valtrex question

[Guest guest]

We will begin using Valtrex next week and I wanted to ask this group a

few questions about it. I have heard you should wash off the dye in

case it is problamatic. Do you then just crush the pills if your child

can't swallow them? Does it have a bad taste so that it needs to be

mixed with something strong? Does it matter what time of day you give

this? What should I look for in postives and negatives? We used

Acyclovir last fall and stopped after two weeks because my son's

behavior was so awful. I want to be more prepared this time. Is this

medicine stronger and/or better than the other one I used before?

I know this is a lot of questions but everyone on this list is so much

more versed than I am and I want this to work this time.

Thanks!

Cheryl

[Guest guest]

Cheryl

I will try to answer your questions. If you want more info on

Valtrex, use the search to search the archives....you can go back

years on this.

Yes, wash off the blue dye. The pill is very bitter, so you have to

mix in something. We had hard time getting it down this way so my

son had to learn to swallow pills at age 3. We gave this 3x per

day. The " bads " that you may notice could be a die off reaction so

to be sure you need to give it 2-3 weeks. Negative reactions of

taking the med would happen immediately, like rash. As I

understand, Valtrex is a better choice than acyclovir.

>

> We will begin using Valtrex next week and I wanted to ask this

group a

> few questions about it. I have heard you should wash off the dye

in

> case it is problamatic. Do you then just crush the pills if your

child

> can't swallow them? Does it have a bad taste so that it needs to

be

> mixed with something strong? Does it matter what time of day you

give

> this? What should I look for in postives and negatives? We used

> Acyclovir last fall and stopped after two weeks because my son's

> behavior was so awful. I want to be more prepared this time. Is

this

> medicine stronger and/or better than the other one I used before?

> I know this is a lot of questions but everyone on this list is so

much

> more versed than I am and I want this to work this time.

> Thanks!

> Cheryl

>

[Guest guest]

Cheryl, I can only go on memory, and geez its not so good anymore.

As I recall, there was no real difference in him the 1st 3 days of

the med. Then he started to act irritable, had less expressive

language, like a hard time coming up with words, he would be weepy

at times. This lasted 2-3 weeks and just when I was sure the med

was wrong he would start acting better. And people would come by

that had not seen him in awhile and say that he is talking more or

more responsive to questions. I hope this helps.

> > >

> > > We will begin using Valtrex next week and I wanted

> > to ask this

> > group a

> > > few questions about it. I have heard you should

> > wash off the dye

> > in

> > > case it is problamatic. Do you then just crush

> > the pills if your

> > child

> > > can't swallow them? Does it have a bad taste so

> > that it needs to

> > be

> > > mixed with something strong? Does it matter what

> > time of day you

> > give

> > > this? What should I look for in postives and

> > negatives? We used

> > > Acyclovir last fall and stopped after two weeks

> > because my son's

> > > behavior was so awful. I want to be more prepared

> > this time. Is

> > this

> > > medicine stronger and/or better than the other one

> > I used before?

> > > I know this is a lot of questions but everyone on

> > this list is so

> > much

> > > more versed than I am and I want this to work this

> > time.

> > > Thanks!

> > > Cheryl

> > >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

When we started ganciclovir, my son was extremely aggressive for

several weeks. His teachers were getting extremely upset. Took

him off of that and he is now put on famvir. Again all this week

his aggressions are up. He's biting people. But, not as severely

as before. I've heard with brain trauma injuries for example, that

aggression can go up as one of the healing stages that they warn

people about...an increase of frustration with an increase of

awareness that they are not able to communicate well and stuff. He

is actually improving in so many other ways...his ability to follow

directions, and listen and he's even started to say a few things.

The other day he said, " I want my momma. " And when he needed a new

diaper he came to me and said, " I pooh. " So, lately when his

teachers are moaning... " what's wrong with him....why is he being so

aggressive? " I just smile kindly and say, " I don't know. "

Because, of course they are totally anti-medicine at his school.

