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Medical Forum / Diseases and Disorders / Epilepsy / December 2007

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daughter has seizures

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dagmar - 25 Aug 2007 19:57 GMT
My daughter has been having seizures for about 15 months now. She almost
always has them on a daily basis. She has had several EEG's, 2 MRI's and 1
VEEG. Everything always comes back normal except on the VEEG she had one
spell but that was rules a psychogenic seizures. The only problem with that
was that she couldn't speak after the seizures and the neurologist couldn't
explain that with a psychogenic seizure. We have been told that she may have
psychogenic seizures but they cannot rule out epileptic ones.
I have been reading about Frontal Lobe Seizures and to me it sounds like she
might have those. Her seizures are very different at times. Sometimes she
just stares and keeps doing the same thing over and over again (automatism?)
like touching the same finger or rubbing her eye. Or she just passes out in
the middle of a sentence then comes to and continues her sentence.
She is now on 100 mg of Topomax (could be taking up to 200 mg but the side
effects are not worth it, she is totally out of it with 125 mg) and it seems
that the meds are helping but ... she now passes out and then when she comes
to she acts and talks like a 4-year old. She is able to give you answers and
she can do things like eat, drink but as a little girl not the 16-year old
she really is. These episodes can last a few minutes to 1/2 hour or even
longer. She is also bi-lingual (english and german) but she can only speak
and understand english when she has this kind of seizure/spell. Most of the
time she takes a nap and then after the nap she is ok. It also happens just
before she goes to sleep at night and during the night if she wakes up. She
also has some episodes where her body jerks.
She has been seen by 3 different psychologist and they all see no reason for
psychogenic seizures but she is seeing a psychologist now to see if that will
help.
I am looking for anybodys help with this. Does anybody have spells/seizures
like that? We are going to see her neuro on Wednesday again but I just don't
know what to do anymore. She has been a real trooper eventhough she can't go
to school and hang out with her friends without us being there. The whole
family is watching her like a hawk :-)
Thanks for your help!!!! Dagmar
Sofia - 26 Aug 2007 00:30 GMT
> alt.support.epilepsy
> My daughter has been having seizures for about 15 months now. She
[quoted text clipped - 5 lines]
> We have been told that she may have psychogenic seizures but they
> cannot rule out epileptic ones.

I could be corrected by somebody else in the newsgroup, but I could
swear epileptic and psychogenic seizures are the same thing just
different types of epileptic seizures?

It's just that most of your daughter's symptoms sound very familiar to
me when I was a kid and my paediatric told me I had epilepsy - the
absences, the seizures several per week, and I was also being far too
doped up with medication to concentrate...so I fell asleep very easily
during the day, like your daughter!

Sofie
Signature

Please visit my deviantART page: http://sofen.deviantart.com/

dagmar - 26 Aug 2007 09:37 GMT
Thank you for your info.

The way I understand it psychogenic seizures are of a psychological problem
and epileptic ones are of a electrical discharge in the brain. Psychogenic
seizures don't show up on a EEG. I really don't care if they are one or the
other, I just want to help my daughter in finding the right treatment for her.

Again, thanks for your help. Dagmar

>> alt.support.epilepsy
>> My daughter has been having seizures for about 15 months now. She
[quoted text clipped - 13 lines]
>
>Sofie
G. - 26 Aug 2007 15:16 GMT
> My daughter has been having seizures for about 15 months now. She almost
> always has them on a daily basis. She has had several EEG's, 2 MRI's and 1
[quoted text clipped - 28 lines]
> family is watching her like a hawk :-)
> Thanks for your help!!!! Dagmar

If you are doing any searches have a look at Simple Partial seizures,
or Absence seizures (the latter are often part of the former?).
Usually an Absence we appear to 'drift away' but remain conscious
(upright) during the seizure.
  If a seizure Generalizes (spreads), some of us can lose
consciousness and fall down at that point.   If she's not collapsing
during or at the end, what is listed e.g. at http://efa.org  under
Absence seizures might describe what is happening.   I don't recall
what the difference is if someone has what they call a Petit Mal, so
you might want to have a look at that type too.
   I did a post several weeks ago that listed about 6 websites
related to Epilepsy, First Aid and general seizure information.   If
you don't see that older post on your list within this group, reply
here and I'll look it up and cut and paste it back for you.
   When we 'come out' of a seizure it is not unusual for us to act
strangely or not be aware of what we are doing or how we are talking
(like a child or other).   Some of those symptoms are described (I
think) within the U.S. Ep. foundation site (www above), or within the
First Aid for Seizures links I had included in older post described
above.
   Usually the Dr. will start an Anti Seizure med. on a low dose and
gradually increase it if they continue, until they get closer to full
control.  That seems to work better than starting with too high a
dose, then reducing it to what would be appropriate for her weight,
metabolism (rate it's purged) and age.    Keep us posted too on how
she makes out after a week or 2 on the medication.  Some people who
read the group infrequently are using that medication and they might
have comments to add when they see your post on how it worked for them
and what types of szrs. they were trying to control.     G./
dagmar - 27 Aug 2007 20:56 GMT
Thanks for the info.

