Re: ? Cheryl

[Guest guest]

Thank you for your email. I am seeing my sons neurologist next week and I am

going to ask him to run Dr. G. test. I would like to see what he is doing off

the protocol. I have had so many people tell me so many things and I really

believe all are speaking from there hearts.

As for the doctor in Burbank what protocol is she using? I have not herd of

her. I am in Burbank often as my family lives there. I live in Northern Ca and

have yet to find a doc that does anything close to etc. The UC Mind

is big up here.

As for Dr. G. I am not sure he will be wiling to take us back. So I am not sure

is something I can do regardless. I also assume any protocol was for life

including .

Anyway thank you for your thoughts and information. I am trying to give it to

God and pray that he will so me the path.

Thanks again and any additional thought from anyone are welcome.

Re: Re: ?

Being in the top of your field doesn't necessarily mean much,

especially when it comes to autism. I can't tell you what to do

other than to follow your heart and gut but I will say this:

I, too, got a lot of e-mails saying they had a bad experience with

Dr. G. *But* I followed my gut as my gut told me this was the first

protocol to try. Gryffin fit it to " T " so it made perfect sense for

me to start here. DAN! was too " hit and miss " and Yasko was simply

to expensive to start when something else seemed to fit much better.

I chose to listen to what others said, take it all into consideration

and go from there. I took it all into consideration and still

decided this was right for us to try first. I'm glad we did but I

certainly don't believe that all protocols work for all kids. You

just have to try one and see what happens and move from there.

Most traditional doctors will say biomed doesn't work because there

is very little data. Medicine is still a science and science

requires data. We don't get data until someone comes along and

thinks outside the box. This is what Dr. G, Dr. Rimland, and a few

others have been trying to do. They've been trying to collect data.

The problem with collecting data is funding. Very few people/

corporations are willing to fund the studies on a large scale. There

aren't many doctors that are going to read a study of 25 children and

call that good data. So when you go to that top notch neurologist or

the top psychiatrist or whatever, you aren't seeing someone that

cares about what we don't have evidence to support. They also aren't

looking for what little evidence there is. These are people that are

mostly scholarly in nature, they wait for the new advances to be

proven before studying them. They develop their treatments based on

what's already known and when they develop new treatments, they do

the same thing of working within the confines of what's already

known. Much of what we have for any type of biomed intervention is

anecdotal, meaning it's parent reported. You won't find many doctors

that agree with Dr. G or any other " fringe medicine " because that's

what they are, they are on the outside looking in. The tide is

*slowly* turning as we start to see major publications (ie, the

discover magazine article) but it's still a long haul yet. Right

now, all they will say works is therapy and even then, they don't see

it as something that will improve *how* they function biologically,

just how the *appear* to function. Most doctors will simply tell you

to do what you can with therapy and accept your child's lot in life.

They are hung up on the concept that this is a psychological disorder

when in fact, it's not. But as long as people see it as a

psychological disorder, they will not look at the immunological and

metabolic reasons for their symptoms. This doesn't just occur in

autism, it occurs in many diseases/disorders/syndromes and you have

to *look* for someone willing to look outside the box. Many of these

doctors that are at the top of their field are also connected to

major hospitals. From experience, I can say that it really depends

on the school's view, too. For instance, we have many " top " autism

doctors at UCLA. *But* UCLA is the home of Lovaas, so they basically

only endorse ABA. That's where they focus their time and energy and

they also deny any biomed connection. If there was a biomed

connection, ABA wouldn't get the attention they want.

This probably didn't help much but I do hope you realize that there

aren't many doctors that are going to agree with any of the

protocols, be it , DAN! or Yasko.

There are good things about all 3 protocols and all 3 have helped

many children and adults but if you are looking for support from the

major medical community, you won't find it. You'll be lucky to find

one traditional that will *tolerate* it.

