Guest guest Posted September 14, 2011 Report Share Posted September 14, 2011 Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. Also, does changing the child's/teen's diet to gluten free help? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2011 Report Share Posted September 14, 2011 Yes, our 20 year old daughter had them (grand mal)(now under control by medications). Her doctors report that total control is not always achieved even with medication. I feel the the gf/cf diet helps because if you are not on the diet and you have lower levels of CD26 (an enzyme which helps to break down gluten and casein) as is the case in autism, opioid peptides will be elevated, The opioids, in addition to direct opioid actvity issues, are neuroinflammatory. The consequence will be a depletion of GABA (one of the natural suppressors of neuro-excitation). Hence the threshold for seizures will be lowered. I believe that the main benefit of the gf/cf diet is the elevation of GABA as far as the brain is concerned. Elevating GABA is also known to be conducive speech. > > Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > > Also, does changing the child's/teen's diet to gluten free help? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 My daughter, now 21 has a history of seizures. They began at approximately 9 months of age, it was only two years ago that a " reason " was found. I don't know if your daughter fits the profile, I am thinking from the post that she has just begun to have seizures. It may be worth a test, a " look see " , genetics and a test for PCDH 19. Another consideration is that stress can bring on seizures...hormonal change, that sort of thing. An EEG is most certainly worth doing!!! In 's case her EEG would most often appear " normal " unless she was in seizure mode. Absolutely worth doing!!! If your daughter tends to become fidgety they may give her something before the EEG, it takes time to place the multi colored wires on her head, would fidget! I hope the seizures stop and I hope the docs come up with a " why " ! Best to you. Arms around... Mother of Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 , I'm curious if you'd share what 'reason' was found for your daughter's seizures and if she still has them now, and what (if any) medications she's on to avoid them. My daughter now 8, also has a history of seizures, her's started around 7 months old. She has been on a multitude of medications and cocktails to try and stop them. She'd had multiple EEG's, MRI's and CT scans and while they did find a minor Arnold Chari Malformation, it was determined that it was not the cause of her seizures as it's not having any effect on her as of yet, and no other cause was seen. EEG's always come back 'normal' It wasn't until we got a new neurologist that actually specializes in Epilepsy and is the head of the department at the children's hospital, that we were able to actually see a seizure on the EEG as he admitted her to hospital for a continual monitoring on the EEG while weaning her meds until she had a seizure (something my husband and I had questioned since she was a baby and they kept saying that they didn't know exactly where the seizures were since they'd not been able to catch one on EEG) They did not however ever give her anything to calm her for applying the 'cap' as they said it would effect the readings, she just had to be held down by several nurses while the other applied all the wires. Anyway, we've finally found a medication (Depakote) that has allowed her to go one year without a seizure (unfortunately she had one this summer after having her appendix removed because she missed 2 doses of her meds while awaiting surgery and then the stress of being sick and surgery) Having early onset seizures did delay our diagnosis of Autism as any delays and behaviors she'd that had me concerned, the dr. would say it could simply we a result of all the meds she'd been on and we needed to wait till she was off of them a certain length of time. Not that it had any impact on her services really, she still had lots of therapy minutes allotted, just not an actual diagnosis. Theresa > ** > > > My daughter, now 21 has a history of seizures. They began at > approximately 9 months of age, it was only two years ago that a " reason " > was found. I > don't know if your daughter fits the profile, I am thinking from the post > that she has just begun to have seizures. It may be worth a test, a " look > see " , genetics and a test for PCDH 19. Another consideration is that stress > > can bring on seizures...hormonal change, that sort of thing. > An EEG is most certainly worth doing!!! In 's case her EEG would > most often appear " normal " unless she was in seizure mode. Absolutely worth > > doing!!! If your daughter tends to become fidgety they may give her > something before the EEG, it