Guest guest Posted July 31, 2004 Report Share Posted July 31, 2004 I've waited a week to post to see what would happen with stella on little and now no (yipee) diazepam. She was great for 2 days this week, no seizures, then friday am she woke up early having a tonic clonic, later that morning she had a drop. This morning (saturday) she awoke again having a t/c followed by another an hour later, she's had 2 drops and endless absense seizures through the afternoon. She has not been getting her afternoon dose of lamictal either, and thursday we ran out of her 25mg of lamictal which we add to her usual dose of 100mg 3x a day so she went w/o. So far today, she's had a couple sips of h20, had nothing to eat, and flat out refuses to take her meds. I'm in a panic of what to do now. I know she was responding well to the lower valium, so was it the sudden missed doses of lamictal? I'm hoping to get atleast one meal in her tonight with one dose of meds. It is so upsetting to see her slip back into the pattern of unresponsiveness and non stop staring spells (her docs don't think she has absense, they think they are a sort of complex partial since they last a long time). Any thoughts? I absolutely do not want to give her any diastat, now that she is off the valium (it' was almost 2 years that she was on it) I want to keep her off of it. One thing I did notice was the sudden increase of sensitivity, and moodiness yesterday, seizure related? I'm not sure. We have added more MCT oil to her diet, so whether or not that has helped and gave her those 2 days of seizure freedom I don't know. But last week she was back up to 50+ drops a day. She was just fitted for a helmet and has to wear knee pads now, I just hate the thought of her regressing. -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, and Diamox. (just weaned her off the diazepam) Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 , Hang in there - I know it is easier said that done at times - going through a bit of that myself right now! There is not a lot I can suggest, but I wouldn't add anymore MCT oil for the moment, sort out other things, ie. getting her taking her meds and eating all her food again properly before making any dietry changes. MCT can cause nausea and sickness (some of our MCT mums can regail wonderful stories about MCT stinking vomit and how it is curling the sides of their laminate flooring because so much of it has been thrown up all over it). The increase of sensitivity and moodiness could be coming off the valium - all of a sudden she is not living in a 'fog' anymore. Things can be a little frightening for them until they get used to this and feel comfortable with it. I sympathise with you whole heartedly about not want to give drugs - I have just relented (for a few days ONLY) to give Clobazam at nights to try and slow the seizures down until I get 'whats wrong' sorted out. I too get in a panic at times and hope that the diet is still working for and is this is just a blip? - I don't want to go back to how things were - because the last two weeks have been pretty much like how it used to be - has given me a big reminder of how horrible things were pre-diet. Hope some of the above as helped - will be thinking of you and hope you 'nail' the problem soon. Good Luck Emma - Mum to . > I've waited a week to post to see what would happen with stella on little > and now no (yipee) diazepam. She was great for 2 days this week, no > seizures, then friday am she woke up early having a tonic clonic, later that > morning she had a drop. This morning (saturday) she awoke again having a > t/c followed by another an hour later, she's had 2 drops and endless absense > seizures through the afternoon. She has not been getting her afternoon dose > of lamictal either, and thursday we ran out of her 25mg of lamictal which we > add to her usual dose of 100mg 3x a day so she went w/o. So far today, > she's had a couple sips of h20, had nothing to eat, and flat out refuses to > take her meds. I'm in a panic of what to do now. I know she was responding > well to the lower valium, so was it the sudden missed doses of lamictal? > I'm hoping to get atleast one meal in her tonight with one dose of meds. It > is so upsetting to see her slip back into the pattern of unresponsiveness > and non stop staring spells (her docs don't think she has absense, they > think they are a sort of complex partial since they last a long time). > Any thoughts? > I absolutely do not want to give her any diastat, now that she is off the > valium (it' was almost 2 years that she was on it) I want to keep her off of > it. > One thing I did notice was the sudden increase of sensitivity, and moodiness > yesterday, seizure related? I'm not sure. > We have added more MCT oil to her diet, so whether or not that has helped > and gave her those 2 days of seizure freedom I don't know. But last week > she was back up to 50+ drops a day. She was just fitted for a helmet and > has to wear knee pads now, I just hate the thought of her regressing. > > -- > -mom to Stella, 5years old, started keto diet May 10th 2004 still > waiting to be seizure free. Also on Lamictal, and Diamox. (just weaned her > off the diazepam) Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 I was told by the organisation here that helps with benzo withdrawal to 'throw away my diary' when it comes to the last of a withdrawal - no real rhyme or reason, any previous patterns are not always so obvious at the end. I would try and keep everything else, (including the lamictal) as stable as possible if you can, they are so hypersensitive during these reductions and withdrawals that everything seems magnified. This might apply to her moods as well, used to be like a bear with a sore head during withdrawal - also things like light - couldn't stand bright lights, loud noises, had tingling in his hands, the works. Poor kids How much was the last diaz dose - how quickly had you been reducing by? ----- Original Message ----- > I've waited a week to post to see what would happen with stella on little > and now no (yipee) diazepam. She was great for 2 days this week, no > seizures, then friday am she woke up early having a tonic clonic, later that > morning she had a drop. This morning (saturday) she awoke again having a > t/c followed by another an hour later, she's had 2 drops and endless absense > seizures through the afternoon. She has not been getting her afternoon dose > of lamictal either, and thursday we ran out of her 25mg of lamictal which we > add to her usual dose of 100mg 3x a day so she went w/o. So far today, > she's had a couple sips of h20, had nothing to eat, and flat out refuses to > take her meds. I'm in a panic of what to do now. I know she was responding > well to the lower valium, so was it the sudden missed doses of lamictal? > I'm hoping to get atleast one meal in her tonight with one dose of meds. It > is so upsetting to see her slip back into the pattern of unresponsiveness > and non stop staring spells (her docs don't think she has absense, they > think they are a sort of complex partial since they last a long time). > Any thoughts? > I absolutely do not want to give her any diastat, now that she is off the > valium (it' was almost 2 years that she was on it) I want to keep her off of > it. > One