3.5yr old, Epilepsy, & disneyland @ Christmas

[Mipsy25]

I know, a crazy time time to go! My husbands family has been planning this trip for 2yrs though which is a year before our son was found to have epilepsy. We are going the week before Christmas actually (12/20-12/23). His triggers are exhaustion/fatigue and overstimulation/stress. His neurologist already knows of our plans to go and has approved of it, he says "treat him normally and go and have fun!" and I agree! He also has some severe food allergies.

So any suggestions on how to make this trip as easy as possible and as uneventful (as in no medical issues, lol! It can be eventful in Disney Magic, that is just fine!) as possible?


I have looked into some food allergy things but I don't believe we will be eating at any sit down restaurants and I am unsure of the buffets, you know? My husband said he read something about being able to take food with us for our son? Also what about carrying emergency medications such as epipens and emergency seizure medication? Will that be an issue to carry in to the park (they have his prescription on them and they go everywhere with him as it is now)?

Any advice is greatly appreciated!! Thank you!

 

[I Love Pluto]

It must be so hard for you. Who wants to witness their child in a seizure?

Our family also went through this. It will get easier as time goes on because he may feel a seizure coming on, and may be able to tell you.

Watch him around lights and heights - they sometimes bother, sometimes not. Don't assume that because something bothered him one day - that same trigger will bother him the next. It doesn't really work that way. Fatigue is a large trigger. Fortunately, he is a little guy who can rest when he feels like it.

Above all else - relax around him. If he does seizure, you'll get him through with lots of hugs and kisses.

Have a wonderful trip - try not to worry.

 

[susan4000]

a few thoughts: just let the staff and kitchen know wherever you are eating, if you could call them directly a few days before you dine that would be great. That way they can have choices for him that will be appropriate and delightful, keeping it special for your child. I think you should be able to carry the meds with you, but there is a medical station at each park, so you could store it there if you wanted/needed to.
If your child has a seizure be prepared for a full alert team to assist. My friend's child had a tonic-clonic while in the shady line, and the area was cleared of all people, all others waiting were ushered out, as they assessed her daughter and waited for her to feel better. (no meds needed, a swipe of the magnet for VNS and waiting for seizure to subside)
Have fun and know that Disney staff will go out of your way to help you, just let them know what you need, preferably a few days before you arrive, and they will try to bring the magic to your family. Have fun!

 

[cgncga]

I know, a crazy time time to go! My husbands family has been planning this trip for 2yrs though which is a year before our son was found to have epilepsy. We are going the week before Christmas actually (12/20-12/23). His triggers are exhaustion/fatigue and overstimulation/stress. His neurologist already knows of our plans to go and has approved of it, he says "treat him normally and go and have fun!" and I agree! He also has some severe food allergies.

So any suggestions on how to make this trip as easy as possible and as uneventful (as in no medical issues, lol! It can be eventful in Disney Magic, that is just fine!) as possible?


I have looked into some food allergy things but I don't believe we will be eating at any sit down restaurants and I am unsure of the buffets, you know? My husband said he read something about being able to take food with us for our son? Also what about carrying emergency medications such as epipens and emergency seizure medication? Will that be an issue to carry in to the park (they have his prescription on them and they go everywhere with him as it is now)?

Any advice is greatly appreciated!! Thank you!

I can't help you with the allergy issues, and all my experience is from Walt Disney World, but my almost 8 year old also had epilepsy and her triggers sound just like your son's. The two things that have helped us the most is to go the guest services on our first day and get a GAC allowing her to use her stroller as a wheelchair and to keep her in it 90% of the time. (The one morning that we let her walk the ques (with 5 minute wait times) she had quite a bad seizure at lunchtime. After that, she rode all the time.) The other suggestion is to keep the routine as normal as possible. Even though we were on vacation, we got up at about the same time as we did at home, ate meals at normal times and went to bed at close to the normal time. We've never seen the fireworks or any of the nighttime shows and we probably won't for a few years, but we haven't had to visit an ER, either, so we consider our trips a success.

Catherine, Mom to two girls, one with epilepsy