ph update, rerun, chronical, recent visit

September 25, 2003

In a message dated 25/09/2003 07:52:40 GMT Daylight Time, amattson@...

writes:

> What do you guys think of that?

>

I think you tried to question Dr 'God' -berg and he didn;t have any answers

September 25, 2003

>>In fact, I said, the

Culturelle we recently switched to had done wonders for ph this

last 3 days, he's been on it two weeks now. I suggested stopping all

medications to give ph's kidneys and liver a chance to recoup, he

went ballistic, said to buy, then watch his 3 hour video. Said he

didn't have any more time for us, and if I wanted, I could do a phone

consult after I had watched the video. What do you guys think of that?

He is no longer willing to listen to you or help your child, UNLESS

you change your position and believe everything he says and agree to

do it. A good indicator to stop seeing him.

Dana

September 25, 2003

It does sound as though you are at the end of what he can do for

ph with this doctor. And the doctor is saying that too because

he is not even listening to what you are telling him and how ph

is responding.

Some people can't seem to choke out the words:

I - was - wrong

or

I - don't - know

so it seems this is his way of saying those things. If

he 'advertised' 4-6 months for a 'cure' and now confesses it really

is just an idea in his head...not even got the funding for it...it

would be time to move along. He is not being entirely truthful about

the situation.

One of the things I thought was very remarkable about my neurologist

was that in the first meeting she said,'I will probably be able to

help you achieve about 50% improvement, hopefully more, and I can

help you will certain things. But the rest you will need to see

someone else or try on your own.' And that is what happened. She was

quite honest and straightforward.

.

September 25, 2003

,

I think you're an awesome Mom and he isn't a very good doctor. That's what

I think of that! I am also very grateful that you are sharing your

experiences with him with all of us b/c in doing so you are saving many

parents allot of money, heartache and valuable time they could spend

elsewhere helping their child get better. KIM

ph update, rerun, chronical, recent visit

> RERUN, for anyone who doesn't know us, but is curious. My son is currently

being treated for a virus, yeast/fungal issue. My son was misdiagnosed

Celiac's and was diagnosed with IgA deficiency ( complete deficient) and

Autism, moderate to severe. Like many parents out there we did the initial

" what's wrong, chronic diarrhea, he's in his own little world, he stims

instead of plays, he's not antisocial angry, just antisocial overwhelmed by

all the sensory stimuli in his life, doesn't make eye contact, or won't

sustain eye contact, dropped off the scale of what was normal development,

etc.

> Dr. Goldberg entered the picture when I became frustrated by my inability

to convince the Doctors out there that my son had some underlying yeast,

bacterial or fungal issue. My son was doing great, improving on probiotics,

Ojibwa tea, and enzymes, but we had this rollercoaster ride with yeast flare

ups, and for every two steps forward in development, we'd take one step

back. So anyway, we've currently identified a definite fungal and viral

issue at work in ph, per some labs Dr. Goldberg ran for us.

> Here's the deal, back in May of this year, for our first visit, we were

promised a " cure " for our son, within a four to six month time frame. Dr.

Goldberg was very familiar with all my parental observations, and said " if

your son has, what I think or believe him to have, I can cure him " . ph

did have the fungal and viral issue Dr. Goldberg believed to be at work.

Trouble is, Dr. Goldberg's idea of " cure " is continuous drug treatment. I

allowed the antiviral med. Valtrex, because according to the literature of

the main active ingredient, Valtrex is only activated when it encounters

cells carrying this virus, otherwise it just bumps along, and on it's way

out via the kidneys/urine. The remaining obsessive compulsive issues, that

we had " learned " to work around completely disappeared. We were thrilled, as

these things made him stand out socially. His motor skills improved to the

degree he can accurately throw a ball and hit a ball with a bat. He zooms

around the block on his bike, whereas before he puttered along. Then came

the Nizoral to treat the fungal issue. I was less than thrilled, and ph

has been sick twice since being on it. Dr. Goldberg feels we've yet to get

an accurate idea as to whether or not ph is responding to the Nizoral

due to the two illnesses.

> The kicker is, the last visit in August, Dr. Goldberg explained the next

step was an SSRI. Now, ph does not need one for depression, behavior,

energy, sleep, etc. All the reasons they are normally prescribed for in

adults. I refused. This took him aback. He stated the reason was to make

serotonin more available to ph's brain, and then quickly passed me off

to his nurses. Boy, did I grill them. I know SSRI's are often taken for a

minimum of a year, otherwise the individual will lapse into a state worse

than the one they were in prior to treatment. So what happened to our " cure "

in four to six months? No one had any answers. So we left, continued the

Nizoral and the Valtrex. ph develops a sinus infection shortly after

that visit. During the course of his treatment of antibiotics he has a

breakthrough, and I have a conversation with him that I have been waiting to

have his whole short life. The breakthrough ended after two and 1/2 days.

