Does Anyone Have Any Information On Lks(v) Posted: 02-05-04 18:09pm
Please could someone take the trouble to
e-mail me if they know anything on lks(v)
or someone that has been diagnosed with
it!!!
Thanking you
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katiedee
New User, Becoming EHEALTHy
Joined: 25 Mar 2004 Posts: 11
Lks Posted: 03-26-04 11:57am
I just joined this site, so I know this
response is late. My son was thought to
have landau-kleffner syndrome after his
eeg revealed continuous spike and waves.
However, after a series of tests which
included memory, cognitive functioning,
language skills and so forth, he was not
diagnosed with it. With lks there is
language regression and autistic-like
behavior. There are many good web sites
on this syndrome if you haven't looked at
them already. Hope this helps.
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Lees
New User, Becoming EHEALTHy
Joined: 05 Feb 2004 Posts: 5 Location: Swansea
Lks(v) Posted: 03-26-04 18:07pm
Thanks for replying to my article, my
daughter has now been diagnosed with this
condition, however my local hospital won't
treat her, I have now had to inform the
papers of this, so they can get the health
service to look at it. Did your son have
a 24 hour eeg which involves him being
asleep? I wasn't able to get this test
in wales, so we paid private and it showed
abnormality in the sleep period and normal
while she was awake. Where are you
living? I have done extensive research
on this, including case studies from the
library. It can be cured!!! My
daughter's story was in the evening post
last night, can you obtain this, if so
have a read, because there is more to
come, in view of the fact they are not
willing to treat her, the doctors have
given me no option but to print this.
And this mimics autism, I do believe that
my daughter is not the only one that could
have this, so how many children are not
getting treatment?
Lees
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katiedee
New User, Becoming EHEALTHy
Joined: 25 Mar 2004 Posts: 11
Lks Posted: 03-26-04 21:56pm
I'm so sorry to hear of the lack of
cooperation from your doctors. I live
in the us, in texas and know of several
excellent epilepsy clinics and
institutions that could help you here, but
don't know if that is even a possibility
for you. The cleveland clinic in ohio
is the first I would recommend.
As for my son, he has had several eegs,
all which include a sleep stage. When
they thought he had lks, his spike and
wave pattern was near continuous,
particularly during sleep. However, he
had no loss of language skills or anything
that would indicate lks other than the
abnormal eeg. He's had three-day stays
in the epilepsy unit as well with
continuous eeg and video monitoring.
Based on the fact he remained verbally on
target for his age, as well as his other
functioning skills, lks was ruled out.
Is there a web site you could point me to
that might have the article you're
referring to? I would like to show
this to our neuro here and see if he can
offer any suggestions. My husband is
in contact with several key people at
baylor medical center here, another great
medical facility, and I will have him ask
as well. Please keep me posted. I
would love to help in any way that I can.
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Lees
New User, Becoming EHEALTHy
Joined: 05 Feb 2004 Posts: 5 Location: Swansea
Lks(v) Posted: 03-27-04 07:46am
Hi katiedee
the website to view my daughters article
is thisissouthwales.Co.Uk, the website for
lks is folks, however, I got my
information from typing in lks(v) and all
my child's symptoms, into a search engine,
what has your son been diagnosed with?
Because lks can mimic other conditions
such as pdd and aspergers. It would be
useless me explainig these conditions as
you are the child's mum and you would
indentify with the presentation of this,
as you know him best, you might surprise
yourself!! I would recommend a book for
you to read, be open minded, because as
you read it, you won't be able to put it
down, I couldn't, give it a go, it will
cost you £4.99, it is called crystal
children by author doreen virtue,
fabulous!!!!! Please keep in touch, I
would like to hear from you, maybe we can
tell each other the weird an bizarre
excuses for non treatment of syndromes or
lack of knowledge from doctors, you were
very lucky to have your son tested for
three days on a video telemetry, it cost
me £2,500 for 24 hours and in the nhs
hospital it was only done for an hour and
ten minutes and then they couldn't get it
right, they said it was normal.
Here's to making a difference to all
children!!!
E-mail me soon, hope you enjoy the book!!!
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katiedee
New User, Becoming EHEALTHy
Joined: 25 Mar 2004 Posts: 11
Lks Posted: 03-27-04 08:20am
To answer your question, my son was
diagnosed with epilepsy and tourettes.
We have seen many seizures that are the
classic complex partial ones and his
abnormal eegs show that he does have
seizure tendencies. Having said that, a
person can have a normal eeg, but yet
still have epilepsy. Initially, the
first neuro thought my son was just having
tics and ignored the abnormal eeg. We
sought a second opinion and that neuro did
the 3-day monitoring and at the end he
said that my son was havng hundreds of
seizures a day, based on the eeg. Later
on we saw a third neuro (due to insurance
change) and she did inpatient monitoring
as well and the only difference of opinion
was on the kind of seizures she thought he
was having. As time went on, the eeg got
worse to where they thought he had lks,
but he himself had not regressed in any
manner. I'm very familiar with aspergers
as he does show some of the
characteristics of it, but more so my
oldest son fits the profile as everything
described in aspergers describes my oldest
son.
It is very frustrating to be in your
situation with no help available. We've
dealt with two neuros who wouldn't listen
to our concerns, but that is another story
for another day - a very long one. The
neuro we have now is a blessing as he did
listen to us and my son has been
seizure-free for two years now, which is
why he's being weaned off his medication
at the moment. We will see what happens
after that. We've weaned him before, but
the seizures started up soon afterwards.
