Epilepsy - spin off from disABILITIES Thread

[tinker girl]

November is epilepsy awareness month. I wanted to know... Are there are any parents that would be interested in starting an Epilepsy thread? I have a hard time finding parents to talk to about this and because I am a young parent it makes it that much harder. I will leave this as the thread and if you wish to join in please feel free to!

 

[Snoopymom]

November is epilepsy awareness month. I wanted to know... Are there are any parents that would be interested in starting an Epilepsy thread? I have a hard time finding parents to talk to about this and because I am a young parent it makes it that much harder. I will leave this as the thread and if you wish to join in please feel free to!

Hi

A few kind souls here recommended this site to me when my ds 7 was diagnosed earlier this year.

http://www.epilepsyfoundation.org/efforums/forum/categories.cfm?catid=2

If the link doesn't work, it's the parents helping parents on the ecommunities of the www.epilepsyfoundation.org site.

I have just started to participate, same user name Snoopymom.

Everyone has been wonderful!

Ds has temporal lobe seziures which present themselves differently than most are familiar with, sudden mood swings and rages, nightmares, feelings of fear, dizziness and falling....he appears to be an out of control bad kid at times, so I completely get feeling like there is no one to talk to, no one who will understand.

I'm counting down the days until we see one of the top pediatric epi neuros in the country on Nov 20th. I hope he has some answers because life is so hard right now. We have a Disney trip planned for Dec 1st and I'm almost dreading it.

Hugs!
Cindy

 

[poohbear7]

Hi Cindy, my grandson is thought to have temporal lob seizers. He has the same symptoms as your son. We will find out more when he sees the pediatric neuroligist on Nov. 22nd. He was sent to a behavioral phycoligist(sp) and a behavioral pedatriction and when they read his eeg he said he was 99.9% sure he had temporal lob seizers. He said it could be causing his behavioral problems. He is having a second eeg so they can compare it to the first one he had after his 2nd seizer in hospital. I know he is so good sometimes and then it's like someone flips a switch and he is so hard to handle. Does your son remember his outbursts my grandson often doesn't remember what he did?
I wish you and your son all the best at his appointment and hope you can get some answers.

 

[Snoopymom]

Hi Cindy, my grandson is thought to have temporal lob seizers. He has the same symptoms as your son. We will find out more when he sees the pediatric neuroligist on Nov. 22nd. He was sent to a behavioral phycoligist(sp) and a behavioral pedatriction and when they read his eeg he said he was 99.9% sure he had temporal lob seizers. He said it could be causing his behavioral problems. He is having a second eeg so they can compare it to the first one he had after his 2nd seizer in hospital. I know he is so good sometimes and then it's like someone flips a switch and he is so hard to handle. Does your son remember his outbursts my grandson often doesn't remember what he did?
I wish you and your son all the best at his appointment and hope you can get some answers.

Wow, thank you so much for sharing, I'm in tears...it has been a hard week. There are times when I almost wish he had the more common type of seizures. We've been to so many doctors and psychologists and after two years trying to figure out if it was RAD, reactive attachment diorder because he's adopted, bi-polar, adhd, you name it, a new psychologist suggested a neurologist and the EEG was without a doubt, abnormal. Fortunately no injury or tumor showed up on the CT scan. (He was 2 when he came home to us so that was a relief.) He is on Trileptal which is helping, but not enough for him to do well at school. It is exactly as you describe, like a switch. The psychologist told him it was a switch that he does not have the off button for. He either doesn't remember them at all or doesn't remember them to be as intense as they were. He says he feels like a cartoon character sometimes and sometimes it's like when the satellite dish goes out. He also wets himself when they happen, which is embarrassing and makes him shut down when I try to get him to talk about it. I could go on and on.

Thanks again and I wish you all the luck with your grandson...I'd like to keep in touch with you if you don't mind. Even on the Epilepsy site, I haven't found anyone with exactly the same type of seizures.

Hugs,
Cindy

oh and apologies to everyone for hijacking...kind of amazing how you find answers and help and support here though.

