Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Dr.G put our son on an anti viral because his bloodwork indicated that he had a viral infection, his HHV6 titre came back at 1/165, the normal range is 1/20, everything else in his bloodwork was just a little " off " . Before we had even heard of various doctors had done bloodwork on our son and told us that he had a " little virus " (nothing to worry about)based on his bloodwork. So far (7 weeks) and our son has responded positively to the protocol. Antivirals > How is it that Dr. Goldberg decided to put your kids on antivirals? > What is the test or combination of tests that guided his treatment? > Thanks, Terri waiting to see Dr. Goldberg > > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 My son's HHV6 titre (IgG)back 1:1280 when normal is <1:80 I'm curious...does a higher readng like that mean that he'll be more likely to respond to an antiviral medication? This means Dr. G will probably start him on and antiviral, correct? Thanks, > Dr.G put our son on an anti viral because his bloodwork indicated that he > had a viral infection, his HHV6 titre came back at 1/165, the normal range > is 1/20, everything else in his bloodwork was just a little " off " . Before we > had even heard of various doctors had done bloodwork on our son and > told us that he had a " little virus " (nothing to worry about)based on his > bloodwork. So far (7 weeks) and our son has responded positively to the > protocol. > Antivirals > > > > How is it that Dr. Goldberg decided to put your kids on antivirals? > > What is the test or combination of tests that guided his treatment? > > Thanks, Terri waiting to see Dr. Goldberg > > > > > > > > Responsibility for the content of this message lies strictly with > > the original author, and is not necessarily endorsed by or the > > opinion of the Research Institute. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 250mg of Valtrex 3 tid Antivirals > > > > How is it that Dr. Goldberg decided to put your kids on antivirals? > > What is the test or combination of tests that guided his treatment? > > Thanks, Terri waiting to see Dr. Goldberg > > > > > > > > Responsibility for the content of this message lies strictly with > > the original author, and is not necessarily endorsed by or the > > opinion of the Research Institute. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 I don't know if it means he will be more likely to respond due to the high response. From what I understand the HHV6 titre alone does not mean that a child has a virus, it only means that they have been exposed to the virus. It's some of the other blood tests in the proposed work up that show if the child harboring a virus. Sometimes nothing really looks unusual but there may be a pattern within the normal range that Dr. G looks for that indicates that there is a problem. If that pattern shows up in you son then Dr.G will most likely put your son on an antiviral. Antivirals > > > > > > > How is it that Dr. Goldberg decided to put your kids on > antivirals? > > > What is the test or combination of tests that guided his > treatment? > > > Thanks, Terri waiting to see Dr. Goldberg > > > > > > > > > > > > Responsibility for the content of this message lies strictly with > > > the original author, and is not necessarily endorsed by or the > > > opinion of the Research Institute. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 What dosage of anti viral is he on? Doug McCreary wrote: > Â Dr.G put our son on an anti viral because his bloodwork indicated > that he > had a viral infection, his HHV6 titre came back at 1/165, the normal > range > is 1/20, everything else in his bloodwork was just a little " off " . > Before we > had even heard of various doctors had done bloodwork on our son > and > told us that he had a " little virus " (nothing to worry about)based on > his > bloodwork. So far (7 weeks) and our son has responded positively to > the > protocol. > Antivirals > Â > > > How is it that Dr. Goldberg decided to put your kids on antivirals? > > What is the test or combination of tests that guided his treatment? > > Thanks, Terri waiting to see Dr. Goldberg > > > > > > > > Responsibility for the content of this message lies strictly with > > the original author, and is not necessarily endorsed by or the > > opinion of the Research Institute. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Caroline My son has severe low muscle tone can you tell me what DR G did to help increase his strength? Thank you Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Terri, For our son it was a combination of... 1)the fact that he has low muscle tone (hypotonia), which Dr. Goldberg says is a possible indicator of a virus. 2) His white blood cell count kept coming back consistently low in his blood work (and lo and behold, the first round of blood work we did after starting the Valtrex, his white blood cell count had come up a bit... we're interested to see what it looks like next month). 