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Medical Forum / Diseases and Disorders / Epilepsy / September 2006Alternative/Natural Remedies
My wife is dead-set on switching from drugs/tests to an all natural or alternative way to help our daughter with her epilepsy. What are your thoughts and/or recommendations on this subject? > My wife is dead-set on switching from drugs/tests to an all natural or > alternative way to help our daughter with her epilepsy. What are your > thoughts and/or recommendations on this subject? In my case, Chinese medicine has proved very helpful. This means acupuncture along with herbal medicine. Practicing Tai Chi or similar, related exercises may also have a good deal of effect. I do not really know if it has cured the epilepsy or "just" the things triggering it (ie. insomnia, stress etc), but as I have kept some sort of statistics for my condition for several years, I am quite convinced that it has worked for me. The first time I let it have a go, was some 5 or 6 yrs ago. At that time it helped my insomnia a lot (which was/is the main trigger for me) and my daily-shape-statistics were also much improved. Things got a bit worse after a few years, though, and I had almost forgotten my acupuncturist until this summer. I called her up when she was back from her annual holiday and seminars in her native China, and things got remarkably better only after my first visit there. Placebo or not, all I know is that it makes me feel a whole lot better, and I won't hesitate before going back if (when) it becomes necessary again. If you should try this, make a little effort to make sure you find a proper and well educated acupuncturist. There's a lot of quacks out there . . . . Hope this helps, and best of wishes, ole k > My wife is dead-set on switching from drugs/tests to an all natural or > alternative way to help our daughter with her epilepsy. What are your > thoughts and/or recommendations on this subject? Perhaps it you told the group which type of seizures she was having, and even what meds. she has tried you might get more replies. There are several szr. types and while some things might work for e.g. simple partials, they might not necessarily for complex partials or other types which might be triggered by brain damage or other causes (mine were from damage from encephalitis). If your daughter is already using some of the anti-ep medications, and she plans to reduce them, those should be done with the original Doctor's guidance as prompt withdrawal of a few can cause increase in szr. activity unless it's done gradually. G./ > > My wife is dead-set on switching from drugs/tests to an all natural or > > alternative way to help our daughter with her epilepsy. What are your [quoted text clipped - 10 lines] > Doctor's guidance as prompt withdrawal of a few can cause increase in > szr. activity unless it's done gradually. G./ Gordon asks some good questions, also how old is your child. I recently went to a conference for doctors and health care provider's regarding epilepsy. They mentioned how important it is to help children get their seizures controlled during their young years because they are learning so much. But if their brain is having seizures, they miss out on so much and this can effect their future. Take care, Julie >My wife is dead-set on switching from drugs/tests to an all natural or >alternative way to help our daughter with her epilepsy. What are your >thoughts and/or recommendations on this subject? Epilepsy is not a minor disorder. Uncontrolled seizures can impair learning abilities, and, in severe cases, can cause permanent disability and even death. The standard (scientific) medications are quite effective; and, if they are managed correctly, side-effects are not a serious problem. Best, Bob Robert A. Fink, M. D., FACS, PC Neurological Surgery 2500 Milvia Street Suite 222 Berkeley, California 94704-2636 *********************************** NOTE: The material contained in this message is not "medical advice". Medical advice can only be given after a face-to-face, "hands on" session between doctor and patient. *********************************** "Ex Tristitia Virtus" >My wife is dead-set on switching from drugs/tests to an all natural or >alternative way to help our daughter with her epilepsy. What are your >thoughts and/or recommendations on this subject? Epilepsy is not a minor disorder. Uncontrolled seizures can impair learning abilities, and, in severe cases, can cause permanent disability and even death. The standard (scientific) medications are quite effective; and, if they are managed correctly, side-effects are not a serious problem. Best, Bob Robert A. Fink, M. D., FACS, PC Neurological Surgery 2500 Milvia Street Suite 222 Berkeley, California 94704-2636 *********************************** NOTE: The material contained in this message is not "medical advice". Medical advice can only be given after a face-to-face, "hands on" session between doctor and patient. *********************************** "Ex Tristitia Virtus" > My wife is dead-set on switching from drugs/tests to an all natural or > alternative way to help our daughter with her epilepsy. What are your > thoughts and/or recommendations on this subject? Howdy futuresperfect! The first question that comes blazing into my mind is: WHY?? Personally, have always avoided absolutes such as: Blind faith in modern medicine, or Blind faith that modern medicine is useless. (I tend to believe that the second is the worse of 2 evils.) This is just a shot in the dark, but it sounds as if perhaps your wife is expecting too much. For many of us 100% control, is a FANTASY! The question should be: "Does this help?" NOT "Is it all better?" Howdy Docor Bob... Long time no see! Dave > My wife is dead-set on switching from drugs/tests to an all natural or > alternative way to help our daughter with her epilepsy. What are your > thoughts and/or recommendations on this subject? Howdy futuresperfect! The first question that comes blazing into my mind is: WHY?? Personally, have always avoided absolutes such as: Blind faith in modern medicine, or Blind faith that modern medicine is useless. (I tend to believe that the second is the worse of 2 evils.) This is just a shot in the dark, but it sounds as if perhaps your wife is expecting too much. For many of us 