Mom of 7yr old recently diagnosed with complex partial seizures

[Sarah'sMom]

So, my journey began when one day my 7 yr old stared off into space and with a very monotone voice asked her 10 yr old brother, "Where's your Dad?". My husband was deployed to Afghanistan at the time, and our daughter was completely aware of this fact. We just kind of laughed it off and told her to stop fooling around. She then experienced what I now know are the post ectal (sp?) effects of nausea, fatigue, and headache. I called her pediatrician immediately and told him of this "episode". We were referred for a MRI and CT, both of which were normal. After the referral was received, we went in for an EEG and then an initial consultation. The Dr reviewed the EEG (for all of about a second) and immediately diagnosed her with complex partials. She started Keppra 2.8ml bid and we were off. I have not observed anymore "episodes", but my child has completely changed. She has lost all interest in school, has become very angry and agitated and is extremely impulsive. We tried adding B6, and it hasn't made a bit of difference.

Has anyone else experienced these side effects, and is there a light at the end of the tunnel? Help!

 

[Nakamova]

I think kids are more susceptible than adults to the side effects of the meds, and Keppra is known for making people very moody. It's too bad the B6 didn't help, although it's worth taking a B-complex vitamin anyway. I would contact your doctor about possibly lowering the dose and/or trying a different med for your daughter. The medication merry-go-round is no fun, but you and your daughter shouldn't have to endure the crankiness.

There's also a chance that making alterations in your daughter's diet could help in either lowering the dosage or in going without meds altogether. RobinN has particular experience with that -- you can search the site for her posts, and for information about diet in general. Neurofeedback is another route to consider.

Best,
Nakamova

 

[Meetz1064]

I have

to agree with Nakamova's recommendations. It probably is the Keppra causing the problem, and while the B6 normally does the job, for some people, it doesn't.

And, I also agree, the medication merry-go-round isn't always fun, either---BUT, in the long run, can definitely be worth it. Talk to her doctor some more, and start keeping a journal. I have a list of things to keep in a journal, if you would like them. Just let me know.

BTW, welcome to CWE. I don't think we've met yet.

Take care,

Meetz
:rock:

 

[Marleneemm]

Sarah's Mom:
First,let me introduce myself. My name's Marlene~I've had Epilepsy since I was 6 years
of age. Your daughter's story sounds very much like mine.
I suffered from "absence seizures,was a poor student"the only reason I was diagnosed
was my dad was watching me when I almost took my left eye out on the corner of a
desk~That incident landed me in my doctor's office and then to my first neurologist.
My first EEG was "normal" it showed I had "petitMAL"
That began a long period of tryong out the then medications for Epilepsy.
I ended up in Mount Siani in New York with drug poisioning~and my second neurologist.
Who led me to my third one who put me on and experimental drug called Tegretol in 1969
When I had my first GrandMAL at the age of 15.
I was with this doctor till he retired in 1977.

I'm with my latest neurologist since 1986~and I'm also GrandMAL seizure free for the
past 23+ years.

So I want you to see that there is hope~and light at the end of the tunnel.
You have to find the right medication and the right doctor to help with Sarah.

 

[NArt]

hi, my name is zontonnia welcome to the web site, Ive had siezures since i poped out and one thing Ive noticed is that places like school or crowed areas or just places that your daughter finds that her mind doesnt like, mainly crowed or unpleasent areas. a diet journal and try music some smooth music let her pick. Do keep a watch on her though, siezures come out of no where even when the meds have just been taken.

try not to make it seem like your one of the doctors though, i think thats what makes people feel like the siezures have taken over thier life, when even family sound like the doc.

