Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Has anyone ever gone off the anti viral and started again? We ran out and had to wait 5 days to get it. My son showed no changes in the 5 days. However, when he started up again we noticed vocal ticks and stemmy behavior he has not done in a long time. I am tempted to stop and will be reporting to doctor G. Any thoughts? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 of my 3 nids kids....the one least affected....we ran out, as our insurance covers very little, we dumped valtrex for 6mo ($200 per mo for just this antiviral....not including other prescrib drugs, plus high co-pays on lab fees, plus the phone consult of $180)as he was doing so great at that point. well, we did add it back in, although I will admit to spliting pills in order to maintain, albeit at a lower mg daily dose. when hhv6 titers became an issue again. bottom line, he still needs it, even though for this child he is pretty much cured (was not autistic...strictly nids/cfs) i have looked at some homeopathic alternatives for herpes like red algae, and their are some teas out there that reduce herpes. but all i have done is research, have not tried any of this stuff. problem for most regular folks, that don't pull in $100k per yr, and you have more then one nids child, and your insurance will not cover these phone consults, this treatment gets really, really expensive. until they drop the price of antivirals it will always be a struggle. hopefully some day soon the valtrex will be in generic form. cat dazseaton@... wrote: Has anyone ever gone off the anti viral and started again? We ran out and had to wait 5 days to get it. My son showed no changes in the 5 days. However, when he started up again we noticed vocal ticks and stemmy behavior he has not done in a long time. I am tempted to stop and will be reporting to doctor G. Any thoughts? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 phone consults with who? I ran out and saw some increased behavior because the virus isn't in control yet I learned not to run out. - -- In , catherine quinn <quinn.cat1968@...> wrote: > > of my 3 nids kids....the one least affected....we ran out, as our insurance covers very little, we dumped valtrex for 6mo ($200 per mo for just this antiviral....not including other prescrib drugs, plus high co-pays on lab fees, plus the phone consult of $180)as he was doing so great at that point. > > well, we did add it back in, although I will admit to spliting pills in order to maintain, albeit at a lower mg daily dose. when hhv6 titers became an issue again. > > bottom line, he still needs it, even though for this child he is pretty much cured (was not autistic...strictly nids/cfs) i have looked at some homeopathic alternatives for herpes like red algae, and their are some teas out there that reduce herpes. but all i have done is research, have not tried any of this stuff. > > problem for most regular folks, that don't pull in $100k per yr, and you have more then one nids child, and your insurance will not cover these phone consults, this treatment gets really, really expensive. until they drop the price of antivirals it will always be a struggle. > > hopefully some day soon the valtrex will be in generic form. > > cat > dazseaton@... wrote: > Has anyone ever gone off the anti viral and started again? We ran out and > had to wait 5 days to get it. My son showed no changes in the 5 days. > However, when he started up again we noticed vocal ticks and stemmy behavior he has > not done in a long time. I am tempted to stop and will be reporting to > doctor G. Any thoughts? > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 If your insurance doesn't cover it you can get it from the company for free if you qualify and sounds like you would. Just ask your doctor > Has anyone ever gone off the anti viral and started again? We ran out and > had to wait 5 days to get it. My son showed no changes in the 5 days. > However, when he started up again we noticed vocal ticks and stemmy behavior he has > not done in a long time. I am tempted to stop and will be reporting to > doctor G. Any thoughts? > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Hi - Don't stop them ... you may be seeing a bit of die-off. I ran out once and couldn't get more for a few days too, and let me tell you, I got seriously chewed out! Dr G doesn't take that lightly, so be prepared to get some strong feelings on that if you discuss it. Just be prepared for the wrath. I'd recommend waiting the two weeks of die-off period and stick to the regimen. Five days off wouldn't show you a significant behavior change, but you can have a re-trigger of die-off. Now whether he'd want to switch to Famvir or something, I don't know, so you'll still want to discuss this with him (and swear you will never do it again). Resistance is a risk when stopping the meds. When d/c-ing Valtrex, the proper way is tapering off the dose rather than sudden removal. Just be prepared for a bit of wrath and hang in there. HTH- --- catherine quinn <quinn.cat1968@...