Sharon -
It sounds like your son and mine are very similar.  High functioning with mostly
receptive loss.  Thatchcer tested high on verbal expression.  Anyway, we are in
the process of getting an ADD diagnosis and meds are being discussed.  I read
about your three meds and wondered what you are on now ( for both LKS and ADD)
and how they are working for you?  Sounds like your son is doing well.

Thanks for all your insite on this site!
Becky

--- In LandauKleffnerSyndrome@yahoogroups.com, "Janice" <jansumuk@...> wrote:
>
>
> Thanks Sharon for helping me understand it better! It's interesting about the
mindset to lower the percentage - as although now he is lower than 50%, he still
experiences problems - again the school called today saying he was really
wobbly, and kept falling over,so I again have had to pick him up! It's good for
you to understand! I think the school are struggling with him.
>
> Jan
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@> wrote:
> >
> > Janice,
> > Here is the best way I understand ESES/CSWS and anybody including our
"non-existent support group neurologist" may feel free to correct me if I am
wrong. Here goes:
> >
> > The term ESES means "electrical status epilepticus in sleep" and is a
description of frequency.The CSWS "continuous spike waves in slow wave sleep" is
a description of the type of pattern of electrical discharges.
> >
> > In order to be ESES then CSWS must be present at least during 85% of sleep.
Different sources will give you different percentages. There has been a mindset
to lower the percentage in recent research and still be considered ESES.So, you
can have CSWS on EEG but not be considered ESES if the percentage is low of the
abnormal activity(i.e. spike wave activity). Then they usually further break it
down to let you know where the abnormal spike waves are occuring in the brain or
"foci"- central temporal lobe, parietal lobe etc.
> > Clear as mud?? Or, is that making sense?
> >
> > We use the term for "status epilepticus" for any person that presents for
seizures in the ER that we cannot get to stop seizing despite giving meds. This
term is not just used for LKS- it's just that in LKS the "status epilepticus"
occurs during sleep and they may be fine when they are awake and seizure free.
They may even be fine while asleep with no evidence of seizures unless ESES
rises to level that it causes seizure to occur.This could be very kid dependent-
everyone has a different "seizure threshold." LKS kids tend to have less
seizures as a group overall than other types of epilepsy, as well.
> >
> > I have never heard or read about an "LKS lesion." Certainly, a child could
have had a brain hemmorrhage that caused brain damage and later develop an
abnormal EEG or seizure disorder that mimics LKS pathology. Most research on LKS
report that MRI's are normal for these kids.
> >
> > My son has far greater receptive loss than expressive loss with his LKS
along with LKS behaviors (MRI negative) and I completely understand what you
mean about the frustration level because of expecting too much. My son is much
improved on meds but I SO remember the frustration he experienced in
Kindergarten and 1st grade during his "peak time" of receptive loss. My son
didn't understand either what was being asked of him although his speech was not
that bad. My son has also been dually diagnosed with CAPD- that may be worth
exploring for your son, as well. My son is undergoing auditory retraining right
now with Speech Therapist.
> >
> > No, you are not wrong to want improvemnt- keep trying to normalize the EEG
with meds and continue with schooling efforts.
> >
> > My son has attention, focusing and concentration issues like ADD (actually
part of LKS) and  we tried three different stimulant trials last spring
(Concerta, Focalin and Vyvance) and he had major meltdowns on all of them within
10 days of any med trialed at lowest doses available. Anxiety, not sleeping,
horrible OCD behavior, tics, dystonic reactions etc. Meds may be worth trying-
you will know within 2 weeks if it is the right thing or not and any reaction
goes away quickly within a day or two once you stop meds (they are very short
acting unlike AED's). My son had a great response and could focus and pay
attention which was the good part (early on) but he flipped out after 10 days
which was the bad and we were forced to stop. Trial med- works- great. If not-
back to where you started from.
> >
> > Please post away- that's what this site is for. Hope this helps with
understanding ESES and CSWS.
> >
> > Take Care,
> > Sharon
> >
> >
> >
> > --- In LandauKleffnerSyndrome@yahoogroups.com, "Janice" <jansumuk@> wrote:
> > >
> > > Hi,
> > >
> > > After a few days at Great Ormund Street Hospital, having a 24hr EEG, and
developmental check we have finally got the official diagnosis of LKS. We have
always known he has ESES/CSWS, but I do not really understand the difference
between them all? Dr said it is  'lesion LKS', meaning he has had a brain
haemorrhage that cause it.
> > >
> > > He is 4 1/2, speech at appropriate level ish(which is why I didn't know if
he could have LKS or not), however its his understanding of speech and other
skills, behaviours etc all similiar to that of LKS.
> > >
> > > The EEG said he is now down to under 50% in his sleep, is that good?
Although he still is not at his best. Am I wrong to want more improvement?
Enough so he doesn't need a day sleep, and learns and behaves even better like
when the ESES stopped before?
> > >
> > > They also said that because his speech is good, it often masks the fact he
can't understand or can't do things, and that school are probably expecting too
much of him, that's why he is getting so frustrated at the moment.
> > >
> > > I am pleased to have the Developmental check, as they have given us lots
of opinions about his schooling, and the fact he has a form of ADD, making it
difficult for him to concentrate. They said they can give him medicine for this,
but he is on so much already they don't want to add to it.
> > >
> > > I hope you don't mind me posting this, I just wanted to speak to someome
who understands!
> > >
> > > Thanks for listening
> > >
> > > Jan
> > >
> >
>

Hi there! Our son who just turned 5 had his first grand mal seizure a year ago
this month.  Anyways we live in the midwest, the doctors told us that no one can
help us here. They are referring us onto the Cleveland Institute. Has anyone
ever gone there? Also our son had a drop seizure a month ago, that made our son
agressive, and see things for almost a month afterwards. He couldnt remember how
to count to 10 or how to write the first letter of his name. He also had severe
hand tremors to the point he would drop his fork and spoon or anything on them.
His milk would be spilt like he didnt even see the cup beside him. Has anyone
ever had this happen to them? This week it seems like it has finally gotten
better. Has anyone ever had this form of regression and then recovered? Sorry
for all the questions, this is still so new for us.