takes time to place the multi colored wires on > her > head, would fidget! I hope the seizures stop and I hope the docs > come up with a " why " ! Best to you. Arms around... > > Mother of > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Hi , my daughter Camille first started experiencing seizures in June of 2009 when she was 11. Her neurologist said that her seizures were most likely related to onset of puberty. She's 13 now, and has been taking Trileptal for the past two years with good control of her seizures. Her neurologist said that about 80% of kids that have seizures related to onset of puberty will outgrow them, so in October we will start weaning her off the Trileptal, and hopefully, she'll remain seizure free. I can't speak to the gluten free diet, but good luck with your daughter! > > Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > > Also, does changing the child's/teen's diet to gluten free help? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 I am hoping it is hormonal and she will outgrow it. I will be talking to her doctor today about getting an EEG for my dear girl. So far it has been three days in a row she has had a seizure. I am almost wondering if she could also have a food allergy, this has happened, in consecutive order, only since I have been giving her Godiva dark chocolate to help relieve her anxiety. I know, I might be grasping at straws, but sometimes straws are the only thing I have to grasp. Re: seizures Hi , my daughter Camille first started experiencing seizures in June of 2009 when she was 11. Her neurologist said that her seizures were most likely related to onset of puberty. She's 13 now, and has been taking Trileptal for the past two years with good control of her seizures. Her neurologist said that about 80% of kids that have seizures related to onset of puberty will outgrow them, so in October we will start weaning her off the Trileptal, and hopefully, she'll remain seizure free. I can't speak to the gluten free diet, but good luck with your daughter! > > Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > > Also, does changing the child's/teen's diet to gluten free help? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Activated vitamin D reduces the seizure threshold by making brain tissue less likely to seize. Vitamin D reduces the incidence of seizures in patients with intractable seizures. Most people are deficient, so it's important to have levels tested. I know several people who have gotten their children off their seizure meds just getting by eliminating all sources of MSG (found in practically all prepared foods and frozen dinners - masked under about 10 different names) and giving them magnesium (preferably magnesium taurate with vitamins B6 and D3 to ensure utilization). They quit having seizures. They were on maximum dosages of medications and still having seizures. Most neurologists and neurosurgeons that treat seizures are not aware of this and don't bother to educate themselves or their patients. These excitotoxic additives are hidden under the terms hydrolyzed vegetable protein, protein isolate, protein extracts, caseinate, and natural flavorings. Another damaging excitotoxin is Aspartame, which has increased exponentially in all our foods. Some of the many aspartame toxicity symptoms reported include seizures, headaches, memory loss, tremors, convulsions, vision loss, nausea, dizziness, confusion, depression, irritability, anxiety attacks, personality changes, heart palpitations, chest pains, skin diseases, loss of blood sugar control, arthritic symptoms, weight gain (in some cases), fluid retention, and excessive thirst or urination. The phenylalanine in aspartame lowers the seizure threshold and depletes serotonin. Lowered serotonin triggers manic depression, panic attacks, anxiety, rage, mood swings, suicidal tendencies, etc. Other excitotoxins include fluoride, aluminum, iron overload, and organophosphate pesticides and herbicides. Aspartate, glutamate, and glutamine, among other amino acids, are excitatory in excess, or in absence of sufficient fuel in the brain. They are antagonistic to the functions of taurine, alanine, GABA, and glycine. Consequently, taurine does detoxify glutamates. Taurine (and magnesium) prevents glutamate excitotoxicity through regulation of calcium and mitochondrial energy metabolism. Taurine metabolizes into sulfates which the liver uses to detoxify phenols and amines, among other things. Glutathione is the other outlet for detoxification. Most people with autism are very low in glutathione which needs to be replenished as well as does taurine. Good quality undenatured whey protein powder is an excellent way to increase glutathione and overall immunity and health. Viruses can also be causative. There are over 20 viruses that have been shown to cause seizures in people, including