We're cautiously optimistic now. I will
look up that article you referred to and
send it to the neuro we use now to see
what feedback he can give us. Maybe he
knows of something or someone that can
help you in your area as I know traveling
out of the country would be most difficult
(it would be for me!). I'll keep you
posted and please keep in touch.
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Lees
New User, Becoming EHEALTHy
Joined: 05 Feb 2004 Posts: 5 Location: Swansea
Epilepsy Posted: 03-27-04 20:43pm
Hi katiedee
i am so sorry to hear that both your
children have problems, this must be a
tremendous strain on your life, I find it
very hard to fully enjoy my daughter, as
it is 50% observation and 50% enjoyment,
the resaon I feel this is because doctors
don't listen and I have to monitor
deterioration. You are correct about the
eeg, you can have fits, with a normal
eeg.
There are three presentations of lks,
1 acute loss of language,sometimes in
association with encephalophathy illness
and or seizures, with good recovery.
2 long slow deterioration of language,
which may be unresponsive to antiepileptic
drugs, and moderate or poor recovery
3 variable onset during which there may
be several episodes of language
fluctuation which, if responsive to
antiepeleptic drugs, may lead to good
recovery
how long after the seizures did your son
recieve antiepileptic drugs?
Has your son had an mri scan to check the
map of the brain?
Do you know which part of the brain has
the electrical activity?
The reason I did all this research was,
the doctors weren't making sense and kept
contradicting themselves over and over
again.
It must be hard work!! Looking after
your boys, I have only georgia and it this
proves difficult, I know you love them,
but you would probably do anything to get
them cured, the scientist can make babies
for childless couples, but not enough
research is done into the cause of
epilepsy, it is the funding (money speaks
volumes). I am pleased to hear, you are
weaning your son of medication, I will
probably need a few tips from you sooner
rather than later, I will pray for him.
Well, have to go now, I am going to my
local supermarket to collect signatures in
disagreement with the hospital for not
treating georgia's condition, this should
help georgia get her test and treatment.
The newspaper reporter for georgia's story
is the mayoress of swansea, so I do have
her in my corner and also the mayor, this
gives me great support and encouragement,
they are running a follow up story next
week, also itn news have been interested
in georgia's story. Give your boys a
kiss from me. Speak soon ( keep in
touch)
leissa
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katiedee
New User, Becoming EHEALTHy
Joined: 25 Mar 2004 Posts: 11
Epilepsy Posted: 03-28-04 07:21am
Hi:
to answer some of your questions, my son
was put on medication right away as soon
as the diagnosis of epilepsy was made.
The eeg has changed over the years and
initially showed the abnormality starting
in the occipital lobe. Later eegs showed
spike and waves all over, or generalized,
although he's had only complex partial
seizures. The events present themselves
as starting with a funny feeling in his
stomach, look of fear or looking lost,
mouth chewing and swallowing, staring and
not able to respond, sometimes drooling,
sometimes making odd movements (reaching
and grabbing the air, etc...) a then after
about a couple of minutes he comes out of
it and goes to sleep. So, he's always
been treated for generalized seizures,
rather than partial ones because of the
eeg. His last eeg done two weeks ago
showed a marked improvement and only
sporadic sharp waves during sleep. His
neuro felt since he'd been seizure free
for two years that we could wean him off
the meds and see how he does. We don't
know if the eeg improved because he's
outgrowing the seizures, or if the
medication is doing such a good job. Two
years ago we were told basically the same
thing and eight weeks after he'd been
weaned he had 13 seizures in one day, thus
ending up in the emergency room for
intervention. As far as his mris go,
they look okay and only indicated some
"normal variations", but i've always
questioned how normal they were.
My oldest son is 21, and he's come a long
way since adolescence. He's got a sharp
mind and near genius iq, but sadly lacks
social skills. I have two older
daughters as well and neither one of them
have exhibited any inappropriate social
skills or signs of seizures. It's funny
how different the boys are. But I don't
worry because I know god is helping me to
take good care of them.
I've tried several times to go to the web
site to read your daughter's article, but
I keep getting an error message saying
it's unavailable. I don't know if the
site is down temporarily or what, but I am
anxious to read about her. What
medication is she currently on? When did
you notice her language regression?
Exactly what are the doctors in
disagreement over?
I hope all goes well and you got the
signatures you needed at the supermarket.
Keep in touch!
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Lees
New User, Becoming EHEALTHy
Joined: 05 Feb 2004 Posts: 5 Location: Swansea
Lks Posted: 03-29-04 04:58am
Hi katiedee
only a short reply I am afraid, as I am
absolutely exhausted! I collected 316
signatures disagreeing with the decision
not to treat georgia's syndrome in my
local hospital, the doctors are saying
there are possible side effects to the
treatment, even though it is documented in
medical reports that this has cured
children, there are side effects with
everything, I should have been given the
choice to decide, they wouldn't have been
able to treat her with drugs if I weren't
willing. As for girls being ok, it is a
fact that most syndromes are mail
dominant, it would be worth trying to find
out what parts are normal in your son's
mri and what aren't, if anything would be
able to understand. Will pray for you,
have to go now, falling asleep. E-mail
you soon
