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Lennox-Gastaut

Wed, 04/06/2005 - 19:16
Topic: Family & Friends
I am the sister of a 20 year old male with Lennox-Gastaut syndrome. I am looking for other adults with this syndrome and their familes. Please contact ncreel@dixie-net.com with any information. Thanks for your help.-a-

Comments

RE: Lennox-Gastaut

Submitted by Ted_Jacqui on Tue, 2004-12-07 - 00:00

Hi a,

I'm not the person you were looking for in your post.  But I'm hoping you can help me.  My 2 year old son Rylan has been having seizures and one of the possibilities the doctor is considering is Lennox-Gastaut Syndrome.  I just posted a message on the general board a few minutes ago.

Anything you would like to share with me regarding LGS would be most appreciated.  If nothing else hopefully this bumps your post up and maybe someone out there will be able to help you.

Thanks,
Jacqui

 

 

 

 

Hi a,

I'm not the person you were looking for in your post.  But I'm hoping you can help me.  My 2 year old son Rylan has been having seizures and one of the possibilities the doctor is considering is Lennox-Gastaut Syndrome.  I just posted a message on the general board a few minutes ago.

Anything you would like to share with me regarding LGS would be most appreciated.  If nothing else hopefully this bumps your post up and maybe someone out there will be able to help you.

Thanks,
Jacqui

 

 

 

 

RE: Lennox-Gastaut

Submitted by mistletoe44865 on Fri, 2005-02-11 - 17:54

Hi!  I am a 33 year old sister of a 36 year old sister who has suspected Lennox-Gastaut.  I am just finding out what is really wrong with my only sibling.  My sister is severly mentally handicapped.  She has been having seizures since 4 years old.  Over the years she has progressively gotten worse.  Her mental capacity is 9 months at the last evaluation.  She was born in 1968 and not much could be diagnosed back then.  She has lived in a facility since she has been 13 years old.  It is very hard to be "normal" and watch your sister deteriorate slowly and steadily.  She does not communicate any more, she does not walk anymore and wears diapers.  I surely hope that your brother is not in the same predicament that my sister is in.  I would love to hear your story.  Thanks for listening to mine.   Missy

 

Hi!  I am a 33 year old sister of a 36 year old sister who has suspected Lennox-Gastaut.  I am just finding out what is really wrong with my only sibling.  My sister is severly mentally handicapped.  She has been having seizures since 4 years old.  Over the years she has progressively gotten worse.  Her mental capacity is 9 months at the last evaluation.  She was born in 1968 and not much could be diagnosed back then.  She has lived in a facility since she has been 13 years old.  It is very hard to be "normal" and watch your sister deteriorate slowly and steadily.  She does not communicate any more, she does not walk anymore and wears diapers.  I surely hope that your brother is not in the same predicament that my sister is in.  I would love to hear your story.  Thanks for listening to mine.   Missy

 

RE: RE: Lennox-Gastaut

Submitted by lstanton on Sat, 2005-03-19 - 22:35
HiI am a 26 year old and i have a 30 year old sister with Lennox-Gastaut syndrome. I believe that my sister was diagnosed with this disorder at around 18 to 20 months of age. My mom said that she knew something was wrong long before this diagnosis was made. She couldnt grasp things with her hands and something just seemed amiss. My sister has been mentally handicapped for my entire life. Her mentality is roughly around that of a 4 or 5 year old, but there are times when she seems so much wiser than that. She has had many ups and downs and has been close to death a few times. She has recently been diagnosed with Celiac Sprue (a genetic disorder which is a severe allergy to gluten). This has caused a major revamp in her already limited diet. However, this change in her diet has really brought a change for the better with her seizure control. She is much more alert and able to hold a conversation. My sister is doing very well these days although she is no longer walking and is confined to a wheelchair. I have so many stories to share if anyone out there is interested or needs help or just plain needs to talk. I am also interested in comparing stories. Feel free to contact me natures_i@yahoo.com

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