Re: Anyone tried Secretin?

[Guest guest]

I'd like to ask if anyone has tried Secretin on their child, what form did you

give it in, how many times did you give it, and what effects did you see?

Thanks.

For a Minority, Therapy Is Linked to Autism

Recovery

For a Minority, Therapy Is Linked to Autism Recovery

JEFF EVANS (Senior Writer)

Article Outline

. Copyright

BALTIMORE - Growing evidence suggests that a small minority of

children with autistic spectrum disorder can recover from the

condition to near-normal levels with only mild residual deficits,

Deborah Fein, Ph.D., said at a meeting on developmental disabilities

sponsored by s Hopkins University.

" We have no idea yet [whether recovery] is due to maturation of kids

who have a certain type of autism or treatment effects. There are

very few people who are looking at this, but there are a few groups

that are starting to look at it now, " said Dr. Fein, a professor of

psychology at the University of Connecticut, Storrs.

Early studies in the late 1960s and early 1970s included a small

minority of children who moved off the spectrum, but in most cases

the investigators did not point this out, which seems to imply that

those children were misdiagnosed. More recent studies have found

that early diagnoses are stable in most children with autistic

spectrum disorder (ASD), but there is a subgroup that moves off the

autistic spectrum. These children have been regarded as misdiagnosed

by some, but evidence from other studies suggests that these

children had unstable autism and " probably were not misdiagnosed, "

she said.

In one study, recovery from autism was reported in 9 of 19 children

who received 40 hours per week of applied behavior analysis (ABA)

therapy. These children successfully completed normal first grade in

a public school and had normal or above average IQ scores. They

gained an average of 30 IQ points more than their counterparts in a

control group of 40 children who had 10 hours per week of ABA; only

1 child in the control group recovered. Of the 10 other children in

the intense ABA therapy group, 8 remained in the mildly impaired

range, and 2 were profoundly retarded (J. Consult. Clin. Psychol.

1987;55:3-9).

In two attempts to replicate this study, there was substantial

improvement in ABA-treated autistic children in areas such as

cognition and academics but not in adaptive skills and behavior. Yet

ABA therapists in the two studies did not report recovery among any

of the children.

One recent study did replicate the results of the positive study

with ABA therapy. After 4 years of treatment with ABA, 11 of 23

children with autism were in regular classes and scored normally on

tests of IQ, language, adaptive functioning, and personality (Am. J.

Ment. Retard. 2005;110:417-38). Although 3 of the 11 children needed

classroom aides for attention problems and 1 would probably still

meet criteria for ASD, the other 7 would probably meet criteria for

an optimal outcome.

" This is a very exciting study, " Dr. Fein said.

In general, studies have found that communicative language by 5

years of age and a good response to early intervention within 3

months are positive signs for a good prognosis. Higher IQs appear to

be associated with better social, communicative, and adaptive

behaviors as the child ages.

In Dr. Fein's clinical impression, the children near 4-6 years of

age who make limited progress despite good intervention will be

those with mental retardation " across the board, " dense language

disorder, or an intense need for repetitive behavior despite the

appearance of normal cognitive potential at certain times. The

presence of seizures also may indicate a poor prognosis.

Children with ASD have been shown to leave the spectrum but then

reveal or develop another condition, such as ADHD. In a report, Dr.

Fein described 11 children with ASD who developed clear-cut cases of

ADHD by about 6 or 7 years of age. Eight of these children received

intensive applied behavior analysis therapy while the other three

participated in integrated or special education preschool. The

children retained some mild residual features of autism, such as

social awkwardness (but more impulsive and immature than aloof),

perseverative interests, and occasional mild motor stereotypies (J.

Autism Dev. Disord. 2005;35:525-34).

In those cases, the children may have had comorbid ASD and ADHD,

leaving ADHD when autism resolved. These children also could have

had a severe subtype of ADHD that presents as autism in the early

years, but this may not be the case because the children

looked " pretty indistinguishable from kids who stay autistic, " she

noted. Or it could be that attention impairment is a feature of ASD

that remains when social, behavioral, and communication impairments

subside.

