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Lennox Gastuat Syndrome
Sat, 02/26/2005 - 14:20Topic: Family & Friends
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, eyes rolling upwards and they grew in size until he was falling over and happening many times during the day.He's now on 2 medications a day (Epilim and Clonazepam), 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" and a few other words 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: Lennox Gastuat Syndrome
Submitted by Vanpiers on Sat, 2005-02-26 - 14:20
Hi Elaine - My grandson has just recently been diagnosed with LGS and has been on Epilim and Clonazepam. He speaks very well and has a good vocabulary and is quite intelligent. However, he was put on Clonazepam in order to try and control his seizures which were increasing. Since the Clonazepam, my daughter, my husband and I and the nursery staff have been extremely concerned with the increase in seizures of varying kinds and his lack of eye hand coordination. Not only that but he has appeared drunk and has not been able to even climb the stairs or at times walk properly. Also his behaviour has become agressive on occasions. Because he was having so many seizures - for example - I picked him up from nursery the other day and was shocked to see he had three awful bruses on his face as a result of him just dropping. We have had him in accident and emergency as he has been having more dropped seizures and banged the back of his head with such force we were worried. He now often wears a helmet (baseball one) to protect his head, but we are not fitting him a face shield yet as this my daughter finds too much to take at the moment, and she's worried about the effect this will have on him with other people. The nursery to which he goes have acquired funding so they could employ extra staff so Jay can have a 1 to 1 carer. The story should have started a bit differently to this but I have to go out now, but I will get back to you soon. Don't be frightened and don't despair as the story does get better. Must go will write soon and finish story as I know what you are going through.Maz