Guest guest Posted December 17, 2010 Report Share Posted December 17, 2010 Is there any doctor in Europe. And advise will be appreciated. Thanks, sema From: ssaturnino@... Date: Fri, 17 Dec 2010 07:42:51 -0800 Subject: Re: My daughter...considering starting ... Dear Tricia The path you have been on sounds almost exactly like the road we have been on, except my son is 9. I am also considering after being on this board for about a year. Sent from my iPhone On Dec 17, 2010, at 7:34 AM, " westbrook66@... " <westbrook66@...> wrote: I have been a member of this board for almost a year...educating myself about the protocol and reading all of the great information. I also have a friend whose son was on the protocol for 3 years (she recently stopped), but I also gained great information from her as well. My daughter is almost 8...verbal (only when she wants to be...not super conversational), has seizures (has been on Lamictal for 2.5 years..not diagnosed until age 5), has been tested for autism twice...(PDDNOS possible...very few traits of autism)...I think the problem has always been related more to her epilepsy than anything else. We followed the DAN protocol...mainly supplements, attempted chelation for 6 months, sequential homeopathy for 3 years. I have studied the whole HHV6 connection to inflammation...she has a positive test for this...low titers, but I have been reading that the numbers don't increase until you are on an antiviral for a long period of time. We attempted Valtrex a few years ago...and I freaked out at the changes in her and stopped (which I now realize is a good sign that she actually needed it). We are also in the process of having her tested for mitochondrial disease... I am now trying to figure out what step to take next. We have spent a small fortune (just like everyone else out there) and I am now slowing down the homeopathy to look into other options. I still think that Valtrex or Immunovir (HHV6 Foundation recommended this one for her) would be a good choice for her...(although I think if Valtrex...we should probably wait until a break in school). I just thought that I would mention as many things regarding her situation to see if anyone thinks that is the right step now. She is still very developmentally delayed....was at an ABA school for 3 years and it didn't help...she does more for me at home than she does there (she can read and count). She is very much into music...(wonder if she is actually a music savant or if this is what she did to cope with her seizures for years before diagnosis...positive that she has had them since her vaccines as a baby.) Thank you for your time...and any advice or recommendations are GREATLY appreciated. Sincerely, Tricia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2010 Report Share Posted December 17, 2010 From: semaediz@... nids Subject: RE: doctor in Europe Date: Fri, 17 Dec 2010 17:54:15 +0200 Is there any doctor in Europe. And advise will be appreciated. Thanks, sema From: ssaturnino@... Date: Fri, 17 Dec 2010 07:42:51 -0800 Subject: Re: My daughter...considering starting ... Dear Tricia The path you have been on sounds almost exactly like the road we have been on, except my son is 9. I am also considering after being on this board for about a year. Sent from my iPhone On Dec 17, 2010, at 7:34 AM, " westbrook66@... " <westbrook66@...> wrote: I have been a member of this board for almost a year...educating myself about the protocol and reading all of the great information. I also have a friend whose son was on the protocol for 3 years (she recently stopped), but I also gained great information from her as well. My daughter is almost 8...verbal (only when she wants to be...not super conversational), has seizures (has been on Lamictal for 2.5 years..not diagnosed until age 5), has been tested for autism twice...(PDDNOS possible...very few traits of autism)...I think the problem has always been related more to her epilepsy than anything else. We followed the DAN protocol...mainly supplements, attempted chelation for 6 months, sequential homeopathy for 3 years. I have studied the whole HHV6 connection to inflammation...she has a positive test for this...low titers, but I have been reading that the numbers don't increase until you are on an antiviral for a long period of time. We attempted Valtrex a few years ago...and I freaked out at the changes in her and stopped (which I now realize is a good sign that she actually needed it). We are also in the process of having her tested for mitochondrial disease... I am now trying to figure out what step to take next. We have spent a small fortune (just like everyone else out there) and I am now slowing down the homeopathy to look into other options. I still think that Valtrex or Immunovir (HHV6 Foundation recommended this one for her) would be a good choice for her...(although I think if Valtrex...we should probably wait until a break in school). I just thought that I would mention as many things regarding her situation to see if anyone thinks that is the right step now. She is still very developmentally delayed....was at an ABA school for 3 years and it didn't help...she does more for me at home than she does there (she can read and count). She is very much into music...(wonder if she is actually a music savant or if this is what she did to cope with her seizures for years before diagnosis...positive that she has had them since her vaccines as a baby.) Thank you for your time...and any advice or recommendations are GREATLY appreciated. Sincerely, Tricia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2010 Report Share Posted December 19, 2010 Hi, We are in a similar situation as you. Our daughter 10,and is epileptic after meningitis post MMR vaccine.She is also very developmentally delayed. We are still following the posts on this protocol and have yet to start. We have tried homoeopathy as well, very slow and helps specific minor issues well, like strep and colds etc. We are from India and want to do the . Any suggestions would help us greatly. Thanks Kamal On Fri, Dec 17, 2010 at 9:24 PM, sema canbuldu <semaediz@...