http://osiris.sunderland.ac.uk/autism/sec.htm
The Use of Secretin for the treatment of Autism
Disclaimer:
This website was created in
response to media attention over the use of secretin
as an intervention for autism. The
authors stress that any information contained on this
site does not at this time
constitute a recommendation for the use of secretin.
Dr Reichelt's Comments
| References | Clinicians Opinions
| Dateline Text |
Secretin Update (11 Jan
1999)
More on secretin
What
is Secretin ?
Secretin is a polypeptide hormone
involved in the regulation of gastric function. It is prepared from the
duodenal mucosa of pigs. Following administration by intravenous injection, it
causes an increase in the secretion of the pancreas of water and bicarbonate
into the duodenum. It is used alone or in conjunction with pancreozymin or
cholecystokinetic agents as a test for exocrine pancreatic function, and in the
diagnosis of biliary-tract disorders.
Comments from Paul Shattock,
Autism Research Unit.
Readers of the "Observer"
and/or "Mail" and listeners to Radio will be aware that there has
been interest in the potential use of a hormone "Secretin" for the
treatment of autism.
Perhaps a bit more background
information would be useful.
Secretin has been known for at
least 20 years and it has a variety of functions but not much in the way of
medical uses. One thing it has been used for is to test pancreatic function in
other words to see if the pancreas is functioning correctly. A small amount is
injected and the amount of "bicarbonate" which appears in the
bloodstream is measured a short time afterwards. The bicarbonate secretion is
required in order to neutralise the acid from the stomach and allow the enzymes
in the duodenum to function.
As well as secreting bicarbonate,
the pancreas secretes many other enzymes including lipases and especially
peptidases. These peptidases will break down the peptides which, according to
proponents of the opioid excess theories of autism, may be responsible for the
problems. One way to diminish the problems caused by these potentially harmful
peptides is the remove them from the diet. That is why people experiment with
gluten and casein free diets.
Since secretin will stimulate the
pancreas to produce these enzymes it could ameliorate the symptoms by this
mechanism. It could, also or alternatively, be acting in the brain itself or in
the intestinal wall (if it acts at all).
There are numerous anecdotal
reports (a hundred or so) of the benefits of this form of therapy from parents
whom I have met and others with whom I have "talked" on the net. I
have also discussed the effects with 5 physicians in the US all of whom are
enthusiastic about what they have seen.
Some caveats.
There have been no proper trials to
prove efficacy although there has been a brief report published by Karoly
Horvath.
The drug is not licenced for this
purpose so it would take a fairly daring physician top prescribe this
medication, in the UK, for this purpose and at this time.
The drug without side effects does
not exist. Secretin has not been used over periods of time so we don't know
what will happen when it is. With products as complex as this we should expect
them to occur. The benefits/advantages ratio will have to be taken into
account.
There are some children with whom
no effects are seen anyway.
This could be a significant contribution
or it could turn out to be yet another gross disappointment. We will have to
wait and see on this one.
Conclusion
There is no doubt that this is an
interesting development but we will have to see if it pans out. There is a
biomedical plausibility about the mechanism and results seem promising. Since
the material is not readily available and it is not licenced for this
particular use at the moment anyway, we have little alternative than to monitor
progress with interest and some cautious optimism.
Paul Shattock
Cautionary comments on the use of
secretin by Dr Kalle Reichelt, NORWAY
I must say I am deeply worried
because not even the most elementary animal tests with repeated injections has
been done.
The structure of human secretin is:
H-S-D-G-T-F-T-S-E-L-S-R-L-R-E-G-A-R-L-Q-R-L-L-Q-G-L-V
NH2
Porcine
H-S-D-G-T-F-T-S-E-L-S-R-L-R-D-S-A-R-L-Q-R-L-L-Q-G-L-V
NH2
The sequence E-G-A is replaced with
D-S-A which may or may not be enough to induce antibodies. If you therefore use
porcine secretin there should be tests for antibodies against secretin included
in the protocol. This is important, because antibodies would cross react with
human endogenous secretin (destroying endognous secretin effects and gradually
injected supply too).