 

[Holly Sox]

November is epilepsy awareness month. I wanted to know... Are there are any parents that would be interested in starting an Epilepsy thread? I have a hard time finding parents to talk to about this and because I am a young parent it makes it that much harder. I will leave this as the thread and if you wish to join in please feel free to!

Thanks, TinkerGirl.
I can't believe I didn't know this was epilepsy awareness month. My son is 16 and has had seizures since 2nd grade. He has different types of seizures, with multiple foci. It makes it difficult, because I can't just tell people a blanket, "If he's having a seizure, it will look like xxxxx" Sometimes he has the simple partial, where he feels funny but is aware of what's going on . Sometimes he has the staring spell type (absence or petit mal) and is unaware and confused when he "snaps back". Sometimes he has complex partials where he has unusual lip, finger or hand/arm movements, speaks nonsensical speech or walks without knowing what he's doing. And sometimes he has full blown tonic-clonic (or grand mal) seizures. The complex partials scare me worse than anything, because often, no one but me or his dad recognize it as a seizure. He could walk off a step, into traffic, into a lake without knowing what he was doing. And kids at school think he's just weird. It breaks my heart when I hear stuff that has been said to him.

We are struggling now with letting him have some independence while still being careful. And with our trip coming Monday, I am having some major stress about how far to let him "roam".

Glad to "meet" all of you. I look forward to this thread growing. I don't know anyone IRL who really understands a lot of what I go through.

Holly in SC

 

[Holly Sox]

Wow, thank you so much for sharing, I'm in tears...it has been a hard week. There are times when I almost wish he had the more common type of seizures. We've been to so many doctors and psychologists and after two years trying to figure out if it was RAD, reactive attachment diorder because he's adopted, bi-polar, adhd, you name it, a new psychologist suggested a neurologist and the EEG was without a doubt, abnormal. Fortunately no injury or tumor showed up on the CT scan. (He was 2 when he came home to us so that was a relief.) He is on Trileptal which is helping, but not enough for him to do well at school. It is exactly as you describe, like a switch. The psychologist told him it was a switch that he does not have the off button for. He either doesn't remember them at all or doesn't remember them to be as intense as they were. He says he feels like a cartoon character sometimes and sometimes it's like when the satellite dish goes out. He also wets himself when they happen, which is embarrassing and makes him shut down when I try to get him to talk about it. I could go on and on.

Thanks again and I wish you all the luck with your grandson...I'd like to keep in touch with you if you don't mind. Even on the Epilepsy site, I haven't found anyone with exactly the same type of seizures.

Hugs,
Cindy

oh and apologies to everyone for hijacking...kind of amazing how you find answers and help and support here though.

Cindy,
This is very similar to what we went through with Cody in 4th/5th grade. He finally got approved for an IEP in 5th grade and went into a self-contained class. That saved his life, in many ways. He went from being so stressed about life that he wet the bed every night to being a much happier, calm child who has never once wet the bed since he switched classes. He's in 10th grade now and in regular classes with a resource period to help him stay organized.


I like the way you describe the on/off switch. I remember realizing with Cody that he could blink his eyes and find that it was 20 minutes later, with no clue how it had happened. How disorienting and confusing that must have been. Imagine going through that multiple times every day. No wonder he was freaking out and fighting... how scary it must have been.


The medication can be challenging... we've been through 7 different meds, with some causing horrendous side effects, some just not working at all.



Now I am just rambling. It's been a long week and we've got to get ready for our trip on MONDAY!!!!!!!!!!!!

Holly

 

[poohbear7]

Cindy yes please keep in touch. It took us many doctors before we got to were we are now. He also has ADHD so sometimes it's hard to know why he is acting like he does. They told us the seizer medicine the Neuroligist will put him on should help with his outbursts and behavour. I sure hope so as he has been having a rough time of it at school.

 

[Jennifer823]

November is epilepsy awareness month.

I just heard on the news, yesterday I think, that epilepsy is one disease where there just isn't much money for research. I think that's so stupid. Doesn't it seem that science knows the least about things related to the brain, and yet money isn't available?

BTW - I'd like to join your group too.

 

[SueM in MN]

I am moving the 'general' posts about Epilepsy from the thread on the other part of the disABILITIES Board that was about Epilepsy in WDW.