Then he regressed to a point that I've not seen since before the enzymes. I

think it's a bad yeast flare up. We still aren't back to " normal " . So I

spend the next month learning all I can on serotonin and SSRI's. We had our

visit with Dr. Goldberg yesterday. I wanted to know where our breakthrough

went, he said he didn't know. I wanted to know why the labs indicate

ph's viral issue hasn't changed one bit since we've started the meds. He

said in some kids it takes a year. I asked why ph's potassium level was

high, he said it had nothing to do with his kidneys, just a tainted blood

draw. I briefly explained our desire to find natural means of making

serotonin more available to ph, not via SSRI's, he said the " natural "

methods were more toxic than any medication because they aren't a " pure "

product. I stated that I could not find a single long-term study done on

children taking SSRI's, he said that was true, but again stated that SSRI's

are safer than any vitamin or " natural " remedy on the market. I said that

sounded absolutely absurd. He got very loud, (according to my husband who is

a cop, and therefore reads body language for a living, said Dr. Goldberg's

body posture became very aggressive) and proceeded to inform me that SSRI's

are so safe that they are approved for pregnant women. I told him I'd have

to look into that, but that he hadn't convinced me that SSRI's are necessary

for my son. He then tried to imply that I was damaging my son by wasting

time arguing about a medication that could only help him. I asked him where

my " cure " in four to six months went, and he proceeded to lament his lack of

funding that would produce this " cure " . I reasserted my disliking Nizoral,

and the lack of improvement. In fact, I said, the Culturelle we recently

switched to had done wonders for ph this last 3 days, he's been on it

two weeks now. I suggested stopping all medications to give ph's kidneys

and liver a chance to recoup, he went ballistic, said to buy, then watch his

3 hour video. Said he didn't have any more time for us, and if I wanted, I

could do a phone consult after I had watched the video. What do you guys

think of that?

>

September 25, 2003

<<I stated that I could not find a single long-term study done on

children taking SSRI's, he said that was true, but again stated that

SSRI's are safer than any vitamin or " natural " remedy on the market.

I said that sounded absolutely absurd. He got very loud, (according

to my husband who is a cop, and therefore reads body language for a

living, said Dr. Goldberg's body posture became very aggressive) and

proceeded to inform me that SSRI's are so safe that they are approved

for pregnant women. I told him I'd have to look into that, but that

he hadn't convinced me that SSRI's are necessary for my son. He then

tried to imply that I was damaging my son by wasting time arguing

about a medication that could only help him. I asked him where

my " cure " in four to six months went, and he proceeded to lament his

lack of funding that would produce this " cure " .

What do you guys think of that?>>

I think this doctor sounds extremely arrogant. I think he is trying

to prove his theory for his own benefit rather than the benefit of

your son. I think he is prescibing the same protocol for each

patient without taking into account their individual needs.

By the way, my son had a bad reaction to Prozac, and it set him back

for months, so while they may be relatively safe there is a potential

downside, they are powerful medications.

I agree that you are an awesome mom and are doing a great job for

your son, and I am so sorry that you have been treated this way and

are feeling so discouraged.

have you ever read or posted on the list? I am not a

member but I wonder if there are other parents on there who might be

able to help you sort out what you want to do next. Hang in there,

Lynne

September 26, 2003

ph didn't look so well tonight after the Nizoral dose. I'm stopping that.

I've had it, I need to listen to my gut. Too many family distractions, and

ph has gotten short shrift. I'll stick with the Valtrex for a short while

longer, but then I think I may just go back to the Ojibwa Tea. Thank you so much

for responding. Yes, " cure " is a dangerous word, and because everyone prior to

him was so careful to avoid it, I felt sure he'd never use it and not mean it.

We're on the right track, the problem is profit and pharmacology. I apologize

for the spelling, but I'm sure you know what I mean. Hi Ho Hi Ho, it's off to

read I go.

Re: ph update, rerun, chronical, recent visit

If it were me, I'd feel like you and I wouldn't want my child on the

ssri or the nizoral... I would find another doc that would be willing

to continue the valtrex and I would stick with that.

If Goldberg indeed used the word cure, and I have no reason to doubt

you, then that is wrong. No one should be promising a patient/family

a " cure " . And no one should be promising or even indicating a

timeline. That only sets people up for disapointment and he should

know that by now.

Did you ever try lauricidin? I feel that is helping Ethan's

bacterial issue.

W

> RERUN, for anyone who doesn't know us, but is curious.

September 26, 2003

Actually, I've not joined any other lists. Perhaps it's time I did. I'd hate to

go through Dr. Goldberg's website to find one, do you have a site in mind? Thank

so much for responding.