We're home! Great experience with guest services and GAC but alot of seizures :(

[3DisneyNUTS]

Well unfortunately we are home When we arrived Sunday morning I went straight to guest services at Epcot to explain our situation with Chris. Just for those who don't know Chris has epilespy and we are having a hard time controlling his seizures right now

So I explained my concerns about him having one online and having to leave to come back to the line later. I was concerned this would be cyclical and that Chris would have a seizure while on line and we would leave let him sleep it off then come back to only have it happen again. Well I started to tell the CM about our problem how he has uncontrolled seizures right now and what happens and she stopped me in the middle of it. She was so experienced in dealing with special needs issues that she didn't want me to explain it in detail. She could see I was getting a little emotional (it is hard to tell the story of your sick kid no matter how many times you say it especially to a new person).
She gave me a sincere condolence for all he is going through. I almost started bawling right there because she was so nice and knowledgeable. She explained to me that we would get an alternate enterance stamp and a stroller as wheelchair stamp. That way we could use what we needed. She told me that because of everything we are dealing with just go straight to the CM at each ride and they will guide us on what to do. They usually give the card for six but because we had 7 in our party they made an exception.
At first it was depressing showing the card. For those who abuse this system shame on you. It is a constant reminder that our son has issues and I would have given anything not to have to have this thing. It is just one more thing that lables Chris as special needs. My husband was having a rough time of it too. Weird I know that something that is intended to help brings up such unexpected feelings.
Anyway the card was a blessing and I hope it wasn't a jinx because that Sunday we received it Chris had 4 seizures. If it weren't for the GAC he would have done nothing that day
Throughout the week he had an average of 2-3 a day, much more than at home which is 1-2 a day. The great thing about the pass is that while he was sleeping off a big one we would be able to go into a show (he would have no interest in) and watch that while waiting for him to awake. Thankfully we have a stroller that practically turns into a bed so he was completely comfortable and when he awoke he was happy to be in the same place still with his cousins. So it prevented him from getting depressed about missing out. Like sometimes at home I will put him to bed and his friends will leave or he will sleep through the time they have to pick up a sibling etc and he will be d3evastated that they are gone. This makes him depressed since he knows the seizure was what ruined his day. The GAC prevented this. Chris missed out on something rarely since the GAC made the park accessible to his needs!

We had so many magical moments this trip that I have to tell you in another post. Our vacation would have been so stressful without this option. Thanks guys for helping me decide what to do Without this board I would have learned nothing about the gac and never knew it exisisted.

 

[SueM in MN]

Glad you had a good time and things worked out for you.
One hint DD's neurologist told us is to make sure she is well hydrated. Being on a plane tends to dehydrate you and being outside in the parks tends to also. Being dehydrated doesn't cause seizures, but can decrease the seizure threshold (how easily a seizure is triggered).

 

[3DisneyNUTS]

Glad you had a good time and things worked out for you.
One hint DD's neurologist told us is to make sure she is well hydrated. Being on a plane tends to dehydrate you and being outside in the parks tends to also. Being dehydrated doesn't cause seizures, but can decrease the seizure threshold (how easily a seizure is triggered).

Yeah he was so screwed up with sleep and all. I tried to keeep him drinking but it was so hard because I couldn't force him. Thanks for the tip though next time I will watch how much he is drinking. It was pretty unnerving being he was having so many. We planned the trip in Dec thinking they would have been controlled by now

 

[Nik's Mom]

I feel for you! And I totally understand what you are saying. My son has an autistic disorder, and I always get choked up talking about it, or even watching something on the news about autism will set me off. I'm sorry that your son had a tough time. Thank God for the wonderful CM's at WDW!!!!

 

[dislvr75]

My son has had a few seizures at home, but surprisingly has had two seizures, both at Disneyland in CA and both on hot days. He is on phenobarbital, he only has them once in a great while now, but when he was younger we just thought he was too stimulated and that's what caused the seizures while at the parks. They used to be just febrile seizures when he was little, then he starting having them without fever AND while on medication. We've been trying to figure this whole seizure thing out, keeping the meds at a theraputic level, deciding when and if to wean him.... I thought it probably had something to do with the heat but he's been to WDW and Arizona in May for goodness sakes and never had a problem. Sorry to say our neurologist never said anything about him staying hydrated, THANKS for the tip! Even though we've been seizure free for about two years now, you can bet this May my son will be drinking at every possible opportunity!!!! I don't care how many diapers we go through (he's 6 and has Spina Bifida) I will certainly keep this in mind. THANK YOU SO MUCH!