Actually, she has been on Topomax for about 2 - 3 months. We went all the way
to 100 mg without a problem. At 125 mg she was spaced out for 3 - 4 hours a
day. So we went back down to 100 mg. She's seeing her Neuro on Wednesday,
we'll see what he suggests.
She definately has Absence seizures, where she just stares and doesn't
respond to anything. The other ones that she has quite often now are the one
where she passes out for a couple seconds, sometimes jerks a little and when
she comes back she talks like a toddler. And that can last for 1/2 hour or
longer. She also has another weird one where she passes out after she
urinates on the toilet. Neuro can't explaint hat one either but said that he
had heard of that one before but very rare. I am going to insist on having
another MRI done since her last one was in Sept of last year. She was thrown
off a horse in August of 2005 but nothing shows up on the MRI.

Again, thanks for the help and I keep you posted. Dagmar

>> My daughter has been having seizures for about 15 months now. She almost
>> always has them on a daily basis. She has had several EEG's, 2 MRI's and 1
[quoted text clipped - 31 lines]
>have comments to add when they see your post on how it worked for them
>and what types of szrs. they were trying to control.     G./
Sofia - 29 Aug 2007 01:02 GMT
> Again, thanks for the help and I keep you posted. Dagmar

Sorry but there doesn't seem to be any magic cure for epilepsy other
than surgery. Perhaps there's something here you may find a little
useful though - or perhaps not as the case may be, but it can't do you
any harm to take a look though...

http://www.epilepsy.org.uk/info/parents.html

Sofie
Signature

Please visit my deviantART page: http://sofen.deviantart.com/

J. T. Laurie - 13 Sep 2007 22:26 GMT
how old is she?
If she is old enough to have a menstrual cycle the topamax may make that
extremely irregular and painful and heavy. it does that with me. I'm shot
with 25mg and 900mg of gabapentin.
> My daughter has been having seizures for about 15 months now. She almost
> always has them on a daily basis. She has had several EEG's, 2 MRI's and 1
[quoted text clipped - 45 lines]
> family is watching her like a hawk :-)
> Thanks for your help!!!! Dagmar
Roman Bystrianyk - 24 Sep 2007 00:59 GMT
> My daughter has been having seizures for about 15 months now. She almost
> always has them on a daily basis. She has had several EEG's, 2 MRI's and 1
[quoted text clipped - 28 lines]
> family is watching her like a hawk :-)
> Thanks for your help!!!! Dagmar

This news story maybe of help to you.  Good luck and ahve a great day.

Roman

http://www.healthsentinel.com/org_news.php?id=111&title=Reversing+autism+and+sei
zures+%96+Jonathan%92s+story&event=org_news_print_list_item


Roman Bystrianyk, "Reversing autism and seizures - Jonathan's story",
Health Sentinel, November 20, 2006,

When Jonathan was four years old it was apparent that he wasn't quite
the way a four-year-old should be. He didn't focus and was not very
verbal. He often got angry and punched his own head and physically
attacked others. He didn't sing. He just didn't seem normal.

His parents, Denise and Jose, took their son to the pediatrician.
After several visits he was diagnosed with pervasive developmental
disorder (PDD) and more specifically with autism. PDD refers to a
group of disorders characterized by delays in the development of
socialization and communication skills.

After his diagnosis, a pediatric neurologist saw Jonathan and
performed and EEG. An EEG or electroencephalogram is a test to detect
abnormalities in the electrical activity of the brain. Although there
were no petit mal or grand mal seizures detected, as you would see in
epilepsy, there was clear evidence of brain seizures.

As a result of those tests he was taken to a psychiatrist who
prescribed Depakote, which is a medication used to control seizures
and convulsions. The Depakote was too strong for Jonathan - because he
would lose his balance and also "space out" - so he was switched to
Topamax, which he seemed to tolerate better. He was also prescribed
Strattera because of his violent outbursts.

In October of 2005, Denise happened across a radio program in New York
City on 91.5 FM WNYE. The program was the Gary Null show and that day
Dr. Null was reading a news story titled "Stopping epileptic seizures
using omega-3, vitamin E, diet and more". Denise found it very
interesting and exciting, and when she got home she found the article
on the Internet and read it.

