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

[torianne31]

I started on the topomax at the beginning of February and had to do the "build up" thing - start off with a small dose and gradually build up to my actual dosage (I still have a little way to go until I reach "full dosage" status). I didn't notice any changes at first (thought my doc was nuts) but within the past two - three weeks, I have noticed a definite change. For example, my doctor kept telling me to give up sodas and it was very hard for me before, but not anymore. Now they just taste too weird. I've noticed it with other "regular" foods I've always eaten too. I know kids' diets can be somewhat exclusive and if the medication has made the flavor of their "staple" foods change, I can only imagine the effect it would have on their willingness to eat. If my doctor hadn't explained this possible side effect to me I would have thought something had happened to my tastebuds / appetite. I would wonder with kids if they would be able to express the fact that the foods they are used to eating all of a sudden tasted "different".

 

[torianne31]

I forgot to add, some food still tastes fine, while the taste of others are affected. I wonder if it would help to keep track of the food your daughter eats on "good" days and the foods she picks at. It could be she picks at the foods that taste "off" for her. Also, this could be totally different for kids. It could just totally suppress their appetites. I just thought it was worth mentioning in case it could help.

 

[3DisneyNUTS]

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.

Thanks I was told carbonated beverages taste differently so I assumed that it would probably cross over to foods. He has been addicted to cheese and mayo sandwiches now that is new but I am not sure if tha is because it taste differently.

We have made it a month seizure free. So at least he had a break.

 

[3DisneyNUTS]

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.

Chris still fits in a typical stroller that is why it reclined. It is really for toddlers. But I have heard raves about the special needs McClaren stroller. I will find a link. This doesn't recline but it has inserts and it looks wonderful. The best thing too is it is light and strong!
http://www.adaptivemall.com/mainbug.html

 

[D L and K's Mom]

Thank you so much for the info. We have a "fitting" in a few weeks at a "Wheelchair" place that does carry strollers. I am curious as to waht they have . The mcLaren looks GREAT. I will as k to see one. thanks again.

 

[4fosterkids]

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.

My son is 12 and has had uncontrolled seizures since age 3. He has been on 8 meds, the keto diet and had the VNS implanted...so I can relate to all the posts. While he was on Topamax we had problems with overheating and he became unable to sweat at all. We had to really watch him for heat stroke and try to keep him really well hydrated. He also lost some of his appetite as well as much of his speech. Needless to say this was not a good drug of choice for him.
He loves Disneyland/DCA but can only handle a few hours at a time, and always has a bad night of seizures when we have gone. Guest relations has always been very helpful for us too.
We are going on the Magic this summer, so I'm trying to prepare for that!
Jill

 

[BeccaGrace]

Not a Disney-related question but for those of you with kids with seizure disorders...are there any message boards or websites you would recommend specifically about seizures & related issues?

DH has a seizure disorder (controlled with meds for 7 years before one seizure 13 months ago) and now DD2 has had multiple febrile seizures with one lasting 15+ minutes and all with fevers under 102 degrees. She takes Diastat at the time of seizure but her neurologist wants to start her on prophalactic meds and I'd like to have lots of info weighing the pros & cons before our conference next week. Especially worried because he mentioned Topamax at our last appointment and Becca is tiny for her age to begin with and also a bit delayed with language and the side effects seem they might be too much for her...

Any direction would be greatly appreciated!!! Thanks!

 

[3DisneyNUTS]

Not a Disney-related question but for those of you with kids with seizure disorders...are there any message boards or websites you would recommend specifically about seizures & related issues?

DH has a seizure disorder (controlled with meds for 7 years before one seizure 13 months ago) and now DD2 has had multiple febrile seizures with one lasting 15+ minutes and all with fevers under 102 degrees. She takes Diastat at the time of seizure but her neurologist wants to start her on prophalactic meds and I'd like to have lots of info weighing the pros & cons before our conference next week. Especially worried because he mentioned Topamax at our last appointment and Becca is tiny for her age to begin with and also a bit delayed with language and the side effects seem they might be too much for her...

Any direction would be greatly appreciated!!! Thanks!

Sara, I have been on the Epilespyfoundation.org ecommunities parents helping parents board. They are so supportive even when you just pop in like I do. I would start there I can get a list of all my links together too and PM you. It will take me a while though LOL.

 

[BeccaGrace]

Thank you--I posted over on the epilepsy foundation board. I appreciate it!