Amy

Hi,

I wanted some more advice if possible! We have fought to get into Great Ormond
Street Hospital, we are happy there we have achieved quite a lot in being there
in the last month than we did our nearest Neurological centre.

However, we are going to see Dr Dulac Paris on Monday, do I tell them? I am
worried they will think I do not value there opinion and send me back to my
local Neurological centre?

Great Ormond Street are ringing me tomorrow - so if anyone can get back to me
beforehand I would really appreciate it.  Also, it would be benefical for me to
tell them, as Dr Dulac would like to see my son's latest EEG's, therefore, we
would need them from GOSH. GOSH have accepted that under 50% is fine, and to go
pulse dosing the Prednisolone, I want more improvement! Dr Dulac might agree
with me and suggest hydrocortisone or something else. I could say to them I am
going to Dr Dulac for information on hydrocortisone, as I have heard he is the
expert and are they happy with that? I am at the point I don't care, I just want
him as best as we can get him.

Thanks Janice

Thanks Sharon for helping me understand it better! It's interesting about the
mindset to lower the percentage - as although now he is lower than 50%, he still
experiences problems - again the school called today saying he was really
wobbly, and kept falling over,so I again have had to pick him up! It's good for
you to understand! I think the school are struggling with him.

Jan

--- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@...> wrote:
>
> Janice,
> Here is the best way I understand ESES/CSWS and anybody including our
"non-existent support group neurologist" may feel free to correct me if I am
wrong. Here goes:
>
> The term ESES means "electrical status epilepticus in sleep" and is a
description of frequency.The CSWS "continuous spike waves in slow wave sleep" is
a description of the type of pattern of electrical discharges.
>
> In order to be ESES then CSWS must be present at least during 85% of sleep.
Different sources will give you different percentages. There has been a mindset
to lower the percentage in recent research and still be considered ESES.So, you
can have CSWS on EEG but not be considered ESES if the percentage is low of the
abnormal activity(i.e. spike wave activity). Then they usually further break it
down to let you know where the abnormal spike waves are occuring in the brain or
"foci"- central temporal lobe, parietal lobe etc.
> Clear as mud?? Or, is that making sense?
>
> We use the term for "status epilepticus" for any person that presents for
seizures in the ER that we cannot get to stop seizing despite giving meds. This
term is not just used for LKS- it's just that in LKS the "status epilepticus"
occurs during sleep and they may be fine when they are awake and seizure free.
They may even be fine while asleep with no evidence of seizures unless ESES
rises to level that it causes seizure to occur.This could be very kid dependent-
everyone has a different "seizure threshold." LKS kids tend to have less
seizures as a group overall than other types of epilepsy, as well.
>
> I have never heard or read about an "LKS lesion." Certainly, a child could
have had a brain hemmorrhage that caused brain damage and later develop an
abnormal EEG or seizure disorder that mimics LKS pathology. Most research on LKS
report that MRI's are normal for these kids.
>
> My son has far greater receptive loss than expressive loss with his LKS along
with LKS behaviors (MRI negative) and I completely understand what you mean
about the frustration level because of expecting too much. My son is much
improved on meds but I SO remember the frustration he experienced in
Kindergarten and 1st grade during his "peak time" of receptive loss. My son
didn't understand either what was being asked of him although his speech was not
that bad. My son has also been dually diagnosed with CAPD- that may be worth
exploring for your son, as well. My son is undergoing auditory retraining right
now with Speech Therapist.
>
> No, you are not wrong to want improvemnt- keep trying to normalize the EEG
with meds and continue with schooling efforts.
>
> My son has attention, focusing and concentration issues like ADD (actually
part of LKS) and  we tried three different stimulant trials last spring
(Concerta, Focalin and Vyvance) and he had major meltdowns on all of them within
10 days of any med trialed at lowest doses available. Anxiety, not sleeping,
horrible OCD behavior, tics, dystonic reactions etc. Meds may be worth trying-
you will know within 2 weeks if it is the right thing or not and any reaction
goes away quickly within a day or two once you stop meds (they are very short
acting unlike AED's). My son had a great response and could focus and pay
attention which was the good part (early on) but he flipped out after 10 days
which was the bad and we were forced to stop. Trial med- works- great. If not-
back to where you started from.
>
> Please post away- that's what this site is for. Hope this helps with
understanding ESES and CSWS.
>
> Take Care,
> Sharon
>
>
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Janice" <jansumuk@> wrote:
> >
> > Hi,
> >
> > After a few days at Great Ormund Street Hospital, having a 24hr EEG, and
developmental check we have finally got the official diagnosis of LKS. We have
always known he has ESES/CSWS, but I do not really understand the difference
between them all? Dr said it is  'lesion LKS', meaning he has had a brain
haemorrhage that cause it.
> >
> > He is 4 1/2, speech at appropriate level ish(which is why I didn't know if
he could have LKS or not), however its his understanding of speech and other
skills, behaviours etc all similiar to that of LKS.
> >
> > The EEG said he is now down to under 50% in his sleep, is that good?
Although he still is not at his best. Am I wrong to want more improvement?
Enough so he doesn't need a day sleep, and learns and behaves even better like
when the ESES stopped before?
> >
> > They also said that because his speech is good, it often masks the fact he
can't understand or can't do things, and that school are probably expecting too
much of him, that's why he is getting so frustrated at the moment.
> >
> > I am pleased to have the Developmental check, as they have given us lots of
opinions about his schooling, and the fact he has a form of ADD, making it
difficult for him to concentrate. They said they can give him medicine for this,
but he is on so much already they don't want to add to it.
> >
> > I hope you don't mind me posting this, I just wanted to speak to someome who
understands!
> >
> > Thanks for listening
> >
> > Jan
> >
>

