son with JD. This will be our first trip and we are trying to get prepared for what's ahead too. A friend told us to make reservations for meals ahead of time and note on the reservation that we would like to speak to the chef when we arrive. She said she traveled with a child with glutient intolerance (sp?) and a chef came to their table at every meal and walked around to with them offering suggestions and telling them ingredients. They will have the carb count I feel sure. This probably won't happen at counter meals, but we have a carb booklet from the grocery store for those meals. I'll try to be intouch once we get home to let you know other obsticles we came across and how we managed. On a side note, have you discovered childrenwithdiabetes.com ? Be sure to go there. Many folks there can tell you about traveling with JD. It's a wonderful resource! Maybe I'll see you there sometime. Good luck and good numbers!

Just wanted to warn you not to expect a carb count from the chefs at table service restaurants. When our son changed from counting all exchanges and eating 7 times/day at prescribed times to just counting carbs, I tried this. The chefs are wonderful and will offer to make low carb meals, etc. but don't know actual carb counts. And of course, kids with diabetes don't need low carb but just an accurate count. This was a couple of years ago now but if it has changed, I've not heard of it. A carb counting book (I don't like the Atkins one BTW) and learning to eyeball portions which comes naturally with practice are your best friends.

I like the "good luck and good numbers."

One other thing. Someone said they need half the insulin at WDW. I wonder if that person might be adult onset? Our son needs less insulin but much more than 50% of his normal dose. Talk to your doctor about that too. We adjust our son's ratio at WDW. And I would be reluctant to give our son a Mickey Bar as it is so much more slowly digested than many other choices and could make it harder to judge what is going on if you get unusual readings. The same stands that serve Mickey Bars serve Strawberry ice bars. I feel more comfortable with that as a once in a while treat. YMMV.

But as you can tell, we all have had different experiences but positive ones.

 

[Talking Hands]

Careful with the strawberry ice bars. I found that they have nutrasweet

 

[goofyrn13]

Thanks for all the replies.You know when it's your own kid it puts everything in a different light.We were just diagnosed last week,so everything is still spinning.We have an endo appt tomorrow so we'll get even more info to boggle our minds.I have been to the site childrenwithdiabetes and has alot of great info also.Does anyone 504 their kid at school?My dd is an A student so she doesn't need that help.This 504 confuses me but everyone keeps telling me do it now.
jig let us know how the trip goes because my dd will be 9 when we go and that will be helpful since you can compare pre jd to post jd for us.
Thanks again

 

[DVCDawn]

HI!

Sorry to hear about your daughter's diagnosis. It must be overwhelming.

I have two children with food allergies who have had many successful trips to WDW thanks to some advance planning and help from the World. I would absolutely contact WDW directly with your specific food-related questions. I do this before each trip and with some effort I can obtain ingredient lists for the majority of food sold within the parks. You'll need different kind of information, but I imagine they could help you as well.

I suggest you email WDW, explain your situation and ask for advice. You should receive some kind of response within a week. For example, I always say something like "I am traveling to WDW in February with my family. My children have life-threatening allergies to peanuts and nuts. Can you provide me with information regarding ingredients, food prep procedures, etc." I receive a form letter with basic info as a reply as well as the phone number for the executive chefs for each park. I make some calls, and we're on our way.

Hope this helps!

DVCDawn

 

[SplashMom]

My thoughts are with you. I have two children with JD and even though it has been 8 years since the first diagnosis, it is still difficult at times to deal with. Many people just don't understand. My kids are both on insulin pumps now and it is definitely life changing. The flexibility and control they now have is wonderful! It may be something to consider later. Everyone has given great advice for dealing with the issues you mentioned so I won't repeat it. I would, however, give your child the mickey bar! I find that our kids do so much walking that having their blood sugar drop is a concern--not usually high blood sugar. In fact, they both find that they can have more treats than usual and still have stable sugars (makes us all happy ). The biggest tip is to have extra food or juice with you at all times. Even waiting for food to come in a restaurant can be scary if your child needs food now. Also, we have always requested a refrigerator for medical reasons and we have never had to pay--Disney or anywhere else. Also, don't forget to request a sharps container at Guest Services. They provide those for your convenience as well. Once you get over the initial shock, I'm sure you will have a wonderful trip!!

 

[LittleDino]

One other thing. Someone said they need half the insulin at WDW. I wonder if that person might be adult onset?

That was me, and nope... not an adult onset. I'm a Type 1 and just very active when at Disney. All the walking and running does wonders for my blood sugar. But yes, each person is different and has a different sensitivity to insulin, so check and see what the Dr. recommends, and you'll learn to adjust insulin amounts as time goes on.