>wrote: > > > > Is there any doctor in Europe. > And advise will be appreciated. > > Thanks, > sema > > <%40> > From: ssaturnino@... <ssaturnino%40> > Date: Fri, 17 Dec 2010 07:42:51 -0800 > Subject: Re: My daughter...considering starting ... > > Dear Tricia > The path you have been on sounds almost exactly like the road we have been > on, except my son is 9. I am also considering after being on this board > for about a year. > > Sent from my iPhone > > On Dec 17, 2010, at 7:34 AM, " westbrook66@...<westbrook66%40bellsouth.net> " > <westbrook66@... <westbrook66%40bellsouth.net>> wrote: > > I have been a member of this board for almost a year...educating myself > about the protocol and reading all of the great information. I also > have a friend whose son was on the protocol for 3 years (she recently > stopped), but I also gained great information from her as well. > > My daughter is almost 8...verbal (only when she wants to be...not super > conversational), has seizures (has been on Lamictal for 2.5 years..not > diagnosed until age 5), has been tested for autism twice...(PDDNOS > possible...very few traits of autism)...I think the problem has always been > related more to her epilepsy than anything else. We followed the DAN > protocol...mainly supplements, attempted chelation for 6 months, sequential > homeopathy for 3 years. I have studied the whole HHV6 connection to > inflammation...she has a positive test for this...low titers, but I have > been reading that the numbers don't increase until you are on an antiviral > for a long period of time. We attempted Valtrex a few years ago...and I > freaked out at the changes in her and stopped (which I now realize is a good > sign that she actually needed it). We are also in the process of having her > tested for mitochondrial disease... > > I am now trying to figure out what step to take next. We have spent a small > fortune (just like everyone else out there) and I am now slowing down the > homeopathy to look into other options. I still think that Valtrex or > Immunovir (HHV6 Foundation recommended this one for her) would be a good > choice for her...(although I think if Valtrex...we should probably wait > until a break in school). I just thought that I would mention as many things > regarding her situation to see if anyone thinks that is the right step > now. She is still very developmentally delayed....was at an ABA school for 3 > years and it didn't help...she does more for me at home than she does there > (she can read and count). She is very much into music...(wonder if she is > actually a music savant or if this is what she did to cope with her seizures > for years before diagnosis...positive that she has had them since her > vaccines as a baby.) > > Thank you for your time...and any advice or recommendations are GREATLY > appreciated. Sincerely, Tricia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Breakspear Hospital London. They use antivirals, antifungals and other things. Email me at autismclinic2@... and I'll give you some names of physicians there. E. on Re: My daughter...considering starting ... Dear Tricia The path you have been on sounds almost exactly like the road we have been on, except my son is 9. I am also considering after being on this board for about a year. Sent from my iPhone On Dec 17, 2010, at 7:34 AM, " westbrook66@... " <westbrook66@...> wrote: I have been a member of this board for almost a year...educating myself about the protocol and reading all of the great information. I also have a friend whose son was on the protocol for 3 years (she recently stopped), but I also gained great information from her as well. My daughter is almost 8...verbal (only when she wants to be...not super conversational), has seizures (has been on Lamictal for 2.5 years..not diagnosed until age 5), has been tested for autism twice...(PDDNOS possible...very few traits of autism)...I think the problem has always been related more to her epilepsy than anything else. We followed the DAN protocol...mainly supplements, attempted chelation for 6 months, sequential homeopathy for 3 years. I have studied the whole HHV6 connection to inflammation...she has a positive test for this...low titers, but I have been reading that the numbers don't increase until you are on an antiviral for a long period of time. We attempted Valtrex a few years ago...and I freaked out at the changes in her and stopped (which I now realize is a good sign that she actually needed it). We are also in the process of having her tested for mitochondrial disease... I am now trying to figure out what step to take next. We have spent a small fortune (just like everyone else out there) and I am now slowing down the homeopathy to look into other options. I still think that Valtrex or Immunovir (HHV6 Foundation recommended this one for her) would be a good choice for her...(although I think if Valtrex...we should probably wait until a break in school). I just thought that I would mention as many things regarding her situation to see if anyone thinks that is the right step now. She is still very developmentally delayed....was at an ABA school for 3 years and it didn't help...she does more for me at home than she does there (she can read and count). She is very much into music...(wonder if she is actually a music savant or if this is what she did to cope with her seizures for years before diagnosis...positive that she has had them since her vaccines as a baby.) Thank you for your time...and any advice or recommendations are GREATLY appreciated. Sincerely, Tricia Quote Link to comment Share on other sites More sharing options...
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