But, I can see progress every day now and so I am very hopeful for

the future.

> > > >

> > > > We will begin using Valtrex next week and I wanted

> > > to ask this

> > > group a

> > > > few questions about it. I have heard you should

> > > wash off the dye

> > > in

> > > > case it is problamatic. Do you then just crush

> > > the pills if your

> > > child

> > > > can't swallow them? Does it have a bad taste so

> > > that it needs to

> > > be

> > > > mixed with something strong? Does it matter what

> > > time of day you

> > > give

> > > > this? What should I look for in postives and

> > > negatives? We used

> > > > Acyclovir last fall and stopped after two weeks

> > > because my son's

> > > > behavior was so awful. I want to be more prepared

> > > this time. Is

> > > this

> > > > medicine stronger and/or better than the other one

> > > I used before?

> > > > I know this is a lot of questions but everyone on

> > > this list is so

> > > much

> > > > more versed than I am and I want this to work this

> > > time.

> > > > Thanks!

> > > > Cheryl

> > > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Thanks so much for the information. I think I am

going to start him on it tomorrow. I am prepared for

the negatives and will just plow through this time.

Good look to you too with this switch. Thanks to

too. I appreciate it.

Cheryl

--- friendsofcam <friendsofcam@...> wrote:

> When we started ganciclovir, my son was extremely

> aggressive for

> several weeks. His teachers were getting extremely

> upset. Took

> him off of that and he is now put on famvir. Again

> all this week

> his aggressions are up. He's biting people. But,

> not as severely

> as before. I've heard with brain trauma injuries

> for example, that

> aggression can go up as one of the healing stages

> that they warn

> people about...an increase of frustration with an

> increase of

> awareness that they are not able to communicate well

> and stuff. He

> is actually improving in so many other ways...his

> ability to follow

> directions, and listen and he's even started to say

> a few things.

> The other day he said, " I want my momma. " And when

> he needed a new

> diaper he came to me and said, " I pooh. " So,

> lately when his

> teachers are moaning... " what's wrong with him....why

> is he being so

> aggressive? " I just smile kindly and say, " I

> don't know. "

> Because, of course they are totally anti-medicine

> at his school.

> But, I can see progress every day now and so I am

> very hopeful for

> the future.

>

>

>

> > > > >

> > > > > We will begin using Valtrex next week and I

> wanted

> > > > to ask this

> > > > group a

> > > > > few questions about it. I have heard you

> should

> > > > wash off the dye

> > > > in

> > > > > case it is problamatic. Do you then just

> crush

> > > > the pills if your

> > > > child

> > > > > can't swallow them? Does it have a bad

> taste so

> > > > that it needs to

> > > > be

> > > > > mixed with something strong? Does it matter

> what

> > > > time of day you

> > > > give

> > > > > this? What should I look for in postives

> and

> > > > negatives? We used

> > > > > Acyclovir last fall and stopped after two

> weeks

> > > > because my son's

> > > > > behavior was so awful. I want to be more

> prepared

> > > > this time. Is

> > > > this

> > > > > medicine stronger and/or better than the

> other one

> > > > I used before?

> > > > > I know this is a lot of questions but

> everyone on

> > > > this list is so

> > > > much

> > > > > more versed than I am and I want this to

> work this

> > > > time.

> > > > > Thanks!

> > > > > Cheryl

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

It can be compounded--I have it done--

" K. Wood " <joelkwood@...> wrote: We are new to the group

and just saw Dr. Goldberg for the first time last

Wed. May 28th. We are running into trouble getting our son to swallow the

crushed up Valtrex. We have tried every trick we can think of and have

resorted to giving it to him while he sleeps. Can this drug be compounded

into a liquid form so it can go down easier? Can it be given by injection?

Also, although it is only day three we are not seeing die off yet. He is

maybe a little tired but there is no irritability. Did anyone have a similar

situation where they did not experience the die off reaction. If so how did

you know Valtrex was killing the virus? Will the blood work indicate this?