thing I did notice was the sudden increase of sensitivity, and moodiness > yesterday, seizure related? I'm not sure. > We have added more MCT oil to her diet, so whether or not that has helped > and gave her those 2 days of seizure freedom I don't know. But last week > she was back up to 50+ drops a day. She was just fitted for a helmet and > has to wear knee pads now, I just hate the thought of her regressing. > > -- > -mom to Stella, 5years old, started keto diet May 10th 2004 still > waiting to be seizure free. Also on Lamictal, and Diamox. (just weaned her > off the diazepam) Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 Some of it could be missing the lamictal dose. We had a terrible time with lamictal withdrawal over 4 months, and I am sure that sudden " cold turkey " missing doses would be a bigger problem. I know an adult who had a t/c every time she was over an hour late on a lamictal dose, so maybe that is part of what is going on. Whatever it is, I hope things calm down soon. Hang in there! , mom to Langan, 2 yrs old and keto kid since 11/03; med free since 4/2/04; almost quit keto b/c of prolonged metabolic acidosis, but hanging in there on lower ratio > I've waited a week to post to see what would happen with stella on little > and now no (yipee) diazepam. She was great for 2 days this week, no > seizures, then friday am she woke up early having a tonic clonic, later that > morning she had a drop. This morning (saturday) she awoke again having a > t/c followed by another an hour later, she's had 2 drops and endless absense > seizures through the afternoon. She has not been getting her afternoon dose > of lamictal either, and thursday we ran out of her 25mg of lamictal which we > add to her usual dose of 100mg 3x a day so she went w/o. So far today, > she's had a couple sips of h20, had nothing to eat, and flat out refuses to > take her meds. I'm in a panic of what to do now. I know she was responding > well to the lower valium, so was it the sudden missed doses of lamictal? > I'm hoping to get atleast one meal in her tonight with one dose of meds. It > is so upsetting to see her slip back into the pattern of unresponsiveness > and non stop staring spells (her docs don't think she has absense, they > think they are a sort of complex partial since they last a long time). > Any thoughts? > I absolutely do not want to give her any diastat, now that she is off the > valium (it' was almost 2 years that she was on it) I want to keep her off of > it. > One thing I did notice was the sudden increase of sensitivity, and moodiness > yesterday, seizure related? I'm not sure. > We have added more MCT oil to her diet, so whether or not that has helped > and gave her those 2 days of seizure freedom I don't know. But last week > she was back up to 50+ drops a day. She was just fitted for a helmet and > has to wear knee pads now, I just hate the thought of her regressing. > > -- > -mom to Stella, 5years old, started keto diet May 10th 2004 still > waiting to be seizure free. Also on Lamictal, and Diamox. (just weaned her > off the diazepam) Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 I am so sorry that you and Stella are having to go through this. Seizures are, indeed, a nasty monster and I often wonder why on earth these innocent children have to suffer. Please hang in there and know that you are not alone. Has Stella had her blood gasses checked recently? Do you know if her bicarbs are low? I only ask b/c when Langan was in severe acidosis (bicarbs 8-10) her seizures went out of control. The diet makes you more acidotic naturally, because ketones are acids, but when the acidosis reaches a certain level then it can be terrible for seizure control. Or is it possible Stella is getting sick? Is there any way she is getting foods that she should not get, or that the meals are not calculated correctly? Keto is such a guessing game. I am just so sorry that things are not going well. I hope the vns helps your sweet daughter. I have heard wonderful success stories about the vns, but I understand that it takes some time to get it calibrated for maximum effectiveness. Please hang in there, and know you and Stella are in our thoughts and prayers. (((HUGS))) , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned due to persistent severe metabolic acidosis, but keto kid at heart forever > Hi all, it's been ages since I've posted, life has been so hard lately. > Stella started the keto diet this year May 10th. It's been awful for > her, I think her seizures could not get any worse. She had 2 wonderful > weeks seperate of each other with no seizures, but the rest of the time > she's been seizing every day. And some days in status. She's due for > the vns on the 19th of this month, and i'm just wiped out, i've hit > rock bottom with my emotions. Last night while giving stella her bath, > I just broke down, her little body which is tiny now she's on the diet, > is so beautiful and I can't imagine seeing those nasty scars on her > neck and chest, I know it's a chance for her, and it's only chance, but > it just kills me that there is nothing else. Our kids who are so > beautiful and loving and sweet, and just so innocent have to endure > this nasty disability and for stella and those kids who are having such > a tough time out there it's just not fair. She had an emergency eeg > last friday and it proved she was in status, not TC status but some sub > clinical status where she would have periods of no response, her head > would droop, she drool, her hands would twich, eyes and eyebrows > twitching, her legs or arms may jerk or her head would throw back > little myoclonics I guess, then there would be the odd TC thrown in > too. They put her on a huge dose of klonopin to try to stop the status > which it has done, but now she's a wreck, so emotional, can barely hold > her head up, is drooling all the time, cries when I walk out of the > room, can barely talk. I swear it's gone from bad to worse. What I > wouldn't do to trade places with her and take it all away. > So now i trying to figure out if I take her off the diet and let her > enjoy food again, or keep her on it with the vns. Her seizures for > those of you who don't know anything about her can range from one to > over 100 in a day, with regular status events. > Sorry about my emotional rambling, > amanda > > > Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal > and diamox, just weaned diazepam (yippeee). Still waiting for Stella > to be seizure free, but she's doing much better. Failed every med > available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > beautiful and a wonderful big sis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 I am so sorry that you and Stella are having to go through this. Seizures are, indeed, a nasty monster and I often wonder why on earth these innocent children have to suffer. Please hang in there and know that you are not alone. Has Stella had her blood gasses checked recently? Do you know if her bicarbs are low? I only ask b/c when Langan was in severe acidosis (bicarbs 8-10) her seizures went out of control. The diet makes you more acidotic naturally, because ketones are acids, but when the acidosis reaches a certain level then it can be terrible for seizure control. Or is it possible Stella