Seizures

[Guest guest]

In a message dated 11/10/00 7:49:31 PM Pacific Standard Time,

egroups writes:

> I've had a few really bad days lately as Brook had 9 seizures Wednesday

> morning.

Marisa:

Prayers and hugs being sent your way for Brook......I know how you feel when

they are doing so well on a new med and then " crash " ......although

doesn't have seizures, my neighbor's daughter does....I know how frightening

they can be.

Take care,

[Guest guest]

Hi Lori,

I wish I has something helpful to report but the truth is hasn't been

" seizure free " for more than a couple of months since he was diagnosed. Was

Tommy on medication during the three years he didn't have seizures? My only

thought is that if he was, maybe he has outgrown the dose?

Terry

[Guest guest]

Hi Lori,

Brook had myoclonic and petit mal seizures starting when he was a baby

and we finally took him off of Depakote when he was almost 7 yrs old. Last

year in May after being seizure free for 3 years, when Brook was 10 yrs old,

he suddenly started having seizures again. His neurologist thinks they were

generalized petit mal seizures. We started him on Depakote and they went away

and then his neurologist wanted to switch him to Lamictal because it has less

side effects. So we switched, a process that took 3 months, and then last

November he started having myoclonic seizures again. We raised his dose of

Lamictal and the seizures went away again. His doctor doesn't know why he

started having seizures again but the good news is that most of the time

children do grow out of their seizures. I think it may have something to do

with hormones and adolescence coming on in Brook's case, but who knows.

It is really a very frightening experience for me when Brook is having

seizures and it brings back a lot of really bad memories from when he was a

baby. So I know how hard it can be dealing with epilepsy. His doctor didn't

think doing another EEG would be necessary. I am really grateful though that

his medication works so well for him. I hope you get Tommy's seizures under

control.

Marisa

Mom to Miles 14, Brook 11 and Gennie 3yrs

[Guest guest]

lori,

nice to hear from you!!! thanks for the prayers and concerns of

cameron...dr.capone's email is capone@... and the website is

www.kennedykrieger.org....sorry i don't have the phone numbers but i always

just email him...is easier and cheaper for me and i have it in writing if i

forgetsomething...lolol which is happening alotlately.... take care and good

luck with the eeg and seizure stuff....very very scary...prayers coming

your way too,,,,keep your head above the water..lmao mine is being an anchor

these days......leah

>From: " Lori Ali " <lali@...>

>Reply-

>< >

>Subject: seizures

>Date: Fri, 16 Mar 2001 09:53:53 -0500

>

>Hi,

>

>I haven't posted in awhile, but am always trying to keep up with reading

>the posts, prayers coming your way Leah for Cameron, I hope all goes well.

> , Tommy had to be weaned of his depakene for about a week and ahalf

>a few years ago, because of blood and liver problems.

>

>Now my big questions, has anyones child who has had a history of past

>seizures (Tommy had infanitle spasms, had any grand mal seizures years

>later) Tommy has been seizure free for 3 years and he has had 2 grand mal

>seizures in the last 6 months, we are schelded for an eeg in 3 weeks. let

>me know if this has happened to anyone???

>

>Also I would like to take Tommy to see Dr Capone, could anyone who has seen

>him give me some info on how to get an appt, what he will do and how to try

>to get insurance to pay for it.

>

>Thanks for all your help, hope everyone has a peaceful weekend!!!

>Lori mom to 11, Shayne 9 and Tommy 6 1/2 ds, autism, Crohns disease

>

>

>

[Guest guest]

:

The medication that made 's seizures worse is called Zonegran or

Zonisimide. Currently is on Phenobarb, Mysoline, Neurontin, Lamictal,

Prednisone, and Zonegran. has Lennox Gastaut Syndrome, a rare

progressive seizure disorder. has 7 different types of seizures.

She can have 100 -200 seizures a day on a bad day, on a good day as few as

20. We are currently looking into a device called the Vagus Nerve

Stimulator. Have you investigated it for yourself? She was on Depakote as a

baby, and she became liver toxic.

