Epilepsy - spin off from disABILITIES Thread

[Snoopymom]

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

never noticed it or searched there, thanks!

 

[tinker girl]

DS is doing bettet we found out that stressers are causing the fits to come out. has any body had problems with things like this? He is not remembering some of the fits and also he is telling us things over and over????HELP

 

[Snoopymom]

DS is doing bettet we found out that stressers are causing the fits to come out. has any body had problems with things like this? He is not remembering some of the fits and also he is telling us things over and over????HELP

Yes we are having these almost daily now, and Alex will actually argue about whether or not something happened, etc. I did not realize that he really did not know until recently. It's very heartbreaking isn't it?

There are similiar questions and posts on the Ecommunities on the Epilepsy foundation site and I've learned about three drugs that I'm going to ask our doctor about when we see him next Tuesday.

Ativan for really bad rage type of behavior that will help calm hid down when needed, and

Risperidone and Lamictal for help more with the sudden mood swings and crazy behavior so that we might avoid the full blown fits.

Maybe you can check with your doctor too. Hope this helps a little.
Hugs,
Cindy

 

[tinker girl]

Yes we are having these almost daily now, and Alex will actually argue about whether or not something happened, etc. I did not realize that he really did not know until recently. It's very heartbreaking isn't it?

There are similiar questions and posts on the Ecommunities on the Epilepsy foundation site and I've learned about three drugs that I'm going to ask our doctor about when we see him next Tuesday.

Ativan for really bad rage type of behavior that will help calm hid down when needed, and

Risperidone and Lamictal for help more with the sudden mood swings and crazy behavior so that we might avoid the full blown fits.

Maybe you can check with your doctor too. Hope this helps a little.
Hugs,
Cindy

Thanks for the info. he goes from happy to flippin in like 2 seconds. It makes my head spin. the stress he is under is heart breaking.

 

[Snoopymom]

Thanks for the info. he goes from happy to flippin in like 2 seconds. It makes my head spin. the stress he is under is heart breaking.

Alex threw up his Trileptal yesterday, so it was a fun day. He lost a grip at his grandma's and locked me out of the car. When I got it open he threw the garage door opener and a bottle of water at me. I stayed calm because I was in shock (still shocks me when his mood changes so suddenly) and said, "there's a coloring book in that bag for you" and he got it out, crawled into the backseat and put his seatbelt on and started to talk about the pictures in the book like nothing happened, and then a few minutes later he was crying that his head hurt I gave him some Montrin and a quarter of his nighttime dose, figured it couldn't hurt, and he sat at the table and willingly did over an hour of homework. (His teacher gives him a weeks worth at a time, thankfully.) Anyway, I understand and thanks for listening.

 

[mommyandmore]

I'm wondering if anyone has had an experience like my son's with seizures? He was shaken by his birth father at 17 months- at that point he had a long (status) tonic-clonic seizure, has subdural taps, was comatose for 3 weeks, etc. He was on phenobarb as a precaution for 2 years- we never saw anything that looked like a seizure and he had all normal EEG's so he was weaned off of it in Dec 2005. Suddenly this August he started having seizures- they started off about 1x/week or so and he would get a really scared look on his face, would turn his head to the side and would smack his lips or swallow convolsively- sometimes he would walk into something over and over. At the end of August he also began having another type of seizure where his eyes rolled back and he would fall down, his whole body would tense and he would get blue int he face, etc. Very scarey! We went several times to his pediatrician but were having a hard time getting a refferal to a neurologist. Anyways, by mid-September he was having as many as 6 seizures a day, every day. I had to take him out of school because they just kept calling me to come and get him because he needed to sleep a couple of hours after each seizure. Finally got into the doctor on October 15th- by then seizures had slowed to 1 or 2 a day. At the end of October he went in to have a 24 hour EEG- it had been a week since his last seizure. Stayed in the hospital 48 hours and they didn't see anything on the EEG- he has not had a single seizure since then! Of course, I am happy they have stopped but I am on eg-shells- will they start again? I kind of also feel like the neurologist thinks I am crazy- but tons of other people witnessed the seizures, it is not like I am making them up! Good lord, he sent his entire elementary school into a panic each time he had one- there were plenty of witnesses. the neuro is also saying maybe it was the stress of starting Kindergarten and just to watch him in stressful situations. But they started before the school year even started so that doesn't make a lot of sense to me either.
So, anyone even heard of something like this before?

