Guest guest Posted September 24, 2011 Report Share Posted September 24, 2011 Valtrex has helped with my sons tics tremendously. The tics had been consistent for well over a year. They would change but they were very extreme. We were trying lots of stuff. The valtrex decreased them significantly. In the last month or so some tics have reemerged, but I am thinking it has to do with the start of school and allergy season. I feel valtrex has been a huge help to him. Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2011 Report Share Posted September 24, 2011 Tics are well known for being caused by strep and this is the height of strep season. Look into PANDAS caused by strep. www.pandasnetwork.org From: Colleen To: "mb12valtrex " <mb12valtrex >Sent: Saturday, September 24, 2011 2:56 AMSubject: Re: Valtrex for tics? Valtrex has helped with my sons tics tremendously. The tics had been consistent for well over a year. They would change but they were very extreme. We were trying lots of stuff. The valtrex decreased them significantly. In the last month or so some tics have reemerged, but I am thinking it has to do with the start of school and allergy season. I feel valtrex has been a huge help to him. Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2011 Report Share Posted September 24, 2011 Jenna, You might want to rule out Pandas/Lyme -TammyTo: mb12valtrex Sent: Friday, September 23, 2011 10:44 PMSubject: Valtrex for tics? Does anyone have any experience with Valtrex making a difference for a tic disorder? My 8-year-old has had periodic bouts with tics for the last three years. The tics consist of a grunting/throat clearing noise, banging with his hands, stomping his feet, etc. In the past week he has changed from grunting to saying, "Too-tee." The episodes tend to last 2-3 months at a time, and are accompanied by decreased focus and emotional control. He is currently in one of his tic cycles, which started at the end of July. In the past couple of weeks the tics have been severe - to the point where he looks like he has full-blown Tourette's. Also some OCD behaviors are present. The last 2 weeks of school have been awful for him. We ran a stool test in Mid August and did some bloodwork at the beginning of September. No markers for strep or yeast in the stool, but low Secretory IgA and general inflammation. Bloodwork revealed no EBV, no CMV, and strep antibodies were negative (this was 5 weeks after the tics started). He did have high HHV-6 titers. (HHV-6 titers were also high the last time they were checked at age 4.5). Overall IgG was low as well. We are on a GFCFSF, artificial/preservative free diet. Our daily supplements are CLO, Magnesium, Zinc, Compounded Mito support, L5MTHF, B12 injections, Vitamin D, Vitamin E, probiotic/prebiotic, CoQ10. We started Valtrex/Diflucan a week ago to knock out the HHV-6. I had noticed a decrease in the frequency of tics the night before we started the valtrex, so it's hard to say if the new meds are the cause. The tics were much lower over last weekend and have started to increase again. He had a slight rash around his mouth the other day. This is similar to a rash I have seen come and go over the last 2 months. Would appreciate any experience with Valtrex specifically for tics, or other ideas to pursue for testing/treatment. Thank you, Jenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2011 Report Share Posted September 24, 2011 Yes, consider PANDAS. Valtrex is an anti-vira and will not work against bacteria like strep. You would need an antibiotic like azithromycin to kill strep bacteria. To: "mb12valtrex " <mb12valtrex >Sent: Saturday, September 24, 2011 8:37 AMSubject: Re: Valtrex for tics? Jenna, You might want to rule out Pandas/Lyme -TammyTo: mb12valtrex Sent: Friday, September 23, 2011 10:44 PMSubject: Valtrex for tics? Does anyone have any experience with Valtrex making a difference for a tic disorder? My 8-year-old has had periodic bouts with tics for the last three years. The tics consist of a grunting/throat clearing noise, banging with his hands, stomping his feet, etc. In the past week he has changed from grunting to saying, "Too-tee." The episodes tend to last 2-3 months at a time, and are accompanied by decreased focus and emotional control. He is currently in one of his tic cycles, which started at the end of July. In the past couple of weeks the tics have been severe - to the point where he looks like he has full-blown Tourette's. Also some OCD behaviors are present. The last 2 weeks of school have been awful for him. We ran a stool test in Mid August and did some bloodwork at the beginning of September. No markers for strep or yeast in the stool, but low Secretory IgA and general inflammation. Bloodwork revealed no EBV, no CMV, and strep antibodies were negative (this was 5 weeks after the tics started). He did have high HHV-6 titers. (HHV-6 titers were also high the last time they were checked at age 4.5). Overall IgG was low as well. We are on a GFCFSF, artificial/preservative free diet. Our daily supplements are CLO, Magnesium, Zinc, Compounded Mito support, L5MTHF, B12 injections, Vitamin D, Vitamin E, probiotic/prebiotic, CoQ10. We started Valtrex/Diflucan a week ago to knock out the HHV-6. I had noticed a decrease in the frequency of tics the night before we started the valtrex, so it's hard to say if the new meds are the cause. The tics were much lower over last weekend and have started to increase again. He had a slight rash around his mouth the other day. This is similar to a rash I have seen come and go over the last 2 months. Would appreciate any experience with Valtrex specifically for tics, or other ideas to pursue