 

[alizesmom]

I'll be following this group. Alize has a "seizure disorder". I'm not sure why the docs don't just say epilepsy. He usually has generalized ones but recently changed to partials. We think he just outgrew his doses and Thursday his keppra was increased. So far, so good. Karen

 

[Jennifer823]

I'll be following this group. Alize has a "seizure disorder". I'm not sure why the docs don't just say epilepsy. He usually has generalized ones but recently changed to partials. We think he just outgrew his doses and Thursday his keppra was increased. So far, so good. Karen

I think a lot of doctors just would rather say "seizure disorder," because it's more politically correct. I've had a doctor who didn't even like to call them seizures, he called them "spells." Part of the whole stigma thing, I guess.

 

[whgrn]

I think a lot of doctors just would rather say "seizure disorder," because it's more politically correct. I've had a doctor who didn't even like to call them seizures, he called them "spells." Part of the whole stigma thing, I guess.

Oh for Heaven's sake! Am I the only one that thinks this kind of thing is ridiculous? OOH, we can't call it what it is, so lets call it what it isn't, so then no one will be offended but we will all be confused!

My daughter has epilepsy. She has seizures. She does NOT have "spells". Why on earth would anyone, especially a doctor, want to say that she does?

What is this world coming to?

I guess you'd have to call me a chronologically challenged, mobility challenged, visually challenged parent of an educationally challenged child who has spells. When what I really am is a stiff old woman with lousy eyesight whose daughter has learning disabilites and epilepsy.

Ay yi yi!!

(Climbing down off my soap box for now...)

 

[SueM in MN]

The use of the word "Spells" is really old; it sounds more 19th century than politically correct.

"Seizure Disorder" and "Epilepsy" have both been used for a long time. One of the reasons I have heard for changing to the use of "Seizure Disorder" is that it is more descriptive of what is going on. The other reason I have read is that "Epilepsy" sort of got a negative connotation (back when seizures were often called "Spells" or "Fits") and people with Epilepsy got the bad 'rap' of being thought of as voilent and/or dangerous!

Most medical books and articles use "Epilepsy" and "Seizure Disorder" interchangeably. The only difference in use is that epilepsy is not usually used talking about someone who has had only one seizure or who has had only febrile seizures (some kids have a seizure when they have a high fever). Kids tend to outgrow febrile seizures.

My youngest DD had her first seizure when she was about 9. I knew she was high risk for seizures because she has cerebral palsy which involves her whole body (in general, the more of the body affected by CP, the more chance of seizures). It was still a big shock when she had her first one.
Even with medication, she usually still has about 4 complex seizures a month, so we are kind of used to them (as much as you can get used to seeing that happen to your child). We could possibly get less seizures by increasing her medication, but there is a kind of narrow pathway between decreasing the seizures and having her so sedated that she can't move.

 

[Snoopymom]

Holly Sox

Thanks so much! It's good to hear someone's perspective who is a little bit farther down the road.

We just got Alex into an IEP a few weeks ago, and things are still so frustrating. I asked them to let him do something else for recess each day and they said no, and last week he had a "meltdown or spell" (they don't look like seizures so that's what they call them...) and now THEY said he can't have recess anymore. so now it's more like a punishment.

When I walked him to his friends house yesterday, I told him to come home if he starts to feel bad, and he said he just wants to be a normal kid, so I guess I better prepare myself for lots more heartache when it comes to his social life.

Home schooling is one thing I've learned my lesson with the never say never rule.

May I ask you when the clonic-tonic seizures started, at the same time as the partials? His bio mom has all types, so again, trying to prepare and learn as much as possible.

Thanks,
Cindy

 

[Snoopymom]

Cindy yes please keep in touch. It took us many doctors before we got to were we are now. He also has ADHD so sometimes it's hard to know why he is acting like he does. They told us the seizer medicine the Neuroligist will put him on should help with his outbursts and behavour. I sure hope so as he has been having a rough time of it at school.