By the way, I do know of a lot of people doing Yasko with great

success. You have to do what you think is best for your child. If

you know that you're child is regressing while off the protocol,

that should tell you that there is something going on that can be

medically treated by the right person. Choosing the right person is

where you need to be comfortable. Are you going to see Dr. Mullan in

Burbank? I've heard good things about her. She's the one I would

see I think if I ever left . I don't think about it too much,

though since I'm pretty happy with our results with . I think

she also does DAN! so that's a plus as you wouldn't have to change

docs if Yasko doesn't fit right, either. Keep in mind with Yasko,

it's something you'll likely do for life. It is treating the genes

and genes aren't going to change so for the most part, it's lifelong.

Our pediatrician does not believe in biomed (and he has a son that is

autistic) but he certainly is willing to tolerate it and he does a

pretty decent job of it. He monitors what my son is taking and has

*never* told me he felt any of it was dangerous. As a matter of

fact, he views much of it as something that isn't going to hurt him

to do. He knows what my son is on and has no issues with it. His

issues with biomed, again, stem from data.

So do what you feel is right. If you feel you need a change of

protocol, then change. But don't let the naysayers keep you up at

night anymore. If you listened to them in the first place he

wouldn't have made the progress he has made.

Good luck and I hope you find what you need.

Cheryl

On Apr 30, 2007, at 12:25 PM, dazseaton@... wrote:

> I have been on again off again with what to do for my son. I stay

> awake

> night after night wanting to do the right thing for him. I know

> that most

> people on this site believe Dr. G to be right. Although I know he

> must be on to

> something I have so many doctors telling me that this protocol is

> wrong for my

> son. All know of Dr. G. Not one has said anything nice. How can all of

> them (top in the field of their expertise) be wrong. Although they

> agree with

> some things they have all said treating it this way is dangerous.

>

> We decided to take some time off and see how my son would do. At

> first no

> change good or bad. Then some good things happened he started

> eating and

> gaining weight. Until recently (now 4 months off everything but the

> ssri) there

> has been little change. He is still moving forward in his in-home

> program

> and school are fine except for social which on or off medication

> has always

> been his problem.

>

> I read all the emails from many groups and each group has their

> success

> stories. Although I guess you could say my son is doing well he is

> not what Dr.

> G. told me he would be. After 2 years I thought things would be

> different.

>

> Now once again I am second guessing my decision to take him off the

> protocol

> because even on Celexa his fears and OCD are back. He shyer and

> afraid. I

> have been told that is what happens with Autism sometimes. So my

> question is

> has this happened to anyone else trying to back off the protocol.

>

> I will be talking to a doctor who practices Dr. Amy Yasko protocol.

> I do

> not know what that will bring.

>

> I am not sure Dr. G. would take us back. I must also say the few

> times I

> have emailed I have gotten just as many emails of line about they

> had a bad

> expertises with Dr. G.

>

> I would love some thoughts if anyone has them.

>

> Thanks

>

>

>

>

> ************************************** See what's free at http://

> www.aol.com.

>

>

[Guest guest]

On May 1, 2007, at 10:41 AM, dazseaton@... wrote:

> Thank you for your email. I am seeing my sons neurologist next week

> and I am going to ask him to run Dr. G. test. I would like to see

> what he is doing off the protocol.

I would run the tests if he's willing but I don't know how much that

would help him. He won't really know what to do with the results if

he doesn't know the protocol. Our ped doesn't understand why Dr. G

is so hung up on the viral titers. Right now, the common belief in

medicine is that viral titers are normal and don't really effect the

immune system. High titers simply means (to them) that you've been

exposed to the virus. They don't really care about the numbers. One

thing that all of the different doctors of the protocols will tell

you is that high titers *do* have meaning. It's one thing to have

titers in the normal range, but to have them in an abnormally high

range *does* mean something and traditional doctors just don't

believe that. To me, it makes perfect sense. We have ranges for a

reason. If you go beyond that range, isn't there something more to

look at? If the lab report specifically states that x numbers mean

an active infection and your child doesn't have any symptoms of that

active infection, that should mean something. But traditional

medicine doesn't look at it that way. The way I see it is what's the

point of having the test if you don't care about the results?

