Success with

June 15, 2009

Hi,

From reading the posts, it seems as if almost everyone is a success story.

We've been doing DAN now for many years with little success. I'm wondering if

anyone has not had success with .

Thanks,

Steph

From: knardini@...

Date: Sun, 14 Jun 2009 22:08:11 -0700

Subject: RE: Hot/Cold

We all have hormones of all different kinds that can go 'haywire' or be out

of balance at any time, no matter our age or sex.

Kristy

From: [mailto: ] On Behalf Of Jerri

Gann

Sent: Sunday, June 14, 2009 8:54 PM

Subject: Re: Hot/Cold

Thanks that makes a lot of sense. I took him to the Dr. thinking

he had a urinary tract infection because he has to pee so often but they

tested him and found nothing but I bet he has a low grade infection they

aren't catching. I doubt hormones, he is 8? How do you get a

prescription for Cefzil without a definitive reason? Dr. G? I have been

making him drink a lot of fluids and he seems to be improving a little.

I just had a thought. I should give him cranberry juice. Thanks, Jerri

>

> When my son was in a CFIDS state, his temperature sense was

> dysregulated. Room temp bath water was hot, he was cold much of the

> time, but there was nothing specific causing these. It eventually

> went away.

> Once you've ruled out hormonal problems, I think you're probably

> dealing w/ other dysregulation. I can't remember what it's called,

> but it is common among the CFIDS group and has a name. Is it HPA

> axis? The first thing you have control over is the diet, and making

> sure it's clean during this time could help.

> This all started creeping up after he had stopped the protocol the

> first time. Nine months after stopping antivirals, something just

> seemed a little " off " and I was commenting on this to the

> pediatrician. Within 3 months after that, he was really starting to

> show symptoms including fatigue. He was sick for about 8 months, then

> spiked a 106.9 degree fever, and improved drastically after that for

> several months before starting to feel bad again. Once he regressed

> the second time, I got him back on meds.

> One thing you may be able to do is a trial round of antibiotics (I

> like Cefzil when there isn't something well-defined because it doesn't

> set things off) and see if 3-5 days into them you see a noticable

> improvement. We can have subtle low grade infections that drag us

> down and don't ever really manifest themselves, and this test often

> brings both of my kids out of whatever it is and we never know what

> the problem was.

> HTH-

>

> ________________________________

> From: Jerri Gann <njgann@... <mailto:njgann%40sti.net>

<mailto:njgann%40sti.net>>

> < <mailto:%40>

<mailto:%40>>

> Sent: Thursday, June 11, 2009 11:57:19 AM

> Subject: Hot/Cold

>

> I hope someone knows the answer here. My younger son (who is no longer a

> patient of Dr G) has not been feeling well for three weeks now. He has

> not become real sick but he says he can't get a comfortable temp. he is

> either too hot or too cold. He has not had a fever but sometimes feels

> warm. I remember Dr G. talking once about this hot and cold thing and I

> can't remember what he said. My younger son was with Dr G for a short

> while. We caught him quick and did ABA and he is doing great. He is very

> fragile though and when he doesn't feel well things fall apart rather

> quickly. They noticed a huge difference at school and the teacher and

> parents asked me what happened to him. He started the school year off

> great and had troubles at the end. I took him to a Dr. who said he

> thinks he is fighting off a virus, but this is going on for too long. He

> never gets very sick but I know that can be a problem too. Anyway, any

> input would be greatly appreciated. I don't know how we all can survive

> the constant worry. My older son (now 12) is full on into puberty and

> getting mean. He has always been a very loving, sweet child. His

> allergies are driving him nuts and from your emails I'm wondering if

> allegra could be a problem. Sometimes I think it's just puberty and he's

> becoming more " normal " The one email about the 16 year old who is now

> having tons of problems. I wondered if maybe it could be

> puberty/hormones? Anyway, I think part of my sons anger is rebelling

> against the constant worry I have. I try not to let him see it but I

> think he feels it. Sorry for the long post here. I hardly ever have time

> to respond. Thanks, Jerri

>

June 24, 2009

With respect from the posts I read I would not say that ''everyone is a

success story'' although some may disagree of course depending on their

interpretation of success but to me success means that my child functions

within

neurotypical boundaries including his physical health! The question you

are asking though regarding lack of success is certainly a fundamental one.

Dr Goldberg's theory in my humble view accurately describes what

occurred with two of my boys and although I think his treatment approach is an

innovative one it is still an evolving one and I would like to see more

concrete clinical data to support credibility.

In a message dated 24/06/2009 17:06:31 GMT Standard Time,

stephaniejbuckley@... writes:

Hi,

From reading the posts, it seems as if almost everyone is a success story.

We've been doing DAN now for many years with little success. I'm

wondering if anyone has not had success with .