Touring WDW with epilepsy, worried about fatigue

[jkjkj98]

This is our first family trip to Disney. My kiddos are DS9, DD7, and DS4. My DD7 has epilepsy that is fairly controlled. She had a new diagnosis of some absent seizures in the last few months but her simple partial seizures have been under control since her last medication increase. My concern is her getting overly tired. We have planned to take breaks, but are trying to figure out if we should take or rent a stroller. We still have our old one from when the kids were little, but it is a little bulky. The 2 little ones only weigh about 38 and 46 pounds. My DD is very active, and does gymnastics, but I don't know if it is realistic to expect her or my 4 year old to walk that much, especially with not wanting my 7 year old to get too worn out. Any thoughts?

 

[jmartinez1895]

Bring the stroller. Your kiddos can take turns hitching a ride, but for your child with epilepsy it will help out very much. My son has it as well and we get a GAC for a stroller as a wheelchair. This allows hims a buffer zone from some of the stress of the people in the lines, you might need this as well. It will also provide as safe place fore your child to seize if needed with out so many people noticing. Also if your child should have any seizure activity while in the park then the stroller will give you a place to put her while postdictil (spelling?).

 

[jmartinez1895]

I forgot to add in that we always set the alarm on our cell phone so that our sons gets his medication at the same time he is used to. We are in a different time zone than Disney, so a few days before our trip I'll make out a chart so that I don't mess up the time. We also try to keep the same schedual as at home so that he doesn't miss to much sleep.

 

[jkjkj98]

Setting your alarm on your cell phone is a great idea. She is used to getting her meds at 7 am and pm. So I know we will get sidetracted otherwise. Thanks so much for the suggestion. I have a feeling my son and daughter will fight over the stroller (she is very competitive) even when neither of them need it, so I guess if we just take one, we will have to set some ground rules! Just don't know what to expect with this being our first trip. I really appreciate the input. It is always nice to find someone who can relate! Oh, what is a GAC?

 

[SueM in MN]

Setting your alarm on your cell phone is a great idea. She is used to getting her meds at 7 am and pm. So I know we will get sidetracted otherwise. Thanks so much for the suggestion. I have a feeling my son and daughter will fight over the stroller (she is very competitive) even when neither of them need it, so I guess if we just take one, we will have to set some ground rules! Just don't know what to expect with this being our first trip. I really appreciate the input. It is always nice to find someone who can relate! Oh, what is a GAC?

I have several alarms set on my iPod and that has really helped to make sure DD takes her medications on schedule. She has 3 doses per day. Without the alarm, it's hard to lose track of time and also is easy to think you gave a dose of of medication you did not.
For daily doses of medication, we do take DD's pills in a one dose pill container. We have 2 different looking containers so that we can bring 2 doses with (good idea in case you drop a pill or something).
Bringing a 2nd dose with is also helpful in case you decide to stay a little later.

Follow the link in my signature to get to the disABILITIES FAQs thread. (It is located near the top of this board).

Post #6 has information about GACs - Guest Assistance Cards. These are cards that help the CMs at attractions to know a little about what needs the person has related to a disability.

Post #2 has information about renting ECVs/wheelchairs (and, in your case) strollers in case you don't have one that your child will fit into comfortably.

Post #3 has some links to other helpful information, including some information about epilepsy.
The 'tiredness' to be concerned about is not usually the 'walking around' tiredness, but lack of sleep. So, watch the amount of sleep and not pairing things like a late night followed by an early morning.

Dehydration can also be a problem, so keep drinking water.

Also, you may want to look into tour planning services like Tour Guide Mike and RideMax. Those services point you toward the quietest part of the quietest park. Knowing where to go when can make a difference between having a long wait and not waiting at all. For example, we were at MK yesterday. Around 1:30pm, there was a line way past Small World to get on that attraction. When we actually rode about 7pm, it was walk right in.

Usually, you will find short lines for most attractions if you can get to the park early, as the park opens. Using Fastpass is also helpful (and free). You can send one member of your party with all your park passes to get Fastpass. The Fastpass will have a time printed on it for you to return to the attraction to ride. When you return, your wait will be very short.

 

[jkjkj98]

Thanks for the link. I have one with epilepsy, one who gets migraines, and one with severe food allergies. So I am feeling a bit overwhelmed. Fortunately most everyone is pretty stable right now! I know Disney is great with working with food allergies, so I am a bit more relaxed about that. It is just trying to get everything to come together in the last month!

 

[jmartinez1895]

I'm sending you PM with some random stuff that we do to help our child when at Disney. I just wanted to make sure you noticed the PM.

 

[kknpj]

My daughter has intractable epilepsy. She has daily seizures - even with her meds. We are definitely taking a stroller. I am also bringing her meds for the entire day with us each morning. I may even bring extra, in case a pill gets dropped, etc. This way, no matter where we are we will have her meds. I am also making sure I know where the first aid stations are in case she needs recovery from her seizure in some air conditioning. We are going in June, and I know it will be hot!

Good Luck, and have a great trip!

 

[jkjkj98]

My daughter has intractable epilepsy. She has daily seizures - even with her meds. We are definitely taking a stroller. I am also bringing her meds for the entire day with us each morning. I may even bring extra, in case a pill gets dropped, etc. This way, no matter where we are we will have her meds. I am also making sure I know where the first aid stations are in case she needs recovery from her seizure in some air conditioning. We are going in June, and I know it will be hot!

Good Luck, and have a great trip!

Us too. Definitely planning on built in fountain jumping, naps and swim time. Thanks for the input! Good luck to you too