Question on child with diabetes

[daneenm]

Lots of good advice here already. Just jumping in to second the comments about T1D in a 4 year old vs. older children. DS was diagnosed at 20 months and had numbers all over the map (still at 8 we have some unexplained numbers, but it is not usually as variable in a single day as it was while he was a toddler and in pre-school). He could be 300, and an hour later 50. The best advice, in my opinion...test, test, test. You just never know how his body is reacting to the heat/exercise/excitement/etc.

In 2 months, you may not have it nailed down yet, but you will soon know his likely triggers as well. For DS heat and exercise send him plummeting. We visited WDW in August (not a good time heat/crowd wise for DS, but could not be helped) and were quite worried about the heat. Based on the info from this site and the TGM site, we decided to keep our options open for a GAC - we would get one at the first sign we needed it. For that trip, we had a really good touring plan (Thanks TGM!) and wound up avoiding long hot lines for the most part, so did not wind up getting a GAC. Another plan, may have been different. We did however get a GAC in DL on our first trip after he was diagnosed (6 years ago) - although I understand DL is not allowing these any longer. We wound up not using it, since we were visiting in the spring and it was cool and we had no issues with him dropping.

We test and dose anywhere we are in 'real life' and do the same at Disney. We did this while DS was on shots and this summer when he was on a pump. The frio pack is a great idea if you are traveling in the heat, otherwise, we just carry his insulin vials at room temp. Do not feel you have to go to First Aid each time, unless that is what you or your child wants.

I do carry a medicine cabinet with me when we travel so i can be prepared for anything - really, it takes a whole suitcase, which DH just loves . For DS and his T1D management, this includes our blood ketone meter and strips, 3X the number of test strips we think we will need, 2-3X the amount of insulin we think we will need, lots of extra syringes and lancets, an extra lancing device and a Phenergan suppository (in case of lengthy vomiting due to severe stomach bug). Of course, we always have the standard supplies with us at all times, granola bars, glucotabs, juice (when he was younger as he would not eat glucotabs), glucose gel, glucagon, etc. Fortunately we have never even had to get into the medicine cabinet suitcase, but I felt better that I had it all with me.

Most of all, have a great time. Honestly, I was quite worried on both our first trips to DLR and WDW and they were easier to manage than I ever expected.

--Daneen

 

[AMVmom]

Thnak you all for the great advice. It makes me feel better prepared for our trip now and I just want to thank everyone for your responses. I've always read the boards and finally decided to join and I am so glad that I did. I heard a lot of great advice and caring from everyone. Happy New Year!

 

[mnosky]

I am an adult with type 1. We went to Disney shortly after I was diagnosed when I was 12 years old. Just a few comments:

-I requested room in fridge and got it for free because of medical need (but had to remind them it was for meds and ask it to be taken off my bill).

-I just learned that you can have an extra bag for free on airlines if it carries only medical supplies - has anyone done this - does it work??? This would be great as half my suitcase is diabetes supplies, back-ups, glucose tabs, juice etc.

-Don't forget glucagon kits.

-I have a pump and CGMS and keep my glucoses pretty well controlled. But at Disney they just aren't that great and I accept that. I have had a few bad lows there at night (after all that walking) and now lower my basal insulin, which works great for some days and makes me high some mornings. I used a pedometer one trip and then was able to adjust my overnight basal based on how many steps I walked that day. My last trip was tougher because I was pregnant and didn't want to be very high but the CGMS was a lifesaver.

- I was never able to get carb info from disney - was told it varies too much and isn't listed anywhere so just . For example, I think fruit or ice cream is better for dessert because I can more easily count the carbs - but certainly won't pass up something yummy if I really want it.

 

[SueM in MN]

I am an adult with type 1. We went to Disney shortly after I was diagnosed when I was 12 years old. Just a few comments:

-I requested room in fridge and got it for free because of medical need (but had to remind them it was for meds and ask it to be taken off my bill).

