Type I diabetes

[DISNEY4XMAS]

Hi all I was wondering if anyone has any tips for us traveling to Disney with a recently diagnosised type I diabetic. My son was diagnosised in Dec/06 This will be our first trip Other than going to Grandma's House in MA.

I did find this link at allears.net http://allears.net/pl/diabetes.htm Which had some great great tips. I called the phone number that they gave and within five minuted of me leaving a voice mail I was email all different types of forms to send to Disney. What great service I was so happy that I cried.

If anyone has tips on flying and anything else you could think of it would be great.
A little Background on us- We have two children with Type I my step-son Nate who is 15 was diagnosised at age3. We never had the day to day dealings with him. Nate is on the pump. NATE IS NOT GOING WITH US, UNFORTUNATLY
Then Zac was diagnosised in Dec it was a big change on how things worked on a daily basis her in this house, no more eating dinner at 800pm. zac is on Lantus and Nova log. Need tips on how to get cartriages labled for plan or is box enough? How about all other supplies That come in packs and mostly the box is the only thing labled? HELP Trip is in 5 months LOL
Thanks In Advanced

 

[jayandstacey]

The ALLEARS.NET link is very good and is up to date. It should give information on how to get the insulin and supplies through airport security - so pay close attention to what it says. By the same token, airport security sees diabetes supplies every hour of every day - so you should be OK there.

Some other tips:

- You didn't mention how old Zac is - but you did say he was diagnosed last Dec. If Zac is old enough, have him pay careful attention to the signs of highs or lows. Maybe even make him write them down. Why? In Disney, your schedule/exercise/food is all very different from at home, and highs/lows can happen at times when they never would at home. Be very in tune with Zac's bloodsugar levels, check them often, and quickly deal with situations if they arise - before they get bad. The concept is simple: If one person in your group is having a bad time, then everyone is!!

- Consider lowering the lantus dosage for the trip - the need for insulin may be lower due to all the activity, and you can always correct "on the fly" with more humolog. It is a little harder to constantly "feed" the insulin when there's too much in his system.

- Looks like you're going in Nov/Dec, so extreme heat shouldn't be too much of a factor. But again, if you start feeling hot or the sun is getting kind of harsh, the same will be true of Zac - and his bloodsugars will be affected.

- I mentioned on another thread to have cake GEL with you - a little tube that you can buy to write on a cake. That way if Zac has a big issue with a low blood sugar, like a seizure and he can't swallow, you can squirt some gel in his mouth. If you can carry an emergency glucogon shot, that's even better, but that is bulky (about the size of a hotdog and bun) and expensive ($100ish) and requires a few steps in a situation where you won't be thinking clearly. The Gel is a no brainer - remove top, squirt into his mouth.

- If he's about 6 or younger, consider a stroller. You might only need it in the last hour of the day - but in that hour you're not going to have the energy either.

- Otherwise, have a great time!

 

[jayandstacey]

Also, consider moving Zac to a pump. With Lantus/Novolog, you are generally "feeding insulin" - eating set amounts at set times to match the insulin he has. You mentioned "no more 8pm dinners"

With the pump you can do 8pm dinners again. I won't spell out all the details as maybe you are going there already, and with Nate you can already see the benefits - besides, many doctors use lantus as a stepping stone to pump use.

So my thought is that if you can get Zac on a pump in time, that will make things even easier in Disney. You don't want to be doing "baseline" things in Disney (like you would the first few weeks of the pump) but otherwise it is a big help.

I can't tell you how nice it was to NOT have to pull out a needle and jam it into my 6 year old daughter while sitting at Cinderella's breakfast in the Castle. It would have broken my heart.

 

[Selket]

Jay gave great advice and the web page you found by Bennett and family is the best. They are Disney experts.

Those first trips with a newly dx'd kid are a bit nerve wracking!

These TSA documents are helpful: http://www.tsa.gov/assets/pdf/special_needs_memo.pdf
http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm

I'm flying down to WDW next week so I'll see how that works out.
I plan to cut out the prescription label if the box is too big to take.

I HIGHLY recommend a good touring plan even if you expect crowds to be light. I use Tour Guide Mike who sponsors the Theme Parks board here (http://www.tourguidemike.com). I've used him since 2004 and been in low and high travel times and it was always worth it.

There is info on Guest Assistance cards here on this board in the FAQ - check that out. With low crowds, low heat and a good touring plan you may not need a GAC but it is a possibility if you find touring difficult with your child.

