Epilepsy - spin off from disABILITIES Thread

[alizesmom]

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

Where in PA are you from? We're between Pittsburgh and Erie. Alize gets all of his care at Pittsburgh Children's. We see Dr Crumrine for neurology. Karen

 

[tinker girl]

Where in PA are you from? We're between Pittsburgh and Erie. Alize gets all of his care at Pittsburgh Children's. We see Dr Crumrine for neurology. Karen

we just started going to ch pitt to see DR Naik, DR crumrine was full. we are in Breezewood .

 

[poohbear7]

Has any one had problems after an EEG? My grandson had a second one yesterday. He seemed ok after but last night he started throwing up and didn't feel well. This morning when he woke up he had slurred speech which he never had before. Any help would be appreciated thanks.

 

[alizesmom]

Has any one had problems after an EEG? My grandson had a second one yesterday. He seemed ok after but last night he started throwing up and didn't feel well. This morning when he woke up he had slurred speech which he never had before. Any help would be appreciated thanks.

Sounds like a coincidence to me but vomiting and slurred speach can mean something neurological is going on. Watch him closely and call his doctor.
Karen

 

[Holly Sox]

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

Sorry for the delay in responding. Just got back today from Cody's wish trip to the magical place.

Cody's very first seizure episode progressed to a tonic-clonic. He was on a field trip from school in 2nd grade and felt bad, so the school called and asked me to pick him up. I worked about an hour away, so I called my MIL to pick him up. While she was on the way, the school nurse called me and said she was calling 911 because he was acting like he'd had a seizure. By the time the ambulance got there he was having the tonic-clonic convulsions. He was unconscious for hours. Then, he didn't have another for almost 6 months. The partials started in 4th grade. He was diagnosed with ADHD and depression... what was really happening was seizures and disorientation and who wouldn't be depressed??

Be your son's advocate. (I know you know that. ) You have the right to request an IEP meeting at any time. If you feel his needs aren't being met (and believe me, emotional and social needs are every bit as important as educational needs), insist that they keep working with you to find a way to meet them. I refuse to take the easy answer ever, unless it seems right to me. I may be their nightmare, but I know I am doing what's best for my son.



Holly

 

[tinker girl]

Sorry for the delay in responding. Just got back today from Cody's wish trip to the magical place.

Cody's very first seizure episode progressed to a tonic-clonic. He was on a field trip from school in 2nd grade and felt bad, so the school called and asked me to pick him up. I worked about an hour away, so I called my MIL to pick him up. While she was on the way, the school nurse called me and said she was calling 911 because he was acting like he'd had a seizure. By the time the ambulance got there he was having the tonic-clonic convulsions. He was unconscious for hours. Then, he didn't have another for almost 6 months. The partials started in 4th grade. He was diagnosed with ADHD and depression... what was really happening was seizures and disorientation and who wouldn't be depressed??

Be your son's advocate. (I know you know that. ) You have the right to request an IEP meeting at any time. If you feel his needs aren't being met (and believe me, emotional and social needs are every bit as important as educational needs), insist that they keep working with you to find a way to meet them. I refuse to take the easy answer ever, unless it seems right to me. I may be their nightmare, but I know I am doing what's best for my son.



Holly

how do you get info for make a wish?

 

[alizesmom]

how do you get info for make a wish?

wish.org/ is the website. Anyone can refer a child. You'll give them the name of the child's doctor whom they will contact. Then Make a Wish will decide if the child is eligible. Karen

 

[Snoopymom]

Sorry for the delay in responding. Just got back today from Cody's wish trip to the magical place.

Cody's very first seizure episode progressed to a tonic-clonic. He was on a field trip from school in 2nd grade and felt bad, so the school called and asked me to pick him up. I worked about an hour away, so I called my MIL to pick him up. While she was on the way, the school nurse called me and said she was calling 911 because he was acting like he'd had a seizure. By the time the ambulance got there he was having the tonic-clonic convulsions. He was unconscious for hours. Then, he didn't have another for almost 6 months. The partials started in 4th grade. He was diagnosed with ADHD and depression... what was really happening was seizures and disorientation and who wouldn't be depressed??

