Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Hi all! We haven't posted in a while as we were on a good streak with seizure control. Well, the seizures are back with a vengence. has absence seizures and atypical absence seizures. He seems to be having these in his sllep and upon wakening. Once he is awake, he is fine. If he gets tired or takes a nap, he has them again. THey look like little head nods that last about 3 seconds. Anyone experience this?? We are getting ready to try Zonegran and I just wondered if anyone has tried it. Please let me know!!! Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 is 3 1/2. These seizures started when he was 2. this is the only type of seizures that he has (so far). As far as Lennox Gasteau, he had one EEG that said he had that pettern and then the last 3 haven't shown it. He is also on depakote. We started the zonegran today and he has been a bit irritable. I am really sad to add these drugs back into his system b/c we went 4 months without a seizure and had almost tapered off all drugs. His eyes got the light back in them, he was sleeping less and has had so much more energy, coordination, language-and so forth. It is so frustrating for me to put him on these drugs when nothing has worked yet. NOTHING!! Noone has ever called these infantile spasms but that really doesn't mean anything b/c I don't think any of the docs really understand epilepsy drugs or they would be able to fix our kiddos. I am just really down. I feel like crying. All does is scream and want me to hold him and I have a 10 month old baby who wants lovin too. I feel so torn between them and I am sick of hearing him scream and can't tell me why or where it hurts. AAAAAAAHHHHHH!!! Anyway, thanks for letting me vent. Love and hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 is 3 1/2. These seizures started when he was 2. this is the only type of seizures that he has (so far). As far as Lennox Gasteau, he had one EEG that said he had that pettern and then the last 3 haven't shown it. He is also on depakote. We started the zonegran today and he has been a bit irritable. I am really sad to add these drugs back into his system b/c we went 4 months without a seizure and had almost tapered off all drugs. His eyes got the light back in them, he was sleeping less and has had so much more energy, coordination, language-and so forth. It is so frustrating for me to put him on these drugs when nothing has worked yet. NOTHING!! Noone has ever called these infantile spasms but that really doesn't mean anything b/c I don't think any of the docs really understand epilepsy drugs or they would be able to fix our kiddos. I am just really down. I feel like crying. All does is scream and want me to hold him and I have a 10 month old baby who wants lovin too. I feel so torn between them and I am sick of hearing him scream and can't tell me why or where it hurts. AAAAAAAHHHHHH!!! Anyway, thanks for letting me vent. Love and hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 , I'm so sorry for the hard time you are going through. Go back to those seizure free months: what exactly were you doing then? I would try my best to go back there. Were you on a little Depakote? Please don't beat yourself up if you are giving AEDs. Everyone's goal is seizure free. If that takes a little medicine, so be it. Your post reminded me of years past. joel began having seizures when I was pregnant with his little sis. The week I delivered her, we started on his first AED. What a horrible week that was. was seizing & wanting me, tearing the house down. The baby was demanding tons of time. I just about lost it! I felt like a failure all the way around. Others may say " take one day at a time. " Well, when you live in this epilepsy world, sometimes you have to take " one hour at a time " and look back at that hour and say, " shewww, I survived that one " and then move on. You do have it rough, don't let anyone tell you you don't. But on the bright side, we know how to appreciate a truly peaceful moment - when everyone is happy. We live for those moments, while others take them for granted. (Its like this: I will NEVER, NEVER, NEVER, NEVER take for granted that my 6 year old FINALLY will poop in the potty. Thank you Dear Lord, I will never ever take it for granted! Everytime I see him on the pot, I am filled with excitement! Sure, my friends and family think I'm nuts, but I'll always be thankful!) Don't know how I got off on that. Just wanted to say " hang in there. " Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 On Thu, 9 Aug 2001 22:15:44 EDT lloydandleslie@... writes: > is 3 1/2. These seizures started when he was 2. this is > the > only type of seizures that he has (so far). As far as Lennox > Gasteau, he had > one EEG that said he had that pettern and then the last 3 haven't > shown it. > He is also on depakote. > > We started the zonegran today and he has been a bit irritable. I am > really > sad to add these drugs back into his system b/c we went 4 months > without a > seizure and had almost tapered off all drugs. His eyes got the > light back in > them, he was sleeping less and has had so much more energy, > coordination, > language-and so forth. It is so frustrating for me to put him on > these drugs > when nothing has worked yet. NOTHING!! > > Noone has ever called these infantile spasms but that really doesn't > mean > anything b/c I don't think any of the docs really understand > epilepsy drugs > or they would be able to fix our kiddos. > > I am just really down. I feel like crying. All does is > scream > and want me to hold him and I have a 10 month old baby who wants > lovin too. > I feel