Thanks so much.

Martha Wood

__________________________________

Wood

joelkwood@... <mailto:jkwood@...>

901-415-6236 (h)

[Guest guest]

Thank you so much.

Martha

_____

From: [mailto: ] On Behalf Of

meljackmom

Sent: Sunday, June 01, 2008 6:25 AM

Subject: Re: Valtrex question

My son hated Valtrex, and I don't know how much ever really went

down! My hubby spent a weekend with him working with him on

swallowing pills. In the long run it has been wonderful him being

able to swallow pills. I put everything he takes in a clear gel cap,

there is no taste at all.

>

> We are new to the group and just saw Dr. Goldberg for the first

time last

> Wed. May 28th. We are running into trouble getting our son to

swallow the

> crushed up Valtrex. We have tried every trick we can think of and

have

> resorted to giving it to him while he sleeps. Can this drug be

compounded

> into a liquid form so it can go down easier? Can it be given by

injection?

>

> Also, although it is only day three we are not seeing die off yet.

He is

> maybe a little tired but there is no irritability. Did anyone have

a similar

> situation where they did not experience the die off reaction. If so

how did

> you know Valtrex was killing the virus? Will the blood work

indicate this?

>

> Thanks so much.

> Martha Wood

>

> __________________________________

>

> Wood

> joelkwood@... <mailto:jkwood@...>

> 901-415-6236 (h)

>

>

>

>

[Guest guest]

my little one hasn't learned to swallow pills yet so i make homemade rice

krispy treats, roll them into little balls and hide them in there. she eats

them every time. we usually give her a tiny little ball with nothing in it

to " reward " her. works like a gem.

good luck!

[Guest guest]

Hi Martha

My kid struggled against it at first as well.  I remember being rather panicked

about it too, and we literally had to pin him down the first couple of weeks -

miserable.  He was two, and we had crushed it, mixed it w/ cold rice milk (I

think Dr G is allowing rice milk less often now), and would squirt the med in

his mouth.  It was one of those syringes that you could get the little point in

no matter how hard they clamped their mouth shut .  He eventually got used to

it, accepted it, and the struggle was over. I would reward it w/a tiny candy

treat (like one white Smartie or frozen rice dream ice cream, etc) to get the

taste out of his mouth after washing it down.

 About a year later, I was taking my pills while the kids stood there watching,

and my oldest asked what I was doing (he had improved very much on the meds by

this time), and I told them I was putting the pills straight into my tummy by

swallowing them, and that one day, they would be able to swallow them too, and

then they won't have to taste that yucky yucky medicine.  So my son (about to be

4, I think) picked up his pill (I was just about to crush it) and promptly

swallowed it, and smiled.  I flipped out, screached with joy, literally jumping

up and down laughing and applauding, and his little brother, who was two, picked

his up and swallowed it too.  Since then, they always swallow their pills.  I

wrap them in margarine after they're washed to keep the taste from getting in

their mouth (they were always real sensitive to the blue dye).

I've heard some people compound it and not have success, a few have gotten away

with it.  I've heard one kid pops the pill in his mouth and chews it like it was

candy w/no problem (gasp! lol)!

My kids never displayed what I can say was die off.  They would respond

immediately to a med.  No die-off w/Diflucan (which we started first) - just

shocking dramatic improvements in 3 days (not as common).  Antivirals are the

" slow working " medicine, and you may see nothing at all initially, but it really

doesn't mean it's not doing your child incredible good.  I saw some improvement

in the first couple of weeks, but very subtle in the beginning.  They just

seemed brighter and more energetic. The antivirals do their best work over

months.  However, some people see problems begin to resolve quite quickly - I've

heard of hypotonia (very poor muscle tone) turn around and improve in a very

short time. 

