Sounds like my kid and she is diagnosed LKS variant. The watching the mouth

thing is from trying to read lips. Hannah did this. I would get an appt with

another neuro while working with this one. It can't hurt. We even got our dx

from Cleveland and then went to Rush in Chicago for a second opinion. Our neuro

at Cleveland was completely fine with this, he said he would do the same if it

were his daughter. Any neuro worth their salt should not be offended by a second

opinion!!- Martha





--- In LandauKleffnerSyndrome@yahoogroups.com, hildy gogal <hildygogal@...>

wrote:

>

> As some of you may remember from my previous posts........our neuro does not

think our daughter has LKS. Not sure how she can make that decision after

admitting that she has never treated a child with LKS?  I did however manage to

convince her to write us a script for the Ann Connolly test.  If my daughter is

+ what argument's can I make to get the neuro to tx my daughter with steroids

and anti seizure meds?

>  

> I have called other neuro's and to be honest I feel extremely frustrated

starting the process all over with yet another neuro. Some of the neuro's that

have experiences with LKS kids don't have any appointments anytime soon and

charge a ton. Meanwhile the clock is ticking!  I realize I am not telling anyone

here anything new...it's just frustrating to tell my daughter's story to every

doctor/therapist we meet and get no answers/help.

>  

> I'd like to share the following with you and wonder what you guys make of

this....since all of you have experience with LKS I really value your opinions.

Thanks for reading this long e-mail....you have all been so helpful and have

taught me so much about LKS.

>  

> I have a 4.5 year old daughter that at one point functioned as a typical child

(until she was 32mths of age).  At 32mths of age she regressed (play, social,

language etc).  We implemented therapies/diet/supplements within weeks of

her regressing.  Currently, she is making some progress ("slow and steady"-per

school) but her language skills have continued to decrease....she now babbles

and has not one single word left.  Even when she regressed at 32mths of age she

had some words.....but slowly they all have disappeared.  I find this odd

considering all of the services she gets (they are pretty intense), including 6

sessions of speech therapy per week.

>  

> Anyhow....I made a very interesting discovering recently and was wondering if

anyone  could explain it to me and/or provide with some sort of

guidance/insight.

>  

> If I present a picture of an item to my daughter for example  "ball" and then

say "get ball" while showing her the picture of the ball she can do it.  Doing

this she is basically matching the picture with the real item.  If I just say

"get ball" she has no idea what I'm saying, unless I provide a visual (point to

the ball).  This is a kid who was once speaking in phrases and some

sentences.....it's  also VERY apparent that she can not physically produce words

and truly seems amazed that we can produce words (she forever is watching our

mouths).  She does not have any hearing issues.  She does present like she is on

the spectrum.....but I just know there is more to it...I can just feel it.

>  

>  

> Any thoughts are appreciated..........as I'm getting little advice from our

doctors/therapists. I feel like most people have given up on her.

>  

> Thank you

>

Hildy,

If I remember correctly from your previous posts...you also said you were going

to have a repeat 24 hour EEG, has that been done??...if that is abnormal you may

have a greater argument with that along with the Anne Connelly test if it is

positive.Are you also seeing Dr Rossingnol(sp??). From reading these posts he

has been willing to coordinate with the Neurologists on how best to treat these

children.

My first visit with Neuro I had to fight for AED's, suggest type and was told by

him it would not work!!Just now (8 months later) have obtained pulsed steroids.I

hear, understand, feel and sympathize with your frustration/pain regarding your

daughter and the clock ticking. We are going into our 5th year of symptoms with

our son.

Your daughters symptoms sound very typical of LKS. These children lose their

auditory comprehension and receptive/expressive ability while maintaining their

visual abilities. Word agnosia, word deafness.Although their hearing is just

fine. It's a brain processing problem not an ear problem.That is why she

understands "seeing" the card with the ball on it but does not understand the

spoken word when said alone without the picture. I had index cards posted all

over the house with words on them on all common household items (chair, table,

bed etc) when we were teaching my son to read and it helped. I have since taken

them down as he can now read but he still asks where they are at times.Misses

them!

