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 <---click

[linniec]

Originally Posted by Mike Weins

Hi alepatmat and welcome to BrainTalk

You will get more replies if you ask your questions in our Epilepsy Forum <---click

Alepatmat,
Please also try our Child Neurology Forum <---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/...lay.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 (on Lennox-Gastaut Syndrome/ gluten, casein, sugar)

From:
Is the prevalence of celiac disease increased among epileptic patients?
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