Dr Goldberg will be monitoring labs.  Titers weren't helpful to us - they were

negative.  They had HHV6 (we think for a lot of reasons) that was " in hiding "

according to a pattern that Dr G looks for.  So a lot of different markers

within the labs can indicate if a med is helpful.  One day I noticed my oldest

son suddenly (2 1/2 yrs into treatment) had a neat change in his eye contact -

which had already been really good for a time, but suddenly I noticed his eyes

" leading " his head - instead of turning his head & then focusing on what he was

looking at, his eyes " went first " ... it was really cool to see and I had not

noticed it didn't happen (or that it happened w/normal people) until it did

happen.  It went hand in hand w/other things just seeming " great " , and even

though we had just run HHV6 titers shortly before, I asked Dr G to run them

again, and they had gone UP from 1:10 to 1:360, and it was the first time we had

any way to show that his

immune system was responding to HHV6. 

His brother never had titers manifest - his first HHV6 was 1:10, then dropped

off to negative.  He really improved on the protocol (he started at 18months

old, and he wasn't ASD but he was ill and his labs were a lot worse than his ASD

brother), and Natural Killer cells came up well, but when he was off the

protocol for 9 - 12 months, he fell back into a Chronic Fatigue spell and was

sick for 8 months last year.  He got better immediately after spiking a 106.9

fever one night - then was better and almost back to normal within 2 weeks. 

HHV6 is associated with rapid rising high fevers and febrile seizures (he wasn't

having seizures - at 106.9 fever, he looked better than he had in months and

months, and that is brain- melting high).   I really think there is a difference

in the fact that his brother developed titers and has never regressed off the

protocol, but he did not, and once again, he is falling ill again.  This time, I

will have him put on

the protcol as soon as I'm able.

Sorry - that was a lot more info than you were asking for! lol  I just start

remembering things....  There is just no straight short answer or one way to see

improvements when it comes to .

HTH-

Valtrex question

We are new to the group and just saw Dr. Goldberg for the first time last

Wed. May 28th. We are running into trouble getting our son to swallow the

crushed up Valtrex. We have tried every trick we can think of and have

resorted to giving it to him while he sleeps. Can this drug be compounded

into a liquid form so it can go down easier? Can it be given by injection?

Also, although it is only day three we are not seeing die off yet. He is

maybe a little tired but there is no irritability. Did anyone have a similar

situation where they did not experience the die off reaction. If so how did

you know Valtrex was killing the virus? Will the blood work indicate this?

Thanks so much.

Martha Wood

____________ _________ _________ ____

Wood

joelkwoodcomcast (DOT) net <mailto:jkwoodmidsouth (DOT) rr.com>

901-415-6236 (h)

[Guest guest]

Hi

Thanks for sharing your experience. My 10 year ASD has been on valtrex for 6

weeks and initially I too saw clarity in his speech, focus and some definite

improvement. that lasted about a week or so and then he kind of plateaued.

We then had a pandas flare up and then i believe yeast die off from upping his

kyodophillis because he was on an antibiotic. He know again seems more in sync.I

believe the valtrex is helping its just slow. We start diflucan soon. Do some

kids just have a need for long term antiviral treatment?

Vicki

From: & lt;thecolemans4@... & gt;

Subject: Re: Valtrex question

Date: Sunday, June 1, 2008, 6:21 PM

Hi Martha

My kid struggled against it at first as well. & nbsp; I remember being rather

panicked about it too, and we literally had to pin him down the first couple of

weeks - miserable. & nbsp; He was two, and we had crushed it, mixed it w/ cold

rice milk (I think Dr G is allowing rice milk less often now), and would squirt

the med in his mouth. & nbsp; It was one of those syringes that you could get the

little point in no matter how hard they clamped their mouth shut . & nbsp; He

eventually got used to it, accepted it, and the struggle was over. & nbsp;I would

reward it w/a tiny candy treat (like & nbsp;one white & nbsp;Smartie or & nbsp;frozen

rice dream ice cream, etc) to get the taste out of his mouth after washing it

down.