My son has similar tales we did not understand at the time early in his disease

process...his 4 yo preschool teacher said he would not complete a simple art

project...he just sat there. When he later "saw" the completed work done by the

other children, he raced to complete his project as he finally "understood" what

to do. He was not understanding or hearing her instructions.She thought he was

just not utilizing time properly/couldn't hear. Hearing was tested and fine. I

now understand what was going on...I didn't at the time.Same as in Kindergarten,

the school psychologist did an observation and said Thomas got up in the middle

of teacher "talking" in front of the class and was wandering around the

classroom "like class wasn't even taking place". He said he had never seen

anything like it in a child...well, in Thomas' mind the teacher wasn't talking

or ,at least, not anything he could understand/hear and he was bored so he got

up and was moving around!! Hearing was again tested and fine...I now understand

that event also.



The most important thing is for you not to give up on her...keep fighting if you

know you are right. This should not have to be the battle that it is BUT

unfortunately, due to the rarity of the disease and lack of Neurologists

knowledgeable or willing to identify and treat this syndrome IT IS!!! Just keep

thinking how frustating this must be for her...their general intelligence is not

effected...that is why they can continue to learn via visual methods.You have

several hospitals (PA, NY)up there that deal in LKS specifically moreso than

other areas. You are early in the process...if you do not think you are going to

make headway with current Neurologist...MAKE THE CHANGE NOW.Schedule the appt,

the time will go by and you will have another opinion by somebody more

knowledgeable that specializes in this. Meanwhile, you may want to try

Neuropsych for an opinion not just Neurology.They are different specialities but

work together usually.



We have all been in your shoes...don't give up...WE KNOW the

frustration...somebody said on this site this is a marathon not a

sprint...truest statement ever written!! Would have been easier to train and run

the Boston Marathon than what we have been through.Keep yourself strong...post

and complain to us for support but keep fighting for your daughters' sake.There

are many success stories from moms on this site so keep that in mind also. That

has pulled me through many rough patches.



Take care, will say a prayer for you and your daughter.

Sharon





--- In LandauKleffnerSyndrome@yahoogroups.com, hildy gogal <hildygogal@...>

wrote:

>

> As some of you may remember from my previous posts........our neuro does not

think our daughter has LKS. Not sure how she can make that decision after

admitting that she has never treated a child with LKS?  I did however manage to

convince her to write us a script for the Ann Connolly test.  If my daughter is

+ what argument's can I make to get the neuro to tx my daughter with steroids

and anti seizure meds?

>  

> I have called other neuro's and to be honest I feel extremely frustrated

starting the process all over with yet another neuro. Some of the neuro's that

have experiences with LKS kids don't have any appointments anytime soon and

charge a ton. Meanwhile the clock is ticking!  I realize I am not telling anyone

here anything new...it's just frustrating to tell my daughter's story to every

doctor/therapist we meet and get no answers/help.

>  

> I'd like to share the following with you and wonder what you guys make of

this....since all of you have experience with LKS I really value your opinions.

Thanks for reading this long e-mail....you have all been so helpful and have

taught me so much about LKS.

>  

> I have a 4.5 year old daughter that at one point functioned as a typical child

(until she was 32mths of age).  At 32mths of age she regressed (play, social,

language etc).  We implemented therapies/diet/supplements within weeks of

her regressing.  Currently, she is making some progress ("slow and steady"-per

school) but her language skills have continued to decrease....she now babbles

and has not one single word left.  Even when she regressed at 32mths of age she

had some words.....but slowly they all have disappeared.  I find this odd

considering all of the services she gets (they are pretty intense), including 6

sessions of speech therapy per week.

>  

> Anyhow....I made a very interesting discovering recently and was wondering if

anyone  could explain it to me and/or provide with some sort of

guidance/insight.

