Re: DAN Dr in Central NJ

November 1, 2007

Dr. Neubrander is in Edison and Dr. Freedenfeld is in Flemington. I

can't make any personal recommendations for either. Casein, if an

issue, could take month for the changes to help. Gluten could take 6

months, maybe longer. A probiotic could take a month. If you have

other issues unrecognized like long term malabsorption, metal, etc.

it could take longer and you could need more help. A DAN is only one

of the docs who may be able to help you. A GI is a good place to

start as well. A nutritionist would also be helpful. I took no

chances and went to all three. I have long given up on the hope of

just one doctor giving me the answers. This thing is complicated. I

wish you well.

>

> Can anyone recommend a DAN doctor in Central NJ? We live in

Metuchen,

> nj? My son definitely has gut and BM issues. He has severe apraxia

and

> borderline ASD (dev ped says he has symptons). The gut and bm

issues

> all started when we started carnitine. I've tried to reduce and

stop

> and wait and retry but his stomach is a mess. He constantly

complains

> that his belly hurts and he can't sleep becz of it. We're trying

> probiotics and just started a casein/gluten free diet (to help with

ASD

> symptons) but he still has abnormal (very very soft) BM's and only

> every 3-4 days. Could a DAN doctor help with this?

>

> Can't stand to see him suffer anymore and the sleepless nights?

Thanks

> for any help.

>

November 2, 2007

We just started seeing Dr. Freedenfeld, and so far, so good. He

suggested carnitine for Tyler, so he should be knowledgeable about

its effects, positive and negative. He is actually in Stockton, not

Flemington. It's right by the Delaware River one town north of

Lambertville, NJ, about 25 minutes from the Princeton area, if that

helps.

in NJ

> >

> > Can anyone recommend a DAN doctor in Central NJ? We live in

> Metuchen,

> > nj? My son definitely has gut and BM issues. He has severe

apraxia

> and

> > borderline ASD (dev ped says he has symptons). The gut and bm

> issues

> > all started when we started carnitine. I've tried to reduce and

> stop

> > and wait and retry but his stomach is a mess. He constantly

> complains

> > that his belly hurts and he can't sleep becz of it. We're trying

> > probiotics and just started a casein/gluten free diet (to help

with

> ASD

> > symptons) but he still has abnormal (very very soft) BM's and

only

> > every 3-4 days. Could a DAN doctor help with this?

> >

> > Can't stand to see him suffer anymore and the sleepless nights?

> Thanks

> > for any help.

> >

>

November 5, 2007

I had called Dr. Neubrander and spoke in depth with Mr. Neubrander,

his brother. I was left with more questions than answers.

First: The theory is that autism is a treatable disease or disorder

not caused by genetics. OK fine, sounds logical - where is the

research? Well they claim to have 110 happy parents on this

injection of B12 but it's not based on any placebo trial nor have

they done any work on kids without Autism so how do you know the

dose, treatment course and level needed to reach the max potential.

No half life, no steady state, no better outcomes than the normal 30%

(which you could do with other therapies to help 'treat' symptoms.

Second: Cost. They don't take insurance, they charge an exsorbant

amount of money per office visit (with a PA no less) and then you

still need to pay for blood work to determine things like allergies,

toxins etc. It was $375 per first treatment office visit followed by

$225 once on a particular treatment. Well out of my range of

affordable.

Third: They assume all kids were vaccinated and have not had any or

many children treated that did not have any vaccines.

Forth: Based on Mr. Neubrander - his brother is an enviromnetal

physician - which I have never heard of (and worked in clinical trial

for nearly 20 yrs). He wanted to know if my son's stomach was

bloated because that would " indicate a yeast infection " . I reminded

him that my son had bowel/sensory issues and of course was not

completely potty trained. Any bulge could be constipation and unless

a lab could detect yeast I was not sure I understood how he could

come to that conclusion. I mean any bowel issues can cause a child

to look 'pregnant' including Krohn's.

So if you have gone and had good luck - let us know what worked but

if you can just go to the store, buy probiotics and MB12 why not

start that yourself and save the money.

November 5, 2007

April,

Maybe it is just because we are both from Jersey but I smelled a rat

too. I really felt like I was getting a sales pitch. Mr. Neubrander,

not a doc, was diagnosing my kid, prescribing HBOT, and we were on

the phone for goodness sakes. My son has been mild from the beginning

and may very well be apraxic-like and not actually apraxic. That is

where the therapists and I are at and the doctors find him to be a

late talker and say they do not know why. I do want to speak to your

points in an efort to share and request info. from you and others so

here goes:

1) I think autism and all this stuff is treatable. My question is,

can it be done safely. I ask my question that with any and everything

I do, from diets, to vitamins to baths, the only things I have done

and seen benefits in each and have not overdone any of it. I think in

some cases there is a genetic component and to ignore that and not

treat the child in front of you is dangerous. A kid with a genetic

thing plus or minus and environmemtal component may have different

needs and restrictions in treatment that needs to be acknowledged and

factored into a treatment plan.

2) I have seen the MB12 recovery videos on his site. My kids may have

an MB12 issue but the recoveries look like the before versions of my

kids. Perhaps they were previously worse off. I can't know that.

3) The costs at his office seem inaccessible to most and don't jive

with the mission of helping.

4) That vaccine assumption is again dangerous.

5) I have heard the term environmental physician before, specifically

in reference to an allergist. I think there is a legitimate

certification for this and I think you might see or hear of it more

in the world of Occupational Safety and Health. Now whether

Neubrander's certification exists, is the same as that, etc. I have

no idea.

