Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Wow, what a story. . .and good for you for standing up for your daughter and researching on your own to do what's best for her. Welcome to our group -- there's much to learn here. You didn't say -- are you also considering the keto diet? Sounds like you're doing well now, but that's always another " empowering " option!--D __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 What a fantastic story! We started using the flax oil but then heard that it can cause seizures in some children so we decided to cut it out for a bit to see if it made any difference. Neat to hear such a success story! I have a book called " Treating Epilepsy Naturally " by and Blaylock and they mention that a dr treated several children with vitamin E with good success. I am about to order another book by Blaylock called " Excitotoxins: The Taste That Kills " . Will have to look up Udo's book also. Welcome to the list! Kathy (Mom to lin, 3 1/2 years old, idiopathic generalized epilepsy) Astrid > Hello everyone. I am so happy to find you people, I am at the > beginning of a very exiting journey with my daughter Astrid and I > hope to share developments with you and hopefully learn from you wise > people. I should start by telling you a little about us and where we > are at. > > My name is , I live in England in the UK with my partner Jonny > and daughters, Astrid 4yrs and Madeline 9 months. Astrid has a > seizure disorder (current diagnosis 'refractory complex partial > seizure disorder'), developmental delay and ataxia. She started > having seizures (complex partial with secondary generalisation) at 8 > mths old. Her seizures are completely intractable to medication, > often working initially, but what seizure control is gained is always > lost later. At her worst Astrid fits every 2 minutes (effectively in > status) and nocturnal seizures are usually more prevalent. The drugs > tried so far are (in no particular order); Carbamazepine, Sodium > Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine, epam, > Clobazam, Lorazepam, Clonazepam, Paraldehyde, Prednisolone, > Oxcarbazepine, Pheobarbital. She is currently on, per day, > Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine 225mg, Pyridoxine > 200mg and Clobazam being withdrawn currently at 12mg per day. > > I will take a moment here to explain the role of pyridoxine. At one > point in Astrid's care, during a hospital stay, pyridoxine was > started with an IV loading dose. Her seizures dramatically and > suddenly stopped. She was diagnosed with pyridoxine dependant > seizures and sent home. This lasted for a few months until the > seizures returned (as they always do) so the pyridoxine was > discontinued. This was re-started a few months ago in a desperate > attempt to regain control but with no effect. > > Astrid has had many hospital stays including ICU twice. She has had > many EEG's which have ranged from 'zero seizure activity' to 'severe > encephalitis' (which she quite obviously did not have; Two MRI scans > showing 'slight asymmetry of the frontal horns' which seems to have > no clinical significance; Blood tests for metabolic disorders (all > negative); SPECT scan showing some areas of abnormal function; Lumbar > puncture which was 'essentially normal' and the 'Woods Light' test - > nothing found. > > I mentioned earlier that each time seizure control is gained it > always lost again. The amount of seizures will always increase > gradually and her appetite decreases in direct correlation to the > number of seizures until she is having them all day and night and her > appetite has disappeared. This is the point that we end up in > hospital on IV fluids, bolus feeds and enough drugs to make a junkie > jealous ;-). This time was different. > > Her seizures were increasing (at about 20 per day) and her appetite > decreasing till it looked like another visit to the hospital was > inevitable (the next plan is to remove Oxcarbazepine and start > Keppra). I read on my Home Education Special Needs list that people > were supplementing their children's diet with flax oil and other > essential fatty acids and were getting results with behavioural > problems and learning difficulties, so after some research I excluded > Evening Primrose Oil as this seemed to cause seizures in prone > children, and decided upon flax oil due to the high proportion of w3 > fatty acids, so I began giving her 10mls per day with anti-oxidant > vitamin E 200iu (to aid the metabolism of the flax), hoping to see > improvements in behavior, learning and speech. The results were > beyond my wildest dreams. The very next day she had only 2 or 3 > seizures, the following day only 1 and after 3 days of starting the > flax oil she was seizure free! I am aware that this may have been a > co-incidence but as I have mentioned, deterioration in seizure > control has only ever been stopped by hospital admission and weeks of > drug experimentation. I consider this to be a small (though not so > small to us) miracle and I cannot believe that her fits have stopped > without the horror of being in hospital. > > So, I have begun to research the role of fatty acids in neurological > disorders and found that flax oil has been shown to improve seizures > and that a deficiency in vit E has been show to cause seizures, so we > do not know as yet whether we have this result from flax or from vit > E or both. I know how to find out, but I don't want to change > anything at the moment as we are enjoying being seizure free (apart > from the odd `flicker'). I am now on a quest for information, I will > stop at nothing to get Astrid as well as she can be and to get her > off as many drugs as possible as I am sure they contribute to, if not > cause her ataxia and development/behavior problems. I now have full > confidence in nutritional therapies and am becoming increasingly > sceptical of allopathic medicine. I have decided to consult a > naturopath as I want to optimise Astrid's nutritional state, > including counteracting any deficiencies caused by her medication. > > I am currently reading Udo's `fats that kill, fats that heal.', and > enjoying learning chemistry with a purpose! I would really value > input from you guys as I am unsure where to go next, what books have > you read that has helped you in your quest for health, recommended > websites, relevant studies, anything and everything, not to mention > the value of your experience. > > Our life has at times been extremely difficult and I had resigned > myself to a lifetime of drugs and hospitals. I so desperately want > Astrid to be the person she really is, inside, and would give > anything, do anything to make her well. I am so exited to at last be > pro-active in her care, it felt so difficult, and wrong to be so, > well, hopeless. I would stand by and believe that the doctors were > doing the very best for her as they gave her drug after drug, and > while I do not doubt their intentions, I see now that the holistic > approach stands a better chance. I really look forward to sharing > with you, thankyou for taking the time to read this. > > Love > > > > " 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 December 28, 2001 Report Share Posted December 28, 2001 Hi ..... and welcome. You didn't say how long ago you started the flax oil and E...... that's great that you've had such success with it! What promise! It is wonderful to find that strength within and feel like you have found something on your own to help your daughter. Now, if only you can slowly but surely get rid of all the drugs.... what a miracle that would be! I'm reading Udo Erasmus's book right now, too..... I've had it out from the library forever and keep renewing it. (Now who will give me the time to read????). Your story is thrilling and encouraging. I've got to go for now but wanted to say hello...... and greet you as a fellow special needs homeschooler. I've been homeschooling my three other older kids (all typically developing) over the past 16 years. Now, Katera, my special one.... is my only homeschooler this year. Patti, mom to Katera, age 5 (ACC, microcephaly, global delays) Keto Kid since 10-10-2000. Astrid Hello everyone. I am so happy to find you people, I am at the beginning of a very exiting journey with my daughter Astrid and I hope to share developments with you and hopefully learn from you wise people. I should start by telling you a little about us and where we are at. My name is , I live in England in the UK with my partner Jonny and daughters, Astrid 4yrs and Madeline 9 months. Astrid has a seizure disorder (current diagnosis 'refractory complex partial seizure disorder'), developmental delay and ataxia. She started having seizures (complex partial with secondary generalisation) at 8 mths old. Her seizures are completely intractable to medication, often working initially, but what seizure control is gained is always lost later. At her worst Astrid fits every 2 minutes (effectively in status) and nocturnal seizures are usually more prevalent. The drugs tried so far are (in no particular order); Carbamazepine, Sodium Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine, epam, Clobazam, Lorazepam, Clonazepam, Paraldehyde, Prednisolone, Oxcarbazepine, Pheobarbital. She is currently on, per day, Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine 225mg, Pyridoxine 200mg and Clobazam being withdrawn currently at 12mg per day.I will take a moment here to explain the role of pyridoxine. At one point in Astrid's care, during a hospital stay, pyridoxine was started with an IV loading dose. Her seizures dramatically and suddenly stopped. She was diagnosed with pyridoxine dependant seizures and sent home. This lasted for a few months until the seizures returned (as they always do) so the pyridoxine was discontinued. This was re-started a few months ago in a desperate attempt to regain control but with no effect.Astrid has had many hospital stays including ICU twice. She has had many EEG's which have ranged from 'zero seizure activity' to 'severe encephalitis' (which she quite obviously did not have; Two MRI scans showing 'slight asymmetry of the frontal horns' which seems to have no clinical significance; Blood tests for metabolic disorders (all negative); SPECT scan showing some areas of abnormal function; Lumbar puncture which was 'essentially normal' and the 'Woods Light' test - nothing found.I mentioned earlier that each time seizure control is gained it always lost again. The amount of seizures will always increase gradually and her appetite decreases in direct correlation to the number of seizures until she is having them all day and night and her appetite has disappeared. This is the point that we end up in hospital on IV fluids, bolus feeds and enough drugs to make a junkie jealous ;-). This time was different.Her seizures were increasing (at about 20 per day) and her appetite decreasing till it looked like another visit to the hospital was inevitable (the next plan is to remove Oxcarbazepine and start Keppra). I read on my Home Education Special Needs list that people were supplementing their children's diet with flax oil and other essential fatty acids and were getting results with behavioural problems and learning difficulties, so after some research I excluded Evening Primrose Oil as this seemed to cause seizures in prone children, and decided upon flax oil due to the high proportion of w3 fatty acids, so I began giving her 10mls per day with anti-oxidant vitamin E 200iu (to aid the metabolism of the flax), hoping to see improvements in behavior, learning and speech. The results were beyond my wildest dreams. The very next day she had only 2 or 3 seizures, the following day only 1 and after 3 days of starting the flax oil she was seizure free! I am aware that this may have been a co-incidence but as I have mentioned, deterioration in seizure control has only ever been stopped by hospital admission and weeks of drug experimentation. I consider this to be a small (though not so small to us) miracle and I cannot believe that her fits have stopped without the horror of being in hospital.So, I