Staying motivated is hard!

March 8, 2012

As we introduce each new supplement or therapy we get so excited... And for many

of the supplements we see gains and then we see either regression or return to

what he was before. Part of me feels the gains we see are just coincidental and

just gains from growing up or aba or speech and not really the biomedical. His

Dan doctor is also so wishy washy because really there is no concrete evidence

for the biomedical and what works for one kid doesn't work for another....

So how do we stay motivated?

How do we know we aren't just loading our kid up on vitamins and making him gag?

How do we know Dan doctors aren't just making a ton of money off our hope to

cure our kid???

Keeping a log shows me how up and down this all is and I'm not sold its worth it

???

I need some motivation and some guidance!

AND.... Not to mention the public school teachers think biomedical is a waste of

a time and they almost look down on u for doing it....I'm really confused.

March 9, 2012

Are you doing any testing? Or just going blind? There is a lot of research. Ow to support biomedical treatments - but it differs on each kid. If you are seeing gains & regression, it warrants some detective work on his part. Is your doc working of individualized testing and treatment that is geared just for your kid, or is he working a protocol that he does with all kids? There is a big difference. Ruth Sent from my iPhone

As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....

So how do we stay motivated?

How do we know we aren't just loading our kid up on vitamins and making him gag?

How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???

Keeping a log shows me how up and down this all is and I'm not sold its worth it ???

I need some motivation and some guidance!

AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.

March 9, 2012

Cami,

Stop for a while and see how it goes. Its good to take a break now and then to reassess and establish a new baseline. Log everything while you're off, too.

The only thing I would suggest to you is to not stop the multivitamin and efa's for too long. Unless he is eating a stellar diet of foods you've grown yourself, chances are he's not getting all his nutrients and they do have to come from somewhere.

I think we all go periods when we feel like you do. I know I have. Its frustrating, puzzling, expensive,and no fun at all. And while we may not have it EXACTLY right because we are left to fumble our way around in the dark, atleast we are doing something - making lifestyle changes and becoming more aware and informed. Don't worry about what your child's teachers think - they are educators, not medical doctors...most medical doctors don't even know what to do and wont until big Pharma develops a cocktail they can introduce. Why is it a parent can hand a child a bag of m & M's and no one blinks, but hand a child a handful of supplements and we're head cases? This world has gone bonkers - teacher included -so it's best to keep the information you share to a minimum.

Maybe its time to find a new Dan or ask your current one to go back to the drawing board. Where are you? I am so blessed to have found an integrative m.d. who charges for just regular office visits and only asks to see my son 2-3 times a year. I honestly don't know how some people afford their dans. It might be time to "clean house".

Take a break and regroup. But please don't ever give up. You are the only person who will fight for your child's life. We are right here when the days get too long,

Tammy

..

Sent from my Kindle Fire

March 9, 2012

I just burst into tears reading this. I am doing NAET with my daughter. I have stopped all vits but am doing

gfcf low sal and low ox. Everything seems to bother her gut. Not seeing any longterm improvements except for much less frequent and better bowel movements. So hard to keep the faith.

Sent from Yahoo! Mail on Android

March 9, 2012

yah. it is a very hard fight for many of us. for years i went from pediatricain to pediatricain to GI docter to chinese docter to naturopaths...trying to explain to them in detail how sick my son was.

me like an idiot thinking they really actually gave a rats ass about my son. they smiled politely sometimes,sometimes not. most took my money and then refused my calls.

the MDs.....well they would try to insinuate i was makin everything up or i was confused.

their is a corner in hell for these docs ...yes move over CPS workers we got some good old docs to add to that mix...

i tried all the supplements and nasty pharma drugs, to no avail for my son. I can never figure out what kept me goin...except i had/have a stubborn streak of refusing to give up. maybe some primitive part of me like a wild animal I kept on goin.....kept searching....went thru many many dead ends....

I found out that no one is a better docter then me when it comes to my son. i know his illnesses symptoms better then anyone...and i learned to trust no one BUT me. I became my sons docter. I learned and learned and still learn....I will be forever trying to heal my son...and when he is healed then i will be chasing someone elses autistic kid to heal their kid......

I found out the things in the short version that made big huge gains that stayed...were andy cutler chelation...

cutting out all grains in the diet. all organic food. all cooked from scratch. delayed food allergy test.

low oxylate at one point and then low salicycate.

I kept a bloody journal took me a year to figure things out after carrying that thing around with me every where... i wrote eveeything from what he ate to what his mood was to what he pooped..what it smelled like looked like and size of it.

I finally was able to pinpoint what foods caused what reactions and that included supps.

when things got bad...and as they still do...i go on couple days just low boiled veggies nothing else as i know these are easy to digest and then i carefully add one food at a time back in his diet. i learned to use a pendulum...good old fashion energy testing....that is what the old folks used back int he day....before we had fancy tests..

now i am dealing with horrible strep bacteria in my son...so we are back to me searching for the answer to this..

I still have days that I look to the sky and whisper Oh God .....as i cant even find the words to say....

my favorite qoute from winston churchill.....(he must have been one bad ass dude...)

he said " When you find yourself goin thru hell.....keep goin"

and so I say yah....what he said.

channa

To: mb12valtrex Sent: Friday, March 9, 2012 2:42 AMSubject: Staying motivated is hard!

As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....So how do we stay motivated?How do we know we aren't just loading our kid up on vitamins and making him gag?How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???Keeping a log shows me how up and down this all is and I'm not sold its worth it ???I need some motivation and some guidance!AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing

it....I'm really confused.

March 10, 2012

I'm in orange county

>

> Cami,

>

> Stop for a while and see how it goes. Its good to take a break now and then

to reassess and establish a new baseline. Log everything while you're off, too.

>

> The only thing I would suggest to you is to not stop the multivitamin and

efa's for too long. Unless he is eating a stellar diet of foods you've grown

yourself, chances are he's not getting all his nutrients and they do have to

come from somewhere.

>

> I think we all go periods when we feel like you do. I know I have. Its

frustrating, puzzling, expensive,and no fun at all. And while we may not have it

EXACTLY right because we are left to fumble our way around in the dark, atleast

we are doing something - making lifestyle changes and becoming more aware and

informed. Don't worry about what your child's teachers think - they are

educators, not medical doctors...most medical doctors don't even know what to do

and wont until big Pharma develops a cocktail they can introduce. Why is it a

parent can hand a child a bag of m & M's and no one blinks, but hand a child a

handful of supplements and we're head cases? This world has gone bonkers -

teacher included -so it's best to keep the information you share to a minimum.

>

> Maybe its time to find a new Dan or ask your current one to go back to the

drawing board. Where are you? I am so blessed to have found an integrative m.d.

who charges for just regular office visits and only asks to see my son 2-3 times

a year. I honestly don't know how some people afford their dans. It might be

time to " clean house " .

>

> Take a break and regroup. But please don't ever give up. You are the only

person who will fight for your child's life. We are right here when the days get

too long,

>

> Tammy

> .

>

> Sent from my Kindle Fire

>

March 10, 2012

I'm definitely a fighter I just want to make sure I'm not fighting the wrong

fight...is biomedical just a pipe dream that they use to drain money from all of

us hopeful mothers???

We are treating his allergies and that I believe in and I have no issues with

the supplements.... It's the anti viral and fungus I struggle with.... The r

still meds that we r putting into our children's sensitive bodies....

And then I read books like the " disconnected kid " and read how traumatic

pregnancies cause autism and I was under soooo much stress during the pregnancy

and I del so guilty....

And the book goes on to say the brain developed more on one side ( right or

left) for whatever reason and all u have to do is strengthen the other side off

the brain thru exercises and I think is that the route?

Or is it vitamins?

Or cod liver?

Or b12 shots?

Or aba

Or rdi

Or speech

And then I see myself going crazy... Yet again ... And crying and worrying ....

And my son isn't severe so then I feel guilty because other kids are worse off

then him ...

And ya

I'm a mess

And sooo confused

>

> yah. it is a very hard fight for many of us. for years i went from

pediatricain to pediatricain to GI docter to chinese docter to

naturopaths...trying to explain to them in detail how sick my son was.

> me like an idiot thinking they really actually gave a rats ass about my son.

they smiled politely sometimes,sometimes not. most took my money and thenÂ

refused my calls.

> the MDs.....well they would try to insinuate i was makin everything up or i

was confused.

> their is a corner in hell for these docs ...yes move over CPS workers we got

some good old docs to add to that mix...

> i tried all the supplements and nasty pharma drugs, to no avail for my son.Â

I can never figure out what kept me goin...except i had/have a stubborn streak

of refusing to give up. maybe some primitive part of me like a wild animal I

kept on goin.....kept searching....went thru many many dead ends....

> Â

> I found out that no one is a better docter then me when it comes to my son. i

know his illnesses symptoms better then anyone...and i learned to trust no one

BUT me. I became my sons docter.Â I learned and learned and still learn....I

will be forever trying to heal my son...and when he is healed then i will be

chasing someone elses autistic kid to heal their kid......

> Â

> I found out the things inÂ the short version that made big huge gains that

stayed...were andy cutler chelation...

> cutting out all grains in the diet. all organic food. all cooked from

scratch.Â delayed food allergy test.

> low oxylate at one point and then low salicycate.

> I kept a bloody journal took me a year to figure things outÂ after Â carrying

that thing around with me every where... i wrote eveeything from what he ate to

what his mood was to what he pooped..what it smelled like looked like and size

of it.

> I finally was able to pinpoint what foods caused what reactions and that

included supps.

> Â

> when things got bad...and as they still do...i go on couple days just low

boiled veggies nothing else as i know these are easy to digest and then i

carefully add one food at a time back in his diet. i learned to use a

pendulum...good old fashion energy testing....that is what the old folks used

back int he day....before we had fancy tests..

> Â

> now i am dealing with horrible strep bacteria in my son...so we are back to me

searching for the answer to this..

> I still have daysÂ that IÂ lookÂ Â to Â the sky and whisperÂ Oh GodÂ

......as i cant evenÂ find the words to say....

> my favorite qoute from winston churchill.....(he must have beenÂ one bad ass

dude...)

> he said " When you find yourself goin thru hell.....keep goin "

> and so I say yah....what he said.

> Â

> channa

>

> ________________________________

>

> To: mb12valtrex

> Sent: Friday, March 9, 2012 2:42 AM

> Subject: Staying motivated is hard!

>

> Â

> As we introduce each new supplement or therapy we get so excited... And for

many of the supplements we see gains and then we see either regression or return

to what he was before. Part of me feels the gains we see are just coincidental

and just gains from growing up or aba or speech and not really the biomedical.

His Dan doctor is also so wishy washy because really there is no concrete

evidence for the biomedical and what works for one kid doesn't work for

another....

>

> So how do we stay motivated?

> How do we know we aren't just loading our kid up on vitamins and making him

gag?