Lastly, can you tell me what you know about MB12? I think we have a

legitimate issue. I think injection may be warranted given dietary

restriction. I fear excess may overburden organs. How would one do it

themselves anyway? Do not fear answering that...I investigate fully,

my husband is a scientist and MB12 is not something I'd run out and

do based on a post. I am still afraid of fish oil, remember.

>

> I had called Dr. Neubrander and spoke in depth with Mr. Neubrander,

> his brother. I was left with more questions than answers.

>

> First: The theory is that autism is a treatable disease or

disorder

> not caused by genetics. OK fine, sounds logical - where is the

> research? Well they claim to have 110 happy parents on this

> injection of B12 but it's not based on any placebo trial nor have

> they done any work on kids without Autism so how do you know the

> dose, treatment course and level needed to reach the max

potential.

> No half life, no steady state, no better outcomes than the normal

30%

> (which you could do with other therapies to help 'treat' symptoms.

>

> Second: Cost. They don't take insurance, they charge an exsorbant

> amount of money per office visit (with a PA no less) and then you

> still need to pay for blood work to determine things like

allergies,

> toxins etc. It was $375 per first treatment office visit followed

by

> $225 once on a particular treatment. Well out of my range of

> affordable.

>

> Third: They assume all kids were vaccinated and have not had any

or

> many children treated that did not have any vaccines.

>

> Forth: Based on Mr. Neubrander - his brother is an enviromnetal

> physician - which I have never heard of (and worked in clinical

trial

> for nearly 20 yrs). He wanted to know if my son's stomach was

> bloated because that would " indicate a yeast infection " . I

reminded

> him that my son had bowel/sensory issues and of course was not

> completely potty trained. Any bulge could be constipation and

unless

> a lab could detect yeast I was not sure I understood how he could

> come to that conclusion. I mean any bowel issues can cause a child

> to look 'pregnant' including Krohn's.

>

> So if you have gone and had good luck - let us know what worked but

> if you can just go to the store, buy probiotics and MB12 why not

> start that yourself and save the money.

>

November 6, 2007

Hey if you are close to Edison come over for a playdate sometime!

I would love to surround myself with well educated Moms. We use the

Omega Nordic kind and I do believe in moderation for stuff but I

would not live on cod liver oil or anything else for that matter.

I began the probiotics for the potty training issues and I can let

you know how that turns out by Dec. The tabs for MB12 are horrible

tasting and without knowing what normal levels should be I am not

sure how anyone can determine where to start off! We started at 1000

mg.

And I guess I was not convinced enough information is understood

about how to treat Autism really and until doctors get sponsored to

test these theories it is more like a shot in the dark. One of my

main objections is the injections! We are morally opposed to them

(oursleves) and I am not going to place even a natural form of

vitamin into my child's body - that should be taken naturally. It

would be different if the child was diabetic and needed insulin based

on blood work. You would have to cave in.

April in Piscataway

November 6, 2007

I am not sure how educated I am but I am not far (20 min). I have to

get my bearings around a few things (potty training is one, diet is

another and the darn multi search) but I think a playdate would be

great.

I am with you on the not enough is understood. I do think more is

understood than we hear about but what particularly disturbs me about

my Neubrander phone call is that it appears to me he has become a

rock star of sorts in the DAN community and got so big that he seems

to have pat treatments and is not looking too hard at the kid in

front of him. I can get that at the pediatrician and insurance will

cover it. Our DAN is actually a family practitioner with an autistic

child. The conversation I had with him was long, he really listened.

He goes to conferences for the info. but is not blindly following. He

seems averse to less tested stuff and really tries to see what is in

front of him. He may not be able to declare his kid healed but I

think he has been safe in trying to help him and I believe there is

still hope. There are other DANs doing new things but caustiously.

Some of the big players like Usman, have even written to parents

saying things like " we are still working on this. " That is a

researcher trying to do right by her patients. The parent/docs who

have a child with something going on are the ones who appeal to me

most.

>

> Hey if you are close to Edison come over for a playdate sometime!

>

> I would love to surround myself with well educated Moms. We use

the

> Omega Nordic kind and I do believe in moderation for stuff but I

> would not live on cod liver oil or anything else for that matter.

>

> I began the probiotics for the potty training issues and I can let

> you know how that turns out by Dec. The tabs for MB12 are horrible

> tasting and without knowing what normal levels should be I am not

> sure how anyone can determine where to start off! We started at

1000

> mg.

>

> And I guess I was not convinced enough information is understood

> about how to treat Autism really and until doctors get sponsored to

> test these theories it is more like a shot in the dark. One of my

> main objections is the injections! We are morally opposed to them

> (oursleves) and I am not going to place even a natural form of

> vitamin into my child's body - that should be taken naturally. It

> would be different if the child was diabetic and needed insulin

based

> on blood work. You would have to cave in.

>

> April in Piscataway

>

November 6, 2007

Amazing.

That is how I will begin to describe my experience with Dr.

Neubrander's office. Amazing.

My son was severely apraxic. He was diagnosed by a Speech Therapist

well versed in Apraxia. He made minor gains with intensive (4 30

minute ST sessions a week) until we began biomedical interventions.

We then saw a large burst of progress with a DAN physician in NY but

he continued to struggle. Then, we switched to Dr. Neubrander in

late 2005.

This switch was a life altering event. My son no longer meets the

criteria for Apraxia--not even close. His bowel issues are

resolving. He is growing more social every day. He is in typical

Kindergarten. HE has conversations with us! He jokes! I can say I

feel 100% that we would not be where we are without Dr. Neubrander's

office--and that includes the Mr. Neubrander referred to recently on

this board.