is getting sick? Is there any way she is getting foods that she should not get, or that the meals are not calculated correctly? Keto is such a guessing game. I am just so sorry that things are not going well. I hope the vns helps your sweet daughter. I have heard wonderful success stories about the vns, but I understand that it takes some time to get it calibrated for maximum effectiveness. Please hang in there, and know you and Stella are in our thoughts and prayers. (((HUGS))) , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned due to persistent severe metabolic acidosis, but keto kid at heart forever > Hi all, it's been ages since I've posted, life has been so hard lately. > Stella started the keto diet this year May 10th. It's been awful for > her, I think her seizures could not get any worse. She had 2 wonderful > weeks seperate of each other with no seizures, but the rest of the time > she's been seizing every day. And some days in status. She's due for > the vns on the 19th of this month, and i'm just wiped out, i've hit > rock bottom with my emotions. Last night while giving stella her bath, > I just broke down, her little body which is tiny now she's on the diet, > is so beautiful and I can't imagine seeing those nasty scars on her > neck and chest, I know it's a chance for her, and it's only chance, but > it just kills me that there is nothing else. Our kids who are so > beautiful and loving and sweet, and just so innocent have to endure > this nasty disability and for stella and those kids who are having such > a tough time out there it's just not fair. She had an emergency eeg > last friday and it proved she was in status, not TC status but some sub > clinical status where she would have periods of no response, her head > would droop, she drool, her hands would twich, eyes and eyebrows > twitching, her legs or arms may jerk or her head would throw back > little myoclonics I guess, then there would be the odd TC thrown in > too. They put her on a huge dose of klonopin to try to stop the status > which it has done, but now she's a wreck, so emotional, can barely hold > her head up, is drooling all the time, cries when I walk out of the > room, can barely talk. I swear it's gone from bad to worse. What I > wouldn't do to trade places with her and take it all away. > So now i trying to figure out if I take her off the diet and let her > enjoy food again, or keep her on it with the vns. Her seizures for > those of you who don't know anything about her can range from one to > over 100 in a day, with regular status events. > Sorry about my emotional rambling, > amanda > > > Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal > and diamox, just weaned diazepam (yippeee). Still waiting for Stella > to be seizure free, but she's doing much better. Failed every med > available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > beautiful and a wonderful big sis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 I am so sorry that you and Stella are having to go through this. Seizures are, indeed, a nasty monster and I often wonder why on earth these innocent children have to suffer. Please hang in there and know that you are not alone. Has Stella had her blood gasses checked recently? Do you know if her bicarbs are low? I only ask b/c when Langan was in severe acidosis (bicarbs 8-10) her seizures went out of control. The diet makes you more acidotic naturally, because ketones are acids, but when the acidosis reaches a certain level then it can be terrible for seizure control. Or is it possible Stella is getting sick? Is there any way she is getting foods that she should not get, or that the meals are not calculated correctly? Keto is such a guessing game. I am just so sorry that things are not going well. I hope the vns helps your sweet daughter. I have heard wonderful success stories about the vns, but I understand that it takes some time to get it calibrated for maximum effectiveness. Please hang in there, and know you and Stella are in our thoughts and prayers. (((HUGS))) , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned due to persistent severe metabolic acidosis, but keto kid at heart forever > Hi all, it's been ages since I've posted, life has been so hard lately. > Stella started the keto diet this year May 10th. It's been awful for > her, I think her seizures could not get any worse. She had 2 wonderful > weeks seperate of each other with no seizures, but the rest of the time > she's been seizing every day. And some days in status. She's due for > the vns on the 19th of this month, and i'm just wiped out, i've hit > rock bottom with my emotions. Last night while giving stella her bath, > I just broke down, her little body which is tiny now she's on the diet, > is so beautiful and I can't imagine seeing those nasty scars on her > neck and chest, I know it's a chance for her, and it's only chance, but > it just kills me that there is nothing else. Our kids who are so > beautiful and loving and sweet, and just so innocent have to endure > this nasty disability and for stella and those kids who are having such > a tough time out there it's just not fair. She had an emergency eeg > last friday and it proved she was in status, not TC status but some sub > clinical status where she would have periods of no response, her head > would droop, she drool, her hands would twich, eyes and eyebrows > twitching, her legs or arms may jerk or her head would throw back > little myoclonics I guess, then there would be the odd TC thrown in > too. They put her on a huge dose of klonopin to try to stop the status > which it has done, but now she's a wreck, so emotional, can barely hold > her head up, is drooling all the time, cries when I walk out of the > room, can barely talk. I swear it's gone from bad to worse. What I > wouldn't do to trade places with her and take it all away. > So now i trying to figure out if I take her off the diet and let her > enjoy food again, or keep her on it with the vns. Her seizures for > those of you who don't know anything about her can range from one to > over 100 in a day, with regular status events. > Sorry about my emotional rambling, > amanda > > > Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal > and diamox, just weaned diazepam (yippeee). Still waiting for Stella > to be seizure free, but she's doing much better. Failed every med > available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > beautiful and a wonderful big sis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Dear This is a second response, as I just recalled how bad was before I weaned her off of all the drugs. She would not eat, no longer walked (she crawled) and she seizured (grand mal) every hour day and night. I believed she would die, so I took her off all the meds...with the thought that if she was to die, I would rather she go without them, as they certainly were not working. I am not advocating you do the same, but we keep reading that the drugs can cause seizures. There have been numerous links lately on research on this on this board. Could it be the drugs??? . stansfield/lyonsfamily astansfield@...