Re: Secretin

[Guest guest]

Has anyone tried secretin. If so, what were the results? Sheila

_________________________________________________________________

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[Guest guest]

We did. I saw little enough at the time that I wasn't sure if it was the

secretin or not. No lasting effects on behavior, skills, language, etc. About

2 years later we went off the gf/cf diet because J was getting so thin. He

didn't have the degree of problems he did with g/c before the diet. I think

maybe the secretin helped heal his gut a litttle. He is doing very well on the

enzymes now. Increase and improvements in everything. Language, communication,

sleep, more " there " with us.

JJ

[Guest guest]

> I only wish that the " really cheap " enzymes (yes we use them) did

even a tenth of what the really expensive secretin did for my

child !

As always, different things work for different children.

I will heartily defend your right to have that option available

whether it works for my family or not, or even if it only works for

every 2 out of every 100 people.

I am glad some actual parents posted their experiences. Now we have a

price range of $45 (reasonable) to $1000 (not what I call

reasonable). That is a HUGE difference. That is the more aggravating

part of the secretin issue. If secretin was reasonably price that may

very well improve the success rate overall too as more people could

get more regular inputs. Who knows?! Also, the digestion issue is one

mode of action, but since no one really knows how secretin is making

all these improvements, it could be accomplishing other things as

well.

.

[Guest guest]

, While I have written many letters in an attempt to explain

the effects of secretin, it was that one post that I had sent

to the S-J that got the most attention. It is difficult to

explain in simple language how digestion works, and just how

secretin fits into this, but this letter seemed to get the

point across, more than the technical journal summaries that

I had been sending. The colon becomes impacted because it is

waiting on the flush of bicarbonate. The enzymes I feel are

still needed even if the child doesn't need a bicarbonate,

and if they do, the bicarbonate helps the enzymes work

even better. Here is the copy of what I sent on secretin

to the S-J list. See below. Best, Carlton

Don't we all become wiser! I cannot say that secretin

didn't help, because it did. It took me two years to figure out

that all it did was to aid in the release one of many pancreatic

peptides that was needed for digestion. I found the solution to

that from 'plain old sodium bicarbonate'. Nobody that I can remember

ran out to get an infusion based on what I had said about secretin

nine months prior to the show , it was Dateline that got everyone

excited. If you don't see it on TV, then it must not work.

I have tried very hard to explain how secretin works, and I

will give it another try. You have to understand some basic

rules of digestion, and this site is so nice, it is so easy

to understand. Here is a clipping of part of the article

'Gastrin, secretin, and cholecystokinin are hormones that regulate

stages of digestion. Protein in the stomach stimulates secretion of

gastrin, which causes increased stomach acid secretion and

mobility of the digestive tract to move food. Food passing into the

duodenum causes the production of secretin, which in turn promotes

release of alkaline secretions from the pancreas, stops further passage

of food into the intestine until the acid is neutralized.

Cholecystokinin (CCK) is released from intestinal epithelium in response

to fats, and causes the release of bile from the gall bladder and lipase

(a fat digesting enzyme) from the pancreas.

Specifically take note of this one sentence 'Food passing into the

duodenum causes the production of secretin, which in turn promotes

release of alkaline secretions from the pancreas, stops further passage

of food into the intestine until the acid is neutralized.'

Secretin promotes the release of alkaline secretions, this is

what I have been trying so hard to tell all of you, that they

were too acid, there were not switching over to a more alkaline

state, unless you gave secretin at that particular time in

the digestive process, the child was not going to get a response,

and why BOTHER, when you can get the same effect by giving them

a BICARBONATE after a meal, not before, you will destroy the

stomach acid that they need to begin the digestion of food

in the stomach, what you want to do is give them that bicarbonate

when the food gets to the duodenum.

