Suzanne,
I pushed for IV Solumerol-actually wanted to do the high dose IV Solumedrol that
is done in hospital, repeated in 4 days then repeated again for total of 3 times
with Prednisone wean daily PO (PO means "by mouth" in nurse/medical speak)over
the next month but he would not go for it. Then I tried IV form of Solumedrol to
be given PO and he didn't like that either so...but he was willing to do regular
Prednisone 100 mg PO pulsed on weekends so that's what I have.He said he does
this with his MD (Muscular Dystrophy) kids and they do OK on it so I think he
felt more comfortable with this protocol and had some working background with
this approach so he was willing to order it.I have no idea why MD kids get
pulsed steroids (don't have time to invest in researching anything other than
LKS!!!) If Thomas experiences lots of GI side effects I suppose we will have to
revisit that.

Thomas' speech improved on increased Keppra to 1000mg twice daily but then he
got a little to picky, antsy, hyperkinetic so we went back down to 500mg in am
and 1000mg in pm. That seems to be his best spot. Speech is good and not too
antsy.Keeping it there. I am still waiting for my hospital pharmacy to fill
prescription. I asked for it in 10 mg tabs on purpose so he could go lower on
weekend dosage if deemed necessary so they had to order me a bottle of like 500
tabs or something ridiculous like that.Means he will have to take 10 tabs each
day but he does fine with pills. They are small tabs.

Filling Dexedrine also but probably will not trial that until right before
school starts. Our experience with stimulants has not been good so
far....hopeful, but not too overly optimistic.We'll see...my Thomas also has
attn, focusing and distractability issues (major issue for functioning in
regular classroom. NOT ADHD, just ADD.)More like central auditory comprehension
(CAPD)issues and executive functioning issues per IEP team, sort of like central
auditory processind disorder more than true ADD.Would love for him to have the
CAPD test that they do in sound proof rooms but it has never been recommended by
any of his docs and I've that read not that many places have equipment and
personnel trained to do it.Only large university centers. I will keep that in my
back pocket for future use!!

We, too, have a few little camps coming up at the Rec center so I may hold off
for a few weeks before beginning.So, yes we may very well comparing notes at the
same time.Say our prayers that it works!!!

Take care...good luck with your Tom and new treatment.

