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Hi Terry,
My 9yo son has CSWS and it is only in the past 3 years he has been eating and drinking "normally"; since he has been on steroids and is able to function so much better, in all areas.
My son was full term, but unable to breastfeed as neither his mouth area nor his arms seemed "connected" to the rest of his body. We had many eating problems as he wasn't able to pick up food and bring it to his mouth, for many years, and his mouth movements would seem to develop during his toddler years only to to stop again, back to square one.
Oro facial seizures and seizures affecting the arms became obvious at age 3, but we saw something at age 6 months that was a seizure that we didn't understand at the time, so epilepsy was suspected but not understood till age 3.
In my experience, yes, eating/mouth movement problems were definitely a major symptom of something wrong
with my child - observations dismissed for many years, yet when the seizures became obvious the mouth area was always affected; perhaps explaining that if my son was having overnight seizures that were missed (the ones we have seen are very subtle) his mouth area would be fatugued the next morning and that's why it seemed as his chewing ability just disapppeared literally overnight.
We have only seen a major improvement with the use of Prednisolone steroid and Zarontin (Ethosuximide) - the use of Zarontin stopped the dribbling we had seen for 4 years. We suspected the dribbling was an indication of something wrong (absences?), and when we have lowered the Zarontin dose we see increased dribbling again.
I'm not experienced with Klonopin to comment on the effects of using the med, but my son is better managed with the current mix of meds, and the mouth area too can clearly function better, as definitely does
appetite.
Lee
Terry Street <terryst2@...> wrote:
Jenn,Since Kyra started the Klonopin for the LKS she stopped eating. She stopped asking for food, stopped asking for something to drink. We stopped the Klonopin and started Lamictal, but she continues to not eat anything by mouth. She is drinking a little bit, but nothing like what a six year old would drink in any given day.We had no choice but to go to feeding tube. For about 5 weeks we used the ng tube at night (through the nose) and she would get her calories via the formula. Just last week we switched to the stomach tube, and she continues to only get her calories via the formula.I guess what I'm looking to find out if others had experienced anything similar. Since LKS is associated with speech regression, I'm wondering if the mouth muscles for chewing/swallowing are also affected?Thanks for your help.Terry----- Original Message -----From: Jennifer GagerSent: Wednesday, September 05, 2007 9:20 PMSubject: Re: [LandauKleffnerSyndrome] Re: Adults w/LKS Terry,
My son has never been diagnosed with LKS, but what he has (developmental aphasia) is the closest thing to LKS that I can find ANY kind of support/information. Hope this makes sense. I just skim these emails, but when I saw you mentioned "feeding problems" I had to ask about it. What do you mean exactly? My son hardly eats anything (he just doesn't LIKE anything). He has steadily gotten worse. Anyway...just had to ask if you could clarify this. :o) The only meds that my son is on right now is Imapramine (for Anxiety issues) but it actually did a lot for his ADD.
Thanks! Jenn
On Sep 5, 2007, at 7:59 PM, Martha wrote:
Terry - The prednisone was our miracle. My daughter, Hannah was on
pred at age 7 (She is now 10)for about 9 months ( Iwanted it longer)
it has worked for her with only massive weight gain as a side
affect. As we weaned the pred we added lamictal and clonazepam at
night. She has not regressed. She has most of her speeach back just
word finding problems and major reading issues. I would do the pred
again in a heartbeat!! - Martha
--- In LandauKleffnerSyndrome@yahoogroups. com, "Terry Street"
<terryst2@...> wrote:
>
> Sam,
>
> I feel our neurologist is just playing a guessing game with
meds for Kyra. First we tried Klonopin, she was on that for 5 mos,
and continued to have problems, as well as an increase in her ADHD.
Now, he wants to try Lamictal before we go with the
corticosteroids. We are still researching the corticosteroids and
are worried about the side effects.
>
> Sadly, Kyra has continued to have feeding problems, lost
nearly 10 pounds and we had to insert a ng tube each night for
feedings. Just last week that was switched to the more permanent
stomach feeding tube.
>
> Since starting Klonopin, Kyra hasn't eaten. We are searching
and searching for any information we can find on children with LKS
and feeding issues. If anyone can help, I'd really appreciate it.
In the meantime, the only nourishment she receives is through the
feeding tube.
>
> We are seeing a tremendous amount of ups and downs on a day to
day basis. This includes her speech, her adhd, her behaviors.
Eating just seems to have completely been lost.
>
> If anyone has any thoughts, please email me!!
>
> Thanks,
>
> Terry in MD
> ----- Original Message -----
> From: Sam
> To: LandauKleffnerSyndrome@yahoogroups.com
> Sent: Sunday, September 02, 2007 5:40 PM
> Subject: [LandauKleffnerSyndrome] Re: Adults w/LKS
>
>
> Hi,
> My son was diagnosed at age 3 and a half, he has just turned 7.
We
> tried the Prednisolone after his diagnosis, and this cleared his
EEG.
> As we reduced the dose, the spike wave activity returned and
could
> not be controlled again, even after upping the dose again.
> What I am saying is that most children only get one chance with
> Prednisolone. If it is reduced too quickly, it may not work
again,
> even if it had previously.
> Tai was diagnosed in Paris by a Professor Dulac. His treatment
of
> choice is another steroid, Hydrocortisone. He also recommends
that
> the treatment should last no less than a year. Of course he is
very
> aware of the side effects, but he also knows how devastating
this
> illness is if it isn't treated. There is a much smaller chance
of a
> relapse if the treatment lasts for a year. Tai was on
Hydrocortisone
> for 2 and a half years, his EEG cleared again, and he has slowly
> regained his language. We are so pleased with his progress.
> I'm sorry I can't be of more help with the IVIG, I don't know
much
> about it.
> Does your neurologist have much experience in treating LKS or
other
> related disorders? I think its very important that the neuro has
> successfully treated it before.
> If you would like my neuro's email address for advice, please
let me
> know, he is happy to respond to other parents.
> Sam
>
Mum to 9 year old CJ: Continuous Spike Wave Syndrome, Autism, Intell Disability. Diagnosed with Autism at age 2, and with CSWS at age 3.5, but was developmentally delayed from a birth. No known cause for these conditions. Medications tried: Epilim, Lamictal, Steroids, Frisium, Zarontin. Steroids have been most useful, but have caused bone thinning.
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