Re: GUARANTEE me you are right!

[Guest guest]

Wow, what an unfair demand. I think the thing that you are missing here is the fact that every child is different. Every child is going to react differently to each of the treatments you listed. Some kids heal seemingly over night and some never heal at all. There are no guarantees in life, or in medicine. The parent with the recovered child is Stan Kurtz. We all want what he has, some of of us feel like that day may never come. Some of us have tried (and it did not work) to do the treatment to the tee as Stan did for Ethan. The point is that your child will heal from a treatment because it is the correct treatment for him/her. You need to try things as we all have, and get some tests done to start your road map.

You can't ask for the magic pill, key, button, or puzzle piece for your kid from us, we obviously don't know the answer for your kid. We're all here trying to find our own magic. Hopefully, in the process, feed off of each others ideas.Sorry, No guarantees,

Subject: GUARANTEE me you are right!To: mb12 valtrex Date: Monday, November 3, 2008, 4:23 PM

First thank all of you for your encouraging words and private emails. Okay so I have been reading and it seems nobody agrees. How do I decide which therapy is correct you all disagree. Whose child is recovered here? Who wants to decide which is the right therapy and GUARANTEE me you are right! So much makes sense and yet so little does! You say MB12 Japan studies say COQ10 is much better. Some say vitamin D, Marshall Protocol says that is what harmful. Valtrex or natural antivirals? Is it HHV-6 or Lyme or Parvo B19? Is it liver problems? If my child is infected with a virus what really works? Oxalates??? SCD??? Probiotics?? Glutathione? ? Some say great ! some literature burns brain cells HBOT????? Miracle or free radicals and oxidative stress Epson salt baths? I thought sulfur was a big no no in autoimmunity issues! YEAST!!!!!WHO AND WHAT ARE RIGHT I could keep going I've never seen so many

alternatives. Finally do most of you sell something connected to Autism I never got so any emails to buy or rent stuff? I do not mean to offend anyone!!!! I need to help my son

[Guest guest]

I agree. Every child is different. My kiddo doesn't react the same way as any of my friends kiddos do to different interventions. Nor does my kiddo have all the same issues that theirs do. It's not hit and miss, but finding out what works for others is a great starting place. After doubting the diet, I must say that now I'm a strong supporter of it. GF/CF is working so well for my kiddo now (after about 6 weeks of it not working so well). I wish I had an answer about a magic puzzle piece, but I don't even have one for my kiddo yet, and there's probably more than one piece missing. Start testing to give you a baseline and directions where to go. If you go to www.autism.com you can listen to some of the previous Defeat Autism Now! conference speakers. I do not sell or rent anything. I am just a mom trying to heal her kid.

IHTH

(by the way, I didn't get any solicitations after joining this group)

[Guest guest]

Hi ,

I agree that these are complex, and seemingly contradictory issues.

The landscape is seemingly full of quicksand. Buffy has hit the nail

on the head, so to speak. Your child is the ultimate labratory. I

recommend that you sequence-in and out different treatments,

supplements, diets, and medications, to see what works best for your

child and your financials.

As for me, I'm very excited to see how my son responds to TCM. We

have an appointment next Saturday.

--penumbra

> I need to help my son

>

>

[Guest guest]

I mostly lurk on this board but your post caught my eye and I had to

respond.

First, I haven't gotten any emails to buy or rent any stuff. Are you

sure it came as a result of joining this particular Yahoo board?

Second, if you meet one child with autism all you've done is meet one

child with autism. This is such an individual condition. Some

autistic children are completely verbal with very poor social skills

and some children have great eye contact but no verbal language at

all. There are many variations.

Autism reminds me of cancer in a way. Not that autism is cancer but

there is no one single treatment for cancer just as there is no one

single treatment for autism. There is no single thing called

cancer. There is no single thing called autism - I think there are

subsets within autism. The treatment for cancer varies depending on

what the individuals issues are. Some cancer patients may need

surgery. Others may need radiation. Still others may need

chemotherapy. Some may only need strong prescription meds. Others

may need all of the treatments mentioned. The same thing with

autism. There are children who recover after going on the gfcf diet.

Some kids are more heavy metal kids. Others have viral issues. For

some doing antifungals for yeast seems to lead to recovery. You have

to find the right combination for your child.

