Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <chocolatiluv@...> Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... " <Googahly@...> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 My son has been on Famvir for years. We have Health Net and pay a $50 co-pay for a generic version. I thought that sounded pretty steep until I found out how much the stuff actually costs! So my answer to you is that it depends on the type of drug coverage you have. Check with your insurance company to see if it's covered and if so, what your co-pay would be. HTH, Donna > > > > Mine have always been on Famvir, since within the first few months of starting > > > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > > > until after the first year, and they only stayed positive that once. It was > >at > > > > the 1 year mark that I saw something amazing change about his eyes - his eyes > > started 'leading' his head one day, instead of turning head and then focusing > > eyes. We had JUST checked titers the month before, but when this happened, I > > > asked to check them again - & that was the first and only time they were ever > > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > > > though G reacts w/behavioral changes to a few types of foods, Dr G never even > > particularly picked on us about diet either, unlike some who get so restricted > > > you can't eat anything. Of course I might have already been ocd enough about > >it > > > > anyway - I don't remember much about those days lol.) > > > > ittle brother's titers never showed up. When he was off the meds a couple of > > > years and having bad CFS, one night he spiked a 106.9 fever (and looked the > >best > > > > he'd looked in months while he had that fever). There aren't many things that > > > > can cause so high a fever w/out showing any overt other signs of illness, but > > HHV6 is one that can. I wish we had gone right then & had him checked for > >HHV6 > > > > but I was too busy getting him cooled off, then just marveling at how much > > better he was. (It's not like that lab would have changed anything here > > locally.) > > > > Which antiviral does best may depend on what viruses tend to show up in your > > kids' labs, as well as other markers. Dr G identifies what he calls a > >'typical > > > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > > they are.) > > > > > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got > the most recent test sent to her(in hand) yet. > For the past yr. he has been covering his eyes & squinting a lot. I guess this > is one of the reason for being on all the different antivirals.Also the high #`s > on his test. Has any of your children have this problem with senstivity to > light? > . > He constantly craves sugar We hide sweets under lock & key its very difficult. > I really don`t know how these parents get their children to eat veg.(fresh) he > will not. Very picky eater. His mother was the same & still is. He will only > eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 > yr.old. His allergen test came back low whih I assume is good. > > So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting > his eyes checked. > Thanks Carole> > > > > ________________________________ > > From: chocolatiluv <chocolatiluv@> > > > > Sent: Thu, February 24, 2011 8:33:12 PM > > Subject: Famvir > > > >  > > Curious any parents of your children on famvir. What doseage in miligrams are > > your children on ect? How long before seeing titers in normal range? & what > > dosage did this happen & how long did this take? > > Carole > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 I do not live in CA, but found the following information at this website: http://www.mrmib.ca.gov/ I hope this helps out. April ** *Applications Available Now for California’s New Pre-existing Condition Insurance Plan * Applications are now available for California’s Pre-existing Condition Insurance Plan (PCIP), a new state health insurance program that provides coverage to individuals who have been denied health coverage or offered only unaffordable options On Sun, Feb 27, 2011 at 2:57 AM, Lucy Town <lucy1628@...> wrote: > > > Thank you for your reply, Gaylen! I know we're not qualified for > Madicaid..... > is Medicaid waiver program different? I'll check to see, but not optimistic > as > Government of CA is bankrupt. > > Lucy > > ________________________________ > From: " Googahly@... " <Googahly@...