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lennoxgastaut · Lennox Gastaut Syndrome

Group Information

  • Members: 284
  • Category: Children's
  • Founded: Jan 2, 2004
  • Language: English
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Description

In loving memory of Ryan. Lauren, our thoughts and prayers are with your family.

Welcome to our group! If you are here, then most likely someone you love has been diagnosed with Lennox Gastaut Syndrome, one of the most severe forms of epilepsy. Neurologists and literature paint grim pictures as to the prognosis of our children, but there is much hope! Clinical trials are underway to find viable treatment options, as the usual line of anti-epileptic drugs do not offer much relief of our childrens' seizures.

If you are joining us for the first time, I hope that we can inspire you to seek alternative treatments if the current treatments are not working. I started this group because my son's neurologist told me that my son was "one of a handful" of kids in the world with Lennox Gastaut, and I was determined to find the parents of this "handful" to swap stories and ideas with, in an effort to better help our kids.....that "handful" has grown into over 285 so far! I have found this unique group of parents to be inspiring and full of hope.

Please join us in sharing information, neurologist referrals, and stories to support each other in our search for the best possible treatment options for our children!

-Sue Ellen






Message History

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2012 22 14 13 1 5
2011 97 45 220 35 12 20 12 11 4 39 21 2
2010 211 154 214 285 283 103 128 106 70 27 66 146
2009 52 49 108 70 84 69 77 124 116 201 202 107
2008 57 39 32 56 16 2 1 16 15 65 6 51
2007 104 55 28 27 18 36 41 62 31 74 48 51
2006 82 66 24 51 28 36 25 46 33 40 50 30
2005 18 57 31 35 9 35 35 57 1 7 46 54
2004 4 18 14 12 48 15 4 14 20 11 19 31
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