 

[NArt]

Also about the crowed areas, its places as schools because it does not allow the mind to think freely, its a place the mind realizes as being controlled. Your daughter may start to wonder off in her own world, its not that something is wrong its her mind thinking freely , she will need to learn to controll it or it could lead to a episode

 

[Marleneemm]

NoMedArt:
I was on Valium,Dexedrine and Tegretol when I was in highschool.
I can't stand the way Valium makes me feel~I'm supposed to take it,but I "weaned myself off of it years ago" Haven't had dexedrine since 1977,once my then doctor stopped it "cold turkey I've gained alot of weight~but since June of this year I'm on a
wonderful water pill that I take twice daily and am losing alot of weight!!!
Never experienced some of the symptoms that you described above~just "stared off into
space for afew seconds" when I was in grade school.
Since 1969 and my first GrandMAL I've been on Tegretol~which has been a god send.
My seizures are under control.
I won't even ever consider having "lap band weight loss surgery,that was suggested to
me by my regular doctor & my BIL" I told them both that I won't go and screw up 23+
years of not having a GrandMAL seizure to wear a size 4 dress"!!! It's not worth it!!!
Too many complications could happen~someone who I know and who had surgery is now
DEAD from the surgery!!!! I don't need the complications or the possibility of having
seizures again .

 

[NArt]

NoMedArt:
I was on Valium,Dexedrine and Tegretol when I was in highschool.
I can't stand the way Valium makes me feel~I'm supposed to take it,but I "weaned myself off of it years ago" Haven't had dexedrine since 1977,once my then doctor stopped it "cold turkey I've gained alot of weight~but since June of this year I'm on a
wonderful water pill that I take twice daily and am losing alot of weight!!!
Never experienced some of the symptoms that you described above~just "stared off into
space for afew seconds" when I was in grade school.
Since 1969 and my first GrandMAL I've been on Tegretol~which has been a god send.
My seizures are under control.
I won't even ever consider having "lap band weight loss surgery,that was suggested to
me by my regular doctor & my BIL" I told them both that I won't go and screw up 23+
years of not having a GrandMAL seizure to wear a size 4 dress"!!! It's not worth it!!!
Too many complications could happen~someone who I know and who had surgery is now
DEAD from the surgery!!!! I don't need the complications or the possibility of having
seizures again .

Im not to sure what you mean by the last part, and what i mean is are you saying im wrong about something or just stating your opinion?
I understand what your saying.
I hadnt gained wieght or anything from any meds, except it made the siezures want to happen or made the headache worse. I know it was trial and error, they were running out of options my last was to run a set of wires from a device to into my skin at the back of my shoulder up my neck and either ontop my skull or ontop my brain itself.
The device was a button i could use and at the end of the wires were pads that sent an electric shock that was suppost to stop me from going into a siezure.
I didnt like the idea with the surgery and all.

And to the post that i posted above about what you shouldnt worrie about please consider meds and consult a doctor well a nurologist first.

A child may not have or isnt strong enough to control the mind yet, nor understand it.

 

[NArt]

and then again marlen im not sure if your asking me something, i read what you left twice ill read it again though

 

[NArt]

ok well this well be the last response to that then- my symptoms were i would get a headache, but something would have to spark it. Usaully it would be when my mom would leave and i wanted her, when i was like 3 till 7 or 8. Or my sisters or step father would do something that i wish not to speak of.
But -

that something had to spark it and those are examples i would get the headache and then start to just scream well at that time i didnt understand it so i would cry and scream and just burn till i couldnt no more.

Later- in my teens it was stress or depression well my lessons and teachings of relations or understanding a female.

but i wouldnt get the headache- in my teens i would feel wired my body would tingle my face would feel like i cant explain just wierd, id get a wierd taste see white dots moving around sometimes i still see them and i see ones that are dots but when they move they look like they are distorting the area around it, spining towards its direction.

oh lol this is the venting huh lol :banana:

 

[Marleneemm]

NomedArt:
I was asking you what drugs you're taking for Epilepsy.
I'm on Tegretol since 1969.
I don't want to have weight loss surgery due to the fact that I'm afraid of "Screwing up
my track record of not having a GrandMAL seizure for 23 years".
To me that's more important than wearing a size 4 dress!!!
When I was on Dexedrine back in the 1960's I was around 155lbs.
Dexedrine was/is used as a weight loss drug. Can't take it due to high blood pressure.