Be your son's advocate. (I know you know that. ) You have the right to request an IEP meeting at any time. If you feel his needs aren't being met (and believe me, emotional and social needs are every bit as important as educational needs), insist that they keep working with you to find a way to meet them. I refuse to take the easy answer ever, unless it seems right to me. I may be their nightmare, but I know I am doing what's best for my son.



Holly

A wishtrip, that's fantastic!

How scary for his first seizure! I guess I consider us lucky to be able to kind of prepare.

I don't get why a lot of parents have to fight with the schools. You'd think they'd want to make it easier for themselves too.

Thanks so much for all the info!

 

[Snoopymom]

Has any one had problems after an EEG? My grandson had a second one yesterday. He seemed ok after but last night he started throwing up and didn't feel well. This morning when he woke up he had slurred speech which he never had before. Any help would be appreciated thanks.

I'm sorry I haven't been around. Alex did not experience anything like that after his EEG, so I'm not sure. He does get dizzy and throws up quite frequently. Please let me know what the doctor said. The slurred speech sounds scary. Are you scheduled for an CAT or an MRI next?

Hugs!
Cindy

 

[DisneyDreamerz]

Hello everyone,
I'm glad I stumbled upon this thread. My son, now 15 1/2 had a traumatic brain injury when he was 2 1/2 from a fall over the side of our basement stairs, landing head first on the concrete floor. He was left with learning disabilities, fine and gross motor delays (Gross motor is fine now), and epilepsy...simple partials, complex partials, and tonic clonics.
In 2005 we went to Disney through the Make A Wish Foundation, but Ryan's seizures were so severe that he has no memory of the trip....when he hit puberty, everything went haywire with his seizures. He is doing well on his meds right now (Carbatrol, Lamictal, and Lyrica....Lyrica being the newest as of Jan. 2006), but his behavior has been "not so good" lately.
He usually has a very difficult time from September to January anyway....we believe it may be due to a new school year (this year a new school, teachers, etc), change in weather, and the excitement of the holidays....this year even more so since we've been saving for two years to return to Disney from Dec. 23-Jan. 3! Hopefully he will remember this trip!
Anyway, someone mentioned their child having had a "meltdown" recently at school.....could you please elaborate a little more on that. My son had a "meltdown" at school this week too.....he got so far out of control, he could not get back under control without the help of Ativan...a trip to the ER, etc. It's been a very long and stressful week!
I understand everyone's frustration, sadness, etc when it comes to their child and all that they have to endure. I'm just wondering if these "spells", "episodes", "meltdowns" or whatever you want to call them are actually seizures???
My son's simple partials are usually characterized by nausea, but sometimes he says he "feels weird"....like he's not himself, or he feels tingly all over, etc. His complex partials are the lip smacking, swallowing sounds, picking at things, wandering, etc. His tonic clonic are clasping his hands together, becomes very stiff and rigid, and just trembles all over....usually turning blue, then he goes limp.
He has an IEP and is in a self-contained classroom. I think he becomes overwhelmed at times and just shuts down or gets very agitated which turns to anger, then he gets beyond self-control. We are meeting this week to come up with possible behavior management strategies when he seems to be getting overwhelmed!
Any and all advice would be greatly appreciated! Thanks for starting this thread!!!