> wrote: Hi all, it's been ages since I've posted, life has been so hard lately. Stella started the keto diet this year May 10th. It's been awful for her, I think her seizures could not get any worse. She had 2 wonderful weeks seperate of each other with no seizures, but the rest of the time she's been seizing every day. And some days in status. She's due for the vns on the 19th of this month, and i'm just wiped out, i've hit rock bottom with my emotions. Last night while giving stella her bath, I just broke down, her little body which is tiny now she's on the diet, is so beautiful and I can't imagine seeing those nasty scars on her neck and chest, I know it's a chance for her, and it's only chance, but it just kills me that there is nothing else. Our kids who are so beautiful and loving and sweet, and just so innocent have to endure this nasty disability and for stella and those kids who are having such a tough time out there it's just not fair. She had an emergency eeg last friday and it proved she was in status, not TC status but some sub clinical status where she would have periods of no response, her head would droop, she drool, her hands would twich, eyes and eyebrows twitching, her legs or arms may jerk or her head would throw back little myoclonics I guess, then there would be the odd TC thrown in too. They put her on a huge dose of klonopin to try to stop the status which it has done, but now she's a wreck, so emotional, can barely hold her head up, is drooling all the time, cries when I walk out of the room, can barely talk. I swear it's gone from bad to worse. What I wouldn't do to trade places with her and take it all away. So now i trying to figure out if I take her off the diet and let her enjoy food again, or keep her on it with the vns. Her seizures for those of you who don't know anything about her can range from one to over 100 in a day, with regular status events. Sorry about my emotional rambling, amanda Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal and diamox, just weaned diazepam (yippeee). Still waiting for Stella to be seizure free, but she's doing much better. Failed every med available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, beautiful and a wonderful big sis. " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Dear This is a second response, as I just recalled how bad was before I weaned her off of all the drugs. She would not eat, no longer walked (she crawled) and she seizured (grand mal) every hour day and night. I believed she would die, so I took her off all the meds...with the thought that if she was to die, I would rather she go without them, as they certainly were not working. I am not advocating you do the same, but we keep reading that the drugs can cause seizures. There have been numerous links lately on research on this on this board. Could it be the drugs??? . stansfield/lyonsfamily astansfield@...> wrote: Hi all, it's been ages since I've posted, life has been so hard lately. Stella started the keto diet this year May 10th. It's been awful for her, I think her seizures could not get any worse. She had 2 wonderful weeks seperate of each other with no seizures, but the rest of the time she's been seizing every day. And some days in status. She's due for the vns on the 19th of this month, and i'm just wiped out, i've hit rock bottom with my emotions. Last night while giving stella her bath, I just broke down, her little body which is tiny now she's on the diet, is so beautiful and I can't imagine seeing those nasty scars on her neck and chest, I know it's a chance for her, and it's only chance, but it just kills me that there is nothing else. Our kids who are so beautiful and loving and sweet, and just so innocent have to endure this nasty disability and for stella and those kids who are having such a tough time out there it's just not fair. She had an emergency eeg last friday and it proved she was in status, not TC status but some sub clinical status where she would have periods of no response, her head would droop, she drool, her hands would twich, eyes and eyebrows twitching, her legs or arms may jerk or her head would throw back little myoclonics I guess, then there would be the odd TC thrown in too. They put her on a huge dose of klonopin to try to stop the status which it has done, but now she's a wreck, so emotional, can barely hold her head up, is drooling all the time, cries when I walk out of the room, can barely talk. I swear it's gone from bad to worse. What I wouldn't do to trade places with her and take it all away. So now i trying to figure out if I take her off the diet and let her enjoy food again, or keep her on it with the vns. Her seizures for those of you who don't know anything about her can range from one to over 100 in a day, with regular status events. Sorry about my emotional rambling, amanda Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal and diamox, just weaned diazepam (yippeee). Still waiting for Stella to be seizure free, but she's doing much better. Failed every med available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, beautiful and a wonderful big sis. " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Dear This is a second response, as I just recalled how bad was before I weaned her off of all the drugs. She would not eat, no longer walked (she crawled) and she seizured (grand mal) every hour day and night. I believed she would die, so I took her off all the meds...with the thought that if she was to die, I would rather she go without them, as they certainly were not working. I am not advocating you do the same, but we keep reading that the drugs can cause seizures. There have been numerous links lately on research on this on this board. Could it be the drugs??? . stansfield/lyonsfamily astansfield@...> wrote: Hi all, it's been ages since I've posted, life has been so hard lately. Stella started the keto diet this year May 10th. It's been awful for her, I think her seizures could not get any worse. She had 2 wonderful weeks seperate of each other with no seizures, but the rest of the time she's been seizing every day. And some days in status. She's due for the vns on the 19th of this month, and i'm just wiped out, i've hit rock bottom with my emotions. Last night while giving stella her bath, I just broke down, her little body which is tiny now she's on the diet, is so beautiful and I can't imagine seeing those nasty scars on her neck and chest, I know it's a chance for her, and it's only chance, but it just kills me that there is nothing else. Our kids who are so beautiful and loving and sweet, and just so innocent have to endure this nasty disability and for stella and those kids who are having such a tough time out there it's just not fair. She had an emergency eeg last friday and it proved she was in status, not TC status but some sub clinical status where she would have periods of no response, her head would droop, she drool, her hands would twich, eyes and eyebrows twitching, her legs or arms may jerk or her head would throw back little myoclonics I guess, then there would be the odd TC thrown in too. They put her on a huge dose of klonopin to try to stop the status which it has done, but now she's a wreck, so emotional, can barely hold her head up, is drooling all the time, cries when I walk out of the room, can barely talk. I swear it's gone from bad to worse. What I wouldn't do to trade places with her and take it all away. So now