> How do we know Dan doctors aren't just making a ton of money off our hope to

cure our kid???

> Keeping a log shows me how up and down this all is and I'm not sold its worth

it ???

>

> I need some motivation and some guidance!

> AND.... Not to mention the public school teachers think biomedical is a waste

of a time and they almost look down on u for doing it....I'm really confused.

>

March 10, 2012

Yes I have a Dan for my son and he's done all the tests but when we went over

them it didn't make much sense ... And he's always like u can tr this or that...

But I feel like sometimes I know more and he's well known ... And he's not

motivational or encouraging and I guess I expected that

>

> > As we introduce each new supplement or therapy we get so excited... And for

many of the supplements we see gains and then we see either regression or return

to what he was before. Part of me feels the gains we see are just coincidental

and just gains from growing up or aba or speech and not really the biomedical.

His Dan doctor is also so wishy washy because really there is no concrete

evidence for the biomedical and what works for one kid doesn't work for

another....

> >

> > So how do we stay motivated?

> > How do we know we aren't just loading our kid up on vitamins and making him

gag?

> > How do we know Dan doctors aren't just making a ton of money off our hope to

cure our kid???

> > Keeping a log shows me how up and down this all is and I'm not sold its

worth it ???

> >

> > I need some motivation and some guidance!

> > AND.... Not to mention the public school teachers think biomedical is a

waste of a time and they almost look down on u for doing it....I'm really

confused.

> >

>

March 10, 2012

Honestly. That's the struggle. It's a bit uncertain. I really like you need to do some testing and narrow down the options. I would test mine function, viruses, bacteria. Methylation & the ONE test are really informative. Those should really help you to gain some understanding of what is going on. I have felt like you have many times. I also have felt like I was going to scream if I had to rub one more cream, give one more supp, read one more medical journal article while googling the terms. I have qindered if i just wasnt parenting well enough, or doing enough therapy. BUT the testing is what keeps me going. It shows me that -yes- this is a health issue. My kid is sick. It gives me a clear path for treatment And it keeps me going. I do it because my kids are sick. Not because I have a promise for recovery but because they are sick and need treatment. We had a really tough time for the last few years. My son who was doing so well just fell apart within the course of a week and he never came back. Finally we tested for infections, viruses, immune Function and got our answers. It is scary because we are dealing with tough infections. But at least I know where I'm going now. Which path I'm on. Sometimes we straddle a couple. But thankfully we have each other for support as well. Keep posting. These women will have your back. RuthSent from my iPhone

I'm definitely a fighter I just want to make sure I'm not fighting the wrong fight...is biomedical just a pipe dream that they use to drain money from all of us hopeful mothers???

We are treating his allergies and that I believe in and I have no issues with the supplements.... It's the anti viral and fungus I struggle with.... The r still meds that we r putting into our children's sensitive bodies....

And then I read books like the "disconnected kid" and read how traumatic pregnancies cause autism and I was under soooo much stress during the pregnancy and I del so guilty....

And the book goes on to say the brain developed more on one side ( right or left) for whatever reason and all u have to do is strengthen the other side off the brain thru exercises and I think is that the route?

Or is it vitamins?

Or cod liver?

Or b12 shots?

Or aba

Or rdi

Or speech

And then I see myself going crazy... Yet again ... And crying and worrying .... And my son isn't severe so then I feel guilty because other kids are worse off then him ...

And ya

I'm a mess

And sooo confused

>

> yah. it is a very hard fight for many of us. for years i went from pediatricain to pediatricain to GI docter to chinese docter to naturopaths...trying to explain to them in detail how sick my son was.

> me like an idiot thinking they really actually gave a rats ass about my son. they smiled politely sometimes,sometimes not. most took my money and thenÃ‚ refused my calls.

> the MDs.....well they would try to insinuate i was makin everything up or i was confused.

> their is a corner in hell for these docs ...yes move over CPS workers we got some good old docs to add to that mix...

> i tried all the supplements and nasty pharma drugs, to no avail for my son.Ã‚ I can never figure out what kept me goin...except i had/have a stubborn streak of refusing to give up. maybe some primitive part of me like a wild animal I kept on goin.....kept searching....went thru many many dead ends....

> Ã‚

> I found out that no one is a better docter then me when it comes to my son. i know his illnesses symptoms better then anyone...and i learned to trust no one BUT me. I became my sons docter.Ã‚ I learned and learned and still learn....I will be forever trying to heal my son...and when he is healed then i will be chasing someone elses autistic kid to heal their kid......

> Ã‚

> I found out the things inÃ‚ the short version that made big huge gains that stayed...were andy cutler chelation...

> cutting out all grains in the diet. all organic food. all cooked from scratch.Ã‚ delayed food allergy test.

> low oxylate at one point and then low salicycate.

> I kept a bloody journal took me a year to figure things outÃ‚ after Ã‚ carrying that thing around with me every where... i wrote eveeything from what he ate to what his mood was to what he pooped..what it smelled like looked like and size of it.

> I finally was able to pinpoint what foods caused what reactions and that included supps.

> Ã‚

> when things got bad...and as they still do...i go on couple days just low boiled veggies nothing else as i know these are easy to digest and then i carefully add one food at a time back in his diet. i learned to use a pendulum...good old fashion energy testing....that is what the old folks used back int he day....before we had fancy tests..

> Ã‚

> now i am dealing with horrible strep bacteria in my son...so we are back to me searching for the answer to this..

> I still have daysÃ‚ that IÃ‚ lookÃ‚ Ã‚ to Ã‚ the sky and whisperÃ‚ Oh GodÃ‚ .....as i cant evenÃ‚ find the words to say....

> my favorite qoute from winston churchill.....(he must have beenÃ‚ one bad ass dude...)

> he said " When you find yourself goin thru hell.....keep goin"

> and so I say yah....what he said.

> Ã‚

> channa

>

> ________________________________

>

> To: mb12valtrex

> Sent: Friday, March 9, 2012 2:42 AM

> Subject: Staying motivated is hard!

>

> Ã‚

> As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....

>

> So how do we stay motivated?

> How do we know we aren't just loading our kid up on vitamins and making him gag?

> How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???

> Keeping a log shows me how up and down this all is and I'm not sold its worth it ???

>

> I need some motivation and some guidance!

> AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.

>

March 10, 2012

I love disconnected kids and I'm about half way through the assessments on my two boys. While I appreciate his honesty, the author is a bit harsh at times and if he was standing in front of me, I probably would have stomped on his toes. Hard! But (from reading reviews) he admits this in his second book and (supposedly)has changed his tune. But thats neither here nor there. If he has valuable info for me at the cost of $10 and a little criticism, I'll take it. The way I see it, I've given more money to bigger jerks, right?

I have to admit,I do let a little bit of guilt creep in. I never have to ask myself what I could have done different because there's a hundred things and I know it. But if we succumb to that, we will never move forward because there are too many people out there too content to blame mothers and making lots of money off the very things that are contributing to our kids' problems. F them.

Tammy

Sent from my Kindle Fire

March 10, 2012

Wow Ruth. This is EXACTLY what keeps me motivated. Like Cam, I wonder, too, if my son would have just gotten better on his own without any biomed intervention. But I worry so much about when he gets older. I worry about puberty and about viruses and infections down the road. Will it send him spiraling? I do not know and it's the one thing I worry about more than anything. But what I DO know is a healthy lifestyle can only work in his favor so I'm racing the clock here to get him as healthy as possible before he becomes a teenager and starts to make his own choices.

I thank God for you guys every day : )

Tammy

Sent from my Kindle Fire

Sent: Sat Mar 10 07:34:14 EST 2012

To: " mb12valtrex " <mb12valtrex >

Cc: " mb12valtrex " <mb12valtrex >

Subject: Re: Re: Staying motivated is hard!

Honestly. That's the struggle. It's a bit uncertain. I really like you need to do some testing and narrow down the options. I would test mine function, viruses, bacteria. Methylation & the ONE test are really informative. Those should really help you to gain some understanding of what is going on. I have felt like you have many times. I also have felt like I was going to scream if I had to rub one more cream, give one more supp, read one more medical journal article while googling the terms. I have qindered if i just wasnt parenting well enough, or doing enough therapy. BUT the testing is what keeps me going. It shows me that -yes- this is a health issue. My kid is sick. It gives me a clear path for treatment And it keeps me going. I do it because my kids are sick. Not because I have a promise for recovery but because they are sick and need treatment. We had a really tough time for the last few years. My son who was doing so well just fell apart within the course of a week and he never came back. Finally we tested for infections, viruses, immune Function and got our answers. It is scary because we are dealing with tough infections. But at least I know where I'm going now. Which path I'm on. Sometimes we straddle a couple. But thankfully we have each other for support as well. Keep posting. These women will have your back. RuthSent from my iPhone

I'm definitely a fighter I just want to make sure I'm not fighting the wrong fight...is biomedical just a pipe dream that they use to drain money from all of us hopeful mothers???

We are treating his allergies and that I believe in and I have no issues with the supplements.... It's the anti viral and fungus I struggle with.... The r still meds that we r putting into our children's sensitive bodies....

And then I read books like the "disconnected kid" and read how traumatic pregnancies cause autism and I was under soooo much stress during the pregnancy and I del so guilty....

And the book goes on to say the brain developed more on one side ( right or left) for whatever reason and all u have to do is strengthen the other side off the brain thru exercises and I think is that the route?

Or is it vitamins?

Or cod liver?

Or b12 shots?

Or aba

Or rdi

Or speech

And then I see myself going crazy... Yet again ... And crying and worrying .... And my son isn't severe so then I feel guilty because other kids are worse off then him ...

And ya

I'm a mess

And sooo confused

>

> yah. it is a very hard fight for many of us. for years i went from pediatricain to pediatricain to GI docter to chinese docter to naturopaths...trying to explain to them in detail how sick my son was.

> me like an idiot thinking they really actually gave a rats ass about my son. they smiled politely sometimes,sometimes not. most took my money and thenÃ‚ refused my calls.

> the MDs.....well they would try to insinuate i was makin everything up or i was confused.

> their is a corner in hell for these docs ...yes move over CPS workers we got some good old docs to add to that mix...

> i tried all the supplements and nasty pharma drugs, to no avail for my son.Ã‚ I can never figure out what kept me goin...except i had/have a stubborn streak of refusing to give up. maybe some primitive part of me like a wild animal I kept on goin.....kept searching....went thru many many dead ends....

> Ã‚

> I found out that no one is a better docter then me when it comes to my son. i know his illnesses symptoms better then anyone...and i learned to trust no one BUT me. I became my sons docter.Ã‚ I learned and learned and still learn....I will be forever trying to heal my son...and when he is healed then i will be chasing someone elses autistic kid to heal their kid......

> Ã‚

> I found out the things inÃ‚ the short version that made big huge gains that stayed...were andy cutler chelation...

