Re: parent board, our experience and meds

[Guest guest]

Thanks for sharing your story and the new info on HHV6. Now that a causal link

has been found with HHV6 and CNS, it's time to take that a step further with

respect to our own children. 's story is inspiring and there are many of

Dr. G's patients with similar experiences. I can see improvements in my two boys

and we've only been with the protocol since February.

Both my husband and I are available to help with the parent board. My

little one starts kindergarten in August, so I'll have some free time during the

school year.

Looking forward to getting the word out,

Robyn

Doris and Steve <sjsmith@...> wrote:

My son, (12), has been a patient of Dr G's since 1999. We live

in

sville, MD.

We heard about Dr G at a local ABA support group mtg (FIAT). Hemry

came

one night to speak to the group about his three children, and this

Dr Goldberg.

At that time, Dr G was visiting Bethesda every 3-5 mths. We always

believe that there was

an immune connection associated with 's condition (dx'd as

PDD/NOS). My husband

had GBS when was 6 mths old. We were told it would never affect him.

Between 18-24 mths regressed. Behavior went out the ceiling, stims

started, he stopped

sleeping at night and he stopped speaking. We worked with Dr Brenner

for a while.

While he did all the blood tests needed, he had no idea how to interpret

them. We were shoving

megadoses of vitamins and supplements into . With no affect. When

Dr Brenner started

to push secretin and transfer factor (along with another unfortunate

incident in his office) we

decided it was time to leave.

was first put on Famvir. That did so-so with him. Valtrex has

always been the antiviral for him.

Valtrex made his eyes brighter. I remember him looking out the car

window and indicating that

he saw a tree.The antifungal came next. The SSRI wasn't started until

the following year.

was in a home based ABA program. His sleep pattern was way off.

SSRIs regulate the serotonin which indirectly help melatonin. After

starting with an SSRI, finally started sleeping thru the night.

We'd been following the GFCF diet since he was 3 so we just decided to

keep him on it. Effexor XR, Adderol, Tenex and Wellbutrin SR have all

been added over the years based on the NeuroSPECT scans done on

and what we report back to Dr G. If you ask Dr G, he'll tell you why

he's using certain meds. If you do a search on the

group, you'll see the various items of research many of us have

located and posted.

SSRIs have immune regulating properties. The Antivirals are safe. All

meds are monitored via monthly

blood sucks.

was recently moved from Celexa back to Paxil XR. Paxil has always

been our choice of SSRI

for him. But we understand why Dr G likes to 'stir the pot' sometimes.

is getting older and his

immune system is stabile. I've charted all of his blood sucks since day

1 in Excel and it's interesting

to see the progression. In the beginning 's lymph count was 3x the

norm. Today, it's normal.

His 95 panel allergy test used to be all over the place. Today, there

are < 10 on the watch list.

We've been able to add goat's milk back into his diet with no problems

(soy has become a problem).

As well as eggs.

What's like? He still has speech delays and his social skills

aren't there. But now that he's been

placed at Kennedy Krieger, things are looking brighter and more

positive. He's a whiz

at Math and loves anything electronic. His eyes are clear, he sleeps

thru the night and he looks

healthy. He has problems modulating his emotions and his attention can

be hit/miss

but he's a very smart kid with his own agenda.

Some of us 'old-timers' thought it was time to jump start the parent

group. Gayle and

have taken the lead. We need ideas but most especially parents. A

Parent Group can't be

a group without parents. We need to move to the foreground. We

need to be able

to say to the communities 'HELLO! Are you people ready to start reading

the research you've

been conducting all these years?' I think it's ok to send Gayle your

ideas and support :-)

Doris

land

[Guest guest]

Hi-

I'd love to be part of the parent group, so please keep me in mind.

Lately I've discovered that there are 5 or so more parents here

in Birmingham (I've met one so far at the school for children with autism that I

work for), and two more are about to start too.  I would really like any ideas

or experiences other parents have had in starting a local group too.  I know one

pediatrician has been very surprised by his patient's response - impressed

enough to refer another one of his patients to Dr Goldberg.  It seems like right

now is the time to start trying to bring more pediatricians up to date on the

latest research, and I am eager to do what I can - I could just use some ideas.

 

I really need to be involved.  I think it will help me get up and moving to get

my own boys (and begin it myself) back on the protocol  (at least my youngest

who is having CFIDS albeit much better right now - his big brother is doing

quite well and very bright-eyed and 'with-it' still, even 3 years after stopping

meds).  It is very hard for me figure out how I'm going to fly us all to get

started and then maintain the cost of three of us on the protocol lol, but then,

how can I afford not to?  But seeing the progress children are making for the

first time helps me remember the dramatic changes we experienced, and I need the

additional faith and encouragement that the meds will benefit us once again.

Thanks-

parent board, our experience and meds

My son, (12), has been a patient of Dr G's since 1999. We live in

sville, MD.

We heard about Dr G at a local ABA support group mtg (FIAT). Hemry

came

one night to speak to the group about his three children, and this

Dr Goldberg.