Are your seizures under control now? Does the Lamictal seem to be working

for you? I am not sure if the lamictal is working on at all. Its

hard to tell with so many meds involved. I KNOW the mysolone and the

neurontin and phenobarb work.

Were you recently diagnosed with seizures or have you had them a while if you

don't mind me asking?

Take care

Tina

Mike, 16 CVID, JRA, Asthma, Pan Sinusitis, GERD, GI Bleed, Depression and

very sick right now with a stomach virus.

[Guest guest]

:

The medication that made 's seizures worse is called Zonegran or

Zonisimide. Currently is on Phenobarb, Mysoline, Neurontin, Lamictal,

Prednisone, and Zonegran. has Lennox Gastaut Syndrome, a rare

progressive seizure disorder. has 7 different types of seizures.

She can have 100 -200 seizures a day on a bad day, on a good day as few as

20. We are currently looking into a device called the Vagus Nerve

Stimulator. Have you investigated it for yourself? She was on Depakote as a

baby, and she became liver toxic.

Are your seizures under control now? Does the Lamictal seem to be working

for you? I am not sure if the lamictal is working on at all. Its

hard to tell with so many meds involved. I KNOW the mysolone and the

neurontin and phenobarb work.

Were you recently diagnosed with seizures or have you had them a while if you

don't mind me asking?

Take care

Tina

Mike, 16 CVID, JRA, Asthma, Pan Sinusitis, GERD, GI Bleed, Depression and

very sick right now with a stomach virus.

[Guest guest]

Hi Tina,

My name is Sandi. My son has PID--it hasn't been narrowed down yet, but

his Ped and I both suspect IgA def. The reason I'm writing to you is because

I also have seizures. They are a result of a brain injury I received after

having Encephalitis. I just have one question, does also have a PID?

I have always had more seizures when I am sick, viral or bacterial, but

especially viral. Also, for me, stress is a huge issue--also difficult to

keep at low levels. I only take phenobarb, and it only controls the gran

mals. I am thankful to have my life back, however, so I put up with it's

side effects. Most other seizure meds make me sick, or I can't keep a level.

Dilantin always gets toxic, no matter how much I take. Everybody is

different, but for me, one large dose of a seizure med is better than smaller

doses of two or more different seizure meds. Combinations don't work for me.

I have one friend who takes four or five different seizure meds daily, and

that works for her.

I hope your family had a good Thanksgiving.

Sandi, Mom to , age 8, suspected IgA def., chronic sinusitis, ear

infections, severe allergies. Nine surgeries.

[Guest guest]

Hi Tina,

My name is Sandi. My son has PID--it hasn't been narrowed down yet, but

his Ped and I both suspect IgA def. The reason I'm writing to you is because

I also have seizures. They are a result of a brain injury I received after

having Encephalitis. I just have one question, does also have a PID?

I have always had more seizures when I am sick, viral or bacterial, but

especially viral. Also, for me, stress is a huge issue--also difficult to

keep at low levels. I only take phenobarb, and it only controls the gran

mals. I am thankful to have my life back, however, so I put up with it's

side effects. Most other seizure meds make me sick, or I can't keep a level.

Dilantin always gets toxic, no matter how much I take. Everybody is

different, but for me, one large dose of a seizure med is better than smaller

doses of two or more different seizure meds. Combinations don't work for me.

I have one friend who takes four or five different seizure meds daily, and

that works for her.

I hope your family had a good Thanksgiving.

Sandi, Mom to , age 8, suspected IgA def., chronic sinusitis, ear

infections, severe allergies. Nine surgeries.

[Guest guest]

,

I've heard of the vagus nerve implants. A young man from one of

Jamey's classes had one put in and it did control most of the

seizures.

Your right though, it's going to take some time to get used to it.

I'm going to look up your meds after I'm done here--but why do they

have you on two? Do they control different kinds of seizures?