Gina,

I am so sorry for you and Sedona. From what I read these "drop attacks" are more common to LGS and very resistent to treatment with AED's. There is more info on the following website that gives some med options:

http://www.ilae-epilepsy.org/Visitors/Centre/ctf/atonic.cfm

Know Sedona has been on multiple meds in past and options are limited for her. This site does mention Lamictal (Lamotrigine) in combination with Valproic Acid (Depakote) as treatment  of choice for these type atonic drop attacks. Claims these attacks don't cause "damage" and main risk is injury from fall. Recommend helmets to protect head from falls and injury. Ketogenic diet is option also.

You should discuss increase/type of seizures with Neuro if you have not already done so. Hope there is something out there that will work for her.

Take Care,

Sharon

--- In LandauKleffnerSyndrome@yahoogroups.com, "Gina S." <donabug2001@...> wrote:
>
> Hello!
>  
> Sedona has been having these weird seizures. She stands and loses her balance and her head falls back. She goes through a status every two hours. We give her 2mg of ativan and she still has the same pattern. We were standing in line for 10 minutes and she had 6 seizures back to back. She was in the lunch line at school and she started to lose her balance, walk backwards and fall. Her nurse caught her and then her head fell back. When it was over she couldnt remember her name or where she was.
>  
> Today she started with the status at 11 and between 11 and 1 had over 15 seizures. Atonic seizures.
>  
> For some reason she has had an increase in seizures in the last few weeks. Not only more but more severe. She already had her first peroid two years ago and had percosious puberty since 5. So hormones are not the reason.
>  
> We are also out of drug options and we would like to try the Frisum but how to get her off the ativan safely. They told us that they would have to put her on Methadone to get her off the ativan. They lowered her ativan in the hosp for her eeg and she went into status with over 800 seizures a day. Mostly clinical and some subclinical. It was really scary.
>  
> SHe had her first grandmal this summer. That was scary since we were at camp in CA.
>  
> If anyone has any ideas please please please let me know.
>  
> God Bless,
>  
> Gina
> Mom to Sedona LKS, CFD, chILD, LGS
>
>
> "Life is not how you survive the storm , but how you dance in the rain"
> ~ unknown
>

Janice,
Here is the best way I understand ESES/CSWS and anybody including our
"non-existent support group neurologist" may feel free to correct me if I am
wrong. Here goes:

The term ESES means "electrical status epilepticus in sleep" and is a
description of frequency.The CSWS "continuous spike waves in slow wave sleep" is
a description of the type of pattern of electrical discharges.

In order to be ESES then CSWS must be present at least during 85% of sleep.
Different sources will give you different percentages. There has been a mindset
to lower the percentage in recent research and still be considered ESES.So, you
can have CSWS on EEG but not be considered ESES if the percentage is low of the
abnormal activity(i.e. spike wave activity). Then they usually further break it
down to let you know where the abnormal spike waves are occuring in the brain or
"foci"- central temporal lobe, parietal lobe etc.
Clear as mud?? Or, is that making sense?

We use the term for "status epilepticus" for any person that presents for
seizures in the ER that we cannot get to stop seizing despite giving meds. This
term is not just used for LKS- it's just that in LKS the "status epilepticus"
occurs during sleep and they may be fine when they are awake and seizure free.
They may even be fine while asleep with no evidence of seizures unless ESES
rises to level that it causes seizure to occur.This could be very kid dependent-
everyone has a different "seizure threshold." LKS kids tend to have less
seizures as a group overall than other types of epilepsy, as well.

I have never heard or read about an "LKS lesion." Certainly, a child could have
had a brain hemmorrhage that caused brain damage and later develop an abnormal
EEG or seizure disorder that mimics LKS pathology. Most research on LKS report
that MRI's are normal for these kids.

My son has far greater receptive loss than expressive loss with his LKS along
with LKS behaviors (MRI negative) and I completely understand what you mean
about the frustration level because of expecting too much. My son is much
improved on meds but I SO remember the frustration he experienced in
Kindergarten and 1st grade during his "peak time" of receptive loss. My son
didn't understand either what was being asked of him although his speech was not
that bad. My son has also been dually diagnosed with CAPD- that may be worth
exploring for your son, as well. My son is undergoing auditory retraining right
now with Speech Therapist.

No, you are not wrong to want improvemnt- keep trying to normalize the EEG with
meds and continue with schooling efforts.