At that time, Dr G was visiting Bethesda every 3-5 mths. We always

believe that there was

an immune connection associated with 's condition (dx'd as

PDD/NOS). My husband

had GBS when was 6 mths old. We were told it would never affect him.

Between 18-24 mths regressed. Behavior went out the ceiling, stims

started, he stopped

sleeping at night and he stopped speaking. We worked with Dr Brenner

for a while.

While he did all the blood tests needed, he had no idea how to interpret

them. We were shoving

megadoses of vitamins and supplements into . With no affect. When

Dr Brenner started

to push secretin and transfer factor (along with another unfortunate

incident in his office) we

decided it was time to leave.

was first put on Famvir. That did so-so with him. Valtrex has

always been the antiviral for him.

Valtrex made his eyes brighter. I remember him looking out the car

window and indicating that

he saw a tree.The antifungal came next. The SSRI wasn't started until

the following year.

was in a home based ABA program. His sleep pattern was way off.

SSRIs regulate the serotonin which indirectly help melatonin. After

starting with an SSRI, finally started sleeping thru the night.

We'd been following the GFCF diet since he was 3 so we just decided to

keep him on it. Effexor XR, Adderol, Tenex and Wellbutrin SR have all

been added over the years based on the NeuroSPECT scans done on

and what we report back to Dr G. If you ask Dr G, he'll tell you why

he's using certain meds. If you do a search on the

group, you'll see the various items of research many of us have

located and posted.

SSRIs have immune regulating properties. The Antivirals are safe. All

meds are monitored via monthly

blood sucks.

was recently moved from Celexa back to Paxil XR. Paxil has always

been our choice of SSRI

for him. But we understand why Dr G likes to 'stir the pot' sometimes.

is getting older and his

immune system is stabile. I've charted all of his blood sucks since day

1 in Excel and it's interesting

to see the progression. In the beginning 's lymph count was 3x the

norm. Today, it's normal.

His 95 panel allergy test used to be all over the place. Today, there

are < 10 on the watch list.

We've been able to add goat's milk back into his diet with no problems

(soy has become a problem).

As well as eggs.

What's like? He still has speech delays and his social skills

aren't there. But now that he's been

placed at Kennedy Krieger, things are looking brighter and more

positive. He's a whiz

at Math and loves anything electronic. His eyes are clear, he sleeps

thru the night and he looks

healthy. He has problems modulating his emotions and his attention can

be hit/miss

but he's a very smart kid with his own agenda.

Some of us 'old-timers' thought it was time to jump start the parent

group. Gayle and

have taken the lead. We need ideas but most especially parents. A

Parent Group can't be

a group without parents. We need to move to the foreground. We

need to be able

to say to the communities 'HELLO! Are you people ready to start reading

the research you've

been conducting all these years?' I think it's ok to send Gayle your

ideas and support :-)

Doris

land

[Guest guest]

I think that the most effective parent support group is going to be the one

that has stories of 'recovery', i.e. the kids who are indistinguishable from

their peers after being on the protocol.

Thoughts?

Kristy

From: [mailto: ] On Behalf Of Doris

and Steve

Sent: Friday, July 04, 2008 9:51 PM

Subject: parent board, our experience and meds

My son, (12), has been a patient of Dr G's since 1999. We live in

sville, MD.

We heard about Dr G at a local ABA support group mtg (FIAT). Hemry

came

one night to speak to the group about his three children, and this

Dr Goldberg.

At that time, Dr G was visiting Bethesda every 3-5 mths. We always

believe that there was

an immune connection associated with 's condition (dx'd as

PDD/NOS). My husband

had GBS when was 6 mths old. We were told it would never affect him.

Between 18-24 mths regressed. Behavior went out the ceiling, stims

started, he stopped

sleeping at night and he stopped speaking. We worked with Dr Brenner

for a while.

While he did all the blood tests needed, he had no idea how to interpret

them. We were shoving

megadoses of vitamins and supplements into . With no affect. When

Dr Brenner started

to push secretin and transfer factor (along with another unfortunate

incident in his office) we

decided it was time to leave.

was first put on Famvir. That did so-so with him. Valtrex has

always been the antiviral for him.

Valtrex made his eyes brighter. I remember him looking out the car

window and indicating that

he saw a tree.The antifungal came next. The SSRI wasn't started until

the following year.

was in a home based ABA program. His sleep pattern was way off.

SSRIs regulate the serotonin which indirectly help melatonin. After

starting with an SSRI, finally started sleeping thru the night.

We'd been following the GFCF diet since he was 3 so we just decided to

keep him on it. Effexor XR, Adderol, Tenex and Wellbutrin SR have all

been added over the years based on the NeuroSPECT scans done on

and what we report back to Dr G. If you ask Dr G, he'll tell you why

he's using certain meds. If you do a search on the

group, you'll see the various items of research many of us have

located and posted.

SSRIs have immune regulating properties. The Antivirals are safe. All

meds are monitored via monthly

blood sucks.

was recently moved from Celexa back to Paxil XR. Paxil has always

been our choice of SSRI

for him. But we understand why Dr G likes to 'stir the pot' sometimes.

is getting older and his

immune system is stabile. I've charted all of his blood sucks since day

1 in Excel and it's interesting

to see the progression. In the beginning 's lymph count was 3x the

norm. Today, it's normal.

