Question on child with diabetes

[daneenm]

Fact is that we don't know how he will react and if it's poorly than we should still be able to experience Disney....thoughts? He will be having his 5th birthday at Disney and I just want this vacation to be really special as this diagnosis has been extremely hard for our whole family...

So sorry for your son's recent diagnosis. My son was diagnosed at 20 months, 6 years ago. I could not agree more about the difference between very young children with T1D and older people with it. We find that DS is easier to manage even now, at 8, than he was at 2, 3 and 4 - still not a piece of cake, but at least he can help by telling us how he feels now. To take it a step further, IMO, most 'policies' around Diabetes (including insurance limits on test strips per month, etc) seem to be geared toward T2D presumably because that is what is more prevalent. If only they had different names...but I digress.

Your questions are like you are channeling me before our trip to WDW when DS was 6. He is very effected by heat and exercise and can drop 200-300 points in less than an hour. The advice we got was to ask for a GAC that allowed DS to wait in a cooler location, since our concern was heat related. In the end, we never wound up getting a GAC because we had such a great touring plan (thanks Tour Guide Mike!) that we rarely waited more than 10-15 minutes for anything. We visited in August, so I was very relieved. I know it has been said many times, but it bears repeating... test, test, test...

I'm sure others can tell you specifically what they ask for on their GAC. Had we asked for one, I would have been asking for him to wait in a cooler location with an adult and meet up with the rest of us when we got to the front of the line.

Have a terrific birthday trip!

 

[AMVmom]

My youngest son, age 4, was diagnosed 11/24/08. We are also heading to Disney the end of February, on the 23rd for 7 nights at the Wilderness Lodge. It'll be our first trip dealing with this too. My DH also is type 1 and has been on the Minimed Pump for 2 years. Previous trips before with my DH do show some severe lows from the heat and walking. I worry about the same with my son. As you know in a four year old things happen sometimes for no reason and I'm VERY worried about severe lows while being in line and on rides and attractions. Since it's cold and snowy up here in the Northeast we haven't had much experience on how to lower dosages with exercise and I'm hoping to get some guidance soon on that.

My endocrinologist recommended getting a GAC card because of the unpredicatability of Cameron and the unrecognized lows but it seems from previous posts that Disney denies the GAC for diabetics and hypoglycemia (which in my opinion is VERY ignorant as a 4 yr. old diabetic is VERY different than an adult diabetic). I have yet to really find any direct answers on what exactly the GAC card will do and it's benefits. If we have to get out of line (I understand you can test and treat in line but sometimes coming out of the sun and heat into a cooler place also helps regulate lows and if it's a high then we will need a restroom to test for Ketones) than what will the GAC card do for us then? Without one I'll have to take the time to explain everything to the CM? I do feel like that we should have and qualify for the GAC card as a reassurance to our son and our family. Fact is that we don't know how he will react and if it's poorly than we should still be able to experience Disney....thoughts? He will be having his 5th birthday at Disney and I just want this vacation to be really special as this diagnosis has been extremely hard for our whole family...

We opted not to get the GAC card as I don't feel it will really help in any respect. As you well know four year olds are ACTIVE and my only clue was when we took Max to Sesame Place he dropped down to 30 at one point and was still asking to go on the carousel! I only checked him as I had opted not to give him his lunchtime insulin as usual because I expected that the sugars may be lower than expected and (bad mom that I am) decided to dose him after the fact if needed. As PP had suggested and I thank everyone for their advice, I will be bringing tons of strips to test him often. I also am going to let him eat snacks like ice cream to help increase his sugars a bit.

I did finally decide to get a medical id for him. I got one from www.idonme.com that I can just fill in the info myself and isn't too obvious. I was leary of the metal ones as I could see problems with wearing it and I do not want his name and condition in plain site for everyone to see. He thinks this bracelet is a watch; it's also adjustable so no need to worry about having to buy the right size. (By the way, I have no stock in this company!).

The CMs are VERY attentive. Once about a year ago our duoglider stroller tipped over (we hung too many bags from the handle ) and withing a second 2 CMs were running over to help us! Luckily no kids in there but I don't think a GAC card would make things any different as the help is always there. However I have had friends tell me that it wouldn't hurt to just have it; if you don't have to use it then that is great!

Feel free to e-mail or PM me if you would like anytime!

 

[andrea2639]

Please PM me so I can respond! You need to have 10 or more posts to PM. Why don't you think the GAC pass will help? I'm still not sure so any input is greatly appreciated. I read another thread labeled "GAC and diabetes" and was so angered by it that I was shaking. I get really annoyed with people who pass opinions on things that they have no personal experience about like a 4 year old newly diagnosed diabetic child....seriously I would trade a healthy child and 6 hours in line than a chronically sick child and a "fast pass"....

 

[AMVmom]

Please PM me so I can respond! You need to have 10 or more posts to PM. Why don't you think the GAC pass will help? I'm still not sure so any input is greatly appreciated. I read another thread labeled "GAC and diabetes" and was so angered by it that I was shaking. I get really annoyed with people who pass opinions on things that they have no personal experience about like a 4 year old newly diagnosed diabetic child....seriously I would trade a healthy child and 6 hours in line than a chronically sick child and a "fast pass"....