We do best with some sit-down meals but we often go in hotter/crowded times. We're usually seated very promptly that way. If you are going around Christmas I would definitely make some ADR's and sign up for Tour Guide Mike - that is a wickedly busy time at WDW!

 

[DISNEY4XMAS]

I just wanted to say thanks to you guys.
OOPS forgot to mention Zac is 7 and yes we are going in dec. Dec22 - 31 to be exact LOL.
As for the pump I have talked to Nate (15) about it and his feelings are mixed about it, he has been on the pump for almost 5 years he says he like the freedom of the pump for eating but he hates having to carry it around with him. I also noticed that once nate was on the pump he gained a lot of weight. Of course he was on 45 cb per meal since he was three and it was never changed till he went on the pump. He was like Zac gets to eat all that and he is on shots not fair! But Nate was really overweight for a while he has learned to to cut back and not eat as much.
As for zac we are currently using the Humalog pen and Lantus shot. I haven't had a problem as of yet with him not being able to eat whneever. Usually we try to eat at the same time just so that he has his numbers checked before bed and he is in bed by 8. But as for a few months ago we were eating dinner at 10pm and I just covered all but 15g of the food and he was ok, we had high numbers all weekend but it was a stressful weekend (funeral). For while Zac was in school we tried to have no carb snacks and it worked for a while and then he wanted to be like other kids and we said if you want snack than that is fine you just need to have a shot and he was fine with it.

As for the park I have been thinking about bring the glucose tabs with us and I also have the glucogon pens! We have great insurance no copays on anything! THANK GOD! I was think of bring the sm juice boxes too I think I am just over reacting to my fears, that something horrible will happen! I thnk we will be fine just keep the advice coming to sooth my fears. LOL

 

[dizneefamily5]

We just returned Saturday - our dd (4) was diagnosed Nov. '06. It was not easy - but we had an amazing time! The cooler weather is the only way to go. We had many lows from the heat. Our dd is on the pump which helped a lot with flexibility. PM me with any specific questions - I'd be happy to help. If you want, I could call you as well to talk at length. We did have the GAC so I can tell you how that went as well. Thiis was our first time travelling as well. It was a magical trip - but it was stressful for me - the stress of D doesn't go away on vacation. I'm a worry wart! You'll have a blast - Disney is so wonderful and accomodating!

 

[Bsbllmom]

My son was just diagnosed in February. We go often and haven't had a problem. I mix Crystal Light in bottles then freeze them and carry those with me. I keep glucose tabs with me. DS is just getting to realize when a low is coming on. The first aid station is great. We go in there to do injections and testing. They are very friendly and it is a clean place to do what you need to do.


Dizneefamily5 can you email me. I have some questions about the pump. We don't have our first appointment until July 26th and I want to hear from someone that actually has on before I inquire about it.

Thanks

Cheryl
bsbllmom@ca.rr.com

 

[DISNEY4XMAS]

DS is just getting to realize when a low is coming on.

When your DS is noticing the low how low is he? Zac seems not to notice till he is about 50. This past month we have had incresing number of lows right after lunch he has been taken off th playground in a wheelchair because he couldn't walk then a week later after adjusting the insulin we are sky high!
I do plan on the crystal light packages and last time we went we filled bottles and froze them at night it works well .

 

[Bsbllmom]

My son starts feeling his lows when he is in the mid 60's. Before he could be 39 and not really notice it. We've been battling lows since he was diagnosed and haven't had any highs since he was released from the hospital. His school nurse said that he was, A-Symptomatic (I think that is it). But once he starts staying higher longer then his body will start feeling lows before they are too low. I think I notice his lows before he does thow because he starts looking a little pale. I will have him test and his hands are shakey. Then he ends up being in the mid to low 70's.

 

[SueM in MN]

My son starts feeling his lows when he is in the mid 60's. Before he could be 39 and not really notice it. We've been battling lows since he was diagnosed and haven't had any highs since he was released from the hospital. His school nurse said that he was, A-Symptomatic (I think that is it). But once he starts staying higher longer then his body will start feeling lows before they are too low. I think I notice his lows before he does thow because he starts looking a little pale. I will have him test and his hands are shakey. Then he ends up being in the mid to low 70's.

You are right - asymptomatic - it just means without symptoms (that's all the "a" means).

 

[Selket]

Lows are scary but I think we've had more problems with highs in the parks. I think if you pump you have to watch the insulin in your pump and tubing as it can lose effectiveness. Bringing a back-up bottle of insulin to the parks (keep it in first-aid) and some syringes is a good idea. Also eating food he doesn't usually eat and more of it - and more sweets - it is harder to judge the carb count.