There is a lot of other good information in this article, and

it is not hard to understand. Best, Forrest's Mom

http://gened.emc.maricopa.edu/bio/bio181/BIOBK/BioBookDIGEST.html

[Guest guest]

Thanks , you make so much sense and put this in easy to understand

language

Cheers H

Re: [ ] Re: secretin

> , While I have written many letters in an attempt to explain

> the effects of secretin, it was that one post that I had sent

> to the S-J that got the most attention. It is difficult to

> explain in simple language how digestion works, and just how

> secretin fits into this, but this letter seemed to get the

> point across, more than the technical journal summaries that

> I had been sending. The colon becomes impacted because it is

> waiting on the flush of bicarbonate. The enzymes I feel are

> still needed even if the child doesn't need a bicarbonate,

> and if they do, the bicarbonate helps the enzymes work

> even better. Here is the copy of what I sent on secretin

> to the S-J list. See below. Best, Carlton

> Don't we all become wiser! I cannot say that secretin

> didn't help, because it did. It took me two years to figure out

> that all it did was to aid in the release one of many pancreatic

> peptides that was needed for digestion. I found the solution to

> that from 'plain old sodium bicarbonate'. Nobody that I can remember

> ran out to get an infusion based on what I had said about secretin

> nine months prior to the show , it was Dateline that got everyone

> excited. If you don't see it on TV, then it must not work.

> I have tried very hard to explain how secretin works, and I

> will give it another try. You have to understand some basic

> rules of digestion, and this site is so nice, it is so easy

> to understand. Here is a clipping of part of the article

> 'Gastrin, secretin, and cholecystokinin are hormones that regulate

> stages of digestion. Protein in the stomach stimulates secretion of

> gastrin, which causes increased stomach acid secretion and

> mobility of the digestive tract to move food. Food passing into the

> duodenum causes the production of secretin, which in turn promotes

> release of alkaline secretions from the pancreas, stops further passage

> of food into the intestine until the acid is neutralized.

> Cholecystokinin (CCK) is released from intestinal epithelium in response

> to fats, and causes the release of bile from the gall bladder and lipase

> (a fat digesting enzyme) from the pancreas.

>

> Specifically take note of this one sentence 'Food passing into the

> duodenum causes the production of secretin, which in turn promotes

> release of alkaline secretions from the pancreas, stops further passage

> of food into the intestine until the acid is neutralized.'

>

> Secretin promotes the release of alkaline secretions, this is

> what I have been trying so hard to tell all of you, that they

> were too acid, there were not switching over to a more alkaline

> state, unless you gave secretin at that particular time in

> the digestive process, the child was not going to get a response,

> and why BOTHER, when you can get the same effect by giving them

> a BICARBONATE after a meal, not before, you will destroy the

> stomach acid that they need to begin the digestion of food

> in the stomach, what you want to do is give them that bicarbonate

> when the food gets to the duodenum.

> There is a lot of other good information in this article, and

> it is not hard to understand. Best, Forrest's Mom

>

> http://gened.emc.maricopa.edu/bio/bio181/BIOBK/BioBookDIGEST.html

>

>

>

[Guest guest]

Thank you , that was very sweet to say, but I cannot take

the credit, Dr.Kane explained this to me one day about how

bicarbonates work, but then I never could explain it where

it made sense to anyone else. That is when I found this site,

and it really has the digestive written up where it is so simple

to understand, btw here is another clipping from that

same article:

'The upper part, the duodenum, is the most active in

digestion. Secretions from the liver and pancreas are used for digestion

in the duodenum. Epithelial cells of the duodenum secrete a watery

mucus. The pancreas secretes digestive enzymes and stomach

acid-neutralizing bicarbonate.'

This article put a lot of pieces together, and then I could

better understand what was happened to my son.

Best, Carlton

[Guest guest]

> less for the stealth test. Shucks, I didn't know that people could

get

> Secretin so cheaply nowadays. For $45, I'd recommend EVERYONE try

> it!

I know someone whose son had a major severe negative reaction to

Secretin, so I would recommend that parents NOT try it, unless they

have researched it for themselves and they believe it might be

beneficial.

Just like everything, it works for some, does nothing for others, and

can be a major negative for others.

Dana

[Guest guest]

> Has anyone tried secretin. If so, what were the results? Sheila

>://explorer.msn.com/intl.asp.

We had major sensory issues. Trying to rip clothes and skin off.