I PMd you.

 

[SueM in MN]

Please PM me so I can respond! You need to have 10 or more posts to PM. Why don't you think the GAC pass will help? I'm still not sure so any input is greatly appreciated. I read another thread labeled "GAC and diabetes" and was so angered by it that I was shaking. I get really annoyed with people who pass opinions on things that they have no personal experience about like a 4 year old newly diagnosed diabetic child....seriously I would trade a healthy child and 6 hours in line than a chronically sick child and a "fast pass"....

If you have not read the information about GACs in post #6 of the disABILITIES FAQs thread, I would suggest reading that to help you make a decision about whether or not a GAC would be useful in your situation.

One thing people with many kinds of chanllenges have posted they found was that knowing when to be in the parks and/or what area of the park to be in to avoid crowds was much more useful to them than a GAC. The GAC is not meant to be a "Pass" or let people bypass or eliminate waiting in lines (that is printed right on the card). Because of that, you may find that the same is handled differently on the same attraction at a different time on the same day. How it is handled is going to depend on things like how busy it is, what accomodations are available right then, etc. So, it's not always a predictable thing.
If you know what park to be in and when, you can find wait times of 10-15 minutes on many attractions that have hour or longer waits at different times. Many people have posted good experiences using Tour Guide Mike.

 

[buffettgirl]

Hi, I was reading your post about traveling to Disney with your diabetic children and the beneifit of a GAC card. My son was diagnosed on 11/24/08 with type 1 he is 4 yrs old. Although, my husband is type 1 too it seems to be a whole different story with my son. He still has unexplained highs and lows and doesn't recognize symptoms to either one. We haven't had much experience with adjusting exercise to dosing yet but I'm hoping to learn. I'm also worried about the carb counting and having to guestimate my way through the entire 7 days....any suggestions on how you do that? Also, my endo and some moms from a support group we attend recommend the GAC card...but I'm not sure how to approach it with guest services....can you give me some guidance on how to explain why we need the card for my son? I would sincerely appreciate it. We really need this trip to be "magical" as we've had the worst 2 months in our lives.

Thank you and I appreciate all the advice! Andrea

We bring a small travel scale with out when we go out to eat - and will carry it with us at Disney. It makes weighing/measuring food so much easier. Get a Calorie King book as well - many common kid foods you can figure out from looking at that. You'll do fine!

It seems an equal number of people with D get GAC as do not. It's all very individual. When we were there last, we didn't. I never felt like we needed it, BUT, my son was 6 and we were over a year past our DX. So it was a bit easier for us. I don't plan on getting one when we go in July either, but I do know that at the friends for life conference they do have Disney Guest Services people on site during the conference to help people get their GAC. So AFAIK disney generally does not give people with D trouble about getting a GAC - especially a newly dx child.

Good luck with your trip. I hope it's totally magical! Those first few months of D are just nightmarish.

 

[Eeyores Butterfly]

Speaking as a former attractions CM- if your concern is the heat there are several things you can do:

-rent a stroller to minimize walking.
-ask to wait in an alternate area to avoid crowds (if that is a concern) and ask to wait out of the sun.

If your concern is the length of time in line, the GAC cannot help you. The GAC is not designed to bypass the lines. The alternate entrances simply provide a place for you to wait that is not as crowded, does not have stairs or other obstacles that can be difficult for people with disabilities to navigate, and is typically out of the sun. If using an alternate entrance, you should expect to wait at least the same amount of time- sometimes longer. I'll give you an example:

For spring break last year my friend rented a wheelchair. We used the alternate/wheelchair entrance at Safari. Although she was perfectly capable of transferring out and many people in the alternate entrance did not have wheelchairs with them, we all had to wait for the wheelchair accessible vehicle but that is the only loading dock the alternate entrance goes to. The Safari is about a 20 minute loop and on that day they only had one vehicle. The vehicle also sat for several minutes to see if any more guests would need the accessible vehicle- so we waited longer than we would have in the normal line.

Fastpass if your friend. Fastpass early, fastpass often. Scout out the indoor rides, many have lines inside the airconditioning so the heat shouldn't be a problem (Space Mountain, Philharmagic, Soarin', etc. etc.) Keep a meter and tabs/gel/glucagon with you at all times should your child go low.

If you have to leave a line, find a cast member. Believe me, I did this all the time for people. You most likely will not be the first or the last person that CM has had to do this for. Typically I would give that person a re entry pass or modified fast pass of some sort so that instead of waiting in the regular line again they could go in the fastpass line. We deal with this a lot and most should be able to help you no problem. You don't have to go into a ten minute explanation. As you are leaving just say, "We had to take care of a medical problem and leave the line. Is there anyway we can avoid going back through the line?" Every ride with a fastpass entrance or height requirement will have a greeter. Most other rides do as well, believe, we are everywhere! You should be able to find a CM to help you.

