Type 1 Diabetes Advice for my Daughter

[jakeybake]

Hi,

Last Friday my 11 year old daughter was diagnosed with Type 1 Diabetes. As you can imagine our life has been a whirlwind over the last week. My daughter is doing great but her mom and I are trying to wrap our heads around everything.

We have all the math and injections down pat but I was wondering if anyone else out there has any advice for how to best plan/approach a WDW trip with a Diabetic child.

We spend 8 days each August at the Beach Club and hoping to have a plan in place to help us along this trip, as it will all be completely new to us.

Thanks in advance for any help. I am told that it all gets easier. I'm keeping my fingers crossed that it does.

Jay

[daneenm]

So sorry to hear of your daughter's dx. DS was dx 10 years ago, at 20 months.

You should do a search, as there have been lots of threads on this topic with great advice. Since you are so brand new to T1D, my suggestion is to focus on absorbing the basics (great that you are already doing your counts and ratios!) before you move on to WDW planning, since you still have lots of time before your trip. As you already know, there is a lot to learn about managing T1D and you will apply your basic learnings when you trip plan.

The main thing to know is that with a little extra planning, it is totally doable and, in my opinion, not a whole lot harder than normal life. Our plan is always about extra....extra TESTING (lots of walking and heat can make some people low), extra snacks (always have them with you in line), extra supplies (in case a vial of insulin is bad, an illness arises. etc. you want to be prepared). By the time August comes around, your carb experience and estimating skills will likely be quite good, so estimating what she is eating may not be too troublesome. We find that our educated guess is usually pretty close.

Don't know when in August you are going, but we will be at YC 7/29 - 8/10 with DS12. If you wanted to try to meet up at SAB or something, just let me know. DS is always happy to compare notes with other T1D children.

[jakeybake]

Thanks so much for the advice. We really appreciate it.

I would of loved to pick your brain in person and meet your son and family. Unfortunately we will be there from the 21-28.

Thanks again so much. As you know this is quite the scary time for us!

Jay

[buffettgirl]

Originally Posted by jakeybake

Hi,

Last Friday my 11 year old daughter was diagnosed with Type 1 Diabetes. As you can imagine our life has been a whirlwind over the last week. My daughter is doing great but her mom and I are trying to wrap our heads around everything.

We have all the math and injections down pat but I was wondering if anyone else out there has any advice for how to best plan/approach a WDW trip with a Diabetic child.

We spend 8 days each August at the Beach Club and hoping to have a plan in place to help us along this trip, as it will all be completely new to us.

Thanks in advance for any help. I am told that it all gets easier. I'm keeping my fingers crossed that it does.

Jay

I don't have time to give you a whole answer right n ow but do a quick search of this forum and you'll find plenty of suggestions from others who have been in your shoes.

[nonnahsb]

.

[SueM in MN]

Just a reminder for posters:
We ask posters not to post specific names of stamps, descriptions of stamps or exactly what happened to them at specific attractions..

Some of the reasons are:

WDW can and does change the Guest Assistance Card from time to time. Sometimes it is what it or a specific stamp is called or looks like. Sometimes it is how it works.
And, things you may not be able to see can change how guests are handled.
This can include things like staffing at an attraction, how busy the park and that attraction are, time of day and time of year and how many other guests with special needs are waiting,
How a particular GAC is handled may not even be the same on the same attraction on the same day (even for the same guest).
This is why we ask people not to post the names or descriptions of stamps or exactly what accommodation they were given.

The informations about GACs in post 6 of the disABILITIES FAQs thread is up to date and accurate. It is based on the ADA and is general enough to not give a lot of information that is likely to change. Someone who knows that they need to explain their needs, should be able to get the assistance they need.
You can find the disABILITIES FAQs thread near the top of the disABILITIES Board or follow the link in my signature.

[buffettgirl]

Originally Posted by jakeybake

Thanks so much for the advice. We really appreciate it.

I would of loved to pick your brain in person and meet your son and family. Unfortunately we will be there from the 21-28.