>  

> If I present a picture of an item to my daughter for example  "ball" and then

say "get ball" while showing her the picture of the ball she can do it.  Doing

this she is basically matching the picture with the real item.  If I just say

"get ball" she has no idea what I'm saying, unless I provide a visual (point to

the ball).  This is a kid who was once speaking in phrases and some

sentences.....it's  also VERY apparent that she can not physically produce words

and truly seems amazed that we can produce words (she forever is watching our

mouths).  She does not have any hearing issues.  She does present like she is on

the spectrum.....but I just know there is more to it...I can just feel it.

>  

>  

> Any thoughts are appreciated..........as I'm getting little advice from our

doctors/therapists. I feel like most people have given up on her.

>  

> Thank you

>

Hildy,



Several of us on this board see Dr. Rossignol. He is a DAN! doctor, a family

practice physician, and has two children of his own with LKSV. He has been

treating many children for it in recent years. His therapies include

anticonvulsant medications as well as steroids, IVIG, and HBOT. Of all the

biomedical doctors we've seen, he is by far the best. He's an excellent

physician, brilliant, very sensitive, with great attention to detail, and very

involved with his patients.  He is especially attentive to what parents have to

say about their childrens' symptoms and their ideas for treatment.  The practice

has patients from all over the world, we consult by phone every 6-8 weeks, and

only see him in person once a year.



Not many other DAN! doctors are experienced yet in treating subclinical

seizures, but I seem to recall Dr. Neubrander in NJ has been doing a little bit

with it. He also uses HBOT.



Suzanne



--- In LandauKleffnerSyndrome@yahoogroups.com, hildy gogal <hildygogal@...>

wrote:

>

> Sharon,

>  

> I love your e-mails......they are always so informitive and always motivate

me.

>  

> I scheduled a phone conference with my current neuro about tx for LKS.  In the

meantime I will also schedule an appointment with another  neuro.  We do not see

Dr. Rossingnol..he is in Florida, right?  We are in NJ.

>  

> Thanks Sharon!

>

> --- On Tue, 7/7/09, cgibson91 <cgibson91@...> wrote:

>

>

> From: cgibson91 <cgibson91@...>

> Subject: [LandauKleffnerSyndrome] Re: Is this a symptom of LKS?

> To: LandauKleffnerSyndrome@yahoogroups.com

> Date: Tuesday, July 7, 2009, 10:23 PM

>

>

>

>

>

>

>

>

> Hildy,

> If I remember correctly from your previous posts...you also said you were

going to have a repeat 24 hour EEG, has that been done??...if that is abnormal

you may have a greater argument with that along with the Anne Connelly test if

it is positive.Are you also seeing Dr Rossingnol(sp? ?). From reading these

posts he has been willing to coordinate with the Neurologists on how best to

treat these children.

> My first visit with Neuro I had to fight for AED's, suggest type and was told

by him it would not work!!Just now (8 months later) have obtained pulsed

steroids.I hear, understand, feel and sympathize with your frustration/ pain

regarding your daughter and the clock ticking. We are going into our 5th year of

symptoms with our son.

> Your daughters symptoms sound very typical of LKS. These children lose their

auditory comprehension and receptive/expressiv e ability while maintaining their

visual abilities. Word agnosia, word deafness.Although their hearing is just

fine. It's a brain processing problem not an ear problem.That is why she

understands "seeing" the card with the ball on it but does not understand the

spoken word when said alone without the picture. I had index cards posted all

over the house with words on them on all common household items (chair, table,

bed etc) when we were teaching my son to read and it helped. I have since taken

them down as he can now read but he still asks where they are at times.Misses

them!

> My son has similar tales we did not understand at the time early in his

disease process...his 4 yo preschool teacher said he would not complete a simple

art project...he just sat there. When he later "saw" the completed work done by

the other children, he raced to complete his project as he finally "understood"

what to do. He was not understanding or hearing her instructions. She thought he

was just not utilizing time properly/couldn' t hear. Hearing was tested and

fine. I now understand what was going on...I didn't at the time.Same as in

Kindergarten, the school psychologist did an observation and said Thomas got up

in the middle of teacher "talking" in front of the class and was wandering

around the classroom "like class wasn't even taking place". He said he had never

seen anything like it in a child...well, in Thomas' mind the teacher wasn't

talking or ,at least, not anything he could understand/hear and he was bored so

he got up and was moving

>  around!! Hearing was again tested and fine...I now understand that event

also.