> > > Sent: Sat, February 26, 2011 11:44:55 PM > Subject: Re: Re: Famvir price > > > Our insurance through Blue Cross Blue Shield covers it and so does > Medicaid. Have you looked into Medicaid waiver programs in your state? The > waiting lists are usually long but well worth getting your child onto the > list. > > Gaylen > > In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, > lucy1628@... writes: > > We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. > > I > expect he would be using Famvir certain time later. The price of Famvir > (generic) scares me ... it would cost more than $30 a day at the dose of > (500 mg > x 3) My question is: (1) Does your insurance really cover such an > expensive > medicine? (2) Does anybody know any insurance (in California - we're not > qualified for any government program) that covers medicine (not much else) > so > that the premium would be affordable? > > Thanks in advance! > > Lucy > > ________________________________ > From: chocolatiluv <_chocolatiluv@..._ > (mailto:chocolatiluv@...) > > _ _ (mailto: ) > Sent: Fri, February 25, 2011 1:57:36 PM > Subject: Re: Famvir > > > > > > Mine have always been on Famvir, since within the first few months of > starting > > > . Can't remember the doses early on. Titers to HHV6 didn't even > show up > > > > until after the first year, and they only stayed positive that once. It > was > >at > > > > the 1 year mark that I saw something amazing change about his eyes - his > eyes > > started 'leading' his head one day, instead of turning head and then > focusing > > eyes. We had JUST checked titers the month before, but when this > happened, I > > > asked to check them again - & that was the first and only time they were > ever > > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. > (Even > > > though G reacts w/behavioral changes to a few types of foods, Dr G never > even > > particularly picked on us about diet either, unlike some who get so > restricted > > > you can't eat anything. Of course I might have already been ocd enough > about > >it > > > > anyway - I don't remember much about those days lol.) > > > > ittle brother's titers never showed up. When he was off the meds a > couple of > > > years and having bad CFS, one night he spiked a 106.9 fever (and looked > the > >best > > > > he'd looked in months while he had that fever). There aren't many > things that > > > > can cause so high a fever w/out showing any overt other signs of > illness, but > > HHV6 is one that can. I wish we had gone right then & had him checked > for > >HHV6 > > > > but I was too busy getting him cooled off, then just marveling at how > much > > better he was. (It's not like that lab would have changed anything here > > locally.) > > > > Which antiviral does best may depend on what viruses tend to show up in > your > > kids' labs, as well as other markers. Dr G identifies what he calls a > >'typical > > > > HHV6 kid' by more patterns in the labs than just titers. (I don't know > what > > they are.) > > > > > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) > hasn`t got > the most recent test sent to her(in hand) yet. > For the past yr. he has been covering his eyes & squinting a lot. I guess > this > is one of the reason for being on all the different antivirals.Also the > high #`s > on his test. Has any of your children have this problem with senstivity to > > light? > . > He constantly craves sugar We hide sweets under lock & key its very > difficult. > I really don`t know how these parents get their children to eat > veg.(fresh) he > will not. Very picky eater. His mother was the same & still is. He will > only > eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for > a 12 > yr.old. His allergen test came back low whih I assume is good. > > So hopefully this inc. in Famvir will help him. Dr. G. mentioned also > getting > his eyes checked. > Thanks Carole> > > > > ________________________________ > > From: chocolatiluv <chocolatiluv@...> > > _ _ (mailto: ) > > Sent: Thu, February 24, 2011 8:33:12 PM > > Subject: Famvir > > > >  > > Curious any parents of your children on famvir. What doseage in > miligrams are > > your children on ect? How long before seeing titers in normal range? & > what > > dosage did this happen & how long did this take? > > Carole > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 If your child has a diagnosis of autism he/she is eligible for MediCal w/o consideration of family income. You can get what they call an institutional deeming waiver from your Regional Center. There is also a low-cost insurance program in CA; I think it's called Healthy Families. All the best, Robyn From: Lucy Town <lucy1628@...> Subject: Re: Re: Famvir price Date: Sunday, February 27, 2011, 12:57 AM  Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... " <Googahly@...> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 April, Thank you for the info. I applied as it sounded good (can't deny by law) but they raised premium by 100% with the terms like: office visits not counted toward deductibles; Outpatient Lab. X-ray is % percent AFTER annual Out of Pocket met which is very high. Private insurance company has ways to get individuals no matter how. Lucy Famvir > > > > Â > > Curious any parents of your children on famvir. What doseage in > miligrams are > > your children on ect? How long before seeing titers in normal range? & > what > > dosage did this happen & how long did this take? > > Carole > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Robyn, My son got CFS not autism. Started visiting Dr. G. in Sept. last year. Is CFS eligible for MediCal w/o consideration of family income? Thank you! Lucy ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Sun, February 27, 2011 9:45:45 AM Subject: Re: Re: Famvir price If your child has a diagnosis of autism he/she is eligible for MediCal w/o consideration of family income. You can get what they call an institutional deeming waiver from your Regional Center. There is also a low-cost insurance program in CA; I think it's called Healthy Families. All the best, Robyn From: Lucy Town <lucy1628@...> Subject: Re: Re: Famvir price Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... " <Googahly@...> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 No. I believe you have to have a developmental disability. You may want to check MediCal eligibility online. all the best, Robyn From: Lucy Town <lucy1628@...> Subject: Re: Re: Famvir price Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... " <Googahly@...> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 This is true for developmental delays etc – though Medical does not cover FamVir but either pays for Acyclovir in full or covers the co-pay and a lot of other meds. Not sure about CFS. Talk with the office and see what diagnosis is used. Also, Dr G is sympathetic to med costs – and will prescribe Acyclovir over FamVir if you are not covered – its better than no med at all. Check out all the low cost insurance options too. Best _____ From: [mailto: ] On Behalf Of Robyn & Greg Coggins Sent: Sunday, February 27, 2011 9:46 AM Subject: Re: Re: Famvir price If your child has a diagnosis of autism he/she is eligible for MediCal w/o consideration of family income. You can get what they call an institutional deeming waiver from your Regional Center. There is also a low-cost insurance program in CA; I think it's called Healthy Families. All the best, Robyn From: Lucy Town <lucy1628@... <mailto:lucy1628%40> > Subject: Re: Re: Famvir price <mailto:%40> Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... <mailto:Googahly%40aol.com> " <Googahly@... <mailto:Googahly%40aol.com> > <mailto:%40> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... <mailto:lucy1628%40> writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@... <mailto:_chocolatiluv%40> _ (mailto:chocolatiluv@... <mailto:chocolatiluv%40> ) > _ <mailto:_%40> _ (mailto: <mailto:%40> ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ <mailto:_%40> _ (mailto: <mailto:%40> ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Hey, , My son's been on Famvir for over a year now and MediCal picks up the copay every month. Robyn From: Lucy Town <lucy1628@... <mailto:lucy1628%40> > Subject: Re: Re: Famvir price <mailto:%40> Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... <mailto:Googahly%40aol.com> " <Googahly@... <mailto:Googahly%40aol.com> > <mailto:%40> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... <mailto:lucy1628%40> writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@... <mailto:_chocolatiluv%40> _ (mailto:chocolatiluv@... <mailto:chocolatiluv%40> ) > _ <mailto:_%40> _ (mailto: <mailto:%40> ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ <mailto:_%40> _ (mailto: <mailto:%40> ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Hey, , My son's been on Famvir for a year now and MediCal picks up the copay. Robyn From: Lucy Town <lucy1628@... <mailto:lucy1628%40> > Subject: Re: Re: Famvir price <mailto:%40> Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... <mailto:Googahly%40aol.com> " <Googahly@... <mailto:Googahly%40aol.com> > <mailto:%40> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... <mailto:lucy1628%40> writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@... <mailto:_chocolatiluv%40> _ (mailto:chocolatiluv@... <mailto:chocolatiluv%40> ) > To: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 FYI if you are in CA and your child has a diagnosis of autism... they are elligible for Medi-Cal. Now medi-cal does not cover much... we have it as a secondary insurance and it covers the copay of a few medications, but many it does not... if you don't have health insurance for your child it would at least help... it should cover most labs I think... and if you see a Medi-cal eligible dr as your main pediatritian it would cover much of that. Also, ask your Dr for less expensive options... you don't want to stop treatment all together because you go bankrupt. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 What is a Medicaid waiver and how do I know if my son would qualify? We do currently have insurance... and Medi-Cal as a coinsurance... though Medi-Cal does not pay for many perscriptions... Sometimes our copays end up being around $100. Just trying to use all avenues to save money so more is available for treatments down the road. Any info here would be helpful, thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 He was diagnosed of Receptive & Expressive Language Disorder by a language specialist, Auditory Processing Disorder by an audiologist, PDD and Selective Mutism (a childhood Anxiety Disorder) by two psychologists. Are those considered developmental disabilities? I'll check with MediCal but if you have the knowledge, I appreciate your advise. Thank you very much! Lucy ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Sun, February 27, 2011 12:00:18 PM Subject: Re: Re: Famvir price No. I believe you have to have a developmental disability. You may want to check MediCal eligibility online. all the best, Robyn From: Lucy Town <lucy1628@...> Subject: Re: Re: Famvir price Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... " <Googahly@...> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 I may be wrong about CAL but in Florida it was a seven year waiting list we got in five. Don't wait raise hell! Total jerks come first when it comes to state money. Sad but true! ----- Forwarded Message ---- From: Robyn & Greg Coggins <rngcoggs@...> Sent: Sun, February 27, 2011 12:45:45 PM Subject: Re: Re: Famvir price If your child has a diagnosis of autism he/she is eligible for MediCal w/o consideration of family income. You can get what they call an institutional deeming waiver from your Regional Center. There is also a low-cost insurance program in CA; I think it's called Healthy Families. All the best, Robyn From: Lucy Town <lucy1628@...> Subject: Re: Re: Famvir price Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... " <Googahly@...> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 I'm not sure if things have changed, but there is no " waiting list " per se for Regional Center services. There is an approval process once you submit documentation or have them diagnose. Services start a month or two after that. In our situation, it took somewhat longer as our case worker passed away and Noah's paperwork was lost. I applied for Regional Center services in April and he started receiving services in November of that same year. All the best, Robyn From: Lucy Town <lucy1628@...> Subject: Re: Re: Famvir price Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... " <Googahly@...> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Sounds like it to me. You should contact your local Regional Center and get the process started right away. He should also be eligible for speech and special ed preK services starting at the age of 3 through your local school district. Please feel free to email me off list for more info. All the best, Robyn From: Lucy Town <lucy1628@...> Subject: Re: Re: Famvir price Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " Googahly@... " <Googahly@...> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, lucy1628@... writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <_chocolatiluv@..._ (mailto:chocolatiluv@...) > _ _ (mailto: ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > _ _ (mailto: ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 No waiting list in NY. Just need an adaptive score under 70. > > > > > > Mine have always been on Famvir, since within the first few months of > > starting > > > . Can't remember the doses early on. Titers to HHV6 didn't even > > show up > > > > > > until after the first year, and they only stayed positive that once. It > > was > > >at > > > > > > the 1 year mark that I saw something amazing change about his eyes - his > > eyes > > > started 'leading' his head one day, instead of turning head and then > > focusing > > > eyes. We had JUST checked titers the month before, but when this > > happened, I > > > asked to check them again - & that was the first and only time they were > > ever > > > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. > > (Even > > > though G reacts w/behavioral changes to a few types of foods, Dr G never > > even > > > particularly picked on us about diet either, unlike some who get so > > restricted > > > you can't eat anything. Of course I might have already been ocd enough > > about > > >it > > > > > > anyway - I don't remember much about those days lol.) > > > > > > ittle brother's titers never showed up. When he was off the meds a > > couple of > > > years and having bad CFS, one night he spiked a 106.9 fever (and looked > > the > > >best > > > > > > he'd looked in months while he had that fever). There aren't many > > things that > > > > > > can cause so high a fever w/out showing any overt other signs of > > illness, but > > > HHV6 is one that can. I wish we had gone right then & had him checked > > for > > >HHV6 > > > > > > but I was too busy getting him cooled off, then just marveling at how > > much > > > better he was. (It's not like that lab would have changed anything here > > > locally.) > > > > > > Which antiviral does best may depend on what viruses tend to show up in > > your > > > kids' labs, as well as other markers. Dr G identifies what he calls a > > >'typical > > > > > > HHV6 kid' by more patterns in the labs than just titers. (I don't know > > what > > > they are.) > > > > > > > > > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) > > hasn`t got > > the most recent test sent to her(in hand) yet. > > For the past yr. he has been covering his eyes & squinting a lot. I guess > > this > > is one of the reason for being on all the different antivirals.Also the > > high #`s > > on his test. Has any of your children have this problem with senstivity to > > light? > > . > > He constantly craves sugar We hide sweets under lock & key its very > > difficult. > > I really don`t know how these parents get their children to eat > > veg.(fresh) he > > will not. Very picky eater. His mother was the same & still is. He will > > only > > eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for > > a 12 > > yr.old. His allergen test came back low whih I assume is good. > > So hopefully this inc. in Famvir will help him. Dr. G. mentioned also > > getting > > his eyes checked. > > Thanks Carole> > > > > > > ________________________________ > > > From: chocolatiluv <chocolatiluv@> > > > _ _ (mailto: ) > > > Sent: Thu, February 24, 2011 8:33:12 PM > > > Subject: Famvir > > > > > >  > > > Curious any parents of your children on famvir. What doseage in > > miligrams are > > > your children on ect? How long before seeing titers in normal range? & > > what > > > dosage did this happen & how long did this take? > > > Carole > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > [Non-text portions of this message have been removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 , If your child has a developmental disability, such as Autism, your Alta Regional worker, (in California), can fill paperwork out for your child to have him qualify for deeming. I reject that notion completely, but it allows your child to qualify for a Medical Waiver. That means your child qualifies, regardless of family income. It is especially helpful to cover ER visit co-pays and hospital co-pays. ly, I don't utilize this as much as I should for things like prescription co-pays. Hope that helps. Sent from my iPhone On Feb 27, 2011, at 1:39 PM, " Pedersen " <mpedestrian@...> wrote: > What is a Medicaid waiver and how do I know if my son would qualify? We do currently have insurance... and Medi-Cal as a coinsurance... though Medi-Cal does not pay for many perscriptions... Sometimes our copays end up being around $100. Just trying to use all avenues to save money so more is available for treatments down the road. > > Any info here would be helpful, thank you. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 We have Blue Shield. It covers all but the $10 copayment.  Call the Department of Social Services and ask for a MediCal waiver. Mcal waiver excludes the parents' income and assets.  HTH Karla From: Lucy Town <lucy1628@...> Subject: Re: Re: Famvir price Date: Saturday, February 26, 2011, 5:58 PM  We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <chocolatiluv@...> Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 Yes, Medicaid waiver programs allow children with disabilities to qualify for Medicaid without considering the parents' income. They also often offer other services like respite, habilitation training, hippo therapy, aquatic therapy, massage therapy, etc. They waiting lists are often very long -- 11 years in Texas -- but worth getting your child on the list early. You can most likely find the sign up info through the Department of Aging and Disability Services web site. Gaylen In a message dated 2/27/2011 2:57:23 A.M. Central Standard Time, lucy1628@... writes: Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " _Googahly@..._ (mailto:Googahly@...) " <_Googahly@..._ (mailto:Googahly@...) > _ _ (mailto: ) Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, _lucy1628@..._ (mailto:lucy1628@...) writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <__chocolatiluv@..._ (mailto:_chocolatiluv@...) _ (mailto:_chocolatiluv@..._ (mailto:chocolatiluv@...) ) > __ _ (mailto:_ ) _ (mailto:_ _ (mailto: ) ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > __ _ (mailto:_ ) _ (mailto:_ _ (mailto: ) ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 There is a waiver called MDCP -- medically dependent children's program -- but I'm not sure it's available in all states. Kids with ongoing, chronic medical issues can qualify but it's a bit harder to get than the other programs and doesn't offer quite as much. The need for an ongoing antiviral would probably make it easier to qualify. Gaylen In a message dated 2/27/2011 1:14:06 P.M. Central Standard Time, lucy1628@... writes: Robyn, My son got CFS not autism. Started visiting Dr. G. in Sept. last year. Is CFS eligible for MediCal w/o consideration of family income? Thank you! Lucy ________________________________ From: Robyn & Greg Coggins <_rngcoggs@..._ (mailto:rngcoggs@...) > _ _ (mailto: ) Sent: Sun, February 27, 2011 9:45:45 AM Subject: Re: Re: Famvir price If your child has a diagnosis of autism he/she is eligible for MediCal w/o consideration of family income. You can get what they call an institutional deeming waiver from your Regional Center. There is also a low-cost insurance program in CA; I think it's called Healthy Families. All the best, Robyn > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > __ _ (mailto:_ ) _ (mailto:_ _ (mailto: ) ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 Is this a recent thing where Medicaid won't cover Famvir? It was covered for my son with no problems. He switched back to Valtrex a few months ago. Gaylen In a message dated 2/27/2011 2:18:29 P.M. Central Standard Time, crosswilsons@... writes: This is true for developmental delays etc – though Medical does not cover FamVir but either pays for Acyclovir in full or covers the co-pay and a lot of other meds. Not sure about CFS. Talk with the office and see what diagnosis is used. Also, Dr G is sympathetic to med costs – and will prescribe Acyclovir over FamVir if you are not covered – its better than no med at all. Check out all the low cost insurance options too. Best _____ From: _ _ (mailto: ) [mailto:_ _ (mailto: ) ] On Behalf Of Robyn & Greg Coggins Sent: Sunday, February 27, 2011 9:46 AM _ _ (mailto: ) Subject: Re: Re: Famvir price If your child has a diagnosis of autism he/she is eligible for MediCal w/o consideration of family income. You can get what they call an institutional deeming waiver from your Regional Center. There is also a low-cost insurance program in CA; I think it's called Healthy Families. All the best, Robyn From: Lucy Town <_lucy1628@..._ (mailto:lucy1628@...) <mailto:lucy1628%40> > Subject: Re: Re: Famvir price _ _ (mailto: ) <mailto:%40> Date: Sunday, February 27, 2011, 12:57 AM Thank you for your reply, Gaylen! I know we're not qualified for Madicaid..... is Medicaid waiver program different? I'll check to see, but not optimistic as Government of CA is bankrupt. Lucy ________________________________ From: " _Googahly@..._ (mailto:Googahly@...) <mailto:Googahly%40aol.com> " <_Googahly@..._ (mailto:Googahly@...) <mailto:Googahly%40aol.com> > _ _ (mailto: ) <mailto:%40> Sent: Sat, February 26, 2011 11:44:55 PM Subject: Re: Re: Famvir price Our insurance through Blue Cross Blue Shield covers it and so does Medicaid. Have you looked into Medicaid waiver programs in your state? The waiting lists are usually long but well worth getting your child onto the list. Gaylen In a message dated 2/26/2011 7:58:12 P.M. Central Standard Time, _lucy1628@..._ (mailto:lucy1628@...) <mailto:lucy1628%40> writes: We don't have insurance - Dr. G. prescribes Acyclovir for my son right now. I expect he would be using Famvir certain time later. The price of Famvir (generic) scares me ... it would cost more than $30 a day at the dose of (500 mg x 3) My question is: (1) Does your insurance really cover such an expensive medicine? (2) Does anybody know any insurance (in California - we're not qualified for any government program) that covers medicine (not much else) so that the premium would