i trying to figure out if I take her off the diet and let her enjoy food again, or keep her on it with the vns. Her seizures for those of you who don't know anything about her can range from one to over 100 in a day, with regular status events. Sorry about my emotional rambling, amanda Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal and diamox, just weaned diazepam (yippeee). Still waiting for Stella to be seizure free, but she's doing much better. Failed every med available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, beautiful and a wonderful big sis. " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Sounds like things def are very hard going there right now , and I can see why you are contemplating the vns for Stella, but are you sure she isn't still toxic on the remaining two meds? Or that the diamox with it's acid-inducing properties hasn't caused her to go too acidic? And how long is it now since you weaned the diaz? As you know it took 6 weeks for to recover from his nightmare withdrawal, which was full-on status, but his was cold turkied, so obviously quite extreme reaction wise. Was the klonipin just a one off, or has she had it added in now? ----- Original Message ----- From: stansfield/lyonsfamily Hi all, it's been ages since I've posted, life has been so hard lately. Stella started the keto diet this year May 10th. It's been awful for her, I think her seizures could not get any worse. She had 2 wonderful weeks seperate of each other with no seizures, but the rest of the time she's been seizing every day. And some days in status. She's due for the vns on the 19th of this month, and i'm just wiped out, i've hit rock bottom with my emotions. Last night while giving stella her bath, I just broke down, her little body which is tiny now she's on the diet, is so beautiful and I can't imagine seeing those nasty scars on her neck and chest, I know it's a chance for her, and it's only chance, but it just kills me that there is nothing else. Our kids who are so beautiful and loving and sweet, and just so innocent have to endure this nasty disability and for stella and those kids who are having such a tough time out there it's just not fair. She had an emergency eeg last friday and it proved she was in status, not TC status but some sub clinical status where she would have periods of no response, her head would droop, she drool, her hands would twich, eyes and eyebrows twitching, her legs or arms may jerk or her head would throw back little myoclonics I guess, then there would be the odd TC thrown in too. They put her on a huge dose of klonopin to try to stop the status which it has done, but now she's a wreck, so emotional, can barely hold her head up, is drooling all the time, cries when I walk out of the room, can barely talk. I swear it's gone from bad to worse. What I wouldn't do to trade places with her and take it all away. So now i trying to figure out if I take her off the diet and let her enjoy food again, or keep her on it with the vns. Her seizures for those of you who don't know anything about her can range from one to over 100 in a day, with regular status events. Sorry about my emotional rambling, amanda Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal and diamox, just weaned diazepam (yippeee). Still waiting for Stella to be seizure free, but she's doing much better. Failed every med available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, beautiful and a wonderful big sis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 , I'm so sorry Stella is having such a rough time. Kristan used to have 100's of seizures, infact, 150-200 a day, but that was when she was on a lot of meds, she's not on meds anymore and we started the keto diet about a week after all meds were stopped and noticed a big drop to 5-6 a day when we started the diet. We have fine tuned and done a lot with the diet and haven't gotten the success/control we wanted so we are currently weaning Kristan off the diet. She is no worse as we wean her off. Right now her seizures are anywhere from 5-20 a day but she has been teething lately and I think she might be coming down with something and has had 40 today and has been vomiting with every seizure. Good luck with the VNS, I hope it is the answer for your Stella. I will pray for her. Satnam, mom to Kristan, 23 months Keto kid since August 2003 and currently weaning from the diet > Hi all, it's been ages since I've posted, life has been so hard lately. > Stella started the keto diet this year May 10th. It's been awful for > her, I think her seizures could not get any worse. She had 2 wonderful > weeks seperate of each other with no seizures, but the rest of the time > she's been seizing every day. And some days in status. She's due for > the vns on the 19th of this month, and i'm just wiped out, i've hit > rock bottom with my emotions. Last night while giving stella her bath, > I just broke down, her little body which is tiny now she's on the diet, > is so beautiful and I can't imagine seeing those nasty scars on her > neck and chest, I know it's a chance for her, and it's only chance, but > it just kills me that there is nothing else. Our kids who are so > beautiful and loving and sweet, and just so innocent have to endure > this nasty disability and for stella and those kids who are having such > a tough time out there it's just not fair. She had an emergency eeg > last friday and it proved she was in status, not TC status but some sub > clinical status where she would have periods of no response, her head > would droop, she drool, her hands would twich, eyes and eyebrows > twitching, her legs or arms may jerk or her head would throw back > little myoclonics I guess, then there would be the odd TC thrown in > too. They put her on a huge dose of klonopin to try to stop the status > which it has done, but now she's a wreck, so emotional, can barely hold > her head up, is drooling all the time, cries when I walk out of the > room, can barely talk. I swear it's gone from bad to worse. What I > wouldn't do to trade places with her and take it all away. > So now i trying to figure out if I take her off the diet and let her > enjoy food again, or keep her on it with the vns. Her seizures for > those of you who don't know anything about her can range from one to > over 100 in a day, with regular status events. > Sorry about my emotional rambling, > amanda > > > Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal > and diamox, just weaned diazepam (yippeee). Still waiting for Stella > to be seizure free, but she's doing much better. Failed every med > available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > beautiful and a wonderful big sis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi So sorry to hear about poor little Stella - and you all having to cope with it. It can be so devastating. Five years of epilepsy and other things have left me with a stomach ulcer and some days I've have not known how to carry on. But you do for the sake of the kids. Just recently Ben saw me in tears and he was quite worried but we had a big hug and I was able to explain what was going on. For us drugs were bad, sometimes very bad, and the combi of keto and drugs wasn't good either. Would you dare come off all drugs? I know sometimes the prospect