for testing/treatment. Thank you, Jenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2011 Report Share Posted September 25, 2011 I have been wondering about PANDAS for a while now. Our DAN was fully expecting to see lots of strep markers when we did our stool and blood work and we had talked in June about possibly starting an antibiotic. We had done about 4 weeks of Usman's biofilm protocol prior to the reemergence of the tics. She was surprised that the strep titers were so low (ASO < 25, anti-dnase B 138). Would you still consider PANDAS with low strep markers? Who typically diagnoses PANDAS - your DAN? - a neurologist? Does it make sense to need treatment for viruses and bacteria? Also - in a previous post someone mentioned a PANDAS board that they are on. Would you mind sharing the link? Thank you again for the info. We had made so much progress before the tics - to the point where a year ago we weren't even sure the school would want to continue his IEP. By the time his reevaluation came up he was back into a tic period and we had to increase his support. If we can just get a handle on this last piece we'll be golden! Jenna > > Yes, consider PANDAS. Valtrex is an anti-vira and will not work against bacteria like strep. You would need an antibiotic like azithromycin to kill strep bacteria. >  > > > To: " mb12valtrex " <mb12valtrex > > Sent: Saturday, September 24, 2011 8:37 AM > Subject: Re: Valtrex for tics? > > >  > > Jenna, >  > You might want to rule out Pandas/Lyme >  > -Tammy > > > To: mb12valtrex > Sent: Friday, September 23, 2011 10:44 PM > Subject: Valtrex for tics? > > >  > Does anyone have any experience with Valtrex making a difference for a tic disorder? My 8-year-old has had periodic bouts with tics for the last three years. The tics consist of a grunting/throat clearing noise, banging with his hands, stomping his feet, etc. In the past week he has changed from grunting to saying, " Too-tee. " The episodes tend to last 2-3 months at a time, and are accompanied by decreased focus and emotional control. He is currently in one of his tic cycles, which started at the end of July. In the past couple of weeks the tics have been severe - to the point where he looks like he has full-blown Tourette's. Also some OCD behaviors are present. The last 2 weeks of school have been awful for him. > > We ran a stool test in Mid August and did some bloodwork at the beginning of September. No markers for strep or yeast in the stool, but low Secretory IgA and general inflammation. Bloodwork revealed no EBV, no CMV, and strep antibodies were negative (this was 5 weeks after the tics started). He did have high HHV-6 titers. (HHV-6 titers were also high the last time they were checked at age 4.5). Overall IgG was low as well. > > We are on a GFCFSF, artificial/preservative free diet. Our daily supplements are CLO, Magnesium, Zinc, Compounded Mito support, L5MTHF, B12 injections, Vitamin D, Vitamin E, probiotic/prebiotic, CoQ10. > > We started Valtrex/Diflucan a week ago to knock out the HHV-6. I had noticed a decrease in the frequency of tics the night before we started the valtrex, so it's hard to say if the new meds are the cause. The tics were much lower over last weekend and have started to increase again. He had a slight rash around his mouth the other day. This is similar to a rash I have seen come and go over the last 2 months. > > Would appreciate any experience with Valtrex specifically for tics, or other ideas to pursue for testing/treatment. > > Thank you, > Jenna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2011 Report Share Posted September 25, 2011 The yahoo group is pandas_autism A DAN can usually help with pandas but it very new so many still do not know much about diagnosing it or treating it. Keep in mind that 50% of the kids who have pandas do NOT have high strep titers. To: mb12valtrex Sent: Sunday, September 25, 2011 9:09 AMSubject: Re: Valtrex for tics? I have been wondering about PANDAS for a while now. Our DAN was fully expecting to see lots of strep markers when we did our stool and blood work and we had talked in June about possibly starting an antibiotic. We had done about 4 weeks of Usman's biofilm protocol prior to the reemergence of the tics. She was surprised that the strep titers were so low (ASO < 25, anti-dnase B 138). Would you still consider PANDAS with low strep markers? Who typically diagnoses PANDAS - your DAN? - a neurologist? Does it make sense to need treatment for viruses and bacteria? Also - in a previous post someone mentioned a PANDAS board that they are on. Would you mind sharing the link?Thank you again for the info. We had made so much progress before the tics - to the point where a year ago we weren't even sure the school would want to continue his IEP. By the time his reevaluation came up he was back into a tic period and we had to increase his support. If we can just get a handle on this last piece we'll be golden!Jenna>> Yes, consider PANDAS. Valtrex is an anti-vira and will not work against bacteria like strep. You would need an antibiotic like azithromycin to kill strep bacteria.>  > > > To: "mb12valtrex " <mb12valtrex >> Sent: Saturday, September 24, 2011 8:37 AM> Subject: Re: Valtrex for tics?> > >  > > Jenna,>  > You might want to rule out Pandas/Lyme>  > -Tammy> > > To: mb12valtrex > Sent: Friday, September 23, 2011 10:44 PM> Subject: Valtrex for tics?