I do not want to argue with anyone but must tell my experience as I

hope others can benefit from it. The entire Neubrander practice--

both Mr. Neubrander and Dr. Neubrander in particular--have been kind,

knowledgeable and caring beyond words. They don't merely do this for

a living--it is truly their passion. Anyone who knows them says this-

-I could name DOZENS of people that i know personally who would

agree.

TO address a few things cited:

$$$$$$$$$$$$--thier prices are not exorbitent. I am not wealthy but

we have made many financial sacrifices to help our son. When you

factor in those prices are for by the hour costs (vs. say 15 minutes

with a PCP), factor in office staff, rent, licensing fees, etc. you

will see they make less profit than many professionals I know.

Truly. Ask yourself what you or your spouse is paid hourly and then

remember to subtract all that overhead.

Same results on your own? Everyone must do what they feel is best.

We all love our kids. But I personally do not know anyone who got

good results doing bioemd on their own and again as aparent I say the

clock is ticking. Life does not stop for us to help our children

catch up. Nor does age.

What's wprked best biomedically for us? MB12 shots. mild HBOT.

antiinflammatories. fish oil in high does. Glutathione. All

monitored closely by Dr. Neubrander and his staff.

So in closing I reiterate that I feel truly blessed to know and work

with both Neubrander Gentlemen--and I feel the role they play in my

son's life and my family's life has been AMAZING.

Kathleen

>

> I had called Dr. Neubrander and spoke in depth with Mr. Neubrander,

> his brother. I was left with more questions than answers.

>

> First: The theory is that autism is a treatable disease or

disorder

> not caused by genetics. OK fine, sounds logical - where is the

> research? Well they claim to have 110 happy parents on this

> injection of B12 but it's not based on any placebo trial nor have

> they done any work on kids without Autism so how do you know the

> dose, treatment course and level needed to reach the max

potential.

> No half life, no steady state, no better outcomes than the normal

30%

> (which you could do with other therapies to help 'treat' symptoms.

>

> Second: Cost. They don't take insurance, they charge an exsorbant

> amount of money per office visit (with a PA no less) and then you

> still need to pay for blood work to determine things like

allergies,

> toxins etc. It was $375 per first treatment office visit followed

by

> $225 once on a particular treatment. Well out of my range of

> affordable.

>

> Third: They assume all kids were vaccinated and have not had any

or

> many children treated that did not have any vaccines.

>

> Forth: Based on Mr. Neubrander - his brother is an enviromnetal

> physician - which I have never heard of (and worked in clinical

trial

> for nearly 20 yrs). He wanted to know if my son's stomach was

> bloated because that would " indicate a yeast infection " . I

reminded

> him that my son had bowel/sensory issues and of course was not

> completely potty trained. Any bulge could be constipation and

unless

> a lab could detect yeast I was not sure I understood how he could

> come to that conclusion. I mean any bowel issues can cause a child

> to look 'pregnant' including Krohn's.

>

> So if you have gone and had good luck - let us know what worked but

> if you can just go to the store, buy probiotics and MB12 why not

> start that yourself and save the money.

>

November 6, 2007

I'm sorry but you are wrong. Yes--wrong. You do not know Dr.

Neubrander and it is unfair for you to post he uses " pat " treatments

and is no longer researching. Both are untrue.

Please be careful what you say about someone you do not know.

The reason he is so well known in DAN is the amount of time he spends

researching.

I am sorry to be so harsh but when you have seen your entire life

turned around for the better and know that one man was so

instrumental in that it is hard to see someone be so negative about

him who has never met him or spoken with him (even).

Kathleen

> >

> > Hey if you are close to Edison come over for a playdate sometime!

> >

> > I would love to surround myself with well educated Moms. We use

> the

> > Omega Nordic kind and I do believe in moderation for stuff but I

> > would not live on cod liver oil or anything else for that matter.

> >

> > I began the probiotics for the potty training issues and I can

let

> > you know how that turns out by Dec. The tabs for MB12 are

horrible

> > tasting and without knowing what normal levels should be I am not

> > sure how anyone can determine where to start off! We started at

> 1000

> > mg.

> >

> > And I guess I was not convinced enough information is understood

> > about how to treat Autism really and until doctors get sponsored

to

> > test these theories it is more like a shot in the dark. One of

my

> > main objections is the injections! We are morally opposed to

them

> > (oursleves) and I am not going to place even a natural form of

> > vitamin into my child's body - that should be taken naturally.

It

> > would be different if the child was diabetic and needed insulin

> based

> > on blood work. You would have to cave in.

> >

> > April in Piscataway

> >

>

November 6, 2007

No - I am really glad you wrote, in fact, and would not consider this

to be some arguement or anything. This board is for safe sharing. And

on a phone call you cannot really get a feel for it. I would never

write someone off completely and I am so happy to hear you had great

results. It's like meeting someone off the commercials for weight loss

or match maker! (a friend of ours met his dream woman on EHarmony and

we were shocked!).

The office fee is out of our price range sadly and we don't believe in

the injections but they did offer dermal therapy for couples like us so

that was a consideration.

What does this doctor have an actual degree in? Internal medicine or

allergy? It was hard to determine. I know he has a website.

April

November 6, 2007

Who do you use and recommend? I am not sure any will be on our

insurance but it's worth a shot.

OK if anyone is in NJ and would like to have a Special Us Moms

Playdate - I will post soon.

November 6, 2007

I am glad you had a good experience. I will be spending a lot in the

end, just on the right therapy for my kids. In some ways I think

Neubrander and the like are better suited for the seriously injured

kids. My fear would be him not treating my kid in front of him, aside

from the rest.