 

[Jennifer823]

It sounds like he needs to be back on the antiseizure meds. I was on Dilantin for almost 8 years with no seizures, so my neuro decided to wean me off. I was only off for about two months when I had another seizure. I think you should find another neurologist. If you need a referral that your pediatrician won't give you, maybe you should look for another pediatrician. I've never had anything show up on my EEGs, but I definitely had seizures! I hope you get some answers, but don't give up - find a doctor who is more understanding.

 

[tinker girl]

Alex threw up his Trileptal yesterday, so it was a fun day. He lost a grip at his grandma's and locked me out of the car. When I got it open he threw the garage door opener and a bottle of water at me. I stayed calm because I was in shock (still shocks me when his mood changes so suddenly) and said, "there's a coloring book in that bag for you" and he got it out, crawled into the backseat and put his seatbelt on and started to talk about the pictures in the book like nothing happened, and then a few minutes later he was crying that his head hurt I gave him some Montrin and a quarter of his nighttime dose, figured it couldn't hurt, and he sat at the table and willingly did over an hour of homework. (His teacher gives him a weeks worth at a time, thankfully.) Anyway, I understand and thanks for listening.

Liam has been telling my his eyes hurt after. neuro doc wants nothing to do with it she said"I don't think its neuro. you should take him to his pcp." but things are just like you said flippin out one min. next playing like nothing ever happend. WHAT TO DO?

 

[Snoopymom]

Liam has been telling my his eyes hurt after. neuro doc wants nothing to do with it she said"I don't think its neuro. you should take him to his pcp." but things are just like you said flippin out one min. next playing like nothing ever happend. WHAT TO DO?

I have heard of eyes hurting, squinting, and also, kind of looking up with head tilted down as a symptom. I think I'd try to find another pediatric neurologist, one who specializes in epilepsy. I noticed you're in PA. Here's the two local foundations and maybe they could recommend a doctor. I found the one we're seeing tomorrow through Children's Healthcare of Atlanta. I think I've heard about one in PA, CHOP?

http://www.epilepsyfoundation.org/aboutus/loader.cfm

 

[Snoopymom]

I'm wondering if anyone has had an experience like my son's with seizures? He was shaken by his birth father at 17 months- at that point he had a long (status) tonic-clonic seizure, has subdural taps, was comatose for 3 weeks, etc. He was on phenobarb as a precaution for 2 years- we never saw anything that looked like a seizure and he had all normal EEG's so he was weaned off of it in Dec 2005. Suddenly this August he started having seizures- they started off about 1x/week or so and he would get a really scared look on his face, would turn his head to the side and would smack his lips or swallow convolsively- sometimes he would walk into something over and over. At the end of August he also began having another type of seizure where his eyes rolled back and he would fall down, his whole body would tense and he would get blue int he face, etc. Very scarey! We went several times to his pediatrician but were having a hard time getting a refferal to a neurologist. Anyways, by mid-September he was having as many as 6 seizures a day, every day. I had to take him out of school because they just kept calling me to come and get him because he needed to sleep a couple of hours after each seizure. Finally got into the doctor on October 15th- by then seizures had slowed to 1 or 2 a day. At the end of October he went in to have a 24 hour EEG- it had been a week since his last seizure. Stayed in the hospital 48 hours and they didn't see anything on the EEG- he has not had a single seizure since then! Of course, I am happy they have stopped but I am on eg-shells- will they start again? I kind of also feel like the neurologist thinks I am crazy- but tons of other people witnessed the seizures, it is not like I am making them up! Good lord, he sent his entire elementary school into a panic each time he had one- there were plenty of witnesses. the neuro is also saying maybe it was the stress of starting Kindergarten and just to watch him in stressful situations. But they started before the school year even started so that doesn't make a lot of sense to me either.
So, anyone even heard of something like this before?

I've heard lots of times how seizures can come in phases, or they can start back at certain ages, times of growth, etc.

Alex had a 2 month spell last year before he was even diagnosed where he was like a different kid...grades, behavior, everything was going fantastic and looking back on it, I think we were having a seizure free spell.

