Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 le - I have recently wondered if Jimmy's speech issue was a due to an on going epileptic issue (after watching the news reporter that had this sudden 'stroke' or 'epileptic seizure' on TV) as Jimmy was alarmingly like her speech pattern (on occasion, although we have seen less and less of it). Jim (my husband) his maternal grandmother had epilepsy -- so I had wondered if it was a genetic prediposition -- as I only think it's an issue with needing more of certain vitamins/minerals. My son Jimmy has never had 'seizure.' -- at least, one that I can point to and say 'yes, that is a seizure.' I found this site - that suggested that calcium, magnesium and zinc (balanced with potassium/sodium ) were all needed in excess to combat the epilesy - interestingly enough, those three minerals are also needed when you have a PST deficiency -- (which is part of the Feingold/salicyate/phenol issue. Which Jimmy benefited greatly from. Jimmy is gf/cf (only corn and soy are organic/sprouted and severely limited) he gets B12, a multi, calcium citrate, magnesium (Naturally calm), and zinc (zinc monomethionine) -- I also juice for him twice daily. He is also Low Oxalate diet, although when I do give him high oxalate things, I supplement with calcium to help offset the bad affects. He is also on Syntol as his probiotic for the time being, and I am thinking of trying cocokefir too. Here is the website (you might have already seen it.) http://www.drlwilson.com/articles/epilepsy.htm If for no other reason, it's interesting to read. laura > > Hello everyone, > My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her sleep. She is 4 yo and 8 months, does not speak much and has many autistic features like self stimulatory repetitive behavior speacially verbal ones, she repeats the same sentence thousand of times and movement ones, she can go up and down the stairway for 5 hours. Since the beginning the Drs had told us that these behaviors are due to the epilepsy but after these almost three years I am not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and with Vagus Nerv Stimulator, she still has these behaviors and sometimes I thing they are even worse. > Does any of you have experience with this? > We are trying now the treatments currently used for autism: biomendical and ABA. But we are just in the beginnig. > I appreciate any thought on the matter. > Thank you > le > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Same kind of boat here, not with the CSWS, we have documented epiliptiform activity, absence seizures and febrile seizures. Bad behavior. ADHD. 4.5 yr old, scheduled to start Kinder in the fall.Currently we are using diet, biomed and homeopathy. We wanted to try the homeopathy before doing antivirals. We may look at a modified Atkins for kids or going grain-free in the future if I can't reign in these " psychotic " behaviors. May start b12 injections in the coming weeks. My son is more of an enigma than my ASD dx'd daughter!!! We use magnesium taurate and other forms. B6 + magnesium is a common biomedical treatment for seizures. Hello everyone, My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her sleep. She is 4 yo and 8 months, does not speak much and has many autistic features like self stimulatory repetitive behavior speacially verbal ones, she repeats the same sentence thousand of times and movement ones, she can go up and down the stairway for 5 hours. Since the beginning the Drs had told us that these behaviors are due to the epilepsy but after these almost three years I am not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and with Vagus Nerv Stimulator, she still has these behaviors and sometimes I thing they are even worse. Does any of you have experience with this? We are trying now the treatments currently used for autism: biomendical and ABA. But we are just in the beginnig. I appreciate any thought on the matter. Thank you le -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hi le, If you haven't already, try to find a good dan who understands the immune system and read everything you can get your hands on. I would suggest to you reading McCarthy's book(s). In "Louder Than Words" she discusses he son's initial diagnosis as epilepsy but she pushed forward because she knew it was more than that. By treating the imuune system, her son's "epilepsy" and "autistic" behaviors disappeared. Check it out and keep us posted : ) -Tammy To: mb12 valtrex Sent: Thu, February 17, 2011 9:55:54 AMSubject: Epilepy or Autism? Hello