> cutting out all grains in the diet. all organic food. all cooked from scratch.Ã‚ delayed food allergy test.

> low oxylate at one point and then low salicycate.

> I kept a bloody journal took me a year to figure things outÃ‚ after Ã‚ carrying that thing around with me every where... i wrote eveeything from what he ate to what his mood was to what he pooped..what it smelled like looked like and size of it.

> I finally was able to pinpoint what foods caused what reactions and that included supps.

> Ã‚

> when things got bad...and as they still do...i go on couple days just low boiled veggies nothing else as i know these are easy to digest and then i carefully add one food at a time back in his diet. i learned to use a pendulum...good old fashion energy testing....that is what the old folks used back int he day....before we had fancy tests..

> Ã‚

> now i am dealing with horrible strep bacteria in my son...so we are back to me searching for the answer to this..

> I still have daysÃ‚ that IÃ‚ lookÃ‚ Ã‚ to Ã‚ the sky and whisperÃ‚ Oh GodÃ‚ .....as i cant evenÃ‚ find the words to say....

> my favorite qoute from winston churchill.....(he must have beenÃ‚ one bad ass dude...)

> he said " When you find yourself goin thru hell.....keep goin"

> and so I say yah....what he said.

> Ã‚

> channa

>

> ________________________________

>

> To: mb12valtrex

> Sent: Friday, March 9, 2012 2:42 AM

> Subject: Staying motivated is hard!

>

> Ã‚

> As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....

>

> So how do we stay motivated?

> How do we know we aren't just loading our kid up on vitamins and making him gag?

> How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???

> Keeping a log shows me how up and down this all is and I'm not sold its worth it ???

>

> I need some motivation and some guidance!

> AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.

>

March 10, 2012

Hi CamiSome mum from the Gaps group have found using a therapy called NAET really helpful for their kids allergy and one or two adults on the group have a lot of praise for this therapy and believe it works...Bin thinking of using it but find that Gaps diet itself can be expensive never mind the supplement suggested wth the diet..Sent from my iPod

I'm definitely a fighter I just want to make sure I'm not fighting the wrong fight...is biomedical just a pipe dream that they use to drain money from all of us hopeful mothers???

We are treating his allergies and that I believe in and I have no issues with the supplements.... It's the anti viral and fungus I struggle with.... The r still meds that we r putting into our children's sensitive bodies....

And then I read books like the "disconnected kid" and read how traumatic pregnancies cause autism and I was under soooo much stress during the pregnancy and I del so guilty....

And the book goes on to say the brain developed more on one side ( right or left) for whatever reason and all u have to do is strengthen the other side off the brain thru exercises and I think is that the route?

Or is it vitamins?

Or cod liver?

Or b12 shots?

Or aba

Or rdi

Or speech

And then I see myself going crazy... Yet again ... And crying and worrying .... And my son isn't severe so then I feel guilty because other kids are worse off then him ...

And ya

I'm a mess

And sooo confused

>

> yah. it is a very hard fight for many of us. for years i went from pediatricain to pediatricain to GI docter to chinese docter to naturopaths...trying to explain to them in detail how sick my son was.

> me like an idiot thinking they really actually gave a rats ass about my son. they smiled politely sometimes,sometimes not. most took my money and thenÃ‚ refused my calls.

> the MDs.....well they would try to insinuate i was makin everything up or i was confused.

> their is a corner in hell for these docs ...yes move over CPS workers we got some good old docs to add to that mix...

> i tried all the supplements and nasty pharma drugs, to no avail for my son.Ã‚ I can never figure out what kept me goin...except i had/have a stubborn streak of refusing to give up. maybe some primitive part of me like a wild animal I kept on goin.....kept searching....went thru many many dead ends....

> Ã‚

> I found out that no one is a better docter then me when it comes to my son. i know his illnesses symptoms better then anyone...and i learned to trust no one BUT me. I became my sons docter.Ã‚ I learned and learned and still learn....I will be forever trying to heal my son...and when he is healed then i will be chasing someone elses autistic kid to heal their kid......

> Ã‚

> I found out the things inÃ‚ the short version that made big huge gains that stayed...were andy cutler chelation...

> cutting out all grains in the diet. all organic food. all cooked from scratch.Ã‚ delayed food allergy test.

> low oxylate at one point and then low salicycate.

> I kept a bloody journal took me a year to figure things outÃ‚ after Ã‚ carrying that thing around with me every where... i wrote eveeything from what he ate to what his mood was to what he pooped..what it smelled like looked like and size of it.

> I finally was able to pinpoint what foods caused what reactions and that included supps.

> Ã‚

> when things got bad...and as they still do...i go on couple days just low boiled veggies nothing else as i know these are easy to digest and then i carefully add one food at a time back in his diet. i learned to use a pendulum...good old fashion energy testing....that is what the old folks used back int he day....before we had fancy tests..

> Ã‚

> now i am dealing with horrible strep bacteria in my son...so we are back to me searching for the answer to this..

> I still have daysÃ‚ that IÃ‚ lookÃ‚ Ã‚ to Ã‚ the sky and whisperÃ‚ Oh GodÃ‚ .....as i cant evenÃ‚ find the words to say....

> my favorite qoute from winston churchill.....(he must have beenÃ‚ one bad ass dude...)

> he said " When you find yourself goin thru hell.....keep goin"

> and so I say yah....what he said.

> Ã‚

> channa

>

> ________________________________

>

> To: mb12valtrex

> Sent: Friday, March 9, 2012 2:42 AM

> Subject: Staying motivated is hard!

>

> Ã‚

> As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....

>

> So how do we stay motivated?

> How do we know we aren't just loading our kid up on vitamins and making him gag?

> How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???

> Keeping a log shows me how up and down this all is and I'm not sold its worth it ???

>

> I need some motivation and some guidance!

> AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.

>

March 10, 2012

Cami,

I think we all understand your confusion. I specifically have been through what

you are going through. Being a physician trained in mainstream medicine, it was

even harder to accept biomed world. In mainstream medicine, all of this stuff is

quackery. My maternal instincts kept telling me that my child had some medical

problem which was manifesting itself as autism but then his pediatricians and

other docs and especially therapists and teachers continued to convince me that

therapy was the only thing that could get my son better. I used to see how my

son regressed each ear around april/may and then get better in summer and

winter. Then his symptoms will fluctuate all the time. I always thought that if

it is permanent brain damage, then why would he be better one day and worse one

day. Our stroke patients or patients with permanent brain damage either lost

some function or they gained it back with therapy and did not lose the function

again unless they had another insult like stroke or brain injury. So what was

the factor that was affecting my kid or other kids on spectrum that made their

symptoms fluctuate? Then finally I experienced something that really convinced

me. I saw an 18 year old boy admitted in the psychiatric unit, fully verbal, had

a diagnosis of autism. I was impressed that he could communicate so well. He

never received any biomed treatment and told me that speech therapy and school

helped him get his communication skills. Then I realized that the boy was

admitted for an attempted suicide and had a long history of self mutilation. He

was on a whole bunch of antipsychotics, antidepressants and antiseizure meds.

Still it was not the first time he was hospitalized for a suicide attempt. His

arms were full of scars and poor child was aware of what was going on with him

but simply could not control himself. That day I cried so much and I felt that

even if my son finally gained his communication skills, unless I get his system

cleaned, he will end up in a psychiatric facility like that boy. So I completely

agree with Tammy that we want our kids to be healthy overall, not just in one

area. Biomed approach is not dangerous if done properly. I know that a lot of

dans are in this field to make money but then there are plenty who have gone

through the same struggles that we are going through. All we need to do is to

find a sincere doc who is actually willing to get our child better, not his

pockets heavy. None of us want our kids to be in mental institution or another

facility eventually. We are not trying to get our kids to become scientists or

other qualified individuals. Our dream is to get them strong enough to take care

of themselves, protect themselves and survive in this harsh society with minimal

help from others. And who knows our efforts will pay off and some of our kids

will actually be determining the future of this world.

is

March 10, 2012

So here's my take on all this.Do what works.If it's not working, do something else. Research is sooo important and the reason why I say that: you DO know more than your DAN. Your DAN isn't home with you. Your DAN isn't seeing what you are seeing. Your DAN isn't taking the notes that you are. You have to be able to put things together when you have the labs, the notes, the results (or lack of) and you have to be able to consider things your DAN doesn't. You have to be able to be a full partner in your child's care and not leave things up to the DAN. It had to be a partnership.My son is 8. He was diagnosed at 2..5. We started biomed immediately. First on my own doing DAN things and then we saw Dr. Goldberg at 3. Then we left Dr. Goldberg at 4.5 and went to a DAN. I spent all of that time researching. I became very well versed in DAN and got familiar with other protocols. The reason you need to do this: you have to be able to understand what your doc is doing so that you can understand what to throw out. DAN can be soooo expensive until you figure out how to control the money hemorrhaging. I've never continued anything that wasn't doing anything. 2 years of all kinds of diets and such left my son no better or worse but I was definitely poorer. Do what works, throw out the rest. You won't know what's working until you stop something. To this day, I can't remove antivirals. Because I can't remove antivirals, I can't remove the anti fungal. By my son is on very few things. His current list:Vit. C (immune system support but I don't *have* to give it, I choose to)Pregnenelone 1x week (clinically low)Hydrocortisone (adrenals - GH burns adrenals)Valtrex (very viral kid)Diflucan (goes without saying with the Valtrex)Growth hormone (clinically low)Yucca (he has an ammonia problem that is confirmed genetic and through OAT so I just keep him on it, life is better that way and we haven't had any issues since )Lysine (herpes virus issues - although I don't have issues if I run out, I only give it because I want the added help. Giving it doesn't actually change anything behaviorally - again, this is a choice for me.)melatonin (sleep is always an issue)multi (every kid should be on one)Omegas (every kid should be on it)Adderall (5 years of biomed never did anything for his ADHD)That's it. He's not on a diet. He's not on all kinds of supplements and for about 3 years, the only supplements he was on were to help with ADHD symptoms. I got rid of those when we started Adderall. You have to get to what *your* child needs. You simply can't go on all these supplements without understanding why and what and if they are even doing anything. If it's not doing anything, get rid of it. You can always revisit them - which sometimes does help. Sometimes something else needs to be done first in order for it to work.We've done many things. We've chelated, we've been on abx for a year, we've done everything except ivig and Hbot, I think. Some things worked, many things didn't and a lot just helped a bit.It's work. It's hard work. But we can't rely on doctors to figure it out for us. We have to do it ourselves. Does biomed work? For many I think the answer is yes. For us, absolutely. My son would not be where he is today (recovered) if it weren't for biomed. If I take him off the antiviral/antifungal he completely regresses so in my house, no, he wouldn't be better off without it. He wouldn't get better without it. He wouldn't "grow" out of autism.But I can also say that yes, I think some things did get better just with time. The difficulty is figuring out which ones they are.Don't be afraid to stop it all and see what happens. Don't be afraid to start all over from scratch. Don't be afraid to question whether or not something is working. If you question it, find out the answer. Don't continue to load your kid up with things you aren't confident in.My son would probably be worse off if we continued to give him things that weren't working. Some were causing more problems than they were helping. Labs aren't the end all be all of what's going on. YOu have to be able to put *everything* together and make a logical decision. Behavior and physical response should be a big part of the choices you make, not just labs. And also, my suggestion is to try to use more local labs than autism labs. Autism labs cost too much and really don't provide that much useful information. I know the questioning. I've been there. You just have to go into biomed with an open mind but also with clear expectations and a plan for what you do when you don't meet those expectations. In my case, I try just about everything I can afford. I'll do it but I won't go broke doing it and I won't continue to do things that don't work just because someone thinks I should. The ending behavioral result is the main result anyone wants. Not what a lab says. When I rely on labs, I rely on labs that actually tell me something useful. Low thyroid is useful. Knowing my son has low GH is useful. (and the funny thing is that these, for the most part, aren't even behavioral related - they just are and need to be treated). Most information on an OAT is not so useful to me. The only thing it was ever good for was to prove my son can't process fats and proteins very well and no amount of supplementing changed that (confirmed through yasko) and the ammonia problem (also confirmed through yasko). Yeast, I know my son well enough that I can spot yeast in him better than any lab can. Most of the labs are unreliable at best. Wrong at worst. So stick with labs that will tell you something. You are the only person that can determine if those labs are useful. I know someone people can easily live and die by an OAT. In my house, we couldn't (and this was covered by our insurance so it wasn't like we couldn't afford to do it - it just was pointless). It takes a lot of time to figure it out. I know. Just remember to do what works. Throw out the rest. There's no law that says you *have* to do something just because DAN thinks you should. Just make sure you are choosing to do them or not for the right reasons. Chelation absolutely helped in my house. High dose supplements did not. Antivirals did. Diet did not. In my house, my son did not do well with naturals. He did great on the Rx things like LDN. Do what works. I can't say that enough. Don't worry about the teachers and everyone else judging you. If you are doing what works, they'll see the results. If nothing works, then eventually you'll figure that out too.Hope that helps.