Good news about refrigerators - if you stay at a Moderate, Deluxe or Disney Vacation Club resort, your room will have a refrigerator already in it at no charge.
If you are at Value resort, you will need to request one (and may have to remind them that it is for medical reasons). They may provide a small, dorm size refrigerator or an even smaller one, about the size of a shoe box.

-I just learned that you can have an extra bag for free on airlines if it carries only medical supplies - has anyone done this - does it work??? This would be great as half my suitcase is diabetes supplies, back-ups, glucose tabs, juice etc.

If you have a carry on bag that is medical supplies, it can't count against your carry on allowance. It needs to have ONLY medical supplies. If it has other things as well, it doesn't count as medical baggage. When you get to the gate, let the agent know that you have an additional bag of medical supplies related to your disability.
We don't have diabetes supplies, but do have 2 carry on bags for our DD's supplies (her communication computer, etc).
If you check the bag (which may not be a good idea for medical equipment), then most airlines will not charge for it as a courtesy. I have heard that they are checking up on these bags to make sure they contain only medical devices (it seems some people are sticking a piece or 2 of medical equipment in their bag of general baggage to avoid having to pay a fee for their luggage).

- I was never able to get carb info from disney - was told it varies too much and isn't listed anywhere so just . For example, I think fruit or ice cream is better for dessert because I can more easily count the carbs - but certainly won't pass up something yummy if I really want it.

Other people with diabetes have reported the same difficulties in getting carb counts from Disney.

 

[mechurchlady]

-I just learned that you can have an extra bag for free on airlines if it carries only medical supplies - has anyone done this - does it work??? This would be great as half my suitcase is diabetes supplies, back-ups, glucose tabs, juice etc.

YEP. You can pack a suitcase, bag or box with all your special medical needs and it will be free. There is no limit on how many you can take but be reasonable. You can take onto the plane medical supplies that you do not trust to the airline's baggage handlers like pumps and other electronic equipment as well as other special needs items like ensure, food, drinks. testing equipment, and medical equipment.

Is is for medical special needs?
Are you disabled?
If you say yes to both then it is free.

 

[AMVmom]

The carry on baggage advice is great. I always have a bag for his diabetic supplies. Thanks!

 

[zurgswife]

I sent you a PM..

 

[Belle & Ariel]

Remember to bring your glucagon. We had to use it at Disney because my son was enjoying Disney so much, he did not realize how low he was.
Bring a lot of simple sugars, too. You don't want to stand in line for a Coke every time he goes low. I bring a lot of juice boxes. I like the Capri Sun type because of their shape over the square boxes.

 

[buffettgirl]

Also know where the companion bathrooms are so you can have privacy if you need to take care of his sugars or testing.

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

Just to note - a GAC may not shorten your wait in line, (may even make your wait longer) so it is no guarantee to avoid having to leave a line. I think your best bet would be to use Fastpass where available.

I spent a great day with a young lady (age 5) with type 1 diabetes. Her mom tested her blood sugar levels in lines, and had proper snacks available on her at all times. There was no need to leave and come back, as everything that needed to be done was done in line.

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!!!!!!!!!!!!!

 

[Eeyores Butterfly]

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!!!!!!!!!!!!!

Do you have the link to that database and can you download it onto more than just a palm? I've been trying to find something I can put on my phone (I have an iPhone type phone) so that I don't have to carry a big honking book around.

 

[daneenm]

Do you have the link to that database and can you download it onto more than just a palm? I've been trying to find something I can put on my phone (I have an iPhone type phone) so that I don't have to carry a big honking book around.

I have two apps for my iphone that I find really helpful. They are Restaurant Nutrition and Calorie Tracker from Livestrong.

Restaurant Nutrition has info on many national chains, and they add more frequently. The Livestrong app has a much bigger database with 'homemade,' pre-prepared (like frozen from the grocery store) and restaurant food.