Did you feel their program was centered around your child and that

you understood the safety and efficacy of the interventions they

suggested for both the short and long-term as much as is known?

> >

> > I had called Dr. Neubrander and spoke in depth with Mr.

Neubrander,

> > his brother. I was left with more questions than answers.

> >

> > First: The theory is that autism is a treatable disease or

> disorder

> > not caused by genetics. OK fine, sounds logical - where is the

> > research? Well they claim to have 110 happy parents on this

> > injection of B12 but it's not based on any placebo trial nor have

> > they done any work on kids without Autism so how do you know the

> > dose, treatment course and level needed to reach the max

> potential.

> > No half life, no steady state, no better outcomes than the normal

> 30%

> > (which you could do with other therapies to help 'treat' symptoms.

> >

> > Second: Cost. They don't take insurance, they charge an

exsorbant

> > amount of money per office visit (with a PA no less) and then you

> > still need to pay for blood work to determine things like

> allergies,

> > toxins etc. It was $375 per first treatment office visit followed

> by

> > $225 once on a particular treatment. Well out of my range of

> > affordable.

> >

> > Third: They assume all kids were vaccinated and have not had any

> or

> > many children treated that did not have any vaccines.

> >

> > Forth: Based on Mr. Neubrander - his brother is an enviromnetal

> > physician - which I have never heard of (and worked in clinical

> trial

> > for nearly 20 yrs). He wanted to know if my son's stomach was

> > bloated because that would " indicate a yeast infection " . I

> reminded

> > him that my son had bowel/sensory issues and of course was not

> > completely potty trained. Any bulge could be constipation and

> unless

> > a lab could detect yeast I was not sure I understood how he could

> > come to that conclusion. I mean any bowel issues can cause a

child

> > to look 'pregnant' including Krohn's.

> >

> > So if you have gone and had good luck - let us know what worked

but

> > if you can just go to the store, buy probiotics and MB12 why not

> > start that yourself and save the money.

> >

>

November 6, 2007

I saw a video on his site stating that he was a pathologist and then

entered the field of environmental medicined to address the illness

of a loved one. No illness or relationship to the loved one, nor the

outcome is mentioned. I am glad to hear all sides of this. As for the

$ part, Dr. Neubrander's protocols are followed by other DANs who

attend conferences. I am counting nothing out yet but like I said,

since we have early response on milder interventions, slow and steady

is my rule along with safety. I hope to attend this years DAN

conference, in NJ, this year to learn more about what is out there so

I can make informed inquiries wherever we go.

>

> No - I am really glad you wrote, in fact, and would not consider

this

> to be some arguement or anything. This board is for safe sharing.

And

> on a phone call you cannot really get a feel for it. I would never

> write someone off completely and I am so happy to hear you had

great

> results. It's like meeting someone off the commercials for weight

loss

> or match maker! (a friend of ours met his dream woman on EHarmony

and

> we were shocked!).

>

> The office fee is out of our price range sadly and we don't believe

in

> the injections but they did offer dermal therapy for couples like

us so

> that was a consideration.

>

> What does this doctor have an actual degree in? Internal medicine

or

> allergy? It was hard to determine. I know he has a website.

>

> April

>

November 6, 2007

I'd like to chime in and second Kathleen's " Amazing "

I've been supplementing my son and have made amazing gains all by myself,

but felt it was time to get some assistance to take things to the next level

and then I found Dr Neubrander's practice. After spending $800 on one neuro

ped's visit and $450 on another - which by the way, were NOT covered by

insurance because they were sure to put that lovely autism diagnosis down

instead of pdd (which his reports show - and with our insurance, it makes a

difference) - I spent less than this for an initial consultation at Dr

Neubrander's office. After the visit, I got to see an action plan in

writing - future treatments/etc from the ton of paperwork I gladly filled

out. A handful of hours put into paperwork so a doctor can get the " big

picture " that is my son is truly not a lot to ask. What time does a

pediatrician have to spend with you - we never saw ours for more than 15

minutes. How long did he look at my son's chart for - 15 seconds before he

entered the room?? For the $1200+ we spent at the neuro ped's, I didn't

get anything that we already didn't know. It was by far the biggest waste

of money ever.

All they ask is that you start with a 5 week mb-12 treatment before anything

else is done. (Their high success rates with this treatment is the reason

behind the 5 week trial.) Five weeks was something I felt I could do to try

to help my son. The shots aren't even expensive when compared to all of the

other supplements I've purchased. I believe it's $45 for a month's supply

(covered by most insurances as well) After one shot - words like dinosaur

poured out of him like nothing. We've seen a night and day difference.

Giving him a shot is no big deal. The shot is so thin and small, it's

practically invisible. It's more of the fear of giving the shot that you

feel - than the actual shot itself.

This was the first doctor's office I felt like someone was actually

listening to me - and not talking at me, like most doctors do. My son and

I were both comfortable there - and I'm usually terribly uncomfortable in

most doctor's offices. I did not feel like I was a number, nor did I feel

like I was rushed around and out the door.

Here's the link to his website: http://www.drneubrander.com/dev/index.html

To answer another question I just saw, my son is not severely injured - and

I didn't feel like we got any less time or concern as anyone else. We

discussed safety and how aggressive we wanted to be with treating our son.

They respected my feelings - and didn't make me feel like a fool for asking.

I'd also like to add that I looked into other DAN's months back - and could

not even afford to think about paying their prices. So, if others have

looked into the costs associated, I'm not sure how $375 for an initial

consult would be considered to be that much when compared to the others. We

saw athan, his PA, and I thought he was truly great.

