Hi ,


Yes I saw that post on another group and I can not remember where. Do you
remember what discussion group that was on? I would like to talk to her.
Cincinnati is close to us. thanks
Kathy




--- In LandauKleffnerSyndrome@yahoogroups.com, "Bill/Sue Mahan" <bill.mahan@...>
wrote:
>
> Kathy,
>
> Just an idea, but a mom from another discussion group said David Franz, MD, a
Neurologist at Cincinnati Children's Hospital is great to work with. She said
he uses IVIG at a first line of treatment for patients with autism and seizures
and her son's treatment is covered 100 percent. For each monthly infusion her
son is admitted into the hospital overnight because a slow (very slow) drip
method is used, etc. Would your insurance cover treatment in Ohio?
>
> Sue
>
> ----- Original Message -----
> From: dvsdean
> To: LandauKleffnerSyndrome@yahoogroups.com
> Sent: Thursday, November 05, 2009 11:13 PM
> Subject: [LandauKleffnerSyndrome] Re: New need help. Seizures lack of
language
>
>
>
> Thanks for the information. We need to find a Neurologist,. The problem is
to find someone here in Indiana. A neurologist that can help and not have me go
down the wrong path again. I would love to find someone who thinks outside the
box. I don't need a cookie cutter approach . Already had that and lost yrs of
help. Dr Best did say that he recommended a MRI so I will ask him who he might
suggest. There was evidence of mid corpus collosum narrowing . Lately every time
I think about these findings I just want to cry . This information is so hard to
get through. I thought the autism diagnosis was bad. Now it just gets worse. I
hope there is hope for my son.
> Best
> Kathy
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "Sharon" <cgibson91@> wrote:
> >
> > Kathy,
> > Depakote is considered one of the first line antiseizure drugs for LKS.
Kids usually become cranky and irritable when they first start taking it which
should improve over time.The doc will usually titrate dosage up to a maintenance
dose and blood levels are required with this medication to make sure it is
therapeutic but not toxic. The fish oil and Vitamin D supplement are fine and
also Depakote depletes Carnitine which can be purchased OTC. My son was also 9
and weighed about 85 lbs when he started Depakote and I replaced with Acetyl L-
Carnitine 250 mg twice a day. We were unable to stay on Depakote after 30 day
trial due to most unusual side effect of having urine frequency up to 15 times
per hour (effects only 1-5% of kids). We were trying to wean Keppra to remain on
Depakote but it did not work. He is still on Keprra and we are now moving on to
Lamictal and after a few bumps in the road will resume this next week.
> >
> > Certainly, you have a Neurologist guiding his care that is prescribing
meds, in addition to Neuropsych, right?
> >
> > The most likely reason Neuropsych wants for your son to speak prior to
puberty is because this is when the body "prunes" away connections in the brain
that don't make sense- "neurons that fire together, wire together." When a child
has an abnormal EEG- neurons are not firing together. Puberty will bring about
pruning of these abnormal processes and make it most difficult for language to
even be possible. Language arises out of the temporal lobe and if that is the
area for abnormal EEG abnormalities then connections will be cut during puberty
that will not allow language to be possible or most difficult to achieve going
forward.
> >
> > Hopefully, antiseizure meds will make his situation improve by improving
the EEG and allowing language to be possible. He may be a candidiate for
steroids if he does not quickly respond to antiseizures as time is of the
essence to salvage brain pathways.Language is not possible in the full blown
presence of LKS even with the most aggressive therapy which it sounds like your
child has been in. Have you tried sign language with any success??
> >
> > We have never done HBOT but many parents from this site have done so- you
can search old posts by key word search from site to see what parents had to
say.Would urge you to read old posts to get a feel for meds, how kids respond
and how difficult it can be in treating these children with meds. No 2 children
have the same response to same meds.What works for one may not work for another.
Trial and learn process.
> >
> > Hope you find some of this useful. It sound like you have been on a long
road of misdiagnosis with your child and I can empathize with your situation.
Good luck in all your endeavors on behalf of your child.
> >
> > Take Care,
> > Sharon
> >
> > --- In LandauKleffnerSyndrome@yahoogroups.com, "dvsdean" <dvsdean@> wrote:
> > >
> > > Hi,
> > >
> > > Anyone using Depakote with their child ? What kind of experiences are
you seeing? Is there other therapies that can help like HBOT ? I was told to
give fish oil and vit D along with starting Depakote.
> > >
> > > Best
> > > Kathy
> > >
> > >
> > > --- In LandauKleffnerSyndrome@yahoogroups.com, "dvsdean" <dvsdean@>
wrote:
> > > >
> > > > Hi,
> > > >
> > > > I just started my son on Depakote we are on day 3. He is on 125mg. He
had noticeable seizures right in front of the neuro psychologist and his spect
scan was showing seizures. His EEG shows a mild to moderate degree of diffuse
slow transients. We have done DAN biomed protocol things like special diet and
chelation . We have done this for 6 yrs and along with speech and OT. We are not
getting anywhere with all this therapy . SO that is why I looked into spect
scan.
> > > > We had a EEG when he was 4 yrs old, but it was a joke of about 10 mins
long . This doctor that I just saw is shaking his head on why this child never
received a MRI and a Longer EEG. Also my son regressed with language at 15 to 18
months. He was more alert and was saying bye bye and singing a few songs. Then
he stop talking and never would hear me . I check his hearing and it was fine.
We did the Anne Connely test and it came back positive IgM for LKS.
> > > > What are some things that has help with seizures and language? My son
is 9 yrs old and the neuro psychologist said he wants him talking before puberty
. Well that is pressure for me . Heck I have tried to get language for 6 yrs
with all these other things and speech therapy.
> > > > thanks
> > > > best
> > > > Kathy
> > > >
> > >
> >
>