Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 and , Sebashtian is not yet on the Keto diet. The doctors would not consider it until they have tried everything possible for him through drugs. He is currently on the highest dosage for his age of Vigabatrin (also known as Sabril), B6, (high dosage of )Phenobarbital, and Clonazepam (I believe that is another name for Keppra). He is still getting the seizures. Tried: He has been on Valproic acid, but for some reason he reacted worst towards that drug, he increased in the amount of seizures in about the clusters of 30 infantile spasms twice a day and were also very strong that he would cry after each one. History: He began getting seizures at the age of 8 months, he is about to turn 1 yr on Sunday. He had a bleed in the Thalamus area, is missing a Corpus Colasaum, and on the right side of the brian is much smaller than his left. All this happen while still in the womb. Doctors don't know why this happen to him, only that I had a sickness called ulcerative colitis, where the immune system attacks itself. They think that my body attacked him. Thank you for the website. I will certainly check it out. If you have any other suggestions, I would surely appriciate it. -Christy Christy- This was suggested to me once, because my son was so dependent on ACTH and we were trying to find something that old back the seizures. Just at thought! From what I read from you and all the literature.......it seems to me that your best chance would be to ether go with Valproic Acid......which would not be my first choice but is certainly very effective. Or Vigabatrin if you have not tried that yet. I would think Vigabatrin would work the best for you, because it sounds like ACTH did not completely help him. Also go to the web site below, its all children with seizures, what parents have tried, with what effect. You can search by age, medications and so on. Maybe you will find a similar situation. Let me know if it helps. http://www.kidsepilepsy.com/ , mom to Ethan 2/2003-4/2004 Re: -(HELP!)Infantile Spasms/ Sabril , Keppra did not work on him....well it does control him physically ....but he still having them. I can tell through his eyes. I spoke to the doctor on Monday....he is referring him to the Blue Bird Hospital in Houston, TX. I don't know what else to do....I do not want him on the ACTH shots because of all the possible risk factors. -Christy HEATHER JACKSON jackson6542@...> wrote:Christy: Others we've tried for myoclonics depakote, keppra, lamictal, acth injections,(this one is the only one that worked - he was 26 days seizure free) clonopin, zonegram, b6, (HELP!)Infantile Spasms/ Sabril > > My baby is at the max of dosage on Sabril, also taking a large amount of Pheonobarbital, and he is also taking vitamin B12; unfortunately, he still continues to have a lot of siezures. Now he is getting them at night, not that he never has, but they were not noticable. They hit him hard and he cries every time he has one. He is having about 50 spasm attacks in one day, everyday, and they usually happen all at once! > > > He has been on Valproic Acid, but that didn't work. > > > Please, someone help.....it hurts to see him go through this.....I just want them to stop! > (God, Help HIM) > > -Christy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Dear Christy I would recommend you read the newest (2000) edition of The Ketogenic Diet book by Dr. Freeman. There are definitely some types of seizure problems that respond well to the keto diet and then you will have an idea if the diet may work for your son. As far as trying every drug, the keto list parents are a wealth of info on all the AEDs, but what you soon find out is that what works for one child does not necessarily work for the other one. It can be an almost endless combination of drugs that will be tried. Generally speaking, if the first one doesn't work, or the second, the chances diminish that one will work. All that said, most start their children on the diet while the child is still taking drugs. Kind of a paradox of sorts... If you read the book and feel like it may give your son a chance, you may wish to " push " for the diet, even if he is responding to drug therapy. It does not sound like he is so far. For my daughter, when a new AED was tried it would seem to be working (never 100%) at first, so when the seizures came it was increased, then more, then more... None ever really worked. Just a honeymoon period at first, and hopes were high. When I finally took her off meds, she was seizure free for five months, but then the seizures returned. On drugs she was having grand mal seizures every hour. She would not eat; quit walking and began to crawl; drooled and was basically " out of it " all day, every day. She lived a nightmare. When the drug wean began, within two days the seizures diminished. The wean took three weeks, I think, and at the end she stopped seizuring. A couple of weeks later she had two episodes of shaking for about 20 seconds each..............then no seizures for 5 months. Drugs just never did it for her. What a nightmare. Learn about the diet. Try to find out if it has been used successfully with a child having the problems you son has. I can feel your frustration and terror. It is awful what these children go through, I know. It would be wonderful if he can get relief from the seizures soon. Maybe the diet is something you can try. I hope so. , 's mumma (keto kid since May 04) CHRISTY VELA christysebas@...> wrote: and , Sebashtian is not yet on the Keto diet. The doctors would not consider it until they have tried everything possible for him through drugs. He is currently on the highest dosage for his age of Vigabatrin (also known as Sabril), B6, (high dosage of )Phenobarbital, and Clonazepam (I believe that is another name for Keppra). He is still getting the seizures. Tried: He has been on Valproic acid, but for some reason he reacted worst towards that drug, he increased in the amount of seizures in about the clusters of 30 infantile spasms twice a day and were also very strong that he would cry after each one. History: He began getting seizures at the age of 8 months, he is about to turn 1 yr on Sunday. He had a bleed in the Thalamus area, is missing a Corpus Colasaum, and on the right side of the brian is much smaller than his left. All this happen while still in the womb. Doctors don't know why this happen to him, only that I had a sickness called ulcerative colitis, where the immune system attacks itself. They think that my body attacked