From:

[mailto: ] On Behalf Of katedb2003

Sent: Tuesday, November 06, 2007 12:34 PM

Subject: [ ] Re: DAN Dr in Central NJ

Amazing.

That is how I will begin to describe my experience with Dr.

Neubrander's office. Amazing.

My son was severely apraxic. He was diagnosed by a Speech Therapist

well versed in Apraxia. He made minor gains with intensive (4 30

minute ST sessions a week) until we began biomedical interventions.

We then saw a large burst of progress with a DAN physician in NY but

he continued to struggle. Then, we switched to Dr. Neubrander in

late 2005.

This switch was a life altering event. My son no longer meets the

criteria for Apraxia--not even close. His bowel issues are

resolving. He is growing more social every day. He is in typical

Kindergarten. HE has conversations with us! He jokes! I can say I

feel 100% that we would not be where we are without Dr. Neubrander's

office--and that includes the Mr. Neubrander referred to recently on

this board.

I do not want to argue with anyone but must tell my experience as I

hope others can benefit from it. The entire Neubrander practice--

both Mr. Neubrander and Dr. Neubrander in particular--have been kind,

knowledgeable and caring beyond words. They don't merely do this for

a living--it is truly their passion. Anyone who knows them says this-

-I could name DOZENS of people that i know personally who would

agree.

TO address a few things cited:

$$$$$$$$$$$$--thier prices are not exorbitent. I am not wealthy but

we have made many financial sacrifices to help our son. When you

factor in those prices are for by the hour costs (vs. say 15 minutes

with a PCP), factor in office staff, rent, licensing fees, etc. you

will see they make less profit than many professionals I know.

Truly. Ask yourself what you or your spouse is paid hourly and then

remember to subtract all that overhead.

Same results on your own? Everyone must do what they feel is best.

We all love our kids. But I personally do not know anyone who got

good results doing bioemd on their own and again as aparent I say the

clock is ticking. Life does not stop for us to help our children

catch up. Nor does age.

What's wprked best biomedically for us? MB12 shots. mild HBOT.

antiinflammatories. fish oil in high does. Glutathione. All

monitored closely by Dr. Neubrander and his staff.

So in closing I reiterate that I feel truly blessed to know and work

with both Neubrander Gentlemen--and I feel the role they play in my

son's life and my family's life has been AMAZING.

Kathleen

>

> I had called Dr. Neubrander and spoke in depth with Mr. Neubrander,

> his brother. I was left with more questions than answers.

>

> First: The theory is that autism is a treatable disease or

disorder

> not caused by genetics. OK fine, sounds logical - where is the

> research? Well they claim to have 110 happy parents on this

> injection of B12 but it's not based on any placebo trial nor have

> they done any work on kids without Autism so how do you know the

> dose, treatment course and level needed to reach the max

potential.

> No half life, no steady state, no better outcomes than the normal

30%

> (which you could do with other therapies to help 'treat' symptoms.

>

> Second: Cost. They don't take insurance, they charge an exsorbant

> amount of money per office visit (with a PA no less) and then you

> still need to pay for blood work to determine things like

allergies,

> toxins etc. It was $375 per first treatment office visit followed

by

> $225 once on a particular treatment. Well out of my range of

> affordable.

>

> Third: They assume all kids were vaccinated and have not had any

or

> many children treated that did not have any vaccines.

>

> Forth: Based on Mr. Neubrander - his brother is an enviromnetal

> physician - which I have never heard of (and worked in clinical

trial

> for nearly 20 yrs). He wanted to know if my son's stomach was

> bloated because that would " indicate a yeast infection " . I

reminded

> him that my son had bowel/sensory issues and of course was not

> completely potty trained. Any bulge could be constipation and

unless

> a lab could detect yeast I was not sure I understood how he could

> come to that conclusion. I mean any bowel issues can cause a child

> to look 'pregnant' including Krohn's.

>

> So if you have gone and had good luck - let us know what worked but

> if you can just go to the store, buy probiotics and MB12 why not

> start that yourself and save the money.

>

November 6, 2007

This was very helpful. For cost comparisons, I think Greedenfeld, in

Stockton, chares $900 which covers 2 visits: 1 with nurse and second

with doc.

My current DAN takes insurance and gets as much tests done covered by

insurance. We are in the beginning testing phase. The kits sit her

and I am still paralyzed thinking ofwhat we may find.

> >

> > I had called Dr. Neubrander and spoke in depth with Mr.

Neubrander,

> > his brother. I was left with more questions than answers.

> >

> > First: The theory is that autism is a treatable disease or

> disorder

> > not caused by genetics. OK fine, sounds logical - where is the

> > research? Well they claim to have 110 happy parents on this

> > injection of B12 but it's not based on any placebo trial nor have

> > they done any work on kids without Autism so how do you know the

> > dose, treatment course and level needed to reach the max

> potential.

> > No half life, no steady state, no better outcomes than the normal

> 30%

> > (which you could do with other therapies to help 'treat' symptoms.

> >

> > Second: Cost. They don't take insurance, they charge an exsorbant

> > amount of money per office visit (with a PA no less) and then you

> > still need to pay for blood work to determine things like

> allergies,

> > toxins etc. It was $375 per first treatment office visit followed

> by

> > $225 once on a particular treatment. Well out of my range of

> > affordable.

> >

> > Third: They assume all kids were vaccinated and have not had any

> or

> > many children treated that did not have any vaccines.

