New Member- Child with Lennox Gastaut Syndrome

[alepatmat]

Hello Everyone, new here.
I am excited to be here.
My son, who is 6 has Lennox Gastaut Syndrome.
It has evolved from Febrile to Generalized to this.
Just wondering if anyone else has a child or someone they
know that has this. I have read that it is a progressive
epilepsy, and he is already showing mild retardation.
I have also read that they have gait disturbances, does that
mean that they lose the ability to walk, or just become unstable?
Anyway, any info is appreciated.
Alepatmat

[Mike Weins]

Hi alepatmat and welcome to BrainTalk :)

You will get more replies if you ask your questions in our Epilepsy Forum (http://brain.hastypastry.net/forums/forumdisplay.php?f=144) <---click

[linniec]

Hi alepatmat and welcome to BrainTalk :)

You will get more replies if you ask your questions in our Epilepsy Forum (http://brain.hastypastry.net/forums/forumdisplay.php?f=144) <---click


Alepatmat,
Please also try our Child Neurology Forum (http://brain.hastypastry.net/forums/forumdisplay.php?f=115) <---click


Linnie
"beyond a wholesome discipline, be gentle with yourself." Desiderata

[RathyKay]

I'd also recommend cross-posting over on the Child Neurology forum (http://brain.hastypastry.net/forums/forumdisplay.php?f=115). Child Neuro has a more diverse group (cerebral palsy, hydro, etc., including epilepsy). Lots of us cross-post on two or more forums. The epilepsy forum (in general) will give you an adult's perspective of having epilepsy. Child Neuro will give you a parent's view of their child's epilepsy. And with the CP parents, you can learn about braces, walkers, and other items that may help your son walk longer. I'm the "nut case" ;) that's trying dietary approaches to controlling my son's seizures.... something else for you to try.

I guess I thought only infantile spasms progressed to LGS?

[jcc]

Welcome! Here are a few things I've bumped into about LGS and diet in my research about gluten sensitivity that may worth reading/considering~

Miracles still happen (http://www.go.co.za/2003/04/17/news/DMIRACLE.HTM) (on Lennox-Gastaut Syndrome/ gluten, casein, sugar)


From:
Is the prevalence of celiac disease increased among epileptic patients? (http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2003000300002&ln)
PRATESI, Riccardo, GANDOLFI, Lenora, MARTINS, Rita C. et al. Is the prevalence of celiac disease increased among epileptic patients?. Arq. Neuro-Psiquiatr. [online]. 2003, vol. 61, no. 2B [cited 2006-08-23], pp. 330-334. Available from: <http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2003000300002&lng=en&nrm=iso>. ISSN 0004-282X. doi: 10.1590/S0004-282X2003000300002.

"Taking our findings into account and reviewing previously published studies, some general observations concerning the association between epilepsy and CD can be brought forward:

(a) in many epileptic patients CD is asymptomatic or disclose only mild or atypical features14,15;

(b) epilepsy without cerebral calcifications, may be an early manifestation of CD, with calcifications developing later30;

(c) early identification and treatment of CD may reverse the tendency to epilepsy and probably to the development of calcifications16;

(d) seizures seen in association with CD are frequently difficult to control and, at least in some cases, this is due to poor AEDs absorption resulting from the concurrent enteropathy17;

(e) if CD is not precociously diagnosed, epilepsy will have propensity to progress in severity, evolving to a degree in which, even the introduction of GFD will fail to ameliorate the clinical picture17;

(f) although generalized forms of epilepsy are seen that, at times, rapidly evolve to a severe and progressive encephalopathy suggestive of Lennox-Gastaut syndrome31, partial complex seizures with involvement of the occipital lobes are more frequent16.

In conclusion, a greater attention is needed to the possible coexistence of CD in epileptic patients. Although a systematic screening for CD in all epileptic patients seems to be, at the present time, neither practical nor cost-effective, it seems reasonable to screen at least all patients with complex partial seizures, especially when associated with occipital paroxysms and resistance to drug therapy."


Cara