My son has attention, focusing and concentration issues like ADD (actually part
of LKS) and  we tried three different stimulant trials last spring (Concerta,
Focalin and Vyvance) and he had major meltdowns on all of them within 10 days of
any med trialed at lowest doses available. Anxiety, not sleeping, horrible OCD
behavior, tics, dystonic reactions etc. Meds may be worth trying- you will know
within 2 weeks if it is the right thing or not and any reaction goes away
quickly within a day or two once you stop meds (they are very short acting
unlike AED's). My son had a great response and could focus and pay attention
which was the good part (early on) but he flipped out after 10 days which was
the bad and we were forced to stop. Trial med- works- great. If not- back to
where you started from.

Please post away- that's what this site is for. Hope this helps with
understanding ESES and CSWS.

Take Care,
Sharon



--- In LandauKleffnerSyndrome@yahoogroups.com, "Janice" <jansumuk@...> wrote:
>
> Hi,
>
> After a few days at Great Ormund Street Hospital, having a 24hr EEG, and
developmental check we have finally got the official diagnosis of LKS. We have
always known he has ESES/CSWS, but I do not really understand the difference
between them all? Dr said it is  'lesion LKS', meaning he has had a brain
haemorrhage that cause it.
>
> He is 4 1/2, speech at appropriate level ish(which is why I didn't know if he
could have LKS or not), however its his understanding of speech and other
skills, behaviours etc all similiar to that of LKS.
>
> The EEG said he is now down to under 50% in his sleep, is that good? Although
he still is not at his best. Am I wrong to want more improvement? Enough so he
doesn't need a day sleep, and learns and behaves even better like when the ESES
stopped before?
>
> They also said that because his speech is good, it often masks the fact he
can't understand or can't do things, and that school are probably expecting too
much of him, that's why he is getting so frustrated at the moment.
>
> I am pleased to have the Developmental check, as they have given us lots of
opinions about his schooling, and the fact he has a form of ADD, making it
difficult for him to concentrate. They said they can give him medicine for this,
but he is on so much already they don't want to add to it.
>
> I hope you don't mind me posting this, I just wanted to speak to someome who
understands!
>
> Thanks for listening
>
> Jan
>

Hi,

I agree with Sam on all issues.

Also, you mention 'he will have language problems', meaning he does not now?

I think you just don't know if or what the epilepsy could affect and how, the
right treatment could stop the epilepsy.  I think a good developmental team is
also important - so that he can get assessed to see at what level he is at.

Jan

Hi,

After a few days at Great Ormund Street Hospital, having a 24hr EEG, and
developmental check we have finally got the official diagnosis of LKS. We have
always known he has ESES/CSWS, but I do not really understand the difference
between them all? Dr said it is  'lesion LKS', meaning he has had a brain
haemorrhage that cause it.

He is 4 1/2, speech at appropriate level ish(which is why I didn't know if he
could have LKS or not), however its his understanding of speech and other
skills, behaviours etc all similiar to that of LKS.

The EEG said he is now down to under 50% in his sleep, is that good? Although he
still is not at his best. Am I wrong to want more improvement? Enough so he
doesn't need a day sleep, and learns and behaves even better like when the ESES
stopped before?

They also said that because his speech is good, it often masks the fact he can't
understand or can't do things, and that school are probably expecting too much
of him, that's why he is getting so frustrated at the moment.

I am pleased to have the Developmental check, as they have given us lots of
opinions about his schooling, and the fact he has a form of ADD, making it
difficult for him to concentrate. They said they can give him medicine for this,
but he is on so much already they don't want to add to it.

I hope you don't mind me posting this, I just wanted to speak to someome who
understands!

Thanks for listening

Jan

Hi,
Did your neuro offer any help, advice or treatment options?
LKS is rare, but can be treated. It is important to have a neuro who has
experience with LKS.
Left untreated, LKS can cause lifelong brain damage and complete language loss.
Treatment should be started sooner rather than later, to reduce the risk of
irreparable damage. I know how scary this sounds, but if your son starts
treatment soon, then he will have a chance of recovery.
What symptons does your son have? How old is he?
Whereabouts are you?
Have a read of this LKS booklet, it is a little long, but very informative.
http://www.friendsoflks.com/LKSInfo.pdf
I'm sure you will have a lot more questions, so come back and ask away.
Sam


--- In LandauKleffnerSyndrome@yahoogroups.com, "jsbpow" <jsbpow@...> wrote:
>
> My son just reciently had seizure tests done; MRI, sleep study, and 48 hour
EEG. His neurologist told us the results for all and mentioned LKS but she
didn't really say anything, just that it was rare and the child has would have
language problems. I looked it up and WOW. Could someone please help me  with
information about this syndrome.
>

My son just reciently had seizure tests done; MRI, sleep study, and 48 hour EEG.
His neurologist told us the results for all and mentioned LKS but she didn't
really say anything, just that it was rare and the child has would have language
problems. I looked it up and WOW. Could someone please help me  with information
about this syndrome.

Hi Becky,

From what I understand the main side affects are high blood pressure, bone
thining, lowered immune system, diabetes and increase in weight.

My son has been on them for 3 months, and his blood pressure and urine are
checked every week, and he has had no problems.  He has not increased in weight,
although his face and stomach are slightly bloated.

From what I understand if you do have side affects to the medicines there are
options  - e.g. lower the dose, pulse dose or hypertension medicines.

I will give my son flu/swine flu vaccinations, and I give him good food and
vitamins.

I do not like the risks/side affects, but you have to weigh up the pro's/con's
of going on it. It could potentially stop the ESES, which in turn means less
medicines etc for life, and better functioning.  I definately think it was a
good option to take for us. I didn't realise what a state he was in before,
until he started getting better (although not 100% better, probably 80%)

Good luck with whichever form of treatment is decided.

