Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Hi Everyone, I know this is not a new topic to many, but as a mom who is new to this protocol I could use some support from those who have been through this. We have been on Famvir & Nizoral with my 4 year old son for 34 days. He is acting more autistic than ever (he didn't act autistic before though he had sensory issues, speech delays, aud. processing delays, etc.). He is extremely sensitive to any crying or someone raising their voice which is a problem at school. He is looking at his hands a lot, twirling them in the air, and hard to reach. On my own I tried Valtrex a few months ago for two months on him. The progress that I saw during that time made me stop trying to treat my son myself and instead go see Dr. Goldberg. We were off of Valtrex for one month and are now on Famvir. I feel like we went through tons of die off on Valtrex. Is is common to go through just as much die off with the next anti-viral? The whole time titers are coming down is it just constant struggle with die-off or do things taper off and you still bring the titers down, just your kid is not feeling the effect? Any experience with what a typical path on anti-virals would be very helpful. It's hard to explain to everyone around me why he is worse than ever. Thank you! Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Colleen, I am going through the same thing right now. My son has autism and we are doing the anti-viral and anti-fungal therapy right now, it is scaring me. I called the doctor yesterday to discuss the changes we are seeing. My son is regressing right now and it is so hard to watch. The doctor says to stick with it that the changes we are seeing are normal. Just wanted to let you know you are not alone. I have to explain to the school that his behavioral changes are not anything that has changed at school and that it is because of what we are doing with the meds, they look at me like I am nuts. I do not get into the whole complicated anti-infection therapy we are doing with his teachers. I just try to keep it simple for them. My family is worried too, I have to make them understand that the regression is a good thing at the same time I am worrying about the regression just like they are, but I play it off as I confident that it will be fine and we will be soon seeing positive results. ________________________________ From: [mailto: ] On Behalf Of colleen.waguespack Sent: Wednesday, December 16, 2009 7:27 PM Subject: die off Hi Everyone, I know this is not a new topic to many, but as a mom who is new to this protocol I could use some support from those who have been through this. We have been on Famvir & Nizoral with my 4 year old son for 34 days. He is acting more autistic than ever (he didn't act autistic before though he had sensory issues, speech delays, aud. processing delays, etc.). He is extremely sensitive to any crying or someone raising their voice which is a problem at school. He is looking at his hands a lot, twirling them in the air, and hard to reach. On my own I tried Valtrex a few months ago for two months on him. The progress that I saw during that time made me stop trying to treat my son myself and instead go see Dr. Goldberg. We were off of Valtrex for one month and are now on Famvir. I feel like we went through tons of die off on Valtrex. Is is common to go through just as much die off with the next anti-viral? The whole time titers are coming down is it just constant strug gle with die-off or do things taper off and you still bring the titers down, just your kid is not feeling the effect? Any experience with what a typical path on anti-virals would be very helpful. It's hard to explain to everyone around me why he is worse than ever. Thank you! Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Hi Colleen, My son has been with doctor Goldberg since he was 4 & 1/2, he is now 11. We had horrible die off in the beginning, and I can tell you things will get better. Be patient, it takes time to heal the body. For new patients, my advice is to go back through the archives and try to find posts by Marcia Hinds, her son's story of recovery is very inspirational. She does an awesome job of explaining things. You can email me off line or I can give you my cell phone if you just want to talk Best of luck, Argie golivo@... On Dec 16, 2009, at 4:26 PM, colleen.waguespack wrote: > Hi Everyone, > I know this is not a new topic to many, but as a mom who is new to > this protocol I could use some support from those who have been > through this. We have been on Famvir & Nizoral with my 4 year old > son for 34 days. He is acting more autistic than ever (he didn't act > autistic before though he had sensory issues, speech delays, aud. > processing delays, etc.). He is extremely sensitive to any crying or > someone raising their voice which is a problem at school. He is > looking at his hands a lot, twirling them in the air, and hard to > reach. On my own I tried Valtrex a few months ago for two months on > him. The progress that I saw during that time made me stop trying to > treat my son myself and instead go see Dr. Goldberg. We were off of > Valtrex for one month and are now on Famvir. I feel like we went > through tons of die off on Valtrex. Is is common to go through just > as much die off with the next anti-viral? The whole time titers are > coming down is it just constant struggle with die-off or do things > taper off and you still bring the titers down, just your kid is not > feeling the effect? Any experience with what a typical path on anti- > virals would be very helpful. It's hard to explain to everyone > around me why he is worse than ever. > Thank you! > Colleen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 Hi and Everyone else. I missed you guys. I was off list for almost three weeks and just discovered the problem so excuse me if I didn't answer any questions you posted for me. I'm so glad to be back with you. , I have info I forward to parents that explain the medical and tell my son's story who is recovered. Email me privately if you want this info. My son, , was diagnosed when he was four years old. A leading authority on autism said he would never be okay. He was going to end up in a group home. Today, does all the things the professionals said would never happen. He studies mechanical engineering at a university on a merit scholarship. excels academically and is a member of the Engineering Honor Society. is now ranked number 2 in the junior class for engineering. He is a member of Sigma Chi Fraternity and was president of the Jewish Student Association. is a typical college student who drinks an occasional beer, goes on dates, stays out too late with friends and then sleeps through eight o'clock classes. He now has a girlfriend. I couldn't be more proud. When was little, I never imagined these things were possible. Unbelievable as it seems, this is the same child who wanted to spend every day all day long plugging in a portable radio into each outlet in the house. Marcia Quote Link to comment Share on other sites More sharing options...
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