> I have had so many people tell me so many things and I really

> believe all are speaking from there hearts.

Yes, I can say that most people are telling you what they truly

believe. I certainly don't think doctors are lying to you when they

say *they* think any biomedical treatments don't work. You already

know that obviously it does if his behavior is regressing with OCD

and such. The trouble with not researching things yourself (which

you obviously are) is that if you *only* listen to what others say,

you only have the benefit of *their* knowledge, which in many cases

is limited to what they *want* to know. So yes, they are probably

speaking from their hearts and they may believe it's true, but truth

is about what you know. And if, as a doctor, you don't know anything

about biomed and you have no data, then what you know is severely

limited and it's easy to say, " I don't believe it works, don't bother

trying " . They are telling you what *they* believe to be true.

Noble, but it doesn't help you any if they don't research these

things themselves and learn. If they don't have the desire to learn

about it, they certainly aren't going to believe it can help. The

personal reports from other parents, you have to take with a grain of

salt. Don't ignore them, listen to them and learn from them, but

always remember that each child is different and responds differently

to different protocols. Of course, you will hear from more parents

that say it didn't work for them because, quite frankly, they want to

let you know. And they should. But let your child be your guide.

Some will respond to , some to DAN! and some to Yasko. It's

definitely not a " one protocol fits all " situation.

>

> As for the doctor in Burbank what protocol is she using? I have not

> herd of her. I am in Burbank often as my family lives there. I live

> in Northern Ca and have yet to find a doc that does anything close

> to etc. The UC Mind is big up here.

Sorry, I thought you were going to see her as she is one of the few

that does the Yasko protocol. Dr. Mullen is one of the few DAN!'s

that also does Yasko so I just assumed you were going to see her.

Who are you seeing up north? Dr. Jang? Yasko is a hard protocol to

learn so if you can find a doctor that will work with you, that's

awesome. DAN! and Yasko don't mix, though. You do one or the

other. So it's nice to go to a doc that does both so you won't have

to be on the hunt for another if one doesn't work out.

>

> As for Dr. G. I am not sure he will be wiling to take us back. So I

> am not sure is something I can do regardless. I also assume

> any protocol was for life including .

If you want to see Dr. G again, it might be worth your time and

effort to ask him. I do believe that his concern is for the children

and he may be willing to take you back. I would certainly be very

humble with him, though. Remember, you need him more than he needs

you so you have to understand that if you want to go back to him, you

have to show him you mean business this time and you won't decide to

up and leave again. I don't think he wants to feel like he's wasting

his time on someone that isn't committed to his protocol, which is

understandable. If you left again, I would think that would

definitely be it for him. But you have to decide for yourself if you

think it was working for your son. You have to decide if you think

he would fit better into another protocol. Deciding on a protocol

takes a lot of time and energy because you really want to find the

best fit for your son. Don't look at any protocol with the eyes of a

mother, look at them from a " logical " standpoint. You obviously want

to help your son so you can take off the mother coat and put on the

researcher coat. Look at what's out there, look at what you think is

going on with your son and find the one that makes the most sense to

you. Some people won't see Dr. G because of the ssri's, some people

won't go to DAN! because it's too " cookie cutter " , etc. Some people

won't go to any of them because they don't think biomed works. You

have to figure out what *you* believe before you can begin to try to

understand what you think will best fit your son. You have to decide

whether or not you want to believe it can help or whether you want to

follow traditional medicine and believe that it doesn't work. It

sounds like you aren't sure if anything will work and to be honest,

you need to figure that out. It's okay to be unsure of which

protocol to use, it's not okay to go into it thinking none of it will

work because you won't be committed. I knew *something* would work.

