Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 Has Louie had an eeg recently? That's how they found s seizure type. He does something like that and they call them jerks. I will ask his grandmother the name of the and e-mail you again. God bless, Ruth moomoo19922000 wrote:Hello all, My son Louie has been having little episodes over the last couple of months,and i have been back and forth to the doctors and hospital with him.They keep putting it dovn to a virus and say it's unlikely to be epilepsy because he is on the upper most dose of Carbamazipine for his age and weight.Theysay it's febrile due to a tempreture. Would a virus last this long? and he doesn't seem poorly ,the doctors have said his throat looks slightly pink,but he seems fine. He had a n episode this morning,after three days of being fine.He knows when it is going to happen and gets very agetated and scared. He will try and bight anything that is close to him and makes very jerky movements throwing his arms up.He also looks like he is seeing things and will stare into space.He doesn't lose consiousness,and they are not like the usual febrile seizures he has had. I have seen the phrase " infantile spasms " on this site many times,what are these and are they just presented in very young babies???? Im trying to do a bit of detective work as im getting to the end of my tether with this.Seeing Louie so terrified when this hapens,his heart races when he has one!! Can anyone shed any light ??? Love to you all,From Mel and Louie (PMG)and epilepsy (years old)xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 From your description I do think these may be infantile spasms - I know does this sometimes and you are right it is so distressing as he is absolutely terrified. I do find that I can distract him out of a seizure at this stage by talking to him and trying to get his attention. I do think you have to push for an EEG asap. The throwing his arms up is quite a textbook IS movement - sometimes referred to as " jack-knife " . It may just be night terrors or myoclonic spasms without hypssrythmia (which is the really damaging brain pattern associated with IS) but you can only find this out with an EEG. Love to you and Louie. PS You don't say how old Louie is - IS is far more likely under a year and almost unheard of starting over 3. Spasms or epilepsy ?? Hello all, My son Louie has been having little episodes over the last couple of months,and i have been back and forth to the doctors and hospital with him.They keep putting it dovn to a virus and say it's unlikely to be epilepsy because he is on the upper most dose of Carbamazipine for his age and weight.Theysay it's febrile due to a tempreture. Would a virus last this long? and he doesn't seem poorly ,the doctors have said his throat looks slightly pink,but he seems fine. He had a n episode this morning,after three days of being fine.He knows when it is going to happen and gets very agetated and scared. He will try and bight anything that is close to him and makes very jerky movements throwing his arms up.He also looks like he is seeing things and will stare into space.He doesn't lose consiousness,and they are not like the usual febrile seizures he has had. I have seen the phrase " infantile spasms " on this site many times,what are these and are they just presented in very young babies???? Im trying to do a bit of detective work as im getting to the end of my tether with this.Seeing Louie so terrified when this hapens,his heart races when he has one!! Can anyone shed any light ??? Love to you all,From Mel and Louie (PMG)and epilepsy (years old)xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Hi , Thankyou for your reply.Louie is 9 years old ,so i guess that maybe he is too old to be having spasms ? although i know there is no textbook case to go on ,and every child is unique in his /her presentation of the condition. I got a call from school at 11 this morning,Louie was having a seizure and could i come straight away. When i got there he was laid out on the beanbag,sleepy eyed,but otherwise fine.He had been consious throughout the episode but had violent shaking of his arms and legs.As soon as i got him home he wanted to eat his lunch,and has been playing ever since.He doesn't seem hot,or unwell,appart from a runny nose,so im at a loss ! I think i will get him another apointment with his specialist,and insist he has an EEG done.He has only had one of these so far,way back in 1997 after he started having seizures.in your opinion,do you think they should be done on a regular basis ???I find it difficult getting answers from our doctors,Do seizure paterns change ? I know ,through my own research that hormones play a significant role in changes to seizures sometimes. I will let you know how i get on at the hospital. Love to you all, from Mel and Louie xx > >Reply-To: polymicrogyria >To: <polymicrogyria > >Subject: RE: Spasms or epilepsy ?? >Date: Mon, 27 Sep 2004 09:47:06 +0100 > _________________________________________________________________ It's fast, it's easy and it's free. Get MSN Messenger today! http://www.msn.co.uk/messenger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Louie is 9 years old ,so i guess that maybe he is > too old to be having > spasms ? although i know there is no textbook case to go on ,and every child > is unique in his /her > presentation of the condition. ***************** I guess with our kids anything is possible <grin> I know I've heard of older children with IS, but it is generally a reoccurance not a first time thing. I'm far from a medic, but I know with Jarret he started off with the myoclonic clusters....which were only identified after an eeg. The myo's REALLY do mimic IS amazingly close! Fortunately for Jarret they weren't IS. As it can lead to more difficulities...something he really didn't need on top of everything else. He had been consious throughout the episode but had violent shaking of > his arms and legs. **************** Jarret started doing that 3 months before his first tonic-clonic. His extremities are just twitching/jerking like crazy right? I asked the doc if he was practicing for them or something. <wry grin> As soon as i got him home he wanted to eat his lunch,and > has been playing ever since.He doesn't seem hot,or unwell,appart from a > runny nose,so im at a loss ! ************** I don't think you are at a loss at all YOU know what's happening with Louie....I'm thinking your specialists NEED to START listening to the resident expert....YOU! ,way back in 1997 after he started having seizures.in your opinion,do you think they should be done > on a regular basis ??? ************ I don't think they need to be done say, every 6 months...But!!! If things are changing neurologically it would only make sense to have it recorded....7 years, a heck of a lot can change in that time. And I think it is completly bizarre that the docs are brushing you off. Do you have a video camera? Borrow one if necessary and be armed with proof for the next visit. Pics are worth a thousand words. I find it difficult getting answers from our > doctors,Do seizure paterns change ? ****** hmmmmm. Good question!!! My first instinct would be to say yes they can change due to the various seizures. And as to whether the seizure is starting in one area -focal- or scattered -diffuse. But Jarret's have always been just one way so I really have no idea! I'm gonna have to ask myself. <grin> > I will let you know how i get on at the hospital. Love to you all, from Mel > and Louie xx ******** Please do. And try to get his " cold " <grin> captured on camera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 Mel, I think they definetly sound like seizures to me and NOT a virus. Go with your instincts. Max and a few other kiddos here have these partial seizures that look like 3 second jerks and they aren't infantile spasms BUT they are seizures. They have never caught one on an EEG (and he's had about 5 EEG's) but all the same anyone who ever sees one knows it's a seizure. He also gets a wild look in his eyes - sometimes a scared look - and his arms go flying out, his legs kick straight out too. When he was younger and I was nursing him he would bite down when he had a seizure. He may still be doing this but Max is not mobile and it isn't obvious except sometimes his fingers get caught in his mouth when he has a seizure and he bites them. Max also knows his seizures are building because he'll start fussing and rubbing his eyes like he's trying to rub the " fog " out. He can sometimes have 13 in a row, or the seizure/wild look/seizure/wild look etc can sometimes go on for 2-3 minutes. These(for us) have been very hard to control with medicines. Max recieved a VNS this summer along with being on 3 meds and he is still having these seizures daily. Perhaps this is what Louie is experiencing. Hope this helps, Joanie & Max 4yrs Quote Link to comment Share on other sites More sharing options...
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