~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

Yes I have a Dan for my son and he's done all the tests but when we went over them it didn't make much sense ... And he's always like u can tr this or that... But I feel like sometimes I know more and he's well known ... And he's not motivational or encouraging and I guess I expected that

>

> > As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....

> >

> > So how do we stay motivated?

> > How do we know we aren't just loading our kid up on vitamins and making him gag?

> > How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???

> > Keeping a log shows me how up and down this all is and I'm not sold its worth it ???

> >

> > I need some motivation and some guidance!

> > AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.

> >

>

March 10, 2012

I also had a very sick child when I started biomed....and all out kids our sick to some extent but my son was screaming almost non stop all day and all night. he never slept more then two hours at a time because he was in so much pain....he bashed his head into walls his breath smelled like feces. and i was told to consider putting him in a institution.

so even thou i am goin thru really bad time with my son now.. with his emotional problems caused I believe by bacteria attacking his brain....i am still light years from where we started.

my son is verebal. he sleeps thru night. his tummy flat for the most part. my therapist is no longer talking about me needing to put him in a mental institution.....(my worst nightmare to this day)

he has his good moments that give me hope but also make the bad moments that much more painful as i can see how life could be for him..... I think as many folks said their is no one stop shopping as to what is best for your kid.

every kid has gotten healthier from diffrent methods and it really is a matter of just looking and researching all the diffrent supps and or treatment and trying to use your mom instinct as which one will benefit your specific child.

i tried things that were a comlpete waste of money.....and then i tried things that had me dancing on my couch doin the happy dance....

you are in the beginning it will get easier....i promise.... if you give your kids sympotms it would be easier also for the group to give you advice:)

channsa

To: "mb12valtrex " <mb12valtrex > Cc: "mb12valtrex " <mb12valtrex > Sent: Saturday, March 10, 2012 7:34 AMSubject: Re: Re: Staying motivated is hard!

Honestly. That's the struggle. It's a bit uncertain. I really like you need to do some testing and narrow down the options. I would test mine function, viruses, bacteria. Methylation & the ONE test are really informative. Those should really help you to gain some understanding of what is going on.

I have felt like you have many times. I also have felt like I was going to scream if I had to rub one more cream, give one more supp, read one more medical journal article while googling the terms. I have qindered if i just wasnt parenting well enough, or doing enough therapy. BUT the testing is what keeps me going. It shows me that -yes- this is a health issue. My kid is sick. It gives me a clear path for treatment And it keeps me going. I do it because my kids are sick. Not because I have a promise for recovery but because they are sick and need treatment.

We had a really tough time for the last few years. My son who was doing so well just fell apart within the course of a week and he never came back. Finally we tested for infections, viruses, immune

Function and got our answers. It is scary because we are dealing with tough infections. But at least I know where I'm going now. Which path I'm on. Sometimes we straddle a couple. But thankfully we have each other for support as well. Keep posting. These women will have your back.

Ruth

Sent from my iPhone

I'm definitely a fighter I just want to make sure I'm not fighting the wrong fight...is biomedical just a pipe dream that they use to drain money from all of us hopeful mothers???We are treating his allergies and that I believe in and I have no issues with the supplements.... It's the anti viral and fungus I struggle with.... The r still meds that we r putting into our children's sensitive bodies....And then I read books like the "disconnected kid" and read how traumatic pregnancies cause autism and I was under soooo much stress during the pregnancy and I del so guilty....And the book goes on to say the brain developed more on one side ( right or left) for whatever reason and all u have to do is strengthen the other side off the brain thru exercises and I think is that the route? Or is it vitamins?Or cod liver?Or b12 shots?Or abaOr rdiOr speechAnd then I see myself going crazy... Yet again ... And crying

and worrying .... And my son isn't severe so then I feel guilty because other kids are worse off then him ...And ya I'm a messAnd sooo confused>> yah. it is a very hard fight for many of us. for years i went from pediatricain to pediatricain to GI docter to chinese docter to naturopaths...trying to explain to them in detail how sick my son was.> me like an idiot thinking they really actually gave a rats ass about my son. they smiled politely sometimes,sometimes not. most took my money and thenÃ‚ refused my calls.> the MDs.....well they would try to insinuate i was makin everything up or i was confused.> their is a corner in hell for these docs ...yes move over CPS workers we got some good

old docs to add to that mix...> i tried all the supplements and nasty pharma drugs, to no avail for my son.Ã‚ I can never figure out what kept me goin...except i had/have a stubborn streak of refusing to give up. maybe some primitive part of me like a wild animal I kept on goin.....kept searching....went thru many many dead ends....> Ã‚ > I found out that no one is a better docter then me when it comes to my son. i know his illnesses symptoms better then anyone...and i learned to trust no one BUT me. I became my sons docter.Ã‚ I learned and learned and still learn....I will be forever trying to heal my son...and when he is healed then i will be chasing someone elses autistic kid to heal their kid......> Ã‚ > I found out the things inÃ‚ the short version that made big huge gains that stayed...were andy cutler chelation...> cutting out all grains in the diet. all organic food. all

cooked from scratch.Ã‚ delayed food allergy test.> low oxylate at one point and then low salicycate.> I kept a bloody journal took me a year to figure things outÃ‚ after Ã‚ carrying that thing around with me every where... i wrote eveeything from what he ate to what his mood was to what he pooped..what it smelled like looked like and size of it.> I finally was able to pinpoint what foods caused what reactions and that included supps.> Ã‚ > when things got bad...and as they still do...i go on couple days just low boiled veggies nothing else as i know these are easy to digest and then i carefully add one food at a time back in his diet. i learned to use a pendulum...good old fashion energy testing....that is what the old folks used back int he day....before we had fancy tests..> Ã‚ > now i am dealing with horrible strep bacteria in my son...so we are back to me searching for the

answer to this..> I still have daysÃ‚ that IÃ‚ lookÃ‚ Ã‚ to Ã‚ the sky and whisperÃ‚ Oh GodÃ‚ .....as i cant evenÃ‚ find the words to say....> my favorite qoute from winston churchill.....(he must have beenÃ‚ one bad ass dude...)> he said " When you find yourself goin thru hell.....keep goin"> and so I say yah....what he said.> Ã‚ > channa> > > ________________________________> > To: mb12valtrex > Sent: Friday, March 9, 2012 2:42 AM> Subject: Staying motivated is hard!> > > Ã‚ > As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and

then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....> > So how do we stay motivated?> How do we know we aren't just loading our kid up on vitamins and making him gag?> How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???> Keeping a log shows me how up and down this all is and I'm not sold its worth it ???> > I need some motivation and some guidance!> AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really

confused.>

March 10, 2012

Can somebody plz explain to me , when we did all the test and it showed that my son has virus, metal , gut problem .... And we started to do treatment for all of them and he hasn't respond to any of the treatment then what? We started biomed since he was 2 and now he is 5 still severe and nonverbal. We have been under care of a very well known Dan , but we just don't know why he does't respond.What do you guys do on the situation like this?Lili

From:

cheryl biomed.mom ;

To:

<mb12valtrex >;

Subject:

Re: Staying motivated is hard!

