Epilepsy - spin off from disABILITIES Thread

[poohbear7]

Thank you we try our best. My grandson went to a pediatric behavioral physcologist. He was the one who said his behavior was caused by his seizures and the pediatric neurologist would be the one to treat him.
I'm glad you were able to get an appointment so soon. I hope your appointment goes well and you get some answers. That's like the route we took. First a behavioral Pediatrition that diagnosed ADHD and sensory issues then a behavioral physcologist who said it was physical and he wouldn't need to see him again. Then finally the Pediatric neurologist which is were we got our answers from. He will be seeing the behavioral Pediatrition and Pediatric neurologist on a regular bases until they get his medication the right doses..


Have a great trip and I hope all goes well.

 

[tinker girl]

I wanted to stop in and see how all are doing!

 

[Holly Sox]

Very frustrated and not liking my son's epilepsy very much this week. Cody had a 2 minute seizure Saturday and then spent the rest of the day having to be redirected and reassured, because he kept thinking he needed to get ready for school.

Every day that goes by is another day closer to an uncertain future that just scares me to death. I don't want to smother him and protect him in bubble wrap, but I am just afraid for him.

Somebody remind me about all those famous and important people who have thrived in spite of epilepsy.

Holly

 

[tinker girl]

holly sox sorry you had a bad week it sounds like you and I are on the same page. Liam is not doing well this week he woke up at 6am having a bad one. its been non stop since. WHY???

 

[tinker girl]

hey holly how is cody this week?

 

[Holly Sox]

Hi everyone..
I haven't gotten my email updates from this thread, so I am sorry that I missed the last post!

Cody is about the same. He's had 4 seizures in the past month. Thankfully, most were at home and didn't cause too much disruption. I am trying so hard to live in the moment and not work myself up about the future, but I know there are things I need to be prepared for.

He told me something today he had never told me before, that made me feel good for him.. Last year, after the freshman orientation at his high school, we went to Walmart to buy school supplies. He had one of the worst seizures of his life in the store, and it was really traumatic. The employees were great, and some bystanders were really helpful, but others stood and gawked. Anyway, we were at Walmart today, and he said, "I remember when I had that really bad seizure here last year." I told him that I did too. And he said that when school started, a girl had told him she was at the store and saw what happened, and that she just hoped he was okay.

I am glad that most of the kids his age seem to understand how hard it is for him. The jerks are outnumbered, but I wish they weren't there at all.


to all of us who parent these wonderful kids!

Holly

 

[SueM in MN]

Anyway, we were at Walmart today, and he said, "I remember when I had that really bad seizure here last year." I told him that I did too. And he said that when school started, a girl had told him she was at the store and saw what happened, and that she just hoped he was okay.

I am glad that most of the kids his age seem to understand how hard it is for him. The jerks are outnumbered, but I wish they weren't there at all.


to all of us who parent these wonderful kids!

Holly

That's really cool.
We had one of those types of situations in the mall food court a few years ago. DD was sitting with me at a table and a group of young guys came by. One of them said 'hi' to her, using her name. As they walked away, one of the other kids asked how he knew her. His response was "She's just a girl in my history class." Even though my DD is non-verbal, she understands and I was really happy for her to be "just a girl."

 

[tinker girl]

well bad news liams EEG showed that his epilepsy is getting worse has he gets older. what now??? his teacher called and told me she is noticing that his attention span is getting shorter and shorter as the days go by. neuro doc says the fits have nada to do with it and to have him seen by a shrink. help......
R

 

[SueM in MN]

well bad news liams EEG showed that his epilepsy is getting worse has he gets older. what now??? his teacher called and told me she is noticing that his attention span is getting shorter and shorter as the days go by. neuro doc says the fits have nada to do with it and to have him seen by a shrink. help......
R

 

[Snoopymom]

well bad news liams EEG showed that his epilepsy is getting worse has he gets older. what now??? his teacher called and told me she is noticing that his attention span is getting shorter and shorter as the days go by. neuro doc says the fits have nada to do with it and to have him seen by a shrink. help......
R

No advice, but I understand. We're in the middle of the neuro vs psych void ourselves and I can't begin to describe how frustrating it is.

I don't understand why I keep reading how seizures affect behavior, but we can't find doctors who will listen to us and look at the behavior/symptom aspect.