of things worsening in any way is too much to contemplate. Hang in there we are all thinking of you so much. Rose, mum of Ben Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi , You hadn't posted in awhile, so I was really hoping that things were going well for Stella. It really mad me sad to read your post and learn of your struggles. I feel for you just as much as I feel for Stella. Luckily, our kids seem spared the sadness and worry that their parents feel. I think everyone on this site knows what it is like to hit rock bottom, and to break down with the worry and sadness of it all. But then we carry on somehow. I just keep wondering what could have been different about the two separate weeks when Stella was seizure free? Perhaps the key to understanding is in those two weeks. Are you in the process of weaning meds? I'm with those who feel you should try to wean meds before giving up on the diet. Or does Stella just get worse and stay worse as you lower the meds? I know you started this diet with all the hope and optomism in the world. It felt good to be taking control of things, didn't it? Like many of us, you were probably thinking the diet is yourlast resort, so it has to work. As you know, it is not the last resort. The VNS just might be Stella's best bet for licking this miserable condition. If not the VNS, maybe it will at least help Stella get off meds, and then she could try keto again. So, you are not out of options. If the VNS works, you will probably grow to love those little scars. Keep in mind that others have been in your shoes and things have still worked out OK in the end. Don't give up hope. But, one thing you must do is stay in touch! Don't feel alone in all this. We are here for you! No one here knew what you were going through. At the very least, keep us informed about sweet little Stella, OK? Hang in there; we're all pulling for you. Gretchen > Hi all, it's been ages since I've posted, life has been so hard lately. > Stella started the keto diet this year May 10th. It's been awful for > her, I think her seizures could not get any worse. She had 2 wonderful > weeks seperate of each other with no seizures, but the rest of the time > she's been seizing every day. And some days in status. She's due for > the vns on the 19th of this month, and i'm just wiped out, i've hit > rock bottom with my emotions. Last night while giving stella her bath, > I just broke down, her little body which is tiny now she's on the diet, > is so beautiful and I can't imagine seeing those nasty scars on her > neck and chest, I know it's a chance for her, and it's only chance, but > it just kills me that there is nothing else. Our kids who are so > beautiful and loving and sweet, and just so innocent have to endure > this nasty disability and for stella and those kids who are having such > a tough time out there it's just not fair. She had an emergency eeg > last friday and it proved she was in status, not TC status but some sub > clinical status where she would have periods of no response, her head > would droop, she drool, her hands would twich, eyes and eyebrows > twitching, her legs or arms may jerk or her head would throw back > little myoclonics I guess, then there would be the odd TC thrown in > too. They put her on a huge dose of klonopin to try to stop the status > which it has done, but now she's a wreck, so emotional, can barely hold > her head up, is drooling all the time, cries when I walk out of the > room, can barely talk. I swear it's gone from bad to worse. What I > wouldn't do to trade places with her and take it all away. > So now i trying to figure out if I take her off the diet and let her > enjoy food again, or keep her on it with the vns. Her seizures for > those of you who don't know anything about her can range from one to > over 100 in a day, with regular status events. > Sorry about my emotional rambling, > amanda > > > Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal > and diamox, just weaned diazepam (yippeee). Still waiting for Stella > to be seizure free, but she's doing much better. Failed every med > available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > beautiful and a wonderful big sis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 , The research I have read on the diet says that the diet should not be used with diamox. You should try and get rid of the medications. Bill stansfield/lyonsfamily wrote: > Hi all, it's been ages since I've posted, life has been so hard lately. > Stella started the keto diet this year May 10th. It's been awful for > her, I think her seizures could not get any worse. She had 2 wonderful > weeks seperate of each other with no seizures, but the rest of the time > she's been seizing every day. And some days in status. She's due for > the vns on the 19th of this month, and i'm just wiped out, i've hit > rock bottom with my emotions. Last night while giving stella her bath, > I just broke down, her little body which is tiny now she's on the diet, > is so beautiful and I can't imagine seeing those nasty scars on her > neck and chest, I know it's a chance for her, and it's only chance, but > it just kills me that there is nothing else. Our kids who are so > beautiful and loving and sweet, and just so innocent have to endure > this nasty disability and for stella and those kids who are having such > a tough time out there it's just not fair. She had an emergency eeg > last friday and it proved she was in status, not TC status but some sub > clinical status where she would have periods of no response, her head > would droop, she drool, her hands would twich, eyes and eyebrows > twitching, her legs or arms may jerk or her head would throw back > little myoclonics I guess, then there would be the odd TC thrown in > too. They put her on a huge dose of klonopin to try to stop the status > which it has done, but now she's a wreck, so emotional, can barely hold > her head up, is drooling all the time, cries when I walk out of the > room, can barely talk. I swear it's gone from bad to worse. What I > wouldn't do to trade places with her and take it all away. > So now i trying to figure out if I take her off the diet and let her > enjoy food again, or keep her on it with the vns. Her seizures for > those of you who don't know anything about her can range from one to > over 100 in a day, with regular status events. > Sorry about my emotional rambling, > amanda > > > Mom to Stella, age 51/2, started keto diet May 10th 2004. On lamictal > and diamox, just weaned diazepam (yippeee). Still waiting for Stella > to be seizure free, but she's doing much better. Failed every med > available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > beautiful and a wonderful big sis. