9 yr old nonverbal kid - too late to try?

[Guest guest]

We've been around the block with DAN. Everything failed. 6 years of nothing.

We quit 1 year ago. The doctor sounds interesting. But, I worry that it

is pointless for a nonverbal 9 year old. I have one of the most severe kids - -

tantrums, self-injury stuff. The trip would be really horrible from the East

Coast.

I need some hope to make the investment. My husband thinks that we are out of

hope.

[Guest guest]

Yes! Plan to go whether you drive or fly. We didn't see Dr. G until my son

was 10. He is not recovered, but is different from the kid with tantrums,

sick, and banging his head then. Everyone who works with him at school loves

him instead of him being the dreaded kid in the class. Our lives are so

different having a compliant, healthy, happy kid at 19. It doesn't happen

overnight, but it will happen vs DAN , been there, done that. There is a clinic

in Texas and Northern New York where Dr. Bruce sees patients, and Dr.

Goldberg is in Tarzana CA.

If you are on the east coast, your best bet might be a drive to see Dr.

. I hear he is great.

There is still hope. My husband can attest to it, finally...

Best,

Ellen

From: holliehobbieshoes@...

Date: Wed, 10 Nov 2010 00:31:37 +0000

Subject: 9 yr old nonverbal kid - too late to try ?

We've been around the block with DAN. Everything failed. 6 years of nothing. We

quit 1 year ago. The doctor sounds interesting. But, I worry that it is

pointless for a nonverbal 9 year old. I have one of the most severe kids - -

tantrums, self-injury stuff. The trip would be really horrible from the East

Coast.

I need some hope to make the investment. My husband thinks that we are out of

hope.

[Guest guest]

My heart goes out to you. Please don't give up! You don't have to

come all the way to California to see Dr. Goldberg. Dr. Bruce

is in TX, and he also goes to NY to the NY Clinic.

God bless you.

Argie

On Nov 9, 2010, at 4:31 PM, Just Another Mom wrote:

> We've been around the block with DAN. Everything failed. 6 years of

> nothing. We quit 1 year ago. The doctor sounds interesting.

> But, I worry that it is pointless for a nonverbal 9 year old. I have

> one of the most severe kids - - tantrums, self-injury stuff. The

> trip would be really horrible from the East Coast.

>

> I need some hope to make the investment. My husband thinks that we

> are out of hope.

>

>

>

[Guest guest]

>

> We've been around the block with DAN. Everything failed. 6 years of nothing.

We quit 1 year ago. The doctor sounds interesting. But, I worry that it

is pointless for a nonverbal 9 year old. I have one of the most severe kids - -

tantrums, self-injury stuff. The trip would be really horrible from the East

Coast.

>

> I need some hope to make the investment. My husband thinks that we are out of

hope.

>

Never give up hope. We started late too he was 9 also now 12. my grandson

has a lot of the same things going on too. There has been many ups & downs but

overall he is so much better now. I think with these older children it is

something that doesn`t happen overnite. Each child`s case is so different.

With our case it has not been a waste we lost several waisted yrs. while doing

DAN. Now we feel he is waking up for the first time. There are bad days

especially when we change meds. but we have lots more smiles we feel we are

gradually getting him back.

Hope this helps

Praying for our children

Carole(Grandmother)

[Guest guest]

Since you are on the East Coast you should go to who is at

Neubranders office in Edison New Jersey. Snce your child is severe and self

injurious he may have PANDAS.  can help you treat both PANDAS and

Autism.  He is on the PANDAS medical advisory board.

 

From: chocolatiluv <chocolatiluv@...>

Subject: Re: 9 yr old nonverbal kid - too late to try ?

Date: Wednesday, November 24, 2010, 12:50 AM

 

>

> We've been around the block with DAN. Everything failed. 6 years of nothing.

We quit 1 year ago. The doctor sounds interesting. But, I worry that it is

pointless for a nonverbal 9 year old. I have one of the most severe kids - -

tantrums, self-injury stuff. The trip would be really horrible from the East

Coast.

>

> I need some hope to make the investment. My husband thinks that we are out of

hope.

