Lennox Gastaut

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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: Lennox Gastaut

Submitted by Nanny Pat on Sun, 2007-03-04 - 15:35

Hi I am also new to this site. My grandson Ben who will be 4 in May was diagnosed yesterday with LGS. His fits started in June06 following a trip to Australia with his mummy to see his grandparents and family. Until this point he had been and still is really above average intelligence though the recent level of multiple type fit activity seem to be taking there toll. Ben could hold a full conversation at 18 months. He could recite his alphabet, count and knew all his colours and shapes way before 2yrs. I did lots of reading on internet and did fear LGS was the cause but it always seemed to suggest that it normally happened to children who were slow to learn or brain damaged at birth. We are seeing the specialist tomorrow who due to the situation with Ben is still seeking underlying cause. Brain Tumour has been ruled out but they want to do some more neurological testing though his EEG showed text book LGS. Has anyone else started off like this. I really worry about the future. How can we keep him active and stimulated when the drop fits have him cutting himself, breaking his nose, smashing his teeth. We have now got a helmet but the specialist begs us not to use it?? Can anyone help. We are desperate

Re: Re: Lennox Gastaut

Submitted by Stephanie McClain on Fri, 2007-04-13 - 10:25

Hi. My son was diagnosed with infantile spasms when he was about 1 1/2 years old. He has been on numerous meds and nothing seemed to help. Couldn't find anything on MRI, PET scans . We were devastated because he was falling all the time and hurting himself. He had bruises all over his head and face. We got rid of our end tables and some more furniture. Put a gate up and just let him run around in the living room. We took him everywhere to get evaluated. We live in Tennessee. We went to Vanderbilt in Nashville, Emory in Atlanta (they dx him with infantile spasms), then we went to Dr. Chugani in Detroit. I then sent his medical records to Johns Hopkins. They only recommeneded the ketogenic diet and I was disappointed because I wanted my son fixed and I thought to myself, what could a diet do. Well, I called them and set up an appt. for starting the diet. Corey was having 20-40 seizures daily, was started on the ketogenic diet in January of 2007, we saw a difference in him before we left the hospital. He was admitted on a Monday am and discharged on Thursday afternoon. It has worked for us! He has not had any seizures at all. He is being weaned off of his zonegran, only 1 more pill to go. He seems that he is picking up more skills, but still not talking. I am wondering about the dx of autism. The diet is not hard at all!!! Don't let anyone tell you that it is. Johns Hopkins is where the diet was created and they really know what they are doing. They do alot of education for the families. It is scary at first, but now it is nothing. When I told our pediatrician that we were taking our son to JH to do the diet, her response was "it is just not practical and so hard to follow". Well, it is not practical watching your son have 20-40 seizures daily either. I was not looking for something practical anyway. It is not about me, I want to help my son. I think the younger the better to start the diet. Corey just eats what I put in front of him. I can see how it could be hard for a child that knows that he can't eat certain foods and tries to sneak food. There is a book that JH has out called "The ketogenic diet: a treatment for epilepsy". Please check into this. It has helped my son so much. E-mail me for any questions, I hope this was helpful. Please remember this....just because a person is a doctor, it doesn't mean that they are a GOD.....only you know what is best for your grandson...don't just stop at the first opinion you get if you are not satisfied....get several and see what happens. If I had listened to our pediatrician, Corey would still be having seizures. Stephanie