>

> The most important thing is for you not to give up on her...keep fighting if

you know you are right. This should not have to be the battle that it is BUT

unfortunately, due to the rarity of the disease and lack of Neurologists

knowledgeable or willing to identify and treat this syndrome IT IS!!! Just keep

thinking how frustating this must be for her...their general intelligence is not

effected...that is why they can continue to learn via visual methods.You have

several hospitals (PA, NY)up there that deal in LKS specifically moreso than

other areas. You are early in the process...if you do not think you are going to

make headway with current Neurologist. ..MAKE THE CHANGE NOW.Schedule the appt,

the time will go by and you will have another opinion by somebody more

knowledgeable that specializes in this. Meanwhile, you may want to try

Neuropsych for an opinion not just Neurology.They are different specialities but

work together usually.

>

> We have all been in your shoes...don' t give up...WE KNOW the frustration.

..somebody said on this site this is a marathon not a sprint...truest statement

ever written!! Would have been easier to train and run the Boston Marathon than

what we have been through.Keep yourself strong...post and complain to us for

support but keep fighting for your daughters' sake.There are many success

stories from moms on this site so keep that in mind also. That has pulled me

through many rough patches.

>

> Take care, will say a prayer for you and your daughter.

> Sharon

>

>

> --- In LandauKleffnerSyndr ome@yahoogroups. com, hildy gogal <hildygogal@ ...>

wrote:

> >

> > As some of you may remember from my previous posts....... .our neuro does

not think our daughter has LKS. Not sure how she can make that decision after

admitting that she has never treated a child with LKS?  I did however manage to

convince her to write us a script for the Ann Connolly test.  If my daughter is

+ what argument's can I make to get the neuro to tx my daughter with steroids

and anti seizure meds?

> >  

> > I have called other neuro's and to be honest I feel extremely frustrated

starting the process all over with yet another neuro. Some of the neuro's that

have experiences with LKS kids don't have any appointments anytime soon and

charge a ton. Meanwhile the clock is ticking!  I realize I am not telling anyone

here anything new...it's just frustrating to tell my daughter's story to every

doctor/therapist we meet and get no answers/help.

> >  

> > I'd like to share the following with you and wonder what you guys make of

this....since all of you have experience with LKS I really value your opinions.

Thanks for reading this long e-mail....you have all been so helpful and have

taught me so much about LKS.

> >  

> > I have a 4.5 year old daughter that at one point functioned as a typical

child (until she was 32mths of age).  At 32mths of age she regressed (play,

social, language etc).  We implemented therapies/diet/ supplements  within weeks

of her regressing.  Currently, she is making some progress ("slow and

steady"-per school) but her language skills have continued to decrease.... she

now babbles and has not one single word left.  Even when she regressed at 32mths

of age she had some words.....but slowly they all have disappeared.  I find this

odd considering all of the services she gets (they are pretty intense),

including 6 sessions of speech therapy per week.

> >  

> > Anyhow....I made a very interesting discovering recently and was wondering

if anyone  could explain it to me and/or provide with some sort of

guidance/insight.

> >  

> > If I present a picture of an item to my daughter for example  "ball" and

then say "get ball" while showing her the picture of the ball she can do it. 

Doing this she is basically matching the picture with the real item.  If I just

say "get ball" she has no idea what I'm saying, unless I provide a visual (point

to the ball).  This is a kid who was once speaking in phrases and some

sentences... ..it's  also VERY apparent that she can not physically produce

words and truly seems amazed that we can produce words (she forever is watching

our mouths).  She does not have any hearing issues.  She does present like she

is on the spectrum.... .but I just know there is more to it...I can just feel

it.