Jan

Cathy,

Just an observation- if your son is 15 he is probably about at or about through
puberty. Most of the info on LKS states that the majority of EEG abnormalities
abate with puberty. Although, not ALL LKS children will "outgrow" EEG
abnormalities at puberty. Many children may still be left with speech, working
memory, attention and/or academic difficulties even after EEG changes resolve
thought to be due to damage to temporal lobe or other foci in the brain due to
years of untreated ESES or CSWS.This unfortunately, is thought to be
irreversible once this occurs. Reason literature calls for prompt identification
of disease for treatment as close to initial regression as possible and for
normalization of EEG prior to puberty. Many of us are late to diagnosis due to
years of misdiagnosis.

We are in the same place- trying to normalize the EEG and behaviors trying to
beat the clock to puberty as he has been symptomatic for almost 5.5 years at 9.5
years old.High functioning but symptomatic, nonetheless.

You said your child was not "true LKS" but perhaps a variant. If he is still
having persistent EEG abnormalities at this age- it may be worth investigating
for other possibilities or causes and/or treatments with some of the newer
medications. An "abnormal EEG" is just that- "abnormal" whether it is tied to
any particular disease or not. Apparently, you feel it it is having some kind of
impact on his status if you are inquiring regarding docs, treatments etc.
Particularly, if you have evidence (recent EEG's)it is still abnormal at this
age.

Just an observation.

Sharon

--- In LandauKleffnerSyndrome@yahoogroups.com, cemmom@... wrote:
>
>
>
> Great, thanks for the info!!
>
>
>
>
> ----- Original Message -----
> From: "KristeenP" <kristeenp@...>
> To: LandauKleffnerSyndrome@yahoogroups.com
> Sent: Wednesday, November 11, 2009 9:10:24 AM GMT -06:00 US/Canada Central
> Subject: Re: [LandauKleffnerSyndrome] Re: New  need help. Seizures  lack of
language
>
>  
>
>
>
>
>
> I heard Dr. Michael Smith at Rush is the best LKS doctor. 
>
>
> In a message dated 11/10/09 11:41:58 Central Standard Time, cemmom@... writes:
>
>
>  
>
>
>
>
>
> Hi Martha -
>
>
>
> Thanks so much for the kind response. I feel awful that we have not pursued
treating the EEG on our son who is now 15 in ages. When he was first diagnosed
by Chez we tried depakote and steroids but he was tiny then. Over the years we
did try zonegran and aricept and a number of meds. Still we never tried lamictal
or trileptal and we will always wonder if the depakote might work now. We had a
lot of trouble getting it all in him and are not sure if we ever reached a
therapeutic level. I will try to find Kanner or an associate. Seems to me we saw
Heydemann years ago (he may have been UIC tho it is hard to recall) and he did
not want to treat the EEG at all. Thanks again!
>
>
>
> Cathy M.
>
>
>
>
> ----- Original Message -----
> From: "mrth_ryn" <msryan3@...>
> To: LandauKleffnerSyndrome@yahoogroups.com
> Sent: Sunday, November 8, 2009 8:15:58 PM GMT -06:00 US/Canada Central
> Subject: [LandauKleffnerSyndrome] Re: New  need help. Seizures  lack of
language
>
>  
>
>
>
>
> Cathy - We saw Dr. Kanner at RUSH but that was almost 5 yrs ago and he was
more of surgery consult. Check their website and see if they have anyone new
there. Dr. Kanner is awesome though, because he is a psychaiatrist and a
pediatric neurologist. He called our neuro in Cleveland and they together,
discussed Hannah. She was diagnosed LKS variant because she also had activity in
occipital and centrotemporal areas. She also was called variant because she lost
speech slowly over a period of time. She regained her speech on steroids but
still has a long way to go with academics. She is now 12 and has a clear EEG, we
are in the process of weaning her zonegran, keep your fingers crossed!!Good Luck
- Martha
>
> --- In LandauKleffnerSyndrome@yahoogroups.com , cemmom@ wrote:
> >
> >
> >
> > Hi all -
> >
> >
> >
> > Sorry to jump in but is there a particular neuro at Rush who is recommended?
Also, generally speaking, are neuros nowadays recognizing LKS variant? The
reason I ask is my son does not fit the criteria for true LKS but does have
subclinical seizures in the temporal and occipital lobes. It was speculated
years ago that he might have a variant of LKS (we saw Dr. Chez) and we treated
with depakote and steroids with no improvement. Well, depakote none and steroids
a small amount. Are they likely to take this seriously nowadays or are
they still saying yes a lot of these kids have abnormal EEGs but there is no
way to treat them and even if we do there is no guarantee they will improve.
Thanks for any insight.
> >
> >
> >
> > Cathy
> > ----- Original Message -----
> > From: "szmidford" <szmidford@>
> > To: LandauKleffnerSyndrome@yahoogroups.com
> > Sent: Friday, November 6, 2009 9:22:42 AM GMT -06:00 US/Canada Central
> > Subject: [LandauKleffnerSyndrome] Re: New  need help. Seizures  lack
of language
> >
> >  
> >
> >
> >
> >
> > I would try Rush in Chicago first. Chicago is not far from Indianapolis. If
your insurance doesn't cover out of state doctors you may have to pay out of
network charges or out of pocket, but then have Rush consult with your local
neurologist from there on. Other parents have reported (privately) some
difficulties with Dr. Franz, but Cincy Children's may be worth a try after Rush.
> >
> > Suzanne
> >
>