many that are ubiquitous and known to have latent states, such as Epstein Barr, Herpes, influenza, sackie, measles, and mumps. Chronic latent viruses are also very common in autism, as they have an affinity for brain glial cells, and can be a main underlying cause of seizures. As was already mentioned, seizure activity often ceases or is alleviated by diet changes such as GFCF and the more extreme ketogenic diet. But you can also supplement MCTs and coconut oil. When you supplement with these oils, they are converted into ketones, even if you don’t change your diet. 4 teaspoons of MCT oil and 3 teaspoons of coconut oil three times a day with meals is an effective dosage. Additionally, all allergens should be identified and removed. Another frequent cause of seizures is parasites, usually worms, so a good parasite cleanse is an excellent idea. Seizure meds also deplete the body of many vital nutrients, which can actually lead to more seizures. It's an especially good idea to supplement vitamin E, 400 IU daily (mixed tocopherols, preferably soy free). > > >> >> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. >> >> Also, does changing the child's/teen's diet to gluten free help? >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 , Thank you so much for this excellent information. It will be helpful in monitoring a number of issues my daughter has had to keep an eye on. Now I'll track some of these things with MSG, Aspartame, and Vitamin D in mind. Sandi (Allie's mom) in Houston In a message dated 9/15/2011 3:19:22 P.M. Central Daylight Time, cathybuckley@... writes: Activated vitamin D reduces the seizure threshold by making brain tissue less likely to seize. Vitamin D reduces the incidence of seizures in patients with intractable seizures. Most people are deficient, so it's important to have levels tested. I know several people who have gotten their children off their seizure meds just getting by eliminating all sources of MSG (found in practically all prepared foods and frozen dinners - masked under about 10 different names) and giving them magnesium (preferably magnesium taurate with vitamins B6 and D3 to ensure utilization). They quit having seizures. They were on maximum dosages of medications and still having seizures. Most neurologists and neurosurgeons that treat seizures are not aware of this and don't bother to educate themselves or their patients. These excitotoxic additives are hidden under the terms hydrolyzed vegetable protein, protein isolate, protein extracts, caseinate, and natural flavorings. Another damaging excitotoxin is Aspartame, which has increased exponentially in all our foods. Some of the many aspartame toxicity symptoms reported include seizures, headaches, memory loss, tremors, convulsions, vision loss, nausea, dizziness, confusion, depression, irritability, anxiety attacks, personality changes, heart palpitations, chest pains, skin diseases, loss of blood sugar control, arthritic symptoms, weight gain (in some cases), fluid retention, and excessive thirst or urination. The phenylalanine in aspartame lowers the seizure threshold and depletes serotonin. Lowered serotonin triggers manic depression, panic attacks, anxiety, rage, mood swings, suicidal tendencies, etc. Other excitotoxins include fluoride, aluminum, iron overload, and organophosphate pesticides and herbicides. Aspartate, glutamate, and glutamine, among other amino acids, are excitatory in excess, or in absence of sufficient fuel in the brain. They are antagonistic to the functions of taurine, alanine, GABA, and glycine. Consequently, taurine does detoxify glutamates. Taurine (and magnesium) prevents glutamate excitotoxicity through regulation of calcium and mitochondrial energy metabolism. Taurine metabolizes into sulfates which the liver uses to detoxify phenols and amines, among other things. Glutathione is the other outlet for detoxification. Most people with autism are very low in glutathione which needs to be replenished as well as does taurine. Good quality undenatured whey protein powder is an excellent way to increase glutathione and overall immunity and health. Viruses can also be causative. There are over 20 viruses that have been shown to cause seizures in people, including many that are ubiquitous and known to have latent states, such as Epstein Barr, Herpes, influenza, sackie, measles, and mumps. Chronic latent viruses are also very common in autism, as they have an affinity for brain glial cells, and can be a main underlying cause of seizures. As was already mentioned, seizure activity often ceases or is alleviated by diet changes such as GFCF and the more extreme ketogenic diet. But you can also supplement MCTs and coconut oil. When you supplement with these oils, they are converted into ketones, even if you don’t change your diet. 4 teaspoons of MCT oil and 3 