Sent:

Sat, Mar 10, 2012 5:44:11 PM

So here's my take on all this.Do what works.If it's not working, do something else. Research is sooo important and the reason why I say that: you DO know more than your DAN. Your DAN isn't home with you. Your DAN isn't seeing what you are seeing. Your DAN isn't taking the notes that you are. You have to be able to put things together when you have the labs, the notes, the results (or lack of) and you have to be able to consider things your DAN doesn't. You have to be able to be a full partner in your child's care and not leave things up to the DAN. It had to be a partnership.My son is 8. He was diagnosed at 2..5. We started biomed immediately. First on my own doing DAN things and then we saw Dr. Goldberg at 3. Then we left Dr. Goldberg at 4.5 and went to a DAN. I spent all of

that time researching. I became very well versed in DAN and got familiar with other protocols. The reason you need to do this: you have to be able to understand what your doc is doing so that you can understand what to throw out. DAN can be soooo expensive until you figure out how to control the money hemorrhaging. I've never continued anything that wasn't doing anything. 2 years of all kinds of diets and such left my son no better or worse but I was definitely poorer. Do what works, throw out the rest. You won't know what's working until you stop something. To this day, I can't remove antivirals. Because I can't remove antivirals, I can't remove the anti fungal. By my son is on very few things. His current list:Vit. C (immune system support but I don't *have* to give it, I choose to)Pregnenelone 1x week (clinically

low)Hydrocortisone (adrenals - GH burns adrenals)Valtrex (very viral kid)Diflucan (goes without saying with the Valtrex)Growth hormone (clinically low)Yucca (he has an ammonia problem that is confirmed genetic and through OAT so I just keep him on it, life is better that way and we haven't had any issues since )Lysine (herpes virus issues - although I don't have issues if I run out, I only give it because I want the added help. Giving it doesn't actually change anything behaviorally - again, this is a choice for me.)melatonin (sleep is always an issue)multi (every kid should be on one)Omegas (every kid should be on it)Adderall (5 years of biomed never did anything for his ADHD)That's it. He's not on a diet. He's not on all kinds of supplements and for about 3 years, the only supplements

he was on were to help with ADHD symptoms. I got rid of those when we started Adderall. You have to get to what *your* child needs. You simply can't go on all these supplements without understanding why and what and if they are even doing anything. If it's not doing anything, get rid of it. You can always revisit them - which sometimes does help. Sometimes something else needs to be done first in order for it to work.We've done many things. We've chelated, we've been on abx for a year, we've done everything except ivig and Hbot, I think. Some things worked, many things didn't and a lot just helped a bit.It's work. It's hard work. But we can't rely on doctors to figure it out for us. We have to do it ourselves. Does biomed work? For many I think the answer is yes. For us, absolutely. My son would not be where he is today (recovered) if it weren't for

biomed. If I take him off the antiviral/antifungal he completely regresses so in my house, no, he wouldn't be better off without it. He wouldn't get better without it. He wouldn't " grow " out of autism.But I can also say that yes, I think some things did get better just with time. The difficulty is figuring out which ones they are.Don't be afraid to stop it all and see what happens. Don't be afraid to start all over from scratch. Don't be afraid to question whether or not something is working. If you question it, find out the answer. Don't continue to load your kid up with things you aren't confident in.My son would probably be worse off if we continued to give him things that weren't working. Some were causing more problems than they were helping. Labs aren't the end all be all of what's going on. YOu have to be able to put

*everything* together and make a logical decision. Behavior and physical response should be a big part of the choices you make, not just labs. And also, my suggestion is to try to use more local labs than autism labs. Autism labs cost too much and really don't provide that much useful information. I know the questioning. I've been there. You just have to go into biomed with an open mind but also with clear expectations and a plan for what you do when you don't meet those expectations. In my case, I try just about everything I can afford. I'll do it but I won't go broke doing it and I won't continue to do things that don't work just because someone thinks I should. The ending behavioral result is the main result anyone wants. Not what a lab says. When I rely on labs, I rely on labs that actually tell me something useful. Low thyroid is useful. Knowing my son has low GH is useful. (and the funny

thing is that these, for the most part, aren't even behavioral related - they just are and need to be treated). Most information on an OAT is not so useful to me. The only thing it was ever good for was to prove my son can't process fats and proteins very well and no amount of supplementing changed that (confirmed through yasko) and the ammonia problem (also confirmed through yasko). Yeast, I know my son well enough that I can spot yeast in him better than any lab can. Most of the labs are unreliable at best. Wrong at worst. So stick with labs that will tell you something. You are the only person that can determine if those labs are useful. I know someone people can easily live and die by an OAT. In my house, we couldn't (and this was covered by our insurance so it wasn't like we couldn't afford to do it - it just was pointless). It takes a lot of time to figure it out. I know. Just remember to do what

works. Throw out the rest. There's no law that says you *have* to do something just because DAN thinks you should. Just make sure you are choosing to do them or not for the right reasons. Chelation absolutely helped in my house. High dose supplements did not. Antivirals did. Diet did not. In my house, my son did not do well with naturals. He did great on the Rx things like LDN. Do what works. I can't say that enough. Don't worry about the teachers and everyone else judging you. If you are doing what works, they'll see the results. If nothing works, then eventually you'll figure that out too.Hope that helps.

~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

Yes I have a Dan for my son and he's done all the tests but when we went over them it didn't make much sense ... And he's always like u can tr this or that... But I feel like sometimes I know more and he's well known ... And he's not motivational or encouraging and I guess I expected that

>

> > As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....

> >

> > So how do we stay motivated?

> > How do we know we aren't just loading our kid up on vitamins and making him gag?

> > How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???

> > Keeping a log shows me how up and down this all is and I'm not sold its worth it ???

> >

> > I need some motivation and some guidance!

> > AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.

> >

>

March 10, 2012

If you list exactly what problems he has had and what things you have tried treating them with, I think we will all be able to help more.Mom to 5 year-old LiamRe: Staying motivated is hard! Sent:Sat, Mar 10, 2012 5:44:11 PM So here's my take on all this.Do what works.If it's not working, do something else. Research is sooo important and the reason why I say that: you DO know more than your DAN. Your DAN isn't home with you. Your DAN isn't seeing what you are seeing. Your DAN isn't taking the notes that you are. You have to be able to put things together when you have the labs, the notes, the results (or lack of) and you have to be able to consider things your DAN doesn't. You have to be able to be a full partner in your child's care and not leave things up to the DAN. It had to be a partnership.My son is 8. He was diagnosed at 2..5. We started biomed immediately. First on my own doing DAN things and then we saw Dr. Goldberg at 3. Then we left Dr. Goldberg at 4.5 and went to a DAN. I spent all ofthat time researching. I became very well versed in DAN and got familiar with other protocols. The reason you need to do this: you have to be able to understand what your doc is doing so that you can understand what to throw out. DAN can be soooo expensive until you figure out how to control the money hemorrhaging. I've never continued anything that wasn't doing anything. 2 years of all kinds of diets and such left my son no better or worse but I was definitely poorer. Do what works, throw out the rest. You won't know what's working until you stop something. To this day, I can't remove antivirals. Because I can't remove antivirals, I can't remove the anti fungal. By my son is on very few things. His current list:Vit. C (immune system support but I don't *have* to give it, I choose to)Pregnenelone 1x week (clinicallylow)Hydrocortisone (adrenals - GH burns adrenals)Valtrex (very viral kid)Diflucan (goes without saying with the Valtrex)Growth hormone (clinically low)Yucca (he has an ammonia problem that is confirmed genetic and through OAT so I just keep him on it, life is better that way and we haven't had any issues since )Lysine (herpes virus issues - although I don't have issues if I run out, I only give it because I want the added help. Giving it doesn't actually change anything behaviorally - again, this is a choice for me.)melatonin (sleep is always an issue)multi (every kid should be on one)Omegas (every kid should be on it)Adderall (5 years of biomed never did anything for his ADHD)That's it. He's not on a diet. He's not on all kinds of supplements and for about 3 years, the only supplementshe was on were to help with ADHD symptoms. I got rid of those when we started Adderall. You have to get to what *your* child needs. You simply can't go on all these supplements without understanding why and what and if they are even doing anything. If it's not doing anything, get rid of it. You can always revisit them - which sometimes does help. Sometimes something else needs to be done first in order for it to work.We've done many things. We've chelated, we've been on abx for a year, we've done everything except ivig and Hbot, I think. Some things worked, many things didn't and a lot just helped a bit.It's work. It's hard work. But we can't rely on doctors to figure it out for us. We have to do it ourselves. Does biomed work? For many I think the answer is yes. For us, absolutely. My son would not be where he is today (recovered) if it weren't forbiomed. If I take him off the antiviral/antifungal he completely regresses so in my house, no, he wouldn't be better off without it. He wouldn't get better without it. He wouldn't " grow " out of autism.But I can also say that yes, I think some things did get better just with time. The difficulty is figuring out which ones they are.Don't be afraid to stop it all and see what happens. Don't be afraid to start all over from scratch. Don't be afraid to question whether or not something is working. If you question it, find out the answer. Don't continue to load your kid up with things you aren't confident in.My son would probably be worse off if we continued to give him things that weren't working. Some were causing more problems than they were helping. Labs aren't the end all be all of what's going on. YOu have to be able to put*everything* together and make a logical decision. Behavior and physical response should be a big part of the choices you make, not just labs. And also, my suggestion is to try to use more local labs than autism labs. Autism labs cost too much and really don't provide that much useful information. I know the questioning. I've been there. You just have to go into biomed with an open mind but also with clear expectations and a plan for what you do when you don't meet those expectations. In my case, I try just about everything I can afford. I'll do it but I won't go broke doing it and I won't continue to do things that don't work just because someone thinks I should. The ending behavioral result is the main result anyone wants. Not what a lab says. When I rely on labs, I rely on labs that actually tell me something useful. Low thyroid is useful. Knowing my son has low GH is useful. (and the funnything is that these, for the most part, aren't even behavioral related - they just are and need to be treated). Most information on an OAT is not so useful to me. The only thing it was ever good for was to prove my son can't process fats and proteins very well and no amount of supplementing changed that (confirmed through yasko) and the ammonia problem (also confirmed through yasko). Yeast, I know my son well enough that I can spot yeast in him better than any lab can. Most of the labs are unreliable at best. Wrong at worst. So stick with labs that will tell you something. You are the only person that can determine if those labs are useful. I know someone people can easily live and die by an OAT. In my house, we couldn't (and this was covered by our insurance so it wasn't like we couldn't afford to do it - it just was pointless). It takes a lot of time to figure it out. I know. Just remember to do whatworks. Throw out the rest. There's no law that says you *have* to do something just because DAN thinks you should. Just make sure you are choosing to do them or not for the right reasons. Chelation absolutely helped in my house. High dose supplements did not. Antivirals did. Diet did not. In my house, my son did not do well with naturals. He did great on the Rx things like LDN. Do what works. I can't say that enough. Don't worry about the teachers and everyone else judging you. If you are doing what works, they'll see the results. If nothing works, then eventually you'll figure that out too.Hope that helps.~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~ Yes I have a Dan for my son and he's done all the tests but when we went over them it didn't make much sense ... And he's always like u can tr this or that... But I feel like sometimes I know more and he's well known ... And he's not motivational or encouraging and I guess I expected that> > > As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....> > > > So how do we stay motivated?> > How do we know we aren't just loading our kid up on vitamins and making him gag?> > How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???> > Keeping a log shows me how up and down this all is and I'm not sold its worth it ???> > > > I need some motivation and some guidance!> > AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused. > > > >>

March 10, 2012

I seem to b at a weird junction. I have totally given up biomed. We r doing NAET and we have her on an incredibly limited diet of white rice, oats, cooked apples no peel, chicken cooked in water, fish but not salmon and peas. She has gone from being totally hyper, shreaking, banging to being kind of lethargic. Sleeping in the day (she never does that). Stomach up and down bloated. I am wondering... Is she going thru a recovery process? She still has her hands in her mouth so much. Air swallowing. Lots of drool. The NAET doc has been treating her for yeast and sugar.

Just not sure what i should b doing next. I worry about calcium and other minerals. Her appetite is up.Her BMs are much better since stopping biomed.

Sorry for this stream of conscious email.

Sent from Yahoo! Mail on Android

From:

tendai ;

To:

mb12valtrex <mb12valtrex >;

Subject:

Re: Re: Staying motivated is hard!