> >

> > Forth: Based on Mr. Neubrander - his brother is an enviromnetal

> > physician - which I have never heard of (and worked in clinical

> trial

> > for nearly 20 yrs). He wanted to know if my son's stomach was

> > bloated because that would " indicate a yeast infection " . I

> reminded

> > him that my son had bowel/sensory issues and of course was not

> > completely potty trained. Any bulge could be constipation and

> unless

> > a lab could detect yeast I was not sure I understood how he could

> > come to that conclusion. I mean any bowel issues can cause a

child

> > to look 'pregnant' including Krohn's.

> >

> > So if you have gone and had good luck - let us know what worked

but

> > if you can just go to the store, buy probiotics and MB12 why not

> > start that yourself and save the money.

> >

>

November 6, 2007

I do not know him and was giving my impression from a phone call I

had. I never said I was right. I said it seemed like he was

using " pat " treatments and I stated it was from the phone call with

his brother, in which he, a nondoc, without any discussion of

symptoms discussed only HBOT as a treatment for my kid which both

then and now, based on thorough research, seems wrong for my kid.

MB12, which seems to be his starting point according to others, was

never mentioned.

I did not say he was not researching. Obviously he is...he is at

conferences and active. What bothered me about that phone call that

took place at the beginning of my search and I knew nothing of DANs

etc. and never posted the call here before because I knew it might

touch a nerve.

What appeals to me about Dr. Neubrander is his background as a

pathologist and his understanding of disease progression, something

likely relevant to both my kids BUT since neither has an official

label I'd wait to go to him at a minimum. My complaint was about the

call and his brother. My speculation, and it was clear that was all

it was, was about him. All of that was my impression of my contact

with his office and not him.

I don't know how I can speak with him until I get around his brother

on the phone, one of the very reasons I posted and one of the very

reasons I will seek him out at a DAN conference.

I am glad he helped your child and in the end I hope we all get that.

> > >

> > > Hey if you are close to Edison come over for a playdate

sometime!

> > >

> > > I would love to surround myself with well educated Moms. We

use

> > the

> > > Omega Nordic kind and I do believe in moderation for stuff but

I

> > > would not live on cod liver oil or anything else for that

matter.

> > >

> > > I began the probiotics for the potty training issues and I can

> let

> > > you know how that turns out by Dec. The tabs for MB12 are

> horrible

> > > tasting and without knowing what normal levels should be I am

not

> > > sure how anyone can determine where to start off! We started

at

> > 1000

> > > mg.

> > >

> > > And I guess I was not convinced enough information is

understood

> > > about how to treat Autism really and until doctors get

sponsored

> to

> > > test these theories it is more like a shot in the dark. One of

> my

> > > main objections is the injections! We are morally opposed to

> them

> > > (oursleves) and I am not going to place even a natural form of

> > > vitamin into my child's body - that should be taken naturally.

> It

> > > would be different if the child was diabetic and needed insulin

> > based

> > > on blood work. You would have to cave in.

> > >

> > > April in Piscataway

> > >

> >

>

November 6, 2007

We went to Dr. in Lansdale Pa. Initial visit and standard

beginning tests. Very caring.

>

> Who do you use and recommend? I am not sure any will be on our

> insurance but it's worth a shot.

>

> OK if anyone is in NJ and would like to have a Special Us Moms

> Playdate - I will post soon.

>

November 6, 2007

> All they ask is that you start with a 5 week mb-12 treatment before

anything

> else is done. (Their high success rates with this treatment is the

reason

> behind the 5 week trial.) Five weeks was something I felt I could

do to try

> to help my son.

With regard to the above mentioned info - I am curious - what

research do they have that they presented to you that indicates

significant clinically based evidence? They stated they had a 30%

success rate so far - which you might have in time with other

treatments but like you stated - Mr. Neubrander seemed concerned and

caring and boasted about these 100+ parents that have seen

significant change.

My concern is that if this is such a great treatment - why hasn't it

been published or funded for research? Not that I want to hear any

horror stories - trust me, I am happy you wrote your experience.

What information do they have on the injections of MB12 and how do

they come about sorting out what dosage is suitable for each child?

What tests do they do (ie blood work, evaluations on speech or OT)

that prove significant change? Is most of the footwork done on your

reporting the symptoms?

With regard to the theory of Autism by way of toxic vaccines - would

you agree that the majority of people in the practice are being

treated for related vaccine injury? And if so, how do you think

these treatments will work for a child without vaccines?

Open to hearing your thoughts and others on this experimental

treatment.

April

November 6, 2007

I think a DAN conference is where you will get a lot of this as

Neubrander may have taken the lead on MB12 but his protocol is used

by many DANs and I suspect he could (should anyway) be able to relay

more data. I also believe it is not solely used for autistic patients

by other DANs and I think (can't recall) there is research in other

countries on this. The UK seems to look at gut/neuro connections and

vitamin absorption way more than we do in the U.S.

>

> > All they ask is that you start with a 5 week mb-12 treatment

before

> anything

> > else is done. (Their high success rates with this treatment is

the

> reason

> > behind the 5 week trial.) Five weeks was something I felt I

could

> do to try

> > to help my son.

>

> With regard to the above mentioned info - I am curious - what

> research do they have that they presented to you that indicates

> significant clinically based evidence? They stated they had a 30%

> success rate so far - which you might have in time with other

> treatments but like you stated - Mr. Neubrander seemed concerned

and

> caring and boasted about these 100+ parents that have seen

> significant change.

>

> My concern is that if this is such a great treatment - why hasn't

it

> been published or funded for research? Not that I want to hear any

> horror stories - trust me, I am happy you wrote your experience.

