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
>