> >  

> >  

> > Any thoughts are appreciated. ......... as I'm getting little advice from

our doctors/therapists. I feel like most people have given up on her.

> >  

> > Thank you

> >

>

Hildy,

Glad I could help...I told my husband that your emails remind me very much of

where I was last Fall. See myself in your emails. Other moms on this site helped

me get to this point, my thanks to them also!!Yes, I knew you were in NJ but for

some reason I thought you had a "Autism MD" also and thought it was Dr Ross...in

Florida. Hard keeping up with who everyone sees without having to track down old

emails. I wish we had a "pop up window" of each childs

history/diagnosis/age/treatments when we post or reply to email. Would make it

sooo much easier.



Good Luck with conference call.

Sharon



--- In LandauKleffnerSyndrome@yahoogroups.com, hildy gogal <hildygogal@...>

wrote:

>

> Sharon,

>  

> I love your e-mails......they are always so informitive and always motivate

me.

>  

> I scheduled a phone conference with my current neuro about tx for LKS.  In the

meantime I will also schedule an appointment with another  neuro.  We do not see

Dr. Rossingnol..he is in Florida, right?  We are in NJ.

>  

> Thanks Sharon!

>

> --- On Tue, 7/7/09, cgibson91 <cgibson91@...> wrote:

>

>

> From: cgibson91 <cgibson91@...>

> Subject: [LandauKleffnerSyndrome] Re: Is this a symptom of LKS?

> To: LandauKleffnerSyndrome@yahoogroups.com

> Date: Tuesday, July 7, 2009, 10:23 PM

>

>

>

>

>

>

>

>

> Hildy,

> If I remember correctly from your previous posts...you also said you were

going to have a repeat 24 hour EEG, has that been done??...if that is abnormal

you may have a greater argument with that along with the Anne Connelly test if

it is positive.Are you also seeing Dr Rossingnol(sp? ?). From reading these

posts he has been willing to coordinate with the Neurologists on how best to

treat these children.

> My first visit with Neuro I had to fight for AED's, suggest type and was told

by him it would not work!!Just now (8 months later) have obtained pulsed

steroids.I hear, understand, feel and sympathize with your frustration/ pain

regarding your daughter and the clock ticking. We are going into our 5th year of

symptoms with our son.

> Your daughters symptoms sound very typical of LKS. These children lose their

auditory comprehension and receptive/expressiv e ability while maintaining their

visual abilities. Word agnosia, word deafness.Although their hearing is just

fine. It's a brain processing problem not an ear problem.That is why she

understands "seeing" the card with the ball on it but does not understand the

spoken word when said alone without the picture. I had index cards posted all

over the house with words on them on all common household items (chair, table,

bed etc) when we were teaching my son to read and it helped. I have since taken

them down as he can now read but he still asks where they are at times.Misses

them!

> My son has similar tales we did not understand at the time early in his

disease process...his 4 yo preschool teacher said he would not complete a simple

art project...he just sat there. When he later "saw" the completed work done by

the other children, he raced to complete his project as he finally "understood"

what to do. He was not understanding or hearing her instructions. She thought he

was just not utilizing time properly/couldn' t hear. Hearing was tested and

fine. I now understand what was going on...I didn't at the time.Same as in

Kindergarten, the school psychologist did an observation and said Thomas got up

in the middle of teacher "talking" in front of the class and was wandering

around the classroom "like class wasn't even taking place". He said he had never

seen anything like it in a child...well, in Thomas' mind the teacher wasn't

talking or ,at least, not anything he could understand/hear and he was bored so

he got up and was moving

>  around!! Hearing was again tested and fine...I now understand that event

also.