When we put her in the pool, you would have thought we were dipping

her in acid - We had been doing 1 vial (Zurich brand not Ferring),

every six weeks. Then Dr decided to do two - which I agreed to as

other parents had. That was when it all fell apart. I know of

others who are still giving it though, 2 years on. A friends child

reacted the same as ours so we were an isolated case.

[Guest guest]

In a message dated 14/07/2002 04:41:09 GMT Daylight Time, gmoon@...

writes:

> I noticed in this month's Sydney's Child an ad from a Qld-based medical

> practice offering " complete medical treatment for autism spectrum disorder

> (based on Secretin). " Their product is called Secrenase and their web site

> is www.elstreemedical.com This is just for information. I don't know

> anything about them or their product/treatment.

> Gillian.

>

Hi Gillian

I'm interested too. We are in UK and I heard back in 2000, talking to

parents at a confernce, I learned that this chap Dr Pugh was flying around

the country giving Secrelux (totally synthetic secretin) injections to all

sorts of kids - the parents I spoke to were all having good results, 2 with

spontaneous speech after infusion. Although we are very close to a regional

airport he didn;t have enough people in our area to visit. He was charging at

that time about 15% of the price a couple of London based Dr's were charging

and helping people out with prescriptions for Bethencol for those wanting to

try Megsons protocol. All in all, a good chap.

Now the Secrenase interested me but I've contacted one of the parents who was

doing the Secrelux injections but she didn't know anybody using it here in

UK. I guessed they were selling more in Oz. I was planning to send him an

email, I know they sent info sheets when I was looking at the Secrelux. Sorry

this doesn't help you much

Mandi in UK

[Guest guest]

Yep, our DAN doctor does them, and most of the DAN doctors I know of do as

well.

" Hooker, S " wrote:

> All

> Does anyone know if you can get secretin injections through a DAN! doc?

> Repligen is sponsoring a clinical trial for Secretin in our area, but it

> would require 8 hours round trip travel for each injection and check up.

> Thanks in advance!

>

>

> S. Hooker, Ph.D., P.E.

> Director of Product Development

> AltaGen Bioscience

> 902 Battelle Blvd., MSIN K2-10

> Richland, WA 99352

> Ph: 509-375-4420

> Fx: 509-372-4660

> Email: bhooker@...

>

>

> =======================================================

>

[Guest guest]

,

there has been discussion on this board of using bicarbonate of soda instead of

secretin.

[ ] secretin

All

I'm trying to assist my DAN! doc in finding a good version of Secretin

available in the US. I would prefer not to use Secrepan due to some of the

problems associated with a large volume infusion. Could anyone direct me to

a viable source. Thanks much and God bless!

S. Hooker, Ph.D., P.E.

Director of Product Development

AltaGen Bioscience

902 Battelle Blvd., MSIN K2-10

Richland, WA 99352

Ph: 509-375-4420

Fx: 509-372-4660

Email: bhooker@...

[Guest guest]

I haven't tried it yet, but found a web site with an explanation here:

http://osiris.sunderland.ac.uk/autism/sec.htm

There are many articles on the net. Just check out www.google.com and

put in secretin.

Laurie

> I'm sure you guys have discussed this before but I haven't come

> across it yet and I looked through the faq. What is the purpose of

an

> autistic child getting secretin IVs? Does this have anything to do

> with mercury toxicity? Does this have any actual benefits?

> Sorry if this is old news, I ran into a lady at a store who

mentioned

> she took her autistic child for these IVs and I was wondering what

> they were. Thanks!

>

[Guest guest]

> > I'm sure you guys have discussed this before but I haven't come

> > across it yet and I looked through the faq. What is the purpose of

> an

> > autistic child getting secretin IVs?

Improved behavior, improved digestion and bowel function.

> > Does this have anything to do

> > with mercury toxicity?

Not directly.

> > Does this have any actual benefits?

For some. Not others. The most useful rumors I have heard are that

the indications are right handed boys with excellent visuospatial

capabilities improve greatly but may experience substantial

hyperactivity. It doesn't do much for anyone else.

> > Sorry if this is old news, I ran into a lady at a store who

> mentioned

> > she took her autistic child for these IVs

It is also sometimes done transdermally, which also works. Sometimes

better than the shot.