I am not disputing the effects, but
want to be safe. There is a vast difference between removing something and
repeatedly injecting a compound not studied at all with repeated injections
over probably years. I would therefore not use this before some elementary studies
on repeated IV use have been done in animals. I would also make sure I only
used the human secretin before the possibility of inducing antibodies has been
excluded.The present preparation is only to be used once for diagnostic
purposes, no one anywhere knows what repeated injections will do. After all
this is more pharmacological than physiological use. Usually antibodies will
cross react, which would mean that the children thus treated would have less
effective hormone than before treatment. This disaster happened with insulin.
Even the exogenous hormone (secretin) would gradually loose its power and
anaphylactic reactions are to be expected.
Karoly Horvath, M.D., Ph.D.
Associate Professor of Pediatrics Pediatric Gastroenterology and Nutrition 22 S
Greene Street, N5W70, Box 140 Baltimore, Maryland 21201-1595
References
Improved Social and Language
Skills After Secretin Administration in Patients with Autistic Spectrums
Disorders
Karoly Horvath, MD, PhD, Gerry
Stefatos, DPhil, Kenneth N. Sokolski, MD, Renee Wachtel, MD, Laura Nabors, PhD,
and J. Tyson Tildon, PhD.
Autistic Behavior and Secretin.
Journal of the Association for Academic Minority Physicians. January, 1998.
Vol. 9, No.1. pp.9-15.
Abstract: We report three children
with autistic spectrum disoreder who underwent upper gastrointestinal endoscopy
and intravenous administration of secretin to stimulate pancreaticobiliary
secretion. All three had an increased pancreaticobiliary secretory response
when compared with nonautistic patients (7.5 to 10 mL/min versus 1 to 2
mL/min). Within 5 weeks of the secretin infusion, a significant amelioration of
the children's gastrointestinal symptoms was observed, as was a dramatic
improvement in their behavior, manifested by improved eye contact, alertness,
and expansion of expressive language. These clinical observations suggest an
association between gastrointestinal and brain function in patients with
autistic behavior.
Additional
References
Regulation of tyrosine
hydroxylase activity in rat PC12 cells by neuropeptides of the secretin family.
Roskoski R Jr, White L, Knowlton R,
Roskoski LM
Department of Biochemistry and
Molecular Biology, Louisiana State University Medical Center, New Orleans.
Tyrosine hydroxylase, the
rate-limiting enzyme in catecholamine biosynthesis, is subject to regulation by
the cAMP as well as the calcium and cGMP second messenger systems. Treatment of
intact rat PC12 cells with neuropeptides including secretin and vasoactive
intestinal polypeptide (VIP) stimulated tyrosine hydroxylase activity 2 to
3-fold in vitro. Secretin (EC50 = 10 nM) was about 3 orders of magnitude more
potent than VIP (EC50 = 3 microM). A combination of several protease inhibitors
failed to enhance the potency of either peptide. Other members of the secretin
family including glucagon and peptide histidine isoleucine (PHI) stimulated
tyrosine hydroxylase activity to a lesser extent. Somatostatin, which is not
homologous to secretin, was ineffective. The maximal response of tyrosine
hydroxylase activation to 1 microM secretin occurred within 6-15 sec. Secretin,
VIP, and forskolin also enhanced tyrosine hydroxylase activity
(3,4-dihydroxyphenylalanine production) in intact cells, as determined by high
performance liquid chromatography and electrochemical detection. Secretin, VIP,
PHI, and glucagon increased the levels of cAMP in PC12 cells more than 10-fold,
as determined by radioimmunoassay. We also demonstrated that cAMP is released
from the cells into the incubation medium following secretin treatment. Secretin
and VIP treatment also enhanced the activity of cAMP-dependent protein kinase
in a concentration-dependent fashion, as measured subsequently in vitro. Based
on the greater potency of secretin in comparison with VIP, PHI, and glucagon,
we suggest that the PC12 cells contain a secretin-preferring receptor that
increases cAMP levels and brings about an activation of tyrosine hydroxylase
activity through the stimulation of cAMP-dependent protein kinase.