have begun to research the role of fatty acids in neurological disorders and found that flax oil has been shown to improve seizures and that a deficiency in vit E has been show to cause seizures, so we do not know as yet whether we have this result from flax or from vit E or both. I know how to find out, but I don't want to change anything at the moment as we are enjoying being seizure free (apart from the odd `flicker'). I am now on a quest for information, I will stop at nothing to get Astrid as well as she can be and to get her off as many drugs as possible as I am sure they contribute to, if not cause her ataxia and development/behavior problems. I now have full confidence in nutritional therapies and am becoming increasingly sceptical of allopathic medicine. I have decided to consult a naturopath as I want to optimise Astrid's nutritional state, including counteracting any deficiencies caused by her medication. I am currently reading Udo's `fats that kill, fats that heal.', and enjoying learning chemistry with a purpose! I would really value input from you guys as I am unsure where to go next, what books have you read that has helped you in your quest for health, recommended websites, relevant studies, anything and everything, not to mention the value of your experience. Our life has at times been extremely difficult and I had resigned myself to a lifetime of drugs and hospitals. I so desperately want Astrid to be the person she really is, inside, and would give anything, do anything to make her well. I am so exited to at last be pro-active in her care, it felt so difficult, and wrong to be so, well, hopeless. I would stand by and believe that the doctors were doing the very best for her as they gave her drug after drug, and while I do not doubt their intentions, I see now that the holistic approach stands a better chance. I really look forward to sharing with you, thankyou for taking the time to read this.Love "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 December 29, 2001 Report Share Posted December 29, 2001 Are there any precautions to using flax oil? Other than the possibility that it may cause seizures in some kids. How much would you use? Is there nutritional info available? Jenn wrote: Thanks Kathy - I'll certainly check those books out. Unfortunately Astrid had 3 seizures today, it has just struck me that for the last 2 weeks (since we started the flax) she has not been eating very much at all due to flu and cold's, could it be that she had been in ketosis? She has stopped eating before though, for weeks - due to seizures and they have not stopped spontaneously, then again she wasn't on the flax. So much to think about - so many variables. > -------Original message------- > From "Kathy Greenwood" > Date 28/12/2001 20:29:34 > > > > > > What a fantastic story! We started using the flax oil but then heard that > > it can cause seizures in some children so we decided to cut it out for a bit > > to see if it made any difference. Neat to hear such a success story! I > > have a book called "Treating Epilepsy Naturally" by and > > Blaylock and they mention that a dr treated several children with > > vitamin E with good success. I am about to order another book by > > Blaylock called "Excitotoxins: The Taste That Kills". Will have to look up > > Udo's book also. > > > > Welcome to the list! > > > > Kathy (Mom to lin, 3 1/2 years old, idiopathic generalized epilepsy) > > > > Astrid > > > > > > > Hello everyone. I am so happy to find you people, I am at the > > > beginning of a very exiting journey with my daughter Astrid and I > > > hope to share developments with you and hopefully learn from you wise > > > people. I should start by telling you a little about us and where we > > > are at. > > > > > > My name is , I live in England in the UK with my partner Jonny > > > and daughters, Astrid 4yrs and Madeline 9 months. Astrid has a > > > seizure disorder (current diagnosis 'refractory complex partial > > > seizure disorder'), developmental delay and ataxia. She started > > > having seizures (complex partial with secondary generalisation) at 8 > > > mths old. Her seizures are completely intractable to medication, > > > often working initially, but what seizure control is gained is always > > > lost later. At her worst Astrid fits every 2 minutes (effectively in > > > status) and nocturnal seizures are usually more prevalent. The drugs > > > tried so far are (in no particular order); Carbamazepine, Sodium > > > Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine, epam, > > > Clobazam, Lorazepam, Clonazepam, Paraldehyde, Prednisolone, > > > Oxcarbazepine, Pheobarbital. She is currently on, per day, > > > Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine 225mg, Pyridoxine > > > 200mg and Clobazam being withdrawn currently at 12mg per day. > > > > > > I will take a moment here to explain the role of pyridoxine. At one > > > point in Astrid's care, during a hospital stay, pyridoxine was > > > started with an IV loading dose. Her seizures dramatically and > > > suddenly stopped. She was diagnosed with pyridoxine dependant > > > seizures and sent home. This lasted for a few months until the > > > seizures returned (as they always do) so the pyridoxine was > > > discontinued. This was re-started a few months ago in a desperate > > > attempt to regain control but with no effect. > > > > > > Astrid has had many hospital stays including ICU twice. She has had > > > many EEG's which have ranged from 'zero seizure activity' to 'severe > > > encephalitis' (which she quite obviously did not have; Two MRI scans > > > showing 'slight asymmetry of the frontal horns' which seems to have > > > no clinical significance; Blood tests for metabolic disorders (all > > > negative); SPECT scan showing some areas of abnormal function; Lumbar > > > puncture which was 'essentially normal' and the 'Woods Light' test - > > > nothing found. > > > > > > I mentioned earlier that each time seizure control is gained it > > > always lost again. The amount of seizures will always increase > > > gradually and her appetite decreases in direct correlation to the > > > number of seizures until she is having them all day and night and her > > > appetite has disappeared. This is the point that we end up in > > > hospital on IV fluids, bolus feeds and enough drugs to make a junkie > > > jealous ;-). This time was different. > > > > > > Her seizures were increasing (at about 20 per day) and her appetite > > > decreasing till it looked like another visit to the hospital was > > > inevitable (the next plan is to remove Oxcarbazepine and start > > > Keppra). I read on my Home Education Special Needs list that people > > > were supplementing their children's diet with flax oil and other > > > essential fatty acids and were getting results with behavioural > > > problems and learning difficulties, so after some research I excluded > > > Evening Primrose Oil as this seemed to cause seizures in prone > > > children, and decided upon flax oil due to the high proportion of w3 > > > fatty acids, so I began giving her 10mls per day with anti- oxidant > > > vitamin E 200iu (to aid the metabolism of the flax), hoping to see > > > improvements in behavior, learning and speech. The results were > > > beyond my wildest dreams. The very next day she had only 2 or 3 > > > seizures, the following day only 1 and after 3 days of starting the > > > flax oil she was seizure free! I am aware that this may have been a > > > co-incidence but as I have mentioned, deterioration in seizure > > > control has only ever been stopped by hospital admission and weeks of > > > drug experimentation. I consider this to be a small (though not so > > > small to us) miracle and I cannot believe that her fits have stopped > > > without the horror of being in hospital. > > > > > > So, I have begun to research the role of fatty acids in neurological > > > disorders and found that flax oil has been shown to improve seizures > > > and that a deficiency in vit E has been show to cause seizures, so we > > > do not know as yet whether we have this result from flax or from vit > > > E or both. I know how to find out, but I don't want to change > > > anything at the moment as we are enjoying being seizure free (apart > > > from the odd `flicker'). I am now on a quest for information, I will > > > stop at nothing to get Astrid as well as she can be and to get her > > > off as many drugs as possible as I am sure they contribute to, if not > > > cause her ataxia and development/behavior problems. I now have full > > > confidence in nutritional therapies and am becoming increasingly > > > sceptical of allopathic medicine. I have decided to consult a > > > naturopath as I want to optimise Astrid's nutritional state, > > > including counteracting any deficiencies caused by her medication. > > > > > > I am currently reading Udo's `fats that kill, fats that heal.', and > > > enjoying learning chemistry with a purpose! I would really value > > > input from you guys as I am unsure where to go next, what books have > > > you read that has helped you in your quest for health, recommended > > > websites, relevant studies, anything and everything, not to mention > > > the value of your experience. > > > > > > Our life has at times been extremely difficult and I had resigned > > > myself to a lifetime of drugs and hospitals. I so desperately want > > > Astrid to be the person she really is, inside, and would give > > > anything, do anything to make her well. I am so exited to at last be > > > pro-active in her care, it felt so difficult, and wrong to be so, > > > well, hopeless. I would stand by and believe that the doctors were > > > doing the very best for her as they gave her drug after drug, and > > > while I do not doubt their intentions, I see now that the holistic > > > approach stands a better chance. I really look forward to sharing > > > with you, thankyou for taking the time to read this. > > > > > > Love > > > > > > > > > > > > "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 December 30, 2001 Report Share Posted December 30, 2001 Hi Jenn, I've read a lot about flax oil these last couple of weeks but nothing to suggest it may *cause* seizures, I'd be interested to learn more about this. I was aware that EPO could exaserbate seizures, so have avoided it. The suggested dose is between 1 tsp and 2 tbsps (5-20mls) and you just see what works for you. We are giving Astrid 10mls (1 tbsp) per day with 400iu vitamin E. Flax needs antioxidants like E and C to metabolise , but it all depends on which nutrients you think your child is deficient in. I also give a good liquid multi vitamin because her eating habits are erratic. It is also important to get the right balance between w3 and w6 fatty acids. I'll paste in a link, for more do a search on essential fatty acids at www.google.com. http://www.explorepub.com/articles/nutrition1.html > > > Thanks Kathy - I'll certainly check those books out. > > Unfortunately Astrid had 3 seizures today, it has just struck me > > that for the last 2 weeks (since we started the flax) she has > > not been eating very much at all due to flu and cold's, could it > > be that she had been in ketosis? She has stopped eating > > before though, for weeks - due to seizures and they have not > > stopped spontaneously, then again she wasn't on the flax. So > > much to think about - so many variables. > > > > > > > > > > > -------Original message------- > > > From " Kathy Greenwood " <malinois@m...