Right now the increased dose of Trileptal has been our miracle, and I feel like I have my kid back, praying it lasts, at least until the school year is over.

I hope you can push the doctors to find something that will help...ugh! It makes me mad that we're dealing with enough, but we also have to "push" to get doctors to listen and work with us!

Hugs!
Cindy

 

[tinker girl]

No advice, but I understand. We're in the middle of the neuro vs psych void ourseelves and I can't begin to describe how frustrating it is.

I don't understand why I keep reading how seeizures affect behavior, but we can't find doctors who will listen to us and look at the behavior/symptom aspect.

Right now the increaseed dosee of Trileptal has been our miracle, and I feel like I have my kid back, praying it lasts, at least until the school year is over.

I hope you can push the doctors to find something that will help...ugh! It makes me mad that we're dealing with enough, but we also have to "push" to get doctors to listen and work with us!

Hugs!
Cindy

If any body would understand its me. the problem I am having is that no psych doc will see him becausee of the epilepsy. they don't think he needs it.???? go figure

 

[tinker girl]

its been a bit i wanted to see how all are doing....I hope you find your way back.

 

[alizesmom]

I'm still here. We're still weaning Alize from phenobarb to all keppra. One partial seizure after that last change but I can live with that. Karen

 

[tinker girl]

sounds good glad to get a good update!

 

[disneywithfive]

Thanks to everyone for posting about their situations. We were just told that our 4 year old daughter has Lennox Gastaut Syndrome and of course, we are overwhelmed. She started having seizures in November and for a short time, they were under control but we are having them again.

We originally planned a week long trip to Disney in June but I'm having second thoughts. For those of you who have gone, did you experience seizures while on your trip and if so, how did you handle it. We have a follow up with both of her doctors next month and I'm going to talk with them about this but I wanted some first hand information to help guide us too.

We live about 3.5 hrs from Disney so we would drive. It's not that far but it can be a world away when you need medical care from the doctors that you trust.

 

[tinker girl]

hey and welcome!!

I think if you are going to take a trip Disney would be the best place to go. There are all the kids that go there for there wish trips and a lot of them are a lot worse than your or my child. I would imagine that they would be able to deal with any thing that may happen if any thing at all does.

 

[disneywithfive]

hey and welcome!!

I think if you are going to take a trip Disney would be the best place to go. There are all the kids that go there for there wish trips and a lot of them are a lot worse than your or my child. I would imagine that they would be able to deal with any thing that may happen if any thing at all does.

Thanks. Sometimes I just need an outside source to reassure me that I'm making the right decision. The kids are so excited about going.

 

[alizesmom]

Alize had no seizure while there but we came prepared with his diastat. I found the people at the first aid stations friendly and willing to help though I don't know how much they are allowed to do. I vote you go and enjoy yourself. Karen

 

[Cheshire Figment]

Alize had no seizure while there but we came prepared with his diastat. I found the people at the first aid stations friendly and willing to help though I don't know how much they are allowed to do. I vote you go and enjoy yourself. Karen

All the first aid stations are staffed by RNs. And if they cannot help you, there is actually a paramedic team in each of the parks (except Epcot) backstage during park hours. (Epcot backstage is right next to the main Fire Station with a direct link and they have EMTs there.)

 

[steffali]

Hi everyone I just came upon this thread. My DD was born with hydrocephalus and has multiple disabilities, she is 21 years old now.
She had her first seizure at 10 months old and has been on a lot of different meds. She went 10 years without any seizures until she had to have surgery for her shunt to be revised. Ever since then (2 years ago) she gets them for no rhyme or reason. She is on Trilleptal and Topomax. She doesn't get them as much as she use to but she does still get them bad where she has to be taken to the ER and given adavan.
My daughter did have a seizure ( after the illuminations cruise) back in our hotel at the POLY. The staff was so nice there and the ambulance came and took us to Celebration. They stabilized her there and of course made sure her shunt was functioning ok then sent us back once she was fine.
The next day we stayed back at the POLY and just relaxed. The staff at the Concierge re arranged our dinner reservations for the rest of the week and everything else was fine. Disney is always my safe haven for vacations and even when the worst happens.
We always have DIASTAT with us but we have never used it. FOr some reason we have always called an ambulance and taken her to the ER.
Sorry its a long post I am just happy to have found this thread.