 

[mommie2angels]

I am so very glad that ya'll had a good time! Sorry about the increased seizures!!! Can't wait to hear more about your trip.

 

[j-me]

Glad to hear you had a great time and that you were able to get on the rides. That is what WDW does for us families that already have a rough life.
But I am also writing you about the seizures. Have you tired or heard about the ketogenic diet? Our son have a progress gray/white brain matter loss and was having around 75 seizures+ a day. We started the diet Thanksgiving weekend...we are down to less then 1 a day!!!!! It was worth the try and it paid off. Our son is tube fed so it is a bit easier for us but we do know other people who eat the diet. ...sure it isn't the easiest or fun-est diet but after 3 years some people are seizure FREE without meds!!!
Just thought I would throw some info your way.
We are going with a MAW trip soon and I too was concerned about the seizures in the park/lines. But it sounds totally do-able after reading your message...thank you

 

[SueM in MN]

If you do a search on this board, you will find some threads about how people managed ketogenic diets at WDW. I think they are about 6 to a year back.

 

[3DisneyNUTS]

Glad to hear you had a great time and that you were able to get on the rides. That is what WDW does for us families that already have a rough life.
But I am also writing you about the seizures. Have you tired or heard about the ketogenic diet? Our son have a progress gray/white brain matter loss and was having around 75 seizures+ a day. We started the diet Thanksgiving weekend...we are down to less then 1 a day!!!!! It was worth the try and it paid off. Our son is tube fed so it is a bit easier for us but we do know other people who eat the diet. ...sure it isn't the easiest or fun-est diet but after 3 years some people are seizure FREE without meds!!!
Just thought I would throw some info your way.
We are going with a MAW trip soon and I too was concerned about the seizures in the park/lines. But it sounds totally do-able after reading your message...thank you

Thanks j-me. We asked a specialist about it for Chris and he said the Keto would not work on his type of seizures. I have not closed the door on this though. Once we exhaust this med we have added (topomax) then I will discuss it with his primary neuro. Oddly enough Chris has not had any seizures since we have been home. It may have been overload for him down there I have no idea. We upped his meds while down there Monday and maybe his level is now ok and doing the job. We came home Friday and Saturday Sunday or today he has not had any. He has also been sick since Saturday morning eating very little....Which would actually support the reason to try the Keto diet. But hopefully this is the med level hitting it's target and maybe he will go another year seizure free but I am counting my chickens before they are hatched right now. I will give you guys an update as the week goes on.

 

[j-me]

Yeah, finding the right level is tricky!! and NO FUN!! I am not a patient person like my husband and drug trial bug me!!

Hey, did they have the turkey legs when you were there? I had heard they
did away with them. I wanted my 12 year old to experience that...like I did when I was younger.. I hope they have them.

Good luck with the meds.
jamie

 

[3DisneyNUTS]

Yeah, finding the right level is tricky!! and NO FUN!! I am not a patient person like my husband and drug trial bug me!!

Hey, did they have the turkey legs when you were there? I had heard they
did away with them. I wanted my 12 year old to experience that...like I did when I was younger.. I hope they have them.

Good luck with the meds.
jamie

NONONO!!!! That rumor is UNTRUE!!!
I had 2 turkey legs while I was down there. I broke my rule of one!! Actually I had one alone one day (yeah I ate it all LOL) and then split one a different day with DH! They are so YUMMMMMMMMYYYYYY!​

 

[Cheshire Figment]

Hey, did they have the turkey legs when you were there? I had heard they did away with them. I wanted my 12 year old to experience that...like I did when I was younger.. I hope they have them.
jamie

Yes, they still have what are called turkey legs. Many people think due to the size that they are rally Emu legs.

Seriously, I have a friend who works at reservations and was told that the turkey legs are considered a snack for people with the dining package.

 

[3DisneyNUTS]

Yes, they still have what are called turkey legs. Many people think due to the size that they are rally Emu legs.

Seriously, I have a friend who works at reservations and was told that the turkey legs are considered a snack for people with the dining package.

Maybe that is why they taste like ham?