teaspoons of coconut oil three times a day with meals is an effective dosage. Additionally, all allergens should be identified and removed. Another frequent cause of seizures is parasites, usually worms, so a good parasite cleanse is an excellent idea. Seizure meds also deplete the body of many vital nutrients, which can actually lead to more seizures. It's an especially good idea to supplement vitamin E, 400 IU daily (mixed tocopherols, preferably soy free). > > >> >> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. >> >> Also, does changing the child's/teen's diet to gluten free help? >> >> >> [Non-text portions of this message have been removed] ------------------------------------ The Power Pumper makes physical therapy fun! Plus, funding sources are available to provide a free Power Pumper to anyone who needs it. ------------------------ http://www.powerpumper.com/friends/jrox.php?uid=bridalsh ------------------------ Autism_in_Girls_and_Women-subscribe ------------------------ Autism_in_Girls_and_Women-unsubscribe@...! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Just came from the doctor's where my daughter had a " panic attack/seizure' there. Was told that they will set up an MIR and EEG, but that the doctor feels that due to the emotional and physical abuse she experienced from her father (we are divorced, but she still sees him. The law is not always fair) it is psychological. I don't know what to think, but I just want her well. :-( Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 You're welcome, Sandi! It can be very daunting trying to get to the bottom of seizures and other issues, but well worth the effort when you finally do! :-) > , > > Thank you so much for this excellent information. It will be helpful in > monitoring a number of issues my daughter has had to keep an eye on. Now > I'll track some of these things with MSG, Aspartame, and Vitamin D in mind. > > Sandi (Allie's mom) in Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Great information. We of course did all the gluatmate avoidance and use magnesium supplements as well. Unfortunately, in the end our daughter needed some meds to completely eradicate the seizures. I presume you meant activated vitamin D raises the seizure threshold. I had not heard about the vitamin D connection to seizures. Do you have a reference? Whey would normally be avoided on a gf/cf diet. I looked into whey many years ago and found that the proteins in whey contain just as many opioid sequences as in gluten and casein...so unfortunately from the opioid perspective it is not a good idea. > >> > >> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > >> > >> Also, does changing the child's/teen's diet to gluten free help? > >> > >> > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 , Yes, I meant to say raises threshold. It was a controlled study that I read...I will see if I can find the reference for you. I read so many studies in my work. My daughter was able to tolerate whey when she experienced horrible reactions to gluten and casein. There was no opioid effect at all, and in fact I saw just the opposite. Good quality grass fed whey without a lot of the additives you find in most brands should not be a problem for most and has so many amazing benefits that it's hard to quantify. In fact, whey and selenium were probably the top two supplements that vastly improved my daughter's overall health. > > > Great information. We of course did all the gluatmate avoidance and use magnesium supplements as well. Unfortunately, in the end our daughter needed some meds to completely eradicate the seizures. I presume you meant activated vitamin D raises the seizure threshold. I had not heard about the vitamin D connection to seizures. Do you have a reference? > > Whey would normally be avoided on a gf/cf diet. I looked into whey many years ago and found that the proteins in whey contain just as many opioid sequences as in gluten and casein...so unfortunately from the opioid perspective it is not a good idea. > > > > >>>> >>>> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. >>>> >>>> Also, does changing the child's/teen's diet to gluten free help? >>>> >>>> >>>> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 I have never heard anyone caution against whey and many naturopaths recommend it. My information came from the Swiss Protein sequence database. I downloaded the whey protein sequences and looked for opioid subsets. I found many. We have avoided it. > >>>> > >>>> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > >>>> > >>>> Also, does changing the child's/teen's diet to gluten free help? > >>>> > >>>> > >>>> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Here is an abstract I had in my files: American Epilepsy Society 61st Annual Meeting: Abstract 3.337. November 30-December 4, 2007. For the