William doesn't recognize his lows very often (more than he used to though). I've caught him in the 30's acting normally. He feels terrible later though.

 

[Bsbllmom]

Well my son is affraid to go out of his carb range. He is afraid that he will end up in the hospital again. It is hard to judge carbs. I try to think about how much a regular portion is compared to what a Disney portion is. I try to keep him a little higher while we are at the park. I don't mind him being in the 150 - 170 range while we are there. It is just getting him to eat to get to that level.

 

[DISNEY4XMAS]

I was just wondering , how many times has everyone kids been hospitalized? because I remeber when DSS was diagnosised that he spent some time in the hospital may two three times in a year and when he was diagnoisised he was there for a week. have things changed I haven't had to have Zac there at all even when he was diagnosised we were only in the ER for 4 hours. The sent us to a pedi Endo in the am and we stayed at the Ronald Mcdonald house for a night and that was it. Am I just counting my time till we are there? What where the reasons that they were amitted if you don't mind me asking? I remeber DSS was really sick(strep throat I believe) Ketones the whole nine yards .

 

[jayandstacey]

I was just wondering , how many times has everyone kids been hospitalized? because I remeber when DSS was diagnosised that he spent some time in the hospital may two three times in a year and when he was diagnoisised he was there for a week. have things changed I haven't had to have Zac there at all even when he was diagnosised we were only in the ER for 4 hours. The sent us to a pedi Endo in the am and we stayed at the Ronald Mcdonald house for a night and that was it. Am I just counting my time till we are there? What where the reasons that they were amitted if you don't mind me asking? I remeber DSS was really sick(strep throat I believe) Ketones the whole nine yards .

I think this is a function of (at least) age, regiment and probably other factors. In the first year, at 1 year old, we were in the hospital 5 times. We started humolog only. Then to Lantus, maybe 1 trip on Lantus over 2 years - now the pump, and we haven't been back in 2 years on the pump.

Technology is better, and as the kid is older s/he can help in many ways big and small. Don't fret it - if hospitals aren't in your rearview mirror, there's no need to worry they will be in front of you either.

 

[Selket]

William was dx'd at 26 months old - over 3 years ago now - and (knock on wood) he hasn't been back to the hospital for the diabetes. He's been pumping since 6 months after diagnosis.

 

[DISNEY4XMAS]

OH OH OH I just thought of another question!!! no i am not sitting at home for hours on this thing worse I am at work LOL it is very slow.... holiday. When you call mousekeeping for a sharps container do they dispose of it?

 

[Bsbllmom]

Christian was diagnosed in February. He was in the hospital for 1 week. We had to do a class and read this big book before he was released. They came in every day for training. Once his numbers were down and we passed the test he came home and hasn't been back since.

 

[ELoop]

I was just wondering , how many times has everyone kids been hospitalized? because I remeber when DSS was diagnosised that he spent some time in the hospital may two three times in a year and when he was diagnoisised he was there for a week. have things changed I haven't had to have Zac there at all even when he was diagnosised we were only in the ER for 4 hours. The sent us to a pedi Endo in the am and we stayed at the Ronald Mcdonald house for a night and that was it. Am I just counting my time till we are there? What where the reasons that they were amitted if you don't mind me asking? I remeber DSS was really sick(strep throat I believe) Ketones the whole nine yards .

My son was hospitalized at diagnosis for 3 days but hasn't needed to be since then. We've had bad sites and high sugars but I've handled them at home and he's been fine (knocking on wood). Last (first) time he was in the hospital was 11/2004.

Elaine

 

[ELoop]

My son likes fruit snacks or Mento's candies for lows. They bring him up and he eats them quickly. He never has liked the glucose tabs (says they are chalky) and just prefers the fruit snacks.

When we go to the parks, we carry an igloo backpack with lunch and snacks inside. I freeze a few Kool-aid Jammers 10 and put them in as our "ice" and when they thaw out the kids drink them.

We don't fly as we live in Central Florida. I always make sure I carry my novopen jr (for bad sites), glucogon, fruit snacks and have a site change kit for those "just in case" times.

Elaine

 

[DISNEY4XMAS]

I JUST WANT TO THANK EVERYONE FOR ALL THE HELP THAT THEY ARE GIVING ME! It is just so nice to know that there are such wonderful(magical) people around. Thanks for helping me have a MAGICAL TRIP. Thanks again! I am going to talk to the DH and Ds about the pump as we go back the the pedi endo at the end of July.
THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU