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Many thanks to all of you who replied my questions. All your suggestions and

informations are very helpful. Thanks again!

Lucy

________________________________

From: " Googahly@... " <Googahly@...>

Sent: Tue, March 1, 2011 11:16:39 PM

Subject: Re: Re: Famvir price

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.Â

(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

>

> 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

>

>

>

>

>

>

>

> [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]

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[Non-text portions of this message have been removed]

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Medical will not pick up Famvir without doing a TAR (treatment authorization

request). Dr G would have to explain the reasons to the MediCal office.

FYI - in CA there is no wait list but you must be a Regional Center client

because they are the keepers of the waiver.

Laureen

Thumb typed - typos will be a plenty!

On Feb 28, 2011, at 8:50 PM, Karla Fine <karla_fine@...> wrote:

> 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.Â

(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

> >

> > 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

> >

> >

> >

> >

> >

> >

> >

> >

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Hi Robyn -

Did you do a TAR for the Famvir? I was told by CVS that I had to do a TAR

and it would require Dr. G providing documentation for medical necessity. I

didn¹t want to bother him with that.

Can you tell me which Pharmacy that you use?

Laureen

On 2/27/11 12:40 PM, " Robyn & Greg Coggins " <rngcoggs@...> wrote:

>

>

>

>

>

> 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>

> <mailto:lucy1628%40> >

>

> Subject: Re: Re: Famvir price

>

> <mailto:%40>

> <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>

> <mailto:Googahly%40aol.com> " <Googahly@... <mailto:Googahly%40aol.com>

>

> <mailto:Googahly%40aol.com> >

>

> <mailto:%40>

> <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>

> <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%40> _

>

> (mailto:chocolatiluv@... <mailto:chocolatiluv%40>

> <mailto:chocolatiluv%40> ) >

>

> _ <mailto:_%40>

> <mailto:_%40> _

>

> (mailto: <mailto:%40>

> <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.Â

>

> (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

>

>> >

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