100% control, is a FANTASY! The question should be: "Does this help?" NOT "Does this make it go away?" Howdy Docor Bob... Long time no see! Dave Thank you for your replys. And now to answer a few questions: Our daughter is 14 months old and has only been taking meds (Topamax) for 2 weeks and therefore taking her off the meds would be as if she never had taken them. I believe that she is having generalized seizures with atonic components. Her EEG mentioned myclonic tendancies but I don't see a whole lot of that in comparison to the atonic tendancies. She has been noted to falling down and drooping the head up to 110 times a day. She may have had this since birth but we never noticed anything until she became more mobile. We just thought she was losing her balance or tripping on something, but couldn't explain why it was happening so often. One of the main reasons why my wife is really wanting to do the natural thing is that she has had to put up with 20 + years of having to rely on medications and surgeries and tests. When she was 6 she became ill and was found to be diagnosed with Advanced Juvenile Rheumatoid Arthritis. Since then she has had to be on every type of medication you can think of for this condition and has 5 major joint replacements. Not to mention she became quite disfigured and her growth was stunted. She hates doctors and hates medication and hates the medical field in general. With A Passion. She feels that she knows her body better than any doctor available. I have to be honest when I say that in the last 4 years of knowing her I have found her to be correct in this nature, and so I'm willing to go on her "intuition" and "motherly foreknowledge". I can understand her NOT wanting her little girl to go what she went through. Especially when this is a condition where the exact cause of her seizures are unknown. Did that help? > Thank you for your replys. And now to answer a few questions: > [quoted text clipped - 28 lines] > > Did that help? Howdy future! The big problem is that she is working with HER body. She has had direct access to all of her own sensational feedback. This is not the case when you are working with a third person -- especially an infant/child who has no communicative skills. Many of the symptoms of epilepsy (such as complex partials) are totally disassociated from any sensational feedback at all. A person is not even aware of the fact that they have some forms of seizures. In my personal experience, epilepsy is much worse for the person who has to watch it than it is for the person who is having the seizures. Although it does not surprise me very much, I must agree with Dr. Bob. You can not take your own personal experiences with one medical condition and SUPERIMPOSE them on another person who has a completely different medical condition. Dave > Thank you for your replys. And now to answer a few questions: > [quoted text clipped - 28 lines] > > Did that help? Howdy future! The big problem is that she is working with HER body. She has had direct access to all of her own sensational feedback. This is not the case when you are working with a third person -- especially an infant/child who has no communicative skills. Many of the symptoms of epilepsy (such as complex partials or tonic-clonic/grand mal seizures) are totally disassociated from any sensational feedback at all. A person is not even aware of the fact that they have some forms of seizures. In my personal experience, epilepsy is much worse for the person who has to watch it than it is for the person who is actually having the seizures. Although it does not surprise me very much, I must agree with Dr. Bob. You can not take your own personal experiences with one medical condition and SUPERIMPOSE them on another person who has a completely different medical condition. Dave > > Thank you for your replys. And now to answer a few questions: > > [quoted text clipped - 55 lines] > > Dave BTW: If you do decide to go the natural route... DO NOT SIMPLY CUT HER OFF OF HER MEDS!!!! Weaning somebody off of anti-seizure meds should be done under medical supervision! > Thank you for your replys. And now to answer a few questions: > [quoted text clipped - 4 lines] > but I don't see a whole lot of that in comparison to the atonic > tendancies. *** Not all things happening, that turn up on an EEG or MRI is necessarily something you'd notice, or that's strong enough yet to produce outward signs. The blips might be a *chance of that type being present, but just because you don't see evidence of it (yet) doesn't necessarily mean it couldn't become an issue was she matured. (I'm *not a Dr., just a thought I had when I read above. G.) She has been noted to falling down and drooping the head > up to 110 times a day. She may have had this since birth but we never > noticed anything until she became more mobile. We just thought she was > losing her balance or tripping on something, but couldn't explain why > it was happening so often. G. Not a Dr. again, but 110 incidences of *something a day seems a lot, even with a toddler. I realize little kids can fall as they learn balance and walking, but that seemed a lot. (My grandson/ 9months, is starting to stand, but when he's losing balance, he looks behind (to check where he's going down?) , then plops onto his behind without falling. He does trip a few times, usually outside right now, but less than 5-8 times a day. You know (I hope) that we can't compare apples and oranges here, but does the Dr. treating her know that too? // > One of the main reasons why my wife is really wanting to do the natural > thing is that she has had to put up with 20 + years of having to rely [quoted text clipped - 5 lines] > She hates doctors and hates medication and hates the medical field in > general. **** As Howdy-1? and I think Dr. Bob suggested, medicine has changed a lot in 20 years. Medical conditions that were a puzzle even 5 years ago, are now recognized via MRIs or EEGs by the signature of what's happening when the events occur. Someone I knew even had an erratic heart rate, and her's only showed up on an EKG (heart monitor)-- the periodic hiccup in her heart rate affected oxygen intake and her stumbling (*not seizures), was caused when this symptom was occurring. In that case a different set of meds. are used than for some of the seizure types./ With