Sincerely,

[Guest guest]

Hello ,

Yes I am on two meds due to having two kinds of seizures. The

unfortunate thing is that I've gained over 10 pounds, which I could use

anyway. The other unfortunate thing is that the meds have caused another

kind of seizure to start/ develop. I've never had this type until I started

the meds. Any info on the vagus implant would be appreciated.

Re: seizures

> ,

>

> I've heard of the vagus nerve implants. A young man from one of

> Jamey's classes had one put in and it did control most of the

> seizures.

>

> Your right though, it's going to take some time to get used to it.

>

> I'm going to look up your meds after I'm done here--but why do they

> have you on two? Do they control different kinds of seizures?

>

> Sincerely,

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

In a message dated 10/31/2002 9:06:19 AM Eastern Standard Time,

writes:

> Her eyes are slightly open and seem to roll back in her head? Do some

> children just sleep like that and nothing is wrong with them?

Hi ,

Yes, many children sleep like this and there is nothing wrong with them. I

highly doubt she is having a seizure because you would see some other

evidence of such, ie. muscle twitching, lip smaking or loss of bladder

control. In addition, since she does sleep with her eyes partially open (I

have two who do this as well) their eyes will roll up in lighter sleep stages

to " get away " from the light sources. If she were to be lying in a totally

dark room (but then you couldn't check this because it is dark LOL) her eyes

" probably " wouldn't be doing that. But since there was obviously some light

source seeing as you are able to clearly see her eyes, then her brain was

telling them to roll up a bit to avoid that light. Does any of that make

sense! LOL In otherwords, I wouldn't worry about it. :-) Hope this helps.

Oh, just wanted to also say, that Nettie's eyes sometimes even " roll around "

in her head when she is in REM sleep, very FREAKY!

Mommy to Annette 12 (Selective Antibody Deficiency-IGG 2 and 4, CP,

Developmental Delay, g-tube, HIV+, IVIG x 3 years), 7 (CVID, brain

tumor survivor, severe hearing loss, chronic sinus and ear infections,

asthma, seizure disorder, GERD, IVIG x 1 year) and Trayvon 3 (Ivemark

Syndrome, severe congenital heart defects, asplenia, situs inversus) All

wonderful!!!!!

<A HREF= " http://www.caringbridge.com/ny/my2angels/ " >Click here: CaringBridge -

my2angels</A>

[Guest guest]

HI Donna, My 19 year old son had his first seizure when he was in 8th grade. It was the only seizure we could actually see him have. He had the EEG and it came back positive for seizure activity so he's been on Depakote since that time. The type of seizures he's been diagnosed with is subclinical seizure disorder. I think that's a new name for petit mal seizures. I agree with you it is a very scary experience. It is common with autism and puberty though. Donna <DOCHS@...> wrote: Hello everyone, I wondered if anyone has a child who has seizures? My son is a nonverbal, lower functioning autistic young man who is 17 years old and just had a seizure for the first time a few days ago. It was a scary experience. Donna __________________________________________________

[Guest guest]

Hi Donna,

I'm sorry to hear that your son is having seizures.My son (9yrs) has epilepsy as

well.(diagnosed at 4yrs old)We tried many meds till we got it right which ended

up being a combination of 2(Klonopin and depakote) the first one we started out

on was Tegretol and that worked really well for a while till he built up a

tolerance to it.We probably tried about 6 different meds till we found what

we've been with for years.

Has your son had a 24hr EEG? How was it determined that he had a seizure? Oh

yeah,my son is limited verbally as well and yes very scary to watch them go

through a seizure.My son's seizures have been pretty much under control the past

year so hopefully this is a sign that they're going away.My son used to go right

to sleep after one.Well ...if you have any questions feel free to ask.