>

> What information do they have on the injections of MB12 and how do

> they come about sorting out what dosage is suitable for each

child?

> What tests do they do (ie blood work, evaluations on speech or OT)

> that prove significant change? Is most of the footwork done on

your

> reporting the symptoms?

>

> With regard to the theory of Autism by way of toxic vaccines -

would

> you agree that the majority of people in the practice are being

> treated for related vaccine injury? And if so, how do you think

> these treatments will work for a child without vaccines?

>

> Open to hearing your thoughts and others on this experimental

> treatment.

>

> April

>

November 6, 2007

Have you checked out the download section of his website? This may

answer some of your questions. I only went for 1 visit, so I may not

have all my information correct. He has parents video tape their

child before and after using mb12. The parents also keep a daily log

and note any changes they see. Dr. Neubrander has been using mb12 in

his patients for years and has set up his own protocol. By reviewing

the logs and getting feedback from parents, he has found what he

feels is the optimum dose and schedule (every 3 days). He has

everyone try mb12 because the testing is very expensive and

unreliable vs trying it with little/no risk. As I mentioned before,

my son's attention improved while he was on it. Hopefully this

helped a little bit, but there is much more information on his

website.

>

> > All they ask is that you start with a 5 week mb-12 treatment

before

> anything

> > else is done. (Their high success rates with this treatment is

the

> reason

> > behind the 5 week trial.) Five weeks was something I felt I

could

> do to try

> > to help my son.

>

> With regard to the above mentioned info - I am curious - what

> research do they have that they presented to you that indicates

> significant clinically based evidence? They stated they had a 30%

> success rate so far - which you might have in time with other

> treatments but like you stated - Mr. Neubrander seemed concerned

and

> caring and boasted about these 100+ parents that have seen

> significant change.

>

> My concern is that if this is such a great treatment - why hasn't

it

> been published or funded for research? Not that I want to hear any

> horror stories - trust me, I am happy you wrote your experience.

>

> What information do they have on the injections of MB12 and how do

> they come about sorting out what dosage is suitable for each

child?

> What tests do they do (ie blood work, evaluations on speech or OT)

> that prove significant change? Is most of the footwork done on

your

> reporting the symptoms?

>

> With regard to the theory of Autism by way of toxic vaccines -

would

> you agree that the majority of people in the practice are being

> treated for related vaccine injury? And if so, how do you think

> these treatments will work for a child without vaccines?

>

> Open to hearing your thoughts and others on this experimental

> treatment.

>

> April

>

November 6, 2007

Thank you for pointing out the web site - this might answer some of

my questions with regard to research as I pulled two papers from

which the protocols were designed after.

Here are my concerns (some of them anyway):

In the one paper that was apparently published in the American

Journal of Clinical Nutrition in 2004 - Dr. Neubrander is listed (as

last on the paper) and it had studied a group of 20 children with

Autism and 33 control children (not a huge or population based study

at all)with regard to the theory of impaired methylation. The report

mentions that the theory of of metabolic phenotype is not widely

accepted but has been supporte by several small studies.

In reviewing the published reports I was surprized they were not

based on MB12 at all in fact they list other possibles such as

succinylpurines,hyperactiviy in red blood cells, hig dose of B12 and

magnesium,sulphation in low functioning autism, and treatment with

Vit A.

The study was done on children in the 20 with an average age of 6.5,

14 boys and 6 girls. This study mentions that the methionine cycle

was measured and was 'significantly' different in the autistic

children. With such a low number of children I am not sure how they

determined this and yet they used a subset of only 8 kids to improve

metabolic profile.The article goes on to explain the parameters are

based on the consideration that other neurologic disorders such as

alzheimer and parkinsons, Schizophrenics and those with Downs have

been reported to imbalanced. Not that they have seen this with any

Autistic kids nor have they placed them in any order such as 20 kids

DX with Aspergers, 20 in PDD, 20 in Apraxia/Autism, 20 completely non

verbal autism, etc. The data merely suggests an impaired pathway but

does not prove it either.

Symptoms such as improvment in speech and cognition were not observed

or measured in any quantifiable manner and therefore cannot be

reported.

I would love to see work like this done on a more global basis of

hundreds of goal related children in that you get an idea of what

milestones they met and what was achieved, what specific tools they

used to measure the improvements and that they try to establish a

more balanced impaired autistic children to placebo ratio as well as

the gender bias. Diet considerations should have been taken either

into account or properly fractioned into the study. No mention of

any placebo children following the CF/GF diet, as you would have with

any FDA regulated study for clinical research.

My 2 cents - April

November 7, 2007

For more $ comparisons. We went to Dr. Megson (DAN Dr. in

Richmond VA) and she charged $600 for the initial visit (she does not

take insurance). This did not cover costs of tests/supplements.

Although, our insurance company did pay for the majority of the

tests. Also, I remember when I called Dr. Agin she charged $2500 per

visit.

So, $375 doesn't sound too high to me. Although, I too would find

that $375 plus the followup visits would put a dent in my pocket. I

know that there are DAN doctors out there that do take insurance. I

had my son going to 3 different DAN doctors that all took insurance.

This way I had 3 opinions on what we were doing, plus all of my own

research to back it up.

BTW - We tried the B12 shots with my son. I was concerned before I

started them as well. Every DAN doctor I spoke with (4) informed me

that I should not be concerned with the B12 shots harming my son. We

tried them for 6 months, but never really saw any gains with him. The

shots were very tiny, but he could feel them. We started using the

numbing cream and then he no longer felt them.