Retardation of gastric emptying of
solid food by secretin
JH Kleibeuker, H Beekhuis, DA Piers
and OB Schaffalitzky de Muckadell Department of Gastroenterology, University
Hospital, Groningen, the Netherlands.
The effect of secretin at nearly
physiologic plasma concentrations on the gastric emptying rate of solid food
was studied in 12 healthy men. A 99mTc colloid-labeled pancake was used as the
test meal. The gastric emptying rate was measured during 1 h using a
dual-headed gamma-camera, and was expressed as the half-time of the emptying
curve. To prevent endogenous secretin release, 400 mg of cimetidine was given
before the meal. Subjects were studied under three conditions: (1) during
infusion of saline; (2) during continuous infusion of secretin, 6.6 pmol/kg.h;
and (3) during three intermittent 10-min periods of secretin infusion, 7.6
pmol/kg.h during each period. Both continuous and intermittent infusion of
secretin increased half-emptying time, by 133% and 55%, respectively. The
plasma secretin concentration in condition 1 was 0.8 pM; plateau concentration
in condition 2 was 9.8 pM; and integrated mean concentration in condition 3 was
4.8 pM. It is concluded that secretin at approximately physiologic plasma
concentrations retards gastric emptying of solid food in humans.
Cholecystokinin- and secretin-releasing
peptides in the intestine--a new regulatory interendocrine mechanism in the
gastrointestinal tract.
Herzig KH
Regul Pept 1998 Feb 2;73(2):89-94
Department of Internal Medicine,
Christian-Albrects-Universitat, Kiel, Germany. kherzig@1med.uni-kiel.de
Maintenance of homeostasis in the
upper small bowel is a vital process for the body and therefore highly
controlled. The enteric nervous system and the endocrine system are the
regulators in this process influencing each other. The endocrine system in the
gut consists of the classical hormones [cholecystokinin (CCK) secretin] to
evoke motility or secretion. They are under control of releasing factors which
are probably influenced by the enteric nervous system. Diazepam binding
inhibitor and luminal CCK-releasing factor are likely candidates for
CCK-releasing peptides in the negative feedback process in the absence of
pancreatic juice. Experimental evidence suggests a secretin-releasing peptide.
Further studies will be needed to determine the physiological role of each of
these peptides. Monitor peptide in the pancreatic juice seems to function as a
specific positive enhancement for CCK release. All these peptides are
inactivated by the proteolytic enzymes during the interdigestive period. The
discovery of additional releasing peptides and factors is very likely.
[Effectiveness of cimetidine,
pirenzepine and synthetic secretin on stimulated gastric acid secretion].
[Article in German]
Gastroenterol 1980
Jun;18(6):306-313
Londong W, Londong V, Prechtl R,
Schwanner A
Two possibilities of an inhibition
of gastric acid secretion are compared in regard to effectiveness and side
effects. Combined i.v. bolus injection of 0.3 mg/kg cimetidine caused almost
complete inhibition of peptone-stimulated acid secretion in normal volunteers
and duodenal ulcer patients-radomized and double blind investigated-to the same
extent as high dose secretin (3 CU/kg/h i.v. infusion) in normal volunteers.
Postprandial gastrin was unchanged by combined drug application, but was
suppressed by secretin. Temporary blurred vision, dry mouth, and signifiant
increase of serum prolactin were side effects of the drug combination, whereas
secretin caused dose-dependent diarrhoea, increaded diuresis and elecvation of
serum lipase, trypsin, and sodium. Inhibition of acid secretion by combination
of the antimuscarinic drug pirenzepine with the H2-receptor blocking substances
cimetidine was almost complete, i.e. more effective than the combination of
classic anticholinergics with H2-blockers tested so far. Inhibition of acid
secretion by secretin was dose-dependent; the dosage clinically applied so far
(10 CU/kg s.c. and 0.5 CU/kg/h i.v.) had the smallest effect. In spite of first
favourable results with secretin in bleeding mucosal lesions, the observed side
effects cast doubt on its broad clinical applicability. A controlled clinical
trial of the combination of cimetidine plus pirenzepine as prophylaxis of
bleeding from mucosal lesions in risk patients seems to be indicated.