A Passion. She feels that she knows her body better > than any doctor available. I have to be honest when I say that in the > last 4 years of knowing her I have found her to be correct in this > nature, and so I'm willing to go on her "intuition" and "motherly > foreknowledge". *** I'm still with Howdy Dave on this though. In 4? years she'll be at school, and away from you both. Even at 14 months, she can't really tell you what she's feeling when these occur (I assume). And as she's had them since birth? any events as she matures are 'normal' to her, so strange aromas or deja vu feelings (symptoms of some stronger szr. types) wouldn't be something she'd think of as unusual. They're the way she's always felt, so nothing she'd easily describe to you or a Doctor. // > I can understand her NOT wanting her little girl to go what she went > through. Especially when this is a condition where the exact cause of > her seizures are unknown. > Did that help? Partly. Someone really young might have a more difficult time getting a med. balance that's stable than some of us 'Olde people' can with stable body weight and metabolism (digestion rate of products moving to blood system). 1.) Did they say why advanced juvenile myoclonic *arthritis might be related to JME (juvenile myoclonic epilepsy) ? I'm not a Dr. so just wondered if one (they thought) caused or aggravated the other, or what? 2.) For any others reading this group, did they do any EEGs or MRIs as part of the diagnosis? *Some of those can help see where electric spikes are happening, or (MRI) damage or ?? might be causing them. **Many people here over last ~8 years had clean EEGs until they had a longer (sleep deprived) one, but they were adults and could take those types of tests. The sleep deprived type might not be meaninful for a young person. Keep reading the group from time to time, or keep us posted. *Some people only look in here 2-3x a week, less even during summer, so there could be other Parents with experiences for you who might not see your posts for a few days. They're not ignoring your questions, just not reading here as often as some of the rest of us do. G./ > Thank you for your replys. And now to answer a few questions: > > Our daughter is 14 months old and has only been taking meds (Topamax) > for 2 weeks and therefore taking her off the meds would be as if she > never had taken them. Not really. Taking a patient off anti-epileptic drugs has to be done very carefully. If you just stop cold turkey, that could actually trigger a seizure. And there are different types of seizures, some can be fatal. Please consult your doctor first. I am looking through my notes from the conference I attended. Here are a few points from a Professor at UCLA, her presentation was entitled: Speical Issues in Pediatric Epilepsy: What's so different about kids? - 3/4 patients with epilepsy do not have an identifiable cause - Children have more predisposition to seizures compared to adults many may improve with time and are often benign - Most seizures, if not benign, are extratemporal in children rather than temporal in adults - Often seizures in children affect wide areas and multiple lobes compared to adults - Often seizure control may have developmental implications - Cognitive issues can be severely affected with poor seizure control in children more often than adults - Need to treat epilepsies as quickly as posssible and in any way possible (surgery, meds, etc) in order to improve development due to plasticity in kids - Need to be sensitive to type of medication route in children as well as need for routine labs - Children have faster metabolism and drug clearance than adults with constant need to change dosing of medication - Specific side effects with different anticonvulsants are unique to children I also noted that newer drugs have less side effects. It depends on the seizure type to find seizure control. > I can understand her NOT wanting her little girl to go what she went > through. Especially when this is a condition where the exact cause of > her seizures are unknown. I understand your wife's concerns because of her own history with mecical issues. I was very hesitant to change my medication for epilepsy because when I had tried in the past I had such severe side-effects. But this last year I decided to give the newer drugs a try. I also have excellent help from my new doctor. I am very slowly going off phenobarbital and have been on Keppra. Things are getting better for me. I am very pleasantly surprised by the results. You and your doctor's goal shoud be to control the seizures with no bad side-effects. But if your goal is no bad side effects, but you are not controlling the seizures - you will have a bad side-effect - your child will not have the ability to develop her cognitive skills. Your child is at her prime time to develop, age 1 to 5. I would say this is the key point. If your child had heart disease would you choose a natural remedy? Sorry, didn't mean to sound harsh. I'm sure as a loving parent you recognize the importance of looking at the big picture. Please let us know how things are going. It has got to be terribly stressful to have a child with epilepsy. Take care, Julie >Our daughter is 14 months old and has only been taking meds (Topamax) >for 2 weeks and therefore taking her off the meds would be as if she >never had taken them. I believe that she is having generalized >seizures with atonic components. Her EEG mentioned myclonic tendancies >but I don't see a whole lot of that in comparison to the atonic >tendancies. The above is disturbing. Continuation of seizures in a patient this young could impair brain development processes; and, if indeed, a seizure disorder is present, it needs to be dealt with ASAP! If you have not done so as yet, take the patient to a pediatric neurologist, who is specialized in the care of young children. Best, Bob Robert A. Fink, M. D., FACS, PC Neurological Surgery 2500 Milvia Street Suite 222 Berkeley, California 94704-2636 *********************************** NOTE: The material contained in this message is not "medical advice". Medical advice can only be given after a face-to-face, "hands on" session between doctor and patient. *********************************** "Ex Tristitia Virtus" |
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