& nbsp;About a year later, I was taking my pills while the kids stood there

watching, and my oldest asked what I was doing (he had improved very much on the

meds by this time), and I told them I was putting the pills straight into my

tummy by swallowing them, and that one day, they would be able to swallow them

too, and then they won't have to taste that yucky yucky medicine. & nbsp; So my

son (about to be 4, & nbsp;I think) & nbsp;picked up his pill (I was just about to

crush it) and promptly swallowed it, and smiled. & nbsp; I flipped out, screached

with joy, literally jumping up and down laughing and applauding, and his little

brother, who was two, picked his up and swallowed it too. & nbsp; Since then, they

always swallow their pills. & nbsp; I wrap them in margarine after they're washed

to keep the taste from getting in their mouth (they were always real sensitive

to the blue dye).

I've heard some people compound it and not have success, a few have gotten away

with it. & nbsp; I've heard one kid pops the pill in his mouth and chews it like

it was candy w/no problem (gasp! lol)!

My kids never displayed what I can say was die off. & nbsp; They would respond

immediately to a med. & nbsp; No die-off w/Diflucan (which we started first) -

just shocking dramatic improvements in 3 days (not as common). & nbsp; Antivirals

are the " slow working " medicine, and you may see nothing at all initially, but

it really doesn't mean it's not doing your child incredible good. & nbsp; I saw

some improvement in the first couple of weeks, but very subtle in the

beginning. & nbsp; They just seemed brighter and & nbsp;more energetic. & nbsp;The

antivirals & nbsp;do their best work over months. & nbsp; However, some people see

problems begin to resolve quite quickly - I've heard of hypotonia (very poor

muscle tone) turn around and improve in a very short time. & nbsp;

Dr Goldberg will be monitoring labs. & nbsp; Titers weren't helpful to us - they

were negative. & nbsp; They had HHV6 (we think for a lot of reasons) that was " in

hiding " according to a pattern that Dr G looks for. & nbsp; So a lot of different

markers within the labs can indicate if a med is helpful. & nbsp; & nbsp;One day I

noticed & nbsp;my oldest son suddenly (2 1/2 yrs into treatment) had a neat change

in his eye contact - which had already been really good for a time, but suddenly

I noticed his eyes " leading " his head - instead of turning his head & amp; then

focusing on what he was looking at, his eyes " went first " ... it was really cool

to see and I had not noticed it didn't happen (or that it happened w/normal

people) until it did happen. & nbsp; It went hand in hand w/other things just

seeming " great " , and even though we had just run HHV6 titers shortly before, I

asked Dr G to run them again, and they had gone UP from 1:10 to 1:360, and it

was the first time

we had any way to show that his

immune system was responding to HHV6. & nbsp;

His brother never had titers manifest - his first HHV6 was 1:10, then dropped

off to negative. & nbsp; He really improved on the protocol (he started at

18months old, and he wasn't ASD but he was ill and his labs were a lot worse

than his ASD brother), and Natural Killer cells came up well, but when he was

off the protocol for 9 - 12 months, he fell back into a Chronic Fatigue spell

and was sick for 8 months last year. & nbsp; He got better immediately after

spiking a 106.9 fever one night - then was better and almost back to normal

within 2 weeks. & nbsp; HHV6 is associated with rapid rising high fevers and

febrile seizures (he wasn't having seizures - at 106.9 fever, he looked better

than he had in months and months, and that is brain- melting high). & nbsp; & nbsp;

I really think there is a difference in the fact that his brother developed

titers and has never regressed off the protocol, but he did not, and once again,

he is falling ill again. & nbsp; This time,

I will have him put on

the protcol as soon as I'm able.

Sorry - that was a lot more info than you were asking for! lol & nbsp; I just

start remembering things.... & nbsp; There is just no straight short answer or one

way to see improvements when it comes to .