More
articles | More
articles(2) | More
articles(3)
Some comments by
clinicans using secretin
"Two patients unexpectedly
received oral antibiotics the day after I.V. Secretin and had no observed
benefit from the Secretin. Later, second doses of Secretin were administered
with significant positive response. A third child received I.V. Secretin and
full relief of chronic diarrhea for 36 hours, but diarrhea re-occured with a
vengeance when the child was given generous amounts of a juice known to
precipitate diarrhea in the past as well as simultaneous first-time oral
Magnesium. These may suggest that the thresholds in the gut affected by
Secretin may be very sensitive and intertwined, and that we especially should consider
optimization of other controllable factors in the gut---strict dietary
avoidance of irritating foods and solute loads, administration of probiotics
and supporting nutrients, suppression of overgrowths--for best results with
Secretin".
"Most of you know that
Secretin is a hormone native to the human body which stimulates secretion of
bicarbonate from the pancreas. Secretin injections have been used for a long
time for diagnostic purposes (determining levels of pancreatic function) and is
incredibly safe. The secretin used today has a pork source and differs only
slightly from native human secretin. The results that I have experienced have
been overwhelmingly good, with 85 - 90% of patients responding positively.
Positive responses range from mild (which I have compared to a very good
response to yeast/dysbiosis treatment or to nutritional measures) to dramatic,
where the parents describe remarkable changes in a short period of time. I have
had 5-6 dramatic responses, about 20 mild responses, and the rest falling
somewhere in-between. There have been no negative responses and no untoward
side effects. Repeat doses seem to create a cumulative effect. Age does not
seem to be a factor in response. The patients that seem to respond the best are
the children characterized by gut problems, dysbiosis, yeast overgrowth, and
food allergies".
DATELINE Programme text (aired
Wednesday 7th Ocotber)
EVERYTHING had been going so well
for the Beck family. We had for a long time envisioned that moment when we have
a couple of little kids in the backseat of our car and take family trips and do
family things and everything had seemed to just fall in step with what we had
dreamed about,ö says Victoria Beck.
The younger of two kids, Parker Beck,
was a happy, healthy two-year-old. But not long after his second birthday,
those smiles inexplicably began to fade.
He wouldn't look at us. He would shift
his gaze, says Victoria Beck. He was irritable. He would throw his head back in
screams high-pitched screams.
It seemed Parker no longer heard his
paret's voices. He stopped talking, stopped sleeping though the night and began
oddly spinning. Although their pediatrician assured them Parker would get over
it, the Becks sensed it was something more. They remember the moment when it
first dawned on them that something was wrong.
We were both in Utah and we actually
were both on our knees in front of a window, says Gary Beck. And we just hugged
each other and said, No matter what, we'll find an answer.
They made a promise. That promise
would lead them on a journey that would involve dozens of doctors and months of
frustration as Parker got worse. Parker was showing all the symptoms of autism
one of the most terrifying and hopeless diagnoses a parent can hear. Victoria
remembers her doctor offered little comfort. He put his pen down and looked at
me and said, Mrs. Beck, just let me tell you something. Miracles don't happen
in these situations. If you're looking for something like a Lorenzo's Oil, it
doesn't exist. So why don't you stop wasting your time trying to find one. Gary
and Victoria Beck set out to find a treatment for their son's autism.
At least 550,000 American children
suffer from autism and the numbers are on the rise. Imagine your child
disconnecting from the worldùa child whose eyes look, but don't see, whose ears
hear, but don't listen, whose cries never end and doctors offer little help.
We don't know what's wrong with this
child, says Victoria Beck. We'll call them autistic, and we'll just kind of put
them all in a box. And we don't know what causes it. We have no idea how to fix
it.ö Making matters even worse, doctors have often blamed mothers for somehow
causing their children's autism.
Refrigerator mothers was the term that
was being used, says Dr. Bernard Rimland, director of the Autism Research
Institute, an internationally recognized leader in the field. He remembers how
mothers were unfairly described. They were cold and dispassionate and really
didn't care much for their kids, he says. And their kids decided that they
would just sort of become autistic rather than having to interact with a mother
who didn't care much for them. That was the theory and it was believed by close
to 100 percent of the professionals who dealt with the parents.