After about 3 weeks I called our doctor, left a msg.  He called back and told me
he had the preliminary info not the final report.  A month later I called back
and they had forgotten to give me the report.  Call

--- In LandauKleffnerSyndrome@yahoogroups.com, "slacker_15129" <slacker361@...>
wrote:
>
>
> How long does it take to get the results of a 24 hour eeg?
>
> right now I am looking at 3 weeks and the doctors hasnt even looked at my sons
eeg, is this normal from what you guys are seeing?
>
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Mia" <generalhysteria@> wrote:
> >
> > Sharon~
> >
> > I hope the EEG gives at least gives some good information.
> >
> > Mia.
> >
> > --- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@> wrote:
> > >
> > > Becky,
> > >
> > > We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb.
This was planned to be in conjuction with med change to Lamictal and wean from
Keppra but we had a few problems with Lamictal and will resume following EEG at
lower dose and slower titration schedule. Would like for it be 72 hours but
Neuro did not order it that way. This is also "baseline" EEG for new Neuro.
That's our story.
> > >
> > > Take care,
> > > Sharon
> > >
> > > --- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@> wrote:
> > > >
> > > > Hi again,
> > > >
> > > > I was wondering how often you all are repeating EEG's and if they are
only over-nighters now.  It's been a year for us.
> > > >
> > > > Thanks
> > > >
> > > > Becky
> > > >
> > > > ps, I know how subjective this is...just curious.
> > > >
> > >
> >
>

It seems that many of you are doing the steroid treatment.  Can you tell me
about the side effects?  We're not sure what our next step is.
Thanks
Becky

Our doc usually comes in the morning of the all night EEG and tells us what he
saw. Then a week or 2 later we get the offical report that is usually about the
same as what he told us or maybe a little different cause I think they have
someone go through every bit of it. I think 3 weeks is a little long to wait for
results. - Martha

--- In LandauKleffnerSyndrome@yahoogroups.com, "slacker_15129" <slacker361@...>
wrote:
>
>
> How long does it take to get the results of a 24 hour eeg?
>
> right now I am looking at 3 weeks and the doctors hasnt even looked at my sons
eeg, is this normal from what you guys are seeing?
>
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Mia" <generalhysteria@> wrote:
> >
> > Sharon~
> >
> > I hope the EEG gives at least gives some good information.
> >
> > Mia.
> >
> > --- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@> wrote:
> > >
> > > Becky,
> > >
> > > We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb.
This was planned to be in conjuction with med change to Lamictal and wean from
Keppra but we had a few problems with Lamictal and will resume following EEG at
lower dose and slower titration schedule. Would like for it be 72 hours but
Neuro did not order it that way. This is also "baseline" EEG for new Neuro.
That's our story.
> > >
> > > Take care,
> > > Sharon
> > >
> > > --- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@> wrote:
> > > >
> > > > Hi again,
> > > >
> > > > I was wondering how often you all are repeating EEG's and if they are
only over-nighters now.  It's been a year for us.
> > > >
> > > > Thanks
> > > >
> > > > Becky
> > > >
> > > > ps, I know how subjective this is...just curious.
> > > >
> > >
> >
>

Hi Becky,
We had an EEG every month for about 3 years! Important during the wean, and for
piece of mind when he was on a maintenance dose. Then, after the steroids, they
were as required by us, usually every 3 months or so.
Sam

--- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@...> wrote:
>
> Hi again,
>
> I was wondering how often you all are repeating EEG's and if they are only
over-nighters now.  It's been a year for us.
>
> Thanks
>
> Becky
>
> ps, I know how subjective this is...just curious.
>

We would also usually get the results the following day after the EEG.
Sam


--- In LandauKleffnerSyndrome@yahoogroups.com, "slacker_15129" <slacker361@...>
wrote:
>
>
> How long does it take to get the results of a 24 hour eeg?
>
> right now I am looking at 3 weeks and the doctors hasnt even looked at my sons
eeg, is this normal from what you guys are seeing?
>
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Mia" <generalhysteria@> wrote:
> >
> > Sharon~
> >
> > I hope the EEG gives at least gives some good information.
> >
> > Mia.
> >
> > --- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@> wrote:
> > >
> > > Becky,
> > >
> > > We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb.
This was planned to be in conjuction with med change to Lamictal and wean from
Keppra but we had a few problems with Lamictal and will resume following EEG at
lower dose and slower titration schedule. Would like for it be 72 hours but
Neuro did not order it that way. This is also "baseline" EEG for new Neuro.
That's our story.
> > >
> > > Take care,
> > > Sharon
> > >
> > > --- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@> wrote:
> > > >
> > > > Hi again,
> > > >
> > > > I was wondering how often you all are repeating EEG's and if they are
only over-nighters now.  It's been a year for us.
> > > >
> > > > Thanks
> > > >
> > > > Becky
> > > >
> > > > ps, I know how subjective this is...just curious.
> > > >
> > >
> >
>

15129,
Short answer - No! I have always had results quickly. Thomas had his taken off
this am at 8am and the EEG techs said Neuro would be looking at it this morning
before office hours. 1st Neuro- had it mid week and they were calling me with
abnormal results early the next week.