HTH-

Valtrex question

We are new to the group and just saw Dr. Goldberg for the first time last

Wed. May 28th. We are running into trouble getting our son to swallow the

crushed up Valtrex. We have tried every trick we can think of and have

resorted to giving it to him while he sleeps. Can this drug be compounded

into a liquid form so it can go down easier? Can it be given by injection?

Also, although it is only day three we are not seeing die off yet. He is

maybe a little tired but there is no irritability. Did anyone have a similar

situation where they did not experience the die off reaction. If so how did

you know Valtrex was killing the virus? Will the blood work indicate this?

Thanks so much.

Martha Wood

____________ _________ _________ ____

Wood

joelkwoodcomcast (DOT) net & lt;mailto:jkwood@ midsouth. rr.com & gt;

901-415-6236 (h)

[Guest guest]

Hi Vicki -

Re length of antivirals, I used to be under the impression from chats w/Dr

Goldberg that you really need a two year committment to the antivirals.  Of

course, some kids are on it much longer, and my youngest son definitely needed

them longer than my older son.  They were both on the protocol 2 & 2/3 years,

but I had a severe PANDAS flare (docs wouldn't treat my chronic strep for 6

MONTHS because they labeled me a carrier and wouldn't draw ASOs - I had to go to

a doc-in-the-box to get the right labs done to show I was sick).  With the

PANDAS flare so bad, I had to quit work and couldn't afford the protocol.  My

oldest had done well and Dr G was going to try pulling him off over the next 6

months if all still looked great, but he didn't have the same confidence w/my

youngest - and he was right.  I don't know if my oldest would benefit now or

not... his evaluation last month diagnosed him Asperger syndrome (although it is

quite mild I think), whereas 3

years ago, his tests (not a full eval) showed severe autism.  Now, even off

meds, he continues to get better, but I do think in the next couple of years

(after I get treated), I'll get him back on the protocol and see if I think it

helps any more.  I know Diflucan still helps him, so why wouldn't antivirals?

One thing for you to look forward to:  in a couple of years, if all goes like it

did for us, strep won't have such a significant impact.  In the first year,

every illness will seem like a setback, but as the time on the antivirals

continues, you'll see better and more rapid recoveries from illness.  My kids

both got OCD w/ strep exactly 3 days prior to when they would have a positive

throat swab - so precise I learned to make the doctor appt 3 days from the onset

instead of going in too early.  Now, they behave like any normal kid when they

get strep - they actually run a fever and get sick instead of just going

psycho.  I've never been well treated for mine - I look forward to learning what

meds can do for me.  I know one thing, though.  Antibiotics never work on PANDAS

as well alone as they do combined w/Diflucan.  I can't wait to find out about

antivirals.  My natural killer cells are 2%, and low NKs are associated w/OCD. 

Antivirals tend to

bring them up (if it goes well) - it did with my boys - so that alone should

help w/my PANDAS I'm hoping.  Three years into it, it's not that bad, but I know

I could feel a lot better than I do when I get my ASO down from 1100.

I'd love to hear how the Diflucan goes.  THAT was a biggie!   It doesn't

" heal " alone, but boy did it resolve symptoms for us! 

Later-

Valtrex question

We are new to the group and just saw Dr. Goldberg for the first time last

Wed. May 28th. We are running into trouble getting our son to swallow the

crushed up Valtrex. We have tried every trick we can think of and have

resorted to giving it to him while he sleeps. Can this drug be compounded

into a liquid form so it can go down easier? Can it be given by injection?

Also, although it is only day three we are not seeing die off yet. He is

maybe a little tired but there is no irritability. Did anyone have a similar

situation where they did not experience the die off reaction. If so how did

you know Valtrex was killing the virus? Will the blood work indicate this?

Thanks so much.

Martha Wood

____________ _________ _________ ____

Wood

joelkwoodcomcast (DOT) net & lt;mailto:jkwood@ midsouth. rr.com & gt;

901-415-6236 (h)