Nids vs. Dan

[Guest guest]

I really like that book, too. It really helps physicians and parents

get a better understanding of what's going on biomedically and I'm

hearing a lot of good things from parents that have given this book

to their peds.

cheryl

On Oct 24, 2007, at 10:02 AM, Palmer, F wrote:

> Nicely said,

> I too have been at this for some time. The old " either or " " this or

> that " idea " vrs DAN " issue is a non-sequitur at this point in

> time. There is considerable overlap and the science behind each has

> grown tremendously over the last 5 years - to me the distinction is

> uneceesary. The bottom line remians: There are some very good and

> dedicated physicians doing incredible work and helping an aweful

> lot of kids now. The kicker is that no one knows which autism

> phenotyes respond to any one specific medical treatment. Some kids

> dont respond to anything and others respond well with some kind of

> treatment. While there are many anecdotal sucesses with varaious

> treatment forms, we just dont know what works for who - yet. We do

> our best to find good behavioral and support services such as ABA,

> speech and language, pay attention to diet issues, and attempt to

> correct biochemical abnormalities and pray for the best. I

> recommend a book by Jepson, MD. Changing the Course of

> Autism: A Scientific Approach for Parents and Physicians. It is a

> succinct and unbias account of the state-of-the-art in what we know

> about medical treatments.

> Best, Ray

>

> ________________________________

>

> From: on behalf of Robyn & Greg Coggins

> Sent: Wed 10/24/2007 11:38 AM

>

> Subject: Re: vs. DAN

>

> Whether you follow the DAN or protocol, I think everyone can

> agree that it is of utmost importance in any battle to never forget

> who and what the enemy is: the disease called autism and the

> mainstream medical community (and insurance companies) that refuses

> to acknowledge our children's medical issues.

>

> We are all on the same journey; we're just choosing different paths

> to reach our destination.

>

> Best of luck to all,

>

> Robyn

>

> Cheryl Lowrance <c.lowrance@... <mailto:c.lowrance%

> 40ca.rr.com> > wrote:

>

> On Oct 23, 2007, at 8:38 PM, Pam wrote:

>

> > I wonder why it is assumed that DAN doctors disagree with this.

> > It's exactly what they are saying. I've been following the research

> > for years.

> I think you misunderstand us because no one is saying that DAN

> disagrees with this at all. What we are saying is that they have

> been slow on the uptake and have different methods than because

> they follow a different line of research. DAN addresses it in a much

> different approach although some DAN's are now using antivirals and

> antifungals regularly, many are not and many don't really understand

> how to use it. If you doubt this try checking out the MB12Valtrex

> list and ask how many of them had problems getting their DANs on

> board and had to switch or convince their peds. If you're fortunate

> enough to see the Dr. Woellers of the world then yes, you are getting

> a doctor that is well versed in the immune condition and open to new

> practices but honestly, there are not that many of them (but I will

> say that more and more are coming on board). You following the

> research and Dr.'s following the research are two different things -

> us mom's research well! Much of what DAN does (until recently)

> has been to treat immune issues with metabolic treatments. So much

> of the protocol is based on the gut and while you're absolutely right

> that the gut plays an important role in the immune system, much of

> DAN emphasis goes towards placing the problems of the immune system

> on the gut itself whereas it's exactly the opposite in . And I

> think that's one of those things that can be argued either way pretty

> well when you look at all the different types of kids out there. My

> son has no gut issues (and you wouldn't believe how many people have

> told me that if my child has autism he has gut issues...) so there's

> no connection there but if you look at a child *with* gut issues,

> sure, a connection can certainly be made. Research and studies are

> much like anything else, they are dependent upon the person doing the

> research as to which direction it will go and which leads they will

> follow. Some will follow the gut lead and others won't and while

> things may look the same initially, they can take on a different

> appearance depending on where they follow the leads. And again, I'm

> not saying that all DAN's are gut related when it comes to immune

> issues, but *many* are. The chicken or the egg scenario is a huge

> component of any biomed protocol and figuring it out is a huge task.

>

> > I was attracted to this group because it was so similar to

> > what I had been learning through the DAN research. I find it

> > interesting that the general idea on this board is that DAN doctors

> > don't know that this is a neuroimmune problem, when that is exactly

> > what I learned from all of my DAN research.

>

> Again, that's not really true. It's not that anyone thinks they

> don't know, it's just two different methods that are very politically

> and " morally " (for lack of a better word) opposed. Arguments for

> either method can easily be applied to the other - they're certainly

> not novel arguments. DAN will say is only treating symptoms and

> the same can be said by of DAN. It's all rather pointless, in

> my opinion. It would be so much easier if they would just work

> together but that won't be happening anytime soon for various

> reasons. DAN's do know of the neuroimmune issues - to an extent -

> and again, they have different lines of thinking between and

> DAN. Dr. G spoke at a few DAN conferences over 10 years ago but they

> quickly parted ways when it wasn't accepted within the DAN community

> because it didn't fit into their " mold " of the current (for that

> time) treatments. I'm oversimplifying it, of course but that's what

> it boils down to - politics and egos. I think at the time (I can't

> remember anymore) Secretin was the flavor of the day. Nowadays, the

> more informed DAN's have a similar protocol for antivirals and

> antifungals so it's not surprising that you are seeing the

> similarities - it's because they are there!