>and I was wondering what

> > they were. Thanks!

> > Meliss

[Guest guest]

Hi , My son has just turned 5, we had done vit/mineral

supplements since jan 03 and started chelation in 3/03 both with good

improvements (improved focus, fine motor ability, expressive speech)

we had the usual yeast set backs and getting the dose of ALA right

(too high initially with side effects), then we tried transdermal

secretin starting about one month ago, this was recommended by Dr

Hift in NYC, it involves giving 3-6 unit with a skin

preparation called DMSO (this carries the secretin to the blood and

to the CNS)everyother to every third day (because of some

hyperactivity the dosing is an art rather than a science. Dr Hift

said most kids will have a GI improvement...more regular better

formed stools, she said that most kids will also have better behavior

and speech, but in a subgroup of right-handed boys with excellent

memory and visual learning she has seen dramatic responses in

auditory processing ability. My son fit this description and we have

seen close to a dramatic response. Of course we are also at round 12

of ALA, right when alot of people start seeing the really good

chelation responses and 6 months into vit/minerals also when the

really good response are seen. But I have to say I think the secretin

really has helped. Most people will see a GI response within 24-48

hours and a behavior reponse within 4-5 days, the higher functioning

the child at the start of treatment the more likely you will see the

auditory processing gains because the child will be doing things that

a third party can gauge an change with, I am told a speech therapist

working with the kids will be the first to comment on a change. The

good news is that there are few side effects other than hyperactivity

as you are figuring out the dose and the cost of DMSO and transdermal

secretin is in the 100 dollar a month range, you will want the human

secretin not the porcine..hope this helps gordon

> I'm sure you guys have discussed this before but I haven't come

> across it yet and I looked through the faq. What is the purpose of

an

> autistic child getting secretin IVs? Does this have anything to do

> with mercury toxicity? Does this have any actual benefits?

> Sorry if this is old news, I ran into a lady at a store who

mentioned

> she took her autistic child for these IVs and I was wondering what

> they were. Thanks!

>

[Guest guest]

Thanks so much, Gordon! This helps a lot!

[ ] Re: secretin

> Hi , My son has just turned 5, we had done vit/mineral

> supplements since jan 03 and started chelation in 3/03 both with good

> improvements (improved focus, fine motor ability, expressive speech)

> we had the usual yeast set backs and getting the dose of ALA right

> (too high initially with side effects), then we tried transdermal

> secretin starting about one month ago, this was recommended by Dr

> Hift in NYC, it involves giving 3-6 unit with a skin

> preparation called DMSO (this carries the secretin to the blood and

> to the CNS)everyother to every third day (because of some

> hyperactivity the dosing is an art rather than a science. Dr Hift

> said most kids will have a GI improvement...more regular better

> formed stools, she said that most kids will also have better behavior

> and speech, but in a subgroup of right-handed boys with excellent

> memory and visual learning she has seen dramatic responses in

> auditory processing ability. My son fit this description and we have

> seen close to a dramatic response. Of course we are also at round 12

> of ALA, right when alot of people start seeing the really good

> chelation responses and 6 months into vit/minerals also when the

> really good response are seen. But I have to say I think the secretin

> really has helped. Most people will see a GI response within 24-48

> hours and a behavior reponse within 4-5 days, the higher functioning

> the child at the start of treatment the more likely you will see the

> auditory processing gains because the child will be doing things that

> a third party can gauge an change with, I am told a speech therapist

> working with the kids will be the first to comment on a change. The

> good news is that there are few side effects other than hyperactivity

> as you are figuring out the dose and the cost of DMSO and transdermal

> secretin is in the 100 dollar a month range, you will want the human

> secretin not the porcine..hope this helps gordon

> > I'm sure you guys have discussed this before but I haven't come

> > across it yet and I looked through the faq. What is the purpose of

> an

> > autistic child getting secretin IVs? Does this have anything to do

> > with mercury toxicity? Does this have any actual benefits?

> > Sorry if this is old news, I ran into a lady at a store who

> mentioned

> > she took her autistic child for these IVs and I was wondering what

> > they were. Thanks!

> >

>

>

>

> =======================================================

>

[Guest guest]

Are you talking about the Repligen clinical trial?

I did not do this, but I use secretin transdermally for my son.

Let me know if you want more details.

Secretin

> We are going to do a secretin trial in about 2 weeks and want to know what

to

> expect.

> Has anyone tried this? What were the results?

> What should we watch out for?

> Thanks for your help.

>

> Mel

>

>

>

>

>

[Guest guest]

I tried it with my 3-yrs daughter 8-weeks ago. They said to watch for

raccoon eyes that some children get, but my daughter did not get that

effect. It goes away, and my DAN said that the ones that get that are

usually the ones that see improvement. That makes sense, because it

is probably a die-off reaction. I really did not see any changes with

it, and I waited the 5-weeks that they say it can take. I know some

parents that saw good results, so I hope ot works for you. It seems

to be a hit and miss deal, just like most other things. Why are you

doing the Secretin? I tried it because my daughter has high vaccine

titers, and it has lowerd those in some kids. We are having good

succes with monolarin for the titers. Make sure you really observe

your child for results, because it cost us $400 for the infusion and

secretin. Good luck!!--Tod

> We are going to do a secretin trial in about 2 weeks and want to

know what to

> expect.

> Has anyone tried this? What were the results?

> What should we watch out for?

> Thanks for your help.

>

> Mel

[Guest guest]

We are goping to give secretin a try because we just can't make any headways

with the yeast. The thought is that It may help, along with using Candex, No

Yeast and GSE. After the secretin has hopefully raised the liver enzymes we

will try Diflucan.

Mel

In a message dated 12/4/03 2:01:47 PM,

writes:

> Date: Thu, 04 Dec 2003 15:30:48 -0000

>    From: " tod_s_2000 " <tod_s_2000@...>

> Subject: Re: Secretin

>

> I tried it with my 3-yrs daughter 8-weeks ago. They said to watch for

> raccoon eyes that some children get, but my daughter did not get that

> effect. It goes away, and my DAN said that the ones that get that are

> usually the ones that see improvement. That makes sense, because it

> is probably a die-off reaction. I really did not see any changes with

> it, and I waited the 5-weeks that they say it can take. I know some

> parents that saw good results, so I hope ot works for you. It seems

> to be a hit and miss deal, just like most other things. Why are you

> doing the Secretin? I tried it because my daughter has high vaccine

> titers, and it has lowerd those in some kids. We are having good

> succes with monolarin for the titers. Make sure you really observe

> your child for results, because it cost us $400 for the infusion and

> secretin. Good luck!!--Tod

>

[Guest guest]

Mel,

I am curious, why would you want to use Diflucan after using the other yeast

products? It is my understanding that any of the pharmaceuticals are effective

for only short term and often times, the yeast problems comes back worse

after the drugs.

Robin

[Guest guest]

I used Diflucan for my daughter, and it worked great for her yeast. I

have given Culturelle ever since, 2-pills per day, and we have had no

yeast for 8-months.

> We are goping to give secretin a try because we just can't make any

headways

> with the yeast. The thought is that It may help, along with using

Candex, No

> Yeast and GSE. After the secretin has hopefully raised the liver

enzymes we

> will try Diflucan.

>

> Mel

>

>

> In a message dated 12/4/03 2:01:47 PM,

> writes:

>

>

> > Date: Thu, 04 Dec 2003 15:30:48 -0000

> >    From: " tod_s_2000 " <tod_s_2000@y...>

> > Subject: Re: Secretin

> >

> > I tried it with my 3-yrs daughter 8-weeks ago. They said to watch

for

> > raccoon eyes that some children get, but my daughter did not get

that

> > effect. It goes away, and my DAN said that the ones that get that

are

> > usually the ones that see improvement. That makes sense, because

it

> > is probably a die-off reaction. I really did not see any changes

with

> > it, and I waited the 5-weeks that they say it can take. I know

some

> > parents that saw good results, so I hope ot works for you. It

seems

> > to be a hit and miss deal, just like most other things. Why are

you

> > doing the Secretin? I tried it because my daughter has high

vaccine

> > titers, and it has lowerd those in some kids. We are having good

> > succes with monolarin for the titers. Make sure you really observe

> > your child for results, because it cost us $400 for the infusion

and

> > secretin. Good luck!!--Tod

> >

>

>

>

>

[Guest guest]

no fenol appears to have some of the benefits of secretin esp

enhancing tyrosine so you might like to give that a try.

www.houstonni.com

> Looking for general info about secretin. in what areas does it

supposedly

> help? Is the synthetic secretin as good as non synthetic. any

opinions are

> welcome.