We did the gfcf diet. It helped a lot but it didn't lead to

recovery. We did HBOT. Nothing much to report there. We tried

various supplements and they helped quite a bit. Now we're doing

Valtrex with Diflucan and I'm seeing amazing things. We're getting

our first big wow's with this treatment. I expect when we do

chelation we'll have good results too. The point is to keep going

when you see results. I wish my child was one of those kids you read

about where you do one treatment and poof everything is ok but it

doesn't work like that. For most of us the road to recovery is long

and hard. But it's so worth it. My daughter is only 3 but she's now

asking me questions. When she was diagnosed at 2 I never thought

that would happen but it has.

There's no guarantee the things I've tried with my daughter will work

with your child. His biochemistry is different from my child's.

There are no guarantees in life and I'm sure you know that. But I'm

one of those people that if I talk to 100 people and 90 of them tell

me that nothing can be done for autism but the last 10 people

say " yes, I recovered my child and here's how I did it " , I'm going to

listen to those 10 people and I am going try the things those 10

people did. Now I'm going to do those things after a lot of research

and after careful consideration but my motto is nothing ventured

nothing gained. You have to try different things, do the tests,

carefully monitor and log the results you see. Keeping a log and

doing regular lab tests showed us the way ahead. I wish there was an

easy answer but there isn't. We're pioneers. Maybe in the next 20-

25 years all this effort most of us are putting into recovering our

children through biomed will lead to an easier clearer road for the

next generation of parents.

N. Santos

>

> First thank all of you for your encouraging words and private

emails.

> Okay so I have been reading and it seems nobody agrees. How do I

decide

> which therapy is correct you all disagree. Whose child is recovered

> here? Who wants to decide which is the right therapy and GUARANTEE

me

> you are right! So much makes sense and yet so little does! You say

MB12

> Japan studies say COQ10 is much better. Some say vitamin D,

Marshall

> Protocol says that is what harmful. Valtrex or natural antivirals?

Is

> it HHV-6 or Lyme or Parvo B19? Is it liver problems? If my child

is

> infected with a virus what really works? Oxalates??? SCD???

> Probiotics?? Glutathione?? Some say great ! some literature burns

brain

> cells HBOT????? Miracle or free radicals and oxidative stress Epson

> salt baths? I thought sulfur was a big no no in autoimmunity

issues!

> YEAST!!!!!WHO AND WHAT ARE RIGHT I could keep going I've never seen

so

> many alternatives.

> Finally do most of you sell something connected to Autism I never

got

> so any emails to buy or rent stuff? I do not mean to offend

anyone!!!!

> I need to help my son

>

>

[Guest guest]

It may help you to read some Recovery Stories. They can be

found at the Generation Rescue site. www.generationrescue.org. Also

McCarthy's new book, " Mother Warriors " has some recovery stories.

It is a follow up to her bestseller " Louder Than Words. "

Pamela

From: mb12 valtrex

[mailto:mb12 valtrex ] On Behalf Of ngoodhue

Sent: Monday, November 03, 2008 5:23 PM

To: mb12 valtrex

Subject: GUARANTEE me you are right!

First thank all of you for your encouraging

words and private emails.

Okay so I have been reading and it seems nobody agrees. How do I decide

which therapy is correct you all disagree. Whose child is recovered

here? Who wants to decide which is the right therapy and GUARANTEE me

you are right! So much makes sense and yet so little does! You say MB12

Japan studies say COQ10 is much better. Some say vitamin D, Marshall

Protocol says that is what harmful. Valtrex or natural antivirals? Is

it HHV-6 or Lyme or Parvo B19? Is it liver problems? If my child is

infected with a virus what really works? Oxalates??? SCD???

Probiotics?? Glutathione?? Some say great ! some literature burns brain

cells HBOT????? Miracle or free radicals and oxidative stress Epson

salt baths? I thought sulfur was a big no no in autoimmunity issues!

YEAST!!!!!WHO AND WHAT ARE RIGHT I could keep going I've never seen so

many alternatives.

Finally do most of you sell something connected to Autism I never got

so any emails to buy or rent stuff? I do not mean to offend anyone!!!!

I need to help my son

[Guest guest]

Hi,

Unfortunately, none of us is all right or all wrong, AND THERE ARE

NO, I REPEAT, NO GUARANTEES. What works for one child may not work

for another, AND NOTHING WORKS OVERNIGHT. We are all in this for the

long haul. The first thing that needs to be done is to find a

nutritionist or naturopath who uses the DAN! protocol. (They are less

expensive than a DAN! dr.) They will order tests to see what kind of

shape you childs gut is in. Do these tests, they are very important!!