I don't see why the neurologist wouldn't want to put your little guy on and/or keep him on the anti-seizure medicine, especially with a known injury.

You could always get a second opinion...we are, sounds like everyone ends up doing that or switching neurologists until they find one they like.

Lots of luck and hugs
Cindy

 

[poohbear7]

It's been a rough week for my grandson. He was having a lot of headaches and behavour issues and other problems. Just brought him home from the emergency room. He woke up at 4am not well he couldn't explain what was wrong. The doctor thinks he was seizuring and may of been during the week.
He sees the neurologist tomorrow for the first time. The other doctors won't put him on anti seizure medication they want to leave it for the neuroligist.
In the mean time the poor guy has to go through all this. He had his first seizure that we know of back in Sept. It was a convulsive seizure so we knew what it was and he was hospitalized because it lasted too long. He was given anti seizure medication in the hospital.

 

[Snoopymom]

It's been a rough week for my grandson. He was having a lot of headaches and behavour issues and other problems. Just brought him home from the emergency room. He woke up at 4am not well he couldn't explain what was wrong. The doctor thinks he was seizuring and may of been during the week.
He sees the neurologist tomorrow for the first time. The other doctors won't put him on anti seizure medication they want to leave it for the neuroligist.
In the mean time the poor guy has to go through all this. He had his first seizure that we know of back in Sept. It was a convulsive seizure so we knew what it was and he was hospitalized because it lasted too long. He was given anti seizure medication in the hospital.

How did it go with the neurologist? I hope you got some answers.

Our appt went good. The doctor wasn't very talkative or helpful with explaining things, but he's scheduling a VEEG and an MRI, and we got Alex's trileptal increased. He's doing much better, but extremely sleepy, fell asleep in class yesterday and on the way to school this morning after 11 hours of sleep last night....guess there's always a trade off.

I hope everyone is doing well. We leave for Disney on Saturday. I'm pretty nervous, and going without ANY expectations...actually only have 2 1/2 days planned out which makes it so weird to go to any of the planning boards, but I'm sure you all understand.

Hugs!

 

[poohbear7]

How did it go with the neurologist? I hope you got some answers.

Our appt went good. The doctor wasn't very talkative or helpful with explaining things, but he's scheduling a VEEG and an MRI, and we got Alex's trileptal increased. He's doing much better, but extremely sleepy, fell asleep in class yesterday and on the way to school this morning after 11 hours of sleep last night....guess there's always a trade off.

I hope everyone is doing well. We leave for Disney on Saturday. I'm pretty nervous, and going without ANY expectations...actually only have 2 1/2 days planned out which makes it so weird to go to any of the planning boards, but I'm sure you all understand.

Hugs!

His appointment went well. The doctor gave my daughter a lot of information about his seizures. He has to go back in January. He has tempal lobe seizures and he was put on Tegretol. The doctor said that is why his behavour is all over the place. He is going to increase his Tegretol over a six week period. We should start to see changes in his behavour. He also is very tired and falls a sleep in class. The teacher and school has been very accommodating. We were told by the doctor not to wake him up or let him use an alarm clock. He said this could cause him to have a seizure. I'm learning alot about his condition. We are letting him wake up on his own then taking him to school.
I'm glad to hear your son is doing better. I'm sorry the doctor didn't give you more information. I quess we have to trade off the side effects of the medications. I know as they increse his Tegretol he will get sleepy. It's one of the few meds that work on ADHD children. It decreases the effectiveness of his ADHD med until they can increase it. They will adjust that med once his seizure med is the correct dose.

Have a great time at Disney. We are going for Christmas with a lot of unknowns. We are just going to go at my grandsons pace and making no plans.

Hugs

 

[alizesmom]

. We leave for Disney on Saturday. I'm pretty nervous, and going without ANY expectations...actually only have 2 1/2 days planned out which makes it so weird to go to any of the planning boards, but I'm sure you all understand.

Hugs!

