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
>