parent board, our experience and meds

[Guest guest]

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