him. Thank you for the website. I will certainly check it out. If you have any other suggestions, I would surely appriciate it. -Christy Christy- This was suggested to me once, because my son was so dependent on ACTH and we were trying to find something that old back the seizures. Just at thought! From what I read from you and all the literature.......it seems to me that your best chance would be to ether go with Valproic Acid......which would not be my first choice but is certainly very effective. Or Vigabatrin if you have not tried that yet. I would think Vigabatrin would work the best for you, because it sounds like ACTH did not completely help him. Also go to the web site below, its all children with seizures, what parents have tried, with what effect. You can search by age, medications and so on. Maybe you will find a similar situation. Let me know if it helps. http://www.kidsepilepsy.com/ , mom to Ethan 2/2003-4/2004 Re: -(HELP!)Infantile Spasms/ Sabril , Keppra did not work on him....well it does control him physically ....but he still having them. I can tell through his eyes. I spoke to the doctor on Monday....he is referring him to the Blue Bird Hospital in Houston, TX. I don't know what else to do....I do not want him on the ACTH shots because of all the possible risk factors. -Christy HEATHER JACKSON jackson6542@...> wrote:Christy: Others we've tried for myoclonics depakote, keppra, lamictal, acth injections,(this one is the only one that worked - he was 26 days seizure free) clonopin, zonegram, b6, (HELP!)Infantile Spasms/ Sabril > > My baby is at the max of dosage on Sabril, also taking a large amount of Pheonobarbital, and he is also taking vitamin B12; unfortunately, he still continues to have a lot of siezures. Now he is getting them at night, not that he never has, but they were not noticable. They hit him hard and he cries every time he has one. He is having about 50 spasm attacks in one day, everyday, and they usually happen all at once! > > > He has been on Valproic Acid, but that didn't work. > > > Please, someone help.....it hurts to see him go through this.....I just want them to stop! > (God, Help HIM) > > -Christy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 hi christy, if you can i would find another neuro and get another opinion. we had the same thing, some neuros just don't want to know about the keto diet. it sounds like sebashtian is on a lot of aeds for his age. if your neuro is like the one we had, he will try every drug, then mix them up in different combinations, try experimental drugs. ours did that for 5 yrs until we said, enough! we then found a doc that was prepared to wean him off meds (this took 18 months) and he was better than he ever was on aeds. just remember that you are paying the neuro so make sure they do the best for your son. hope things get better soon. cheers, andrea. --- CHRISTY VELA christysebas@...> wrote: > > and , > Sebashtian is not yet on the Keto diet. The > doctors would not consider it until they have tried > everything possible for him through drugs. He is > currently on the highest dosage for his age of > Vigabatrin (also known as Sabril), B6, (high dosage > of )Phenobarbital, and Clonazepam (I believe that is > another name for Keppra). He is still getting the > seizures. > > Tried: > He has been on Valproic acid, but for some > reason he reacted worst towards that drug, he > increased in the amount of seizures in about the > clusters of 30 infantile spasms twice a day and were > also very strong that he would cry after each one. > > History: > He began getting seizures at the age of 8 > months, he is about to turn 1 yr on Sunday. He had > a bleed in the Thalamus area, is missing a Corpus > Colasaum, and on the right side of the brian is much > smaller than his left. All this happen while still > in the womb. > > Doctors don't know why this happen to him, > only that I had a sickness called ulcerative > colitis, where the immune system attacks itself. > They think that my body attacked him. > > > Thank you for the website. I will certainly check > it out. If you have any other suggestions, I would > surely appriciate it. > > > -Christy > > > > > > Christy- > > > > This was suggested to me once, because my son was so > dependent on ACTH > and we were trying to find something that old back > the seizures. Just > at thought! > > > > From what I read from you and all the > literature.......it seems to me > that your best chance would be to ether go with > Valproic Acid......which > would not be my first choice but is certainly very > effective. Or > Vigabatrin if you have not tried that yet. I would > think Vigabatrin > would work the best for you, because it sounds like > ACTH did not > completely help him. > > > > Also go to the web site below, its all children with > seizures, what > parents have tried, with what effect. You can search > by age, medications > and so on. Maybe you will find a similar situation. > Let me know if it > helps. > > > > http://www.kidsepilepsy.com/ > > > > , mom to Ethan > > 2/2003-4/2004 > > > > > > > > Re: -(HELP!)Infantile > Spasms/ Sabril > > > > , > Keppra did not work on him....well it does > control him physically > ...but he still having them. I can tell through his > eyes. I spoke to > the doctor on Monday....he is referring him to the > Blue Bird Hospital in > Houston, TX. I don't know what else to do....I do > not want him on the > ACTH shots because of all the possible risk factors. > > -Christy > > > > HEATHER JACKSON jackson6542@...> wrote:Christy: > > Others we've tried for myoclonics > depakote, keppra, lamictal, acth injections,(this > one is the only one > that worked - he was 26 days seizure free) clonopin, > zonegram, b6, > > > (HELP!)Infantile Spasms/ > Sabril > > > > > > My baby is at the max of dosage on Sabril, also > taking a large > amount of > Pheonobarbital, and he is also taking vitamin B12; > unfortunately, he > still > continues to have a lot of siezures. Now he is > getting them at night, > not > that he never has, but they were not noticable. > They hit him hard and > he > cries every time he has one. He is having about > 50 spasm attacks in > one > day, everyday, and they usually happen all at > once! > > > > > > He has been on Valproic Acid, but that didn't > work. > > > > > > Please, someone help.....it hurts to see him go > through this.....I > just > want them to stop! > > (God, Help HIM) > > > > -Christy > > > > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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