Point is, get the GAC if you think you need it, but do not expect it to allow you to bypass lines- it does not. There are other ways to deal with the line issue. It can be scary not knowing what to expect, but you all will be fine. Good luck on your trip and have fun!

 

[Selket]

I'm also worried about the carb counting and having to guestimate my way through the entire 7 days....any suggestions on how you do that? Also, my endo and some moms from a support group we attend recommend the GAC card...but I'm not sure how to approach it with guest services....can you give me some guidance on how to explain why we need the card for my son?

I found that getting a Salter nutritional scale helped me a great deal in learning to eyeball portion sizes. With the scale you can set a bowl on it and pull up something like cooked pasta - and it will give you the carb count for however much of it you put in the bowl. It is preprogrammed for tons of foods like that - we use it all the time for pasta, rice, fruits, and to weigh cereal, milk, etc. This is the one I have: http://www.amazon.com/gp/product/B000JNU95Y

As for the GAC - for a late Feb. trip when the weather is cool and the crowds wouldn't be much I would not think you will need it so much. Of course, as the Zurg's say, YDMV (your diabetes may vary). I highly recommend a good touring plan - like Tour Guide Mike. I have been using his site since before my younger son was dx'd with type 1 (he was 26 months old) - he has been going to WDW with type 1 (and severe food allergies) since he was 3 yrs old. The thing that has really gotten him was the heat, combined with the exercise, excitement and the food. Heat seemed to be the worst of it. We seemed to have difficulties with the insulin in his pump losing effectiveness (he wore his pump on an undershirt on his back so it was especially warm perhaps). If you aren't pumping this may not be an issue.

If you want more info about getting a GAC I am happy to discuss it with you - I will PM you so that might let you use the PM system. You cannot get a GAC because of the diagnosis - it has to be for needs. I realize you don't know what those are at this point!

 

[buffettgirl]

and one more big tip (and I"m sure Carol & the Zurgs will agree) : you should definitely visit the forums at Children with Diabetes to get tons of great info and support for traveling with a child with D.
http://forums.childrenwithdiabetes.com/index.php

 

[Talking Hands]

ICK!!!!! ICK!!! ICK!!! No way. Testing and shots happen wherever we happen to be - the most unsanitary place is the bathroom. Blech.



We've never gotten a GAC for my son with diabetes. And we've had lows happen while in line. But you know, the lines move so slowly that we usually just have him sit on the ground and nosh on his glucose tabs and scoot along as the line is moving. by the time we are ready to ride his bg is back where it should be and we've lost nothing. We also carry all our supplies in a backpack and so everything we have is at hand.

WE also plan on lots of extra snacks. Those mickey bars hit the spot.

for carb counts - you can load the USDA's database onto your palm pilot and you can have good carb counts for most foods - may not be specific disney related but they're pretty good.

For the airplane - we put all of DS's supplies in one backpack and tell the screener what's in it. We've not had any trouble with juice boxes etc. We also pack supplies in all the other suitcases so taht if one suitcase gets lost we still have supplies.

Room fridges - they have been known to FREEZE insulin. There was one episode at a FFL conference were everyone had their insulin frozen. Get a frio and use it.

Most of all - ENJOY!!!!!!!!!!!!!

I have been a type 1 diabetic for 30 year and been going to WDW for the same length time several times a year. I the hotel room I do not refrigerate the insulin vials I am using. The extras I refrigerate but am sure to place them away from the freezer compartment. I have never had them frozen. In the cooler months I just place the insulin in a glasses case with a syringe and stick it in my bag. In summer I use a small cooler with a freeze pack and keep all my meds I will need in that. Toss that in the backpack or attach it with a caribiner clip.

I find that the CM at Disney are wonderful and very helpful if you let them know the situation. They will get you juice or a can of coke in a real pinch. Let them know what you need.

Oh and I never ever use the bathroom for my shots or testing. That is just plain nasty. No way, no how. If the person next to me is bothered they can turn away. Why are the looking anyway. It is none of their business.

 

[andrea2639]

As for the GAC - for a late Feb. trip when the weather is cool and the crowds wouldn't be much I would not think you will need it so much. Of course, as the Zurg's say, YDMV (your diabetes may vary). I highly recommend a good touring plan - like Tour Guide Mike. I have been using his site since before my younger son was dx'd with type 1 (he was 26 months old) - he has been going to WDW with type 1 (and severe food allergies) since he was 3 yrs old. The thing that has really gotten him was the heat, combined with the exercise, excitement and the food. Heat seemed to be the worst of it. We seemed to have difficulties with the insulin in his pump losing effectiveness (he wore his pump on an undershirt on his back so it was especially warm perhaps). If you aren't pumping this may not be an issue.

If you want more info about getting a GAC I am happy to discuss it with you - I will PM you so that might let you use the PM system. You cannot get a GAC because of the diagnosis - it has to be for needs. I realize you don't know what those are at this point!

Selket, I am unable to respond but I would like to learn more. My email is apt2639 at gmail dot com I would love to talk.

Thanks everyone!