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Lennox Gastaut
Sat, 03/05/2005 - 06:32Hello, 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 mistletoe44865 on Mon, 2005-02-21 - 17:26
Jessi,
Hi! My sister had all of her skills until she was 4 years old. She was slow to open her eyes and to eventually walk and potty train, but she did all of these even for a while after her seizures started. She was born in 1968, so not much was known or done for her until she was 10 or 11. She now has the mental function of a 9 month old. She will be 37 in July. I don't know if it is all of the medications that she takes or from all of the grand mal seizures that she has had but she has the possible diagnosis of LG or Heller's. I truly think that she has LG. I wish you so much for your son. We at least live in an age where there are medical break thoroughs daily. And to also have all of this support and info available. Good Luck!!
Missy
Jessi,
Hi! My sister had all of her skills until she was 4 years old. She was slow to open her eyes and to eventually walk and potty train, but she did all of these even for a while after her seizures started. She was born in 1968, so not much was known or done for her until she was 10 or 11. She now has the mental function of a 9 month old. She will be 37 in July. I don't know if it is all of the medications that she takes or from all of the grand mal seizures that she has had but she has the possible diagnosis of LG or Heller's. I truly think that she has LG. I wish you so much for your son. We at least live in an age where there are medical break thoroughs daily. And to also have all of this support and info available. Good Luck!!
Missy
RE: RE: RE: Lennox Gastaut
Submitted by jessiprince on Mon, 2005-02-21 - 08:19
My 11-year old son also has lennox-gastaut. He was developing normally until he began having seizures at three. Within a year or so we began to see some delays. His development since then has been very slow, but he has not lost any skills. He is more like a 4 or 5 year old. Although he has been having seizures for 8 years, it wasn't until we recently changed neurologists that any one mentioned that it looked like LGS! I am often grateful that this all started after he was already speaking, walking, toilteting,etc. I am also curious to know if these other children lost these skills or never had them?
To Amy Q, don't be discouraged! I would like to talk to you and any other parents, as I have never spoken with a nother parent of a child with LGS.
Please feel free to email me at jessiprince@msn.com
Thank You,
Jessi
My 11-year old son also has lennox-gastaut. He was developing normally until he began having seizures at three. Within a year or so we began to see some delays. His development since then has been very slow, but he has not lost any skills. He is more like a 4 or 5 year old. Although he has been having seizures for 8 years, it wasn't until we recently changed neurologists that any one mentioned that it looked like LGS! I am often grateful that this all started after he was already speaking, walking, toilteting,etc. I am also curious to know if these other children lost these skills or never had them?
To Amy Q, don't be discouraged! I would like to talk to you and any other parents, as I have never spoken with a nother parent of a child with LGS.
Please feel free to email me at jessiprince@msn.com
Thank You,
Jessi