In the Beck's case, a psychologist
said that maybe they were the problem. He sat down with me and said, Victoria,
we have to figure out who we are treating here, you or Parker, recalls Parker.
And I said, ôI don't care who you think you're treating, I'm telling you
there's something wrong with my son and either you jump on board and help me,
or I'll go out this door right now and I'll walk down the street, keep walking
until I find a doctor who will.
It wasn't just Parker's behavior
plaguing his parents. It was Parker's health. For two years he suffered
constant diarrhea and vomiting. Then in 1996, almost two years after his
parents say Parker got sick, they brought him to the University of Maryland
medical system, where he underwent a test called an endoscopy to try and find
out what was the matter with his digestive system. Ultimately the test told
them nothing. It was just another frustrating dead end or was it?
A few days later, something completely
unexpected happened Parker's diarrhea disappeared and he began sleeping through
the night for the first time in two years.
Ten days after the procedure Parker's
therapist called me downstairs and said, I think you better come and take a
look at this, says Victoria. And Parker, who had been totally non-verbal was
now reciting flashcards as quickly as she could hold them up.
This is a boy who hadn't talked for
two years. She was holding up a picture of me and he was saying, Mommy. And
then she held up Gary's picture, and he said, Daddy, says Victoria. We were
stunned.
They hadn't heard him saying daddy for
a long time? Never, says Gary Beck. He mumbled it before he lost his language,
but this was as clear as could be.
For Victoria and Gary it was nothing
short of a miracle. Their little boy was back, talking and listening. But they
worried how long would it last? What had brought about the sudden, wonderful
change? Could it have been the test at the hospital?
We asked the hospital to tell us
exactly what he was given, says Victoria. Give us the dosage of the anesthesia.
Tell us exactly what you do with the procedure.
Together Victoria and Gary pored over
every detail of the test. Finally they learned Parker had been given a small
amount of a hormone called secretin. Used in diagnosing problems with the
pancreas, secretin is extracted from pigs, but very similar to a naturally
occurring hormone in humans. Maybe secretin was responsible she told the
doctors.
They were just really kind of
fascinated, but I think kind of disbelieving at the same time, says Victoria.
Sort of that's a wonderful story, little lady, but that's not what's going on?
We're very happy for you, Mrs. Beck,
now just get out of our face, she says. And what was worse, after giving Parker
one more dose of secretin, according to his mother, the University of Maryland
cut him off. She feared Parker would lose everything he had gained.
The reason the center wouldn't
continue? "Well, we were told at the time that it wasn't FDA
approved," says Beck. The University of Maryland declined
"Dateline's" request to discuss Parker Beck's treatment. But what we
do know is that, the hospital followed the rules laid down for them by the
FDAùrules generally written to prevent doctors from experimenting with risky or
untried treatments. The FDA had not approved secretin as a treatment for
anything, including autism only for helping diagnose digestive problems,
precisely the way it had been used on Parker. Using secretin for any other
reasons falls under what's called "off-label" useùa medical grey area
that in this case many doctors seem reluctant to enter.
How hard was it to get a doctor to say
"Okay, I believe you. Let's prescribe some secretin and see what
happens"? "Over a year after the endoscopy," says Victoria. She
says dozens of doctors said no.
According to Beck, it was as if she
was saying, "I think this has saved my child's life. He's back." And
they're saying, "We don't feel authorized to give it to you."
Parker did not get any more secretin
for months. His parents say that while he did not regress, he stopped
improving. It took months of telephone calls and scanning the internet, but
finally Victoria and Gary were able to find one doctor willing to give Parker
more secretin. And Parker seemed to improve. It was during that time that other
parents with autistic children heard about his dramatic recovery. Last month,
"Dateline" talked to a group of parents with autistic
childrenùparents who had almost given up hope until they heard of Victoria
Beck's discovery and managed to get secretin for their children.
