Sezieures ??

[pampam]

We are scheduled to go to WDW for 21 nights in May. My DD has many health problems. I'm expecting many more as she ages. But this one I didn't expect. Out of the blue, she had a sezieure- unconscious, eyes wide open, shaking, soiling, the whole enchalada. From beginning to end it lasted 5-7 minutes. . We took ambualance to hospital, they ran tests, said she was fine. Now we are waiting for an apointment with her nurologist.

I guess I'm looking for some reassurance here. I'm not sure what to expect. This really came out of the blue. I'm hoping she will never have another sezieure. Should I keep the plans for WDW? She really loves it there, and seems to thrive, when we are there. The air tickets are non refundable, but we will take the loss if necesary. The reservations are AP rate, and can easily be cancelled.

The research I did said a lot of people with Downs Syndrome have sezieures . It's supposedly a result of the brain aging. Is the brain damaged with a sezieure? I understand if she has more she may have to go on medication to control them.

Our life is far from normal, but I'm wondering if this will change the quality of her life much. This happened a week ago, and so far, so good. Any ideas?

 

[joanchris]

Go! I have (totally controlled with meds now) a seizure disorder, and DD10 has seizures still, not completely controlled but pretty well. There should be no reason to stay away from WDW just because of that!
The brain can be damaged by seizures usually only when the seizure is very prolonged (10+min at least). If she were to have more seizures and need meds to control them be very careful what meds she takes, the side effects can be horrible, or they can be minimal, depending on the med and the child.

If your neuro is unwilling to work with you and your daughter to find a med that works and does not negatively affect her then switch neuros! (I have had 4 neuros, DD 3 til we found ones that worked for us!)

If it would make you feel more comfortable, you can talk with your neuro and ask for a script of "emergency seizure meds", something that can be given immediately (rectally, sorry) to stop a prolonged seizure. I never thought we needed it for DD, but I filled the script anyhow, and we had it the one time we needed it, used it after the seizure didn't stop for over 10-12 mins. Your neuro would give you specific instructions on how long you can let it go before intervening.

Good luck, I do hope that the seizure was an isolated incident, but just know that if it wasn't it shouldn't mean you have to change the way you do things, or your trip.

 

[loving mom of two]

Hi PamPam,

My DS age 11 also has various disabilities, one of which is seizures. He has had seizures since he was 5. We are planning our third trip to Disney World this May. My son does pretty well overall. We hasto take many breaks throughout the day because he minds the heat and the lines. The Hall of Presidents is a good place to cool off for a couple of minutes. We would start out early in the morning and then head back to the hotel in afternoon so DS could take a nap and then back out again in the evening. DS seizures are controlled pretty well with medication. Hopefully you will be able to meet with your DD's neurologist before you go. I don't know if you are familar with the GAC card or not, but that might be helpful. We have never had to use the GAC card, but I hear they can come in handy. On our last trip, we had DS in a Disney stroller with his sister. Not sure what we are going to do this year because he is to big for a stroller and tires easily. I was thinking about a wheelchair, but am not sure. I wish you and your family the best and hope you get some answers.

 

[SueM in MN]

My youngest DD has had seizures since she was 8 and she is 20 now. It is fairly common for people with cerebral palsy to have seizures (along with people with Down syndrome). Some people have only one seizure and never have another one. I hope that for your DD, but even if she ends up having more seizures, life goes on (and goes on well). My DD's seizures have never been that well controlled; she still have a few seizures a month, but between seizures, she is mostly happy and doing well.

 

[oneangel]

I will also be visiting WDW in May and the beginning of June. I have a 7 yo son that has alot of health problems. One being that a year ago he started having seizures. He has alot of scarring on his brain from a brain injury at birth. His first seizure lasted at least 45 mins before the hospital could get it to stop. Talk about scary. I too wondered about being in the heat and doing the rides. we do have a appt with his neuro so hopefully he can also reassure us. His seizures are controlled with meds right now, but as they grow , they also outgrow the dosage. We also have the rectal meds for emergencys, havent had to use it though thankfully. How exactly does the GAC card work? He is adhd and seizues, hydrocephalus, heart surgery, we have had it all. Will this help for us. As for the meds to control seizures, they are really right, they side effects can be horrible, there are many meds out there that can help, dont settle for the wrong one. As for us, we are really hyped about going. I think it is extra special for families to go that have children with special needs, I cant wait to see my son forgetting all his problems, and having the time of his life with nothing else to worry about!!!

