Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 http://www.nutramed.com/brain/brain_nutrition.htm http://www.manitobaepilepsy.org/nutrition.html http://www.healingwithnutrition.com/edisease/epilepsy/epilepsy.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Barb, Maybe your doctor was not being clear. If GABA had to be injected to be absorbed by the brain, the whole planet would be in deep doo doo! All the nutrients work together, none are stand-alone. GABA needs other nutrients, like glutamate and B6, in the proper balance to be well synthesized. I strongly recommend you get a copy of the new edition of " The Healing Nutrients Within. " It's mostly about amino acids and is a wealth of information. Braverman is one of the authors. They have some excellent sections on amino acids and seizures. We have to keep hunting until we find the things that click for us. I didn't find any references to it being injected. Weird. Also, your pharmacist may be able to help you with this question. The article below gives more information. I suggest keep looking at how things may be related. We do not usually wonder how B6 is related to neurotransmitters, but we need to if we want to understand how to manage seizures with diet. Zoe This article on WholeHealth MD, includes stuff on seizures, effectiveness of supplements, and dosage. http://www.wholehealthmd.com/refshelf/substances_view/1,1525,10027,00. html While you are at this page, do a search on epilepsy--much good nutrition information there! " Better Nutrition March, 1999 `I think I can, I think I can ...': 5 brain chemicals and why they're important. Author/s: Ray Sahelian 5 brain chemicals and why they're important. " Full article: http://www.findarticles.com/cf_0/m0FKA/3_61/54017847/print.jhtml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Barb wrote: Zoe > Thank you for your help. This journey is exhausting, thanks for your encouragement. Sorry you've been through so much yourself. You are amazing. > Her seizures have broken through Trileptal, and now they are starting to try Topamax. She's on Taurine, Magnesium, B Complex (when I can get it in her), all the Manatech products, folic acid. Can you tell if I should be giving her anything else to support her body or to attempt to get her seizure free naturally? (I'm still in the process of reading all the recommended books so I'll see if I get anymore ideas. If this questions is too involved for you right > now, I'll understand. You might not have the time.) Thanks, Barb -------- Hi Barb, It does wear anyone out, there are so many things that can trigger seizures. Any of us who keep searching for how to help ourselves winds up very well read! I hope you will keep an eye on the taurine, as it increases stomach acid and can cause peptic ulcers. Even when something helps, like taurine, we have to be careful not to see if the benefits are long or short term. If you are doing any searching on the web, I suggest you look up any of the foods she eats or drinks a lot and seizures. This would be like a google search, " seizures " " artificial sweeteners " " seizures " " milk " , etc. You can turn up a lot of information that way. Also, if she is not on a gluten and lactose, and free diet, you may want to give it a try and see if it changes her seizure patterns. Sugar may lower her seizure threshold also. Does she like raw carrot juice? Fresh vegetable juices are a way to fast and get rid of some toxins. Did she have a full evaluation with a specialist in metabolic disorders? There are more than a hundred inborn errors in metabolism linked to seizures. Another unsuspected cause may be cardiac disorders. Are you familiar with Haas' detox diet? That is pretty safe to try. If she feels better on it, it may help point to what is causing her seizures. We have to be vigilant with seizures, but need to pull back sometimes to get our thinking clear and not stay in a crisis mode. . Are you keeping a detailed seizure log of all the symptoms she has with a seizure and all the things you observe when she has one, like time of day, what she'd eaten, etc.? The log helps you to find patterns that can point to triggers, or even the cause, of her seizures. If you can predict when she is likely to have a seizure, then you have a tool for finding ways to prevent them. First of next month I will start some physical therapy and that should help a lot with the back pain. The neurologist says this cavity in my spinal cord may not get any larger, that they tend to stabilize once they've formed. We are going to try and strengthen my spine which will ease most of the pain. My osteoporosis is in the lumbar spine and the other pain is in the cervical spine. Only the bone spurs are in the thoracic spine, where the cavity (syrinx) formed. Most of my symptoms may be due to this stuff not the syrinx. We hope the physical therapy will better accommodate the cavity and keep it from getting worse. I'm getting back into my daily walking or bike riding and that helps a lot too. Some days I get really frustrated too. It helps to keep these challenges in perspective, just obstacles along our paths, but nothing that will stop us from living fully and with purpose. Keep your hope and your committment. Trust your own instincts how to help your daughter. One important link on cognitive impairment from seizure drugs will be in a separate message. More links below. Zoe This turned up at the FDA in a search on how topamax side effects: Topamax (topiramate) http://www.fda.gov/medwatch/safety/2001/safety01.htm#topama Audience: Neurologists, Ophthalmologists, and other Healthcare professionals FDA and Ortho-McNeil have strengthened the WARNINGS and PRECAUTIONS sections in the label of Topamax Tablets and Sprinkle Capsules, indicated as adjunctive therapy for adults and pediatric patients ages 2-16 years