GAC - Tourette's (+OCD/ADD/Anxiety), Epilepsy, Diabetes (oh, and an infant too!)

[OwlDisneyGirl]

This will be our first trip to Disney World since we've gotten some new diagnoses, and I'm guessing we'll need to get a GAC.

My DS has complex Tourette's (with the addition of OCD, ADD and generalized anxiety). He's on meds 2x's a day for the OCD, ADD and anxiety. The tics change from time to time and range from being very noticeable to being not much. His main verbal tic is a cough (sounds like a minor cough, but recently we've been places and he's gotten dirty looks for his cough - chewing gum helps it so we do that when in movie theaters). The OCD can drive him crazy if he bumps into someone or is bumped into, he has to "even" it out.

My DD was just diagnosed with epilepsy (about 4 weeks ago) and is still in the ramp up phase of the medicine. This one will probably also have to go on medicine for anxiety as this is getting worse, but may just be a side effect of the medicine.

My DH has type 1 diabetes with an insulin pump. We've never gotten a GAC for him before, but the heat messes with his sites (and trust me, we've tried EVERYTHING!). He also has trouble with his blood sugars in the heat and we've had to jump out of line more than once in the past to handle a blood sugar that dropped as we waited outside. He's finally agreeing to get this so we can maybe wait in a cooler spot (or at least let him wait elsewhere and join us when we get to the front of the line).

Oh, and then we will also have an 8 month old with us!

Am I crazy??? Also, DH has medic alert bracelet, but DD doesn't yet. She has never had a tonic-clonic, but just complex partial seizures (more like an absence seizure in appearance). Should we get her one before this trip (neurologist says to just keep her life normal and let her do everything we'd normally do, she never mentioned the medic alert bracelet but I forgot to ask - she's on Trileptal right now).

Hopefully we'll have a letter from our neurologist re: DS and Tourette's, etc.

Should we get a GAC for each of them? In case we split up?

Any suggestions from Tourette's? With epilepsy?

Thanks!

 

[SueM in MN]

Getting tired and need to go to bed, so can’t write much now, but suggest you check the disABILITIES FAQs thread (near the top of this board or follow the link in my signature to get there).

Post #3 of that thread has links to some past threads and helpful information, including some information about epilepsy/seizures and diabetes.

Post #6 of that thread has information about Guest Assistance Cards.

You should also look into touring plans like Tour Guide Mike and Ridemax, which will help you to be in the quietest part of the quietest park. That can be even more helpful than a GAC, particularly for someone with anxiety or problems with being bumped. The less people around, the less chance of getting bumped.

 

[seashoreCM]

RE: Tourettes that sounds like a cough.

The good news is that you can let everyone know he is not contagious.
The bad news is that people abhor any cough whether or not you are contagious.

Tourettes is uncommon enough that others will feel uneasy.
The good news is that a Guest Assistance Card can describe the condition.
The bad news is that the GAC has to be displayed for everyone to see before others will be put at ease.
(I would recommend getting a GAC)

 

[SueM in MN]

GACs are not meant to put other guests at ease and are not specific enough information to say something like , "this guest has Tourettes, ignore the cough."
They are a tool to let CMs know the guest needs some extra assistance that is not readily visible. Most guests do not display the GAC and show them only when they need to have a CM see the card to provide assistance.

 

[OwlDisneyGirl]

Thanks! He actually handles crowds okay, it's more that he may bug others if he needs to "even" things out.
We'll just keep our fingers crossed for some luck on this trip and that all goes well for everyone!

 

[KPeveler]

You will not need a letter from doctors about the conditions, and Disney will neither ask for it nor will they look at it. (privacy issues)

What you need to be able to do is explain your child's needs. What is it that your child needs to be able to access attractions equally with everyone else. For example, I know some seizure medications make it difficult for a person to be in direct sunlight, and so a person may get a GAC which allows them to wait out of direct sun (I think Dumbo is the only queue outside at this point, though).

Disney does not need to know a diagnosis, as needs and manifestations vary so widely. I have a friend with my same condition who must wear orthotics in his shoes - I require a power wheelchair!

Just tell guest services what you need, and they will do their best to help.

generally they try not to issue many GACs to one party, unless the needs are very different. Just talk to them, and they will do what they can to help!