"After that Secretin, no more
diarrhea, potty trained, looking in the eyes, talking. He's talking, he's
talking, five and six words and he's saying, 'Look how pretty outside!'"
says Linda Peacock of her child's progress.
Sherry Battisti says of her child,
"He was staring right in my face, looking at my eyes, looking like, Mom, I
haven't seen you in a year." To date, "Dateline" has learned
from Dr. Rimland that, unofficially, about 200 children have received secretin
and more than half of those have shown some positive response.
"In my book, Victoria Beck is a
veritable hero," says Dr. Woody McGinnis, a general practioner from
Phoenix, Arizona. He was one of the first doctors to take Victoria and her
discovery seriously. He now specializes in treating autistic children.
He says that in his medical opinion,
it's possible that a mother in New Hampshire has discovered a miracle
treatment, maybe even a cure. McGinnis says he believes that for many children,
secretin regulates digestive problems, which in turn causes changes in their
brain chemistry. But secretin is not helping everyone. Last month, Susan
Connors invited "Dateline" to watch as her 7-year-old autistic son,
Patrick, received his first infusion of secretin. It was administered by a New
York state doctor willing to venture into "off label" use of the
hormone. While Patrick initially showed signs of improvement, it faded quickly.
Even a second infusion did not seem to help.
"I think that there's no
assurance that any given child will respond," says Dr. Rimland, "so
it will be very premature for a parent to assume that their kid is going to be
one of those who will experience this as a breakthrough. On the other hand, I
would urge every parent to look into the possibility that their child may be
one of those who will benefit."
So here lies perhaps the biggest
dilemma of all: it appears we may now have a treatment which possibly could
help thousands of children but no conclusive studies have been done yet, so
parents and doctors are operating in the dark. If it works, how much of this
should a child receive? And how often should they get it? Even more
importantly, who should get it? Even for parents who are lucky enough to find
some doctor somewhere willing to go "off-label" and prescribe
secretin, the supply is extremely limited.
So when talking to the parents who
have found doctors willing to supply secretin, they will not risk that supply
by revealing the name of the doctors. "I don't want our supply, Parker's
supply, of it to be cut off," says Victoria Beck. Because it's limited,
they're forced to experiment about how much secretin to give their children and
how often. Today, Parker continues to thriveùhis secretin supply secure for
now.
Could Victoria Beck go down in medical
history as someone who opened a whole new door? "I think she could,"
says Dr. Rimland. "I wouldn't be surprised to find that she has."
Though clinic trials are still
underway, Victoria is convinced that secretin is responsible for helping Parker
escape from the box of autismùthat an overlooked, natural hormone is the answer
to their prayers. Definitive proof that secretin therapy works will only come
after more research. Preliminary tests are underway, but it could be a long
while before secretin is approved by the FDA to treat this disorder.
Secretin Update from Dr.
Rimland/ARI Monday, January 11, 1999 [From the most recent issue of the Autism
Research Review International. Thanks to Paige Fivecoat on the Secretin-support
list] January, 1999
The secretin story broke in early
October. In quick succession, there appeared our secretin editorial in ARRI
12/3, Victoria Beck's superb presentation on October 3rd at our DAN! conference
in Cherry Hill, NJ, and the Good Morning America and Dateline TV shows on
October 6th and 7th.* Dozens of newspaper and magazine articles followed. The
Ferring Company sold out of secretin by October 16th. Parents, doctors, and
university medical centers are scrambling to purchase new supplies as more
secretin trickles into the pipeline. Efforts are underway to increase the
supply. The good news is that confirmatory evidence of the power of secretin
keeps coming. A national newspaper told of Florida pediatrician Jeff
Bradstreet's own four-year-old son, Matthew, shocking his parents by holding
his first normal conversation with them the day after his first secretin
infusion. And Virginia pediatrician Lawrence Leichtman told me of his
"miracle case:" a five-year-old who had previously said only two
words amazed all in the office by saying, 15 minutes after his infusion,
"I am hungry. I want to eat." Most cases are much less dramatic, but
the autism world is excited, and for good reason. More good news, the Feds,
including the FDA, are eager to help! Dr. Duane Alexander, Director of the
National Institute of Child Health and Development, and his assistant for
autism affairs, Dr. Marie Bristol-Power, have been extremely helpful and
supportive. I have been to two NICHD secretin meetings in Washington in the
last 30 days, arranged by Dr. Bristol-Power. Following is the abstract of the
presentation I gave at the December 14th meeting arranged by Dr. Bristol-Power
to expedite the clinical trials the FDA requires.
