Re: Re: HHV6 and Now 3rd one diagnosed

September 16, 2008

's virus showed up in the first test; not so for Noah. It took a three

month challenge on Valtrex and then the titers shot up. Pretty amazing, but I

was truly relieved. It just confirmed we were on the right track.

Now I'm worried about my little one. He doesn't have any signs of autism, but he

alternates so quickly between happy and high and then hostile and angry. You

never know what child you're going to get. He woke up angry this morning, and

for the first time in the four weeks since school started, he got in trouble and

wouldn't listen. He was so angry and hysterical when I picked him up; I think it

really upset his teacher. She was so concerned and wanted to calm him before he

left school. Before she talked to him, he said he " hated school " and wanted to

" stab " it (not acceptable speech at our house). Everything was " stupid, " and

everyone was out to get him in trouble. It was pretty bad! I'm actually glad my

mom was there to witness it. She knew he was difficult but not this extent.

Suddenly, though, the cloud lifted he was happy (this happened in an instant)

and he spent the rest of the afternoon in somewhat of a manic high.

Since my other two boys see Dr. G already, he was kind enough to order Elijah's

labs at our last appointment, so Elijah officially sees him for the first time

on Oct. 1. After today's incident, I called and she was actually about

ready to call me. Noah's labs have HHV6 on the rise again, so we're going to be

switching antivirals. Elijah showed very low NK cells and high HHV6. i feel

relieved because it explains so much; I've really felt like I've been banging my

head against a wall.

Anyway, just thought I'd vent. If anyone can give me assistance on the NK cells

and what that might mean, I'd appreciate it. My other two were on the low side

of normal.

TIA,

Robyn

> From: <thecolemans4@...>

> Subject: Re: Re: HHV6

>

> Date: Tuesday, September 16, 2008, 6:25 PM

> Our experience was that my son's HHV6 titers were always

> 1:10, but Dr G said he was a classic case of HHV6

> 'hiding'. It was when his titers went up to 1:300

> or 1:600 (can't remember) and it coincided w/a wonderful

> change in the way his eyes moved (they 'led' his

> head for the first time) that we knew we had hit the

> virus. So a rising titer isnt' always a bad thing

> alone. Other combinations of markers come into play to

> determine if there is a problem. Odds are, you'll be

> on Famvir next. That was the best one for the boys.

>

> I'm so curious about the immunovir. Have you seen

> much? Did you start it early? Were NKs low and

> that's why he's on it? Are you paying a fortune

> for it?

>

> Thanks,

>

> Re: HHV6

>

> Anyone have any info on HHV 6 rising? This is the highest

> I have seen so far at 1:320 labcorp. When EBV is elevated,

> HHV6 is not, and vice versa. We are on Valtrex now, Guess I

> am trying to figure out Dr. G's next move. This is a

> first for us. Thanks for any info. We are also on Immunovir.

> Thanks again

>

> Sincerely Noel

>

September 17, 2008

Hey Robyn -

That sounds like a kid begging for some Nizoral .

That was my son prior to starting the Nizoral recently. Now I have a

consistently happy guy. Too bad we can only stay on Nizoral about 6 months (if

that hasn't changed), 'cause it did him this way before.

So is he going to start meds too? What did you say his NKs were?

Re: HHV6

>

> Anyone have any info on HHV 6 rising? This is the highest

> I have seen so far at 1:320 labcorp. When EBV is elevated,

> HHV6 is not, and vice versa. We are on Valtrex now, Guess I

> am trying to figure out Dr. G's next move. This is a

> first for us. Thanks for any info. We are also on Immunovir.

> Thanks again

>

> Sincerely Noel

>

September 18, 2008

Hey, .

He sees Dr. G on Oct. 1, where we'll get the official test results, so I don't

have any exact numbers. is mailing me the results so I can have my

questions ready. My real concern is his extreme emotionalism. We had another

outburst last night that ended with him sobbing, telling us he was " stupid " and

he wants to kill himself. This is heartbreaking coming from any child, but he's

only five. I have no idea where he gets this stuff! It also scares me for the

future if we don't get this under control now.