>

> This was very helpful. For cost comparisons, I think Greedenfeld,

in

> Stockton, chares $900 which covers 2 visits: 1 with nurse and

second

> with doc.

>

> My current DAN takes insurance and gets as much tests done covered

by

> insurance. We are in the beginning testing phase. The kits sit her

> and I am still paralyzed thinking ofwhat we may find.

November 7, 2007

Come on!!! Price comparisons of a Dan! to a neuroMD?!! And some of

you wonder why I get sarcastic?

If your child is not apraxic and you don't have to worry about paying

out of pocket or advocating for almost daily speech and occupational

therapy; don't have to worry about school placement; are not

concerned about clinical or genetic testing for hard and soft signs

of neurological damage; you are only comparing a neurodevelopmental

pediatrician with a

Dan! person (they are not all medical doctors as we know) then yes -a

neurodevelopmental pediatrician may be more expensive. A neuroMD is

all many of us have ever seen -and our children are mainstreamed and

talking and blending today. Yes I know there are some here who have

children that didn't respond to EFAs -and have to try other methods -

but to disrespect neurologists and developmental pediatricians who

spend years and years in medical school to perhaps a social worker

who happened to attend a Dan! conference- which may be all that it

takes to be a Dan! " doctor " As I posted before Tanner's one SLP Dr.

Renai Jonas is listed as a Dan! doctor online somewhere and she had

not a clue! She is not a Dan! but " perhaps went to a conference "

A neuroMD however you may see once...perhaps twice -and those evals

carry weight and credibility in the schools as well as for insurance

(perhaps even to cover the Dan!)

I know parents who spent over 20 thousand dollars on special ed legal

to keep their child in appropriate placement or have them moved to

appropriate placement -to keep them in therapy...etc. Try to secure

a special ed attorney for less then 7 thousand..on the other hand

visit someone credible and respected -my co -author of The Late

Talker book Dr. Marilyn Agin once and for whatever she charges she

will write up reports that will shut up any school to listen! You

tell me one Dan! person who has that power. On top of it -some of

our kids don't need all the special diets and supplements to help

them overcome. In fact if you check the archives -most don't. It

just so happens that autism is such a buzz that more in this group

embrace defeat autism now and that's fine -but not all need the

methods behind it. Again -most don't. To me someone to help tell me

what supplements to use...that was my parent gut together with

advisement with my children's neuroMDs- who are the only ones I

respect. If you don't respect your child's neuroMD that doesn't mean

that they all are horrible. And if you want to play that game -how

many neuroMDs have killed a child for autism treatment? I know a few

Dan! people did- does that mean they all have that potential?

http://mikestanton.wordpress.com/2006/11/12/abubakar-tariq-nadama-killed-by-auti\

sm-quackery/

It's your choice -mine was neuroMDs - Dr. Agin is beyond awesome.

=====

November 7, 2007

Unfortunately, Dr. Agin is not accepting any new patients:-(

>

> Come on!!! Price comparisons of a Dan! to a neuroMD?!! And some of

> you wonder why I get sarcastic?

>

> If your child is not apraxic and you don't have to worry about

paying

> out of pocket or advocating for almost daily speech and occupational

> therapy; don't have to worry about school placement; are not

> concerned about clinical or genetic testing for hard and soft signs

> of neurological damage; you are only comparing a neurodevelopmental

> pediatrician with a

> Dan! person (they are not all medical doctors as we know) then yes -

a

> neurodevelopmental pediatrician may be more expensive. A neuroMD is

> all many of us have ever seen -and our children are mainstreamed and

> talking and blending today. Yes I know there are some here who have

> children that didn't respond to EFAs -and have to try other

methods -

> but to disrespect neurologists and developmental pediatricians who

> spend years and years in medical school to perhaps a social worker

> who happened to attend a Dan! conference- which may be all that it

> takes to be a Dan! " doctor " As I posted before Tanner's one SLP Dr.

> Renai Jonas is listed as a Dan! doctor online somewhere and she had

> not a clue! She is not a Dan! but " perhaps went to a conference "

>

> A neuroMD however you may see once...perhaps twice -and those evals

> carry weight and credibility in the schools as well as for insurance

> (perhaps even to cover the Dan!)

>

> I know parents who spent over 20 thousand dollars on special ed

legal

> to keep their child in appropriate placement or have them moved to

> appropriate placement -to keep them in therapy...etc. Try to secure

> a special ed attorney for less then 7 thousand..on the other hand

> visit someone credible and respected -my co -author of The Late

> Talker book Dr. Marilyn Agin once and for whatever she charges she

> will write up reports that will shut up any school to listen! You

> tell me one Dan! person who has that power. On top of it -some of

> our kids don't need all the special diets and supplements to help

> them overcome. In fact if you check the archives -most don't. It

> just so happens that autism is such a buzz that more in this group

> embrace defeat autism now and that's fine -but not all need the

> methods behind it. Again -most don't. To me someone to help tell

me

> what supplements to use...that was my parent gut together with

> advisement with my children's neuroMDs- who are the only ones I

> respect. If you don't respect your child's neuroMD that doesn't

mean

> that they all are horrible. And if you want to play that game -how

> many neuroMDs have killed a child for autism treatment? I know a

few

> Dan! people did- does that mean they all have that potential?

> http://mikestanton.wordpress.com/2006/11/12/abubakar-tariq-nadama-

killed-by-autism-quackery/

>

> It's your choice -mine was neuroMDs - Dr. Agin is beyond awesome.

>

> =====

>

November 7, 2007

Some DANs are neuros. Not sure of the point particularly since the

comparison was of where one parent found help and where they did not.