I just wasn't sure which one to try first. I chose the one that made

the most sense for us and our situation. I told myself I would give

it 6 months and if I didn't see any improvements I would move on to

the next round. But if you don't think anything will work, you lose

hope. Hope is what drives so many of us parents to keep trying and

to keep working to help our kids. If you don't have the hope and

belief that something will work, then you have to work on how to help

your child without it and you have *accept* your situation. There

are parents that choose no biomed whatsoever and many of them will

tell you they are happy with their decision. It's not the wrong

decision, it's the right decision for them. I don't begrudge anyone

that chooses not to do biomed (although from my perspective it's not

the choice I would make but again, it's *my* perspective and I feel

for their children but it's not my choice) but you have to decide

what you believe. I only say this because it sounds like you aren't

sure what or who to believe. You have to be able to be comfortable

with whatever choice you make.

I'm sure you'll figure out your way. It helps to be able to talk

about and question things. It helps to hear what others have to

say. I'm sure you'll get there.

Good luck.

Cheryl

>

> Anyway thank you for your thoughts and information. I am trying to

> give it to God and pray that he will so me the path.

>

> Thanks again and any additional thought from anyone are welcome.

>

>

>

> Re: Re: ?

>

> Being in the top of your field doesn't necessarily mean much,

> especially when it comes to autism. I can't tell you what to do

> other than to follow your heart and gut but I will say this:

>

> I, too, got a lot of e-mails saying they had a bad experience with

> Dr. G. *But* I followed my gut as my gut told me this was the first

> protocol to try. Gryffin fit it to " T " so it made perfect sense for

> me to start here. DAN! was too " hit and miss " and Yasko was simply

> to expensive to start when something else seemed to fit much better.

> I chose to listen to what others said, take it all into consideration

> and go from there. I took it all into consideration and still

> decided this was right for us to try first. I'm glad we did but I

> certainly don't believe that all protocols work for all kids. You

> just have to try one and see what happens and move from there.

>

> Most traditional doctors will say biomed doesn't work because there

> is very little data. Medicine is still a science and science

> requires data. We don't get data until someone comes along and

> thinks outside the box. This is what Dr. G, Dr. Rimland, and a few

> others have been trying to do. They've been trying to collect data.

> The problem with collecting data is funding. Very few people/

> corporations are willing to fund the studies on a large scale. There

> aren't many doctors that are going to read a study of 25 children and

> call that good data. So when you go to that top notch neurologist or

> the top psychiatrist or whatever, you aren't seeing someone that

> cares about what we don't have evidence to support. They also aren't

> looking for what little evidence there is. These are people that are

> mostly scholarly in nature, they wait for the new advances to be

> proven before studying them. They develop their treatments based on

> what's already known and when they develop new treatments, they do

> the same thing of working within the confines of what's already

> known. Much of what we have for any type of biomed intervention is

> anecdotal, meaning it's parent reported. You won't find many doctors

> that agree with Dr. G or any other " fringe medicine " because that's

> what they are, they are on the outside looking in. The tide is

> *slowly* turning as we start to see major publications (ie, the

> discover magazine article) but it's still a long haul yet. Right

> now, all they will say works is therapy and even then, they don't see

> it as something that will improve *how* they function biologically,

> just how the *appear* to function. Most doctors will simply tell you

> to do what you can with therapy and accept your child's lot in life.

> They are hung up on the concept that this is a psychological disorder

> when in fact, it's not. But as long as people see it as a

> psychological disorder, they will not look at the immunological and

> metabolic reasons for their symptoms. This doesn't just occur in

> autism, it occurs in many diseases/disorders/syndromes and you have

> to *look* for someone willing to look outside the box. Many of these

> doctors that are at the top of their field are also connected to

> major hospitals. From experience, I can say that it really depends

> on the school's view, too. For instance, we have many " top " autism

> doctors at UCLA. *But* UCLA is the home of Lovaas, so they basically

> only endorse ABA. That's where they focus their time and energy and

> they also deny any biomed connection. If there was a biomed

> connection, ABA wouldn't get the attention they want.

