Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Wow !! That is SO encouraging! From what I've read in Dr. G's book, my son fits viral infection symptoms to a tee. I'm dying to get him started, but so much paper work and medical records from 2 states and about 10 doctors!!! Omg. My parent history for him is almost done. (5 pages, single spaced!) He's never been on antivirals. I think it's going to be huge. Thanks again! Sheryl Sent from my iPhone On Mar 9, 2011, at 9:52 AM, Robyn & Greg Coggins <rngcoggs@...> wrote: > Hi, Sheryl. > > I have three boys on Dr. G's protocol, two of whom had seizure disorders. My oldest son was successfully weaned off Zarontin about 18 months into the protocol. My middle son had a seizure disorder and another neurological condition called Cyclical Vomiting Syndrome. He would throw up for several days once a month preceded and followed by migraines. Four months into antiviral treatment, the Cyclical Vomiting stopped and the frequency of migraines decreased. It took us a couple of tries to wean him off anti-seizure meds, but he has been off them for about a year now with no recurrent seizures. > > HTH, > > Robyn > > > > From: Sheryl Saturnino <ssaturnino@...> > Subject: Re: HHV6 > > Date: Wednesday, March 9, 2011, 9:41 AM > > > > Hi, Jill, > > Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age > > 9, also has seizures. I was wondering how long you have been on the protocol > > and if your son's seizures have improved/gone away. Or did you have control of > > them with Lamictal? > > And if anyone else's children have had seizures and you are on the protocol, I'd > > love to have you weigh in, as well. > > I am about half way through Dr. G's work and still have to compile a lot of > > paperwork before I can submit my son's stuff for an appt. with Dr. G. > > Thanks for your help. > > Sheryl > > ________________________________ > > From: sjillboyer <sjillboyer@...> > > > > Sent: Wed, March 9, 2011 4:38:59 AM > > Subject: HHV6 > > I was wondering when your children (and yourselves) are getting your HHV6 levels > > checked, are they looking for both HHV6A and HHV6B? Are you also getting other > > HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures > > and I read a while back on the HHV website that lamictal fights against HHV6a > > but not HHV6B (or maybe I have that backwards). > > Thank you, > > Jill > > p.s. I may have asked this before but I have a short term memory. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 All three of my kids' overall health has improved dramatically. Now we're starting to see nice gains socially and academically. No more two steps forward and three back. Please keep us posted. Robyn > > From: Sheryl Saturnino <ssaturnino@...> > Subject: Re: HHV6 > > Date: Wednesday, March 9, 2011, 9:41 AM > > > > Hi, Jill, > > Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age > > 9, also has seizures. I was wondering how long you have been on the protocol > > and if your son's seizures have improved/gone away. Or did you have control of > > them with Lamictal? > > And if anyone else's children have had seizures and you are on the protocol, I'd > > love to have you weigh in, as well. > > I am about half way through Dr. G's work and still have to compile a lot of > > paperwork before I can submit my son's stuff for an appt. with Dr. G. > > Thanks for your help. > > Sheryl > > ________________________________ > > From: sjillboyer <sjillboyer@...> > > > > Sent: Wed, March 9, 2011 4:38:59 AM > > Subject: HHV6 > > I was wondering when your children (and yourselves) are getting your HHV6 levels > > checked, are they looking for both HHV6A and HHV6B? Are you also getting other > > HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures > > and I read a while back on the HHV website that lamictal fights against HHV6a > > but not HHV6B (or maybe I have that backwards). > > Thank you, > > Jill > > p.s. I may have asked this Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Tricia et all, I know you'll be relieved when you meet with Dr. Goldberg. We had our first appointment last week. Today was our son's first day starting valtrex. I am hoping and praying for all our kids! Our son will be 4 years old the end of May and is nonverbal. We traveled from Pennsylvania to see him. If anyone out there is wondering about seeing Dr. Goldberg---I can tell you after seeing a very popular DAN! doctor--- Dr. Godlberg was a breathe of fresh air. He took the time to discuss, listen, and review EVERYTHING! He believes in our children and their parents. He is passionate and from our first appointment he seems very methodical. I hope this really helps our son, because I want to be able to help other families. This truly is a journey--We are all in it together. I'll keep you posted! Very Best, Margaret ________________________________ From: " westbrook66@... " <westbrook66@...