They were both free when I downloaded them.

 

[AMVmom]

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!!!!!!!!!!!!!

This sounds horrible but I think I would feel more comfortable letting him eat the snacks that I would not normally let him eat at home just because I know with all his walking, excitement and rides he'll be lower than expected. Now I don't feel so bad feeding him part of a mickey ice cream or itzakadoodle (his favorite before the dx) since the endocrinologist told us he's too young for the tablets. I figure it tastes better too!

 

[daneenm]

This sounds horrible but I think I would feel more comfortable letting him eat the snacks that I would not normally let him eat at home just because I know with all his walking, excitement and rides he'll be lower than expected. Now I don't feel so bad feeding him part of a mickey ice cream or itzakadoodle (his favorite before the dx) since the endocrinologist told us he's too young for the tablets. I figure it tastes better too!

Nothing horrible about that in my book. He needs to be on vacation too. In our house, while we work very hard to manage Diabetes, we do not let it run our lives. As I think I have said before, on day 1 of diagnosis, our endo recommended ice cream as an excellent night time snack because it would keep him nice and even during the night (that great combo of carbs, fat and protein). Everything in moderation ... less moderation on vacation

I am interested in your comment about glucose tabs. We were given tabs when DS was diagnosed (20 months old). Now, he did not like them, but that is different than 'being too young for them.' Actually, it was only this spring (at age 7) that he started preferring glucose tabs to raisins or juice. Did the endo elaborate on this?

 

[AMVmom]

The endo felt that Max would not take the tablets as willingly as an older child (too young to comply I guess). She recommended juice or milk instead. I've given him peanut butter cups before but I really don't feel like having a mushy melted mess in my backpack at Disney. A previous poster did mention glucagon and I have those; hopefully will never have to use. Our overall plan was to let him run a little higher than usual (about 150-200) to try to avoid the lows; we do that before his 1/2 day at preschool and by the time he gets home about 4 hours later he usually is about 90-100 and then he gets lunch. I opted to do the Counter Service dining plan with the thought that we can easily get food/snacks every couple of hours into him and not worry about dining reservations.

 

[daneenm]

The endo felt that Max would not take the tablets as willingly as an older child (too young to comply I guess). She recommended juice or milk instead.

That makes sense, based on our experience. I'm sure you know by now that juice will act much faster than milk, depending how low he is.

Sounds like you have a great plan for a 4 year old. Of course, it is very much like how we handled DS at 4, so I WOULD like it

 

[buffettgirl]

Nothing horrible about that in my book. He needs to be on vacation too. In our house, while we work very hard to manage Diabetes, we do not let it run our lives. As I think I have said before, on day 1 of diagnosis, our endo recommended ice cream as an excellent night time snack because it would keep him nice and even during the night (that great combo of carbs, fat and protein). Everything in moderation ... less moderation on vacation

I am interested in your comment about glucose tabs. We were given tabs when DS was diagnosed (20 months old). Now, he did not like them, but that is different than 'being too young for them.' Actually, it was only this spring (at age 7) that he started preferring glucose tabs to raisins or juice. Did the endo elaborate on this?

Nothing horrible about it in my book either. Like I said, those mickey bars hit the spot! glucose tabs - my son was dx at 5 and wasn't over joyed with them until he hit about 5 1/2 and then he realized they were tasty (try lots of different brands and flavors). Initially I would break them in half for him but quickly realized that he had no trouble chewing them up whole. He adores them now. CVS brand are our favs. Grape, watermelon and raspberry and tropical fruit. anything but orange.

The endo felt that Max would not take the tablets as willingly as an older child (too young to comply I guess). She recommended juice or milk instead. I've given him peanut butter cups before but I really don't feel like having a mushy melted mess in my backpack at Disney. A previous poster did mention glucagon and I have those; hopefully will never have to use. Our overall plan was to let him run a little higher than usual (about 150-200) to try to avoid the lows; we do that before his 1/2 day at preschool and by the time he gets home about 4 hours later he usually is about 90-100 and then he gets lunch. I opted to do the Counter Service dining plan with the thought that we can easily get food/snacks every couple of hours into him and not worry about dining reservations.