> > > > Date 28/12/2001 20:29:34 > > > > > > > > > > > > > > > > > > What a fantastic story! We started using the flax oil but then > > heard that > > > > > > it can cause seizures in some children so we decided to cut it > > out for a bit > > > > > > to see if it made any difference. Neat to hear such a > > success story! I > > > > > > have a book called " Treating Epilepsy Naturally " by > > and > > > > > > Blaylock and they mention that a dr treated several > > children with > > > > > > vitamin E with good success. I am about to order another > > book by > > > > > > Blaylock called " Excitotoxins: The Taste That Kills " . Will > > have to look up > > > > > > Udo's book also. > > > > > > > > > > > > Welcome to the list! > > > > > > > > > > > > Kathy (Mom to lin, 3 1/2 years old, idiopathic > > generalized epilepsy) > > > > > > > > > > > > Astrid > > > > > > > > > > > > > > > > > > > Hello everyone. I am so happy to find you people, I am at > > the > > > > > > > beginning of a very exiting journey with my daughter > > Astrid and I > > > > > > > hope to share developments with you and hopefully learn > > from you wise > > > > > > > people. I should start by telling you a little about us and > > where we > > > > > > > are at. > > > > > > > > > > > > > > My name is , I live in England in the UK with my > > partner Jonny > > > > > > > and daughters, Astrid 4yrs and Madeline 9 months. Astrid > > has a > > > > > > > seizure disorder (current diagnosis 'refractory complex > > partial > > > > > > > seizure disorder'), developmental delay and ataxia. She > > started > > > > > > > having seizures (complex partial with secondary > > generalisation) at 8 > > > > > > > mths old. Her seizures are completely intractable to > > medication, > > > > > > > often working initially, but what seizure control is gained is > > always > > > > > > > lost later. At her worst Astrid fits every 2 minutes > > (effectively in > > > > > > > status) and nocturnal seizures are usually more prevalent. > > The drugs > > > > > > > tried so far are (in no particular order); Carbamazepine, > > Sodium > > > > > > > Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine, > > epam, > > > > > > > Clobazam, Lorazepam, Clonazepam, Paraldehyde, > > Prednisolone, > > > > > > > Oxcarbazepine, Pheobarbital. She is currently on, per day, > > > > > > > Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine > > 225mg, Pyridoxine > > > > > > > 200mg and Clobazam being withdrawn currently at 12mg > > per day. > > > > > > > > > > > > > > I will take a moment here to explain the role of > > pyridoxine. At one > > > > > > > point in Astrid's care, during a hospital stay, pyridoxine > > was > > > > > > > started with an IV loading dose. Her seizures dramatically > > and > > > > > > > suddenly stopped. She was diagnosed with pyridoxine > > dependant > > > > > > > seizures and sent home. This lasted for a few months until > > the > > > > > > > seizures returned (as they always do) so the pyridoxine > > was > > > > > > > discontinued. This was re-started a few months ago in a > > desperate > > > > > > > attempt to regain control but with no effect. > > > > > > > > > > > > > > Astrid has had many hospital stays including ICU twice. > > She has had > > > > > > > many EEG's which have ranged from 'zero seizure activity' > > to 'severe > > > > > > > encephalitis' (which she quite obviously did not have; Two > > MRI scans > > > > > > > showing 'slight asymmetry of the frontal horns' which > > seems to have > > > > > > > no clinical significance; Blood tests for metabolic disorders > > (all > > > > > > > negative); SPECT scan showing some areas of abnormal > > function; Lumbar > > > > > > > puncture which was 'essentially normal' and the 'Woods > > Light' test - > > > > > > > nothing found. > > > > > > > > > > > > > > I mentioned earlier that each time seizure control is > > gained it > > > > > > > always lost again. The amount of seizures will always > > increase > > > > > > > gradually and her appetite decreases in direct correlation > > to the > > > > > > > number of seizures until she is having them all day and > > night and her > > > > > > > appetite has disappeared. This is the point that we end up > > in > > > > > > > hospital on IV fluids, bolus feeds and enough drugs to > > make a junkie > > > > > > > jealous ;-). This time was different. > > > > > > > > > > > > > > Her seizures were increasing (at about 20 per day) and > > her appetite > > > > > > > decreasing till it looked like another visit to the hospital > > was > > > > > > > inevitable (the next plan is to remove Oxcarbazepine and > > start > > > > > > > Keppra). I read on my Home Education Special Needs list > > that people > > > > > > > were supplementing their children's diet with flax oil and > > other > > > > > > > essential fatty acids and were getting results with > > behavioural > > > > > > > problems and learning difficulties, so after some research > > I excluded > > > > > > > Evening Primrose Oil as this seemed to cause seizures in > > prone > > > > > > > children, and decided upon flax oil due to the high > > proportion of w3 > > > > > > > fatty acids, so I began giving her 10mls per day with anti- > > oxidant > > > > > > > vitamin E 200iu (to aid the metabolism of the flax), hoping > > to see > > > > > > > improvements in behavior, learning and speech. The > > results were > > > > > > > beyond my wildest dreams. The very next day she had > > only 2 or 3 > > > > > > > seizures, the following day only 1 and after 3 days of > > starting the > > > > > > > flax oil she was seizure free! I am aware that this may > > have been a > > > > > > > co-incidence but as I have mentioned, deterioration in > > seizure > > > > > > > control has only ever been stopped by hospital admission > > and weeks of > > > > > > > drug experimentation. I consider this to be a small > > (though not so > > > > > > > small to us) miracle and I cannot believe that her fits have > > stopped > > > > > > > without the horror of being in hospital. > > > > > > > > > > > > > > So, I have begun to research the role of fatty acids in > > neurological > > > > > > > disorders and found that flax oil has been shown to > > improve seizures > > > > > > > and that a deficiency in vit E has been show to cause > > seizures, so we > > > > > > > do not know as yet whether we have this result from flax > > or from vit > > > > > > > E or both. I know how to find out, but I don't want to > > change > > > > > > > anything at the moment as we are enjoying being seizure > > free (apart > > > > > > > from the odd `flicker'). I am now on a quest for > > information, I will > > > > > > > stop at nothing to get Astrid as well as she can be and to > > get her > > > > > > > off as many drugs as possible as I am sure they > > contribute to, if not > > > > > > > cause her ataxia and development/behavior problems. I > > now have full > > > > > > > confidence in nutritional therapies and am becoming > > increasingly > > > > > > > sceptical of allopathic medicine. I have decided to consult a > > > > > > > naturopath as I want to optimise Astrid's nutritional state, > > > > > > > including counteracting any deficiencies caused by her > > medication. > > > > > > > > > > > > > > I am currently reading Udo's `fats that kill, fats that heal.', > > and > > > > > > > enjoying learning chemistry with a purpose! I would really > > value > > > > > > > input from you guys as I am unsure where to go next, > > what books have > > > > > > > you read that has helped you in your quest for health, > > recommended > > > > > > > websites, relevant studies, anything and everything, not to > > mention > > > > > > > the value of your experience. > > > > > > > > > > > > > > Our life has at times been extremely difficult and I had > > resigned > > > > > > > myself to a lifetime of drugs and hospitals. I so > > desperately want > > > > > > > Astrid to be the person she really is, inside, and would give > > > > > > > anything, do anything to make her well. I am so exited to > > at last be > > > > > > > pro-active in her care, it felt so difficult, and wrong to be > > so, > > > > > > > well, hopeless. I would stand by and believe that the > > doctors were > > > > > > > doing the very best for her as they gave her drug after > > drug, and > > > > > > > while I do not doubt their intentions, I see now that the > > holistic > > > > > > > approach stands a better chance. I really look forward to > > sharing > > > > > > > with you, thankyou for taking the time to read this. > > > > > > > > > > > > > > Love > > > > > > > > > > > > > > > > > > > > > > > > > > > > " 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@y... > > > > > > > Unsubscribe: ketogenic- > > unsubscribe@y... > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Maybe I have my facts wrong about the flax oil giving a child more seizures - I thought I read that somewhere on this list. Thanks for the info - I think this is something we might try in the near future if things dont continue to improve the way they are now. Thanks Jenn ziggyhindson wrote: Hi Jenn, I've read a lot about flax oil these last couple of weeks but nothing to suggest it may *cause* seizures, I'd be interested to learn more about this. I was aware that EPO could exaserbate seizures, so have avoided it. The suggested dose is between 1 tsp and 2 tbsps (5-20mls) and you just see what works for you. We are giving Astrid 10mls (1 tbsp) per day with 400iu vitamin E. Flax needs antioxidants like E and C to metabolise , but it all depends on which nutrients you think your child is deficient in. I also give a good liquid multi vitamin because her eating habits are erratic. It is also important to get the right balance between w3 and w6 fatty acids. I'll paste in a link, for more do a search on essential fatty acids at www.google.com. http://www.explorepub.com/articles/nutrition1.html > > > Thanks Kathy - I'll certainly check those books out. > > Unfortunately Astrid had 3 seizures today, it has just struck me > > that for the last 2 weeks (since we started the flax) she has > > not been eating very much at all due to flu and cold's, could it > > be that she had been in ketosis? She has stopped eating > > before though, for weeks - due to seizures and they have not > > stopped spontaneously, then again she wasn't on the flax. So > > much to think about - so many variables. > > > > > > > > > > > -------Original message------- > > > From "Kathy Greenwood" <malinois@m...> > > > Date 28/12/2001 20:29:34 > > > > > > > > > > > > > > > > > > What a fantastic story! We started using the flax oil but then > > heard that > > > > > > it can cause seizures in some children so we decided to cut it > > out for a bit > > > > > > to see if it made any difference. Neat to hear such a > > success story! I > > > > > > have a book called "Treating Epilepsy Naturally" by > > and > > > > > > Blaylock and they mention that a dr treated several > > children with > > > > > > vitamin E with good success. I am about to order another > > book by > > > > > > Blaylock called "Excitotoxins: The Taste That Kills". Will > > have to look up > > > > > > Udo's book also. > > > > > > > > > > > > Welcome to the list! > > > > > > > > > > > > Kathy (Mom to lin, 3 1/2 years old, idiopathic > > generalized epilepsy) > > > > > > > > > > > > Astrid > > > > > > > > > > > > > > > > > > > Hello everyone. I am so happy to find you people, I am at > > the > > > > > > > beginning of a very exiting journey with my daughter > > Astrid and I > > > > > > > hope to share developments with you and hopefully learn > > from you wise > > > > > > > people. I should start by telling you a little about us and > > where we > > > > > > > are at. > > > > > > > > > > > > > > My name is , I live in England in the UK with my > > partner Jonny > > > > > > > and daughters, Astrid 4yrs and Madeline 9 months. Astrid > > has a > > > > > > > seizure disorder (current diagnosis 'refractory complex > > partial > > > > > > > seizure disorder'), developmental delay and ataxia. She > > started > > > > > > > having seizures (complex partial with secondary > > generalisation) at 8 > > > > > > > mths old. Her seizures are completely intractable to > > medication, > > > > > > > often working initially, but what seizure control is gained is > > always > > > > > > > lost later. At her worst Astrid fits every 2 minutes > > (effectively in > > > > > > > status) and nocturnal seizures are usually more prevalent. > > The drugs > > > > > > > tried so far are (in no particular order); Carbamazepine, > > Sodium > > > > > > > Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine, > > epam, > > > > > > > Clobazam, Lorazepam, Clonazepam, Paraldehyde, > > Prednisolone, > > > > > > > Oxcarbazepine, Pheobarbital. She is currently on, per day, > > > > > > > Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine > > 225mg, Pyridoxine > > > > > > > 200mg and Clobazam being withdrawn currently at 12mg > > per day. > > > > > > > > > > > > > > I will take a moment here to explain the role of > > pyridoxine. At one > > > > > > > point in Astrid's care, during a hospital stay, pyridoxine > > was > > > > > > > started with an IV loading dose. Her seizures dramatically > > and > > > > > > > suddenly stopped. She was diagnosed with pyridoxine > > dependant > > > > > > > seizures and sent home. This lasted for a few months until > > the > > > > > > > seizures returned (as they always do) so the pyridoxine > > was > > > > > > > discontinued. This was re-started a few months ago in a > > desperate > > > > > > > attempt to regain control but with no effect. > > > > > > > > > > > > > > Astrid has had many hospital stays including ICU twice. > > She has had > > > > > > > many EEG's which have ranged from 'zero seizure activity' > > to 'severe > > > > > > > encephalitis' (which she quite obviously did not have; Two > > MRI scans > > > > > > > showing 'slight asymmetry of the frontal horns' which > > seems to have > > > > > > > no clinical significance; Blood tests for metabolic disorders > > (all > > > > > > > negative); SPECT scan showing some areas of abnormal > > function; Lumbar > > > > > > > puncture which was 'essentially normal' and the 'Woods > > Light' test - > > > > > > > nothing found. > > > > > > > > > > > > > > I mentioned earlier that each time seizure control is > > gained it > > > > > > > always lost again. The amount of seizures will always > > increase > > > > > > > gradually and her appetite decreases in direct correlation > > to the > > > > > > > number of seizures until she is having them all day and > > night and her > > > > > > > appetite has disappeared. This is the point that we end up > > in > > > > > > > hospital on IV fluids, bolus feeds and enough drugs to > > make a junkie > > > > > > > jealous ;-). This time was different. > > > > > > > > > > > > > > Her seizures were increasing (at about 20 per day) and > > her appetite > > > > > > > decreasing till it looked like another visit to the hospital > > was > > > > > > > inevitable (the next plan is to remove Oxcarbazepine and > > start > > > > > > > Keppra). I read on my Home Education Special Needs list > > that people > > > > > > > were supplementing their children's diet with flax oil and > > other > > > > > > > essential fatty acids and were getting results with > > behavioural > > > > > > > problems and learning difficulties, so after some research > > I excluded > > > > > > > Evening Primrose Oil as this seemed to cause seizures in > > prone > > > > > > > children, and decided upon flax oil due to the high > > proportion of w3 > > > > > > > fatty acids, so I began giving her 10mls per day with anti- > > oxidant > > > > > > > vitamin E 200iu (to aid the metabolism of the flax), hoping > > to see > > > > > > > improvements in behavior, learning and speech. The > > results were > > > > > > > beyond my wildest dreams. The very next day she had > > only 2 or 3 > > > > > > > seizures, the following day only 1 and after 3 days of > > starting the > > > > > > > flax oil she was seizure free! I am aware that this may > > have been a > > > > > > > co-incidence but as I have mentioned, deterioration in > > seizure > > > > > > > control has only ever been stopped by hospital admission > > and weeks of > > > > > > > drug experimentation. I consider this to be a small > > (though not so > > > > > > > small to us) miracle and I cannot believe that her fits have > > stopped > > > > > > > without the horror of being in hospital. > > > > > > > > > > > > > > So, I have begun to research the role of fatty acids in > > neurological > > > > > > > disorders and found that flax oil has been shown to > > improve seizures > > > > > > > and that a deficiency in vit E has been show to cause > > seizures, so we > > > > > > > do not know as yet whether we have this result from flax > > or from vit > > > > > > > E or both. I know how to find out, but I don't want to > > change > > > > > > > anything at the moment as we are enjoying being seizure > > free (apart > > > > > > > from the odd `flicker'). I am now on a quest for > > information, I will > > > > > > > stop at nothing to get Astrid as well as she can be and to > > get her > > > > > > > off as many drugs as possible as I am sure they > > contribute to, if not > > > > > > > cause her ataxia and development/behavior problems. I > > now have full > > > > > > > confidence in nutritional therapies and am becoming > > increasingly > > > > > > > sceptical of allopathic medicine. I have decided to consult a > > > > > > > naturopath as I want to optimise Astrid's nutritional state, > > > > > > > including counteracting any deficiencies caused by her > > medication. > > > > > > > > > > > > > > I am currently reading Udo's `fats that kill, fats that heal.', > > and > > > > > > > enjoying learning chemistry with a purpose! I would really > > value > > > > > > > input from you guys as I am unsure where to go next, > > what books have > > > > > > > you read that has helped you in your quest for health, > > recommended > > > > > > > websites, relevant studies, anything and everything, not to > > mention > > > > > > > the value of your experience. > > > > > > > > > > > > > > Our life has at times been extremely difficult and I had > > resigned > > > > > > > myself to a lifetime of drugs and hospitals. I so > > desperately want > > > > > > > Astrid to be the person she really is, inside, and would give > > > > > > > anything, do anything to make her well. I am so exited to > > at last be > > > > > > > pro-active in her care, it felt so difficult, and wrong to be > > so, > > > > > > > well, hopeless. I would stand by and believe that the > > doctors were > > > > > > > doing the very best for her as they gave her drug after > > drug, and > > > > > > > while I do not doubt their intentions, I see now that the > > holistic > > > > > > > approach stands a better chance. I really look forward to > > sharing > > > > > > > with you, thankyou for taking the time to read this. > > > > > > > > > > > > > > Love > > > > > > > > > > > > > > > > > > > > > > > > > > > > "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@y... > > > > > > > Unsubscribe: ketogenic- > > unsubscribe@y... > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 As with all things, our kids are just very individual. There have been some kids on this list for whom flax has caused increased seizures. I think the prevailing advice has been to start small (like 1g at a time) and work up slowly. It can deepen ketosis -- and there are some kids who seize more in deep ketosis.--D --- ziggyhindson wrote: > Hi Jenn, > > I've read a lot about flax oil these last couple of > weeks but > nothing to suggest it may *cause* seizures, I'd be > interested to > learn more about this. I was aware that EPO could > exaserbate > seizures, so have avoided it. The suggested dose is > between 1 tsp > and 2 tbsps (5-20mls) and you just see what works > for you. We are > giving Astrid 10mls (1 tbsp) per day with 400iu > vitamin E. Flax > needs antioxidants like E and C to metabolise , but > it all depends > on which nutrients you think your child is deficient > in. I also give > a good liquid multi vitamin because her eating > habits are erratic. > It is also important to get the right balance > between w3 and w6 > fatty acids. I'll paste in a link, for more do a > search on essential > fatty acids at www.google.com. > > http://www.explorepub.com/articles/nutrition1.html > > > > > > > > > > Thanks Kathy - I'll certainly check those books > out. > > > Unfortunately Astrid had 3 seizures today, it > has just struck me > > > that for the last 2 weeks (since we started the > flax) she has > > > not been eating very much at all due to flu and > cold's, could it > > > be that she had been in ketosis? She has stopped > eating > > > before though, for weeks - due to seizures and > they have not > > > stopped spontaneously, then again she wasn't on > the flax. So > > > much to think about - so many variables. > > > > > > > > > > > > > > > > -------Original message------- > > > > From " Kathy Greenwood " <malinois@m...> > > > > Date 28/12/2001 20:29:34 > > > > > > > > > > > > > > > > > > > > > > > > What a fantastic story! We started using the > flax oil but then > > > heard that > > > > > > > > it can cause seizures in some children so we > decided to cut it > > > out for a bit > > > > > > > > to see if it made any difference. Neat to hear > such a > > > success story! I > > > > > > > > have a book called " Treating Epilepsy > Naturally " by > > > and > > > > > > > > Blaylock and they mention that a dr > treated several > > > children with > > > > > > > > vitamin E with good success. I am about to > order another > > > book by > > > > > > > > Blaylock called " Excitotoxins: The Taste That > Kills " . Will > > > have to look up > > > > > > > > Udo's book also. > > > > > > > > > > > > > > > > Welcome to the list! > > > > > > > > > > > > > > > > Kathy (Mom to lin, 3 1/2 years old, > idiopathic > > > generalized epilepsy) > > > > > > > > > > > > > > > > Astrid > > > > > > > > > > > > > > > > > > > > > > > > > Hello everyone. I am so happy to find you > people, I am at > > > the > > > > > > > > > beginning of a very exiting journey with my > daughter > > > Astrid and I > > > > > > > > > hope to share developments with you and > hopefully learn > > > from you wise > > > > > > > > > people. I should start by telling you a > little about us and > > > where we > > > > > > > > > are at. > > > > > > > > > > > > > > > > > > My name is , I live in England in the UK > with my > > > partner Jonny > > > > > > > > > and daughters, Astrid 4yrs and Madeline 9 > months. Astrid > > > has a > > > > > > > > > seizure disorder (current diagnosis > 'refractory complex > > > partial > > > > > > > > > seizure disorder'), developmental delay and > ataxia. She > > > started > > > > > > > > > having seizures (complex partial with > secondary > > > generalisation) at 8 > > > > > > > > > mths old. Her seizures are completely > intractable to > > > medication, > > > > > > > > > often working initially, but what seizure > control is gained > is > > > always > > > > > > > > > lost later. At her worst Astrid fits every 2 > minutes > > > (effectively in > > > > > > > > > status) and nocturnal seizures are usually > more prevalent. > > > The drugs > > > > > > > > > tried so far are (in no particular order); > Carbamazepine, > > > Sodium > > > > > > > > > Valporate, Phenytoin, Lamotrigine, > Topirimate, Pyridoxine, > > > epam, > > > > > > > > > Clobazam, Lorazepam, Clonazepam, > Paraldehyde, > > > Prednisolone, > > > > > > > > > Oxcarbazepine, Pheobarbital. She is > currently on, per day, > > > > > > > > > Oxcarbazepine 600mg, Phenytoin 100mg, > Lamotrigine > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Flax made my daughters seizures worse Jill At 04:46 AM 12/31/01, you wrote: >Maybe I have my facts wrong about the flax oil giving a child more >seizures - I thought I read that somewhere on this list. Thanks for the >info - I think this is something we might try in the near future if things >dont continue to improve the way they are now. > >Thanks > >Jenn > >ziggyhindson wrote: >> Hi Jenn, >> >>I've read a lot about flax oil these last couple of weeks but >>nothing to suggest it may *cause* seizures, I'd be interested to >>learn more about this. I was aware that EPO could exaserbate >>seizures, so have avoided it. The suggested dose is between 1 tsp >>and 2 tbsps (5-20mls) and you just see what works for you. We are >>giving Astrid 10mls (1 tbsp) per day with 400iu vitamin E. Flax >>needs antioxidants like E and C to metabolise , but it all depends >>on which nutrients you think your child is deficient in. I also give >>a good liquid multi vitamin because her eating habits are erratic. >>It is also important to get the right balance between w3 and w6 >>fatty acids. I'll paste in a link, for more do a search on essential >>fatty acids at www.google.com. >> >><http://www.explorepub.com/articles/nutrition1.html>http://www.explorepub.com/\ articles/nutrition1.html >> >> >> >> >> >> >> > >> > > Thanks Kathy - I'll certainly check those books out. >> > > Unfortunately Astrid had 3 seizures today, it has just struck me >> > > that for the last 2 weeks (since we started the flax) she has >> > > not been eating very much at all due to flu and cold's, could it >> > > be that she had been in ketosis? She has stopped eating >> > > before though, for weeks - due to seizures and they have not >> > > stopped spontaneously, then again she wasn't on the flax. So >> > > much to think about - so many variables. >> > > >> > > >> > > >> > > >> > > > -------Original message------- >> > > > From " Kathy Greenwood " <malinois@m...