 

[Holly Sox]

Hello everyone,
I'm glad I stumbled upon this thread. My son, now 15 1/2 had a traumatic brain injury when he was 2 1/2 from a fall over the side of our basement stairs, landing head first on the concrete floor. He was left with learning disabilities, fine and gross motor delays (Gross motor is fine now), and epilepsy...simple partials, complex partials, and tonic clonics.
In 2005 we went to Disney through the Make A Wish Foundation, but Ryan's seizures were so severe that he has no memory of the trip....when he hit puberty, everything went haywire with his seizures. He is doing well on his meds right now (Carbatrol, Lamictal, and Lyrica....Lyrica being the newest as of Jan. 2006), but his behavior has been "not so good" lately.
He usually has a very difficult time from September to January anyway....we believe it may be due to a new school year (this year a new school, teachers, etc), change in weather, and the excitement of the holidays....this year even more so since we've been saving for two years to return to Disney from Dec. 23-Jan. 3! Hopefully he will remember this trip!
Anyway, someone mentioned their child having had a "meltdown" recently at school.....could you please elaborate a little more on that. My son had a "meltdown" at school this week too.....he got so far out of control, he could not get back under control without the help of Ativan...a trip to the ER, etc. It's been a very long and stressful week!
I understand everyone's frustration, sadness, etc when it comes to their child and all that they have to endure. I'm just wondering if these "spells", "episodes", "meltdowns" or whatever you want to call them are actually seizures???
My son's simple partials are usually characterized by nausea, but sometimes he says he "feels weird"....like he's not himself, or he feels tingly all over, etc. His complex partials are the lip smacking, swallowing sounds, picking at things, wandering, etc. His tonic clonic are clasping his hands together, becomes very stiff and rigid, and just trembles all over....usually turning blue, then he goes limp.
He has an IEP and is in a self-contained classroom. I think he becomes overwhelmed at times and just shuts down or gets very agitated which turns to anger, then he gets beyond self-control. We are meeting this week to come up with possible behavior management strategies when he seems to be getting overwhelmed!
Any and all advice would be greatly appreciated! Thanks for starting this thread!!!

Hi Wendy,
Isn't it delightful dealing with adolescence and epilepsy together?

I know that one of Cody's medications can cause wild mood swings and the other makes him very blunted. I think they sort of even themselves out most of the time, but he has very little tolerance for frustration. He has had a behavioral plan along with his IEP since 5th grade and he has learned to recognize his warning signs. His IEP allows him to take a time out whenever he feels like he needs it.

I also think there is some validity to the idea that these kids may be having unrecognized seizures. In an earlier post I wrote about Cody's 5th grade year. He would get up in class, lie down on the floor, walk up to his teacher and try to sit in her lap, or just start crying. We finally determined that he was having partial complex seizures that caused him to lose time. Imagine blinking your eyes and discovering 30 minutes have passed. Last thing you remember, your class was doing music. Now you're on fractions. Can you imagine how confusing and scary that must be? Of course they get combative. Of course they act out.

I am glad you responded here. It's nice to "meet" others in the same situation. Did you stay at GKTW on your son's wish trip? We just got home yesterday.. gotta go back to work tomorrow.

Holly

 

[Jennifer823]

Hello everyone,
I'm glad I stumbled upon this thread. My son, now 15 1/2 had a traumatic brain injury when he was 2 1/2 from a fall over the side of our basement stairs, landing head first on the concrete floor. He was left with learning disabilities, fine and gross motor delays (Gross motor is fine now), and epilepsy...simple partials, complex partials, and tonic clonics.
In 2005 we went to Disney through the Make A Wish Foundation, but Ryan's seizures were so severe that he has no memory of the trip....when he hit puberty, everything went haywire with his seizures. He is doing well on his meds right now (Carbatrol, Lamictal, and Lyrica....Lyrica being the newest as of Jan. 2006), but his behavior has been "not so good" lately.
He usually has a very difficult time from September to January anyway....we believe it may be due to a new school year (this year a new school, teachers, etc), change in weather, and the excitement of the holidays....this year even more so since we've been saving for two years to return to Disney from Dec. 23-Jan. 3! Hopefully he will remember this trip!
Anyway, someone mentioned their child having had a "meltdown" recently at school.....could you please elaborate a little more on that. My son had a "meltdown" at school this week too.....he got so far out of control, he could not get back under control without the help of Ativan...a trip to the ER, etc. It's been a very long and stressful week!
I understand everyone's frustration, sadness, etc when it comes to their child and all that they have to endure. I'm just wondering if these "spells", "episodes", "meltdowns" or whatever you want to call them are actually seizures???
My son's simple partials are usually characterized by nausea, but sometimes he says he "feels weird"....like he's not himself, or he feels tingly all over, etc. His complex partials are the lip smacking, swallowing sounds, picking at things, wandering, etc. His tonic clonic are clasping his hands together, becomes very stiff and rigid, and just trembles all over....usually turning blue, then he goes limp.
He has an IEP and is in a self-contained classroom. I think he becomes overwhelmed at times and just shuts down or gets very agitated which turns to anger, then he gets beyond self-control. We are meeting this week to come up with possible behavior management strategies when he seems to be getting overwhelmed!
Any and all advice would be greatly appreciated! Thanks for starting this thread!!!