The two best if you can't do all are the peptides test and the OAT

test. These tell you if there is a gluten and casein sensitivity.

(There usually is) Then you know to start gfcf. The OAT gives an

overall look at digestion, yeast, fungus, bacterial stuff and how well

the child is absorbing nutrients on the cellular level. Then you

start your biomedical program. You need to journal (if possible) each

step of the way so you can see progress, flare-ups and healing

regressions, because you will see all of these. Each day, week,

month, and year that passes you will see progress. Some days it seems

like you take 1 step forward and 2 back!! Some days you will see 2

steps forward and 1 step back. But overall, it will get better and

thru the process you will find out if diflucam or sacro B works better

for your child and if B12 will have the desired affect or if you need

to go another way. I repeat, each child is different and each symptom

responds differently. But each child will respond when you find what

works.

Those of us who have been on this journey for a while (me--2 years

now) have learned to be patient (no easy to do) and to be a detective.

Watch for any changes, read all you can, become informed, find a

professional you trust and tell them everything you notice no matter

how small it seems to you. The one thing that seems to be almost

universal with ASD kids is the gfcf diet. Our kids do not digest

gluten or casein properly and it makes them crazy, spacey, and slow.

So before anything else you need to become informed about the diet. A

great source for that info. is on the TACA website. www.tacanow.org

has a great overview of the diet, how and why it works, suggestions to

start and a wonderful list of recipes and links to products that are

gfcf. If your child is sensitive (like mine) you will also need to

find skin, hair and bath products that are gfcf free. (Aveeno has

gluten) we used it for 5 years until I read on line that. Aveeno

products have oatmeal that is not gluten free, don't use it. We

investigated and found they were correct. I say again, you must be a

detective, take nothing for granted, always second guess information

and find a professional you trust. Hope your journey becomes easier.

Mine has. I have seen great improvement in my guy. We are not there

yet, but he talks 100 miles an hour, has great eye contact, reads and

writes and spells way beyond his grade level and is improving in his

eating habits. We are working on social skills, but he is now having

fun with his younger brother (praise God for the improvement). So

please don't lose heart, there is hope, but it comes with hard work.

>

> First thank all of you for your encouraging words and private emails.

> Okay so I have been reading and it seems nobody agrees. How do I decide

> which therapy is correct you all disagree. Whose child is recovered

> here? Who wants to decide which is the right therapy and GUARANTEE me

> you are right! So much makes sense and yet so little does! You say MB12

> Japan studies say COQ10 is much better. Some say vitamin D, Marshall

> Protocol says that is what harmful. Valtrex or natural antivirals? Is

> it HHV-6 or Lyme or Parvo B19? Is it liver problems? If my child is

> infected with a virus what really works? Oxalates??? SCD???

> Probiotics?? Glutathione?? Some say great ! some literature burns brain

> cells HBOT????? Miracle or free radicals and oxidative stress Epson

> salt baths? I thought sulfur was a big no no in autoimmunity issues!

> YEAST!!!!!WHO AND WHAT ARE RIGHT I could keep going I've never seen so

> many alternatives.

> Finally do most of you sell something connected to Autism I never got

> so any emails to buy or rent stuff? I do not mean to offend anyone!!!!

> I need to help my son

>

>

[Guest guest]

I agree-nobody can guarantee their way will recover your child. I have two on the spectrum and my daughter is almost completelt recovered-others would say she is recovered-by diet alone. My son is a bigger puzzle. Diet helped but he still has a way to go. You just have keep going and celebrate every step forward.

Re: GUARANTEE me you are right!