> > >  > Does anyone have any experience with Valtrex making a difference for a tic disorder? My 8-year-old has had periodic bouts with tics for the last three years. The tics consist of a grunting/throat clearing noise, banging with his hands, stomping his feet, etc. In the past week he has changed from grunting to saying, "Too-tee." The episodes tend to last 2-3 months at a time, and are accompanied by decreased focus and emotional control. He is currently in one of his tic cycles, which started at the end of July. In the past couple of weeks the tics have been severe - to the point where he looks like he has full-blown Tourette's. Also some OCD behaviors are present. The last 2 weeks of school have been awful for him. > > We ran a stool test in Mid August and did some bloodwork at the beginning of September. No markers for strep or yeast in the stool, but low Secretory IgA and general inflammation. Bloodwork revealed no EBV, no CMV, and strep antibodies were negative (this was 5 weeks after the tics started). He did have high HHV-6 titers. (HHV-6 titers were also high the last time they were checked at age 4.5). Overall IgG was low as well. > > We are on a GFCFSF, artificial/preservative free diet. Our daily supplements are CLO, Magnesium, Zinc, Compounded Mito support, L5MTHF, B12 injections, Vitamin D, Vitamin E, probiotic/prebiotic, CoQ10. > > We started Valtrex/Diflucan a week ago to knock out the HHV-6. I had noticed a decrease in the frequency of tics the night before we started the valtrex, so it's hard to say if the new meds are the cause. The tics were much lower over last weekend and have started to increase again. He had a slight rash around his mouth the other day. This is similar to a rash I have seen come and go over the last 2 months. > > Would appreciate any experience with Valtrex specifically for tics, or other ideas to pursue for testing/treatment. > > Thank you,> Jenna> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2011 Report Share Posted September 25, 2011 I just also want to add that other bacteria can also cause PANDAS. You can also check for mycoplasma. RuthSent from my iPhone The yahoo group is pandas_autism A DAN can usually help with pandas but it very new so many still do not know much about diagnosing it or treating it. Keep in mind that 50% of the kids who have pandas do NOT have high strep titers. To: mb12valtrex Sent: Sunday, September 25, 2011 9:09 AMSubject: Re: Valtrex for tics? I have been wondering about PANDAS for a while now. Our DAN was fully expecting to see lots of strep markers when we did our stool and blood work and we had talked in June about possibly starting an antibiotic. We had done about 4 weeks of Usman's biofilm protocol prior to the reemergence of the tics. She was surprised that the strep titers were so low (ASO < 25, anti-dnase B 138). Would you still consider PANDAS with low strep markers? Who typically diagnoses PANDAS - your DAN? - a neurologist? Does it make sense to need treatment for viruses and bacteria? Also - in a previous post someone mentioned a PANDAS board that they are on. Would you mind sharing the link?Thank you again for the info. We had made so much progress before the tics - to the point where a year ago we weren't even sure the school would want to continue his IEP. By the time his reevaluation came up he was back into a tic period and we had to increase his support. If we can just get a handle on this last piece we'll be golden!Jenna>> Yes, consider PANDAS. Valtrex is an anti-vira and will not work against bacteria like strep. You would need an antibiotic like azithromycin to kill strep bacteria.>  > > > To: "mb12valtrex " <mb12valtrex >> Sent: Saturday, September 24, 2011 8:37 AM> Subject: Re: Valtrex for tics?> > >  > > Jenna,>  > You might want to rule out Pandas/Lyme>  > -Tammy> > > To: mb12valtrex > Sent: Friday, September 23, 2011 10:44 PM> Subject: Valtrex for tics?> > >  > Does anyone have any experience with Valtrex making a difference for a tic disorder? My 8-year-old has had periodic bouts with tics for the last three years. The tics consist of a grunting/throat clearing noise, banging with his hands, stomping his feet, etc. In the past week he has changed from grunting to saying, "Too-tee." The episodes tend to last 2-3 months at a time, and are accompanied by decreased focus and emotional control. He is currently in one of his tic cycles, which started at the end of July. In the past couple of weeks the tics have been severe - to the point where he looks like he has full-blown Tourette's. Also some OCD behaviors are present. The last 2 weeks of school have been awful for him. > > We ran a stool test in Mid August and did some bloodwork at the beginning of September. No markers for strep or yeast in the stool, but low Secretory IgA and general inflammation. Bloodwork revealed no EBV, no CMV, and strep antibodies were negative (this was 5 weeks after the tics started). He did have high HHV-6 titers. (HHV-6 titers were also high the last time they were checked at age 4.5). Overall IgG was low as well. > > We are on a GFCFSF, artificial/preservative free diet. Our daily supplements are CLO, Magnesium, Zinc, Compounded Mito support, L5MTHF, B12 injections, Vitamin D, Vitamin E, probiotic/prebiotic, CoQ10. > > We started Valtrex/Diflucan a week ago to knock out the HHV-6. I had noticed a decrease in the frequency of tics the night before we started the valtrex, so it's hard to say if the new meds are the cause. The tics were much lower over last weekend and have started to increase again. He had a slight rash around his mouth the other day. This is similar to a rash I have seen come and go over the last 2 months. > > Would appreciate any experience with Valtrex specifically for tics, or other ideas to pursue for testing/treatment. > > Thank you,> Jenna> Quote Link to comment Share on other sites More sharing options...
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