be affordable? Thanks in advance! Lucy ________________________________ From: chocolatiluv <__chocolatiluv@..._ (mailto:_chocolatiluv@...) <mailto:_chocolatiluv%40> _ (mailto:_chocolatiluv@..._ (mailto:chocolatiluv@...) <mailto:chocolatiluv%40> ) > __ _ (mailto:_ ) <mailto:_%40> _ (mailto:_ _ (mailto: ) <mailto:%40> ) Sent: Fri, February 25, 2011 1:57:36 PM Subject: Re: Famvir > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > __ _ (mailto:_ ) <mailto:_%40> _ (mailto:_ _ (mailto: ) <mailto:%40> ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2011 Report Share Posted March 1, 2011 The PDD diagnosis would probably get him on the wait list. Once his number comes up, they look at individual challenges more than diagnosis. Gaylen In a message dated 2/27/2011 6:16:00 P.M. Central Standard Time, lucy1628@... writes: He was diagnosed of Receptive & Expressive Language Disorder by a language specialist, Auditory Processing Disorder by an audiologist, PDD and Selective Mutism (a childhood Anxiety Disorder) by two psychologists. Are those considered developmental disabilities? I'll check with MediCal but if you have the knowledge, I appreciate your advise. Thank you very much! Lucy ________________________________ From: Robyn & Greg Coggins <_rngcoggs@..._ (mailto:rngcoggs@...) > _ _ (mailto: ) Sent: Sun, February 27, 2011 12:00:18 PM Subject: Re: Re: Famvir price No. I believe you have to have a developmental disability. You may want to check MediCal eligibility online. all the best, Robyn > > Mine have always been on Famvir, since within the first few months of starting > . Can't remember the doses early on. Titers to HHV6 didn't even show up > > until after the first year, and they only stayed positive that once. It was >at > > the 1 year mark that I saw something amazing change about his eyes - his eyes > started 'leading' his head one day, instead of turning head and then focusing > eyes. We had JUST checked titers the month before, but when this happened, I > asked to check them again - & that was the first and only time they were ever > positive. Yet Dr G said that he was clearly straight up an HHV6 kid. (Even > though G reacts w/behavioral changes to a few types of foods, Dr G never even > particularly picked on us about diet either, unlike some who get so restricted > you can't eat anything. Of course I might have already been ocd enough about >it > > anyway - I don't remember much about those days lol.) > > ittle brother's titers never showed up. When he was off the meds a couple of > years and having bad CFS, one night he spiked a 106.9 fever (and looked the >best > > he'd looked in months while he had that fever). There aren't many things that > > can cause so high a fever w/out showing any overt other signs of illness, but > HHV6 is one that can. I wish we had gone right then & had him checked for >HHV6 > > but I was too busy getting him cooled off, then just marveling at how much > better he was. (It's not like that lab would have changed anything here > locally.) > > Which antiviral does best may depend on what viruses tend to show up in your > kids' labs, as well as other markers. Dr G identifies what he calls a >'typical > > HHV6 kid' by more patterns in the labs than just titers. (I don't know what > they are.) > > > Noah`s has always battled HHV6 since being tested She(Noah`s mother) hasn`t got the most recent test sent to her(in hand) yet. For the past yr. he has been covering his eyes & squinting a lot. I guess this is one of the reason for being on all the different antivirals.Also the high #`s on his test. Has any of your children have this problem with senstivity to light? .. He constantly craves sugar We hide sweets under lock & key its very difficult. I really don`t know how these parents get their children to eat veg.(fresh) he will not. Very picky eater. His mother was the same & still is. He will only eat canned g.beans, lima beans,corn(try to limit this)He is very tiny for a 12 yr.old. His allergen test came back low whih I assume is good. So hopefully this inc. in Famvir will help him. Dr. G. mentioned also getting his eyes checked. Thanks Carole> > > ________________________________ > From: chocolatiluv <chocolatiluv@...> > __ _ (mailto:_ ) _ (mailto:_ _ (mailto: ) ) > Sent: Thu, February 24, 2011 8:33:12 PM > Subject: Famvir > >  > Curious any parents of your children on famvir. What doseage in miligrams are > your children on ect? How long before seeing titers in normal range? & what > dosage did this happen & how long did this take? > Carole > > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
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