with seizure disorders. Cases of secondary angle closure glaucoma characterized by ocular pain, accute myopia, and increased intraocular pressure were reported in pediatric and adult populations. The primary treatment is discontinuation of Topamax. If left untreated, serious sequelae, including permanent vision loss, may occur. Patients taking Topamax should be told to seek immediate medical attention if they experience blurred vision or periorbital pain. [sept 26, 2001 Letter - Ortho-McNeil] PDF Format [Oct 1, 2001 Label - (Revised sections only) - 15k PDF file] [Oct 1, 2001 Label - (Full revised label) - 98k PDF file] Return to Top | MedWatch Home | MedWatch Safety Info | Online MedWatch Report | Contact Medwatch ------------------- Another search shows more dangers of topamax: http://www.pharmacynetworkgroup.com/topamax-side-effects.htm " The most commonly observed adverse events associated with the use of topiramate at dosages of 200 to 400 mg/day in controlled trials, that were seen at greater frequency in topiramate-treated patients and did not appear to be dose-related were: somnolence, dizziness, ataxia, speech disorders, and related speech problems, psychomotor slowing, nystagmus, and paresthesia [see Table D]. The most common dose related adverse events at dosages of 200 to 1,000 mg/day were: fatigue, nervousness, difficulty with concentration or attention, confusion, depression, anorexia, language problems, anxiety, mood problems, cognitive problems not otherwise specified, weight decreased, and tremor [see Table E]. " ------------- It may be easy to confuse cognitive impairment from seizure drugs with developmental disorders. Sometimes the " developmental disorders " are drug-induced " I don't know this doctor, , MD, but you may want to check her out and post to the forum on her site. She was healed from some life threatening disease and is now oriented to alternative medical treatments. You can also contact her from her web site. I'd be a little wary as she is selling herbals over the net. It could be dangerous to give your daughter herbs or vitamins without doing some very thorough searching on how they might interact with her meds, or if they are even safe. http://www.alternativedr.com/conditions/Lookups/Interactions/Topiramat ecd_interactions.html AlternativeDr.com - Topiramatecd_interactions .... Brand names: Topamax®. Learn more about Topiramate Click on an herb or supplement below to learn how it interacts. Carnitine (L-Carnitine); Evening Primrose; ... http://www.alternativedr.com/conditions/Lookups/Interactions/ Topiramatecd_interactions. ---------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2003 Report Share Posted September 30, 2003 Dear Barb, Keep in mind that the cognitive side effects are happening because the drug is damaging to her, and who knows how much she can tolerate before there is permanent or life-threatening injury? It is terrible to have to choose between those options with the drugs. You might also want to contact the manufacturing companies and ask them what they suggest to deal with the side effects and if they can guarantee she won't receive long term impairment of any kind from using them. Have you contacted Mark Schauss in this group? He might have some very good insigts for you on what to be looking for after what he went through when his daughter developed seizures. In a separate message is an article about organic acidemia. Is this anything you've looked into? Also, more links below on valporic acid. A couple of abstracts on research is in a separate post.The danger of liver damage is well documented with valproate. This link is to the Metabolic Disorders National Affiliation: http://www.metdna.org/disorders.shtml They seem to have information, support, and resources. It looked pretty upbeat. It may be very helpful for you to contact them about your daughter's symptoms and see if it sounds familiar to them. Somewhere, in between the crises, we manage to slip in some plain old everyday living. I rode my bike to town for tea with friends early this morning. Tomorrow is my first day of physical therapy. I think a good hot pack pain treatment will give me a new lease on life. Keep on keepn' on! Zoe http://www.umm.edu/altmed/ConsDepletions/AnticonvulsantMedicationsValp roicAcidDerivativescl.html Valproic acid .... unbound valproic acid levels in the serum. Safety and efficacy of divalproex sodium have not been determined for treating acute mania in children less than 18 ... www.nursespdr.com/members/database/ ndrhtml/valproicacid.html Entrez-PubMed .... Abstract, Polycystic ovaries, obesity and insulin resistance in ... Thyroid hormones in epileptic children receiving carbamazepine and valproic acid. ... www.ncbi.nlm.nih.gov/entrez/ query.fcgi? cmd=Link & db=PubMed & dbFrom=PubMed & from_uid=12088081 Valproic Acid and Derivatives .... Signs of liver failure include dark urine, feeling tired ... This may occur in children or adults at anytime during ... If you have an allergy to valproic acid or any ... www.usadrug.com/IMCAccess/ConsDrugs/ ValproicAcidandDerivativescd.shtml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Barb, This is the link to Mark's company http://www.carbonbased.com/ --may be a good resource for you. Zoe > Zoe, > > Thanks. I've sent out a request for contact to Mark, and have emailed > organic acidemia. I spend most of my day feeling sick to my stomach and > cornered between an avalanche and a hurricane. With the drugs she's a > different person emotionally and cognitively and without them she's having > 1-12 seizures/hr. I can't believe that prior to March all was > fine!!!!!!!!!!!!! > > Barb > [ ] Re: Nutrition and the brain--links > > > > Dear Barb, > > > > > > Keep in mind that the cognitive side effects are happening because > > the drug is damaging to her, and who knows how