There has been discussion on here before about GACs for diabetes, and most people have agreed that it is just not useful. A few people have suggested speaking to the CM if you have to leave a line suddenly.

 

[cocofifi]

I don't have any advice to offer since I haven't been to Disney in years (am in planning stages for an upcoming WDW trip.) However, I do want to wish you, your son and family a fabulous trip! I hope everything works out well for you.

 

[OwlDisneyGirl]

Thanks everyone!

As I said, we've never used it for diabetes before, but thought we'd check into it, but sounds like we should just go with my son and my daughter's "issues". This really will be an interesting trip!

 

[jmartinez1895]

Sorry to hear about all the problem you and your family have, but it seems like you do a good job at keeping it all together. I just wanted to pop in and give you and FYI. My son is on Trileptal and after about 3 hours at EPCOT he broke out in hives. We called the doctor and he told us that it is a very common side effect of this drug. We use a stroller as a wheelchair so all we had to do was make sure the shade was pulled so he was not in the direct sun. We also had to go back and get our GAC updated for the sun issues. We had never had a problem with this at home, but being outside for so long really brought up a problem. I just wanted to give you a heaqds up so that you can avoid it and if it does happen you will not have to freak out and call the doctor like we did.

 

[OwlDisneyGirl]

Sorry to hear about all the problem you and your family have, but it seems like you do a good job at keeping it all together. I just wanted to pop in and give you and FYI. My son is on Trileptal and after about 3 hours at EPCOT he broke out in hives. We called the doctor and he told us that it is a very common side effect of this drug. We use a stroller as a wheelchair so all we had to do was make sure the shade was pulled so he was not in the direct sun. We also had to go back and get our GAC updated for the sun issues. We had never had a problem with this at home, but being outside for so long really brought up a problem. I just wanted to give you a heaqds up so that you can avoid it and if it does happen you will not have to freak out and call the doctor like we did.

Thank you for that!!! DD's our least sensitive to sun, so hopefully it won't be an issue - but as I've found in the past, things tend to change when on vacation!!

 

[KPeveler]

Thank you for that!!! DD's our least sensitive to sun, so hopefully it won't be an issue - but as I've found in the past, things tend to change when on vacation!!

Medications can change things too - I got suddenly sun sensitive on my seizure med, so you may want to be careful in general with summer here

If you are not sure what, if any, GAC may be helpful to you, you do not have to get one your very first moment in the park. A lot of people try a day (or an hour, depending), and then talk to Guest Relations about any difficulties you faced. This is helpful if you are not quite sure what you are going to need

Remember that there is a first aid station in every park, so there is always a cool quiet place to calm down and cool down if needed (I know that is very helpful for my anxiety/sensory problems sometimes - sometimes I just need to "reset")

I have also been known to use Hall of Presidents for that purpose

Hope the trip goes smoothly

 

[OwlDisneyGirl]

Medications can change things too - I got suddenly sun sensitive on my seizure med, so you may want to be careful in general with summer here

If you are not sure what, if any, GAC may be helpful to you, you do not have to get one your very first moment in the park. A lot of people try a day (or an hour, depending), and then talk to Guest Relations about any difficulties you faced. This is helpful if you are not quite sure what you are going to need

Remember that there is a first aid station in every park, so there is always a cool quiet place to calm down and cool down if needed (I know that is very helpful for my anxiety/sensory problems sometimes - sometimes I just need to "reset")

I have also been known to use Hall of Presidents for that purpose

Hope the trip goes smoothly

Thanks! Luckily we were in Miami/the Keys 2 weeks ago after she'd already started the medicine, so I'm hoping if she would have had a reaction we would have already seen it.

We've survived worse though - ended one Disney vacation with a family member in ICU in Celebration. It was our one trip that was just for a few days, guess we really wanted to stay for a week!

 

[SueM in MN]

The other thing to keep in mind is that most lines are covered or pretty well shaded. Sun in the lines used to be problem for us, but with all WDW has done in the past few years (plus some of the trees growing) sun in the lines is rarely a problem for us. You may find the same.
What we need to most aware of is the sun going from place to place outside of attractions.

And, I agree with KPeveler, you don't need to get the GAC right away if you don't know what your needs are exactly. And when you get one, you can always go back and explain your needs agai if it's not meeting them. That may have something else to offer.