Absorbing as much of the information as she could, she decided that
she wanted a change for her son. She found the scientific information
referenced in the article, "absolutely amazing", and she was
determined to try a natural approach. On her own she began giving her
son supplements that were discussed in the article. She started him on
1000 mg of omega-3, 400 IUs of vitamin E, 500 mg L-Carnosine, 500 mg L-
Glutamine, selenium, Vitamin C, zinc, and B-complex.

She made changes in his diet, eliminating dairy and wheat and all
processed food, which Jonathan frequently ate. "Now that I look back
at it he had an awful diet." She switched to all organic food and
began using filtered water. She also started reducing the amount of
Jonathan's medication.

Within two weeks Jonathan started showing some amazing changes. Denise
noticed improved eye contact and increased "clarity". He suddenly
became more focused and articulate. He had more patience playing games
and wasn't as angry. Jonathan also began singing, something that he
never really did before. Denise was happy and surprised, "He's
actually singing! Oh my God he's singing!"

Each week Jonathan improved. They got letters from school asking what
has changed at home because Jonathan was now doing "wonderful". He
became more focused and patient.

She went back to her pediatrician to let him know that she was trying
a natural approach and was reducing the medications Jonathan was
taking. "I was so sorry I did". The doctor became very angry and
yelled, "Your son needs to be on Ritalin. He needs to be on stronger
medication than he's already on what are you thinking about cutting
his medications in half?" Denise was stunned by the pediatrician's
belittling attack and didn't go back to see this pediatrician and
instead switched to a more understanding pediatrician.

In November they went to see Dr. Marty Feldman, who added a brain
supporting powder that Denise adds to soymilk to make a shake for
Jonathan for breakfast. He also recommended a product called Ultra
Clear to help detoxify, vitamin B-12, and increased the omega-3 fatty
acids.

In December, 2 months after the start of the protocol, she went back
to the pediatric neurologist that had done the original EEG on
Jonathan. She explained that she hadn't been given Jonathan all the
prescribed medication and that she felt he should be retested to see
if he is having any brain seizures. They performed the EEG again and
this time Jonathan had "no clinical evidence of seizures".

Denise asked the doctor, "So is there any reason for him to be on any
medications to control seizures?" The pediatric neurologist replied,
"No. He doesn't need them." The neurologist asked what she was doing
and Denise let her know of the protocol she had put Jonathan on. She
was very supportive, "Great! Keep doing what you're doing."

Denise made an appointment with a new pediatrician and informed him
that Jonathan was off all his original medications. The new
pediatrician made a suggestion that Jonathan get plenty of physical
exercise.

"He rides his bicycle and scooter weather permitting. In the winter
the family goes ice-skating twice a week. He often plays baseball with
his Dad and he does nightly yoga with the family. In school Jonathan
has Adaptive Physical education daily."

Today, a little over 1 year from the start of a journey, Jonathan is a
normal and happy boy. His behavior is excellent and he has even been
awarded "Student of the Week" numerous times in his class. "There are
no problems with his behavior. None. He doesn't hit other children -
he's very kind to them. He compliments his teachers. He's a model
student. Everybody in their family is shocked at the amazing changes."

For more information please contact Denise at j3ona@verizon.net or
Roman at rbystrianyk@healthsentinel.com

REFERENCE: Stopping epileptic seizures using omega-3, vitamin E, diet,
and more - http://www.healthsentinel.com/org_news.php?event=org_news_print_list_item&id=058
Craig and Cindy Camplin - 15 Dec 2007 02:04 GMT
I would try Keppra; I've tried everything and had an operation that messed
up my brain.  I used to teach college literature.  Be careful of doctors and
their recomendations.
> My daughter has been having seizures for about 15 months now. She almost
> always has them on a daily basis. She has had several EEG's, 2 MRI's and 1
[quoted text clipped - 45 lines]
> family is watching her like a hawk :-)
> Thanks for your help!!!! Dagmar
Chris Lesurf - 16 Dec 2007 18:22 GMT
A couple of things that might be worth considering:
       a) the seizures sound like minor ones - often called 'absences' -
and they do show up on EEGs.

       b) When I took Keppra it caused fluid retention. This meant that
all my joints were uncomfortable and I was even in line to have an
operation for carpal tunnel syndrome (in the wrist).
Chris

> I would try Keppra; I've tried everything and had an operation that messed
> up my brain.  I used to teach college literature.  Be careful of doctors and
> their recomendations.
> > My daughter has been having seizures for about 15 months now. She almost
> > always has them on a daily basis. She has had several EEG's, 2 MRI's and 1
> > VEEG. Everything always comes back normal except on the VEEG

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