Lennox Gastaut

RE: Lennox Gastaut Syndrome Vanpiers - in England

Submitted by Vanpiers on Fri, 2005-03-04 - 11:54

Hi Elaine - I'm so pleased you are getting help with your son's condition. When my grandson (aged 3) was diagnosed with Lennox Gastaut Syndrome I couldn't beleive what I was reading when I got home and did some research. Now we've started to come to terms with it and are doing all we can to make sure he continues to have as good a quality of life as he has always had. He also attends nursery and was having grand mals both in the morning and one late in the afternoon. We then noticed he was having absence seizures as well as seeming to be hyperactive and then still a little later he was lethargic or moody. He was given Epilin and from then on in he seemed to get more jerks, absences, twitches, a little aggresive at times, moody but no grand mals. As these other seizures started increasing along with a shorter than average attention span, together now with drop seizures he was put on Clonazapan as well. From then on, he seemed like a zombie in the mornings and started looking as if he was dragging his leg. He is back in nappy pants but does ask to go for a po. Having said all this he does have extremely good days and you would think there was nothing wrong. He speaks well, has a photographic memory and even when he's had a particularly bad drop seizure day, he'll have a good cry, dust himself down and then carry on as if nothing has happened. He goes to nursery full-time and although he now wears a baseball cap to protect his head, it's still heartbreaking to see the nasty bruises on his little face. Just a couple of days ago he fell while running at the nursery and they don't know whether he had a seizure, or whether he just fell over his feet, but it was yet another trip to the hospital to determine whether he had broken his nose. My daughter was called out of work again and this is all very stressful for her as she is only a young mum of 24. I collected him from nursery after dinner the next day, to give him a bit of a break and I could have wept when I saw his nose which looked terrible (but thankfully he had not broken it.) Even so, children are so relilient and he was so thrilled to see me, it was just as if nothing had happened to him, to him anyway. While he was with me he had two very fierce jerks - one where he was thrown back (but thankfully he had his helmet on) and one where he was flung forward. He understandebly cries each time and I often wonder if there's something more hurting him in his head during the drop attack or even after the seizure. I just wish I could take the hurt away.I have a suspicion that Jay may have got the syndrome as a result of him being diagnosed with diabetes. My daughter didn't know he was diabetic until one day she was called to nursery from work and he was rushed to the hospital. That day we nearly lost him as his body was shutting down as he was lapsing into a coma - one which he would not have woken up from. He was only 2 years old and although we felt guilty, we were told not to blame ourselves as it often takes a life threatening crises like the one Jay experienced before diabetes is ever suspected. As well as being insulin dependent, he has now been diagnosed with LGS, which I think is as a result of the trauma he went through when he nearly died.This too makes me wonder if his diagnosis of LGS is not symptomatic of both the trauma and metobolic changes to his system this must have created. After all the trauma of a little body shutting down must've created all sorts of complications. We came to terms with the diabetes just as Jay did, or so we thought but obviously we now think there must've been some other damage - chemical maybe - who knows. Having said that the usual eeg and cat scan came up with no scar tissue or lsesions on the brain - nothing in fact - apart from of course the waves that indicate LGS.He has now been put on Keppra with the hope that he can come off the klonazapan as we are not happy with the way he seemed drunk and zombie like in the mornings. So basically he will remain on Eppilin and Keppra, for as long as they work I suppose. As he was being treated by a diabetes specialist, who didn't specialise in Epilepsy, by the time my daughter ranted and raved to everyone she needed to, (NHS direct etc.) as well as finding out her rights to see an epilepsy specialist before the 6 months appointment she was unbelievably given, it turned out that Jay had been given an adult dosage of the Clonazapam. By the way instead of a 6 month wait, we were seen within a day or two by the specailist who said he expected to see a sub normal child and was surprised to see a child who was speaking and communicating so well. Having said that though he also said he could not take him off the Clonazopan until the Keppra had become well established and then they would proceed to wean him off the Clonazopan to give him a quality of life. Actually it has been a week now since we have seen the apileptic specialist and we see him again in about (hopefully) three weeks time - but oddly enough Jay seems to be coping with all three medications and is coping better than he was. He is still having 2 to 3 drop seizures though, which are very scary as these can cause awful injuries and you can't wrap them up in cotton wool for obvious reasons. He walked to the library with the other nursery children just yesterday to choose some books as their new library tickets had arrived and he chose 4 books. When he cames home he excitedly told his mum all about it. He was thrilled. His mum sat down and read them to him and then I phoned to see how his day had been he excitedly told me all about it too. He still can't understand that showing the books to the phone does not enable me to see them. Lol.These are such special times in his and our lives and even though he has nasty bruises he still lives life to the full by having a good old sob and then a cuddle to make it better. He then picks himself up and carries on and so we must do the same, however much it hurts.As for the mediation, which is a bit like the chicken and the egg, well I'm a big believer in this Ketogenic diet and when I see the specialist again I'm going to ask what can be done for Jay. It is complicated and even more complicated for Jay as he needs to have more carbohydarates, which the Ketogenic diet doesn't have. Anyway I'll keep doing the research and hopefully will get a response from others on this community website.Elaine, we live in England, the nearest place you may recognise is Middlesbrough in the Tees Valley - used to be called Teeside. I actually live in Guisborough the ancient capital of Cleveland. My daughter lives in Redcar with her son Jay. Please contact me if you want to talk further, I'd be interested to know if you've thought of what's going to happen about school etc. as we are now wondering?Love to you all