Sent:

Sat, Mar 10, 2012 3:57:20 PM

Hi CamiSome mum from the Gaps group have found using a therapy called NAET really helpful for their kids allergy and one or two adults on the group have a lot of praise for this therapy and believe it works...Bin thinking of using it but find that Gaps diet itself can be expensive never mind the supplement suggested wth the diet..Sent from my iPod

I'm definitely a fighter I just want to make sure I'm not fighting the wrong fight...is biomedical just a pipe dream that they use to drain money from all of us hopeful mothers???

We are treating his allergies and that I believe in and I have no issues with the supplements.... It's the anti viral and fungus I struggle with.... The r still meds that we r putting into our children's sensitive bodies....

And then I read books like the " disconnected kid " and read how traumatic pregnancies cause autism and I was under soooo much stress during the pregnancy and I del so guilty....

And the book goes on to say the brain developed more on one side ( right or left) for whatever reason and all u have to do is strengthen the other side off the brain thru exercises and I think is that the route?

Or is it vitamins?

Or cod liver?

Or b12 shots?

Or aba

Or rdi

Or speech

And then I see myself going crazy... Yet again ... And crying and worrying .... And my son isn't severe so then I feel guilty because other kids are worse off then him ...

And ya

I'm a mess

And sooo confused

>

> yah. it is a very hard fight for many of us. for years i went from pediatricain to pediatricain to GI docter to chinese docter to naturopaths...trying to explain to them in detail how sick my son was.

> me like an idiot thinking they really actually gave a rats ass about my son. they smiled politely sometimes,sometimes not. most took my money and thenÂ refused my calls.

> the MDs.....well they would try to insinuate i was makin everything up or i was confused.

> their is a corner in hell for these docs ...yes move over CPS workers we got some good old docs to add to that mix...

> i tried all the supplements and nasty pharma drugs, to no avail for my son.Â I can never figure out what kept me goin...except i had/have a stubborn streak of refusing to give up. maybe some primitive part of me like a wild animal I kept on goin.....kept searching....went thru many many dead ends....

> Â

> I found out that no one is a better docter then me when it comes to my son. i know his illnesses symptoms better then anyone...and i learned to trust no one BUT me. I became my sons docter.Â I learned and learned and still learn....I will be forever trying to heal my son...and when he is healed then i will be chasing someone elses autistic kid to heal their kid......

> Â

> I found out the things inÂ the short version that made big huge gains that stayed...were andy cutler chelation...

> cutting out all grains in the diet. all organic food. all cooked from scratch.Â delayed food allergy test.

> low oxylate at one point and then low salicycate.

> I kept a bloody journal took me a year to figure things outÂ after Â carrying that thing around with me every where... i wrote eveeything from what he ate to what his mood was to what he pooped..what it smelled like looked like and size of it.

> I finally was able to pinpoint what foods caused what reactions and that included supps.

> Â

> when things got bad...and as they still do...i go on couple days just low boiled veggies nothing else as i know these are easy to digest and then i carefully add one food at a time back in his diet. i learned to use a pendulum...good old fashion energy testing....that is what the old folks used back int he day....before we had fancy tests..

> Â

> now i am dealing with horrible strep bacteria in my son...so we are back to me searching for the answer to this..

> I still have daysÂ that IÂ lookÂ Â to Â the sky and whisperÂ Oh GodÂ .....as i cant evenÂ find the words to say....

> my favorite qoute from winston churchill.....(he must have beenÂ one bad ass dude...)

> he said " When you find yourself goin thru hell.....keep goin "

> and so I say yah....what he said.

> Â

> channa

>

> ________________________________

>

> To: mb12valtrex

> Sent: Friday, March 9, 2012 2:42 AM

> Subject: Staying motivated is hard!

>

> Â

> As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....

>

> So how do we stay motivated?

> How do we know we aren't just loading our kid up on vitamins and making him gag?

> How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???

> Keeping a log shows me how up and down this all is and I'm not sold its worth it ???

>

> I need some motivation and some guidance!

> AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.

>

March 10, 2012

well for me i give something six months if my kid isnt showing any improvement i move on to next thing...drooling i think metals....and a kid being tired i think thyroid or adrenals....

is she on enzymes?

To: "mb12valtrex@yahoogroups com" <mb12valtrex >; "tendaimatambanadzo@..." Sent: Saturday, March 10, 2012 5:34 PMSubject: Re: Re: Staying motivated is hard!

I seem to b at a weird junction. I have totally given up biomed. We r doing NAET and we have her on an incredibly limited diet of white rice, oats, cooked apples no peel, chicken cooked in water, fish but not salmon and peas. She has gone from being totally hyper, shreaking, banging to being kind of lethargic. Sleeping in the day (she never does that). Stomach up and down bloated. I am wondering... Is she going thru a recovery process? She still has her hands in her mouth so much. Air swallowing. Lots of drool. The NAET doc has been treating her for yeast and sugar.Just not sure what i should b doing next. I worry about calcium and other minerals. Her appetite is up.Her BMs are much better since stopping biomed.Sorry for this stream of conscious email.

Sent from Yahoo! Mail on Android

; To: mb12valtrex <mb12valtrex >; Subject: Re: Re: Staying motivated is hard! Sent: Sat, Mar 10, 2012 3:57:20 PM

Hi Cami

Some mum from the Gaps group have found using a therapy called NAET really helpful for their kids allergy and one or two adults on the group have a lot of praise for this therapy and believe it works...

Bin thinking of using it but find that Gaps diet itself can be expensive never mind the supplement suggested wth the diet..

Sent from my iPod

I'm definitely a fighter I just want to make sure I'm not fighting the wrong fight...is biomedical just a pipe dream that they use to drain money from all of us hopeful mothers???We are treating his allergies and that I believe in and I have no issues with the supplements.... It's the anti viral and fungus I struggle with.... The r still meds that we r putting into our children's sensitive bodies....And then I read books like the "disconnected kid" and read how traumatic pregnancies cause autism and I was under soooo much stress during the pregnancy and I del so guilty....And the book goes on to say the brain developed more on one side ( right or left) for whatever reason and all u have to do is strengthen the other side off the brain thru exercises and I think is that the route? Or is it vitamins?Or cod liver?Or b12 shots?Or abaOr rdiOr speechAnd then I see myself going crazy... Yet again ... And crying

and worrying .... And my son isn't severe so then I feel guilty because other kids are worse off then him ...And ya I'm a messAnd sooo confused>> yah. it is a very hard fight for many of us. for years i went from pediatricain to pediatricain to GI docter to chinese docter to naturopaths...trying to explain to them in detail how sick my son was.> me like an idiot thinking they really actually gave a rats ass about my son. they smiled politely sometimes,sometimes not. most took my money and thenÃ‚ refused my calls.> the MDs.....well they would try to insinuate i was makin everything up or i was confused.> their is a corner in hell for these docs ...yes move over CPS workers we got some good old docs to add to that mix...> i tried all the supplements and nasty pharma drugs, to no avail

for my son.Ã‚ I can never figure out what kept me goin...except i had/have a stubborn streak of refusing to give up. maybe some primitive part of me like a wild animal I kept on goin.....kept searching....went thru many many dead ends....> Ã‚ > I found out that no one is a better docter then me when it comes to my son. i know his illnesses symptoms better then anyone...and i learned to trust no one BUT me. I became my sons docter.Ã‚ I learned and learned and still learn....I will be forever trying to heal my son...and when he is healed then i will be chasing someone elses autistic kid to heal their kid......> Ã‚ > I found out the things inÃ‚ the short version that made big huge gains that stayed...were andy cutler chelation...> cutting out all grains in the diet. all organic food. all cooked from scratch.Ã‚ delayed food allergy test.> low oxylate at one point and then low

salicycate.> I kept a bloody journal took me a year to figure things outÃ‚ after Ã‚ carrying that thing around with me every where... i wrote eveeything from what he ate to what his mood was to what he pooped..what it smelled like looked like and size of it.> I finally was able to pinpoint what foods caused what reactions and that included supps.> Ã‚ > when things got bad...and as they still do...i go on couple days just low boiled veggies nothing else as i know these are easy to digest and then i carefully add one food at a time back in his diet. i learned to use a pendulum...good old fashion energy testing....that is what the old folks used back int he day....before we had fancy tests..> Ã‚ > now i am dealing with horrible strep bacteria in my son...so we are back to me searching for the answer to this..> I still have daysÃ‚ that IÃ‚ lookÃ‚ Ã‚ to Ã‚ the sky

and whisperÃ‚ Oh GodÃ‚ .....as i cant evenÃ‚ find the words to say....> my favorite qoute from winston churchill.....(he must have beenÃ‚ one bad ass dude...)> he said " When you find yourself goin thru hell.....keep goin"> and so I say yah....what he said.> Ã‚ > channa> > > ________________________________> > To: mb12valtrex > Sent: Friday, March 9, 2012 2:42 AM> Subject: Staying motivated is hard!> > > Ã‚ > As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan

doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....> > So how do we stay motivated?> How do we know we aren't just loading our kid up on vitamins and making him gag?> How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???> Keeping a log shows me how up and down this all is and I'm not sold its worth it ???> > I need some motivation and some guidance!> AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.>

March 10, 2012

as i said there usually is no easy fix with most kids that are really sick with complex issues.

i remember goin to one naturopath...she was really cocky talkin about testing him for his food allergies and thyriod....i was so happy to be giiuded by someone....got the delayed food allergy test. yay!

cut out all the foods he was severely allergic too! and guess what?? he was still in severe gut pain.

my naturopath docter got really nasty when i kept askin her why he wasnt getting better...and she had to much ego to tell me taht she didnt know.

well i found out the hard way. food allergys are one part of it.... my son had severe gut damage so i had to cut out all grains even thou he wasnt allergic to it....

i had to cut out high oxylate foods.....and after careful jornaling i had come to find out he coulnt tolerate friuts either even thou he wasnt allergic to it.

no DAN docter is gonna take the time to figure all this stuff out....and if he will then God bless you for bein so lucky.

this kind of stuff most folks have to figure out on their own by journaling everything their kid eats and behaviors and bowel movements day in and day out.

and you cant treat for everything at once or you wont know which one is helping!

try one thing at a time! work on diet first ...then add in supps one at a time...

for me treating with andy cutler chelation and diet were the first things i did that made diffrence

channa

To: mb12valtrex Sent: Saturday, March 10, 2012 5:17 PMSubject: Re: Staying motivated is hard!

If you list exactly what problems he has had and what things you have tried treating them with, I think we will all be able to help more.Mom to 5 year-old Liam Re: Staying motivated is hard! Sent: Sat, Mar 10, 2012 5:44:11 PM

So here's my take on all this.

Do what works.

