Steve from the UK

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steveg

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Hello all,

I would like to say what a great forum you guys are running here, its full of very useful information.

I have a girlfriend who has a daughter aged 7 with lennox gastaut syndrome, I am here to find out more information about the condition and ways to help my girlfriend and her daughter.

Will look forward to speaking to you all in the near future!


Best regards,
Steve
 
Hey Steve - WELCOME
Thanks for you kind words about our special place here. We are glad that you decided to join us. Your GF is a lucky gal, as is her daughter.

My daughter began having seizures at the age of 14, and it certainly was a wake up call.
 
Hi Steve,

and welcome to CWE. I'm sure you'll find the nooks and crannies here full of information here, as Mr B, our host, has built us an AWESOME home.

Why don't you specifically check out the Library, Kitchen and Nursery? All 3 have plenty of information, but the Nursery is an area where parents meet/greet each other with things that they do to help their kids, etc.

Also, you have another INVALUABLE resource here--DutchMom, one of the supermoderators (she lives in Holland). Her 10 year old son, Joni, HAS Lennox Gastaut Syndrome, like your GF's daughter. As a matter of fact, he was in a Dutch magazine recently. She also moderates a Dutch E and special needs forum, so there will plenty that you can learn from her about LGS.

Welcome aboard. Make yourself known. I'm sure DutchMom would not mind if you sent her a PM (private message) if you wanted to communicate privately....I'll let her know that you might be doing so.

Ask all the questions that you want. We'll do the best that we can to answer them......if we can't we can usually point you in the right direction to get them answered. Feel free to vent, too, if you need too. That's what the Padded Room is for. Trust me, we've all been there a time or two, I think.

Take care,

Meetz
:rock:
 
Welcome here on CWE Steve,

My special needs boy (he has just turned 10 TODAY :)) was diagnosed with LGS at age 1,5. Since then I've met many parents and kids with LGS, live and on the internet, Dutch and foreign. Even in the UK because he's treated with (only) the ketogenic diet for over 5 years now. There's no better soure on the diet than www.matthewsfriends.org in England.
My son Joni's story is on there in English http://site.matthewsfriends.org/index.php?page=joni-s-story

Even if your girlfriends daughter isn't on the ketogenic diet, the MF members forum is recommened to you. Many wonderful parents, great parent support and knowledge there. LGS tends to react bad on medication so many parents with LGS kids do try this diet. I've met the Brittish moms behind MF at their keto congres in 2007. Great women! Several of them do have a kid with LGS. On their forum we discuss far more issues concerning LGS and childhood epilepsy (syndromes), not only the ketogenic diet.

This forum is a good resource too: http://infantilespasms.com/forum/
It's about Infantile Spasms but IS often develops into LGS and therefore you'll find members with LGS-kids and lots of useful info there.

Is your gf's daughter treated with meds now? Has she considered trying the diet? It's no easy diet but with LGS the diet gives far more better results than medication so it's worth a try. Joni has 80-90% seizure reduction and a > 70% better EEG since the diet!

Tomorrow we'll take of for a 2 weeks vacation so I'll only pop in here occasionally. I'll be back in august. Feel free to PM me with any questions.
 
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Thanks for the welcome and information. Do you have anymore information on EEG? I know a little bit about it but would like to know more.


Thanks in advance,
Steve
 
Hi Steve,

The typical EEG pattern for LGS shows diffuse slow spikes and waves complexes on the background.
The EEG usually has abnormal background activity, slow spike-waves <3 Hz and, often, multifocal abnormalities.
During sleep, bursts of fast rhythms (10 Hz) appear.
It's an EEG pattern which usually developes in time and with aging.

Meet part of my 'library' on LGS.

http://www.icongrouponline.com/health/Lennox_Gastaut.html

http://www.lgsfoundation.org/

http://neurologia.rediris.es/congreso-1/conferencias/epilepsia-8.html (text is in English)

http://www.specialchild.com/archives/dz-017.html

http://www.epilepsyontario.org/faqs/seizures/lennox.html

http://www.epilepsy.org.uk/info/lennox.html

http://www.emedicine.com/NEURO/topic186.htm

http://professionals.epilepsy.com/page/lgsynd_criteria.html

http://www.ncbi.nlm.nih.gov/sites/en..._uids=11071139
 
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