study, investigators measured 25-hydroxy-vitamin D levels in 285 ambulatory patients with a seizure disorder \ 150 men and 135 women \ attending a single-center seizure clinic. Overall they found 44.5% (127) subjects had vitamin D deficiency, which was defined as serum levels of less than 20 ng/mL. When subjects were divided by sex, the study showed 45.3% (68) of men and 43.7% (59) of women had hypovitaminosis D. All vitamin D deficient patients, said Dr. Karakis, were treated with 1 capsule of 50,000 IU of vitamin D2 per week for 8 weeks, at which time levels were rechecked. " Patients who were compliant experienced improvement, " he said. > , > > Yes, I meant to say raises threshold. It was a controlled study that I read...I will see if I can find the reference for you. I read so many studies in my work. > > My daughter was able to tolerate whey when she experienced horrible reactions to gluten and casein. There was no opioid effect at all, and in fact I saw just the opposite. Good quality grass fed whey without a lot of the additives you find in most brands should not be a problem for most and has so many amazing benefits that it's hard to quantify. In fact, whey and selenium were probably the top two supplements that vastly improved my daughter's overall health. > > > > > >> >> >> Great information. We of course did all the gluatmate avoidance and use magnesium supplements as well. Unfortunately, in the end our daughter needed some meds to completely eradicate the seizures. I presume you meant activated vitamin D raises the seizure threshold. I had not heard about the vitamin D connection to seizures. Do you have a reference? >> >> Whey would normally be avoided on a gf/cf diet. I looked into whey many years ago and found that the proteins in whey contain just as many opioid sequences as in gluten and casein...so unfortunately from the opioid perspective it is not a good idea. >> >> >> >> >>>>> >>>>> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. >>>>> >>>>> Also, does changing the child's/teen's diet to gluten free help? >>>>> >>>>> >>>>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Is this a different form of Vitamin D than what we make with exposure to sunlight? Sent from my BlackBerry® smartphone, powered by CREDO Mobile. Re: Re: seizures Here is an abstract I had in my files: American Epilepsy Society 61st Annual Meeting: Abstract 3.337. November 30-December 4, 2007. For the study, investigators measured 25-hydroxy-vitamin D levels in 285 ambulatory patients with a seizure disorder \ 150 men and 135 women \ attending a single-center seizure clinic. Overall they found 44.5% (127) subjects had vitamin D deficiency, which was defined as serum levels of less than 20 ng/mL. When subjects were divided by sex, the study showed 45.3% (68) of men and 43.7% (59) of women had hypovitaminosis D. All vitamin D deficient patients, said Dr. Karakis, were treated with 1 capsule of 50,000 IU of vitamin D2 per week for 8 weeks, at which time levels were rechecked. " Patients who were compliant experienced improvement, " he said. > , > > Yes, I meant to say raises threshold. It was a controlled study that I read...I will see if I can find the reference for you. I read so many studies in my work. > > My daughter was able to tolerate whey when she experienced horrible reactions to gluten and casein. There was no opioid effect at all, and in fact I saw just the opposite. Good quality grass fed whey without a lot of the additives you find in most brands should not be a problem for most and has so many amazing benefits that it's hard to quantify. In fact, whey and selenium were probably the top two supplements that vastly improved my daughter's overall health. > > > > > >> >> >> Great information. We of course did all the gluatmate avoidance and use magnesium supplements as well. Unfortunately, in the end our daughter needed some meds to completely eradicate the seizures. I presume you meant activated vitamin D raises the seizure threshold. I had not heard about the vitamin D connection to seizures. Do you have a reference? >> >> Whey would normally be avoided on a gf/cf diet. I looked into whey many years ago and found that the proteins in whey contain just as many opioid sequences as in gluten and casein...so unfortunately from the opioid perspective it is not a good idea. >> >> >> >> >>>>> >>>>> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. >>>>> >>>>> Also, does changing the child's/teen's diet to gluten free help? >>>>> >>>>> >>>>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 No, in fact skin vitamin D is the best form, with incredible health benefits. When the angle of elevation is optimal, particularly in summer months, I make sure my daughter gets 10-15 minutes of exposure on her face arms, chest and back, and no sunscreen, of course. Other times I supplement D3. > Is