Thanks again so much. As you know this is quite the scary time for us!

Jay

Ok, so I'm back with some more time to help you out.

First, know that come august you're going to be in a completely different place with diabetes than you are today. It's going to be a part of your normal life by then, so try not to stress too much about particulars today. What worries you today is not going to be a concern in August.

Some things that will help:

• Make sure you've got plenty of supplies - I usually say at least double what you think you'll need, but usually I pack triple.
• Pack multiple meters and batteries. Don't forget the batteries.
• Cover yourself for all possible situations -plenty of ketone strips for highs, plenty of glucose for lows.
• Bring extra insulin - and if you're not pumping and need to carry it during the day get a frio case . It will keep your insulin at a safely cool level (not cold, but will avoid overheating).
• Watch out for overly cold room fridges. Frozen insulin does not work.
• know the location of a local pharmacy and how to get your RX from home sent there if you freeze your insulin.
• Carry what you'll need at the park, don't assume you'll be able to get something. Plenty of syringes/insulin/juice / granola bars / glucose tabs and don't forget the glucagon.
• Use long lines as breaks to check bg and bring up lows. If you have to sit and wait, might as well sit and wait (or stand and wait) while in line.
• Plan on testing at least double what you do at home. The heat in August and the added walking can bring down BGs, especially at night. The good thing is that the high fat Disney food / ice cream usually counteract that pretty well.
• Remember that vacation should be just that. Vacation. If you log every number at home, it's a time to just take a little break from it. It's also the time where you can let some things go. Don't stress. Enjoy it.
• use resources like smart phone apps and a calorie king book to figure carbs. Disney won't provide the info, so you're on your own. our first time at disney after dx we took a small travel scale with us. It was worth it to be able to more accurately figure out portions. We can eyeball now, 7 years later, but travel scales are cheap (amazon)

As for GAC; the big thing to ask yourself is what specific needs will my child have in Disney and what would I need Disney to accommodate? That is what a GAC does. It doesn't say "here little one, you've had a spot of misfortune and so we're going to make it up to you."

I know people like to talk about how the heat drops BG and therefore they can't wait in line or in the sun, but you're going in August. It's hot all day. A GAC isn't going to do diddly squat. We are summer visitors too. We plan our park days wisely using the various resources online (touringplans, easywdw, tourguidmike) and know how to use fastpasses to our advantage. Even in July and August we never wait in any line more than 20 minutes. And like I said above, we use the lines as rest spots if we have to do that.

In the end, have a great time. Don't let this diagnosis change your child's life. If disney is what your family always does, don't let your child's diabetes be the reason you stop. Your child WILL, I guarantee you, take that personally.

[SueM in MN]

Originally Posted by buffettgirl

Ok, so I'm back with some more time to help you out.

First, know that come august you're going to be in a completely different place with diabetes than you are today. It's going to be a part of your normal life by then, so try not to stress too much about particulars today. What worries you today is not going to be a concern in August.

Some things that will help:

• Make sure you've got plenty of supplies - I usually say at least double what you think you'll need, but usually I pack triple.
• Pack multiple meters and batteries. Don't forget the batteries.
• Cover yourself for all possible situations -plenty of ketone strips for highs, plenty of glucose for lows.
• Bring extra insulin - and if you're not pumping and need to carry it during the day get a frio case . It will keep your insulin at a safely cool level (not cold, but will avoid overheating).
• Watch out for overly cold room fridges. Frozen insulin does not work.
• know the location of a local pharmacy and how to get your RX from home sent there if you freeze your insulin.
• Carry what you'll need at the park, don't assume you'll be able to get something. Plenty of syringes/insulin/juice / granola bars / glucose tabs and don't forget the glucagon.
• Use long lines as breaks to check bg and bring up lows. If you have to sit and wait, might as well sit and wait (or stand and wait) while in line.
• Plan on testing at least double what you do at home. The heat in August and the added walking can bring down BGs, especially at night. The good thing is that the high fat Disney food / ice cream usually counteract that pretty well.
• Remember that vacation should be just that. Vacation. If you log every number at home, it's a time to just take a little break from it. It's also the time where you can let some things go. Don't stress. Enjoy it.
• use resources like smart phone apps and a calorie king book to figure carbs. Disney won't provide the info, so you're on your own. our first time at disney after dx we took a small travel scale with us. It was worth it to be able to more accurately figure out portions. We can eyeball now, 7 years later, but travel scales are cheap (amazon)