In a separate ongoing study conducted by Dr. Fein and her

colleagues, a group of 77 children who screened positive on the

Modified Checklist for Autism in Toddlers at 2 years of age were

later seen at 4 years of age, regardless of whether they were

autistic or not. Of the 61 children who had autism at 2 years of

age, 46 also had it at 4 years of age. The remaining 15 children

moved off the autistic spectrum. A total of 16 children were not

autistic at either age but still screened positive because they had

some problems, such as global developmental and language delays. No

children who were nonautistic at 2 years of age became autistic at 4

years of age.

At 2 years of age, the 15 children in that study who left the

spectrum were indistinguishable on measures of communication,

socialization, symptom severity, and cognitive ability from children

who remained autistic. But at 4 years of age, the " recovered "

children reached almost normal levels on these measures, she said.

The only major difference between these groups at 2 years of age was

in motor skills, in which recovered children had significantly

higher scores that reached near-normal levels at 4 years of age.

In another study that will appear in the Journal of Autism and

Developmental Disorders, Dr. Fein and her associates reported on 14

children aged 5-9 years with prior ASD diagnoses. These children had

IQ scores in the normal range, were placed in age-appropriate

mainstream classes, and were considered to be generally functioning

at the level of their normally developing peers. They had normal

performance on many measures, including different aspects of

linguistic ability, expressive vocabulary, and sentence memory, and

had adaptive skills in communication and socialization.

But these children still had impairments in knowing the difference

between mental state verbs (know, guess, estimate) and in reasoning

about animate objects (not including people). They failed to produce

good narratives, judged by such factors as being less likely to

discuss major events and characters' motivations. They also were not

good at understanding " second order theory of mind " situations, such

as knowing " what does ny know that Suzie knows about what Rick

thinks, " Dr. Fein said.

But follow-up visits with these children at 9-12 years of age

indicated that the children were " closing the gap " between

themselves and normal children because their only remaining deficit

was with mental state verbs.

Misdiagnosis of children who leave the spectrum appears unlikely, so

the reasons why a small minority of autistic children can recover

may lie in the possibility that they have a form of autism that can

be alleviated with maturation or that their recovery was mediated by

successful treatment or some interaction between treatment and their

characteristics, she said.

These possibilities leave two big questions that remain to be

answered, Dr. Fein said: Are the children for whom recovery is

possible the ones with minimal structural brain abnormalities? When

recovered children do a task normally, are they using the same brain

systems as children who were never autistic?

Texas Autism Advocacy

www.TexasAutismAdvocacy.org

Texas Disability Network

Calendar of Events

www.TexasAutismAdvocacy.org

[Guest guest]

I don't care what the trials say - but secretin was the ONLY thing that I have

tried that has given my son " formed " and " regular " bowel movements. We got the

secretin straight from Repligen - and the year we did the injections - was the

best year " bowel formation speaking " of 's life.

Too bad I can't get it anymore - I don't trust the other stuff - the synthetic

- I've not tried.

We didn't see any language improvement - but boy did it work wonders for his

chronic diarrhea....

That - and the undenoic acid and probiotics have been the only help.....

Avoiding CFGF stuff has had benefits - but not like the secretin...

Guppy

" Dr. Graham-Garza " wrote:

I'd like to ask if anyone has tried Secretin on their child, what form did you

give it in, how many times did you give it, and what effects did you see?

Thanks.

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us who

are doing it!

Autism is BIG ~ but God is BIGGER

[Guest guest]

Hi ,

If has benefited in the past from Secretin in terms of his bowel

movement, what stops your regular doctor from ordering it for him? Is the

price a factor?

Re: Re: Anyone tried Secretin?

I don't care what the trials say - but secretin was the ONLY thing that I

have tried that has given my son " formed " and " regular " bowel movements.

We got the secretin straight from Repligen - and the year we did the

injections - was the best year " bowel formation speaking " of 's life.

Too bad I can't get it anymore - I don't trust the other stuff - the

synthetic - I've not tried.

We didn't see any language improvement - but boy did it work wonders for

his chronic diarrhea....

That - and the undenoic acid and probiotics have been the only help.....

Avoiding CFGF stuff has had benefits - but not like the secretin...

Guppy

" Dr. Graham-Garza " wrote:

I'd like to ask if anyone has tried Secretin on their child, what form did

you give it in, how many times did you give it, and what effects did you

see? Thanks.