this a different form of Vitamin D than what we make with exposure to sunlight? > > > Sent from my BlackBerry® smartphone, powered by CREDO Mobile. > > Re: Re: seizures > > Here is an abstract I had in my files: > > American Epilepsy Society 61st Annual Meeting: Abstract 3.337. November 30-December 4, 2007. > > For the study, investigators measured 25-hydroxy-vitamin D levels in 285 ambulatory patients with a seizure disorder Â\ 150 men and 135 women Â\ attending a single-center seizure clinic. > > Overall they found 44.5% (127) subjects had vitamin D deficiency, which was defined as serum levels of less than 20 ng/mL. When subjects were divided by sex, the study showed 45.3% (68) of men and 43.7% (59) of women had hypovitaminosis D. > > All vitamin D deficient patients, said Dr. Karakis, were treated with 1 capsule of 50,000 IU of vitamin D2 per week for 8 weeks, at which time levels were rechecked. " Patients who were compliant experienced improvement, " he said. > > > > > > > >> , >> >> Yes, I meant to say raises threshold. It was a controlled study that I read...I will see if I can find the reference for you. I read so many studies in my work. >> >> My daughter was able to tolerate whey when she experienced horrible reactions to gluten and casein. There was no opioid effect at all, and in fact I saw just the opposite. Good quality grass fed whey without a lot of the additives you find in most brands should not be a problem for most and has so many amazing benefits that it's hard to quantify. In fact, whey and selenium were probably the top two supplements that vastly improved my daughter's overall health. >> >> >> >> >> >>> >>> >>> Great information. We of course did all the gluatmate avoidance and use magnesium supplements as well. Unfortunately, in the end our daughter needed some meds to completely eradicate the seizures. I presume you meant activated vitamin D raises the seizure threshold. I had not heard about the vitamin D connection to seizures. Do you have a reference? >>> >>> Whey would normally be avoided on a gf/cf diet. I looked into whey many years ago and found that the proteins in whey contain just as many opioid sequences as in gluten and casein...so unfortunately from the opioid perspective it is not a good idea. >>> >>> >>> >>> >>>>>> >>>>>> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. >>>>>> >>>>>> Also, does changing the child's/teen's diet to gluten free help? >>>>>> >>>>>> >>>>>> >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 That's what I thought. And pretty much all of us get enough incidental sun exposure to make what we need. But that's probably Vitamin D1. They study said the gave D2 supplements. Sent from my BlackBerry® smartphone, powered by CREDO Mobile. Re: Re: seizures > > Here is an abstract I had in my files: > > American Epilepsy Society 61st Annual Meeting: Abstract 3.337. November 30-December 4, 2007. > > For the study, investigators measured 25-hydroxy-vitamin D levels in 285 ambulatory patients with a seizure disorder Â\ 150 men and 135 women Â\ attending a single-center seizure clinic. > > Overall they found 44.5% (127) subjects had vitamin D deficiency, which was defined as serum levels of less than 20 ng/mL. When subjects were divided by sex, the study showed 45.3% (68) of men and 43.7% (59) of women had hypovitaminosis D. > > All vitamin D deficient patients, said Dr. Karakis, were treated with 1 capsule of 50,000 IU of vitamin D2 per week for 8 weeks, at which time levels were rechecked. " Patients who were compliant experienced improvement, " he said. > > > > > > > >> , >> >> Yes, I meant to say raises threshold. It was a controlled study that I read...I will see if I can find the reference for you. I read so many studies in my work. >> >> My daughter was able to tolerate whey when she experienced horrible reactions to gluten and casein. There was no opioid effect at all, and in fact I saw just the opposite. Good quality grass fed whey without a lot of the additives you find in most brands should not be a problem for most and has so many amazing benefits that it's hard to quantify. In fact, whey and selenium were probably the top two supplements that vastly improved my daughter's overall health. >> >> >> >> >> >>> >>> >>> Great information. We of course did all the gluatmate avoidance and use magnesium supplements as well. Unfortunately, in the end our daughter needed some meds to completely eradicate the seizures. I presume you meant activated vitamin D raises the seizure threshold. I had not heard about the vitamin D connection to seizures. Do you have a reference? >>> >>> Whey would normally be avoided on a gf/cf diet. I looked into whey many years ago and found that the proteins in whey contain just as many opioid sequences as in gluten and casein...so unfortunately from the opioid perspective it is not a good