 

[mommie2angels]

3DisneyNUTS, I am sure the docs have mentioned this but please watch out for your son's appetite to possibly be suppressed by the Topomax. Our daughter actually quit eating completely for two weeks after she started Topomax. She lost 5 lbs and really didn't weigh enough to be able to lose those pounds. After going through chemotherapy she never has been able to gain weight real well so the Topomax knocked her down for a couple of weeks. Once she got used to the med she started eating again.

As a side note the only time our daughter has been seizure free was for a year after she started chemotherapy. Not a way I would recommend to stop seizures but something in the chemo must have stopped them.

 

[3DisneyNUTS]

3DisneyNUTS, I am sure the docs have mentioned this but please watch out for your son's appetite to possibly be suppressed by the Topomax. Our daughter actually quit eating completely for two weeks after she started Topomax. She lost 5 lbs and really didn't weigh enough to be able to lose those pounds. After going through chemotherapy she never has been able to gain weight real well so the Topomax knocked her down for a couple of weeks. Once she got used to the med she started eating again.

As a side note the only time our daughter has been seizure free was for a year after she started chemotherapy. Not a way I would recommend to stop seizures but something in the chemo must have stopped them.

Thanks for the heads up. I notice he is not hungry in the mornings but makes up for it at night. But this week he has been eating nothing. H has a cold now so I am not sure how much is that. Thanks for the tip though I will watch out for it.

How is your daughter now?

 

[mommie2angels]

For awhile the Topomax did wonders. She would only have a few seizures each week. Now she is having 2-8 seizures a day. The days when she has only 2 they are really bad ones. If she has more than that they are not quite as bad. We are adding Keppra to her Topomax and Lamictal. Since Keppra and Topomax are both appetite suppressants we had to stop increasing her Keppra until we get her completely off the Topomax. We are decreasing by 1/4 of a pill every week. We tried 1/2 a pill every week but her body couldn't take it. Slowing down the decrease has helped.

It's weird because we can never predict the times of her seizures. When we go to Disney she will sometimes do much better there than at home. Other days there it's really awful.

 

[3DisneyNUTS]

For awhile the Topomax did wonders. She would only have a few seizures each week. Now she is having 2-8 seizures a day. The days when she has only 2 they are really bad ones. If she has more than that they are not quite as bad. We are adding Keppra to her Topomax and Lamictal. Since Keppra and Topomax are both appetite suppressants we had to stop increasing her Keppra until we get her completely off the Topomax. We are decreasing by 1/4 of a pill every week. We tried 1/2 a pill every week but her body couldn't take it. Slowing down the decrease has helped.

It's weird because we can never predict the times of her seizures. When we go to Disney she will sometimes do much better there than at home. Other days there it's really awful.

Yeah same with Chris. They are sometimes predictable and sometimes not which blows. He told me he had one today but he wasn't acting like he just had a siezure so I think it was the meds making him feel loopy. He has been really emotional since he does not feel well But even if he had one that would be 1 in 3 days that is the longest we have gone in about 2 months .

 

[torianne31]

Thanks for the heads up. I notice he is not hungry in the mornings but makes up for it at night. But this week he has been eating nothing. H has a cold now so I am not sure how much is that. Thanks for the tip though I will watch out for it.

How is your daughter now?

Hi, I was looking through the boards on hints for a successful WDW trip for myself and my DS14 who have separate issues (seizure / migraine issues for me, ADHD, OCD, behavioral and emotional issues for DS14). As an adult who recently started topomax, I wanted to let you know that it changes the way some food tastes. Foods that I normally liked suddenly taste weird. My doctor warned me this may happen, I'm not sure how old your son is or if your doctor warned you this may happen. It might help explain a little bit about the lost of appetite though. I know I've lost 8 lbs since I've started the new med, but...well I had it to lose. Just thought I'd let you know. I hope your son is doing better.

 

[D L and K's Mom]

3Disneynuts. I am so happy you had a great experience with the Cm's and the GAC pass. We have alwasy had great luck with the. I have always found the Cm's to be kind and wonderful. I don't mean to change the subjest but you said you had a stroller that reclined....can I ask the name of the stroller? DS is 15 and his stroller/chair is just not working ...he is to big and it is uncomfortable for him. Any info you have will be greatly appreciated. Thanks.

 

[mommie2angels]

torianne31, do your taste change now or was it just when you started taking the topomax? My dd will eat really well somedays. Other days she doesn't want anything. She will take a bite and then stop eating. She has been on Topomax for awhile though so maybe it's something else. Just thought I would check with you though. Thanks for sharing!