Hi,Unfortunately, none of us is all right or all wrong, AND THERE ARENO, I REPEAT, NO GUARANTEES. What works for one child may not workfor another, AND NOTHING WORKS OVERNIGHT. We are all in this for thelong haul. The first thing that needs to be done is to find anutritionist or naturopath who uses the DAN! protocol. (They are lessexpensive than a DAN! dr.) They will order tests to see what kind ofshape you childs gut is in. Do these tests, they are very important!!The two best if you can't do all are the peptides test and the OATtest. These tell you if there is a gluten and casein sensitivity. (There usually is) Then you know to start gfcf. The OAT gives anoverall look at digestion, yeast, fungus, bacterial stuff and how wellthe child is absorbing nutrients on the cellular level. Then youstart your biomedical program. You need to journal (if possible) eachstep of the way so you can see progress, flare-ups and healingregressions, because you will see all of these. Each day, week,month, and year that passes you will see progress. Some days it seemslike you take 1 step forward and 2 back!! Some days you will see 2steps forward and 1 step back. But overall, it will get better andthru the process you will find out if diflucam or sacro B works betterfor your child and if B12 will have the desired affect or if you needto go another way. I repeat, each child is different and each symptomresponds differently. But each child will respond when you find whatworks. Those of us who have been on this journey for a while (me--2 yearsnow) have learned to be patient (no easy to do) and to be a detective.Watch for any changes, read all you can, become informed, find aprofessional you trust and tell them everything you notice no matterhow small it seems to you. The one thing that seems to be almostuniversal with ASD kids is the gfcf diet. Our kids do not digestgluten or casein properly and it makes them crazy, spacey, and slow. So before anything else you need to become informed about the diet. Agreat source for that info. is on the TACA website. www.tacanow.orghas a great overview of the diet, how and why it works, suggestions tostart and a wonderful list of recipes and links to products that aregfcf. If your child is sensitive (like mine) you will also need tofind skin, hair and bath products that are gfcf free. (Aveeno hasgluten) we used it for 5 years until I read on line that. Aveenoproducts have oatmeal that is not gluten free, don't use it. Weinvestigated and found they were correct. I say again, you must be adetective, take nothing for granted, always second guess informationand find a professional you trust. Hope your journey becomes easier.Mine has. I have seen great improvement in my guy. We are not thereyet, but he talks 100 miles an hour, has great eye contact, reads andwrites and spells way beyond his grade level and is improving in hiseating habits. We are working on social skills, but he is now havingfun with his younger brother (praise God for the improvement). Soplease don't lose heart, there is hope, but it comes with hard work.>> First thank all of you for your encouraging words and private emails. > Okay so I have been reading and it seems nobody agrees. How do I decide > which therapy is correct you all disagree. Whose child is recovered > here? Who wants to decide which is the right therapy and GUARANTEE me > you are right! So much makes sense and yet so little does! You say MB12 > Japan studies say COQ10 is much better. Some say vitamin D, Marshall > Protocol says that is what harmful. Valtrex or natural antivirals? Is > it HHV-6 or Lyme or Parvo B19? Is it liver problems? If my child is > infected with a virus what really works? Oxalates??? SCD??? > Probiotics?? Glutathione?? Some say great ! some literature burns brain > cells HBOT????? Miracle or free radicals and oxidative stress Epson > salt baths? I thought sulfur was a big no no in autoimmunity issues! > YEAST!!!!!WHO AND WHAT ARE RIGHT I could keep going I've never seen so > many alternatives. > Finally do most of you sell something connected to Autism I never got > so any emails to buy or rent stuff? I do not mean to offend anyone!!!! > I need to help my son> >

[Guest guest]

I am far from an expert, most if not all of the dedicated parents on this board know much more than i do so in that respect I can't offer you much help. I do however know the frustration you are feeling. My son is 3. After being very frustated waitin gfor a dev ped appt I accidentally stumbled across info on DAN and thus began our journey. When I joined this group I was so overwhelmed I couldn't eve understand 1/2 of what everyone was talking about, and forget about all of the abbreviations. BUT we found a DAN and started the diet. I wasn't sure if I believed it and after a few days I watched my child loose all energy and not want to do anything. Scared I e-mailed this board and they told me stick with it. 3 days later my son was responding to his name. We started supplementing and I have to say I

haven't seen a huge difference with that but I continue to supplement b/c at the very least I know that the supplements are nutritionally helping my child. Now I want to start MB12. My point is just try to relax and take it step by step. Find a Dr. who can help you, at least in the beginning that can help you make the decision with where to start. We haven't recovered our son yet but he has improved. In July he was put into an autistic support classroom, last week his teacher contacted me and suggested we have an IEP meeting b/c she felt as though Tyler was ready to move to the developmental delay classroom. The school removed his diagnosis of autism. I guess in all of my rambling what I am trying to say is I was confused, I stil am. I was angry that my child has autism. But I got help and found a starting point. The rest I just take day to day. I research as much as possible and try to

make the best decisions for my son. YOU CAN DO THIS. I do want to say though that I am not the most active person on this board but I do read allof the time and I haven't read or heard of anyone on this board who seemed to be soliciting. I hope this has helped, I know how you feel, and I wish you all the best.