We tried Concerta even though every doctor has ruled out ADHD and all it did was make him sick to his stomach. The Trileptal has helped tremendously, so I'm sure you will see results as soon as you start the seizure medicine, have hope

 

[Snoopymom]

I guess you'd have to call me a chronologically challenged, mobility challenged, visually challenged parent of an educationally challenged child who has spells. When what I really am is a stiff old woman with lousy eyesight whose daughter has learning disabilites and epilepsy.

Ay yi yi!!

(Climbing down off my soap box for now...)

Thanks for the laugh!

and thanks SueM for starting this and hi to everyone!

 

[tinker girl]

Hi to all! I am a 24 year old mom and can use the help in dealing with this. Ds has had epilepsy since the age of three he is now 5 almost 6. We have been to CHOP and CH PITT to find out what type of Epilepsy he has and the all have told us "we have no clue" They can say it is seizures he is having but all EEGs and tests are normal. This doc we just saw on Thurs. told us it may be in the deep part of the brain that is why we can ot see it on the test. We are now going to do another sleep deprived EEG (spelling? it was a long night)
and see what this one tells. He has been on Carbamazepine since the age of 4 ad it is doing the job (knock on wood). I guess all we can do is wait and
we'll see what happens next. If you have any info feel free to post!
thanks Rachel

 

[tinker girl]

PS: I know you can't ask for a tag but this is a very important request......

if the tag fairy just happens to pop in I would like to know if we can get epilepsy awareness tags all around! We need to spread the word.
I am proud to be the one to try and get it done!

 

[Jennifer823]

Hi to all! I am a 24 year old mom and can use the help in dealing with this. Ds has had epilepsy since the age of three he is now 5 almost 6. We have been to CHOP and CH PITT to find out what type of Epilepsy he has and the all have told us "we have no clue" They can say it is seizures he is having but all EEGs and tests are normal. This doc we just saw on Thurs. told us it may be in the deep part of the brain that is why we can ot see it on the test. We are now going to do another sleep deprived EEG (spelling? it was a long night)
and see what this one tells. He has been on Carbamazepine since the age of 4 ad it is doing the job (knock on wood). I guess all we can do is wait and
we'll see what happens next. If you have any info feel free to post!
thanks Rachel

Rachel,

I can relate! I had febrile seizures as a little kid then at the age of 25, out of nowhere, I had a generalized tonic/clonic seizure in my sleep. I went through the mill - CT scans, MRIs with and without contrast, three EEGs - nothing seen and no one could tell me what was wrong other than I have a seizure disorder. I was on many different anti-seizure meds for about 8 years when my doctor decided to wean me off because I found out I was pregnant! After being off meds for about a month, I had another seizure in my sleep. I had a high-risk pregnancy with my daughter and had to take Trileptal during the pregnancy, but she's turned out fine Trileptal is basically a form of Carbemazepine and I've been taking it with no problems at all. The doctors describe my epilepsy as "idiopathic," which means they don't know why I have it. The technology isn't good enough right now to be able to see a seizure focus. Your son must be in the same situation as me. There is lots of great info on the web, have you checked out the site for the Epilepsy Foundation? http://www.efa.org They have a very active forum! I hope you get some more answers.

Jennifer

 

[tinker girl]

Rachel,

I can relate! I had febrile seizures as a little kid then at the age of 25, out of nowhere, I had a generalized tonic/clonic seizure in my sleep. I went through the mill - CT scans, MRIs with and without contrast, three EEGs - nothing seen and no one could tell me what was wrong other than I have a seizure disorder. I was on many different anti-seizure meds for about 8 years when my doctor decided to wean me off because I found out I was pregnant! After being off meds for about a month, I had another seizure in my sleep. I had a high-risk pregnancy with my daughter and had to take Trileptal during the pregnancy, but she's turned out fine Trileptal is basically a form of Carbemazepine and I've been taking it with no problems at all. The doctors describe my epilepsy as "idiopathic," which means they don't know why I have it. The technology isn't good enough right now to be able to see a seizure focus. Your son must be in the same situation as me. There is lots of great info on the web, have you checked out the site for the Epilepsy Foundation? http://www.efa.org They have a very active forum! I hope you get some more answers.

Jennifer

thanks so much for that!