3) By the way, we did not find ANY viruses in the initial blood work up. We did not really see any dramatic outward changes after starting Valtrex, except that our son has continued the gradual improvement we have seen since starting with Dr. G (and implementing the " Do's and Don'ts of Diet for 6 months before we made it to LA). I say gradual, but I want to add that this is definite improvement... we do not have the same child we had 1.5 years ago. The change is unbelievable. I feel that he is about 75% recovered. We owe all of this to Dr. Goldberg. Caroline >On 7/16/02 2:44 PM, " tlschuldt2001 " <tlschuldt2001@...> wrote: > How is it that Dr. Goldberg decided to put your kids on antivirals? > What is the test or combination of tests that guided his treatment? > Thanks, Terri waiting to see Dr. Goldberg > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Hi. I am just curious if you have been doing any behavioural therapies I.e. speech, ABA, Floor Time over the past year and a half? Or is it ONLY biomedical interventions since you started with Dr. Goldberg. We are just about to get started with Dr. G. and I am afraid to stop anything that we are doing now. I appreciate any input from the seasoned patients. Lori Re: Antivirals Terri, For our son it was a combination of... 1)the fact that he has low muscle tone (hypotonia), which Dr. Goldberg says is a possible indicator of a virus. 2) His white blood cell count kept coming back consistently low in his blood work (and lo and behold, the first round of blood work we did after starting the Valtrex, his white blood cell count had come up a bit... we're interested to see what it looks like next month). 3) By the way, we did not find ANY viruses in the initial blood work up. We did not really see any dramatic outward changes after starting Valtrex, except that our son has continued the gradual improvement we have seen since starting with Dr. G (and implementing the " Do's and Don'ts of Diet for 6 months before we made it to LA). I say gradual, but I want to add that this is definite improvement... we do not have the same child we had 1.5 years ago. The change is unbelievable. I feel that he is about 75% recovered. We owe all of this to Dr. Goldberg. Caroline >On 7/16/02 2:44 PM, " tlschuldt2001 " <tlschuldt2001@...> wrote: > How is it that Dr. Goldberg decided to put your kids on antivirals? > What is the test or combination of tests that guided his treatment? > Thanks, Terri waiting to see Dr. Goldberg > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Lori, I guess I should begin by saying that our son is PDD/NOS, so we do not have as far to go to recover as someone whose child is more severely affected. No, we have not done speech, floor time, or ABA. He does attend a " social skills " group once a week (he likes it but at an hour and fifteen minutes a week I don't think it accomplishes much). He also has physical therapy twice a month (his therapist then tells us what to work on at home for the rest of the month). His best therapy has been that he is " immersed " socially because he is one of four children, all different ages, who want to play with him ALL of the time. He also had a great teacher last year who worked with him and did everything she could to help him succeed. Really, we have not had anything different in the past year except for the social skills group and his first grade teacher being wonderful. I believe that his improvement is due to the fact that (thanks to Dr. Goldberg) his brain is now... 1) communicating with his body better 2) working better in areas that it did not function well before The main change seems to be that he just mentally " gets it " now when he didn't before. We have LOST the screaming tantrums, most of the obsessive behaviors, most of the hand flapping, the inflexibility, the inability to follow directions with more than one step... I could go on and on. That's the beauty of getting the child's body healthy and functioning right... they just start to progress and it is so exciting. Before you stop anything, check with Dr. Goldberg's office. He believes in helping a child progress in ways that complement the treatment. For instance, he suggested that we try to figure out where our son might need a boost academically by using computer learning games (didn't recommend any specific ones) to watch his skills, then working on the skills that were lower. Even when these kids' " fog " starts to lift, they still need to learn the skills they have missed in order to catch up. Best of luck to you... I hope next year you will be saying " WOW " like we are now! Caroline >On 7/19/02 1:47 PM, " Lori " <LB@...