everyone,My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her sleep. She is 4 yo and 8 months, does not speak much and has many autistic features like self stimulatory repetitive behavior speacially verbal ones, she repeats the same sentence thousand of times and movement ones, she can go up and down the stairway for 5 hours. Since the beginning the Drs had told us that these behaviors are due to the epilepsy but after these almost three years I am not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and with Vagus Nerv Stimulator, she still has these behaviors and sometimes I thing they are even worse. Does any of you have experience with this?We are trying now the treatments currently used for autism: biomendical and ABA. But we are just in the beginnig.I appreciate any thought on the matter.Thank youle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hello, Thank you for all replies. As we live in Austria is a little more difficult than in America to have things done. They really dont have the structure you guys luckly have in US. I had to travel Germany because here they have never heard of DAN or biomedical treatment for autism and they are basicly doing sensory integration. ABA is also difficult to find. Anyway, will be checked for autism in march, but we are going to start the biomedical treatment as soon as our delivery of suplements come from Germany. The DAN there prescribed: Ca- Mag Omega 3 mult vit. vit B6 L-Carnitin Nervoacid Probiotics Enzimes and something I have never heard of: Acetylcystein Methylcobalamin So far he didnt mention the MB12, which is so popular and seems so effective. I hope we are going in the right direction. Again, any thougs on these is really important. Thank you le > > Hi le, If you haven't already, try to find a good dan who understands the > immune system and read everything you can get your hands on. I would suggest to > you reading McCarthy's book(s). In " Louder Than Words " she discusses he > son's initial diagnosis as epilepsy but she pushed forward because she knew it > was more than that. By treating the imuune system, her son's " epilepsy " and > " autistic " behaviors disappeared. Check it out and keep us posted  : ) > > -Tammy > > > ________________________________ > > To: mb12 valtrex > Sent: Thu, February 17, 2011 9:55:54 AM > Subject: Epilepy or Autism? > >  > Hello everyone, > My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her > sleep. She is 4 yo and 8 months, does not speak much and has many autistic > features like self stimulatory repetitive behavior speacially verbal ones, she > repeats the same sentence thousand of times and movement ones, she can go up and > down the stairway for 5 hours. Since the beginning the Drs had told us that > these behaviors are due to the epilepsy but after these almost three years I am > not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and > with Vagus Nerv Stimulator, she still has these behaviors and sometimes I thing > they are even worse. > > Does any of you have experience with this? > We are trying now the treatments currently used for autism: biomendical and ABA. > But we are just in the beginnig. > I appreciate any thought on the matter. > Thank you > le > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Get michael goldberg new book the myth of autism explains connection between epilepsy and immune system maybe also join nids group > Hello, > > Thank you for all replies. > As we live in Austria is a little more difficult than in America to have > things done. They really dont have the structure you guys luckly have in US. > I had to travel Germany because here they have never heard of DAN or > biomedical treatment for autism and they are basicly doing sensory > integration. ABA is also difficult to find. > Anyway, will be checked for autism in march, but we are going to > start the biomedical treatment as soon as our delivery of suplements come > from Germany. The DAN there prescribed: > > Ca- Mag > Omega 3 > mult vit. > vit B6 > L-Carnitin > Nervoacid > Probiotics > Enzimes > > and something I have never heard of: > Acetylcystein > Methylcobalamin > > So far he didnt mention the MB12, which is so popular and seems so > effective. > I hope we are going in the right direction. > Again, any thougs on these is really important. > Thank you > le > > >> >> Hi le, If you haven't already, try to find a good dan who >> understands the >> immune system and read everything you can get your hands on. I would >> suggest to >> you reading McCarthy's book(s). In " Louder Than Words " she >> discusses he >> son's