New Epilepsy Diagnosis

[lovethattink]

My son is 6 years old and was just diagnosed with epilepsy this week. We live close to Disney and the neurologist gave us the ok to spend a few hours in the parks as he can tolerate it. I've read through the FAQs related to epilepsy and have a few additional questions.

The new medication seems to make him a little dizzy and we were told to watch him carefully on steps and not to let him climb things that could be a fall hazzard. Things I never took notice to before, do all Disney steps have a back to them, or are they opened? Tom Sawyer Island was the only thing I could think of that has climbing. We were told to avoid playgrounds for now.

His medication also makes him heat sensitive, so we plan to either go first thing in the mornings or in the evenings once the sun starts going down.

I read the link about flashing lights, he did show seizure activity with strobe lights on EEG, and at home he has had some problem with video games. I am trying to think of which attractions would be ok. He is perfectly happy just getting out of the house and people watching, as he has been homebound since Father's Day.

We are going tonight for just a couple hours, but have annual passes. Do you think we need a GAC if we will only be going to parks for 2 or 3 hours at a shot?

 

[mickey&minniealways]

If it is not to personel what medication is he on. Is he having petite mal or grand mal siezures. Do you have a journal to keep track of his siezure activity. If not I would start one. It is not the end of the world. You are not alone. I had my first grand mal siezure at 11 months of age, I am 49 now. Alot has changed in all that time. Two of my 3 kids also have siezures. They are 15 and 23 now. Buy him a hat to wear and sunglasses. Keep him hydrated. I would get the GAC so you can wait in covered areas. As you walk around the parks make note of the shaded areas and first aid stations. A good time to go on the more popular attractions is durring parade time. The lines are much shorter then as everyone is at the parades. Carrying one of those handheld personel fans with the mister to help keep cool. If he is getting tired take a break. If I can help give a holler.

 

[lovethattink]

He had a tonic clonic seizure on Father's Day, early in the morning while he was asleep. Actually all his seizures have been nocturnal. He was diagnosed with BRE, so he should outgrow it. He has had 3 night seizure free since Father's Day. All the other nights, he has had tonic seizures. He was started on topamax sprinkles. The seizures seem to be getting shorter in duration, so that's a plus! Neuro said to give it a week for the topamax to work.

 

[KPeveler]

A GAC is not given out for a diagnosis, but instead for needs. If you can explain his needs and something that he needs to be able to enjoy the parks like everyone else.

Something that might be helpful for him (if you can convince a 6 yr old boy to do it) is using a "stroller as wheelchair." This will allow you to take the stroller into queues and shows, which will cut down on the amount of time he has to stand. A sun shade will also keep down the heat and sun exposure. This will allow him to save his energy for the rides!

You can also get a GAC which will allow your party to be directed around areas with stairs in queues (not skipping lines, just the parts that would be dangerous for him)

If you use a wheelchair or a stroller as wheelchair, you will wait in almost every normal line, so your trips will not change much.

As an AP holder, you can get a GAC for longer than just the one day, so once you figure out what you need, you can get the GAC and keep it for a while (mine was issued for 3 months).

It sounds like avoiding things with strobes (be careful of photo ops in dark rides) and making sure he keeps cool and rested will help. A stroller as wheelchair may be a good idea until you get the meds settled and he (and you) learn any new limitations or needs.

 

[lovethattink]

We went last night to the MK. We got a GAC, but did not use it at all. The temps were perfect due to the rain, it cooled it down to the high 70's. He did great until the light toy venders started appearing. Looks like night is not our best option for now. We used a stroller for transportation around the park, but parked it at the attraction. The best news of all, was no seizures during his sleep last night!!

 

[mickey&minniealways]

Glat to hear all went well. Many of us have reported majour milestones happening at disney. I think it is all that magic. The parks are beautiful at night with all those lights but it may not be the best choice for you. Hope the rest of your stay goes as well.