> wrote: > Hi. I am just curious if you have been doing any behavioural therapies I.e. > speech, ABA, Floor Time over the past year and a half? Or is it ONLY > biomedical interventions since you started with Dr. Goldberg. We are just > about to get started with Dr. G. and I am afraid to stop anything that we are > doing now. > > I appreciate any input from the seasoned patients. > > > Lori Re: Antivirals > > >> Terri, >> >> For our son it was a combination of... >> >> 1)the fact that he has low muscle tone (hypotonia), which Dr. Goldberg says >> is a possible indicator of a virus. >> >> 2) His white blood cell count kept coming back consistently low in his blood >> work (and lo and behold, the first round of blood work we did after starting >> the Valtrex, his white blood cell count had come up a bit... we're interested >> to see what it looks like next month). >> >> 3) By the way, we did not find ANY viruses in the initial blood work up. >> >> We did not really see any dramatic outward changes after starting Valtrex, >> except that our son has continued the gradual improvement we have seen since >> starting with Dr. G (and implementing the " Do's and Don'ts of Diet for 6 >> months before we made it to LA). I say gradual, but I want to add that this >> is definite improvement... we do not have the same child we had 1.5 years >> ago. The change is unbelievable. I feel that he is about 75% recovered. We >> owe all of this to Dr. Goldberg. >> >> Caroline >>> On 7/16/02 2:44 PM, " tlschuldt2001 " <tlschuldt2001@...> wrote: >>> >>> How is it that Dr. Goldberg decided to put your kids on antivirals? What is >>> the test or combination of tests that guided his treatment? Thanks, Terri >>> waiting to see Dr. Goldberg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Thank you so much Caroline. I really appreciate you taking the time to answer my question so directly. My son, who is 3.5 is also PDD-NOS, apparently. He has very few behavioural problems (yikes! He IS 3, so that might come back to bite me!!??!!), or stims, is above average in fine motor, and in the 98% cognitively for is age...His only " problem " the way I see it is delayed expressive communication, his receptive language is 50% for his age. We are doing Floor Time and Speech, so of course I am thrilled that you are confident that so much of your sons progress is biomedical and not behavioural therapies. We are making progress, but I am more confident than ever that the real hurdle for us will be to get his brain communicating better with his body as you so beautifully put it. Thank you again for you encouragement and your openness. Sincerely, Lori Re: Antivirals > > >> Terri, >> >> For our son it was a combination of... >> >> 1)the fact that he has low muscle tone (hypotonia), which Dr. Goldberg says >> is a possible indicator of a virus. >> >> 2) His white blood cell count kept coming back consistently low in his blood >> work (and lo and behold, the first round of blood work we did after starting >> the Valtrex, his white blood cell count had come up a bit... we're interested >> to see what it looks like next month). >> >> 3) By the way, we did not find ANY viruses in the initial blood work up. >> >> We did not really see any dramatic outward changes after starting Valtrex, >> except that our son has continued the gradual improvement we have seen since >> starting with Dr. G (and implementing the " Do's and Don'ts of Diet for 6 >> months before we made it to LA). I say gradual, but I want to add that this >> is definite improvement... we do not have the same child we had 1.5 years >> ago. The change is unbelievable. I feel that he is about 75% recovered. We >> owe all of this to Dr. Goldberg. >> >> Caroline >>> On 7/16/02 2:44 PM, " tlschuldt2001 " <tlschuldt2001@...> wrote: >>> >>> How is it that Dr. Goldberg decided to put your kids on antivirals? What is >>> the test or combination of tests that guided his treatment? Thanks, Terri >>> waiting to see Dr. Goldberg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Caroline, That is fantastic and very interesting information! Thank you for sharing. I am so excited to get started with Dr. G...I will keep you all posted! Lori Re: Antivirals Lori, We were doing physical therapy before seeing Dr. G, and have continued that with the same physical therapist. I'm not sure what med did it (I think we were just on Nizoral and an SSRI at the time), but our son now has reflexes when he did not before. This was discovered by a pediatric specialist who has seen him since age 1 (he is now 7). I think it was one of biggest surprises of her career. She said " THIS JUST DOESN'T HAPPEN! " . He jumped from being around the 80% for large motor skills to the 98% in one year after being pretty consistently at the 80% since age one. His physical therapist says his strength issues are really coming around. I attribute this all to Dr. Goldberg's careful treatment... each med we have