Sharon

--- In LandauKleffnerSyndrome@yahoogroups.com, "Suzanne" <iverus@...> wrote:
>
> Sharon,
>
> Are you doing oral Solumedrol, or another form of prednisone? Just curious.
Dr. Rossignol has found that orally given solumedrol (which is meant for IV
delivery) creates fewer side GI effects, so that's what we're trying. We'll
probably start next weekend - Friday afternoon and Saturday evening.
>
> We have seen some speech regression with my son and there could be numerous
causes, but I'm considering valium as a possible cause. I think a more likely
suspect is that his dose of lamictal is too low. I'm sure that's why we were
seeing night tremors. Dr. Teasley said that after we get the predisone on board
for a few weeks we can consider raising lamictal again - though Tom failed his
last trial of dose increase due to severe mood problems. I'll cross that bridge
when I come to it but we may ultimately be due for an augmentative AED like
neurontin or keppra, or a complete change. Yuk. Lamictal has worked so well for
him I don't look forward to a change.
>
> I find the information about dexedrine interesting. It's really the best, most
sophisticated of the stimulant medications for attention problems (ritalin is
hands-down the worst, and most common unfortunately). The speech/aphasia
information is tantalizing. I'm going to put that in my back pocket for future
reference - my son has terrible attention problems (primarily distractibility).
>
> I bet we'll be starting prednisone about the same time - it should be
interesting to compare notes!
>
> Suzanne
>
>
> --- In LandauKleffnerSyndrome@yahoogroups.com, "cgibson91" <cgibson91@> wrote:
> >
> >
> > Hello to all my "LKS Mom Friends",
> >
> > Well, appt went better than expected...I got the prescription to start
> > pulsed steroids!!!! Had to be patient, diplomatic and use all my
> > "clinical wiles" but I got it done! He is using Chez' pulsed protocol at
> > my suggestion...gave him the research. We are going with the max dose of
> > 100 mg Prednisone by mouth to be given every weekend for 10 weeks. I
> > gave him my line of being "100% convinced he has LKS and either I am not
> > doing a good enough job to convince you or you are doing a good enough
> > job of convincing me otherwise." I told him about Thomas' speech
> > sounding like the teacher on Charlie Brown cartoons in late 2005/ early
> > 2006 and describing it to the Dev Peds that way lonnng before I ever
> > knew about LKS.I later read in Stefanotos LKS research (one of the files
> > on this site) that he described speech in one of his patients the same
> > way. Told him that was the final nail in the coffin for me besides
> > everything else fitting. I asked him what his working diagnosis was
> > prior to this discussion and he said ADD, LD. Right, ADD that does not
> > respond to 3 stimulants trialed without him "flipping out" within 10
> > days (all at the lowest dosages available)... did not leave him much
> > wiggle room on what to do about that.Yeah, ADD is one of his symptoms of
> > LKS but not his sole diagnosis. LD has never been shown in ANY of his
> > psychoeducational testing OR ELSE the school would be using that as his
> > qualifying IEP diagnosis instead of what they are using which is
> > "Speech/Language Impairment." Can't throw Autism at him because he is
> > ADOS negative. Told him I know we are late to diagnosis...he had never
> > seen him during the early stages of this change and we are 5 years into
> > it. Told him I was not interested in IVIG nor long term 6 month to 1
> > year daily steroid treatment due to side effects of weight gain etc. but
> > that pulsed doses of steroids needed to be considered. I told him I was
> > not 100% convinced it would change the picture or work due to lateness
> > in treating symptoms but needed to be tried. He agreed that 2nd 24 EEG
> > on Keppra was much improved and even better than the "short" 1 hour EEG
> > without Keppra. He was resistant to changing to Klonopin at bedtime as
> > he thought he would have speech regression. Saw no benefit to adding it
> > to Keppra as EEG looked "pretty good" at 500mg twice a day and we had
> > increased to 1000 mg which should have taken care of remaining spikes.
> > He likes Keppra and its' safety record so I didn't fight that battle. I
> > will agree that increased dose in last month has improved his speech
> > although behaviors not improved (perhaps a little worse). He gave me
> > prescription for Dexedrine 5 mg (older stimulant) to try prior to
> > agreeing to steroids. I was sort of excited about this as I have read
> > some other research about using dexedrine in stroke patients that suffer
> > from aphasia and it has been very beneficial. He was giving it as he has
> > seen this work well in children for focusing and attn that do poorly on
> > all the other stimulants...not sure if he is even aware of the research
> > regarding use in speech in stroke patients. We are going to hold off on
> > this until after steroid trial. I'll share that research with him next
> > time...supposed to monitor BP, call him in 2 weeks and return in 5
> > weeks. WOO HOO ,WOO HOO, WOO HOO!!!! Got 'er done...has taken me since
> > November '08 (1st appt with Neuro) so keep the faith and keep fighting
> > if you know you are right and your child meets the criteria. Neuro still
> > has not admitted he is LKS but I will continue to pester him for
> > diagnosis until he gives me a prescription that states "LKS" on it. We
> > are being provided the treatment so that's all I care about. Has not
> > denied it outright. Really just think these docs don't know about this
> > disease as it is so rare and it takes awhile to convince them and you
> > must educate them on how to treat it!!! This is just so rare that most
> > practices only see 1 or 2 cases in their careers.
> >
> > NOW...everyone pray that steroids work!!!
> >
> >
> >
> > Take care, thank you to everyone who has read my venting and encouraged
> > me to go on!
> >
> > Sharon
> >
>