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Take everything with a grain of salt......although I would agree as a general rule, when we lost control after two years on the diet the ONLY thing that helped us regain it was to add a small amount of diamox. Which is why I cringe to see absoloute statements That being said, if you don't have control, I would agree to wean drugs before making a decision on whether diet is working , 's mom Bill Barber wrote: > , > > The research I have read on the diet says that the diet should not be > used with diamox. You should try and get rid of the medications. > > Bill > > > stansfield/lyonsfamily wrote: > > Hi all, it's been ages since I've posted, life has been so hard > lately. > > Stella started the keto diet this year May 10th. It's been awful > for > > her, I think her seizures could not get any worse. She had 2 > wonderful > > weeks seperate of each other with no seizures, but the rest of the > time > > she's been seizing every day. And some days in status. She's due > for > > the vns on the 19th of this month, and i'm just wiped out, i've hit > > rock bottom with my emotions. Last night while giving stella her > bath, > > I just broke down, her little body which is tiny now she's on the > diet, > > is so beautiful and I can't imagine seeing those nasty scars on her > > neck and chest, I know it's a chance for her, and it's only chance, > but > > it just kills me that there is nothing else. Our kids who are so > > beautiful and loving and sweet, and just so innocent have to endure > > this nasty disability and for stella and those kids who are having > such > > a tough time out there it's just not fair. She had an emergency eeg > > > last friday and it proved she was in status, not TC status but some > sub > > clinical status where she would have periods of no response, her > head > > would droop, she drool, her hands would twich, eyes and eyebrows > > twitching, her legs or arms may jerk or her head would throw back > > little myoclonics I guess, then there would be the odd TC thrown in > > too. They put her on a huge dose of klonopin to try to stop the > status > > which it has done, but now she's a wreck, so emotional, can barely > hold > > her head up, is drooling all the time, cries when I walk out of the > > room, can barely talk. I swear it's gone from bad to worse. What I > > > wouldn't do to trade places with her and take it all away. > > So now i trying to figure out if I take her off the diet and let her > > > enjoy food again, or keep her on it with the vns. Her seizures for > > those of you who don't know anything about her can range from one to > > > over 100 in a day, with regular status events. > > Sorry about my emotional rambling, > > amanda > > > > > > Mom to Stella, age 51/2, started keto diet May 10th 2004. On > lamictal > > and diamox, just weaned diazepam (yippeee). Still waiting for > Stella > > to be seizure free, but she's doing much better. Failed every med > > available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > > beautiful and a wonderful big sis. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 I guess the key word is " small " . Maybe that small amount was enough to tweak the acidity of the diet in your favour. Bill mmc@... wrote: > Take everything with a grain of salt......although I would agree as a > general rule, when we lost control after two years on the diet the ONLY > thing that helped us regain it was to add a small amount of diamox. > Which is why I cringe to see absoloute statements > That being said, if you don't have control, I would agree to wean drugs > before making a decision on whether diet is working > , 's mom > > Bill Barber wrote: > > >>, >> >>The research I have read on the diet says that the diet should not be >>used with diamox. You should try and get rid of the medications. >> >>Bill >> >> >>stansfield/lyonsfamily wrote: >> >>>Hi all, it's been ages since I've posted, life has been so hard >> >>lately. >> >>> Stella started the keto diet this year May 10th. It's been awful >> >>for >> >>>her, I think her seizures could not get any worse. She had 2 >> >>wonderful >> >>>weeks seperate of each other with no seizures, but the rest of the >> >>time >> >>>she's been seizing every day. And some days in status. She's due >> >>for >> >>>the vns on the 19th of this month, and i'm just wiped out, i've hit >>>rock bottom with my emotions. Last night while giving stella her >> >>bath, >> >>>I just broke down, her little body which is tiny now she's on the >> >>diet, >> >>>is so beautiful and I can't imagine seeing those nasty scars on her >>>neck and chest, I know it's a chance for her, and it's only chance, >> >>but >> >>>it just kills me that there is nothing else. Our kids who are so >>>beautiful and loving and sweet, and just so innocent have to endure >>>this nasty disability and for stella and those kids who are having >> >>such >> >>>a tough time out there it's just not fair. She had an emergency eeg >> >>>last friday and it proved she was in status, not TC status but some >> >>sub >> >>>clinical status where she would have periods of no response, her >> >>head >> >>>would droop, she drool, her hands would twich, eyes and eyebrows >>>twitching, her legs or arms may jerk or her head would throw back >>>little myoclonics I guess, then there would be the odd TC thrown in >>>too. They put her on a huge dose of klonopin to try to stop the >> >>status >> >>>which it has done, but now she's a wreck, so emotional, can barely >> >>hold >> >>>her head up, is drooling all the time, cries when I walk out of the >>>room, can barely talk. I swear it's gone from bad to worse. What I >> >>>wouldn't do to trade places with her and take it all away. >>>So now i trying to figure out if I take her off the diet and let her >> >>>enjoy food again, or keep her on it with the vns. Her seizures for >>>those of you who don't know anything about her can range from one to >> >>>over 100 in a day, with regular status events. >>>Sorry about my emotional rambling, >>>amanda >>> >>> >>>Mom to Stella, age 51/2, started keto diet May 10th 2004. On >> >>lamictal >> >>>and diamox, just weaned diazepam (yippeee). Still waiting for >> >>Stella >> >>>to be seizure free, but she's doing much better. Failed every med >>>available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, >>>beautiful and a wonderful big sis. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Dear , I'm very new to the diet, so I don't have any words of wisdom to give to you. Just know that we are thinking of you and Stella and hope that you find some answers soon. I have heard wonderful things about VNS! Leigh Sign up for Internet Service under $10 dollars a month, at https://signup.mybluelight.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Bill Barber wrote: > I guess the key word is " small " . Maybe that small amount was enough to > > tweak the acidity of the diet in your favour. > > Bill Yep, that was it. Didn't take much, in fact we had to cut original dose in half because it made her too acidic, stopped eating, started gagging and vomitting. Its just that each kid is so different, I remember Isabelle saying way back when that the diet and diamox could NEVER be mixed......never say never I geuss > > > mmc@... wrote: > > Take everything with a grain of salt......although I would agree as > a > > general rule, when we lost control after two years on the diet the > ONLY > > thing that helped us regain it was to add a small amount of diamox. > > Which is why I cringe to see absoloute statements > > That being said, if you don't have control, I would agree to wean > drugs > > before making a decision on whether diet is working > > , 's mom > > > > Bill Barber wrote: > > > > > >>, > >> > >>The research I have read on the diet says that the diet should not > be > >>used with diamox. You should