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
>
>
>
>
>
>
>
>
> 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
> >
>