initial diagnosis as epilepsy but she pushed forward because she >> knew it >> was more than that. By treating the imuune system, her son's " epilepsy " >> and >> " autistic " behaviors disappeared. Check it out and keep us posted  : >> ) >> >> -Tammy >> >> >> ________________________________ >> >> To: mb12 valtrex >> Sent: Thu, February 17, 2011 9:55:54 AM >> Subject: Epilepy or Autism? >> >>  >> Hello everyone, >> My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of >> her >> sleep. She is 4 yo and 8 months, does not speak much and has many autistic >> >> features like self stimulatory repetitive behavior speacially verbal ones, >> she >> repeats the same sentence thousand of times and movement ones, she can go >> up and >> down the stairway for 5 hours. Since the beginning the Drs had told us >> that >> these behaviors are due to the epilepsy but after these almost three years >> I am >> not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet >> and >> with Vagus Nerv Stimulator, she still has these behaviors and sometimes I >> thing >> they are even worse. >> >> Does any of you have experience with this? >> We are trying now the treatments currently used for autism: biomendical >> and ABA. >> But we are just in the beginnig. >> I appreciate any thought on the matter. >> Thank you >> le >> > > > -- Cotter 4 Pollerton Manor Carlow 059 9134964 087 2637921 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Methylcobalamin Is mb12 From: le Sent: Friday, February 18, 2011 5:29 AM To: mb12 valtrex Subject: Re: Epilepy or Autism? Hello,Thank you for all replies.As we live in Austria is a little more difficult than in America to have things done. They really dont have the structure you guys luckly have in US. I had to travel Germany because here they have never heard of DAN or biomedical treatment for autism and they are basicly doing sensory integration. ABA is also difficult to find.Anyway, will be checked for autism in march, but we are going to start the biomedical treatment as soon as our delivery of suplements come from Germany. The DAN there prescribed:Ca- MagOmega 3mult vit.vit B6L-CarnitinNervoacidProbioticsEnzimesand something I have never heard of:AcetylcysteinMethylcobalaminSo far he didnt mention the MB12, which is so popular and seems so effective.I hope we are going in the right direction.Again, any thougs on these is really important.Thank youle>> Hi le, If you haven't already, try to find a good dan who understands the > immune system and read everything you can get your hands on. I would suggest to > you reading McCarthy's book(s). In "Louder Than Words" she discusses he > son's initial diagnosis as epilepsy but she pushed forward because she knew it > was more than that. By treating the imuune system, her son's "epilepsy" and > "autistic" behaviors disappeared. Check it out and keep us posted  : )> > -Tammy> > > ________________________________> > To: mb12 valtrex > Sent: Thu, February 17, 2011 9:55:54 AM> Subject: Epilepy or Autism?> >  > Hello everyone,> My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her > sleep. She is 4 yo and 8 months, does not speak much and has many autistic > features like self stimulatory repetitive behavior speacially verbal ones, she > repeats the same sentence thousand of times and movement ones, she can go up and > down the stairway for 5 hours. Since the beginning the Drs had told us that > these behaviors are due to the epilepsy but after these almost three years I am > not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and > with Vagus Nerv Stimulator, she still has these behaviors and sometimes I thing > they are even worse. > > Does any of you have experience with this?> We are trying now the treatments currently used for autism: biomendical and ABA. > But we are just in the beginnig.> I appreciate any thought on the matter.> Thank you> le> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 le, Methylcobalamin is B12 : ) To: mb12 valtrex Sent: Fri, February 18, 2011 5:29:45 AMSubject: Re: Epilepy or Autism? Hello,Thank you for all replies.As we live in Austria is a little more difficult than in America to have things done. They really dont have the structure you guys luckly have in US. I had to travel Germany because here they have never heard of DAN or biomedical treatment for autism and they are basicly doing sensory integration. ABA is also difficult to find.Anyway, will be checked for autism in march, but we are going to start the biomedical treatment as soon as our delivery of suplements come from Germany. The DAN there