Sharon

--- In LandauKleffnerSyndrome@yahoogroups.com, "slacker_15129" <slacker361@...>
wrote:
>
>
> How long does it take to get the results of a 24 hour eeg?
>
> right now I am looking at 3 weeks and the doctors hasnt even looked at my sons
eeg, is this normal from what you guys are seeing?
>
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Mia" <generalhysteria@> wrote:
> >
> > Sharon~
> >
> > I hope the EEG gives at least gives some good information.
> >
> > Mia.
> >
> > --- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@> wrote:
> > >
> > > Becky,
> > >
> > > We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb.
This was planned to be in conjuction with med change to Lamictal and wean from
Keppra but we had a few problems with Lamictal and will resume following EEG at
lower dose and slower titration schedule. Would like for it be 72 hours but
Neuro did not order it that way. This is also "baseline" EEG for new Neuro.
That's our story.
> > >
> > > Take care,
> > > Sharon
> > >
> > > --- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@> wrote:
> > > >
> > > > Hi again,
> > > >
> > > > I was wondering how often you all are repeating EEG's and if they are
only over-nighters now.  It's been a year for us.
> > > >
> > > > Thanks
> > > >
> > > > Becky
> > > >
> > > > ps, I know how subjective this is...just curious.
> > > >
> > >
> >
>

 

Hi Martha -

 

Thanks so much for the kind response. I feel awful that we have not pursued treating the EEG on our son who is now 15 in ages. When he was first diagnosed by Chez we tried depakote and steroids but he was tiny then. Over the years we did try zonegran and aricept and a number of meds. Still we never tried lamictal or trileptal and we will always wonder if the depakote might work now. We had a lot of trouble getting it all in him and are not sure if we ever reached a therapeutic level. I will try to find Kanner or an associate. Seems to me we saw Heydemann years ago (he may have been UIC tho it is hard to recall) and he did not want to treat the EEG at all. Thanks again!

 

Cathy M.

 

----- Original Message -----
From: "mrth_ryn" <msryan3@msn.com>
To: LandauKleffnerSyndrome@yahoogroups.com
Sent: Sunday, November 8, 2009 8:15:58 PM GMT -06:00 US/Canada Central
Subject: [LandauKleffnerSyndrome] Re: New  need help. Seizures  lack of language

 

Cathy - We saw Dr. Kanner at RUSH but that was almost 5 yrs ago and he was more of surgery consult. Check their website and see if they have anyone new there. Dr. Kanner is awesome though, because he is a psychaiatrist and a pediatric neurologist. He called our neuro in Cleveland and they together, discussed Hannah. She was diagnosed LKS variant because she also had activity in occipital and centrotemporal areas. She also was called variant because she lost speech slowly over a period of time. She regained her speech on steroids but still has a long way to go with academics. She is now 12 and has a clear EEG, we are in the process of weaning her zonegran, keep your fingers crossed!!Good Luck - Martha

--- In LandauKleffnerSyndrome@yahoogroups.com, cemmom@... wrote:
>
>
>
> Hi all -
>
>
>
> Sorry to jump in but is there a particular neuro at Rush who is recommended? Also, generally speaking, are neuros nowadays recognizing LKS variant? The reason I ask is my son does not fit the criteria for true LKS but does have subclinical seizures in the temporal and occipital lobes. It was speculated years ago that he might have a variant of LKS (we saw Dr. Chez) and we treated with depakote and steroids with no improvement. Well, depakote none and steroids a small amount. Are they likely to take this seriously nowadays or are they still saying yes a lot of these kids have abnormal EEGs but there is no way to treat them and even if we do there is no guarantee they will improve. Thanks for any insight.
>
>
>
> Cathy
> ----- Original Message -----
> From: "szmidford" <szmidford@...>
> To: LandauKleffnerSyndrome@yahoogroups.com
> Sent: Friday, November 6, 2009 9:22:42 AM GMT -06:00 US/Canada Central
> Subject: [LandauKleffnerSyndrome] Re: New  need help. Seizures  lack of language
>
>  
>
>
>
>
> I would try Rush in Chicago first. Chicago is not far from Indianapolis. If your insurance doesn't cover out of state doctors you may have to pay out of network charges or out of pocket, but then have Rush consult with your local neurologist from there on. Other parents have reported (privately) some difficulties with Dr. Franz, but Cincy Children's may be worth a try after Rush.
>
> Suzanne
>

How long does it take to get the results of a 24 hour eeg?

right now I am looking at 3 weeks and the doctors hasnt even looked at my sons
eeg, is this normal from what you guys are seeing?


--- In LandauKleffnerSyndrome@yahoogroups.com, "Mia" <generalhysteria@...>
wrote:
>
> Sharon~
>
> I hope the EEG gives at least gives some good information.
>
> Mia.
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@> wrote:
> >
> > Becky,
> >
> > We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb. This
was planned to be in conjuction with med change to Lamictal and wean from Keppra
but we had a few problems with Lamictal and will resume following EEG at lower
dose and slower titration schedule. Would like for it be 72 hours but Neuro did
not order it that way. This is also "baseline" EEG for new Neuro. That's our
story.
> >
> > Take care,
> > Sharon
> >
> > --- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@> wrote:
> > >
> > > Hi again,
> > >
> > > I was wondering how often you all are repeating EEG's and if they are only
over-nighters now.  It's been a year for us.
> > >
> > > Thanks
> > >
> > > Becky
> > >
> > > ps, I know how subjective this is...just curious.
> > >
> >
>

Mia,

Thanks, me too!