If it's not working, do something else. Research is sooo important and the reason why I say that: you DO know more than your DAN. Your DAN isn't home with you. Your DAN isn't seeing what you are seeing. Your DAN isn't taking the notes that you are. You have to be able to put things together when you have the labs, the notes, the results (or lack of) and you have to be able to consider things your DAN doesn't. You have to be able to be a full partner in your child's care and not leave things up to the DAN. It had to be a partnership.

My son is 8. He was diagnosed at 2..5. We started biomed immediately. First on my own doing DAN things and then we saw Dr. Goldberg at 3. Then we left Dr. Goldberg at 4.5 and went to a DAN. I spent all of that time researching. I became very well versed in DAN and got familiar with other protocols. The reason you need to do this: you have to be able to understand what your doc is doing so that you can understand what to throw out. DAN can be soooo expensive until you figure out how to control the money hemorrhaging.

I've never continued anything that wasn't doing anything. 2 years of all kinds of diets and such left my son no better or worse but I was definitely poorer. Do what works, throw out the rest. You won't know what's working until you stop something.

To this day, I can't remove antivirals. Because I can't remove antivirals, I can't remove the anti fungal. By my son is on very few things. His current list:

Vit. C (immune system support but I don't *have* to give it, I choose to)

Pregnenelone 1x week (clinically low)

Hydrocortisone (adrenals - GH burns adrenals)

Valtrex (very viral kid)

Diflucan (goes without saying with the Valtrex)

Growth hormone (clinically low)

Yucca (he has an ammonia problem that is confirmed genetic and through OAT so I just keep him on it, life is better that way and we haven't had any issues since )

Lysine (herpes virus issues - although I don't have issues if I run out, I only give it because I want the added help. Giving it doesn't actually change anything behaviorally - again, this is a choice for me.)

melatonin (sleep is always an issue)

multi (every kid should be on one)

Omegas (every kid should be on it)

Adderall (5 years of biomed never did anything for his ADHD)

That's it. He's not on a diet. He's not on all kinds of supplements and for about 3 years, the only supplements he was on were to help with ADHD symptoms. I got rid of those when we started Adderall. You have to get to what *your* child needs. You simply can't go on all these supplements without understanding why and what and if they are even doing anything. If it's not doing anything, get rid of it. You can always revisit them - which sometimes does help. Sometimes something else needs to be done first in order for it to work.

We've done many things. We've chelated, we've been on abx for a year, we've done everything except ivig and Hbot, I think. Some things worked, many things didn't and a lot just helped a bit.

It's work. It's hard work. But we can't rely on doctors to figure it out for us. We have to do it ourselves. Does biomed work? For many I think the answer is yes. For us, absolutely. My son would not be where he is today (recovered) if it weren't for biomed. If I take him off the antiviral/antifungal he completely regresses so in my house, no, he wouldn't be better off without it. He wouldn't get better without it. He wouldn't "grow" out of autism.

But I can also say that yes, I think some things did get better just with time. The difficulty is figuring out which ones they are.

Don't be afraid to stop it all and see what happens. Don't be afraid to start all over from scratch. Don't be afraid to question whether or not something is working. If you question it, find out the answer. Don't continue to load your kid up with things you aren't confident in.

My son would probably be worse off if we continued to give him things that weren't working. Some were causing more problems than they were helping. Labs aren't the end all be all of what's going on. YOu have to be able to put *everything* together and make a logical decision. Behavior and physical response should be a big part of the choices you make, not just labs. And also, my suggestion is to try to use more local labs than autism labs. Autism labs cost too much and really don't provide that much useful information.

I know the questioning. I've been there. You just have to go into biomed with an open mind but also with clear expectations and a plan for what you do when you don't meet those expectations. In my case, I try just about everything I can afford. I'll do it but I won't go broke doing it and I won't continue to do things that don't work just because someone thinks I should. The ending behavioral result is the main result anyone wants. Not what a lab says. When I rely on labs, I rely on labs that actually tell me something useful. Low thyroid is useful. Knowing my son has low GH is useful. (and the funny thing is that these, for the most part, aren't even behavioral related - they just are and need to be treated). Most information on an OAT is not so useful to me. The only thing it was ever good for was to prove my son can't process fats and proteins very well and no amount of supplementing changed that (confirmed through yasko) and the ammonia problem

(also confirmed through yasko). Yeast, I know my son well enough that I can spot yeast in him better than any lab can. Most of the labs are unreliable at best. Wrong at worst. So stick with labs that will tell you something. You are the only person that can determine if those labs are useful. I know someone people can easily live and die by an OAT. In my house, we couldn't (and this was covered by our insurance so it wasn't like we couldn't afford to do it - it just was pointless).

It takes a lot of time to figure it out. I know. Just remember to do what works. Throw out the rest. There's no law that says you *have* to do something just because DAN thinks you should. Just make sure you are choosing to do them or not for the right reasons. Chelation absolutely helped in my house. High dose supplements did not. Antivirals did. Diet did not. In my house, my son did not do well with naturals. He did great on the Rx things like LDN.

Do what works. I can't say that enough. Don't worry about the teachers and everyone else judging you. If you are doing what works, they'll see the results. If nothing works, then eventually you'll figure that out too.

Hope that helps.

~ Antiviral Therapy 101~

~ Make a biomed book ~

~ gryffinstail.wordpress.com ~

~ @Gryffins_Tail ~

Yes I have a Dan for my son and he's done all the tests but when we went over them it didn't make much sense ... And he's always like u can tr this or that... But I feel like sometimes I know more and he's well known ... And he's not motivational or encouraging and I guess I expected that> > > As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....> > > > So how do we stay motivated?> > How do we know we aren't just loading our kid up on vitamins and making him gag?> > How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???> > Keeping a log shows me how up and down this all is and I'm not sold its worth it ???> > > > I need some motivation and some guidance!> > AND.... Not to mention the

public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused. > > > >>

March 11, 2012

I am a strong believer in an infectious origin for nearly all disease. I

believe the nutritional deficiencies and resulting toxicities are secondary. If

you are already working with dietary interventions and you did not see much from

valtrex and diflucan, ask to move on to antibiotics or antiparasitics. My son

responds well to both. Both have improved sleep. Antibiotics increase

cognitive function, fine motor skills and eliminate agressive or moody behaviors

and reuce OCD. Antiparasitics improve motor function, balance, sound

sensitivity, hyperactivity, both expressive and receptive language, bathroom

skills and appropriate play skills and imitation skills. If the sleep issues

are every day, consider antibiotics next. If sleep issues fluctuate with full

moon, go for antiparasitics. My DAN has rxed augmentin, zithromax, and bactrim

for my son. We have since taken him to a LLMD for fulltime antibiotics. For

antiparasitics, my DAN has rxed flagyl, alinia and tindamax. We have used

extensive antiparasitics but most of them have been beyond DAN. If you have

success with an antibiotic or an antiparasitic, considr trying another med in

the same categoryto see if you get a better response. And for treating

pathogens, treat for a long enough trial to decide if something is working, like

at least a month. Also, start meds on1/4 dose, once daily in the AM and

increase over a week if tolerated.

>

> Can somebody plz explain to me , when we did all the test and it showed that

my son has virus, metal , gut problem .... And we started to do treatment for

all of them and he hasn & #39;t respond to any of the treatment then what? We

started biomed since he was 2 and now he is 5 still severe and nonverbal. We

have been under care of a very well known Dan , but we just don & #39;t know why

he does & #39;t respond.

> What do you guys do on the situation like this?

>

> Lili

>

March 11, 2012

I think that, in many cases, this is also diagnostic. I could mean that we are missing some underlying problem. Or, possibly we aren't addressing the issue in a way that works for our kids. WE went over two years working on the gut, metals, neurotransmitter problems, nutrition and diet. And, during that time, it was all a bandaid. My son was having small improvements but nothing lasting or substantial. Now we know we have strep, mycoplasma Pneumonia, and lyme, and viruses, too. We aren't probably going to get anywhere until we address these. Viruses and bacteria bind to metals, so we are going to have a hard time reducing that load until we clear the bugs. Methylation is key to all detox, so a critical piece. We have especially difficult genes. It will be harder for us, but I am hopeful that we can achieve health.Have you checked for infections, immune function? Lots of DANS don't do this, and the research on this is developing. But, I do think it is a key for many kids. And, I think one other thing to think about is how all this interacts. Some DANS do a protocol and hope it works - for example chelation. But they aren't looking at the methylation cycle and how much sulfur a child can tolerate. Also, are detox pathways open? Finally, I know may people who have tried one solution to a problem without success, and then they try another solution that works. Some people don't do well on a traditional DAN approach, but another one, like homeopathy, works great. IT is a bit of trial and error, because the science is not felly there and our kids are so individual. BUt, I think if your testing shows health issues, it is worth it to find effective ways to treat those, that work for your kid. If your DAN is stuck, I'm hoping he/she would keep digging. If not, I'd do a bunch of research, tap into the smart people on these groups, and possibly find another doc.It can be discouraging. We've been at this for 8 year snow. And, I'd be lying if I said I didn't have times (many) where I've gotten discouraged. During those times, I do what I can manage. THen, I get reinvigorated and go at it again. I pray a lot, too, for strength, wisdom, and insight. It really helps. I honestly pray for everyone who is struggling with these issues. We all need a little extra boost now and then. I will be praying for your little one. HTH, RuthCan somebody plz explain to me , when we did all the test and it showed that my son has virus, metal , gut problem .... And we started to do treatment for all of them and he hasn't respond to any of the treatment then what? We started biomed since he was 2 and now he is 5 still severe and nonverbal. We have been under care of a very well known Dan , but we just don't know why he does't respond.What do you guys do on the situation like this?Lili

From:

cheryl biomed.mom ;

To:

<mb12valtrex >;

Subject:

Re: Staying motivated is hard!