>

> The most important thing is for you not to give up on her...keep fighting if

you know you are right. This should not have to be the battle that it is BUT

unfortunately, due to the rarity of the disease and lack of Neurologists

knowledgeable or willing to identify and treat this syndrome IT IS!!! Just keep

thinking how frustating this must be for her...their general intelligence is not

effected...that is why they can continue to learn via visual methods.You have

several hospitals (PA, NY)up there that deal in LKS specifically moreso than

other areas. You are early in the process...if you do not think you are going to

make headway with current Neurologist. ..MAKE THE CHANGE NOW.Schedule the appt,

the time will go by and you will have another opinion by somebody more

knowledgeable that specializes in this. Meanwhile, you may want to try

Neuropsych for an opinion not just Neurology.They are different specialities but

work together usually.

>

> We have all been in your shoes...don' t give up...WE KNOW the frustration.

..somebody said on this site this is a marathon not a sprint...truest statement

ever written!! Would have been easier to train and run the Boston Marathon than

what we have been through.Keep yourself strong...post and complain to us for

support but keep fighting for your daughters' sake.There are many success

stories from moms on this site so keep that in mind also. That has pulled me

through many rough patches.

>

> Take care, will say a prayer for you and your daughter.

> Sharon

>

>

> --- In LandauKleffnerSyndr ome@yahoogroups. com, hildy gogal <hildygogal@ ...>

wrote:

> >

> > As some of you may remember from my previous posts....... .our neuro does

not think our daughter has LKS. Not sure how she can make that decision after

admitting that she has never treated a child with LKS?  I did however manage to

convince her to write us a script for the Ann Connolly test.  If my daughter is

+ what argument's can I make to get the neuro to tx my daughter with steroids

and anti seizure meds?

> >  

> > I have called other neuro's and to be honest I feel extremely frustrated

starting the process all over with yet another neuro. Some of the neuro's that

have experiences with LKS kids don't have any appointments anytime soon and

charge a ton. Meanwhile the clock is ticking!  I realize I am not telling anyone

here anything new...it's just frustrating to tell my daughter's story to every

doctor/therapist we meet and get no answers/help.

> >  

> > I'd like to share the following with you and wonder what you guys make of

this....since all of you have experience with LKS I really value your opinions.

Thanks for reading this long e-mail....you have all been so helpful and have

taught me so much about LKS.

> >  

> > I have a 4.5 year old daughter that at one point functioned as a typical

child (until she was 32mths of age).  At 32mths of age she regressed (play,

social, language etc).  We implemented therapies/diet/ supplements  within weeks

of her regressing.  Currently, she is making some progress ("slow and

steady"-per school) but her language skills have continued to decrease.... she

now babbles and has not one single word left.  Even when she regressed at 32mths

of age she had some words.....but slowly they all have disappeared.  I find this

odd considering all of the services she gets (they are pretty intense),

including 6 sessions of speech therapy per week.

> >  

> > Anyhow....I made a very interesting discovering recently and was wondering

if anyone  could explain it to me and/or provide with some sort of

guidance/insight.

> >  

> > If I present a picture of an item to my daughter for example  "ball" and

then say "get ball" while showing her the picture of the ball she can do it. 

Doing this she is basically matching the picture with the real item.  If I just

say "get ball" she has no idea what I'm saying, unless I provide a visual (point

to the ball).  This is a kid who was once speaking in phrases and some

sentences... ..it's  also VERY apparent that she can not physically produce

words and truly seems amazed that we can produce words (she forever is watching

our mouths).  She does not have any hearing issues.  She does present like she

is on the spectrum.... .but I just know there is more to it...I can just feel

it.

> >  

> >  

> > Any thoughts are appreciated. ......... as I'm getting little advice from

our doctors/therapists. I feel like most people have given up on her.

> >  

> > Thank you

> >

>

Yes, most of their patients are from all over the world. Melbourne Florida is a

very small town. People come from all over. We do phone consults every 6-8 weeks

and visit in person once a year.



Suzanne



--- In LandauKleffnerSyndrome@yahoogroups.com, hildy gogal <hildygogal@...>

wrote:

>

> does he treat patients from out of town?

>

> --- On Wed, 7/8/09, Suzanne <iverus@...> wrote:

>

>

> From: Suzanne <iverus@...>

> Subject: [LandauKleffnerSyndrome] Re: Is this a symptom of LKS?