added (with the exception of one SSRI that was not for him ;P) has shown us progress in one way or another. It's all about getting the body functioning properly. It's hard to be patient... Dr. Goldberg always likes to see a child stabilized on one med before he moves to the next (unless they have an adverse reaction, in which case he might pull them off of it). We have yet to try several things that Dr. G is considering because he is very systematic (and rightly so) about making changes one variable at a time. At present we have tried Nizoral, Paxil, Celexa, & Valtrex... with the possibility of Erythromycin (for underlying strep), Wellbutrin (for some quiet ADD tendencies) and Kutapressin in the future. By the way, I have communicated with a couple of moms who told me that their children had their muscle tone normalize after starting with Dr. G. You may or may not be aware that there is some research coming out about some cases of Cerebral Palsy being viral. I can't say that my son's muscle tone has normalized, but he is definitely more coordinated than he was before. Maybe the next med...! Best of luck to you. (Oh, wouldn't it be nice if we could all do lunch?). Caroline >On 7/19/02 11:35 AM, " pl9071@... " <pl9071@...> wrote: > Caroline > My son has severe low muscle tone can you tell me what DR G did to help > increase his strength? > Thank you > Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Lori, We were doing physical therapy before seeing Dr. G, and have continued that with the same physical therapist. I'm not sure what med did it (I think we were just on Nizoral and an SSRI at the time), but our son now has reflexes when he did not before. This was discovered by a pediatric specialist who has seen him since age 1 (he is now 7). I think it was one of biggest surprises of her career. She said " THIS JUST DOESN'T HAPPEN! " . He jumped from being around the 80% for large motor skills to the 98% in one year after being pretty consistently at the 80% since age one. His physical therapist says his strength issues are really coming around. I attribute this all to Dr. Goldberg's careful treatment... each med we have added (with the exception of one SSRI that was not for him ;P) has shown us progress in one way or another. It's all about getting the body functioning properly. It's hard to be patient... Dr. Goldberg always likes to see a child stabilized on one med before he moves to the next (unless they have an adverse reaction, in which case he might pull them off of it). We have yet to try several things that Dr. G is considering because he is very systematic (and rightly so) about making changes one variable at a time. At present we have tried Nizoral, Paxil, Celexa, & Valtrex... with the possibility of Erythromycin (for underlying strep), Wellbutrin (for some quiet ADD tendencies) and Kutapressin in the future. By the way, I have communicated with a couple of moms who told me that their children had their muscle tone normalize after starting with Dr. G. You may or may not be aware that there is some research coming out about some cases of Cerebral Palsy being viral. I can't say that my son's muscle tone has normalized, but he is definitely more coordinated than he was before. Maybe the next med...! Best of luck to you. (Oh, wouldn't it be nice if we could all do lunch?). Caroline >On 7/19/02 11:35 AM, " pl9071@... " <pl9071@...> wrote: > Caroline > My son has severe low muscle tone can you tell me what DR G did to help > increase his strength? > Thank you > Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 In a message dated 10/2/02 10:56:33 PM Central Daylight Time, dmccreary@... writes: > I'm just curious, regarding the DAN protocol, does anyone know how often the > bloodwork is checked in general and particularly during chelation? > I think it varies depending on the doc but most docs experienced with chelation check CBCs (blood), mineral levels (blood and urine) and metal output plus kidney function (with urine and/or stool tests) after every 3-4 rounds which works out to be about every 6-15 weeks depending on whether you are taking a chelator continously or taking longer breaks between cycles. They also run metabolic panels to check liver function throughout but I'm not sure what their timing is with that -- every 4-6 months, I think, unless it shows a problem. Many also run regular stool tests to check for gut bug flare-ups as well. For other DAN stuff we've done in the past, the amino acid tests and comprehensive digestive stool analysis were run every six months unless the stool test showed a major problem with a gut bug then they were run after treatment to ensure it was clear. Plus there were several tests run only one time to rule out various things. Gaylen Quote Link to comment Share on other sites More sharing options...
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