so torn between them and I am sick of hearing him scream and > can't > tell me why or where it hurts. AAAAAAAHHHHHH!!! > > Anyway, thanks for letting me vent. > > Love and hugs, > ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 , I'm so sorry for the hard time you are going through. Go back to those seizure free months: what exactly were you doing then? I would try my best to go back there. Were you on a little Depakote? Please don't beat yourself up if you are giving AEDs. Everyone's goal is seizure free. If that takes a little medicine, so be it. Your post reminded me of years past. joel began having seizures when I was pregnant with his little sis. The week I delivered her, we started on his first AED. What a horrible week that was. was seizing & wanting me, tearing the house down. The baby was demanding tons of time. I just about lost it! I felt like a failure all the way around. Others may say " take one day at a time. " Well, when you live in this epilepsy world, sometimes you have to take " one hour at a time " and look back at that hour and say, " shewww, I survived that one " and then move on. You do have it rough, don't let anyone tell you you don't. But on the bright side, we know how to appreciate a truly peaceful moment - when everyone is happy. We live for those moments, while others take them for granted. (Its like this: I will NEVER, NEVER, NEVER, NEVER take for granted that my 6 year old FINALLY will poop in the potty. Thank you Dear Lord, I will never ever take it for granted! Everytime I see him on the pot, I am filled with excitement! Sure, my friends and family think I'm nuts, but I'll always be thankful!) Don't know how I got off on that. Just wanted to say " hang in there. " Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 On Thu, 9 Aug 2001 22:15:44 EDT lloydandleslie@... writes: > is 3 1/2. These seizures started when he was 2. this is > the > only type of seizures that he has (so far). As far as Lennox > Gasteau, he had > one EEG that said he had that pettern and then the last 3 haven't > shown it. > He is also on depakote. > > We started the zonegran today and he has been a bit irritable. I am > really > sad to add these drugs back into his system b/c we went 4 months > without a > seizure and had almost tapered off all drugs. His eyes got the > light back in > them, he was sleeping less and has had so much more energy, > coordination, > language-and so forth. It is so frustrating for me to put him on > these drugs > when nothing has worked yet. NOTHING!! > > Noone has ever called these infantile spasms but that really doesn't > mean > anything b/c I don't think any of the docs really understand > epilepsy drugs > or they would be able to fix our kiddos. > > I am just really down. I feel like crying. All does is > scream > and want me to hold him and I have a 10 month old baby who wants > lovin too. > I feel so torn between them and I am sick of hearing him scream and > can't > tell me why or where it hurts. AAAAAAAHHHHHH!!! > > Anyway, thanks for letting me vent. > > Love and hugs, > ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 ... I know the frustration too. We just trailed Sev on zonegran about 4 weeks ago. It broke my heart to have to add another med. When we started the diet, he was on three different meds and wasn't progressing. I too cried the day I gave him the first dose of zonegran. It was a nightmare the entire week we were on it...he cried all night, pushed us away with all his might which is completely out of character...he's a snuggler and wonderfully hugger. He also began biting us. It was just ridiculous and then an old seizure type came back and even though we've now dropped the z, the seizure type has stayed. It was just a fiasco. Plus, in my mind, I always knew there were these 'new' meds out there if we needed them...now I know that there's one less thing for us to try! Sorry....this should have been a post to cheer you up and instead, I've just added my pity party to the mix. Just know that I understand. Hopefully you'll see better things with the z than we did...others seem to be happy with it. Doc wants us to jump on the Keppra wagon today, but I'm just gun shy now. Plus, if I trythe keppra and it doesn't work, then there really nothing left out there...what a scary thought. Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 ... I know the frustration too. We just trailed Sev on zonegran about 4 weeks ago. It broke my heart to have to add another med. When we started the diet, he was on three different meds and wasn't progressing. I too cried the day I gave him the first dose of zonegran. It was a nightmare the entire week we were on it...he cried all night, pushed us away with all his might which is completely out of character...he's a snuggler and wonderfully hugger. He also began biting us. It was just ridiculous and then an old seizure type came back and even though we've now dropped the z, the seizure type has stayed. It was just a fiasco. Plus, in my mind, I always knew there were these 'new' meds out there if we needed them...now I know that there's one less thing for us to try! Sorry....this should have been a post to cheer you up and instead, I've just added my pity party to the mix. Just know that I understand. Hopefully you'll see better things with the z than we did...others seem to be happy with it. Doc wants us to jump on the Keppra wagon today, but I'm just gun shy now. Plus, if I trythe keppra and it doesn't work, then there really nothing left out there...what a scary thought. Nan Quote Link to comment Share on other sites More sharing options...
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