Stacey

From: Donna <DOCHS@...>

Date: Sun Jun 25 10:09:49 CDT 2006

autism

Subject: seizures

Hello everyone,  I wondered if anyone has a child who has seizures? My son is a

nonverbal, lower functioning autistic young man who is 17 years old and just had

a seizure for the first time a few days ago.  It was a scary experience. Donna

[Guest guest]

Thank you for the response, and Stacey. My son has only had the one

seizure so far. It was a grand mal. The only injury he had was from biting

his tongue. His pediatrician is sending us to a neurologist to let a

specialist make decisions about testing and medication. He said that they

are not so quick to put a person on seizure meds as they used to be. Even

drawing blood on my son requires him to be put out. Since the incident, I am

constantly checking on him. I think he wondering about what is wrong with

mom.

Donna

" Be kinder than necessary, for everyone you meet is fighting some kind of

battle. "

seizures

Hello everyone, I wondered if anyone has a child who has seizures? My son is

a nonverbal, lower functioning autistic young man who is 17 years old and

just had a seizure for the first time a few days ago. It was a scary

experience. Donna

[Guest guest]

Donna,

That sounds like a good plan to follow up with a neurologist.We did and she

ordered the 24hr ambulatory EEG..I strongly feel anything less than 24 hrs

cannot be conclusive we did a 30min and it showed nothing,the dr tried to tell

us if it didn't show on a short study it won't show on a long

study(ridiculous).My son needed to be sedated for the technician to put the

electrodes on his head.Once they were on and his head was wrapped up in gauze

(so he couldn't get to the connections)he did very well.

If you have any questions about the process feel free to ask..we've done it

3times.The interesting thing about seizures is that my son more than likely was

having them since infancy but they were so slight we didn't notice.I remember he

used to have what we thought were night terrors and he'd wake up

crying.Anyways,please keep us posted on things.

P.s. the downside to doing meds is that you do need to repeat blood draws to

determine the level of meds in his system and to check liver function and other

things.We used to have to hold my son down..but it had to be done because theres

no other way to tell what the levels are .

Stacey

From: Donna <DOCHS@...>

Date: Sun Jun 25 15:06:38 CDT 2006

autism

Subject: Re: seizures

Thank you for the response, and Stacey. My son has only had the one

seizure so far. It was a grand mal. The only injury he had was from biting

his tongue. His pediatrician is sending us to a neurologist to let a

specialist make decisions about testing and medication. He said that they

are not so quick to put a person on seizure meds as they used to be. Even

drawing blood on my son requires him to be put out. Since the incident, I am

constantly checking on him. I think he wondering about what is wrong with

mom.

Donna

" Be kinder than necessary, for everyone you meet is fighting some kind of

battle. "

seizures

Hello everyone, I wondered if anyone has a child who has seizures? My son is

a nonverbal, lower functioning autistic young man who is 17 years old and

just had a seizure for the first time a few days ago. It was a scary

experience. Donna

[Guest guest]

Stacey,

I am interested in your experience with your son's seizures. My son had 3 seizures last summer- I believe they were partial complex but they lasted 5- 10 minutes and he lost consciousness and slept for hours after. He had an EEG- it came back normal. He saw a neurologist and had a sedated EEG and it came back normal. As he has not had another seizure in 10 months, I haven't done anything more. The neurologist doubts he had a seizure but I am positive that's what they were. Is it unusual to have a normal EEG? even a normal sleep-deprived EEG with sedation?

Janet

Re: seizuresHi Donna,I'm sorry to hear that your son is having seizures.My son (9yrs) hasepilepsy as well.(diagnosed at 4yrs old)We tried many meds till we got itright which ended up being a combination of 2(Klonopin and depakote) thefirst one we started out on was Tegretol and that worked really well for awhile till he built up a tolerance to it.We probably tried about 6 differentmeds till we found what we've been with for years.Has your son had a 24hr EEG? How was it determined that he had a seizure? Ohyeah,my son is limited verbally as well and yes very scary to watch them gothrough a seizure.My son's seizures have been pretty much under control thepast year so hopefully this is a sign that they're going away.My son used togo right to sleep after one.Well ...if you have any questions feel free toask.StaceyFrom: Donna <DOCHS@....com>Date: Sun Jun 25 10:09:49 CDT 2006autism Subject: seizuresHello everyone, I wondered if anyone has a child who has seizures? My son isa nonverbal, lower functioning autistic young man who is 17 years old andjust had a seizure for the first time a few days ago. It was a scaryexperience. Donna

[Guest guest]

My cousin began having seizures when he was a teenager. It took two

years of tests before they showed up on a EEG .