> >> > > > Date 28/12/2001 20:29:34 >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > What a fantastic story! We started using the flax oil but then >> > > heard that >> > > > >> > > > it can cause seizures in some children so we decided to cut it >> > > out for a bit >> > > > >> > > > to see if it made any difference. Neat to hear such a >> > > success story! I >> > > > >> > > > have a book called " Treating Epilepsy Naturally " by >> > > and >> > > > >> > > > Blaylock and they mention that a dr treated several >> > > children with >> > > > >> > > > vitamin E with good success. I am about to order another >> > > book by >> > > > >> > > > Blaylock called " Excitotoxins: The Taste That Kills " . Will >> > > have to look up >> > > > >> > > > Udo's book also. >> > > > >> > > > >> > > > >> > > > Welcome to the list! >> > > > >> > > > >> > > > >> > > > Kathy (Mom to lin, 3 1/2 years old, idiopathic >> > > generalized epilepsy) >> > > > >> > > > >> > > > >> > > > Astrid >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > Hello everyone. I am so happy to find you people, I am at >> > > the >> > > > >> > > > > beginning of a very exiting journey with my daughter >> > > Astrid and I >> > > > >> > > > > hope to share developments with you and hopefully learn >> > > from you wise >> > > > >> > > > > people. I should start by telling you a little about us and >> > > where we >> > > > >> > > > > are at. >> > > > >> > > > > >> > > > >> > > > > My name is , I live in England in the UK with my >> > > partner Jonny >> > > > >> > > > > and daughters, Astrid 4yrs and Madeline 9 months. Astrid >> > > has a >> > > > >> > > > > seizure disorder (current diagnosis 'refractory complex >> > > partial >> > > > >> > > > > seizure disorder'), developmental delay and ataxia. She >> > > started >> > > > >> > > > > having seizures (complex partial with secondary >> > > generalisation) at 8 >> > > > >> > > > > mths old. Her seizures are completely intractable to >> > > medication, >> > > > >> > > > > often working initially, but what seizure control is gained >>is >> > > always >> > > > >> > > > > lost later. At her worst Astrid fits every 2 minutes >> > > (effectively in >> > > > >> > > > > status) and nocturnal seizures are usually more prevalent. >> > > The drugs >> > > > >> > > > > tried so far are (in no particular order); Carbamazepine, >> > > Sodium >> > > > >> > > > > Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine, >> > > epam, >> > > > >> > > > > Clobazam, Lorazepam, Clonazepam, Paraldehyde, >> > > Prednisolone, >> > > > >> > > > > Oxcarbazepine, Pheobarbital. She is currently on, per day, >> > > > >> > > > > Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine >> > > 225mg, Pyridoxine >> > > > >> > > > > 200mg and Clobazam being withdrawn currently at 12mg >> > > per day. >> > > > >> > > > > >> > > > >> > > > > I will take a moment here to explain the role of >> > > pyridoxine. At one >> > > > >> > > > > point in Astrid's care, during a hospital stay, pyridoxine >> > > was >> > > > >> > > > > started with an IV loading dose. Her seizures dramatically >> > > and >> > > > >> > > > > suddenly stopped. She was diagnosed with pyridoxine >> > > dependant >> > > > >> > > > > seizures and sent home. This lasted for a few months until >> > > the >> > > > >> > > > > seizures returned (as they always do) so the pyridoxine >> > > was >> > > > >> > > > > discontinued. This was re-started a few months ago in a >> > > desperate >> > > > >> > > > > attempt to regain control but with no effect. >> > > > >> > > > > >> > > > >> > > > > Astrid has had many hospital stays including ICU twice. >> > > She has had >> > > > >> > > > > many EEG's which have ranged from 'zero seizure activity' >> > > to 'severe >> > > > >> > > > > encephalitis' (which she quite obviously did not have; Two >> > > MRI scans >> > > > >> > > > > showing 'slight asymmetry of the frontal horns' which >> > > seems to have >> > > > >> > > > > no clinical significance; Blood tests for metabolic disorders >> > > (all >> > > > >> > > > > negative); SPECT scan showing some areas of abnormal >> > > function; Lumbar >> > > > >> > > > > puncture which was 'essentially normal' and the 'Woods >> > > Light' test - >> > > > >> > > > > nothing found. >> > > > >> > > > > >> > > > >> > > > > I mentioned earlier that each time seizure control is >> > > gained it >> > > > >> > > > > always lost again. The amount of seizures will always >> > > increase >> > > > >> > > > > gradually and her appetite decreases in direct correlation >> > > to the >> > > > >> > > > > number of seizures until she is having them all day and >> > > night and her >> > > > >> > > > > appetite has disappeared. This is the point that we end up >> > > in >> > > > >> > > > > hospital on IV fluids, bolus feeds and enough drugs to >> > > make a junkie >> > > > >> > > > > jealous ;-). This time was different. >> > > > >> > > > > >> > > > >> > > > > Her seizures were increasing (at about 20 per day) and >> > > her appetite >> > > > >> > > > > decreasing till it looked like another visit to the hospital >> > > was >> > > > >> > > > > inevitable (the next plan is to remove Oxcarbazepine and >> > > start >> > > > >> > > > > Keppra). I read on my Home Education Special Needs list >> > > that people >> > > > >> > > > > were supplementing their children's diet with flax oil and >> > > other >> > > > >> > > > > essential fatty acids and were getting results with >> > > behavioural >> > > > >> > > > > problems and learning difficulties, so after some research >> > > I excluded >> > > > >> > > > > Evening Primrose Oil as this seemed to cause seizures in >> > > prone >> > > > >> > > > > children, and decided upon flax oil due to the high >> > > proportion of w3 >> > > > >> > > > > fatty acids, so I began giving her 10mls per day with anti- >> > > oxidant >> > > > >> > > > > vitamin E 200iu (to aid the metabolism of the flax), hoping >> > > to see >> > > > >> > > > > improvements in behavior, learning and speech. The >> > > results were >> > > > >> > > > > beyond my wildest dreams. The very next day she had >> > > only 2 or 3 >> > > > >> > > > > seizures, the following day only 1 and after 3 days of >> > > starting the >> > > > >> > > > > flax oil she was seizure free! I am aware that this may >> > > have been a >> > > > >> > > > > co-incidence but as I have mentioned, deterioration in >> > > seizure >> > > > >> > > > > control has only ever been stopped by hospital admission >> > > and weeks of >> > > > >> > > > > drug experimentation. I consider this to be a small >> > > (though not so >> > > > >> > > > > small to us) miracle and I cannot believe that her fits have >> > > stopped >> > > > >> > > > > without the horror of being in hospital. >> > > > >> > > > > >> > > > >> > > > > So, I have begun to research the role of fatty acids in >> > > neurological >> > > > >> > > > > disorders and found that flax oil has been shown to >> > > improve seizures >> > > > >> > > > > and that a deficiency in vit E has been show to cause >> > > seizures, so we >> > > > >> > > > > do not know as yet whether we have this result from flax >> > > or from vit >> > > > >> > > > > E or both. I know how to find out, but I don't want to >> > > change >> > > > >> > > > > anything at the moment as we are enjoying being seizure >> > > free (apart >> > > > >> > > > > from the odd `flicker'). I am now on a quest for >> > > information, I will >> > > > >> > > > > stop at nothing to get Astrid as well as she can be and to >> > > get her >> > > > >> > > > > off as many drugs as possible as I am sure they >> > > contribute to, if not >> > > > >> > > > > cause her ataxia and development/behavior problems. I >> > > now have full >> > > > >> > > > > confidence in nutritional therapies and am becoming >> > > increasingly >> > > > >> > > > > sceptical of allopathic medicine. I have decided to consult a >> > > > >> > > > > naturopath as I want to optimise Astrid's nutritional state, >> > > > >> > > > > including counteracting any deficiencies caused by her >> > > medication. >> > > > >> > > > > >> > > > >> > > > > I am currently reading Udo's `fats that kill, fats that >>heal.', >> > > and >> > > > >> > > > > enjoying learning chemistry with a purpose! I would really >> > > value >> > > > >> > > > > input from you guys as I am unsure where to go next, >> > > what books have >> > > > >> > > > > you read that has helped you in your quest for health, >> > > recommended >> > > > >> > > > > websites, relevant studies, anything and everything, not to >> > > mention >> > > > >> > > > > the value of your experience. >> > > > >> > > > > >> > > > >> > > > > Our life has at times been extremely difficult and I had >> > > resigned >> > > > >> > > > > myself to a lifetime of drugs and hospitals. I so >> > > desperately want >> > > > >> > > > > Astrid to be the person she really is, inside, and would give >> > > > >> > > > > anything, do anything to make her well. I am so exited to >> > > at last be >> > > > >> > > > > pro-active in her care, it felt so difficult, and wrong to be >> > > so, >> > > > >> > > > > well, hopeless. I would stand by and believe that the >> > > doctors were >> > > > >> > > > > doing the very best for her as they gave her drug after >> > > drug, and >> > > > >> > > > > while I do not doubt their intentions, I see now that the >> > > holistic >> > > > >> > > > > approach stands a better chance. I really look forward to >> > > sharing >> > > > >> > > > > with you, thankyou for taking the time to read this. >> > > > >> > > > > >> > > > >> > > > > Love >> > > > >> > > > > >> > > > >> > > > > >> > > > >> > > > > >> > > > >> > > > > " 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@y... >> > > > >> > > > > Unsubscribe: ketogenic- >> > > unsubscribe@y... >> > > > >> > > > > >> > > > >> > > > > >> > > > >> > > > > >> > > > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Thanks - think I will be trying this in the future. We are working on a dilantin wean right now and I dont want to do too many new things at once. Jenn DeEtte Person wrote: As with all things, our kids are just very individual. There have been some kids on this list for whom flax has caused increased seizures. I think the prevailing advice has been to start small (like 1g at a time) and work up slowly. It can deepen ketosis -- and there are some kids who seize more in deep ketosis.--D --- ziggyhindson wrote: > Hi Jenn, > > I've read a lot about flax oil these last couple of > weeks but > nothing to suggest it may *cause* seizures, I'd be > interested to > learn more about this. I was aware that EPO could > exaserbate > seizures, so have avoided it. The suggested dose is > between 1 tsp > and 2 tbsps (5-20mls) and you just see what works > for you. We are > giving Astrid 10mls (1 tbsp) per day with 400iu > vitamin E. Flax > needs antioxidants like E and C to metabolise , but > it all depends > on which nutrients you think your child is deficient > in. I also give > a good liquid multi vitamin because her eating > habits are erratic. > It is also important to get the right balance > between w3 and w6 > fatty acids. I'll paste in a link, for more do a > search on essential > fatty acids at www.google.com. > > http://www.explorepub.com/articles/nutrition1.html > > > > > > > > > > Thanks Kathy - I'll certainly check those books > out. > > > Unfortunately Astrid had 3 seizures today, it > has just struck me > > > that for the last 2 weeks (since we started the > flax) she has > > > not been eating very much at all due to flu and > cold's, could it > > > be that she had been in ketosis? She has stopped > eating > > > before though, for weeks - due to seizures and > they have not > > > stopped spontaneously, then again she wasn't on > the flax. So > > > much to think about - so many variables. > > > > > > > > > > > > > > > > -------Original message------- > > > > From "Kathy Greenwood" <malinois@m...