Suzanne

Subject: Re: GUARANTEE me you are right!To: mb12 valtrex Date: Monday, November 3, 2008, 11:55 PM

I agree. Every child is different. My kiddo doesn't react the same way as any of my friends kiddos do to different interventions. Nor does my kiddo have all the same issues that theirs do. It's not hit and miss, but finding out what works for others is a great starting place. After doubting the diet, I must say that now I'm a strong supporter of it. GF/CF is working so well for my kiddo now (after about 6 weeks of it not working so well). I wish I had an answer about a magic puzzle piece, but I don't even have one for my kiddo yet, and there's probably more than one piece missing. Start testing to give you a baseline and directions where to go. If you go to www.autism.com you can listen to some of the previous Defeat Autism Now! conference speakers. I do not sell or rent

anything. I am just a mom trying to heal her kid.

IHTH

(by the way, I didn't get any solicitations after joining this group)

[Guest guest]

Suzanne,

I am new to the group as well. I read everything that comes through, though and I wanted to congratulate you on losing the Autism diagnosis and moving up to developmental delay. I wanted to give you a heads up, however, concerning the IEP. My son is also 3 and just started in the special ed preschool a few weeks ago. I had an advocate go with me to our meeting. The school system suggested that my son receive services under the umbrella of "developmental delay" instead of Autism. My advocate pointed out that the developmental delay umbrella does not provide protection for Behavior. To be able to have accommodations and a Behavior Plan protected and built into the IEP, you are better off going with Autism on the IEP. He should still be able to move up to the other classroom. This is how it is in Montana anyway. Your state may be different, but definitely something to think about. Good luck and congratulations.

To: mb12 valtrex From: carrolls26@...Date: Tue, 4 Nov 2008 10:24:10 -0800Subject: Re: Re: GUARANTEE me you are right!

I am far from an expert, most if not all of the dedicated parents on this board know much more than i do so in that respect I can't offer you much help. I do however know the frustration you are feeling. My son is 3. After being very frustated waitin gfor a dev ped appt I accidentally stumbled across info on DAN and thus began our journey. When I joined this group I was so overwhelmed I couldn't eve understand 1/2 of what everyone was talking about, and forget about all of the abbreviations. BUT we found a DAN and started the diet. I wasn't sure if I believed it and after a few days I watched my child loose all energy and not want to do anything. Scared I e-mailed this board and they told me stick with it. 3 days later my son was responding to his name. We started supplementing and I have to say I haven't seen a huge difference with that but I continue to supplement b/c at the very least I know that the supplements are nutritionally helping my child. Now I want to start MB12. My point is just try to relax and take it step by step. Find a Dr. who can help you, at least in the beginning that can help you make the decision with where to start. We haven't recovered our son yet but he has improved. In July he was put into an autistic support classroom, last week his teacher contacted me and suggested we have an IEP meeting b/c she felt as though Tyler was ready to move to the developmental delay classroom. The school removed his diagnosis of autism. I guess in all of my rambling what I am trying to say is I was confused, I stil am. I was angry that my child has autism. But I got help and found a starting point. The rest I just take day to day. I research as much as possible and try to make the best decisions for my son. YOU CAN DO THIS. I do want to say though that I am not the most active person on this board but I do read allof the time and I haven't read or heard of anyone on this board who seemed to be soliciting. I hope this has helped, I know how you feel, and I wish you all the best.

Suzanne

From: <connors-mommiesbcglobal (DOT) net>Subject: Re: GUARANTEE me you are right!To: mb12 valtrex Date: Monday, November 3, 2008, 11:55 PM

I agree. Every child is different. My kiddo doesn't react the same way as any of my friends kiddos do to different interventions. Nor does my kiddo have all the same issues that theirs do. It's not hit and miss, but finding out what works for others is a great starting place. After doubting the diet, I must say that now I'm a strong supporter of it. GF/CF is working so well for my kiddo now (after about 6 weeks of it not working so well). I wish I had an answer about a magic puzzle piece, but I don't even have one for my kiddo yet, and there's probably more than one piece missing. Start testing to give you a baseline and directions where to go. If you go to www.autism.com you can listen to some of the previous Defeat Autism Now! conference speakers. I do not sell or rent anything. I am just a mom trying to heal her kid.

IHTH

(by the way, I didn't get any solicitations after joining this group) Store, manage and share up to 5GB with Windows Live SkyDrive. Start uploading now