A lot of times seizures that occur in the temporal lobes of the brain can manifest themselves as emotional or behavioral problems. There are some good books on this subject, one I read was called "Seized" by Eve LaPlante.

 

[poohbear7]

I'm sorry I haven't been around. Alex did not experience anything like that after his EEG, so I'm not sure. He does get dizzy and throws up quite frequently. Please let me know what the doctor said. The slurred speech sounds scary. Are you scheduled for an CAT or an MRI next?

Hugs!
Cindy

He had a CT scan the next morning in hospital after his 2nd seizure and an MRI on Nov.3. This was his 2nd EEG as they saw seizure problems on the first one so they wanted a 2nd to compare. He had no trouble after his first EEG. It took over 2 weeks to get the results.
He got better as the morning went on. The Dr. doesn't know why he had the slurred speech and is waiting for him to see a neurologist on the 22nd Nov.
The pedatrition thinks his mood swings and behavour are physical and caused by seizure activity. He doesn't think it's a behavoural problem and anti seizure medication should help. I sure hope so he has been through so much these past months. He has been missing a lot of school. The school calls most afternoons for me to pick him up as he doesn't feel well. I think the teacher is afraid he may have another seizure in class. I know it was scary for the other children in his class. Like a lot of us it's hard for us to understand what is happening to our children and it's even harder for them. I hope we can get some answers on the 22nd. Yes the slurred speech was scary and we kept a very close watch on him.

 

[Snoopymom]

A lot of times seizures that occur in the temporal lobes of the brain can manifest themselves as emotional or behavioral problems. There are some good books on this subject, one I read was called "Seized" by Eve LaPlante.

Thanks Jennifer,

I'm just learning about ds's temporal lobe seizures, so I really appreciate it.

Anyone else have any book recommendations? I've only found two for adult epilepsy at the library. Borders always has the same two also.

 

[Snoopymom]

He had a CT scan the next morning in hospital after his 2nd seizure and an MRI on Nov.3. This was his 2nd EEG as they saw seizure problems on the first one so they wanted a 2nd to compare. He had no trouble after his first EEG. It took over 2 weeks to get the results.
He got better as the morning went on. The Dr. doesn't know why he had the slurred speech and is waiting for him to see a neurologist on the 22nd Nov.
The pedatrition thinks his mood swings and behavour are physical and caused by seizure activity. He doesn't think it's a behavoural problem and anti seizure medication should help. I sure hope so he has been through so much these past months. He has been missing a lot of school. The school calls most afternoons for me to pick him up as he doesn't feel well. I think the teacher is afraid he may have another seizure in class. I know it was scary for the other children in his class. Like a lot of us it's hard for us to understand what is happening to our children and it's even harder for them. I hope we can get some answers on the 22nd. Yes the slurred speech was scary and we kept a very close watch on him.

I'm so glad your grandson got better. Alex is always a different person after getting some sleep.

I'm also counting the days to our appointment next week, on the 20th, so I'll be thinking about you.

We've been having to pick up Alex just about every other day too. Friday, he had been in the nurses office and was sucking on his arm when dh got to the school. He ended up with a huge reddish purple mark, and said he didn't know how he got it.

He also said that when he walked into the restroom the other day, two of his classmates acted afraid of him and backed away.