Something to look into later down the road for your daughter would be an insulin pump. Like another poster said, they give you much more flexibility. I was on the MiniMed 508 pump for 5 years, and I just switched over to the Paradigm pump today! Love it already and I've only been wearing it for 3.5 hours.

I know things are very overwhelming right now, but it does get easier to handle. Good luck!

 

[jig]

I was on the MiniMed 508 pump for 5 years, and I just switched over to the Paradigm pump today! Love it already and I've only been wearing it for 3.5 hours.

You'll love the new Paradigm pump. My son is on the 712 and just upgraded him to the new 715. The Bolus Wizard Calculator makes dosing a breeze. BTW they say they will have the Continuous Glucose Monitor available within the year.

 

[Selket]

I don't read the boards quite as often since we have no immediate trips planned so I just saw your post about your daughter being dx'd with type 1. My son William was dx'd with type 1 when he was 26 months old and he is almost 4 yrs old now.

I know how overwhelming those first few months after diagnosis are - you feel like someone is cramming a medical degree down your throat in 3 days so you're able to go home from the hospital and take care of your child! Everyone here has given excellent advice. I'll add that these books were especially helpful:
Sweet Kids (not sure of the author) and Using Insulin (by John Walsh). You can find both on amazon.com and other places.

The children with diabetes website is the BEST place you can go - be sure and check out the chat there with other parents (especially Ellen - so very helpful - tell her Carol sent you - LOL! if you haven't met her yet . She has a son who is type 1 and also Wendy is very helpful - she is type 1 herself). Everyone is correct you should get a 504 if your daughter is in public school. There is lots of info at that website about it.

I will also throw out there, not knowing what insulin regime your daughter is on - that what helped me most was eventually changing William over to Lantus and humalog (or novolog - both fast actiing insulins). As someone mentioned eating a Mickey bar or a hamburger bun is somewhat all the same - both have carbs and you simply give insulin to cover. There is no reason once you get comfortable giving insulin not to let your daughter eat pretty much like a (healthy) normal 9 year old! The Sweet Kids books has a lot of good tips on that. And eventually William went on the pump and the pump is awesome. I think a pump is the best way to go for flexibility (eating like normal) and control (fewer highs and lows). I suggest you start researching the possibility - reading about it on the internet, asking the doctor and checking with your insurance and discussing it with your daughter. It is something for down the road! Both my husband and I had the reaction, after he started pumping, that it was almost like being back to normal - at least compared to all the shots and ups and downs he had.

Also did you notice that the annual Children With Diabetes conference (Friends for Life) is held in Orlando and sometimes at Coronado Springs Resort right at Disneyworld? It is a wonderful time!

We went to WDW twice this summer with William and had no problems. Feel free to email me with any questions and it DOES get better with time - at least it becomes the "new normal." I still feel incredibly sad sometimes about what William faces but I generally feel that if he takes care of himself he can live a long and healthy life.

All the best

 

[SueM in MN]

I don't read the boards quite as often since we have no immediate trips planned so I just saw your post about your daughter being dx'd with type 1. My son William was dx'd with type 1 when he was 26 months old and he is almost 4 yrs old now.

WOW!
It seems like just yesterday that you were on this board saying your son had just been diagnosed with diabetes.
And here you are, able to give help to someone else in the same situation.

 

[Cubana2004]

I am now 23, was diagnosed when i was 9 like your daughter. I'll echo alot of whats been said....depending on the type of insulin she's on, i wouldn't even worry about refrigeration, especially if she goes through a bottle relatively quickly. (ie. 3 a month). In the past Disney World has had some sugar free treats she could take advantage of though as others have said if she's carb counting, might be just as many carbs if she goes for the mickey bar. My one overwhelming suggestion....SERIUOSLY look into an insulin pump. My doctor urged me to get one and i put him off until i was 18, could never believe i'd been that stupid .

As an elementary schooler my parents set up a 504 for me but only to ensure there wouldnt' be a problem with my having a snack while at school during class time. Was never really an issue though.

Good luck and have a great time at Disney World. Rest assured its not the end of the world, as long as you don't hold your daughter back having diabetes certainly won't

 

[mamajoan]

You'll love the new Paradigm pump. My son is on the 712 and just upgraded him to the new 715. The Bolus Wizard Calculator makes dosing a breeze. BTW they say they will have the Continuous Glucose Monitor available within the year.

A Continuous Glucose Monitor?!!

WAY, WAY... WAY COOL!!!!!