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Hi-

Just got back from our initial visit with Dr. Goldberg and have

started Valtrx. I'd like some comments from people who are seeing

improvements with antivirals. What positive effects should I expect

if this is the right antiviral? How soon might we see something? I

know it is soon and every child is different, but I'm curious :)

Thanks,

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Hi ,

We had our initial visit with Dr.G in early May. When we got home we started

Valtrex. For the first three weeks there was nothing other than sleeping

through the night which was a small miracle in itself, but no die off like

we were expecting. Then our son spoke (he's been non-verbal for about a

year) about 10 words within a two week period and seemed very connected.

Then we started Nizoral he got very giggly and drunk acting and the language

started to drop off after he was on it for about 5 days. At the same time

his sister brought home a brutal flu that wiped out the whole family for

about two weeks, in a way it was kind of a good thing that we all got it or

we would have thought it was a die off also. The words stopped completely.

Anyway he has been well again for about 2 weeks , we just started Paxil a

few days ago and he is starting to become more alert again, and he said

" open door " tonight. Yaaaaay. That's the first word in about 4 weeks. What a

roller coaster ride, but worth it.

Original Message -----

From: " sydbugg " <cewlslgr@...>

< >

Sent: Friday, August 02, 2002 7:31 PM

Subject: Starting Valtrex

> Hi-

> Just got back from our initial visit with Dr. Goldberg and have

> started Valtrx. I'd like some comments from people who are seeing

> improvements with antivirals. What positive effects should I expect

> if this is the right antiviral? How soon might we see something? I

> know it is soon and every child is different, but I'm curious :)

> Thanks,

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

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Guest guest

Our son has been on Valtrex 3.5 weeks, so I can give you an overview

of what we've seen.

Week 1: After 2 or 3 days, exhibited dark circles around his eyes,

developed sniffles and a very mild fever. A little clingy when he

woke up, slightly more fragile overall.

Week 2: More of everything from week 1. Very fragile, outburts of

crying, wanted to watch TV all the time, wouldn't come downstairs,

refused to go for walks or get into the car, very clingy and

lethargic.

Week 3: Not as fragile but very rigid and inflexible in daily life.

Still a bit spaced-out much of the time. Fewer crying outburts, dark

circles and sniffles going away and no more fever. A little

aggressive towards baby sister.

On a positive note ... we've seen a reduction in his need for

vestibular stimulation -- no jumping, climbing, running around the

house at all. Tactile sensory issues are still present but others

seem decreased. He's very calm and able to stay with one activity for

long lengths of time.

I know from speaking with other parents that my son's experience has

been quite different from others. Again, every kid is different.

Dave

> Hi-

> Just got back from our initial visit with Dr. Goldberg and have

> started Valtrx. I'd like some comments from people who are seeing

> improvements with antivirals. What positive effects should I

expect

> if this is the right antiviral? How soon might we see something?

I

> know it is soon and every child is different, but I'm curious :)

> Thanks,

>

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Guest guest

Dave and Donna,

Thanks for the responses. I keep watching, hoping to see something-

nothing yet. I need to give it time, as we are not even up to the

full dose yet.

Thanks again,

> > Hi-

> > Just got back from our initial visit with Dr. Goldberg and have

> > started Valtrx. I'd like some comments from people who are

seeing

> > improvements with antivirals. What positive effects should I

> expect

> > if this is the right antiviral? How soon might we see

something?

> I

> > know it is soon and every child is different, but I'm curious :)

> > Thanks,

> >

>

>

>

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Guest guest

,

Just wondering what dose Dr.G put your child on and how much he weighs

thx

paul

> > > Hi-

> > > Just got back from our initial visit with Dr. Goldberg and

have

> > > started Valtrx. I'd like some comments from people who are

> seeing

> > > improvements with antivirals. What positive effects should I

> > expect

> > > if this is the right antiviral? How soon might we see

> something?

> > I

> > > know it is soon and every child is different, but I'm

curious :)

> > > Thanks,

> > >

> >

> >

> >

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TRIED VALTREX WITH HORIBLE RESULTS! SWITCHED TO FAMVIR. STILL HAD HORIBLE DIE

OFF BUT AFTER APPROX TWO WEEKS, RETURNED TO BASE. I HAVE NOTICED BETTER

FOCUS AND ATTENTION. IM TOLD THAT ONCE VIRUS IS GONE OR REDUCED, ITS LIKE A

FOG HAS LIFTED AND THESE KIDS CAN SEE CLEARER. IM STILL HOPING FOR MORE

POSITIVE RESULTS. ITS ONLY BEEN ABOUT A MONTH.

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Thanks for the reassurance. Did you have any other physical side

effects after the diarrhea cleared up? It's Sunday night and he's still

got it. He also threw up once Friday night and once Saturday morning.

He seems fine now except for the diarrhea. This is one of the few times

that I'm actually glad he's still in diapers. We must have changed him

10 times today.

ette

Donnaaron wrote:

> Absolutely. In fact, it's one of the more common side effects. My

> son had it for about five days after starting Valtrex, then it cleared

> up. Same with the reduced appetite. However, if the diarrhea is

> " massive " as you say, it probably wouldn't hurt to give Dr. Goldberg a

> call, just as a precaution. In the meantime, just be sure is

> well-hydrated.

> Donna

>

>

> starting Valtrex

>

>

> Hi Listmates:

>

> We just started Valtrex on Monday night (today is Friday). My 3 1/2

>

> year old son has had constant diarreha (spelling?) since his

> first

> birthday. This has pretty much cleared up since we put him on a

> GFCF

> diet in November and eventually eliminated a few other things (the

> last

> being soy). Anyway after starting the Valtrex on Monday, he had a

> loose

> stool on Wednesday and this morning he woke up with massive diarreha

>

> that has continued throughout the day. And he hasn't had much

> appetite

> either. Could this in anyway be related to the Valtrex? Anyone

> else

> experience this?

>

> Thanks

>

> ette

>

>

>

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Hi ette.

Besides the diarrhea, was very tired and needed much more sleep than

usual. He needed to nap for the first time in a year, and the naps lasted 3 or

4 hours. Then he would go to sleep fairly close to his regular bedtime This

went on for about four or five days. He also caught a bad cold with fever a few

days after the diarrhea stopped. He also became more auditorily defensive (i.e.

plugging his ears when the dishwasher went on or running out of the bathroom

when the toilet was flushed).

I want to add, though, that 's diarrhea was not as dramatic as you're

describing -- he would go maybe four or five times in a day instead of ten --

so, I would still give Dr. Goldberg a call on Monday if it's still bad. I

think the Valtrex temporarily makes the immune system more vulnerable so it's

possible he could just have a stomach virus and that could be what's causing the

trouble.

Good luck, and hang in there! It's worth it.

Donna

starting Valtrex

>

>

> Hi Listmates:

>

> We just started Valtrex on Monday night (today is Friday). My 3 1/2

>

> year old son has had constant diarreha (spelling?) since his

> first

> birthday. This has pretty much cleared up since we put him on a

> GFCF

> diet in November and eventually eliminated a few other things (the

> last

> being soy). Anyway after starting the Valtrex on Monday, he had a

> loose

> stool on Wednesday and this morning he woke up with massive diarreha

>

> that has continued throughout the day. And he hasn't had much

> appetite

> either. Could this in anyway be related to the Valtrex? Anyone

> else

> experience this?

>

> Thanks

>

> ette

>

>

>

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