much she can tolerate > > before there is permanent or life-threatening injury? > > It is terrible to have to choose between those options with the > > drugs. You might also want to contact the manufacturing companies and > > ask them what they suggest to deal with the side effects and if they > > can guarantee she won't receive long term impairment of any kind from > > using them. > > Have you contacted Mark Schauss in this group? He might have some > > very good insigts for you on what to be looking for after what he > > went through when his daughter developed seizures. In a separate > > message is an article about organic acidemia. Is this anything you've > > looked into? Also, more links below on valporic acid. A couple of > > abstracts on research is in a separate post.The danger of liver > > damage is well documented with valproate. This link is to the > > Metabolic Disorders National Affiliation: > > http://www.metdna.org/disorders.shtml They seem to have information, > > support, and resources. It looked pretty upbeat. It may be very > > helpful for you to contact them about your daughter's symptoms and > > see if it sounds familiar to them. > > Somewhere, in between the crises, we manage to slip in some plain > > old everyday living. I rode my bike to town for tea with friends > > early this morning. Tomorrow is my first day of physical therapy. I > > think a good hot pack pain treatment will give me a new lease on > > life. Keep on keepn' on! > > Zoe > > > > > > http://www.umm.edu/altmed/ConsDepletions/AnticonvulsantMedicationsValp > > roicAcidDerivativescl.html > > > > Valproic acid > > ... unbound valproic acid levels in the serum. Safety and efficacy of > > divalproex sodium > > have not been determined for treating acute mania in children less > > than 18 ... > > www.nursespdr.com/members/database/ ndrhtml/valproicacid.html > > > > Entrez-PubMed > > ... Abstract, Polycystic ovaries, obesity and insulin resistance > > in ... Thyroid hormones > > in epileptic children receiving carbamazepine and valproic acid. ... > > www.ncbi.nlm.nih.gov/entrez/ query.fcgi? > > cmd=Link & db=PubMed & dbFrom=PubMed & from_uid=12088081 > > > > Valproic Acid and Derivatives > > ... Signs of liver failure include dark urine, feeling tired ... This > > may occur in children > > or adults at anytime during ... If you have an allergy to valproic > > acid or any ... > > www.usadrug.com/IMCAccess/ConsDrugs/ > > ValproicAcidandDerivativescd.shtml > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Barb, This link is to the article about Mark and his daughtrer's seizures! http://www.carbonbased.com/modules/sections/index.php? op=viewarticle & artid=7 > Zoe, > > Thanks. I've sent out a request for contact to Mark, and have emailed > organic acidemia. I spend most of my day feeling sick to my stomach and > cornered between an avalanche and a hurricane. With the drugs she's a > different person emotionally and cognitively and without them she's having > 1-12 seizures/hr. I can't believe that prior to March all was > fine!!!!!!!!!!!!! > > Barb > [ ] Re: Nutrition and the brain--links > > > > Dear Barb, > > > > > > Keep in mind that the cognitive side effects are happening because > > the drug is damaging to her, and who knows how much she can tolerate > > before there is permanent or life-threatening injury? > > It is terrible to have to choose between those options with the > > drugs. You might also want to contact the manufacturing companies and > > ask them what they suggest to deal with the side effects and if they > > can guarantee she won't receive long term impairment of any kind from > > using them. > > Have you contacted Mark Schauss in this group? He might have some > > very good insigts for you on what to be looking for after what he > > went through when his daughter developed seizures. In a separate > > message is an article about organic acidemia. Is this anything you've > > looked into? Also, more links below on valporic acid. A couple of > > abstracts on research is in a separate post.The danger of liver > > damage is well documented with valproate. This link is to the > > Metabolic Disorders National Affiliation: > > http://www.metdna.org/disorders.shtml They seem to have information, > > support, and resources. It looked pretty upbeat. It may be very > > helpful for you to contact them about your daughter's symptoms and > > see if it sounds familiar to them. > > Somewhere, in between the crises, we manage to slip in some plain > > old everyday living. I rode my bike to town for tea with friends > > early this morning. Tomorrow is my first day of physical therapy. I > > think a good hot pack pain treatment will give me a new lease on > > life. Keep on keepn' on! > > Zoe > > > > > > http://www.umm.edu/altmed/ConsDepletions/AnticonvulsantMedicationsValp > > roicAcidDerivativescl.html > > > > Valproic acid > > ... unbound valproic acid levels in the serum. Safety and efficacy of > > divalproex sodium > > have not been determined for treating acute mania in children less > > than 18 ... > > www.nursespdr.com/members/database/ ndrhtml/valproicacid.html > > > > Entrez-PubMed > > ... Abstract, Polycystic ovaries, obesity and insulin resistance > > in ... Thyroid hormones > > in epileptic children receiving carbamazepine and valproic acid. ... > > www.ncbi.nlm.nih.gov/entrez/ query.fcgi? > > cmd=Link & db=PubMed & dbFrom=PubMed & from_uid=12088081 > > > > Valproic Acid and Derivatives > > ... Signs of liver failure include dark urine, feeling tired ... This > > may occur in children > > or adults at anytime during ... If you have an allergy to valproic > > acid or any ... > > www.usadrug.com/IMCAccess/ConsDrugs/ > > ValproicAcidandDerivativescd.shtml > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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