> Sent: Thu, March 10, 2011 9:27:56 AM Subject: Re: HHV6 Robyn, Thank you for your words of hope for the rest of us! My daughter has seizures...I found the connection of HHV6 and seizures 2 years ago...we tested her and found out that she had had it. We have been trying to find a way to correct things ever since and finally made an appt. to see Dr. G in early May (had to delay due to scheduling Spect Scan). We are so ready for her to be free of the migraines that she gets from her Lamictal. It breaks my heart every time she gets a headache...(pretty often) and it is always after receiving her meds. I sure hope to have a seizure free, med free child one day...that is our goal. Thanks again, Tricia > > > > > > From: Sheryl Saturnino <ssaturnino@...> > > > Subject: Re: HHV6 > > > > > > Date: Wednesday, March 9, 2011, 9:41 AM > > > > > > > > > > > > Hi, Jill, > > > > > > Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age > > > > > > > 9, also has seizures. I was wondering how long you have been on the protocol > > > > > > and if your son's seizures have improved/gone away. Or did you have control >of > > > > > > > them with Lamictal? > > > > > > And if anyone else's children have had seizures and you are on the protocol, >I'd > > > > > > > love to have you weigh in, as well. > > > > > > I am about half way through Dr. G's work and still have to compile a lot of > > > > > > paperwork before I can submit my son's stuff for an appt. with Dr. G. > > > > > > Thanks for your help. > > > > > > Sheryl > > > > > > ________________________________ > > > > > > From: sjillboyer <sjillboyer@...> > > > > > > > > > > > > Sent: Wed, March 9, 2011 4:38:59 AM > > > > > > Subject: HHV6 > > > > > > I was wondering when your children (and yourselves) are getting your HHV6 >levels > > > > > > > checked, are they looking for both HHV6A and HHV6B? Are you also getting >other > > > > > > > HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures > > > > > > > and I read a while back on the HHV website that lamictal fights against HHV6a > > > > > > > but not HHV6B (or maybe I have that backwards). > > > > > > Thank you, > > > > > > Jill > > > > > > p.s. I may have asked this > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Jill,  Dr. R has a facility in New York as well and it seems that one helps anyone who needs it. I haven't looked that far into it but the website is http://www.nnyautismcenter.com. There has to be something someone can do to help you and your kids.  Betsy From: sjillboyer <sjillboyer@...> Subject: Re: HHV6 Date: Thursday, March 10, 2011, 12:16 PM  Hi Sheryl, My children are not on the protocol which is why they are still sick and my oldest still has a severe seizure disorder. I have been following this list for a long time now but yet to see Dr. G or Dr. R. I am a single mother with only medicaid for my kiddos. Their father resides overseas in France so I do not have health insurance through him either. I have an aunt with Fibromylagia and ME/CFS and my children's paternal aunt has had ME/CFS since 1998 (same year my oldest was born). I also had an aunt pass away from MS several years ago (she was married to uncle so not genetically related) and my ex's cousin died from MS the same year. I am hoping to get enough reliable providers to help so that I can go back to work full time so that I can get health insurance and get with the program. There are other parents here that have children with seizures and they are now seizure free with this protocol. There is so much literature out there that shows HHV causes seizures. All the best, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 That is what Dr. Goldberg told us. We did not see anything different behaviorally once the titers were up. We have never been able to tell much from the antiviral. Food infractions give us a physical and behavioral change more than anything else. Martha On Tue, Mar 8, 2011 at 12:52 AM, xiao xu <xh16882003@...