It sure is heartbreaking.

Hugs,
Cindy

 

[tinker girl]

So I get a call from DS teacher and she tells me Liam is not acting like himself . So I ask whats up and she goes on to tell me he held scissors to his head and said I want to kill myself. Well I about fell of the sofa and asked what he was doing when this happend she tells me he was on the computer. I noticed last week when he was on the computer he kept saying I hate this. Thats not like him at all. He had been a bit down the past little bit knowing now that he takes meds everyday and he has a medical problemand other kids don't. So I thought the last computer fit has to do with that. Does anybody think the computer is causing this? Or could it be him?

 

[Jennifer823]

The Epilepsy Foundation's website has a marketplace with 42 books! Their website is great. Here's the link to the book section of their marketplace:

http://store.epilepsyfoundation.org/EpilepsyStore/SearchByTreeAction.do?tree=PRI&categorySelect=2100

 

[tinker girl]

poohbear7 glad your grandson is ok!

 

[Jennifer823]

I think computers can cause seizures - http://www.epilepsyfoundation.org/answerplace/Medical/seizures/precipitants/photosensitivity/photosensitivity.cfm You should probably call the doctor about this, he may need a change in his meds.

 

[Snoopymom]

Hello everyone,

He usually has a very difficult time from September to January anyway....we believe it may be due to a new school year (this year a new school, teachers, etc), change in weather, and the excitement of the holidays....this year even more so since we've been saving for two years to return to Disney from Dec. 23-Jan. 3! Hopefully he will remember this trip!

I've read that heat can be a trigger, and when I think back on last year before Alex was diagnosed, he had an easier time in the winter months. I've also been wondering if it could be from getting more sleep during the longer nights.

[/QUOTE]Anyway, someone mentioned their child having had a "meltdown" recently at school.....could you please elaborate a little more on that. My son had a "meltdown" at school this week too.....he got so far out of control, he could not get back under control without the help of Ativan...a trip to the ER, etc. It's been a very long and stressful week! [/QUOTE]

Alex's are triggered by frustration, embarrassment, anything that makes him angry and he gets out of control, hits, kicks, throws things, yells, won't let anyone touch him, sometimes wets himself, has a dark face and flat voice, and doesn't remember them at all or doesn't remember them as they were. Ativan is on my list to ask the new neuro we're seeing next week. We have needed it. He's 7 and small so we can still hold him down so he doesn't hurt us or himself, but that's hard to do for any length of time, and that's usually when he starts get irrationally scared and thinks we're trying to hurt him.


[/QUOTE] I understand everyone's frustration, sadness, etc when it comes to their child and all that they have to endure. I'm just wondering if these "spells", "episodes", "meltdowns" or whatever you want to call them are actually seizures??? [/QUOTE]

It took a while for us to understand and recognize them, still have trouble when they don't seem to be sudden or as extreme. The neurologist explained it to us as the strong emotion is the trigger for the seizure and then the switch for turning off the emotion does not work so when he gets angry, frustrated, scared, etc. it escalates to the point of losing control. I didn't really get this until I realized how intense his nightmares are...he falls over the cliff or gets eaten by the monster, there is no internal switch that tells him he's safe, like most people have when they're dreaming.

[/QUOTE]My son's simple partials are usually characterized by nausea, but sometimes he says he "feels weird"....like he's not himself, or he feels tingly all over, etc. His complex partials are the lip smacking, swallowing sounds, picking at things, wandering, etc. His tonic clonic are clasping his hands together, becomes very stiff and rigid, and just trembles all over....usually turning blue, then he goes limp. [/QUOTE]
[/QUOTE]

Alex throws up, gets dizzy and has nausea A LOT. He says he feels like a cartoon character or like when the satellite dish is going out. He is constantly falling so I'm looking out for atonics, and we've had one incident of lip smacking and humming.

Thanks so much for sharing. It really helps me and lots of hugs to you!

sorry for the one big quote, tried to reply separately, maybe this will work?