Lennox Gastaut

CDC funded page

Not a CDC funded Page

Hello, I am new to this sight. I came here trying to find some help. I am a caretaker of a 16 year old girl who has lennox gastaut syndrome, is blind, and mentally retarded. The problem is that I don't know what I can do to keep her occupied. Her mother does not know what to do either. She basically just walks her around and continuously switches activities every couple of minutes. We do not know how to keep her attention at all. She cannot talk or see, but she can hear. The activities that her mother does with her are just walking her around, rocking her on the recliner, letting her play the piano, listening to music and books on tape, and eating. She gets bored with these within a few minutes and gets very aggravated if the activity is not changed. Does anyone have ANY ideas as to what we can do with this child? She seems to be just existing and we want her to have some purpose in her life.

Comments

Re: RE: RE: RE: Lennox Gastaut

Submitted by katievance on Thu, 2009-10-01 - 20:52

I am trying to find a Doctor for a friend that I go to church with. He is 34 with Lennox Gastaut.We live in Charleston WV. Distance doesnt matter. I had thought Johns Hopkins would study it, but so far we havent found a Dr. who knows anything about it. Of what I know about him he is in a wheelchair,communicates by blinking a certain amount of times,and he use to eat whatever his mom could grind up. But now his brain is starting to forget to remind himself to swallow so he hasnt been eating as much. He isnt to vocal. He has probably atleast 50 partial seizures a day. I'm trying to say the best I know about the condition (which isnt much)I really would like to try to get him some help. I think someone said Johns Hopkins. I would appreciate if anyone can reccommend a DR to me . God Bless you

RE: RE: RE: RE: Lennox Gastaut

Submitted by Elaine280 on Fri, 2005-02-25 - 01:57

Hi, my son Scott who's 3 has just been diagnosed with Lennox Gastaut Syndrome. His seizures started off with smal jerks, nodding of the head and grew in size until he was falling over and happening many times during the day.He's now on 2 medications a day, the seizures have eased off and he has absence seizures now with a nod of the head but they are not happening as frequent. We've been told he'll probably build up a tolerance to the drugs and they might come back. Just glad at the moment that his drop attacks have stopped as we were getting really worried he was going to hurt himself.He's in nursery 3 days a week and they've already brought it to my attention that he might need extra help. He's never spoken and we get the odd "bye" but that's about it. I've been given exercises by a speech therapist to sit down with him but to be honest I can't sit him down long enough to do anything with him, the only time he's still is when he's asleep!! Our house also looks like a bombs hit it, he just moves from toy to toy and has started to be naughty just to get our attention!!He seems to understand everything we say to him and does things we ask him to but he can't communicate back to us except for a shout of "hey" and pointing of his finger!!I'd like some advice please, some people are telling me it's just the behaviour of a typical 3 year old but I don't know, is it his condition that's making it harder?Thanks

RE: RE: RE: RE: RE: Lennox Gastaut

Submitted by Vanpiers on Tue, 2005-03-01 - 04:47

Dear elaine - I'm so sorry I took so long to answer but here are some websites, which I found extremely helpful when my grandson was diagnosed with Lennox-Gastaut syndrome. When you have read them please get in touch to tell me what you think and do they answer any of your questions?http://www.epilepsy.org.uk/info/lennox.htmlhttp://www.emedicine.com/neuro/topic186.htmhttp://www.ncbi.nlm.nih.gov/entrez/queryResearch article on ketogenic diet: http://www.epilepsy.com/articles/ar..._1063751481.html