> To: LandauKleffnerSyndrome@yahoogroups.com

> Date: Wednesday, July 8, 2009, 3:23 PM

>

>

>

>

>

>

>

>

> Hildy,

>

> Several of us on this board see Dr. Rossignol. He is a DAN! doctor, a family

practice physician, and has two children of his own with LKSV. He has been

treating many children for it in recent years. His therapies include

anticonvulsant medications as well as steroids, IVIG, and HBOT. Of all the

biomedical doctors we've seen, he is by far the best. He's an excellent

physician, brilliant, very sensitive, with great attention to detail, and very

involved with his patients. He is especially attentive to what parents have to

say about their childrens' symptoms and their ideas for treatment. The practice

has patients from all over the world, we consult by phone every 6-8 weeks, and

only see him in person once a year.

>

> Not many other DAN! doctors are experienced yet in treating subclinical

seizures, but I seem to recall Dr. Neubrander in NJ has been doing a little bit

with it. He also uses HBOT.

>

> Suzanne

>

> --- In LandauKleffnerSyndr ome@yahoogroups. com, hildy gogal <hildygogal@ ...>

wrote:

> >

> > Sharon,

> >  

> > I love your e-mails..... .they are always so informitive and always motivate

me.

> >  

> > I scheduled a phone conference with my current neuro about tx for LKS.  In

the meantime I will also schedule an appointment with another  neuro.  We do not

see Dr. Rossingnol.. he is in Florida, right?  We are in NJ.

> >  

> > Thanks Sharon!

> >

> > --- On Tue, 7/7/09, cgibson91 <cgibson91@ ..> wrote:

> >

> >

> > From: cgibson91 <cgibson91@ ..>

> > Subject: [LandauKleffnerSynd rome] Re: Is this a symptom of LKS?

> > To: LandauKleffnerSyndr ome@yahoogroups. com

> > Date: Tuesday, July 7, 2009, 10:23 PM

> >

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> >

> >

> >

> > Hildy,

> > If I remember correctly from your previous posts...you also said you were

going to have a repeat 24 hour EEG, has that been done??...if that is abnormal

you may have a greater argument with that along with the Anne Connelly test if

it is positive.Are you also seeing Dr Rossingnol(sp? ?). From reading these

posts he has been willing to coordinate with the Neurologists on how best to

treat these children.

> > My first visit with Neuro I had to fight for AED's, suggest type and was

told by him it would not work!!Just now (8 months later) have obtained pulsed

steroids.I hear, understand, feel and sympathize with your frustration/ pain

regarding your daughter and the clock ticking. We are going into our 5th year of

symptoms with our son.

> > Your daughters symptoms sound very typical of LKS. These children lose their

auditory comprehension and receptive/expressiv e ability while maintaining their

visual abilities. Word agnosia, word deafness.Although their hearing is just

fine. It's a brain processing problem not an ear problem.That is why she

understands "seeing" the card with the ball on it but does not understand the

spoken word when said alone without the picture. I had index cards posted all

over the house with words on them on all common household items (chair, table,

bed etc) when we were teaching my son to read and it helped. I have since taken

them down as he can now read but he still asks where they are at times.Misses

them!

> > My son has similar tales we did not understand at the time early in his

disease process...his 4 yo preschool teacher said he would not complete a simple

art project...he just sat there. When he later "saw" the completed work done by

the other children, he raced to complete his project as he finally "understood"

what to do. He was not understanding or hearing her instructions. She thought he

was just not utilizing time properly/couldn' t hear. Hearing was tested and

fine. I now understand what was going on...I didn't at the time.Same as in

Kindergarten, the school psychologist did an observation and said Thomas got up

in the middle of teacher "talking" in front of the class and was wandering

around the classroom "like class wasn't even taking place". He said he had never

seen anything like it in a child...well, in Thomas' mind the teacher wasn't

talking or ,at least, not anything he could understand/hear and he was bored so

he got up and was moving

> > around!! Hearing was again tested and fine...I now understand that event

also.