A little higher is a great plan during the day. We did this too and only had a few minimal lows. Nothing major. One thing I wasn't prepared for during our first visit after dx though is that we saw a ton of "fat spikes" at night - from all the restaurant / counter service foods. So this time I'm going to try to take that into consideration with evening meal boluses and/or adjust night time basals accordingly. Last time we were there we were still on shots. This time we're pumping.

 

[My3CasBoys]

What are fat spikes?

Thanks for all of the tips as we are planning a trip later this year. DH has been Type I for 20 years. DS was dx in 2007 at age 3. (He likes the CVS glucose tabs too! And, he will chew a glucose tab in his "sleep.") When you have the option to go on a pump, we highly recommend it. DS has been on the Animas 2020 since July. DH went on the Animas Ping in September. DH dropped his A1C one point in the first six weeks!

 

[Selket]

My younger son was dx'd at 26 months and at that age the glucose tabs (and other small candies) are a HUGE choking hazard. There is some evidence that giving peanut butter to young children is more likely to give them a peanut allergy - and I speak from experience - you do NOT want your type 1 child to have a peanut allergy (as mine does). Sunbutter (made with sunflower seeds) has the about the same protein/fat/nutrition and would be less likely to trigger a food allergy.

Fat spikes are when you have a high fat meal and the blood sugar rises slowly over a long period of time. Sometimes if you give all the insulin at once to cover the carbs of a high fat meal (like pizza and birthday cake for example) - the person will go too low about an hour later - and needs to eat some carbs - but then goes too high maybe 4-8 later (or longer) - from the food and fat being absorbed more slowly. With a pump you can spread out the insulin (bolus) over many hours. I've also noticed that for high fat foods that my son needs more insulin than the for just the carbs he has eaten - something like a krispy Kreme donut will raise his blood sugar for up to 8 hours afterwards. Not every food that causes a fat spike for one person will cause it for another - so you have to learn what does for you or your child.

 

[andrea2639]

Hello! I've been poking around the site and read alot about the first aid stations and the hotels accomodations for insulin storage. My 4 year old son was diagnosed with type 1 diabetes 2 months ago and this is the first time we are going to Disney with him having been diagnosed. We'll be going in March. :

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...

 

[andrea2639]

Pop Century will put a fridge in your room, if you tell them that you have medication to keep chilled. There is no charge.
As far as a bag with insulin for the parks, that all depends on his dosing schedule. You will, however, need a way to carry his meter, strips and lancet device so that you can do a blood sugar check at meal time and/or if he feels low (at age 4, you will have to watch for the signs, as I am sure you know!) At that age, and with the excitement of the day, the visible signs of a low may not be apparent until the low is extreme. Carry juice boxes, airhead candy, etc., for a quick treatment for the low. We carried all of this in a small, drawstring-type backpack.
And, YES, get a GAC. You may not have to use it, but you will have it should you see that it may be helpful. There is nothing worse than standing in a 90 minute wait for "Soarin" and having to get out of line because of a blood sugar crisis. No one will "hold" your spot in line. For the time of year you are going, the lines should not be very long, and the temperatures should not be too extreme, so it is possible that you will not need the GAC. There is no penalty for getting one and then not using it.
I have two diabetic kids so, believe me when I tell you, get the GAC. Some people on this board suggested I get one, while others insisted that diabetes was not an illness that should justify one. Only you can know your situation. Since your son is newly diagnosed, his blood sugar levels will be very unpredictable - even with the best of planning.
There are quite a few parents of diabetic children on these boards! People are very helpful and willing to share info, even not Disney related. I'm sure they will pop in and offer you encouragement.
Enjoy your trip! We love Disney!

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