idea. >>> >>> >>> >>> >>>>>> >>>>>> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. >>>>>> >>>>>> Also, does changing the child's/teen's diet to gluten free help? >>>>>> >>>>>> >>>>>> >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Which leads me to wonder, if they can get good results with crappy synthetic vitamin D2, which is not well absorbed at all, then imagine the results with skin vitamin D or natural D3 supplementation. One of the reasons why there is so much vitamin D deficiency is that most people do NOT get enough real sun exposure due to sun avoidance, toxic sunscreens that are ridiculously pushed on people, UV protective clothing, etc. > That's what I thought. And pretty much all of us get enough incidental sun exposure to make what we need. But that's probably Vitamin D1. They study said the gave D2 supplements. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 From the abstract and press release ( I have not read the paper yet) it appears they measured 25(OH)D (calcidiol) which is not the active form of vitamin D (1,25(OH)2). In a healthy person the enzyme 25-hydroxy vitamin D3 1-alpha hydroxylase converts the calcidiol to the active form (calcitriol). In persons who have a cell wall deficient bacterial infection, as in Sarcoidosis for example, the enzyme is inhibited by a bacterial metabolite in such a way that the active form cannot be reconverted back to the 25(OH) D form. The consequence is excessively high active vitamin D (1,25(OH)D ) and low 25 (OH) D. Measuring only the 25(OH) D form (the standard test) would miss the possible high active vitamin D. This understanding is the premise behind Dr. Trevor Marshall protocol for treating Sarcoidosis. We have measured both forms vitamin D and found extremely high active vitamin D and low 25(OH)D in our daughter. We do not supplement with vitamin D. Our whole family is photosensitive. I suspect that reports of people feeling better is sometimes due the steroidal activity of vitamin D. > >>>>> > >>>>> Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > >>>>> > >>>>> Also, does changing the child's/teen's diet to gluten free help? > >>>>> > >>>>> > >>>>> > >>> > >>> > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 , Yes, no doubt the " feeling better " is probably due to many complex biochemical factors. The science is rather lacking in that area, in my opinion. Here is another article I located in my files. I have read other supporting studies since, as well. European Journal of Pharmacology Volume 573, Issues 1-3, 14 November 2007, Pages 111-115 Cholecalciferol enhances the anticonvulsant effect of conventional antiepileptic drugs in the mouse model of maximal electroshock Kinga K. Borowicz, Marta Morawska, Kamila Furmanek-Karwowska, Jarogniew J. Luszczki, Stanislaw J. Czuczwar Department of Pathophysiology, Medical University, Lublin, Poland Department of Physiopathology, Institute of Agricultural Medicine, Lublin, Poland Received 16 April 2007; revised 20 June 2007; Accepted 4 July 2007. Available online 10 July 2007. Abstract The interactions between cholecalciferol, a precursor of the active form of Vitamin D3, and conventional antiepileptic drugs (valproate, carbamazepine, phenytoin, and phenobarbital) were studied in the maximal electroshock test in mice. Vitamin D3 applied i.p. at doses of 37.5 and 75 μg/kg, but not at 18.75 μg/kg, significantly raised the electroconvulsive threshold. Furthermore, cholecalciferol (at its highest subthreshold dose of 18.75 μg) potentiated the anticonvulsant activity of phenytoin and valproate. The action of carbamazepine and phenobarbital was also enhanced by Vitamin D3, but when it was given at the higher dose of 37.5 μg/kg. Cholecalciferol, antiepileptic drugs, and their combinations did not produce significant adverse effects evaluated in the chimney test (motor coordination) and passive–avoidance task (long-term memory). Cholecalciferol did not significantly increase the brain concentrations of conventional antiepileptics, indicating a pharmacodynamic nature of revealed interactions. Our findings show that cholecalciferol may play an anticonvulsant role in the brain and can influence the efficacy of antiepileptic drugs, at least in experimental conditions. > > > From the abstract and press release ( I have not read the paper yet) it appears they measured 25(OH)D (calcidiol) which is not the active form of vitamin D (1,25(OH)2). In a healthy person the enzyme 25-hydroxy vitamin D3 1-alpha hydroxylase converts the calcidiol to the active form (calcitriol). In persons who have a cell wall deficient bacterial infection, as in Sarcoidosis for example, the enzyme is inhibited by a bacterial metabolite in such a way that the active form cannot be reconverted back to the 25(OH) D form. The consequence is excessively high active vitamin D (1,25(OH)D ) and low 25 (OH) D. Measuring only the 25(OH) D form (the standard test) would miss the possible high active vitamin D. This understanding is the premise behind Dr. Trevor Marshall protocol for treating Sarcoidosis. We have measured both forms vitamin D and found extremely high active vitamin D and low 25(OH)D in our daughter. > > We do not supplement with vitamin D. Our whole family is photosensitive. > > I suspect that reports of people feeling better is sometimes due the steroidal activity of vitamin D. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2011 Report Share Posted September 16, 2011 Theresa, I've sent a reply to YOUR email address! There is a medical article attached. It is about the PCDH 19 gene! I've posted HERE about this before, if your daughter has a atypical seizure disorder this might help, a REASON. It is fairly new. My is one of the " cases " in the article. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 My daughter is 14 yrs old and started seizures at about 10 yrs of age. She takes a ton of seizure meds but is still uncontrolled (seizures). I found that taking beef out of her diet helped immensely. I don't know why - maybe it was stressful to digest?? Anyway, it helped. http://stores.ebay.com/Cammys-Clothing-Treasures Thx, Cammy > > Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > > Also, does changing the child's/teen's diet to gluten free help? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Wow, that is interesting. Will try taking beef from her diet and see what happens. Thanks for the suggestion. --------------------- My Etsy Shop: http://www.etsy.com/shop/maggiestreasure http://www.etsy.com/shop/magwirejewelry Re: seizures My daughter is 14 yrs old and started seizures at about 10 yrs of age. She takes a ton of seizure meds but is still uncontrolled (seizures). I found that taking beef out of her diet helped immensely. I don't know why - maybe it was stressful to digest?? Anyway, it helped. http://stores.ebay.com/Cammys-Clothing-Treasures Thx, Cammy > > Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > > Also, does changing the child's/teen's diet to gluten free help? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Autism lends itself very well to seizures. That " differently wired brain " they all tell us about can cause all sorts of unexpected functions. In the case of my daughter, I had originally thought her meltdowns had a seizure tone about them. She would have tonic, clonic, and post ictal phases to the worst of her's, and yet after chelation, this pattern seems to have stopped.  I have heard that magnesium suppliments has also played a role in preventing them, but you should check this out on-line.  Good luck to you,   ________________________________ To: Autism_in_Girls_and_Women Sent: Tuesday, September 20, 2011 1:30 PM Subject: Re: seizures  My daughter is 14 yrs old and started seizures at about 10 yrs of age. She takes a ton of seizure meds but is still uncontrolled (seizures). I found that taking beef out of her diet helped immensely. I don't know why - maybe it was stressful to digest?? Anyway, it helped. http://stores.ebay.com/Cammys-Clothing-Treasures Thx, Cammy > > Has anyone a child or teen who experiences seizures with autism spectrum disorder? My daughter has had them sporadically and now she is experiencing them more often. Her counselor suggested she get an EEG. > > Also, does changing the child's/teen's diet to gluten free help? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Seizures are very complex. In her case, perhaps there was a shortage of magnesium in her system that caused them. There is no single cure for seizures that is going to cure everyone's seizures.Angei To: Rife Sent: Friday, May 18, 2012 10:56 AM Subject: Re: WEBSITES FOR DIFFERENT MACHINES Rife and Lymes I know an eplileptic that is curing her Lyme and coinfections with a Doug Coil. It has not caused seizures. Actually, using magnesium oil daily, got rid of her seizures. <Here are some more contraindicators ...On anyone who wears a Pacemaker and or Defibrillator.5Hz or lower must not be used while driving a car. Could fall asleep.On anyone who has Phlebitis On anyone who has Thrombosis, especially 10Hz (dissolves blood clots)On anyone who has not had several weeks of good healing after surgery. On anyone who has suffered a stroke. On anyone who is pregnant. On anyone who suffers from Epilepsy and convulsions.On anyone who has a Psychotic disorder. On anyone with heart problems, especially 1 Hz> Bonita PoulinCanadian CoordinatorGLOBAL RECOGNITION CAMPAIGNMultiple Chemical Sensitivityand other Chemically Induced Illnesses, Diseases & Injuryaffecting civilians and military personnelwww.mcs-global.org www.mcsglobalawareness.com Quote Link to comment Share on other sites More sharing options...
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