> > > > > Date 28/12/2001 20:29:34 > > > > > > > > > > > > > > > > > > > > > > > > What a fantastic story! We started using the > flax oil but then > > > heard that > > > > > > > > it can cause seizures in some children so we > decided to cut it > > > out for a bit > > > > > > > > to see if it made any difference. Neat to hear > such a > > > success story! I > > > > > > > > have a book called "Treating Epilepsy > Naturally" by > > > and > > > > > > > > Blaylock and they mention that a dr > treated several > > > children with > > > > > > > > vitamin E with good success. I am about to > order another > > > book by > > > > > > > > Blaylock called "Excitotoxins: The Taste That > Kills". Will > > > have to look up > > > > > > > > Udo's book also. > > > > > > > > > > > > > > > > Welcome to the list! > > > > > > > > > > > > > > > > Kathy (Mom to lin, 3 1/2 years old, > idiopathic > > > generalized epilepsy) > > > > > > > > > > > > > > > > Astrid > > > > > > > > > > > > > > > > > > > > > > > > > Hello everyone. I am so happy to find you > people, I am at > > > the > > > > > > > > > beginning of a very exiting journey with my > daughter > > > Astrid and I > > > > > > > > > hope to share developments with you and > hopefully learn > > > from you wise > > > > > > > > > people. I should start by telling you a > little about us and > > > where we > > > > > > > > > are at. > > > > > > > > > > > > > > > > > > My name is , I live in England in the UK > with my > > > partner Jonny > > > > > > > > > and daughters, Astrid 4yrs and Madeline 9 > months. Astrid > > > has a > > > > > > > > > seizure disorder (current diagnosis > 'refractory complex > > > partial > > > > > > > > > seizure disorder'), developmental delay and > ataxia. She > > > started > > > > > > > > > having seizures (complex partial with > secondary > > > generalisation) at 8 > > > > > > > > > mths old. Her seizures are completely > intractable to > > > medication, > > > > > > > > > often working initially, but what seizure > control is gained > is > > > always > > > > > > > > > lost later. At her worst Astrid fits every 2 > minutes > > > (effectively in > > > > > > > > > status) and nocturnal seizures are usually > more prevalent. > > > The drugs > > > > > > > > > tried so far are (in no particular order); > Carbamazepine, > > > Sodium > > > > > > > > > Valporate, Phenytoin, Lamotrigine, > Topirimate, Pyridoxine, > > > epam, > > > > > > > > > Clobazam, Lorazepam, Clonazepam, > Paraldehyde, > > > Prednisolone, > > > > > > > > > Oxcarbazepine, Pheobarbital. She is > currently on, per day, > > > > > > > > > Oxcarbazepine 600mg, Phenytoin 100mg, > Lamotrigine > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 On Sun, 30 Dec 2001 20:08:16 -0000 "ziggyhindson" writes: Hi Jenn,I've read a lot about flax oil these last couple of weeks but nothing to suggest it may *cause* seizures, I'd be interested to learn more about this. I was aware that EPO could exaserbate seizures, so have avoided it. I have heard this referenced to time and time again..and with everyting else...your mileage may vary. I think the EPO comes in play with the fact that most of us are deficient in w3 fatty acids (flax) and Evening Primrose Oil contains the GLA found in w6 oils. I think supplementing with w6 in an already out of balance system (to much w6 and not enough w3) could create an even worse situation. Lack of w3 could defiantly contribute to increased seizuers! I use to have the study that is always referred to...they supplemented schizophrenics with EPO and they had increased sieuzres. What they dont tell you is what else they were eating. again I believe this is do to a deficiency in w3 fats. The suggested dose is between 1 tsp and 2 tbsps (5-20mls) and you just see what works for you. I believe that the usual amount is one Tbl for every 100 lbs. or 1 tsp for every 35 or something like that, but this is for regular people on a regular diet. I think our kids fall into a different category all together. takes 60-70gms a day (he is adult size at 170lbs.) High amounts of flaxseed oil will increase the metabolism (which Bry needs) and actually help you loose weight!!!!!! (also had this study at one time) Somthing else to consider...in an indepth conversation with several biochemists I found that flaxseed oil is an absolutely perfect addition to this diet with it being highly absorbable and digestible...a great fuel!! and again...YMMV...your mileage may vary. I think some kids with a processing or elimination problem might end up with a buildup of VLCFA (very long chain fatty acids) which would increase seizures...I think all the nutrients necessary for processing should be addressed FIRST!! and yes the very important antioxidants!! takes 2000mgs of C, 800mgs of E (make sure its natural E not synthetic) and also essential Selenium and CoQ BArb....s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Also, just to through more confusion in here, I had been on the SpeechDiet list for awhile and was very excited about their discussions on a ProEFA supplement. I tried it with and really did see a nice " perk up " and increase in vocabulary, etc. -- but a couple days later we started to have lots of seizures creep back in. I traced it back to the Borage Oil in the ProEFA. Borage is in the same class as Evening Primrose. I think Barb's right with her comments below, but I'm still finding that can't tolerate the good stuff. Only tried flax once (and my dietician stupidly calculated in 16g), but we saw problems. I've been trying things out very slowly just to see. I really wish I could have seen some answers from the ProEFA or any of these other good oils -- just not happening here. Just a funny aside --I posted about this on the Speech Diet list and kind of got shut down -- they wouldn't even send out my post for fear of " scaring other Moms " ! The thing is that for many, probably most, kids, it's fine. . . but our kids are all so individual that it's really trial and error (unfortunately, the error here is seizures).--D --- martinccf@... wrote: > > > On Sun, 30 Dec 2001 20:08:16 -0000 " ziggyhindson " > writes: > > Hi Jenn, > > I've read a lot about flax oil these last couple of > weeks but > nothing to suggest it may *cause* seizures, I'd be > interested to > learn more about this. I was aware that EPO could > exaserbate > seizures, so have avoided it. > > I have heard this referenced to time and time > again..and with > everyting else...your mileage may vary. I think > the EPO comes in play > with > the fact that most of us are deficient in w3 fatty > acids (flax) and > Evening > Primrose Oil contains the GLA found in w6 oils. I > think supplementing > with w6 in an already out of balance system (to much > w6 and not enough > w3) could create an even worse situation. Lack of > w3 could defiantly > contribute to increased seizuers! > > I use to have the study that is always referred > to...they supplemented > schizophrenics with EPO and they had increased > sieuzres. What they > dont tell you is what else they were eating. again > I believe this is do > to a > deficiency in w3 fats. > > The suggested dose is between 1 tsp > and 2 tbsps (5-20mls) and you just see what works > for you. > > I believe that the usual amount is one Tbl for every > 100 lbs. or 1 tsp > for every 35 > or something like that, but this is for regular > people on a regular diet. > I think > our kids fall into a different category all > together. takes > 60-70gms a day (he is adult > size at 170lbs.) High amounts of flaxseed oil will > increase the > metabolism (which > Bry needs) and actually help you loose weight!!!!!! > (also had this study > at one > time) > > Somthing else to consider...in an indepth > conversation with several > biochemists I found > that flaxseed oil is an absolutely perfect addition > to this diet with it > being highly absorbable > and digestible...a great fuel!! > > and again...YMMV...your mileage may vary. I think > some kids with a > processing or > elimination problem might end up with a buildup of > VLCFA (very long chain > fatty > acids) which would increase seizures...I think all > the nutrients > necessary for > processing should be addressed FIRST!! and yes the > very important > antioxidants!! > > takes 2000mgs of C, 800mgs of E (make sure its > natural E not > synthetic) > and also essential Selenium and CoQ > > BArb....s mom __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Hi , I'm so glad things are working out well for Astrid. I can relate to most of what you say. Where are you in the UK? We live in Bucks, UK. My son Rohan is 13 yrs old and has had the same experiences you describe with the meds. I'm also interested in finding a naturopath but so far have not been able to find one. I too bought Udo's book and find it v.interesting. Rohan however does not tolerate flax well (one of the few) as he gets v.yawny/ tired etc. on it. The past Summer we started digestive enzymes and he could then take some flax, but we also started vit E soon after and he had a few good weeks. So I think we have to experiment more with them. I'm glad to find someone from the UK on the list, so we can share info on products and other things here. Love Saro Astrid > Hello everyone. I am so happy to find you people, I am at the > beginning of a very exiting journey with my daughter Astrid and I > hope to share developments with you and hopefully learn from you wise > people. I should start by telling you a little about us and where we > are at. > > My name is , I live in England in the UK with my partner Jonny > and daughters, Astrid 4yrs and Madeline 9 months. Astrid has a > seizure disorder (current diagnosis 'refractory complex partial > seizure disorder'), developmental delay and ataxia. She started > having seizures (complex partial with secondary generalisation) at 8 > mths old. Her seizures are completely intractable to medication, > often working initially, but what seizure control is gained is always > lost later. At her worst Astrid fits every 2 minutes (effectively in > status) and nocturnal seizures are usually more prevalent. The drugs > tried so far are (in no particular order); Carbamazepine, Sodium > Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine, epam, > Clobazam, Lorazepam, Clonazepam, Paraldehyde, Prednisolone, > Oxcarbazepine, Pheobarbital. She is currently on, per day, > Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine 225mg, Pyridoxine > 200mg and Clobazam being withdrawn currently at 12mg per day. > > I will take a moment here to explain the role of pyridoxine. At one > point in Astrid's care, during a hospital stay, pyridoxine was > started with an IV loading dose. Her seizures dramatically and > suddenly stopped. She was diagnosed with pyridoxine dependant > seizures and sent home. This lasted for a few months until the > seizures returned (as they always do) so the pyridoxine was > discontinued. This was re-started a few months ago in a desperate > attempt to regain control but with no effect. > > Astrid has had many hospital stays including ICU twice. She has had > many EEG's which have ranged from 'zero seizure activity' to 'severe > encephalitis' (which she quite obviously did not have; Two MRI scans > showing 'slight asymmetry of the frontal horns' which seems to have > no clinical significance; Blood tests for metabolic disorders (all > negative); SPECT scan showing some areas of abnormal function; Lumbar > puncture which was 'essentially normal' and the 'Woods Light' test - > nothing found. > > I mentioned earlier that each time seizure control is gained it > always lost again. The amount of seizures will