R

[Guest guest]

My cousin began having seizures when he was a teenager. It took two

years of tests before they showed up on a EEG .

R

[Guest guest]

My cousin began having seizures when he was a teenager. It took two

years of tests before they showed up on a EEG .

R

[Guest guest]

My son suffered from febrile convulsions - they were grand mal type fits and went on for in excess of half an hour on 2 occaisions with the full fit the whole time. These were always fever related and he had 8 of them in total. All tests including EEG's came back showing no probs.

He was on medication because such long fits are dangerous but has now come of medication and has been seizure free for over 2 years now.

Re: seizuresHi Donna,I'm sorry to hear that your son is having seizures.My son (9yrs) hasepilepsy as well.(diagnosed at 4yrs old)We tried many meds till we got itright which ended up being a combination of 2(Klonopin and depakote) thefirst one we started out on was Tegretol and that worked really well for awhile till he built up a tolerance to it.We probably tried about 6 differentmeds till we found what we've been with for years.Has your son had a 24hr EEG? How was it determined that he had a seizure? Ohyeah,my son is limited verbally as well and yes very scary to watch them gothrough a seizure.My son's seizures have been pretty much under control thepast year so hopefully this is a sign that they're going away.My son used togo right to sleep after one.Well ...if you have any questions feel free toask.StaceyFrom: Donna <DOCHS@....com>Date: Sun Jun 25 10:09:49 CDT 2006autism Subject: seizuresHello everyone, I wondered if anyone has a child who has seizures? My son isa nonverbal, lower functioning autistic young man who is 17 years old andjust had a seizure for the first time a few days ago. It was a scaryexperience. Donna

[Guest guest]

My son suffered from febrile convulsions - they were grand mal type fits and went on for in excess of half an hour on 2 occaisions with the full fit the whole time. These were always fever related and he had 8 of them in total. All tests including EEG's came back showing no probs.

He was on medication because such long fits are dangerous but has now come of medication and has been seizure free for over 2 years now.

Re: seizuresHi Donna,I'm sorry to hear that your son is having seizures.My son (9yrs) hasepilepsy as well.(diagnosed at 4yrs old)We tried many meds till we got itright which ended up being a combination of 2(Klonopin and depakote) thefirst one we started out on was Tegretol and that worked really well for awhile till he built up a tolerance to it.We probably tried about 6 differentmeds till we found what we've been with for years.Has your son had a 24hr EEG? How was it determined that he had a seizure? Ohyeah,my son is limited verbally as well and yes very scary to watch them gothrough a seizure.My son's seizures have been pretty much under control thepast year so hopefully this is a sign that they're going away.My son used togo right to sleep after one.Well ...if you have any questions feel free toask.StaceyFrom: Donna <DOCHS@....com>Date: Sun Jun 25 10:09:49 CDT 2006autism Subject: seizuresHello everyone, I wondered if anyone has a child who has seizures? My son isa nonverbal, lower functioning autistic young man who is 17 years old andjust had a seizure for the first time a few days ago. It was a scaryexperience. Donna

[Guest guest]

My guy has just started with petite seizures. He had 3 grand mal febrile seizures back in 2001 and nothing till October of last year. In January of this year he was having these seizures at least once a month. He is 9 years old, but is showing signs of puberty. I have heard this may cause seizures, but not how long they will continue to occur. The seizure starts as a faint, or body goes slack, then rigid for only about 10 seconds, then he is pale and clammy, then usually rests for a bit. With the febrile seizures back in 2001, he slept for 6 to 8 hours after.