 

[minnie61650]

I will also be visiting WDW in May and the beginning of June. I have a 7 yo son that has alot of health problems. One being that a year ago he started having seizures. He has alot of scarring on his brain from a brain injury at birth. His first seizure lasted at least 45 mins before the hospital could get it to stop. Talk about scary. I too wondered about being in the heat and doing the rides. we do have a appt with his neuro so hopefully he can also reassure us. His seizures are controlled with meds right now, but as they grow , they also outgrow the dosage. We also have the rectal meds for emergencys, havent had to use it though thankfully. How exactly does the GAC card work? He is adhd and seizues, hydrocephalus, heart surgery, we have had it all. Will this help for us. As for the meds to control seizures, they are really right, they side effects can be horrible, there are many meds out there that can help, dont settle for the wrong one. As for us, we are really hyped about going. I think it is extra special for families to go that have children with special needs, I cant wait to see my son forgetting all his problems, and having the time of his life with nothing else to worry about!!!

Welcom to the Disboards.
Sorry your son is having so many difficulities right now.
Are you going to be using a stroller for you son?
If so you can get a stroller as a "wheelchair" GAC or Sticker. That will allow you to keep him in te stroller until it is thime to board the rides.
I am not sure what other needs can be helped with a GAC but when ask for one at guest services just explain your son's needs and they will help you out.
Also remember each park has a first aid station where you go if ds needs some rest or first aid treatment.
Have fun at Disney!

 

[oneangel]

Thanks, I appreciate this. Yes he will be using a stroller. The strollers there, are they very big? Do they fit through the lines? And will he fit in them? UI looked at getting one to take but cant really find one for him that would fit him right. Thanks for all the help, Tracy By the way, We cant wait to go!!!!!!!!!!!

 

[Samar]

DH had AVM (arterio venous malformation >I think that's the spelling) and had surgery to remove the problem tissue in the brain. He does take Phenobarb to control the seizures which are pretty controlled. Usually he is able to catch them before one starts and sits down.

If your DD is old enough to "catch" them before one comes, then I think you will be o.k. However, different activities can set them off at anytime so just keep an eye out *hugs*

For example, lifting things over a certain weight can send DH into a full-out seizure but sometimes just the lighting alone in a room or a show will make him feel tingly like he's about to have one.

Good luck and I hope you all enjoy your extra long stay in Disney! I'd love to be there for 3 weeks!

 

[pampam]

DH had AVM (arterio venous malformation >I think that's the spelling) and had surgery to remove the problem tissue in the brain. He does take Phenobarb to control the seizures which are pretty controlled. Usually he is able to catch them before one starts and sits down.

If your DD is old enough to "catch" them before one comes, then I think you will be o.k. However, different activities can set them off at anytime so just keep an eye out *hugs*

For example, lifting things over a certain weight can send DH into a full-out seizure but sometimes just the lighting alone in a room or a show will make him feel tingly like he's about to have one.

Good luck and I hope you all enjoy your extra long stay in Disney! I'd love to be there for 3 weeks!

Thank you for all your kind words and suggestions. My dd never complains, and never listens to her body, so I don't think she will notice any triggers, and if she does, I know I will never hear about it.

On the bright side, she hasn't had another seizure. We are waiting to hear from the nurologist for an appointment.

I know some might think 3 weeks in WDW is extreme, but we are careful of our spending. We've gone so many times we now know where to spend, and where to scrimp. Also, WDW is her favourite place. She thrives when she is there, and with 3 weeks we have the luxury of time. We used to go comando, but now we poke along at our leisure. As she ages, she has more health concerns, so we include a lot more R&R.