As for GAC; the big thing to ask yourself is what specific needs will my child have in Disney and what would I need Disney to accommodate? That is what a GAC does. It doesn't say "here little one, you've had a spot of misfortune and so we're going to make it up to you."

I know people like to talk about how the heat drops BG and therefore they can't wait in line or in the sun, but you're going in August. It's hot all day. A GAC isn't going to do diddly squat. We are summer visitors too. We plan our park days wisely using the various resources online (touringplans, easywdw, tourguidmike) and know how to use fastpasses to our advantage. Even in July and August we never wait in any line more than 20 minutes. And like I said above, we use the lines as rest spots if we have to do that.

In the end, have a great time. Don't let this diagnosis change your child's life. If disney is what your family always does, don't let your child's diabetes be the reason you stop. Your child WILL, I guarantee you, take that personally.

I have not dealt with insulin, but did have to temporarily transfer a medication order to a pharmacy in Florida when we had an issue.
The one piece I forgot about (or was not warned about) was that when Target transferred the prescription to a Target Pharmacy in Florida, it stayed there until transferred back. So, when it came time for my next auto refill at home, the home pharmacy did not have an order, so did not fill it.
It was not difficult to transfer back - just an additional step, but one I didn't know about.

[jakeybake]

Thanks to all of you for all of your help. As you can imagine things are a whirlwind for us right now. We aren't even at two weeks since her diagnosis.

My wife and I were talking last night and saying how we are on auto-pilot right now and just hope we don't have a breakdown in the future when it all kinds of hits us.

I really can't thank all of you enough. I know a Disney trip is at the very lowest rung of the importance ladder but we are trying to keep everything as normal as possible for my daughter and 14 year old son and taking our usual August trip is a big part of that.

Jay

[buffettgirl]

Originally Posted by jakeybake

Thanks to all of you for all of your help. As you can imagine things are a whirlwind for us right now. We aren't even at two weeks since her diagnosis.

My wife and I were talking last night and saying how we are on auto-pilot right now and just hope we don't have a breakdown in the future when it all kinds of hits us.

I really can't thank all of you enough. I know a Disney trip is at the very lowest rung of the importance ladder but we are trying to keep everything as normal as possible for my daughter and 14 year old son and taking our usual August trip is a big part of that.

Jay

Those of us with kids with type1 know exactly how you feel. And it's totally ok to focus on August. It's a good thing to focus on - something normal in your lives.

Make sure you check out http://forums.childrenwithdiabetes.com/index.php
Loads of great people with so much good advice. Diabetes isn't something that you manage only in the doctor's office. It's managed every minute by you, and the more you know the better you are at doing it.

[ttintagel]

Originally Posted by SueM in MN

The one piece I forgot about (or was not warned about) was that when Target transferred the prescription to a Target Pharmacy in Florida, it stayed there until transferred back. So, when it came time for my next auto refill at home, the home pharmacy did not have an order, so did not fill it.
It was not difficult to transfer back - just an additional step, but one I didn't know about.

That's why I carry an emergency prescription for one vial of Humalog with my important travel papers.

[Belle & Ariel]

Be sure to have simple sugars and glucagon with you at all times. Our son dropped low and had a seizure at Disney when he was 11. We know another boy who did also. I think between the swimming and activity they drop more while they are engrossed in everything around them and do not realize how low they are dropping.
We even have candy or fruit snacks in a pocket on rides in case you are stuck on one. That has happened to us for over an hour and you don't want your sugars to be in a backpack at the ride platform--more a problem at Sea World than Disney.
You will probably need to cut back on insulin or have extra snacks and watch for overnight lows.