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us

who are doing it!

Autism is BIG ~ but God is BIGGER

[Guest guest]

Hi ,

If has benefited in the past from Secretin in terms of his bowel

movement, what stops your regular doctor from ordering it for him? Is the

price a factor?

Re: Re: Anyone tried Secretin?

I don't care what the trials say - but secretin was the ONLY thing that I

have tried that has given my son " formed " and " regular " bowel movements.

We got the secretin straight from Repligen - and the year we did the

injections - was the best year " bowel formation speaking " of 's life.

Too bad I can't get it anymore - I don't trust the other stuff - the

synthetic - I've not tried.

We didn't see any language improvement - but boy did it work wonders for

his chronic diarrhea....

That - and the undenoic acid and probiotics have been the only help.....

Avoiding CFGF stuff has had benefits - but not like the secretin...

Guppy

" Dr. Graham-Garza " wrote:

I'd like to ask if anyone has tried Secretin on their child, what form did

you give it in, how many times did you give it, and what effects did you

see? Thanks.

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us

who are doing it!

Autism is BIG ~ but God is BIGGER

[Guest guest]

I didn't think they sold the " pure " secretin anymore..... Much less a

Pediatrician ordering it for me.

There is a place through Dr. Leichtman to order the synthetic secretin - but

that was like 200.00 a month....

I did try the transdermal with the synthetic - but did not see as good results

- plus the cost.

With the original secretin - we gave an injection once a month or so....

I do need to pursue that again - because it was the thing that made the

biggest difference... But then the cost, other issues crept in - and I did not

pursue it....

Is anyone else using any form of secretin on this list?

ginam wrote:

Hi ,

If has benefited in the past from Secretin in terms of his bowel

movement, what stops your regular doctor from ordering it for him? Is the

price a factor?

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us who

are doing it!

Autism is BIG ~ but God is BIGGER

[Guest guest]

I didn't think they sold the " pure " secretin anymore..... Much less a

Pediatrician ordering it for me.

There is a place through Dr. Leichtman to order the synthetic secretin - but

that was like 200.00 a month....

I did try the transdermal with the synthetic - but did not see as good results

- plus the cost.

With the original secretin - we gave an injection once a month or so....

I do need to pursue that again - because it was the thing that made the

biggest difference... But then the cost, other issues crept in - and I did not

pursue it....

Is anyone else using any form of secretin on this list?

ginam wrote:

Hi ,

If has benefited in the past from Secretin in terms of his bowel

movement, what stops your regular doctor from ordering it for him? Is the

price a factor?

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us who

are doing it!

Autism is BIG ~ but God is BIGGER

[Guest guest]

Where did you get the injections from and how can you tell if it's " the

synthetic stuff " ?

Re: Re: Anyone tried Secretin?

I don't care what the trials say - but secretin was the ONLY thing that I have

tried that has given my son " formed " and " regular " bowel movements. We got the

secretin straight from Repligen - and the year we did the injections - was the

best year " bowel formation speaking " of 's life.

Too bad I can't get it anymore - I don't trust the other stuff - the

synthetic - I've not tried.

We didn't see any language improvement - but boy did it work wonders for his

chronic diarrhea....

That - and the undenoic acid and probiotics have been the only help.....

Avoiding CFGF stuff has had benefits - but not like the secretin...

Guppy

" Dr. Graham-Garza " wrote:

I'd like to ask if anyone has tried Secretin on their child, what form did

you give it in, how many times did you give it, and what effects did you see?

Thanks.

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us who

are doing it!

Autism is BIG ~ but God is BIGGER

[Guest guest]

Where did you get the injections from and how can you tell if it's " the

synthetic stuff " ?

Re: Re: Anyone tried Secretin?

I don't care what the trials say - but secretin was the ONLY thing that I have

tried that has given my son " formed " and " regular " bowel movements. We got the

secretin straight from Repligen - and the year we did the injections - was the

best year " bowel formation speaking " of 's life.

Too bad I can't get it anymore - I don't trust the other stuff - the

synthetic - I've not tried.

We didn't see any language improvement - but boy did it work wonders for his

chronic diarrhea....

That - and the undenoic acid and probiotics have been the only help.....

