Re: From the Office re: Tonight's Chat

[Guest guest]

I completely missed the chat last night so I have no transcripts to

post. Would anyone care to post what was discussed?

Cheryl

On Oct 21, 2008, at 5:46 PM, sarabia_christina wrote:

> Just a reminder:

>

> Dr. Goldberg will be joining the Chat tonight at around 6:30 pm PST.

>

> Thanks,

>

>

>

>

> ------------------------------------

>

> Responsibility for the content of this message lies strictly with

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

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s).

>

[Guest guest]

Hi Cheryl,

mthomas, who was managing the server for the chat last night, was trying to

email transcripts to me for the chat last night because I kept getting

disconnected and missed some of it.  I didn't get the emails, though.  Perhaps

if you know how to contact her, she may have them, at least in the 'sent'

items...

What I read was what I was most interested in I guess ... I asked about sleep

and about c.diff for a friend who's child has been treated by a DAN doc a couple

of times for c.diff. 

Re the sleep (the same child used to sleep 2-3 hrs a week, now has gone up to

2-3 hrs a night wow), he said that (and I may have missed more of what he said

unfortunately), is that as the health issues get worked out, the sleep comes. 

That has been the experience of many of the parents I've talked to or read over

the years.  What a horrible issue to deal with - our first year and a half w/my

youngest just about made me crazy, but at least he slept intermittently. 

Anyway, I didn't get to see his full response, but basically I think the

protocol itself addresses the sleep - maybe just not as fast as we want.  (He

didn't say that - I'm just adding it.)

Regarding the C.Diff - he got very heated about that topic.  I told him about

how the child has been treated twice for it - once w/flagyl and antifungals, and

after it came back (if I remember, maybe within a month?), he was treated again

w/antifungals and this time, Vancomycin.  (C.Diff is an anaerobic bacteria -

doesn't require oxygen to live, and requires antibiotics that kill anaerobics -

we don't have many to choose from. Vano is a wicked-mean drug, and any of you

grown-ups who have taken flagyl know how it wrecks your tummy - brutal.)  So

anyway the parents were concerned about having to put him thru another treatment

and I'd been telling them about . 

Anyway -  I was writing down word for word what he said before I got knocked

off:  I quote w/his emphasis:

" Unless the c.diff is at this point diagnosed by a Certified Pediatric

Gastroenterologist, this child is likely being subjected to VERY inappropriate,

Heavy medicines, without any real chance of helping. "

He also said re the sleep:  " Sleep cycles are part of what are abnormal in the

brain of your children, adn will NEVER be corrected by treating for bacterial

infections the child likely does NOT have " ... lost the rest here but he was

responding to the comment that when they had treated for 'c.diff', he started

sleeping more and I had questioned if maybe that wasn't the antifungals rather

than antibiotic - my experience and several others was that antifungals improved

sleep - another mom just told me that today re her son, although illness or

die-off will retrigger the sleep issues again so far.

He also said " To get " improvement " w/Flagyl or Vancomycin - our last good

antibiotics for serious HOSPITAL based infections ... but why should this

physician care about the jeopardy he is creating for many others - OR that he is

not going to maintain success with such an inappropriate or dangerous regimen. 

AND why should so many parents be allowed to sugject their children to this

extremely toxic and barbaric regimen.  This approach is HORRIBLE medicine. "

Another was:

" , basically as I have tried to point out, believe the majority of those

children did not likely have it (meaning c.diff) (like you've noted, NOT so easy

to really pick up) and personally NO parent should allow treatment like this

without confirmation by a certified pediatric GI. "   

He mentioned also the dangers of how so many kids are being treated

intermittently with the antifungals (and maybe the antivirals? I know that is

done and it is bad...).  The question was about Nystatin, and he was saying how

it's nowhere near strong enough, but because of the way docs are under-dosing

and on again off again on the antifungals, it's probably best that the worst

they're doing w/Nystatin is not addressing the problem and it's probably safer

that way, and I think he was addressing a mom's question as to whether or not

she should be trying to get Nystatin for her child prior to an upcoming appt

w/Dr G and it seemed like he was telling her not to bother, to just wait for the

appt.

I really appreciated his time.  I had anticipated his doubt re the DAN

diagnosis' of c.diff starting to happen so much with these kids .... the GI

tests they do, he has always stressed that they (the labs) do not stand up to

being able to replicate their data and give valid results - because first of

all, that's not even the nature of stool samples.  I keep hearing about all

these cases of c.diff but I've been on doxycycline for years now, and haven't

tested positive for c.diff yet - and it's one of those you're at a higher risk

of it with.

 He said he won't be at chat the first Tues of November due to the election, and

will probably try to have the November chat the following Tuesday.

I missed anything else that was said - maybe others could fill in the gaps.

HTH-

 

________________________________

From: cher.lowrance <cher.lowrance@...>

Sent: Wednesday, October 22, 2008 11:44:49 AM

Subject: Re: From the Office re: Tonight's Chat

I completely missed the chat last night so I have no transcripts to

post. Would anyone care to post what was discussed?

Cheryl

On Oct 21, 2008, at 5:46 PM, sarabia_christina wrote:

> Just a reminder:

>

> Dr. Goldberg will be joining the Chat tonight at around 6:30 pm PST.

>

> Thanks,

>

>

>

>

> ------------ --------- --------- ------

>

> Responsibility for the content of this message lies strictly with

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

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s) .

>