prescribed:Ca- MagOmega 3mult vit.vit B6L-CarnitinNervoacidProbioticsEnzimesand something I have never heard of:AcetylcysteinMethylcobalaminSo far he didnt mention the MB12, which is so popular and seems so effective.I hope we are going in the right direction.Again, any thougs on these is really important.Thank youle--- In mb12 valtrex , T Lynn wrote:>> Hi le, If you haven't already, try to find a good dan who understands the > immune system and read everything you can get your hands on. I would suggest to > you reading McCarthy's book(s). In "Louder Than Words" she discusses he > son's initial diagnosis as epilepsy but she pushed forward because she knew it > was more than that. By treating the imuune system, her son's "epilepsy" and > "autistic" behaviors disappeared. Check it out and keep us posted  : )> > -Tammy> > > ________________________________> > To: mb12 valtrex > Sent: Thu, February 17, 2011 9:55:54 AM> Subject: Epilepy or Autism?> >  > Hello everyone,> My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her > sleep. She is 4 yo and 8 months, does not speak much and has many autistic > features like self stimulatory repetitive behavior speacially verbal ones, she > repeats the same sentence thousand of times and movement ones, she can go up and > down the stairway for 5 hours. Since the beginning the Drs had told us that > these behaviors are due to the epilepsy but after these almost three years I am > not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and > with Vagus Nerv Stimulator, she still has these behaviors and sometimes I thing > they are even worse. > > Does any of you have experience with this?> We are trying now the treatments currently used for autism: biomendical and ABA. > But we are just in the beginnig.> I appreciate any thought on the matter.> Thank you> le> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 If someone could please help me I would greatly appreciate it! I have been trying to unsubscribe to this list for 3 days! I have already gone to the bottom of the page and clicked on 'Unsubscribe' 3 times with my request! I just wonder if someone knows the moderator of this group and could please help to remove me.Thank youLynn StevanovskiSent from my Verizon Wireless BlackBerrySender: mb12 valtrex Date: Fri, 18 Feb 2011 04:05:34 -0800 (PST)To: <mb12 valtrex >ReplyTo: mb12 valtrex Subject: Re: Re: Epilepy or Autism? le, Methylcobalamin is B12 : ) To: mb12 valtrex Sent: Fri, February 18, 2011 5:29:45 AMSubject: Re: Epilepy or Autism? Hello,Thank you for all replies.As we live in Austria is a little more difficult than in America to have things done. They really dont have the structure you guys luckly have in US. I had to travel Germany because here they have never heard of DAN or biomedical treatment for autism and they are basicly doing sensory integration. ABA is also difficult to find.Anyway, will be checked for autism in march, but we are going to start the biomedical treatment as soon as our delivery of suplements come from Germany. The DAN there prescribed:Ca- MagOmega 3mult vit.vit B6L-CarnitinNervoacidProbioticsEnzimesand something I have never heard of:AcetylcysteinMethylcobalaminSo far he didnt mention the MB12, which is so popular and seems so effective.I hope we are going in the right direction.Again, any thougs on these is really important.Thank youle---In mb12 valtrex , T Lynn wrote:>> Hi le, If you haven't already, try to find a good dan who understands the > immune system and read everything you can get your hands on. I would suggest to > you reading McCarthy's book(s). In "Louder Than Words" she discusses he > son's initial diagnosis as epilepsy but she pushed forward because she knew it > was more than that. By treating the imuune system, her son's "epilepsy" and > "autistic" behaviors disappeared. Check it out and keep us posted  : )> > -Tammy> > >________________________________> > To: mb12 valtrex > Sent: Thu, February 17, 2011 9:55:54 AM> Subject: Epilepy or Autism?> >  > Hello everyone,> My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her > sleep. She is 4 yo and 8 months, does not speak much and has many autistic > features like self stimulatory repetitive behavior speacially verbal ones, she > repeats the same sentence thousand of times and movement ones, she can go up and > down the stairway for 5 hours. Since the beginning the Drs had told us that > these behaviors are due to the epilepsy but after these almost three years I am > not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and > with Vagus Nerv Stimulator, she still has thesebehaviors and sometimes I thing > they are even worse. > > Does any of you have experience with this?