> >

> > The most important thing is for you not to give up on her...keep fighting if

you know you are right. This should not have to be the battle that it is BUT

unfortunately, due to the rarity of the disease and lack of Neurologists

knowledgeable or willing to identify and treat this syndrome IT IS!!! Just keep

thinking how frustating this must be for her...their general intelligence is not

effected...that is why they can continue to learn via visual methods.You have

several hospitals (PA, NY)up there that deal in LKS specifically moreso than

other areas. You are early in the process...if you do not think you are going to

make headway with current Neurologist. ..MAKE THE CHANGE NOW.Schedule the appt,

the time will go by and you will have another opinion by somebody more

knowledgeable that specializes in this. Meanwhile, you may want to try

Neuropsych for an opinion not just Neurology.They are different specialities but

work together usually.

> >

> > We have all been in your shoes...don' t give up...WE KNOW the frustration.

..somebody said on this site this is a marathon not a sprint...truest statement

ever written!! Would have been easier to train and run the Boston Marathon than

what we have been through.Keep yourself strong...post and complain to us for

support but keep fighting for your daughters' sake.There are many success

stories from moms on this site so keep that in mind also. That has pulled me

through many rough patches.

> >

> > Take care, will say a prayer for you and your daughter.

> > Sharon

> >

> >

> > --- In LandauKleffnerSyndr ome@yahoogroups. com, hildy gogal <hildygogal@

...> wrote:

> > >

> > > As some of you may remember from my previous posts....... .our neuro does

not think our daughter has LKS. Not sure how she can make that decision after

admitting that she has never treated a child with LKS?  I did however manage to

convince her to write us a script for the Ann Connolly test.  If my daughter is

+ what argument's can I make to get the neuro to tx my daughter with steroids

and anti seizure meds?

> > >  

> > > I have called other neuro's and to be honest I feel extremely frustrated

starting the process all over with yet another neuro. Some of the neuro's that

have experiences with LKS kids don't have any appointments anytime soon and

charge a ton. Meanwhile the clock is ticking!  I realize I am not telling anyone

here anything new...it's just frustrating to tell my daughter's story to every

doctor/therapist we meet and get no answers/help.

> > >  

> > > I'd like to share the following with you and wonder what you guys make of

this....since all of you have experience with LKS I really value your opinions.

Thanks for reading this long e-mail....you have all been so helpful and have

taught me so much about LKS.

> > >  

> > > I have a 4.5 year old daughter that at one point functioned as a typical

child (until she was 32mths of age).  At 32mths of age she regressed (play,

social, language etc).  We implemented therapies/diet/ supplements  within weeks

of her regressing.  Currently, she is making some progress ("slow and

steady"-per school) but her language skills have continued to decrease.... she

now babbles and has not one single word left.  Even when she regressed at 32mths

of age she had some words.....but slowly they all have disappeared.  I find this

odd considering all of the services she gets (they are pretty intense),

including 6 sessions of speech therapy per week.

> > >  

> > > Anyhow....I made a very interesting discovering recently and was wondering

if anyone  could explain it to me and/or provide with some sort of

guidance/insight.

> > >  

> > > If I present a picture of an item to my daughter for example  "ball" and

then say "get ball" while showing her the picture of the ball she can do it. 

Doing this she is basically matching the picture with the real item.  If I just

say "get ball" she has no idea what I'm saying, unless I provide a visual (point

to the ball).  This is a kid who was once speaking in phrases and some

sentences... ..it's  also VERY apparent that she can not physically produce

words and truly seems amazed that we can produce words (she forever is watching

our mouths).  She does not have any hearing issues.  She does present like she

is on the spectrum.... .but I just know there is more to it...I can just feel

it.

> > >  

> > >  

> > > Any thoughts are appreciated. ......... as I'm getting little advice from

our doctors/therapists. I feel like most people have given up on her.

> > >  

> > > Thank you

> > >

> >

>