His 95 panel allergy test used to be all over the place. Today, there

are < 10 on the watch list.

We've been able to add goat's milk back into his diet with no problems

(soy has become a problem).

As well as eggs.

What's like? He still has speech delays and his social skills

aren't there. But now that he's been

placed at Kennedy Krieger, things are looking brighter and more

positive. He's a whiz

at Math and loves anything electronic. His eyes are clear, he sleeps

thru the night and he looks

healthy. He has problems modulating his emotions and his attention can

be hit/miss

but he's a very smart kid with his own agenda.

Some of us 'old-timers' thought it was time to jump start the parent

group. Gayle and

have taken the lead. We need ideas but most especially parents. A

Parent Group can't be

a group without parents. We need to move to the foreground. We

need to be able

to say to the communities 'HELLO! Are you people ready to start reading

the research you've

been conducting all these years?' I think it's ok to send Gayle your

ideas and support :-)

Doris

land

[Guest guest]

I agree. There has to be a few full recoveries in order to be truly

effective.

Cheryl

On Jul 5, 2008, at 7:23 PM, Kristy Nardini wrote:

> I think that the most effective parent support group is going to be

> the one

> that has stories of 'recovery', i.e. the kids who are

> indistinguishable from

> their peers after being on the protocol.

>

> Thoughts?

>

> Kristy

>

> From: [mailto: ] On Behalf

> Of Doris

> and Steve

> Sent: Friday, July 04, 2008 9:51 PM

>

> Subject: parent board, our experience and meds

>

> My son, (12), has been a patient of Dr G's since 1999. We

> live in

> sville, MD.

> We heard about Dr G at a local ABA support group mtg (FIAT).

> Hemry

> came

> one night to speak to the group about his three children, and

> this

> Dr Goldberg.

> At that time, Dr G was visiting Bethesda every 3-5 mths. We always

> believe that there was

> an immune connection associated with 's condition (dx'd as

> PDD/NOS). My husband

> had GBS when was 6 mths old. We were told it would never

> affect him.

> Between 18-24 mths regressed. Behavior went out the ceiling,

> stims

> started, he stopped

> sleeping at night and he stopped speaking. We worked with Dr Brenner

> for a while.

> While he did all the blood tests needed, he had no idea how to

> interpret

> them. We were shoving

> megadoses of vitamins and supplements into . With no affect. When

> Dr Brenner started

> to push secretin and transfer factor (along with another unfortunate

> incident in his office) we

> decided it was time to leave.

>

> was first put on Famvir. That did so-so with him. Valtrex has

> always been the antiviral for him.

> Valtrex made his eyes brighter. I remember him looking out the car

> window and indicating that

> he saw a tree.The antifungal came next. The SSRI wasn't started until

> the following year.

> was in a home based ABA program. His sleep pattern was way off.

> SSRIs regulate the serotonin which indirectly help melatonin. After

> starting with an SSRI, finally started sleeping thru the night.

> We'd been following the GFCF diet since he was 3 so we just decided to

> keep him on it. Effexor XR, Adderol, Tenex and Wellbutrin SR have all

> been added over the years based on the NeuroSPECT scans done on

> and what we report back to Dr G. If you ask Dr G, he'll tell you why

> he's using certain meds. If you do a search on the

> group, you'll see the various items of research many of us have

> located and posted.

> SSRIs have immune regulating properties. The Antivirals are safe. All

> meds are monitored via monthly

> blood sucks.

>

> was recently moved from Celexa back to Paxil XR. Paxil has

> always

> been our choice of SSRI

> for him. But we understand why Dr G likes to 'stir the pot' sometimes.

> is getting older and his

> immune system is stabile. I've charted all of his blood sucks since

> day

> 1 in Excel and it's interesting

> to see the progression. In the beginning 's lymph count was 3x

> the

> norm. Today, it's normal.

> His 95 panel allergy test used to be all over the place. Today, there

> are < 10 on the watch list.

> We've been able to add goat's milk back into his diet with no problems

> (soy has become a problem).

> As well as eggs.

> What's like? He still has speech delays and his social skills

> aren't there. But now that he's been

> placed at Kennedy Krieger, things are looking brighter and more

> positive. He's a whiz

> at Math and loves anything electronic. His eyes are clear, he sleeps

> thru the night and he looks

> healthy. He has problems modulating his emotions and his attention can

> be hit/miss

> but he's a very smart kid with his own agenda.

>

> Some of us 'old-timers' thought it was time to jump start the parent

> group. Gayle and

> have taken the lead. We need ideas but most especially parents. A

> Parent Group can't be

> a group without parents. We need to move to the foreground. We

> need to be able

> to say to the communities 'HELLO! Are you people ready to start

> reading

> the research you've

> been conducting all these years?' I think it's ok to send Gayle your

> ideas and support :-)

>

> Doris

> land

>

>