> We are trying now the treatments currently used for autism: biomendical and ABA. > But we are just in the beginnig.> I appreciate any thought on the matter.> Thank you> le> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Try going to groups.yahoo.com and then sign in and go to " manage my groups. " If someone could please help me I would greatly appreciate it! I have been trying to unsubscribe to this list for 3 days! I have already gone to the bottom of the page and clicked on 'Unsubscribe' 3 times with my request! I just wonder if someone knows the moderator of this group and could please help to remove me. Thank youLynn StevanovskiSent from my Verizon Wireless BlackBerry Sender: mb12 valtrex Date: Fri, 18 Feb 2011 04:05:34 -0800 (PST)To: <mb12 valtrex >ReplyTo: mb12 valtrex Subject: Re: Re: Epilepy or Autism? le, Methylcobalamin is B12 : ) To: mb12 valtrex Sent: Fri, February 18, 2011 5:29:45 AMSubject: Re: Epilepy or Autism? Hello,Thank you for all replies.As we live in Austria is a little more difficult than in America to have things done. They really dont have the structure you guys luckly have in US. I had to travel Germany because here they have never heard of DAN or biomedical treatment for autism and they are basicly doing sensory integration. ABA is also difficult to find. Anyway, will be checked for autism in march, but we are going to start the biomedical treatment as soon as our delivery of suplements come from Germany. The DAN there prescribed:Ca- MagOmega 3mult vit. vit B6L-CarnitinNervoacidProbioticsEnzimesand something I have never heard of:AcetylcysteinMethylcobalaminSo far he didnt mention the MB12, which is so popular and seems so effective. I hope we are going in the right direction.Again, any thougs on these is really important.Thank youle--- In mb12 valtrex , T Lynn wrote:>> Hi le, If you haven't already, try to find a good dan who understands the > immune system and read everything you can get your hands on. I would suggest to > you reading McCarthy's book(s). In " Louder Than Words " she discusses he > son's initial diagnosis as epilepsy but she pushed forward because she knew it > was more than that. By treating the imuune system, her son's " epilepsy " and > " autistic " behaviors disappeared. Check it out and keep us posted  : )> > -Tammy> > >________________________________> > To: mb12 valtrex > Sent: Thu, February 17, 2011 9:55:54 AM> Subject: Epilepy or Autism?> >  > Hello everyone,> My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her > sleep. She is 4 yo and 8 months, does not speak much and has many autistic > features like self stimulatory repetitive behavior speacially verbal ones, she > repeats the same sentence thousand of times and movement ones, she can go up and > down the stairway for 5 hours. Since the beginning the Drs had told us that > these behaviors are due to the epilepsy but after these almost three years I am > not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and > with Vagus Nerv Stimulator, she still has these behaviors and sometimes I thing > they are even worse. > > Does any of you have experience with this?> We are trying now the treatments currently used for autism: biomendical and ABA. > But we are just in the beginnig. > I appreciate any thought on the matter.> Thank you> le> -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 diet stopped our stimming along with vit A From: le Sent: Thursday, February 17, 2011 9:55 AM To: mb12 valtrex Subject: Epilepy or Autism? Hello everyone,My daughter has CSWS, a dificult kind of epilepsy that takes circa 60% of her sleep. She is 4 yo and 8 months, does not speak much and has many autistic features like self stimulatory repetitive behavior speacially verbal ones, she repeats the same sentence thousand of times and movement ones, she can go up and down the stairway for 5 hours. Since the beginning the Drs had told us that these behaviors are due to the epilepsy but after these almost three years I am not so sure. Although the epilepsy got better with AED´s, Ketogenic Diet and with Vagus Nerv Stimulator, she still has these behaviors and sometimes I thing they are even worse. Does any of you have experience with this?We are trying now the treatments currently used for autism: biomendical and ABA. But we are just in the beginnig.I appreciate any thought on the matter.Thank youle Quote Link to comment Share on other sites More sharing options...
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