Sharon

--- In LandauKleffnerSyndrome@yahoogroups.com, "Mia" <generalhysteria@...>
wrote:
>
> Sharon~
>
> I hope the EEG gives at least gives some good information.
>
> Mia.
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@> wrote:
> >
> > Becky,
> >
> > We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb. This
was planned to be in conjuction with med change to Lamictal and wean from Keppra
but we had a few problems with Lamictal and will resume following EEG at lower
dose and slower titration schedule. Would like for it be 72 hours but Neuro did
not order it that way. This is also "baseline" EEG for new Neuro. That's our
story.
> >
> > Take care,
> > Sharon
> >
> > --- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@> wrote:
> > >
> > > Hi again,
> > >
> > > I was wondering how often you all are repeating EEG's and if they are only
over-nighters now.  It's been a year for us.
> > >
> > > Thanks
> > >
> > > Becky
> > >
> > > ps, I know how subjective this is...just curious.
> > >
> >
>

Sharon~

I hope the EEG gives at least gives some good information.

Mia.

--- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@...> wrote:
>
> Becky,
>
> We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb. This
was planned to be in conjuction with med change to Lamictal and wean from Keppra
but we had a few problems with Lamictal and will resume following EEG at lower
dose and slower titration schedule. Would like for it be 72 hours but Neuro did
not order it that way. This is also "baseline" EEG for new Neuro. That's our
story.
>
> Take care,
> Sharon
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@> wrote:
> >
> > Hi again,
> >
> > I was wondering how often you all are repeating EEG's and if they are only
over-nighters now.  It's been a year for us.
> >
> > Thanks
> >
> > Becky
> >
> > ps, I know how subjective this is...just curious.
> >
>

Hi Becky,

I pretty much get a 24hr EEG when I want one. When I have said my son is
declining I ask if he can have an EEG.

I have also been told every medicine change should be given an EEG, which we
have not had, but he has had so many it would probably nearly cover every
medicine change. He had one few weeks ago, and is having another on Monday. 
Since having ESES/LKS, he has probably had an EEG approximately at least every 2
months. When he was stable - his EEG cleared - we obviously didn't need any
EEG's during this time, but when he started declining again.

From what I understand really there is no point really having an EEG unless it
is a sleep EEG.  Luckily, he fell asleep when he had his last EEG, which was not
an overnighter, but a prolonged EEG, basically prolonged until he slept! But if
he would not have slept they would have given him Melatonin to sleep.

Jan

--- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@...> wrote:
>
> Hi again,
>
> I was wondering how often you all are repeating EEG's and if they are only
over-nighters now.  It's been a year for us.
>
> Thanks
>
> Becky
>
> ps, I know how subjective this is...just curious.
>

Becky,

We are going for 24 hour EEG tomorrow. His last 24 hour EEG was in Feb. This was
planned to be in conjuction with med change to Lamictal and wean from Keppra but
we had a few problems with Lamictal and will resume following EEG at lower dose
and slower titration schedule. Would like for it be 72 hours but Neuro did not
order it that way. This is also "baseline" EEG for new Neuro. That's our story.

Take care,
Sharon

--- In LandauKleffnerSyndrome@yahoogroups.com, "beuly1" <beuly1@...> wrote:
>
> Hi again,
>
> I was wondering how often you all are repeating EEG's and if they are only
over-nighters now.  It's been a year for us.
>
> Thanks
>
> Becky
>
> ps, I know how subjective this is...just curious.
>

Hi again,

I was wondering how often you all are repeating EEG's and if they are only
over-nighters now.  It's been a year for us.

Thanks

Becky

ps, I know how subjective this is...just curious.

Cathy - We saw Dr. Kanner at RUSH but that was almost 5 yrs ago and he was more
of surgery consult. Check their website and see if they have anyone new there.
Dr. Kanner is awesome though, because he is a psychaiatrist and a pediatric
neurologist. He called our neuro in Cleveland and they together, discussed
Hannah. She was diagnosed LKS variant because she also had activity in occipital
and centrotemporal areas. She also was called variant because she lost speech
slowly over a period of time. She regained her speech on steroids but still has
a long way to go with academics. She is now 12 and has a clear EEG, we are in
the process of weaning her zonegran, keep your fingers crossed!!Good Luck -
Martha

--- In LandauKleffnerSyndrome@yahoogroups.com, cemmom@... wrote:
>
>
>
> Hi all -
>
>
>
> Sorry to jump in but is there a particular neuro at Rush who is recommended?
Also, generally speaking, are neuros nowadays recognizing LKS variant? The
reason I ask is my son does not fit the criteria for true LKS but does have
subclinical seizures in the temporal and occipital lobes. It was speculated
years ago that he might have a variant of LKS (we saw Dr. Chez) and we treated
with depakote and steroids with no improvement. Well, depakote none and steroids
a small amount. Are they likely to take this seriously nowadays or are
they still saying yes a lot of these kids have abnormal EEGs but there is no
way to treat them and even if we do there is no guarantee they will improve.
Thanks for any insight.
>
>
>
> Cathy
> ----- Original Message -----
> From: "szmidford" <szmidford@...>
> To: LandauKleffnerSyndrome@yahoogroups.com
> Sent: Friday, November 6, 2009 9:22:42 AM GMT -06:00 US/Canada Central
> Subject: [LandauKleffnerSyndrome] Re: New  need help. Seizures  lack of
language
>
>  
>
>
>
>
> I would try Rush in Chicago first. Chicago is not far from Indianapolis. If
your insurance doesn't cover out of state doctors you may have to pay out of
network charges or out of pocket, but then have Rush consult with your local
neurologist from there on. Other parents have reported (privately) some
difficulties with Dr. Franz, but Cincy Children's may be worth a try after Rush.
>
> Suzanne
>