I do agree regarding the Nizoral. I've been suspecting yeast as part of the

culprit here. He craves breads, other starches and sugars. I'm going to start

him on some Kyodophilus and see what happens. Any idea of the dosage, or should

I just follow the directions on the bottle?

TIA,

Robyn

>

> > From: <thecolemans4>

> > Subject: Re: Re: HHV6

> > groups (DOT) com

> > Date: Tuesday, September 16, 2008, 6:25 PM

> > Our experience was that my son's HHV6 titers were

> always

> > 1:10, but Dr G said he was a classic case of HHV6

> > 'hiding'. It was when his titers went up to

> 1:300

> > or 1:600 (can't remember) and it coincided w/a

> wonderful

> > change in the way his eyes moved (they 'led'

> his

> > head for the first time) that we knew we had hit the

> > virus. So a rising titer isnt' always a bad

> thing

> > alone. Other combinations of markers come into play

> to

> > determine if there is a problem. Odds are,

> you'll be

> > on Famvir next. That was the best one for the boys.

> >

> > I'm so curious about the immunovir. Have you

> seen

> > much? Did you start it early? Were NKs low and

> > that's why he's on it? Are you paying a

> fortune

> > for it?

> >

> > Thanks,

> >

> > Re: HHV6

> >

> > Anyone have any info on HHV 6 rising? This is the

> highest

> > I have seen so far at 1:320 labcorp. When EBV is

> elevated,

> > HHV6 is not, and vice versa. We are on Valtrex now,

> Guess I

> > am trying to figure out Dr. G's next move. This is

> a

> > first for us. Thanks for any info. We are also on

> Immunovir.

> > Thanks again

> >

> > Sincerely Noel

> >

September 19, 2008

Hey Robyn-

You're describing my oldest again. His outbursts, his despair and self-loathing

when he gets out of control - saying the same things, and as early as 5. Like

you, I've been terrified - I dread the teen years like you wouldn't believe. I

intend to fill his world with things to keep him mystified like motorcycles and

exotic pets and all of the other things that kept me sane and alive as a

teenager. We already have entirely too much in common! Poor child.

Seriously, though. Even my husband - the one who has rarely been able to say

with any certainty that even the most obvious changes ever happend for years

here - is solid in his statement of how much he has improved in the very brief

time on Nizoral and just how surprising it is, once again.

Re: HHV6

> >

> > Anyone have any info on HHV 6 rising? This is the

> highest

> > I have seen so far at 1:320 labcorp. When EBV is

> elevated,

> > HHV6 is not, and vice versa. We are on Valtrex now,

> Guess I

> > am trying to figure out Dr. G's next move. This is

> a

> > first for us. Thanks for any info. We are also on

> Immunovir.

> > Thanks again

> >

> > Sincerely Noel

> >

September 20, 2008

2nd grade is hell. It was for my oldest last year, and now it is for my

youngest this year.

Why does this affect each child so differently? Maybe age of onset, combination

of factors, etc? I've experienced (on milder scales) just about every range of

symptoms at different times growing up, starting adhd age 5, then PANDAS age

8 & 9, then after severe mono age 10-12, developing very aspie traits thru age

16 - no social interaction, no eye contact, major problems w/comminication

(rarely spoke), major sensory issues, toe walking, then age 18-20 severe

fatigue, then 20s thru 25 constant pain (fibromyalgia), then slowly a decline of

all the symptoms until age 27, and for a few years there - symptom free, pain

free, energetic, and very confused about it lol. I stopped toe-walking around

age 27-28, then finally at age 30 (while pregnant w/my first one-a big

anti-inflammatory immune modulation going on w/pregnancy), I walked completely

normally for the first time. No songs stuck in my head anymore, a quiet brain

for the first time (I didn't

know that was normal). Then in 2003, chronic strep hit again, and it all

started all over again. Part of me wishes I hadn't experienced normal, because

now, with the new perspective and experiencing this cycle all over again, I'm a

lot more self-concious, a lot more hypersomatic, and way more frustrated with

the whole thing. It triggers memories I had long forgotten, and I'm more

acutely aware of my symptoms (hence the hypersomatism). But then a few weeks on

doxycycline starts clearing me up and I forget again how bad it was just a

couple of weeks ago.