> wrote: > dazseaton@... wrote: > Has anyone ever gone off the anti viral > and started again? We ran out and > had to wait 5 days to get it. My son showed no > changes in the 5 days. > However, when he started up again we noticed vocal > ticks and stemmy behavior he has > not done in a long time. I am tempted to stop and > will be reporting to > doctor G. Any thoughts? > Thanks, > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 if you are a senior citizen, or your income is just above poverty level...not with a income of $50k.... the math on medical care: dr' fee $188 per mo lab fees $100 avg (after co-pay) per mo other co pays other meds $70 per mo valtrex/famvir co pay $200 per mo total per child $558 monthly medical expenses x 3 children on nids meds it is pretty expensive.... loking4answrs <loking4answrs@...> wrote: If your insurance doesn't cover it you can get it from the company for free if you qualify and sounds like you would. Just ask your doctor > Has anyone ever gone off the anti viral and started again? We ran out and > had to wait 5 days to get it. My son showed no changes in the 5 days. > However, when he started up again we noticed vocal ticks and stemmy behavior he has > not done in a long time. I am tempted to stop and will be reporting to > doctor G. Any thoughts? > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 dr g's phone consult cost is $188 per month per child and is not covered by insurance loking4answrs <loking4answrs@...> wrote: phone consults with who? I ran out and saw some increased behavior because the virus isn't in control yet I learned not to run out. - -- In , catherine quinn <quinn.cat1968@...> wrote: > > of my 3 nids kids....the one least affected....we ran out, as our insurance covers very little, we dumped valtrex for 6mo ($200 per mo for just this antiviral....not including other prescrib drugs, plus high co-pays on lab fees, plus the phone consult of $180)as he was doing so great at that point. > > well, we did add it back in, although I will admit to spliting pills in order to maintain, albeit at a lower mg daily dose. when hhv6 titers became an issue again. > > bottom line, he still needs it, even though for this child he is pretty much cured (was not autistic...strictly nids/cfs) i have looked at some homeopathic alternatives for herpes like red algae, and their are some teas out there that reduce herpes. but all i have done is research, have not tried any of this stuff. > > problem for most regular folks, that don't pull in $100k per yr, and you have more then one nids child, and your insurance will not cover these phone consults, this treatment gets really, really expensive. until they drop the price of antivirals it will always be a struggle. > > hopefully some day soon the valtrex will be in generic form. > > cat > dazseaton@... wrote: > Has anyone ever gone off the anti viral and started again? We ran out and > had to wait 5 days to get it. My son showed no changes in the 5 days. > However, when he started up again we noticed vocal ticks and stemmy behavior he has > not done in a long time. I am tempted to stop and will be reporting to > doctor G. Any thoughts? > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 I agree with die off. I just posted in another post that when my son ran out of anti-viral for a day he spiked a 102 degree fever and broke out in roseola -infant herpes six. He's not an infant. However, I guess his body had been harboring the virus for some time and he needed the anti-viral to start to fight it. He also did not show in his blood work higher titers for Herpes 6 prior to beginning the anti-viral. I've also felt with him that increased stimming was more strep related. However, I've read that increased stimming can occur due to an increase in ammonia in the childs body when there is a viral or bacterial die off. > > Has anyone ever gone off the anti viral > > and started again? We ran out and > > had to wait 5 days to get it. My son showed no > > changes in the 5 days. > > However, when he started up again we noticed vocal > > ticks and stemmy behavior he has > > not done in a long time. I am tempted to stop and > > will be reporting to > > doctor G. Any thoughts? > > Thanks, > > > > > > __________________________________________________ > 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.