Beth NolanMabel's Labels Inc.1-800-30-MABEL1-905-320-4714http://www.nolan.mabel.ca

[Guest guest]

It sounds to me like you need to get your memories

straight and maybe on paper then talk to your family

MD who could refer you to a neurologist.

I know that when my son was younger, whatever he was

doing when the seizure hit, he kept on doing during

the seizure. For instance, if he was walking when the

seizure started, he would be oblivious to the world

around him, but he would keep walking. That was one

reason we had to restrict some of his activities.

I wish you luck in figuring out what is going on.

; )

Willow

--- ferret_kelly <ferret_kelly@...> wrote:

> I had seizures till I was 8 or 9 years old and my

> family and I thought

My Challenges:

Scoliosis, Radiation Injury to my Brain, Ministrokes, Memory Problems, Cluster

Migraine Headaches, Osteoporosis with Multiple Broken Bones, Fibromyalgia,

Chronic Pain and Fatigue, Depression, PTSD, Bipolar Type II Rapid Cycling,

Anxiety, Chronic Insomnia, Sleep Apnea, Spinal Stenosis, TMJ injury, Thyroid

Cancer X3, Skin Cancer, Loss of Salivary Glands due to Thyroid Radiation Tx,

Teeth Destruction with Loss of Salivary Glands, Obesity, Restless Leg Syndrome,

Alpha Wave Intrusion on Delta Sleep plus many other Sleep Anomalies,

vonWillebrand's disease (genetic bleeding disorder), Hypertension, High

Cholesterol and Triglycerides, Chronic Allergies, Asthma, Peripheral Neuropathy,

Chronic Gastritis, GERD, Adult ADD, Overactive Bladder, Chronic Nosebleeds

[Guest guest]

It sounds to me like you need to get your memories

straight and maybe on paper then talk to your family

MD who could refer you to a neurologist.

I know that when my son was younger, whatever he was

doing when the seizure hit, he kept on doing during

the seizure. For instance, if he was walking when the

seizure started, he would be oblivious to the world

around him, but he would keep walking. That was one

reason we had to restrict some of his activities.

I wish you luck in figuring out what is going on.

; )

Willow

--- ferret_kelly <ferret_kelly@...> wrote:

> I had seizures till I was 8 or 9 years old and my

> family and I thought

My Challenges:

Scoliosis, Radiation Injury to my Brain, Ministrokes, Memory Problems, Cluster

Migraine Headaches, Osteoporosis with Multiple Broken Bones, Fibromyalgia,

Chronic Pain and Fatigue, Depression, PTSD, Bipolar Type II Rapid Cycling,

Anxiety, Chronic Insomnia, Sleep Apnea, Spinal Stenosis, TMJ injury, Thyroid

Cancer X3, Skin Cancer, Loss of Salivary Glands due to Thyroid Radiation Tx,

Teeth Destruction with Loss of Salivary Glands, Obesity, Restless Leg Syndrome,

Alpha Wave Intrusion on Delta Sleep plus many other Sleep Anomalies,

vonWillebrand's disease (genetic bleeding disorder), Hypertension, High

Cholesterol and Triglycerides, Chronic Allergies, Asthma, Peripheral Neuropathy,

Chronic Gastritis, GERD, Adult ADD, Overactive Bladder, Chronic Nosebleeds

[Guest guest]

I don't know what zen is sorry. the doctors will have asked you if you

were giving him any medication. Just make sure that you tell them about

the zen and show them the bottle so they can look at the active ingredients

I'm very sorry about your son. Seizures are terrifying. I'm sure it is

nothing you have done

Sally

Rob wrote:

>

>>

> Hi

>

> Have just been through my sons second seizure in 24hrs and feel very

> helpless. The only change in his supplements in the last day has been

> the introduction of 200mg of zen, i can only wonder if this has had

> anything to do with it?

>

> He is back at the hospital where seizure meds are a likely

> recommendation from the drs but hope there is something else that can

> be taken than medicating him on drugs.

>

> Any thoughts appreciated.

>

> Kate

>

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