>

kelly

>

>

>

[Guest guest]

about a year / year and a half ago, one of the head Drs from Univ of Md

spoke at our local ASA (Dr Elaine ??). The Secretin question was posed

to her.

She had doubts about its effectiveness - she said it did appear to help

the symptoms of those children with true 'gut issues'

She did say that out of the (7 ??) places that were given the grants to

conduct

the secretin study, only Dr Horvath at (Univ of MD?) was having any margin

of success.

doris

MD

[Guest guest]

We used transdermal as well as IV secretion about five years ago. No "break-through" or amazing results unfortunately.

Our child was part of the study done by ish Rite - they claimed that a small subgroup of these kids saw some changes, but there was not an across the board gain for all kids with autism.

I haven't heard much about secretin in the past few years though.

Lou

[Guest guest]

online data :

No offense but that's pretty simplistic. Are you aware of how much scientific clinical data exists showing secretin benefits SOME? Or the hugely different results between human secretin and animal secretin?

Credible data from brilliant people .

You know the day will come (unless we regress further) when autism will be identified in classes or subsets. There are already different subsets identified.

For instance only 5-10% exhibit with Kanner's Syndrome, or early infantile autism.

There are some *autists* who experience gastrointestinal disturbances particularly

after receiving a combination of vaccinations . Their immune system doesn't process in a predicatable 2+2 = 4 manner, but instead perhaps 2+2= 5 or 3, leaving them compromised. Some benefit dramatically from human secretin.

The *studies* the anti cure gangs are producing always make wonder why they want to dehomanize the

person so? Humans respond in different ways, we are not robots.

Processing and recovery capacities differ in every individual.

Medicine is a soft science, is it not?

-------------- Original message --------------

NEW YORK (Reuters Health) - Despite anecdotal evidence suggesting that secretin is a useful treatment for autism, the results of a new review do not support a therapeutic role for this gastrointestinal hormone.

The interest in secretin as an autism therapy began in 1998 when several small studies yielded encouraging results. "Since then, the use of secretin has become widespread and it is currently being dispensed in many different forms and in countries where it is not licensed," lead author Dr. Katrina , from the Children's Hospital in Westmeade, Australia, said in a statement.

As reported in the July 20th online issue of The Cochrane Library, ' team conducted a search of several online databases, including MEDLINE, to identify trials that compared secretin with placebo as a treatment for autism spectrum disorder in children or adults. Fourteen studies were included.

There was no evidence that secretin therapy improved the core features of autism, such as social difficulties, impaired speaking skills, and repetitive behaviors, the investigators note.

The results indicate that secretin should not be recommended as a treatment for autism, the authors emphasize.

Based on past experience, these findings may have little impact on the views of autism patients or their caregivers. In a 1999 study, 63 percent of parents surveyed still expressed an interest in secretin therapy even though it produced no significant improvements in their children.

"The many needs of these individuals trigger hope for a cure," noted. "As a result, therapies like secretin have become widely used after limited reports of success."

SOURCE: The Cochrane Library, July 20, 2005.

[Guest guest]

All very dubious about secretin. They tried to do a little study I remember

a while back but they powered it to see the huge gains anecdotally claimed

originally and not surprisingly they failed to materialise in the small

numbers looked at. I think that the Shattock website might have a

summary of the secretin saga. Its very difficult to get hold of and is an

iv preparation. The pancreatic enzymes are replaceable for those with an

insufficiency - for example in those with severe cystic fibrosis. I am not

sure that anyone has ever looked at that in ASDs - does anyone else know

anything about this? It would tie in with oral enzymes no doubt. I'll

search it when I get a moment.

Georgina in Adelaide