Disney and Epilepsy

[emmyri]

I am looking for tips, please. We are travelling soon to Disney, my youngest 17 months was diagnosed with intractable seizures, 2 weeks after I booked the trip.

She is stable enough to make the trip, fingers/toes crossed. We have permission for her doctors.

I am looking for any tips on making this trip as enjoyable for everyone as possible. It's my soon to be 7 year old daughters birthday present.

Thanks,

Emilie

 

[SueM in MN]

I only have a few minutes to post right now, but wanted to welcome you to the disABILITIES Board and say that I am sorry you have to deal with seizures in your baby.

My youngest has seizures that are only partially. Controlled, but we still have lots of fun at WDW.

The 4 biggest hints I have for you are:
1) avoid dehydration because being dehydrated makes seizures more likely. A baby is probably not going to tell you she needs to drink, so carry water along for her and offer it often ( or if you are nursing, offer more often). A good rule of thumb for someone who can't tell you when they need a drink is to offer whenever you are getting a drink.

2) keep on the regular schedule as much as possible.
It's easy to lose track of time and forget doses of medication . The best way to keep on schedule is to use an alarm. Most cell phones, even if they are not smart phones, have an alarm program of some sort.
Naps and bedtime are also important because lack of sleep can lower the threshold that is needed to cause a seizure.

3) use First Aid. If you need to store refrigerated medication for your baby, they will store it safely for you - you just need to make sure to pick it up before leaving the park. First Aid is also a great place to get out of the heat for a rest or to recuperate from a seizure. They have cots, so with a baby, you may find the Baby Care center fits your needs better. There is a First Aid and Baby Care Center in each park and they are open the same hours asthe park.

4) check out the disABILITIES FAQs thread near the top of this board - or you can follow the link in my signature to get there. Post 3 of that thread has general hints and some specific information in the last portion under 'Conditions and Concerns.' There is a section about epilepsy.
Post 6 is about Guest Assistance Cards and you will want to read that. Especially helpful for you would be using a stroller as a wheelchair. Most people don't realize before they go that strollers are not allowed in most lines or attraction buildings. Getting your stroller marked as a wheelchair will allow you to take it into places where a stroller would not be allowed.

I guess my short deeply got kind of long, but hope it helps you see you can still have a great time.

 

[fitzpa]

Sue's tips are right on. My youngest got his 1st Grand Mal seizure 2 weeks before one of our trips. We also kept a written list of all his meds and his medical card with us at all times.
Hope you have a wonderful time.
God bless.

 

[jmartinez1895]

My son has seizures and we enjoy WDW just fine. Along with the above tips you may want to use your stroller as a wheelchair so that you can keep it with you in lines. This will give you a safe place to put your child should she have a seizure while in line.

 

[Mama Who]

Know going in if your child has triggers. DH has epilepsy and strobe lights don't bother him, but that's not universal. As previously noted, food, water and sleep on a regular schedule are key.

Be prepared to split the party if necessary. If your youngest just can't take it anymore, send one parent back to the resort with him and the other to the parks with DD. Trade off so she gets time with both parents. It's not ideal but it may help keep her from missing out on too much and DS is young enough not to be wounded by it.

 

[karlacorley]

First off Huge hugs Mama, our 3 yr old had his first seizure at 6 months old.. He is now on 3 different seizure meds, he is doing ok right now but it seems when he gets sick or out of his routine they increase. We will be going to WDW in Feb /March. I hope everything goes smoothly for yall!

 

[ilandrazdsw]

Echoing the hydration, breaks, sleep patterns, and meds on schedule. Also the stroller as a w/c just as an option. I have seizures, like pp's DH lights don't set it off, but stress and heat will, so try to knew the triggers. If you need to take things slower or take some breaks that is just fine...you all will still have fun

 

[lilwhiterabbit]

I'm an adult who has seizures and am also echoing the recommendations for "know the triggers" and "stick to a schedule" for your little one's medication, but you're probably already pretty familiar with both of those. Going on vacation tends to really throw me off when it comes to my medication, and that tends to be pretty common for most people, so that would be the thing I'd be the most concerned about. If you can, maybe set your phone with an alarm as a daily reminder? That seems to be what works best for me.

 

[lovethattink]

Welcome, Emilie! My son started with seizures out of the blue last summer. SueMN's tips and advice have been spot on for us!

Do you know what your child's triggers are?

My son is very photosensitive. While Disney doesn't have strobe lights they do have flashing lights on some of the attractions. My son cannot ride the Universe of Energy attraction due to blinking lights towards the end of the ride. He also has had problems with fire works, the night parade at MK, and several of the lighted "toys" they start selling at night time.

Getting over heated is also one of my son's triggers. So we limit the amount of time he is outdoors in high temps. Epcot is the best park for us as there are so many air conditioned buildings. Animal Kingdom is the worst park for him.