 

[Marleneemm]

NomedArt:
I hear you about headaches.
I've gotten Migranines since I was 6.
They started right on the bridge of my nose and as I got older they spread all over my
head/face~Been throught the preverbial "Drug store of medications" to stop the pain!
Even tried some OTC pain meds~Regular asprin didn't work,same thing for Anacin,Bufferin,Excedrine and what ever was on the market back then.

Have taken Darvon,Darvocet,Percodan,Fiornal w/codine,Hydrocodine,Tylenol 3:
Am presently on Treximet or Vocodine.

when I get a really bad headache I tend to head to my bed and grab my sunglasses
and put them on and sleep!

 

[NArt]

NomedArt:
I was asking you what drugs you're taking for Epilepsy.
I'm on Tegretol since 1969.
I don't want to have weight loss surgery due to the fact that I'm afraid of "Screwing up
my track record of not having a GrandMAL seizure for 23 years".
To me that's more important than wearing a size 4 dress!!!
When I was on Dexedrine back in the 1960's I was around 155lbs.
Dexedrine was/is used as a weight loss drug. Can't take it due to high blood pressure.

well i smoke marijuana also i watch alot of what i eat, i try to stick to fruits vegetables and fish- some wheats. also i have looked into information about self consiousness. I took what i got from it and study mylife myself, such has meanings to the heart and brain.

My art is one also, it is a way for my mind to speak and release some stress or what ever it is its doing, i tend to let it do has it please with in my art.

they are my drugs, also i have an organization called ATNEGAM, NomedArt is part of it.

I would tell you more but then itll be like a book on this qoute

and about the marijuana, i do stick to sativia strands. They are for mind highs. there is another strand of it, i forget the name but it give you a body high. i tried both to see where and which i thought needed. I stay to sativias now though. Im not trying to say every one go and try marijuano either. There are medications that help some people

 

[NArt]

NomedArt:
I hear you about headaches.
I've gotten Migranines since I was 6.
They started right on the bridge of my nose and as I got older they spread all over my
head/face~Been throught the preverbial "Drug store of medications" to stop the pain!
Even tried some OTC pain meds~Regular asprin didn't work,same thing for Anacin,Bufferin,Excedrine and what ever was on the market back then.

Have taken Darvon,Darvocet,Percodan,Fiornal w/codine,Hydrocodine,Tylenol 3:
Am presently on Treximet or Vocodine.

when I get a really bad headache I tend to head to my bed and grab my sunglasses
and put them on and sleep!

yea i tend to sleep when i use mine too. I use to pass out after having an uncontrolled one- they wear the body out, the headaches are just the start, i think they hurt because they need that kick to spark
I went through my drug store meds too, beer, 211 still reserve- oxicottons x2 stacks- loratabes blue pills. and i even use to cut onmyself telling myself it was to bleed out the bad blood.

 

[NArt]

also i used to down about 12 to 20- something pills of the tylenol pm, i would down any fist full of the knock of sleep aids, i use to drink them down with the beer, yup and it got to the point to where i was taking 15 in the morning and then about 10 or 12 at night trying to get that feeling of fighting either the sleep or death itself. also do not try to controll your siezures. I ended up in the hospital with a tube down your throat and one down each nostral. i did it and was revived twice then left on life support for a whole day, the feeling after that wasnt nothing great either. but remeber i said I ended up there you may not be so lucky. besides you cant controll them

 

[NArt]

also do not try to controll your siezures. I ended up in the hospital with a tube down your throat and one down each nostral. i did it and was revived twice then left on life support for a whole day, the feeling after that wasnt nothing great either. but remeber i said I ended up there you may not be so lucky. besides you cant controll them

I say this because i say "controlled siezure" alot