> wrote: > > > Hi Martha, > > Thanks for your sharing. So, did you mean it is positive that the antiviral > brought the HHV6 out of hiding? > > What happened to your child after his HHV6 titers went to above? Did he > become better or worse? Would you please share more detail? > > Much appreciated, > > Xiao > > > > > > > > I want to share, my girl finally got HHV6 1:10. > > > She was dealing with this for all her life. > > > Once i thought she would always live with this. > > > So, once again Dr. G was right. it is a matter of time and patience and > > follow all the recomendations as strictly as possible. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 I concur. Our DAN doctor just threw supplements at our son and only tested him for metals. I like Dr Gs methodical approach. He is nit afraid to eleminate an RX if it's not working and he always asks us to set benchmarks for our son. Sent from my iPhone On Mar 10, 2011, at 10:18 AM, Margaret Neville <margaret.neville@...> wrote: > Tricia et all, > > I know you'll be relieved when you meet with Dr. Goldberg. We had our first > appointment last week. Today was our son's first day starting valtrex. I am > hoping and praying for all our kids! Our son will be 4 years old the end of > May and is nonverbal. We traveled from Pennsylvania to see him. > > If anyone out there is wondering about seeing Dr. Goldberg---I can tell you > after seeing a very popular DAN! doctor--- Dr. Godlberg was a breathe of fresh > air. He took the time to discuss, listen, and review EVERYTHING! He believes > in our children and their parents. He is passionate and from our first > appointment he seems very methodical. I hope this really helps our son, > because I want to be able to help other families. This truly is a journey--We > are all in it together. > > I'll keep you posted! > > Very Best, > > Margaret > > ________________________________ > From: " westbrook66@... " <westbrook66@...> > > Sent: Thu, March 10, 2011 9:27:56 AM > Subject: Re: HHV6 > > Robyn, > > Thank you for your words of hope for the rest of us! My daughter has > seizures...I found the connection of HHV6 and seizures 2 years ago...we tested > her and found out that she had had it. We have been trying to find a way to > correct things ever since and finally made an appt. to see Dr. G in early May > (had to delay due to scheduling Spect Scan). We are so ready for her to be free > of the migraines that she gets from her Lamictal. It breaks my heart every time > she gets a headache...(pretty often) and it is always after receiving her meds. > I sure hope to have a seizure free, med free child one day...that is our goal. > Thanks again, Tricia > > > > > > > > > > > > From: Sheryl Saturnino <ssaturnino@...> > > > > > Subject: Re: HHV6 > > > > > > > > > > Date: Wednesday, March 9, 2011, 9:41 AM > > > > > > > > > > > > > > > > > > > > Hi, Jill, > > > > > > > > > > Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age > > > > > > > > > > > > 9, also has seizures. I was wondering how long you have been on the protocol > > > > > > > > > > > and if your son's seizures have improved/gone away. Or did you have control > >of > > > > > > > > > > > > them with Lamictal? > > > > > > > > > > And if anyone else's children have had seizures and you are on the protocol, > >I'd > > > > > > > > > > > > love to have you weigh in, as well. > > > > > > > > > > I am about half way through Dr. G's work and still have to compile a lot of > > > > > > > > > > paperwork before I can submit my son's stuff for an appt. with Dr. G. > > > > > > > > > > Thanks for your help. > > > > > > > > > > Sheryl > > > > > > > > > > ________________________________ > > > > > > > > > > From: sjillboyer <sjillboyer@...> > > > > > > > > > > > > > > > > > > > > Sent: Wed, March 9, 2011 4:38:59 AM > > > > > > > > > > Subject: HHV6 > > > > > > > > > > I was wondering when your children (and yourselves) are getting your HHV6 > >levels > > > > > > > > > > > > checked, are they looking for both HHV6A and HHV6B? Are you also getting > >other > > > > > > > > > > > > HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures > > > > > > > > > > > > and I read a while back on the HHV website that lamictal fights against HHV6a > > > > > > > > > > > > but not HHV6B (or maybe I have that backwards). > > > > > > > > > > Thank you, > > > > > > > > > > Jill > > > > > > > > > > p.s. I may have asked this > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.