Change in sleep patterns is also a big trigger for my son, so we try to keep to the same bedtimes and wake up times.

We go at our son's pace instead of ours. So we usually don't cover much ground in a day at a park. Maybe just a few attractions. Because too much stimulation is also one of his triggers.

Even though he is a bit limited to what he can do, we have a great time at Disney. We just do Disney differently.

 

[dollars2disney]

we always use GAC. DH4 started seizing after his 1st trip to the world in @ the age of 2. Still no idea what causes them or what his triggers are. Currently very stable! Pray your trip goes great!!

 

[hastingsmom]

My son had his first Grand Mal at WDW, 3 years ago. We still go annually...he calls these trips "do-overs". One tip I have for you...is during a seizure, have one parent tell others around you not to call 911 if you don't need emergency services. Seizures are scary to people that don't see them often...and there are a lot of people with cell phones at WDW that think they are being helpful by calling 911. In my opinion, it just adds to the chaos of what is going on and usually not needed....so it is a good idea to tell others around you not to panic.

 

[lovethattink]

My son had his first Grand Mal at WDW, 3 years ago. We still go annually...he calls these trips "do-overs". One tip I have for you...is during a seizure, have one parent tell others around you not to call 911 if you don't need emergency services. Seizures are scary to people that don't see them often...and there are a lot of people with cell phones at WDW that think they are being helpful by calling 911. In my opinion, it just adds to the chaos of what is going on and usually not needed....so it is a good idea to tell others around you not to panic.

We were at the Lego Store last week. One of the workers noticed my son's emergency bracelet and he asked me how often he has seizures. He told me that their store policy is that they must call 911 if someone is having a seizure at their store. He said he would have to get his manager, and his manager would call 911.

I don't know what Disney's policy is.

My son had a seizure at a public swimming pool. Their procedure was to clear the pool and call 911. From there we had the option to allow them to treat or refuse treatment.

 

[SueM in MN]

We were at the Lego Store last week. One of the workers noticed my son's emergency bracelet and he asked me how often he has seizures. He told me that their store policy is that they must call 911 if someone is having a seizure at their store. He said he would have to get his manager, and his manager would call 911.

I don't know what Disney's policy is.

My son had a seizure at a public swimming pool. Their procedure was to clear the pool and call 911. From there we had the option to allow them to treat or refuse treatment.

My DD has had several seizures at WDW. No one ever called 911, but as was pointed out, with so many cell phones, it's possible someone could. We have been asked by CMs if we need assistance and they have offered to call for First Aid or told us we could go to First Aid.

Some places may have policies about calling 911 if a person who is alone has a seizure, if a person falls during a seizure or a seizure lasts more than a certain amount of time. In many years of dealing with seizures, we have not run into any situation where 911 was called just because of a seizure. Someone is always with our DD and they take our word that we don't need 911.

 

[lovethattink]

My DD has had several seizures at WDW. No one ever called 911, but as was pointed out, with so many cell phones, it's possible someone could. We have been asked by CMs if we need assistance and they have offered to call for First Aid or told us we could go to First Aid.

Some places may have policies about calling 911 if a person who is alone has a seizure, if a person falls during a seizure or a seizure lasts more than a certain amount of time. In many years of dealing with seizures, we have not run into any situation where 911 was called just because of a seizure. Someone is always with our DD and they take our word that we don't need 911.

SueM, that was the first time anyone had ever mentioned about having a policy for seizures. The ironic thing was that we went to the lego store the day before he had his seizure while swimming at swim lessons. Several people called 911 there.

Last summer, he had a seizure while on the ferry from the MK to the TTC. We were left to ourselves, and he came out of it quickly. We cooled off in the store at the TTC before proceding to our car. Had we not had a stroller with us, things would have been challenging since he is too heavy to carry. The canopy of the stroller also affording him some privacy.

 

[The_Alice]

I agree with Sue totally. I have Juvenile Myoclonic Epilepsy and the biggest key for an enjoyable vacation at WDW for me is getting enough rest.

Constantly going & getting very little sleep; add to that dehydration, off eating schedules and stress and it's not a pretty picture. But, the most important thing for me is getting enough sleep at night and taking my meds at the same time I would if I were in my regular time zone.

I hope you all have a wonderful vacation!

 

[SueM in MN]

SueM, that was the first time anyone had ever mentioned about having a policy for seizures. The ironic thing was that we went to the lego store the day before he had his seizure while swimming at swim lessons. Several people called 911 there.

Last summer, he had a seizure while on the ferry from the MK to the TTC. We were left to ourselves, and he came out of it quickly. We cooled off in the store at the TTC before proceding to our car. Had we not had a stroller with us, things would have been challenging since he is too heavy to carry. The canopy of the stroller also affording him some privacy.

I have a feeling that if it is their policy, they might change it after the first time they call 911 and the person refuses care. The business might be left with a bill to pay for the call.