 

[steffali]

I will also be visiting WDW in May and the beginning of June. I have a 7 yo son that has alot of health problems. One being that a year ago he started having seizures. He has alot of scarring on his brain from a brain injury at birth. His first seizure lasted at least 45 mins before the hospital could get it to stop. Talk about scary. I too wondered about being in the heat and doing the rides. we do have a appt with his neuro so hopefully he can also reassure us. His seizures are controlled with meds right now, but as they grow , they also outgrow the dosage. We also have the rectal meds for emergencys, havent had to use it though thankfully. How exactly does the GAC card work? He is adhd and seizues, hydrocephalus, heart surgery, we have had it all. Will this help for us. As for the meds to control seizures, they are really right, they side effects can be horrible, there are many meds out there that can help, dont settle for the wrong one. As for us, we are really hyped about going. I think it is extra special for families to go that have children with special needs, I cant wait to see my son forgetting all his problems, and having the time of his life with nothing else to worry about!!!

Hi I just wanted to say that my DD 19, was born with hydrocephalus and has Grand Mal Seizures, we have gone to WDW many times and have not had any trouble ( Thank GOD ) We also have the rectal meds for emergency but have not had to use it.
I was wondering what type of shunt your son has & How many revisions?
It is rare that I hear someone has hydrocephalus so I like to speak with anyone that has a family member with it. I guess any support helps
Thanks
Stephanie

 

[Densgirl]

Hi just wanted to chime in that we've been with DS whose main issues are a severe seizure disorder. We've used the rectal meds while there. The only negative was we missed a breakfast we had scheduled the next day but it was fine with all of us. Since Ds has gotten older we have noticed that he tires easier with the heat. He has about 45 grand mals a month so I've used the Diastat everywhere from a plane, to a train to every hotel we've ever stayed in. I hope your situation is like another poster mentioned and she never has another one. But like someone else said, life does go on and I know for us DS lives for his Disney vacations. They are well equipped to handle a seizure in every area from the hotels to the parks. We've never needed them but our friends used the hotel doctor and raved about the great service there too. Go and have a great time.

 

[oneangel]

Hi Stephanie, my son has the VP shunt. He has had it since birth. When he was about 2 years old, he had a shunt revision. That is the only one he has had Thank God. It is scary isnt it? How many have you guys had and what kind of shunt does your son have? Has he had it all his life? I am just worried about my son and the roller coasters and such, the heat, im sure you understand how paranoid a mother can be. I can give you my email address if you would like to keep in touch with me. I know it is not often that you meet someone that also has hydrocephalus. Hope to hear from you , Tracy

 

[Samar]

Thank you for all your kind words and suggestions. My dd never complains, and never listens to her body, so I don't think she will notice any triggers, and if she does, I know I will never hear about it.

On the bright side, she hasn't had another seizure. We are waiting to hear from the nurologist for an appointment.

I know some might think 3 weeks in WDW is extreme, but we are careful of our spending. We've gone so many times we now know where to spend, and where to scrimp. Also, WDW is her favourite place. She thrives when she is there, and with 3 weeks we have the luxury of time. We used to go comando, but now we poke along at our leisure. As she ages, she has more health concerns, so we include a lot more R&R.

I'm glad that she hasn't had another seizure I hope she remains seizure free for quite awhile and that your neuro doc is able to pinpoint the issue so she won't have any more occurances.

3 weeks isn't extreme at all! I think that it's wonderful that you all are staying for a good amount of time so there's no pressure to fit everything in on a weekend (like us... lol) I hope you all have a blast and I hope your DD enjoys every bit of it

 

[3DisneyNUTS]

We have a son with epilepsy also. He is 5 and we have gone to WDW 6 times with him mostly with out control. Since hen is still little it is easy to manage. We are in the process of applying for a special needs stroller for his postlictal period (I hope I spelled that correctly). When he has a "big" seizure he needs to sleep it off sometimes he will sleep for 2 hours. He is way too big to carry so we are trying to get the stroller.

 

[mrsfascinating]

My DD5 has been having seizures for the past 2 years. We have gone through all of the anti-convulsant meds by themselves once and are now trying combinations of them. At this point we believe(knock on wood) that we have found a good combination. I did notice that it is very important to keep a schedule with the meds. I give them the same time every day if I am off by 1/2hr it throws things off and she has a seizure. At this point they don't know what is triggering them they are some how linked to her sleep since she has them when waking in the morning or after her nap.
She has been with us in Disney 3 times with in the past 2 yrs. It takes her awhile to get adjusted to her surroundings due to her other disabilities, but once she gets into the swing of things it's great which is why we usually spend at least 11 days when we go so we can take our time on her schedule.