>

> > Very interesting! I didn't mean to stir up a controversy--I'm

> > sorry! I didn't think there was actually a controversy here.

> There isn't any controversy. Really, I'd hate to see it turn into

> something like that. I get enough of it from all the other biomed

> lists, I don't think anyone here wants to make you feel that way

> about being on a list. You just have to understand that these

> are things that are generally taboo to talk about on other biomed

> lists because we get shot down and things turn ugly because most

> biomed lists don't want to hear *anything* about . When the

> topic is brought up it's very short lived and most of us have simply

> learned not to talk too much about it. I'm on *several* biomed lists

> and this is the only one where I can feel completely open about our

> protocol (it is a list dedicated to , after all so I should!). I

> know more about the DAN protocol than I'll ever need to know and I'm

> not even on it but no one wants to know that there are other

> options. Whenever the topic gets brought up on other lists you

> wouldn't believe the amount of private e-mails I get asking for more

> information and how many people don't feel like DAN is really right

> for them but they just didn't know anything else was out there.

> We're the redheaded step child of biomed! Actually, I should say

> we're the 2nd cousin twice removed from the redheaded stepchild since

> since most DAN people don't even consider biomed.

>

> > I think we are all on the same page.

> Same page, just different books.

>

> > Each child is unique and will respond a bit differently and needs

> > different things, but I never questioned that it is a neuroimmune

> > problem--a medical problem. That's a given. To me and to my DAN

> > doctor as well. This is a medical illness, and should be treated as

> > such. I think that is exactly what most GOOD CURRENT DAN docs would

> > say.

> Yes, *everyone* in all the protocols agrees that it's a medical issue

> and please don't feel that anyone believes otherwise. The best thing

> to remember is what we know we can *all* agree on is that each child

> is different and has different needs and to keep an open mind and to

> never say never.

>

> Cheryl

>

> > Blessings,

> > Pam

> > vs. DAN

> >

> > Pam,

> >

> > We survived the Autism diagnosis; but I thought we wouldn't. My

> > son, ,

> > was diagnosed when he was three. Back then the psychiatrist told us

> > the best

> > to hope for was that he would be running a computer in the basement

> > of some

> > company and not have to deal with people. This expert went on to

> > tell us

> > that most of these children end up in group homes or even worse,

> > prison. We

> > traveled across the country trying to find a doctor to help us. But

> > most

> > doctors did not even perform a cursory exam because they didn't

> > believe

> > children with Autism could get better. They had nothing for us, not

> > even

> > hope.

> >

> > When my son entered kindergarten at age 6, he was in the third

> > percentile

> > for speech. By that time we had been seeing Dr. Goldberg in

> > Tarzana, California for about a year. Most medical doctors are just

> > starting to accept what Dr. G has known for over twenty years.

> > Autism is

> > the result of a medical condition. It's pretty complicated, but the

> > way I

> > understand it, his immune system was out of control; it either

> > overreacted

> > or failed to work when it was supposed to.

> >

> > After Dr. G helped him medically, the real work started. There is

> > no magic

> > pill to help children with Autism. Trust me, we searched everywhere

> > for it.

> > We had to teach everything he missed while he was not really

> > with us.

> > It was like rehabilitating a stroke victim. By the third grade,

> my son

> > tested in the 85th percentile for speech and by 6th grade he no

> longer

> > received any assistance at school. But even then, he still wasn't

> > " normal. "

> >

> > Now things are different. Today drives, has friends, works

> at the

> > local movie theater this summer. He does all the things the doctors

> > told me

> > he would never do. This fall he started to study engineering at a

> > major

> > University. He earned a scholarship that cover half the costs

> > because of

> > his high academics, ACT scores and extracurricular activities. If

> > anyone

> > would have told me this was possible when he was little, I never

> > would have

> > believed them. He used to be so weird.

> >

> > You asked about the difference between the Dan Protocol and Dr. G.

> > When my

> > son was little, we first started with Sidney Baker who is the

> > primary author

> > of the Dan protocol. Although he helped my son, he did not take

> > things to

> > the degree that Dr. G does. He gave us many unnecessary

> > supplements. At

> > first I thought they were helping and kept taking some of them

> > even

> > while we were with Dr. G. However, eventually I realized they

> were not

> > doing anything and stopped them. Mega doses of anything can be

> > dangerous.

> >

> > Dr. Baker thought that autism is a result of a leaky gut. Dr. G he

> > believes that the gut problem is a secondary result of a bigger

> > issue, an

> > immune system that isn't working when it should or fires when it

> > shouldn't.

> > Dr. Goldberg uses only proven scientific methods of treating

> > children. He

> > would never take a risk with our kids. He only uses things he is

> > sure are

> > safe.

> >

> > Our children all have something in common. Their immune systems are

> > not

> > functioning properly. Kids like my son, , have shown that if

> their

> > medical problems can be corrected, they can lead normal lives. The

> > medications my son is taking help his immune system to function.

> > Unfortunately, these interventions are not yet a cure. If I stopped

> > his

> > medications, he would not be " normal " like he is now. But until the

> > big

> > cure comes along I will be happy with him leading a normal life.

> >

> > Marcia

> >

> >