always increase > gradually and her appetite decreases in direct correlation to the > number of seizures until she is having them all day and night and her > appetite has disappeared. This is the point that we end up in > hospital on IV fluids, bolus feeds and enough drugs to make a junkie > jealous ;-). This time was different. > > Her seizures were increasing (at about 20 per day) and her appetite > decreasing till it looked like another visit to the hospital was > inevitable (the next plan is to remove Oxcarbazepine and start > Keppra). I read on my Home Education Special Needs list that people > were supplementing their children's diet with flax oil and other > essential fatty acids and were getting results with behavioural > problems and learning difficulties, so after some research I excluded > Evening Primrose Oil as this seemed to cause seizures in prone > children, and decided upon flax oil due to the high proportion of w3 > fatty acids, so I began giving her 10mls per day with anti-oxidant > vitamin E 200iu (to aid the metabolism of the flax), hoping to see > improvements in behavior, learning and speech. The results were > beyond my wildest dreams. The very next day she had only 2 or 3 > seizures, the following day only 1 and after 3 days of starting the > flax oil she was seizure free! I am aware that this may have been a > co-incidence but as I have mentioned, deterioration in seizure > control has only ever been stopped by hospital admission and weeks of > drug experimentation. I consider this to be a small (though not so > small to us) miracle and I cannot believe that her fits have stopped > without the horror of being in hospital. > > So, I have begun to research the role of fatty acids in neurological > disorders and found that flax oil has been shown to improve seizures > and that a deficiency in vit E has been show to cause seizures, so we > do not know as yet whether we have this result from flax or from vit > E or both. I know how to find out, but I don't want to change > anything at the moment as we are enjoying being seizure free (apart > from the odd `flicker'). I am now on a quest for information, I will > stop at nothing to get Astrid as well as she can be and to get her > off as many drugs as possible as I am sure they contribute to, if not > cause her ataxia and development/behavior problems. I now have full > confidence in nutritional therapies and am becoming increasingly > sceptical of allopathic medicine. I have decided to consult a > naturopath as I want to optimise Astrid's nutritional state, > including counteracting any deficiencies caused by her medication. > > I am currently reading Udo's `fats that kill, fats that heal.', and > enjoying learning chemistry with a purpose! I would really value > input from you guys as I am unsure where to go next, what books have > you read that has helped you in your quest for health, recommended > websites, relevant studies, anything and everything, not to mention > the value of your experience. > > Our life has at times been extremely difficult and I had resigned > myself to a lifetime of drugs and hospitals. I so desperately want > Astrid to be the person she really is, inside, and would give > anything, do anything to make her well. I am so exited to at last be > pro-active in her care, it felt so difficult, and wrong to be so, > well, hopeless. I would stand by and believe that the doctors were > doing the very best for her as they gave her drug after drug, and > while I do not doubt their intentions, I see now that the holistic > approach stands a better chance. I really look forward to sharing > with you, thankyou for taking the time to read this. > > Love > > > > "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 January 3, 2002 Report Share Posted January 3, 2002 Hi DeEtte - I am considering the KGD. Astrid seems to be doing quite well at the moment on the flax and E though (no more seizures after that cluster), so 'if it ain't broke don't fix it' as they say. It is definately the next step if she begins to regress again. Thanks for the welcome. > Wow, what a story. . .and good for you for standing up > for your daughter and researching on your own to do > what's best for her. Welcome to our group -- there's > much to learn here. You didn't say -- are you also > considering the keto diet? Sounds like you're doing > well now, but that's always another " empowering " option!--D > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Hi Jen- Thanks so much. That is so great that Marissa is off her meds on the kgd, I can imagine how happy that must make you all! I am currently working on getting Astrid on as healthy a diet as possible- cutting out sugar and processed foods and supplementing with a multivit so if we lose control again it shouldn't be too much of a transition for her to the kgd. Thanks for the welcome! > , > Oh! I'm so sorry to hear about the seizures today. I understand the hope > that goes with trying something new, especially when it turns out to be so > effective in the begining. > I loved your intro post. What a great mom you are! I also have a four year > old daughter. She has a dx of cerebral palsy, which was landed on after many > other dx, which were excluded for one reason or another. Your stories of > trying so many things and spending so much time in the hospital sound so > similar to our family. It certainly is not easy! > There have been quite a few keto kids that do well with flax oil while on the > diet. I would not be surprised, though, if you are right about ketosis. > Maybe you were able to generate some ketones with the oil and less food > intake. > Wonderful to have you here > Love > Jen- mommy to Marissa (4 years old, cerebral palsy, intractible seizures, > keto kid since November 1999, med free since June 2000), (2 years old > and very spirited!), and Jade (4.5 months and adorable) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Patti- that is so fantastic! Can you believe that after 3+ years of intractable seizures our neuro has never even suggested the kgd? Tegretol (thats carbamazepine right?) always worked for Astrid (initially) but the side effects were getting too much to bare - her ataxia got so bad she couldn't even stand up, it was substituted for oxcarbazepine. 2:3:1 thats carb:fat:protien? > , > > Yes..... it's been very successful.. although Katera never had a terrific number of seizures. She started having them at 17 days of age..... very generalized ones. I don't know what they would have called them at that point but she always stopped breathing and turned blue...... lasted for 3 to 4 minutes usually. She would have clusters of seizures.... up to several in a day. As she got older, they became more like a tonic-clonic type, with the motor involvement. Her seizures worsened on meds, especially on Tegretol, and we had actually taken her off all meds about 10 months prior to starting the diet, and still, she went several months without any. Then, in August of 2000, she went back to having at least one, sometimes several, tonic-clonic seizures (again 3 to 4 minutes long) a day..... so we knew we had to do something. The neuro offered us two options to try..... Lamictal or the Keto diet. Having had such bad experiences with meds, we opted to go for the diet. The daily seizures stopped after the first day of the diet (October 10th, 2000)..... since then, in fourteen months, we have seen only five seizures.....and these have only been at the beginning of running a fever. She will have just one, and usually mild and short. We have had as long as six and a half months totally seizure free ....until about 5 weeks ago when she had one febrile seizure. Christmas Day, she ran about 103 or higher fever but we saw no seizures at all. So, I'd say this is a pretty good level of control...... anyway, I'll take it. Katera is on a 2.3:1 ratio at the moment and doing well. > > Patti > Re[1]: Astrid > > > Hi Patti- I am homeschooling all of my children (2 so far!). It is > always great to meet fellow homeschoolers. To answer your > question I started the flax oil and vit E roughly 2 weeks ago, > though we have lost seizure control again, I am still > opptimistic, there are lots of avenues to explore, including the > full blown KGD. Has Katera had success with the KGD? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Patti- that is so fantastic! Can you believe that after 3+ years of intractable seizures our neuro has never even suggested the kgd? Tegretol (thats carbamazepine right?) always worked for Astrid (initially) but the side effects were getting too much to bare - her ataxia got so bad she couldn't even stand up, it was substituted for oxcarbazepine. 2:3:1 thats carb:fat:protien? > , > > Yes..... it's been very successful.. although Katera never had a terrific number of seizures. She started having them at 17 days of age..... very generalized ones. I don't know what they would have called them at that point but she always stopped breathing and turned blue...... lasted for 3 to 4 minutes usually. She would have clusters of seizures.... up to several in a day. As she got older, they became more like a tonic-clonic type, with the motor involvement. Her seizures worsened on meds, especially on Tegretol, and we had actually taken her off all meds about 10 months prior to starting the diet, and still, she went several months without any. Then, in August of 2000, she went back to having at least one, sometimes several, tonic-clonic seizures (again 3 to 4 minutes long) a day..... so we knew we had to do something. The neuro offered us two options to try..... Lamictal or the Keto diet. Having had such bad experiences with meds, we opted to go for the diet. The daily seizures stopped after the first day of the diet (October 10th, 2000)..... since then, in fourteen months, we have seen only five seizures.....and these have only been at the beginning of running a fever. She will have just one, and usually mild and short. We have had as long as six and a half months totally seizure free ....until about 5 weeks ago when she had one febrile seizure. Christmas Day, she ran about 103 or higher fever but we saw no seizures at all. So, I'd say this is a pretty good level of control...... anyway, I'll take it. Katera is on a 2.3:1 ratio at the moment and doing well. > > Patti > Re[1]: Astrid > > > Hi Patti- I am homeschooling all of my children (2 so far!). It is > always great to meet fellow homeschoolers. To answer your > question I started the flax oil and vit E roughly 2 weeks ago, > though we have lost seizure control again, I am still > opptimistic, there are lots of avenues to explore, including the > full blown KGD. Has Katera had success with the KGD? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Hi saro- We're in north east England. I have located a couple of naturopaths (via yellow pages) so I'm going to 'interview' them! It seems that udo's book is misleading in that it is not written for children, who actually *need* saturated fat for growth. A better book that has been recommended to me is Dr. Enig's " Know Your Fats " or Smart Fats: How dietary fats and oils affect mental, physical and emotional intelligence by Dr Schmidt. They are next on my list. Please do keep in touch. Write me privately if you like. Best wishes, . > Hi , > I'm so glad things are working out well for Astrid. > I can relate to most of what you say. Where are > you in the UK? We live in Bucks, UK. My son > Rohan is 13 yrs old and has had the same experiences > you describe with the meds. I'm also interested in > finding a naturopath but so far have not been able > to find one. I too bought Udo's book and find it > v.interesting. Rohan however does not tolerate flax > well (one of the few) as he gets v.yawny/ tired etc. > on it. The past Summer we started digestive enzymes > and he could then take some flax, but we also started > vit E soon after and he had a few good weeks. > So I think we have to experiment more with them. > I'm glad to find someone from the UK on the list, > so we can share info on products and other things here. > Love > Saro > > > > > Astrid > > > > > > > Hello everyone. I am so happy to find you people, I am at the > > > beginning of a very exiting journey with my daughter Astrid and I > > > hope to share developments with you and hopefully learn from you > > wise > > > people. I should start by telling you a little about us and where we > > > > > are at. > > > > > > My name is , I live in England in the UK with my partner Jonny > > > and daughters, Astrid 4yrs and Madeline 9 months. Astrid has a > > > seizure disorder (current diagnosis 'refractory complex partial > > > seizure disorder'), developmental delay and ataxia. She started > > > having seizures (complex partial with secondary generalisation) at 8 > > > > > mths old. Her seizures are completely intractable to medication, > > > often working initially, but what seizure control is gained is > > always > > > lost later. At her worst Astrid fits every 2 minutes (effectively in > > > > > status) and nocturnal seizures are usually more prevalent. The drugs > > > > > tried so far are (in no particular order); Carbamazepine, Sodium > > > Valporate, Phenytoin, Lamotrigine, Topirimate, Pyridoxine, epam, > > > > > Clobazam, Lorazepam, Clonazepam, Paraldehyde, Prednisolone, > > > Oxcarbazepine, Pheobarbital. She is currently on, per day, > > > Oxcarbazepine 600mg, Phenytoin 100mg, Lamotrigine 225mg, Pyridoxine > > > 200mg and Clobazam being withdrawn currently at 12mg per day. > > > > > > I will take a moment here to explain the role of pyridoxine. At one > > > point in Astrid's care, during a hospital stay, pyridoxine was > > > started with an IV loading dose. Her seizures dramatically and > > > suddenly stopped. She was diagnosed with pyridoxine dependant > > > seizures and sent home. This lasted for a few months until the > > > seizures returned (as they always do) so the pyridoxine was > > > discontinued. This was re-started a few months ago in a desperate > > > attempt to regain control but with no effect. > > > > > > Astrid has had many hospital stays including ICU twice. She has had > > > many EEG's which have ranged from 'zero seizure activity' to 'severe > > > > > encephalitis' (which she quite obviously did not have; Two MRI scans > > > > > showing 'slight asymmetry of the frontal horns' which seems to have > > > no clinical significance; Blood tests for metabolic disorders (all > > > negative); SPECT scan showing some areas of abnormal function; > > Lumbar > > > puncture which was 'essentially normal' and the 'Woods Light' test - > > > > > nothing found. > > > > > > I mentioned earlier that each time seizure control is gained it > > > always lost again. The amount of seizures will always increase > > > gradually and her appetite decreases in direct correlation to the > > > number of seizures until she is having them all day and night and > > her > > > appetite has disappeared. This is the point that we end up in > > > hospital on IV fluids, bolus feeds and enough drugs to make a junkie > > > > > jealous ;-). This time was different. > > > > > > Her seizures were increasing (at about 20 per day) and her appetite > > > decreasing till it looked like another visit to the hospital was > > > inevitable (the next plan is to remove Oxcarbazepine and start > > > Keppra). I read on my Home Education Special Needs list that people > > > were supplementing their children's diet with flax oil and other > > > essential fatty acids and were getting results with behavioural > > > problems and learning difficulties, so after some research I > > excluded > > > Evening Primrose Oil as this seemed to cause seizures in prone > > > children, and decided upon flax oil due to the high proportion of w3 > > > > > fatty acids, so I began giving her 10mls per day with anti- oxidant > > > vitamin E 200iu (to aid the metabolism of the flax), hoping to see > > > improvements in behavior, learning and speech. The results were > > > beyond my wildest dreams. The very next day she had only 2 or 3 > > > seizures, the following day only 1 and after 3 days of starting the > > > flax oil she was seizure free! I am aware that this may have been a > > > co-incidence but as I have mentioned, deterioration in seizure > > > control has only ever been stopped by hospital admission and weeks > > of > > > drug experimentation. I consider this to be a small (though not so > > > small to us) miracle and I cannot believe that her fits have stopped > > > > > without the horror of being in hospital. > > > > > > So, I have begun to research the role of fatty acids in neurological > > > > > disorders and found that flax oil has been shown to improve seizures > > > > > and that a deficiency in vit E has been show to cause seizures, so > > we > > > do not know as yet whether we have this result from flax or from vit > > > > > E or both. I know how to find out, but I don't want to change > > > anything at the moment as we are enjoying being seizure free (apart > > > from the odd `flicker'). I am now on a quest for information, I will > > > > > stop at nothing to get Astrid as well as she can be and to get her > > > off as many drugs as possible as I am sure they contribute to, if > > not > > > cause her ataxia and development/behavior problems. I now have full > > > confidence in nutritional therapies and am becoming increasingly > > > sceptical of allopathic medicine. I have decided to consult a > > > naturopath as I want to optimise Astrid's nutritional state, > > > including counteracting any deficiencies caused by her medication. > > > > > > I am currently reading Udo's `fats that kill, fats that heal.', and > > > enjoying learning chemistry with a purpose! I would really value > > > input from you guys as I am unsure where to go next, what books have > > > > > you read that has helped you in your quest for health, recommended > > > websites, relevant studies, anything and everything, not to mention > > > the value of your experience. > > > > > > Our life has at times been extremely difficult and I had resigned > > > myself to a lifetime of drugs and hospitals. I so desperately want > > > Astrid to be the person she really is, inside, and would give > > > anything, do anything to make her well. I am so exited to at last be > > > > > pro-active in her care, it felt so difficult, and wrong to be so, > > > well, hopeless. I would stand by and believe that the doctors were > > > doing the very best for her as they gave her drug after drug, and > > > while I do not doubt their intentions, I see now that the holistic > > > approach stands a better chance. I really look forward to sharing > > > with you, thankyou for taking the time to read this. > > > > > > Love > > > > > > > > > > > > " 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@y... > > > Unsubscribe: ketogenic-unsubscribe@y... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 , No, 2.3:1 (two point three to one) means 2.3 parts fat to every one part of combined carb and protein. Sorry..... I get so used to talking in ratios that I almost assume everyone else in the world does, too! Anyway, Katera is considered to be on a fairly low ratio right now..... less fat and more protein and carbs..... than most Keto Kids. Hope that helps clarify. Yes, I can believe your neuro hasn't ever suggested it. We went through four other neuros before our current one and the two most recent ones both said the diet was absolutely a TERRIBLE idea.... and that it wouldn't work for Katera. Truth is.... they just knew very little about it. Patti Re: Astrid Patti- that is so fantastic! Can you believe that after 3+ years of intractable seizures our neuro has never even suggested the kgd?Tegretol (thats carbamazepine right?) always worked for Astrid (initially) but the side effects were getting too much to bare - her ataxia got so bad she couldn't even stand up, it was substituted for oxcarbazepine. 2:3:1 thats carb:fat:protien? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 We tried flax oil and got a number of seizures following and when we stopped it they went away. We used quite a bit of flax oil at the time; basically replacing the canola oil with flax. We still have seizures every day. There were other things going on at the same time; vomiting, reflux, diarhea, etc. So couldn't precisely say that flax was to blame, but we were trying to simplify things. We may try it again at some point. Bill Re: Re: Astrid > Also, just to through more confusion in here, I had > been on the SpeechDiet list for awhile and was very > excited about their discussions on a ProEFA > supplement. I tried it with and really did see a > nice " perk up " and increase in vocabulary, etc. -- but > a couple days later we started to have lots of > seizures creep back in. I traced it back to the > Borage Oil in the ProEFA. Borage is in the same class > as Evening Primrose. I think Barb's right with her > comments below, but I'm still finding that can't > tolerate the good stuff. Only tried flax once (and my > dietician stupidly calculated in 16g), but we saw > problems. I've been trying things out very slowly > just to see. I really wish I could have seen some > answers from the ProEFA or any of these other good > oils -- just not happening here. Just a funny aside > --I posted about this on the Speech Diet list and kind > of got shut down -- they wouldn't even send out my > post for fear of " scaring other Moms " ! The thing is > that for many, probably most, kids, it's fine. . . but > our kids are all so individual that it's really trial > and error (unfortunately, the error here is > seizures).--D > > > --- martinccf@... wrote: > > > > > > On Sun, 30 Dec 2001 20:08:16 -0000 " ziggyhindson " > > writes: > > > > Hi Jenn, > > > > I've read a lot about flax oil these last couple of > > weeks but > > nothing to suggest it may *cause* seizures, I'd be > > interested to > > learn more about this. I was aware that EPO could > > exaserbate > > seizures, so have avoided it. > > > > I have heard this referenced to time and time > > again..and with > > everyting else...your mileage may vary. I think > > the EPO comes in play > > with > > the fact that most of us are deficient in w3 fatty > > acids (flax) and > > Evening > > Primrose Oil contains the GLA found in w6 oils. I > > think supplementing > > with w6 in an already out of balance system (to much > > w6 and not enough > > w3) could create an even worse situation. Lack of > > w3 could defiantly > > contribute to increased seizuers! > > > > I use to have the study that is always referred > > to...they supplemented > > schizophrenics with EPO and they had increased > > sieuzres. What they > > dont tell you is what else they were eating. again > > I believe this is do > > to a > > deficiency in w3 fats. > > > > The suggested dose is between 1 tsp > > and 2 tbsps (5-20mls) and you just see what works > > for you. > > > > I believe that the usual amount is one Tbl for every > > 100 lbs. or 1 tsp > > for every 35 > > or something like that, but this is for regular > > people on a regular diet. > > I think > > our kids fall into a different category all > > together. takes > > 60-70gms a day (he is adult > > size at 170lbs.) High amounts of flaxseed oil will > > increase the > > metabolism (which > > Bry needs) and actually help you loose weight!!!!!! > > (also had this study > > at one > > time) > > > > Somthing else to consider...in an indepth > > conversation with several > > biochemists I found > > that flaxseed oil is an absolutely perfect addition > > to this diet with it > > being highly absorbable > > and digestible...a great fuel!! > > > > and again...YMMV...your mileage may vary. I think > > some kids with a > > processing or > > elimination problem might end up with a buildup of > > VLCFA (very long chain > > fatty > > acids) which would increase seizures...I think all > > the nutrients > > necessary for > > processing should be addressed FIRST!! and yes the > > very important > > antioxidants!! > > > > takes 2000mgs of C, 800mgs of E (make sure its > > natural E not > > synthetic) > > and also essential Selenium and CoQ > > > > BArb....s mom > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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