>

Never give up hope. We started late too he was 9 also now 12. my grandson

has a lot of the same things going on too. There has been many ups & downs but

overall he is so much better now. I think with these older children it is

something that doesn`t happen overnite. Each child`s case is so different.

With our case it has not been a waste we lost several waisted yrs. while doing

DAN. Now we feel he is waking up for the first time. There are bad days

especially when we change meds. but we have lots more smiles we feel we are

gradually getting him back.

Hope this helps

Praying for our children

Carole(Grandmother)

[Guest guest]

It is never too late to get these kids as high functioning as possible. In my

opinion, it is worth trying .  Good luck.    Lynn 

From: chocolatiluv <chocolatiluv@...>

Subject: Re: 9 yr old nonverbal kid - too late to try ?

Date: Wednesday, November 24, 2010, 12:50 AM

 

>

> We've been around the block with DAN. Everything failed. 6 years of nothing.

We quit 1 year ago. The doctor sounds interesting. But, I worry that it is

pointless for a nonverbal 9 year old. I have one of the most severe kids - -

tantrums, self-injury stuff. The trip would be really horrible from the East

Coast.

>

> I need some hope to make the investment. My husband thinks that we are out of

hope.

>

Never give up hope. We started late too he was 9 also now 12. my grandson

has a lot of the same things going on too. There has been many ups & downs but

overall he is so much better now. I think with these older children it is

something that doesn`t happen overnite. Each child`s case is so different.

With our case it has not been a waste we lost several waisted yrs. while doing

DAN. Now we feel he is waking up for the first time. There are bad days

especially when we change meds. but we have lots more smiles we feel we are

gradually getting him back.

Hope this helps

Praying for our children

Carole(Grandmother)

[Guest guest]

I have heard of at least one teen start talking from , and that wasn't from

Dr Goldberg.  I do not know his success rate.

There are several periods of rapid development ahead for your son where a lot of

improvements can still occur - including speech.  Puberty, late teens, early

twenties - don't ever give up.

Even if you never see speech but can improve functioning, and your child could

write, type, sign language, etc one day, that is a huge quality of life increase

right there.

It's never too late.  There is still so much ahead.  If the research on

XMRV/MLVs turns out to be significant in autism, then things will become

available for us (those w/CFS who've never gotten  well, and our kids with

autism who've never been well) that never came thru DAN!.  And there's

literature in AIDS research showing regressions in children, loss of speech and

language, etc, and much improvement after treatment.  Then there's research on

immune modulators and peptides that still haven't been visited either.

Don't give up hope, and do the best you can to help your child.

HTH

________________________________

From: Lynn Capone <ecapne@...>

Sent: Wed, November 24, 2010 8:00:17 AM

Subject: Re: Re: 9 yr old nonverbal kid - too late to try ?

 

It is never too late to get these kids as high functioning as possible. In my

opinion, it is worth trying .  Good luck.    Lynn 

From: chocolatiluv <chocolatiluv@...>

Subject: Re: 9 yr old nonverbal kid - too late to try ?

Date: Wednesday, November 24, 2010, 12:50 AM

 

>

> We've been around the block with DAN. Everything failed. 6 years of nothing.

We

>quit 1 year ago. The doctor sounds interesting. But, I worry that it is

>pointless for a nonverbal 9 year old. I have one of the most severe kids - -

>tantrums, self-injury stuff. The trip would be really horrible from the East

>Coast.

>

>

> I need some hope to make the investment. My husband thinks that we are out of

>hope.

>

Never give up hope. We started late too he was 9 also now 12. my grandson

has a lot of the same things going on too. There has been many ups & downs but

overall he is so much better now. I think with these older children it is

something that doesn`t happen overnite. Each child`s case is so different.

With our case it has not been a waste we lost several waisted yrs. while doing

DAN. Now we feel he is waking up for the first time. There are bad days

especially when we change meds. but we have lots more smiles we feel we are

gradually getting him back.

Hope this helps

Praying for our children

Carole(Grandmother)

[Guest guest]

What are the periods of rapid development for our kids My son is 6 still non

verbal I keep hoping for a natural development surge..