try and get rid of the medications. > >> > >>Bill > >> > >> > >>stansfield/lyonsfamily wrote: > >> > >>>Hi all, it's been ages since I've posted, life has been so hard > >> > >>lately. > >> > >>> Stella started the keto diet this year May 10th. It's been awful > > >> > >>for > >> > >>>her, I think her seizures could not get any worse. She had 2 > >> > >>wonderful > >> > >>>weeks seperate of each other with no seizures, but the rest of the > >> > >>time > >> > >>>she's been seizing every day. And some days in status. She's due > >> > >>for > >> > >>>the vns on the 19th of this month, and i'm just wiped out, i've hit > > >>>rock bottom with my emotions. Last night while giving stella her > >> > >>bath, > >> > >>>I just broke down, her little body which is tiny now she's on the > >> > >>diet, > >> > >>>is so beautiful and I can't imagine seeing those nasty scars on her > > >>>neck and chest, I know it's a chance for her, and it's only chance, > > >> > >>but > >> > >>>it just kills me that there is nothing else. Our kids who are so > >>>beautiful and loving and sweet, and just so innocent have to endure > > >>>this nasty disability and for stella and those kids who are having > >> > >>such > >> > >>>a tough time out there it's just not fair. She had an emergency > eeg > >> > >>>last friday and it proved she was in status, not TC status but some > > >> > >>sub > >> > >>>clinical status where she would have periods of no response, her > >> > >>head > >> > >>>would droop, she drool, her hands would twich, eyes and eyebrows > >>>twitching, her legs or arms may jerk or her head would throw back > >>>little myoclonics I guess, then there would be the odd TC thrown in > > >>>too. They put her on a huge dose of klonopin to try to stop the > >> > >>status > >> > >>>which it has done, but now she's a wreck, so emotional, can barely > >> > >>hold > >> > >>>her head up, is drooling all the time, cries when I walk out of the > > >>>room, can barely talk. I swear it's gone from bad to worse. What > I > >> > >>>wouldn't do to trade places with her and take it all away. > >>>So now i trying to figure out if I take her off the diet and let > her > >> > >>>enjoy food again, or keep her on it with the vns. Her seizures for > > >>>those of you who don't know anything about her can range from one > to > >> > >>>over 100 in a day, with regular status events. > >>>Sorry about my emotional rambling, > >>>amanda > >>> > >>> > >>>Mom to Stella, age 51/2, started keto diet May 10th 2004. On > >> > >>lamictal > >> > >>>and diamox, just weaned diazepam (yippeee). Still waiting for > >> > >>Stella > >> > >>>to be seizure free, but she's doing much better. Failed every med > >>>available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > > >>>beautiful and a wonderful big sis. > >>> > >>> > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 That is why the protocol for the ketogenic diet at this hospital called for weaning this particular medication because of the serious health risks posed by the high acidity. Perhaps you achieved through this medication what might be possible by adjusting calories, ratio, etc. Bill mmc@... wrote: > Bill Barber wrote: > > >>I guess the key word is " small " . Maybe that small amount was enough to >> >>tweak the acidity of the diet in your favour. >> >>Bill > > > Yep, that was it. Didn't take much, in fact we had to cut original dose > in half because it made her too acidic, stopped eating, started gagging > and vomitting. > Its just that each kid is so different, I remember Isabelle saying way > back when that the diet and diamox could NEVER be mixed......never say > never I geuss > > > >> >>mmc@... wrote: >> >>>Take everything with a grain of salt......although I would agree as >> >>a >> >>>general rule, when we lost control after two years on the diet the >> >>ONLY >> >>>thing that helped us regain it was to add a small amount of diamox. >>>Which is why I cringe to see absoloute statements >>>That being said, if you don't have control, I would agree to wean >> >>drugs >> >>>before making a decision on whether diet is working >>>, 's mom >>> >>>Bill Barber wrote: >>> >>> >>> >>>>, >>>> >>>>The research I have read on the diet says that the diet should not >>> >>be >> >>>>used with diamox. You should try and get rid of the medications. >>>> >>>>Bill >>>> >>>> >>>>stansfield/lyonsfamily wrote: >>>> >>>> >>>>>Hi all, it's been ages since I've posted, life has been so hard >>>> >>>>lately. >>>> >>>> >>>>> Stella started the keto diet this year May 10th. It's been awful >>>> >>>>for >>>> >>>> >>>>>her, I think her seizures could not get any worse. She had 2 >>>> >>>>wonderful >>>> >>>> >>>>>weeks seperate of each other with no seizures, but the rest of the >>>> >>>>time >>>> >>>> >>>>>she's been seizing every day. And some days in status. She's due >>>> >>>>for >>>> >>>> >>>>>the vns on the 19th of this month, and i'm just wiped out, i've hit >>>> >>>>>rock bottom with my emotions. Last night while giving stella her >>>> >>>>bath, >>>> >>>> >>>>>I just broke down, her little body which is tiny now she's on the >>>> >>>>diet, >>>> >>>> >>>>>is so beautiful and I can't imagine seeing those nasty scars on her >>>> >>>>>neck and chest, I know it's a chance for her, and it's only chance, >>>> >>>>but >>>> >>>> >>>>>it just kills me that there is nothing else. Our kids who are so >>>>>beautiful and loving and sweet, and just so innocent have to endure >>>> >>>>>this nasty disability and for stella and those kids who are having >>>> >>>>such >>>> >>>> >>>>>a tough time out there it's just not fair. She had an emergency >>>> >>eeg >> >>>>>last friday and it proved she was in status, not TC status but some >>>> >>>>sub >>>> >>>> >>>>>clinical status where she would have periods of no response, her >>>> >>>>head >>>> >>>> >>>>>would droop, she drool, her hands would twich, eyes and eyebrows >>>>>twitching, her legs or arms may jerk or her head would throw back >>>>>little myoclonics I guess, then there would be the odd TC thrown in >>>> >>>>>too. They put her on a huge dose of klonopin to try to stop the >>>> >>>>status >>>> >>>> >>>>>which it has done, but now she's a wreck, so emotional, can barely >>>> >>>>hold >>>> >>>> >>>>>her head up, is drooling all the time, cries when I walk out of the >>>> >>>>>room, can barely talk. I swear it's gone from bad to worse. What >>>> >>I >> >>>>>wouldn't do to trade places with her and take it all away. >>>>>So now i trying to figure out if I take her off the diet and let >>>> >>her >> >>>>>enjoy food again, or keep her on it with the vns. Her seizures for >>>> >>>>>those of you who don't know anything about her can range from one >>>> >>to >> >>>>>over 100 in a day, with regular status events. >>>>>Sorry about my emotional rambling, >>>>>amanda >>>>> >>>>> >>>>>Mom to Stella, age 51/2, started keto diet May 10th 2004. On >>>> >>>>lamictal >>>> >>>> >>>>>and diamox, just weaned diazepam (yippeee). Still waiting for >>>> >>>>Stella >>>> >>>> >>>>>to be seizure free, but she's doing much better. Failed every med >>>>>available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, >>>> >>>>>beautiful and a wonderful big sis. >>>>> >>>>> >>>>> >>>>> Quote Link to comment Share on other sites More sharing options...
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