>

> This probably didn't help much but I do hope you realize that there

> aren't many doctors that are going to agree with any of the

> protocols, be it , DAN! or Yasko.

>

> There are good things about all 3 protocols and all 3 have helped

> many children and adults but if you are looking for support from the

> major medical community, you won't find it. You'll be lucky to find

> one traditional that will *tolerate* it.

>

> By the way, I do know of a lot of people doing Yasko with great

> success. You have to do what you think is best for your child. If

> you know that you're child is regressing while off the protocol,

> that should tell you that there is something going on that can be

> medically treated by the right person. Choosing the right person is

> where you need to be comfortable. Are you going to see Dr. Mullan in

> Burbank? I've heard good things about her. She's the one I would

> see I think if I ever left . I don't think about it too much,

> though since I'm pretty happy with our results with . I think

> she also does DAN! so that's a plus as you wouldn't have to change

> docs if Yasko doesn't fit right, either. Keep in mind with Yasko,

> it's something you'll likely do for life. It is treating the genes

> and genes aren't going to change so for the most part, it's lifelong.

>

> Our pediatrician does not believe in biomed (and he has a son that is

> autistic) but he certainly is willing to tolerate it and he does a

> pretty decent job of it. He monitors what my son is taking and has

> *never* told me he felt any of it was dangerous. As a matter of

> fact, he views much of it as something that isn't going to hurt him

> to do. He knows what my son is on and has no issues with it. His

> issues with biomed, again, stem from data.

>

> So do what you feel is right. If you feel you need a change of

> protocol, then change. But don't let the naysayers keep you up at

> night anymore. If you listened to them in the first place he

> wouldn't have made the progress he has made.

>

> Good luck and I hope you find what you need.

>

> Cheryl

>

> On Apr 30, 2007, at 12:25 PM, dazseaton@... wrote:

>

> > I have been on again off again with what to do for my son. I stay

> > awake

> > night after night wanting to do the right thing for him. I know

> > that most

> > people on this site believe Dr. G to be right. Although I know he

> > must be on to

> > something I have so many doctors telling me that this protocol is

> > wrong for my

> > son. All know of Dr. G. Not one has said anything nice. How can

> all of

> > them (top in the field of their expertise) be wrong. Although they

> > agree with

> > some things they have all said treating it this way is dangerous.

> >

> > We decided to take some time off and see how my son would do. At

> > first no

> > change good or bad. Then some good things happened he started

> > eating and

> > gaining weight. Until recently (now 4 months off everything but the

> > ssri) there

> > has been little change. He is still moving forward in his in-home

> > program

> > and school are fine except for social which on or off medication

> > has always

> > been his problem.

> >

> > I read all the emails from many groups and each group has their

> > success

> > stories. Although I guess you could say my son is doing well he is

> > not what Dr.

> > G. told me he would be. After 2 years I thought things would be

> > different.

> >

> > Now once again I am second guessing my decision to take him off the

> > protocol

> > because even on Celexa his fears and OCD are back. He shyer and

> > afraid. I

> > have been told that is what happens with Autism sometimes. So my

> > question is

> > has this happened to anyone else trying to back off the

> protocol.

> >

> > I will be talking to a doctor who practices Dr. Amy Yasko protocol.

> > I do

> > not know what that will bring.

> >

> > I am not sure Dr. G. would take us back. I must also say the few

> > times I

> > have emailed I have gotten just as many emails of line about they

> > had a bad

> > expertises with Dr. G.

> >

> > I would love some thoughts if anyone has them.

> >

> > Thanks

> >

> >

> >

> >

> > ************************************** See what's free at http://

> > www.aol.com.

> >

> >

[Guest guest]

Dr. G would always take the child back!

Wayne