Avoiding CFGF stuff has had benefits - but not like the secretin...

Guppy

" Dr. Graham-Garza " wrote:

I'd like to ask if anyone has tried Secretin on their child, what form did

you give it in, how many times did you give it, and what effects did you see?

Thanks.

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us who

are doing it!

Autism is BIG ~ but God is BIGGER

[Guest guest]

I'm not sure other than I received the vials directly from Repligen back when

they were doing the studies on secretin. was an " unofficial " control

subject! Or however you word that. I received the vials of secretin at a

reduced cost in return for collecting urine samples...

Anyway -- after that trial ended - I heard you could order the secretin

overseas - didn't really trust that -- and when I looked around the US for where

to get it - was told it was the synthetic version that was available...

I just didn't pursure it further.....mainly because of the cost. I do need

to.

I know that a Dr. Leichtman who is a geneticist makes that available for

parents to purchase. He comes to Houston about twice a year. I took to

see him - and he is who I would order the transdermal from if I can ever afford

to start that again. It was like 200.00 for a month's supply.....

I got the vials of secretin shipped on dry ice from Repligen - New York -- and

then a homeopathic doctor infused it into my son every 6 weeks or so.

Sincerely

Guppy

" Dr. Graham-Garza " wrote:

Where did you get the injections from and how can you tell if it's " the

synthetic stuff " ?

Re: Re: Anyone tried Secretin?

I don't care what the trials say - but secretin was the ONLY thing that I have

tried that has given my son " formed " and " regular " bowel movements. We got the

secretin straight from Repligen - and the year we did the injections - was the

best year " bowel formation speaking " of 's life.

Too bad I can't get it anymore - I don't trust the other stuff - the

synthetic - I've not tried.

We didn't see any language improvement - but boy did it work wonders for his

chronic diarrhea....

That - and the undenoic acid and probiotics have been the only help.....

Avoiding CFGF stuff has had benefits - but not like the secretin...

Guppy

" Dr. Graham-Garza " wrote:

I'd like to ask if anyone has tried Secretin on their child, what form did

you give it in, how many times did you give it, and what effects did you see?

Thanks.

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us who

are doing it!

Autism is BIG ~ but God is BIGGER

[Guest guest]

I'm not sure other than I received the vials directly from Repligen back when

they were doing the studies on secretin. was an " unofficial " control

subject! Or however you word that. I received the vials of secretin at a

reduced cost in return for collecting urine samples...

Anyway -- after that trial ended - I heard you could order the secretin

overseas - didn't really trust that -- and when I looked around the US for where

to get it - was told it was the synthetic version that was available...

I just didn't pursure it further.....mainly because of the cost. I do need

to.

I know that a Dr. Leichtman who is a geneticist makes that available for

parents to purchase. He comes to Houston about twice a year. I took to

see him - and he is who I would order the transdermal from if I can ever afford

to start that again. It was like 200.00 for a month's supply.....

I got the vials of secretin shipped on dry ice from Repligen - New York -- and

then a homeopathic doctor infused it into my son every 6 weeks or so.

Sincerely

Guppy

" Dr. Graham-Garza " wrote:

Where did you get the injections from and how can you tell if it's " the

synthetic stuff " ?

Re: Re: Anyone tried Secretin?

I don't care what the trials say - but secretin was the ONLY thing that I have

tried that has given my son " formed " and " regular " bowel movements. We got the

secretin straight from Repligen - and the year we did the injections - was the

best year " bowel formation speaking " of 's life.

Too bad I can't get it anymore - I don't trust the other stuff - the

synthetic - I've not tried.

We didn't see any language improvement - but boy did it work wonders for his

chronic diarrhea....

That - and the undenoic acid and probiotics have been the only help.....

Avoiding CFGF stuff has had benefits - but not like the secretin...

Guppy

" Dr. Graham-Garza " wrote:

I'd like to ask if anyone has tried Secretin on their child, what form did

you give it in, how many times did you give it, and what effects did you see?

Thanks.

M. Guppy

E-mail: MGuppy@...

Website: www.TexasAutismAdvocacy.org

Let those who say it can't be done, get out of the way of those of us who

are doing it!

Autism is BIG ~ but God is BIGGER