We leave on Friday and will arrive on Sunday. Look for us. Short, heavy mom with very short brown hair. Slightly taller silver-haired (with a rear bald spot) dad, tall young nurse and gorgeous 4 yr old boy in wheelchair. Say hello. Karen

 

[Jennifer823]

Hey guys - I just wanted to chime on on the Trileptal. It really knocks you out until you get used to it. I couldn't get enough sleep the last time my dose was increased, but after about a week your body adjusts. I don't need any more sleep than normal now. Have a great time in Disney!!

 

[tinker girl]

hi to all of you, i came across this website which i thought was for epilepics, instead it was someone playing a sick joke, when i clicked on the link the word epilepsy in big letters appeared and surrounding it was very rapid flashing black and white lights which would probably cause most epileptics to have fits. the site to be aware of is

http://www.arcadecabin.com/play/epilepsy.html

pass it on

 

[tinker girl]

His appointment went well. The doctor gave my daughter a lot of information about his seizures. He has to go back in January. He has tempal lobe seizures and he was put on Tegretol. The doctor said that is why his behavour is all over the place. He is going to increase his Tegretol over a six week period. We should start to see changes in his behavour. He also is very tired and falls a sleep in class. The teacher and school has been very accommodating. We were told by the doctor not to wake him up or let him use an alarm clock. He said this could cause him to have a seizure. I'm learning alot about his condition. We are letting him wake up on his own then taking him to school.
I'm glad to hear your son is doing better. I'm sorry the doctor didn't give you more information. I quess we have to trade off the side effects of the medications. I know as they increse his Tegretol he will get sleepy. It's one of the few meds that work on ADHD children. It decreases the effectiveness of his ADHD med until they can increase it. They will adjust that med once his seizure med is the correct dose.

Have a great time at Disney. We are going for Christmas with a lot of unknowns. We are just going to go at my grandsons pace and making no plans.

Hugs

ds has been on that since the age of three. It has worked well. It will make him sleepy in the start but it will get better. It is so important that he do rest.
Let me know how he is doing.

 

[poohbear7]

ds has been on that since the age of three. It has worked well. It will make him sleepy in the start but it will get better. It is so important that he do rest.
Let me know how he is doing.

Thank you for the information it's nice to know what to expect. We are letting him get up in the morning on his own usually around 9am then we take him to school. He seems to be resting a lot.

 

[Snoopymom]

We leave on Friday and will arrive on Sunday. Look for us. Short, heavy mom with very short brown hair. Slightly taller silver-haired (with a rear bald spot) dad, tall young nurse and gorgeous 4 yr old boy in wheelchair. Say hello. Karen

I will! There's going to be 6 adults and 5 kids. Here are 4 of them, Alex is on the right. He's adopted so we don't look like him DH has brown hair and beard. I have brown hair and we're short and "stocky" as dh says. We'll be at MGM on Tuesday, Cape May for breakfast on Monday morning and Downtown Disney on Friday, dinner at the Rainforest, Grand Floridian for the Mary Poppins breakfast on Thursday morning. Have a great time!

 

[Snoopymom]

His appointment went well. The doctor gave my daughter a lot of information about his seizures. He has to go back in January. He has tempal lobe seizures and he was put on Tegretol. The doctor said that is why his behavour is all over the place. He is going to increase his Tegretol over a six week period. We should start to see changes in his behavour. He also is very tired and falls a sleep in class. The teacher and school has been very accommodating. We were told by the doctor not to wake him up or let him use an alarm clock. He said this could cause him to have a seizure. I'm learning alot about his condition. We are letting him wake up on his own then taking him to school.
I'm glad to hear your son is doing better. I'm sorry the doctor didn't give you more information. I quess we have to trade off the side effects of the medications. I know as they increse his Tegretol he will get sleepy. It's one of the few meds that work on ADHD children. It decreases the effectiveness of his ADHD med until they can increase it. They will adjust that med once his seizure med is the correct dose.

Have a great time at Disney. We are going for Christmas with a lot of unknowns. We are just going to go at my grandsons pace and making no plans.

Hugs

I'm so glad to hear it. Thanks for sharing all the info. I made yet another appt with a behavior/neurological center called the Marcus Institue. I couldn't beleive I got one for only two weeks out. I hope they can help us figure out what is psych and what is neuro and get Alex on the right meds, dose, etc.

I'll let you all know how our trip goes.

Oh, and I just have to say your daughter is so lucky to have you!
Hugs,
Cindy