Sent:

Sat, Mar 10, 2012 5:44:11 PM

So here's my take on all this.Do what works.If it's not working, do something else. Research is sooo important and the reason why I say that: you DO know more than your DAN. Your DAN isn't home with you. Your DAN isn't seeing what you are seeing. Your DAN isn't taking the notes that you are. You have to be able to put things together when you have the labs, the notes, the results (or lack of) and you have to be able to consider things your DAN doesn't. You have to be able to be a full partner in your child's care and not leave things up to the DAN. It had to be a partnership.My son is 8. He was diagnosed at 2..5. We started biomed immediately. First on my own doing DAN things and then we saw Dr. Goldberg at 3. Then we left Dr. Goldberg at 4.5 and went to a DAN. I spent all of

that time researching. I became very well versed in DAN and got familiar with other protocols. The reason you need to do this: you have to be able to understand what your doc is doing so that you can understand what to throw out. DAN can be soooo expensive until you figure out how to control the money hemorrhaging. I've never continued anything that wasn't doing anything. 2 years of all kinds of diets and such left my son no better or worse but I was definitely poorer. Do what works, throw out the rest. You won't know what's working until you stop something. To this day, I can't remove antivirals. Because I can't remove antivirals, I can't remove the anti fungal. By my son is on very few things. His current list:Vit. C (immune system support but I don't *have* to give it, I choose to)Pregnenelone 1x week (clinically

low)Hydrocortisone (adrenals - GH burns adrenals)Valtrex (very viral kid)Diflucan (goes without saying with the Valtrex)Growth hormone (clinically low)Yucca (he has an ammonia problem that is confirmed genetic and through OAT so I just keep him on it, life is better that way and we haven't had any issues since )Lysine (herpes virus issues - although I don't have issues if I run out, I only give it because I want the added help. Giving it doesn't actually change anything behaviorally - again, this is a choice for me.)melatonin (sleep is always an issue)multi (every kid should be on one)Omegas (every kid should be on it)Adderall (5 years of biomed never did anything for his ADHD)That's it. He's not on a diet. He's not on all kinds of supplements and for about 3 years, the only supplements

he was on were to help with ADHD symptoms. I got rid of those when we started Adderall. You have to get to what *your* child needs. You simply can't go on all these supplements without understanding why and what and if they are even doing anything. If it's not doing anything, get rid of it. You can always revisit them - which sometimes does help. Sometimes something else needs to be done first in order for it to work.We've done many things. We've chelated, we've been on abx for a year, we've done everything except ivig and Hbot, I think. Some things worked, many things didn't and a lot just helped a bit.It's work. It's hard work. But we can't rely on doctors to figure it out for us. We have to do it ourselves. Does biomed work? For many I think the answer is yes. For us, absolutely. My son would not be where he is today (recovered) if it weren't for

biomed. If I take him off the antiviral/antifungal he completely regresses so in my house, no, he wouldn't be better off without it. He wouldn't get better without it. He wouldn't "grow" out of autism.But I can also say that yes, I think some things did get better just with time. The difficulty is figuring out which ones they are.Don't be afraid to stop it all and see what happens. Don't be afraid to start all over from scratch. Don't be afraid to question whether or not something is working. If you question it, find out the answer. Don't continue to load your kid up with things you aren't confident in.My son would probably be worse off if we continued to give him things that weren't working. Some were causing more problems than they were helping. Labs aren't the end all be all of what's going on. YOu have to be able to put

*everything* together and make a logical decision. Behavior and physical response should be a big part of the choices you make, not just labs. And also, my suggestion is to try to use more local labs than autism labs. Autism labs cost too much and really don't provide that much useful information. I know the questioning. I've been there. You just have to go into biomed with an open mind but also with clear expectations and a plan for what you do when you don't meet those expectations. In my case, I try just about everything I can afford. I'll do it but I won't go broke doing it and I won't continue to do things that don't work just because someone thinks I should. The ending behavioral result is the main result anyone wants. Not what a lab says. When I rely on labs, I rely on labs that actually tell me something useful. Low thyroid is useful. Knowing my son has low GH is useful. (and the funny

thing is that these, for the most part, aren't even behavioral related - they just are and need to be treated). Most information on an OAT is not so useful to me. The only thing it was ever good for was to prove my son can't process fats and proteins very well and no amount of supplementing changed that (confirmed through yasko) and the ammonia problem (also confirmed through yasko). Yeast, I know my son well enough that I can spot yeast in him better than any lab can. Most of the labs are unreliable at best. Wrong at worst. So stick with labs that will tell you something. You are the only person that can determine if those labs are useful. I know someone people can easily live and die by an OAT. In my house, we couldn't (and this was covered by our insurance so it wasn't like we couldn't afford to do it - it just was pointless). It takes a lot of time to figure it out. I know. Just remember to do what

works. Throw out the rest. There's no law that says you *have* to do something just because DAN thinks you should. Just make sure you are choosing to do them or not for the right reasons. Chelation absolutely helped in my house. High dose supplements did not. Antivirals did. Diet did not. In my house, my son did not do well with naturals. He did great on the Rx things like LDN. Do what works. I can't say that enough. Don't worry about the teachers and everyone else judging you. If you are doing what works, they'll see the results. If nothing works, then eventually you'll figure that out too.Hope that helps.

<PastedGraphic-3.tiff>~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

Yes I have a Dan for my son and he's done all the tests but when we went over them it didn't make much sense ... And he's always like u can tr this or that... But I feel like sometimes I know more and he's well known ... And he's not motivational or encouraging and I guess I expected that

>

> > As we introduce each new supplement or therapy we get so excited... And for many of the supplements we see gains and then we see either regression or return to what he was before. Part of me feels the gains we see are just coincidental and just gains from growing up or aba or speech and not really the biomedical. His Dan doctor is also so wishy washy because really there is no concrete evidence for the biomedical and what works for one kid doesn't work for another....

> >

> > So how do we stay motivated?

> > How do we know we aren't just loading our kid up on vitamins and making him gag?

> > How do we know Dan doctors aren't just making a ton of money off our hope to cure our kid???

> > Keeping a log shows me how up and down this all is and I'm not sold its worth it ???

> >

> > I need some motivation and some guidance!

> > AND.... Not to mention the public school teachers think biomedical is a waste of a time and they almost look down on u for doing it....I'm really confused.

> >

>

March 11, 2012

Beautifully written, is.

>

> Cami,

> I think we all understand your confusion. I specifically have been through

what you are going through. Being a physician trained in mainstream medicine, it

was even harder to accept biomed world. In mainstream medicine, all of this

stuff is quackery. My maternal instincts kept telling me that my child had some

medical problem which was manifesting itself as autism but then his

pediatricians and other docs and especially therapists and teachers continued to

convince me that therapy was the only thing that could get my son better. I used

to see how my son regressed each ear around april/may and then get better in

summer and winter. Then his symptoms will fluctuate all the time. I always

thought that if it is permanent brain damage, then why would he be better one

day and worse one day. Our stroke patients or patients with permanent brain

damage either lost some function or they gained it back with therapy and did not

lose the function again unless they had another insult like stroke or brain

injury. So what was the factor that was affecting my kid or other kids on

spectrum that made their symptoms fluctuate? Then finally I experienced

something that really convinced me. I saw an 18 year old boy admitted in the

psychiatric unit, fully verbal, had a diagnosis of autism. I was impressed that

he could communicate so well. He never received any biomed treatment and told me

that speech therapy and school helped him get his communication skills. Then I

realized that the boy was admitted for an attempted suicide and had a long

history of self mutilation. He was on a whole bunch of antipsychotics,

antidepressants and antiseizure meds. Still it was not the first time he was

hospitalized for a suicide attempt. His arms were full of scars and poor child

was aware of what was going on with him but simply could not control himself.

That day I cried so much and I felt that even if my son finally gained his

communication skills, unless I get his system cleaned, he will end up in a

psychiatric facility like that boy. So I completely agree with Tammy that we

want our kids to be healthy overall, not just in one area. Biomed approach is

not dangerous if done properly. I know that a lot of dans are in this field to

make money but then there are plenty who have gone through the same struggles

that we are going through. All we need to do is to find a sincere doc who is

actually willing to get our child better, not his pockets heavy. None of us want

our kids to be in mental institution or another facility eventually. We are not

trying to get our kids to become scientists or other qualified individuals. Our

dream is to get them strong enough to take care of themselves, protect

themselves and survive in this harsh society with minimal help from others. And

who knows our efforts will pay off and some of our kids will actually be

determining the future of this world.

> is

>

March 11, 2012

thank you guys so muchwe are doing classical homeopathy for more than a year with no result and I tried to pick the best that people were talking about and still no result ( now they want to do CEASE protocol for him!). the reason I haven't give up is because as you said I do believe there is a underlying problem and until it is solved we won't get any where ,I just don't know what that is, we worked on his gut for years with medication like diflucan, ketoconazole, amph B ... for bacteria we did flagyl we did biofilm protocol , we did valtrex, we did MB12 ,enhansa and all the supplement you can think of we tried ( I did not do them at the same time ,it was introduced one by one and also I removed them after a while to see if there is any

changes) we did diet and etc.and the problem is based on the test he is yeasty, viral with high metal kid.right now we are doing AC chelation ( still no major improvment) as my last hope, I just can't give up because Of his severity. so maybe lyme would be next but honestly spending all those money with no result is not easy ,and I just don't know how much more money I have to investigate to find out his problem and If the DAN doc is confused with his situation and can't figure out I'm way more confused about his situation, I did blood test recently to find out about his thyroid and strep( strep was negative before) and my next treatment is for parasite . and I'm praying for him too,please let me know of any specific test we can do to address any other problemthank you guys againLili To: mb12valtrex Sent: Sunday, March 11, 2012 12:16 PM Subject: Re: Staying motivated is hard!

I think that, in many cases, this is also diagnostic. I could mean that we are missing some underlying problem. Or, possibly we aren't addressing the issue in a way that works for our kids. WE went over two years working on the gut, metals, neurotransmitter problems, nutrition and diet. And, during that time, it was all a bandaid. My son was having small improvements but nothing lasting or substantial. Now we know we have strep, mycoplasma Pneumonia, and lyme, and viruses, too. We aren't probably going to get anywhere until we address these. Viruses and bacteria bind to metals, so we are going to have a hard time reducing that load until we clear the bugs. Methylation is key to all detox, so a critical piece. We have especially difficult genes. It will be harder for us, but I am hopeful that we can achieve health.Have you checked for infections, immune

function? Lots of DANS don't do this, and the research on this is developing. But, I do think it is a key for many kids. And, I think one other thing to think about is how all this interacts. Some DANS do a protocol and hope it works - for example chelation. But they aren't looking at the methylation cycle and how much sulfur a child can tolerate. Also, are detox pathways open? Finally, I know may people who have tried one solution to a problem without success, and then they try another solution that works. Some people don't do well on a traditional DAN approach, but another one, like homeopathy, works great. IT is a bit of trial and error, because the science is not felly there and our kids are so individual. BUt, I think if your testing shows health issues, it is worth it to find effective ways to treat those, that work for your kid. If your DAN is stuck,

I'm hoping he/she would keep digging. If not, I'd do a bunch of research, tap into the smart people on these groups, and possibly find another doc.It can be discouraging. We've been at this for 8 year snow. And, I'd be lying if I said I didn't have times (many) where I've gotten discouraged. During those times, I do what I can manage. THen, I get reinvigorated and go at it again. I pray a lot, too, for strength, wisdom, and insight. It really helps. I honestly pray for everyone who is struggling with these issues. We all need a little extra boost now and then. I will be praying for your little one. HTH, RuthCan somebody plz explain to me , when we did all the test and it showed that my son has virus, metal , gut problem .... And we started to do treatment for all of them and he hasn't respond to any of the treatment then what? We started biomed since he was 2 and now he is 5 still severe and nonverbal. We have been under care of a very well known Dan , but we just don't know why he does't respond.What do you guys do on the situation like this?Lili