 

[knieriem]

This will be our first trip to Disney World since we've gotten some new diagnoses, and I'm guessing we'll need to get a GAC.

My DS has complex Tourette's (with the addition of OCD, ADD and generalized anxiety). He's on meds 2x's a day for the OCD, ADD and anxiety. The tics change from time to time and range from being very noticeable to being not much. His main verbal tic is a cough (sounds like a minor cough, but recently we've been places and he's gotten dirty looks for his cough - chewing gum helps it so we do that when in movie theaters). The OCD can drive him crazy if he bumps into someone or is bumped into, he has to "even" it out.

My DD was just diagnosed with epilepsy (about 4 weeks ago) and is still in the ramp up phase of the medicine. This one will probably also have to go on medicine for anxiety as this is getting worse, but may just be a side effect of the medicine.

My DH has type 1 diabetes with an insulin pump. We've never gotten a GAC for him before, but the heat messes with his sites (and trust me, we've tried EVERYTHING!). He also has trouble with his blood sugars in the heat and we've had to jump out of line more than once in the past to handle a blood sugar that dropped as we waited outside. He's finally agreeing to get this so we can maybe wait in a cooler spot (or at least let him wait elsewhere and join us when we get to the front of the line).

Oh, and then we will also have an 8 month old with us!

Am I crazy??? Also, DH has medic alert bracelet, but DD doesn't yet. She has never had a tonic-clonic, but just complex partial seizures (more like an absence seizure in appearance). Should we get her one before this trip (neurologist says to just keep her life normal and let her do everything we'd normally do, she never mentioned the medic alert bracelet but I forgot to ask - she's on Trileptal right now).

Hopefully we'll have a letter from our neurologist re: DS and Tourette's, etc.

Should we get a GAC for each of them? In case we split up?

Any suggestions from Tourette's? With epilepsy?

Thanks!

Does your husband lower his basal rate when he's at Disney? I'm on the Animas Ping and it allows me to lower the percentage of basal I get when I'm at Disney. This keeps me from going low while there or after we get home to rest.

 

[ireland_nicole]

DD is on Trilyptal as well, and I would agree with pp's; it definitely has a side effect of making the user much more sun-sensitive. DD always has on 70 sunscreen, and a hat usually; we use stroller as wheelchair for a number of reasons (among them, her pdd-nos) but it really helps her. Also, becoming overheated or dehydrated can lower seizure threshold, so really work on a plan that gets enough air conditioning, rest and fluids- it's extra important to avoid a seizure. We also find that we need to keep on our regular schedule (especially for meds) but just in general, if DD gets overtired, she can have a seizure as well. Ask the Dr. if her seizures are photosensitive as there may be some attractions that wouldn't be suitable. From what our Neuro and EEG tech said; most attractions don't "blink" at a rate that could cause a seizure, but there are some that they might still recommend avoiding (I can't remember exactly the term, because DD's seizures aren't influenced by that, so I admit, I didn't pay as much attention, sorry).

Your trip will probably require more planning, but will definitely be worth it- have a magical time! And don't forget to tell us how it went

 

[OwlDisneyGirl]

Does your husband lower his basal rate when he's at Disney? I'm on the Animas Ping and it allows me to lower the percentage of basal I get when I'm at Disney. This keeps me from going low while there or after we get home to rest.

Sorry, I should really subscribe to my own posts!!

DH has lowered his basal rate in the past, but we've found that heat really impacts him and if we don't keep the basal high enough, he will get pretty sick. This will be our first trip to Disney with a CGMS, so I'm hoping that will help us keep him in a bit more control while there.

Thanks for the info on Trileptal everyone! DD seems to be lucky so far with not having any significant sun sensitivity (been at the pool all week on Trileptal and a sulfa med for a UTI, so far no issues). We will definitely work on the hydration, A/C, rests, and keeping her out of the sun (DS, the infant and I all have to do that anyway!).

Thankfully, she is not photosensitive with her seizures. The neuro said to just go and enjoy the trip. She said if she's ridden it before, then she wouldn't be worried. The last trip she was able to ride pretty much everything, so we should be in good shape.

Now, the baby is having an EEG this week, so keeping my fingers crossed that it turns out normal!!