I look forward to the day when I feel like I've been stable and that I can count

on my brain, and maybe be able to socialize again (I want to avoid people right

now because I'm just constantly embarrassed). I look forward to feeling good,

having the energy to go hiking and play outside like I've always loved. But as

far as living in the moment (and trying to be comfortable in it), I know that

all things are temporary and there's not a quick fix, and that despite how bad

my symptoms were as a kid & teen, I had lots of fun and interests and it's all

worthwhile where ever we're at. I spend so much time wishing I was different

than I am that I forget to enjoy what I have. I waste time observing the ways

my kids 'aren't' normal sometimes that I forget to enjoy how delightful they are

(and if yours are 2-3 and you're going thru the torture of the tantrums and

can't perceive ever enjoying this, I did too) and just meet them where they're

at.

My now 3rd grader is doing awesome this year, but in 2nd grade, I was perceiving

his educational future as very bleak indeed. Now that my 7yr old is in 2nd, and

it's like a repeat (if not perhaps worse & he's the one who's supposed to be

mostly 'typical') of last year ... and a couple of other 2nd graders are going

thru the same thing ... I think it's the grade, the age, the new expectations.

I could strangle his teacher for writing down every single tiny detail of every

little thing he does wrong ... she's going to kill his spirit is she doesn't

watch it. But then I thought so last year w/my other one too.

HTH-

Re: HHV6 and Now 3rd one diagnosed

Thanks for your response. I've been really going crazy this week

trying to wrap my mind around these things he says and does. He's so

different from our other two. How can the virus affect in such

profoundly different ways? I suppose it depends on what area of the

brain it affects. We've seen so much progress with Noah and ; I

hope we experience the same with Elijah. I got 's STAR testing

report (took it in May, about three months into the protocol) and the

difference between 2nd and 3rd grade was amazing. He did so well. He

struggled a little when school started this year, but now that he's in

the groove, he's got straight A's.

Unfortunately with Noah, we're seeing a reaction (a specialist called

it " curricular stress. " ) with the start of 2nd grade. He gets very

overwhelmed because a lot of the stuff presented in class is

confusing, such as place value. He actually reverted back to his

" comfort " activity, which is to cut out and draw tons of Blue's Clues.

That's always our key that something is stressing him out. We decided

to put him in SDC for math and language arts, and after a week, the

Blue's Clues stuff stopped. I'm hoping that means we made the right

decision. Luckily the SDC class is small and most of the kids have

their own one on one aides. The teacher is able to give individualized

instruction to each student as well as group. In addition, they have a

speech therapist come in once per week to work on group socialization,

and the teacher holds regular sensory integration activities.

Thanks for your posts. I feel better and I can't wait to start Elijah

on the protocol. We all need some peace and sanity back in our lives.

All the best,

Robyn

September 20, 2008

It's good to remember that so-called typical kids have issues with transitions,

new environments and anxiety too. My 5 year old on the spectrum son has

transitioned nicely (so far) into kindergarten, which I was really concerned

about, and my friend's very smart, social, outgoing typical daughter is having

the worst time. She has cried and had major meltdowns for two weeks now. She

begs her mom to let her stay home. I would have never saw that coming and

neither did her mom. I love those little reminders that some behaviors are just

universal ones that affect all kids; whether they're on the spectrum or not.

And, I especially love when I get to see my son blossom and instead of being the

one concerned over my child's behaviors get to lend my ear to all my friends

with td kids who are perplexed by their children's crazy behavior. It's a nice

change to be on the other side of the fence!

Thanks for all the on-going valuable input!

xo

dawn