The use of secretin appears to be
the most promising treatment yet discovered for the treatment of autism. ARI
has set itself the task of obtaining, as quickly as possible, at least
tentative answers to the questions of greatest interest to parents and
clinicians, and to researchers embarking on clinical trials. Our Secretin
Outcomes Survey (SOS) is a single-page questionnaire designed to elicit maximum
useful information, with minimum effort, from the parents. The SOS has been
distributed to parents of children undergoing secretin treatment through a
variety of means: Directly to parents, by mail or fax Via physicians In
Victoria Beck's book* Via the Internet. To date just over 200 forms have been
submitted to ARI, and more arrive daily. Many are incomplete or illegible
(faxes don't like No. 3 pencils!), but most are useful and provide valuable
data. Here is what we have learned thus far. Obviously, these findings must be
regarded as preliminary and tentative.
Q. Who is the best candidate for
treatment with secretin? We don't know. We expected to find that certain
categories of autistic persons would be more likely to show benefits than
others; for example: low-functioning vs. high-functioning, those with diarrhea
vs. those with normal bowel function, early onset vs. late onset, boys vs. girls,
younger vs. older. So far none of these anticipated predictors has proven
valid, although there is a slight tendency for those with diarrhea to respond
better behaviorally to secretin, but negligibly so. Judging from what we hear
from physicians who have infused many cases (not from our SOS data) at least
75% (!) of their patients on the autistic spectrum show benefits from secretin,
but we cannot yet identify a subgroup that does notably better or worse than
the total group. Laboratory tests, such as blood secretin or blood ammonia
levels, may prove predictive.
Q. What is the best dosage? We
don't know. The Ferring Company suggests 1.0 to 2.0 Clinical Units of secretin
per kg of body weight (for diagnosing digestive disorders--not treating
autism), and that is what many have been given. However, our data include
dosages ranging from 0.5 to 7.3 CU per kg. If we consider only those between
2.0 CU/kg and 5.2 CU/kg, disregarding the few cases at the extremes, there is
no perceptible advantage to giving the larger amounts. There are slightly more
negative reactions (e.g., hyperactivity) among those given the large doses.
From present data, we would guess that a few years hence, when we know more,
the optimal dose will be found to be between 2.0 and 3.5 CU/kg, on average,
though some will need less and others more. (Some do well on 1.0 CU/kg.) Q.
What benefits are seen? Many, and they are benefits that are important in
autism--eye contact, awareness, sociability, speech, and so forth. An
unexpected benefit, better sleep, was a write-in, mentioned by many parents but
not included among the choices we provided on the SOS form. Several children
began sleeping the night through on the night of the infusion.
Q. What about adverse effects?
About one third of the children showed negative responses, mostly
hyperactivity, and some aggressiveness, for a few days to a few weeks after the
infusion. In only a few cases were the problems severe. However, many autistic
children have periods of disruptive behavior from time to time without
secretin. In the absence of a matched control group of untreated autistic
children, we have no way of knowing whether the problems actually were, in any
or all cases, caused by secretin. There is speculation that behavior problems
are more likely to be seen in the children on drugs, especially seizure drugs,
but we have too little data to confirm or refute this, and other possibilities.
Q. What is the optimal schedule of
administration? We don't know--too few data as of yet. Some say 5 to 6 weeks,
but we don't really know. Our data do tell us, however, that the benefits, when
they occur, can start quite quickly, and seem to peak in terms of percentage of
children who respond, at about the end of the second week. Thus, we have been
telling clinical researchers that the optimal delay between infusion and
evaluative testing is about two weeks. Other questions: While the dim outlines
of the answers to some of our questions are beginning to emerge, we need much
more data in order to come up with needed information. Among the outstanding
questions: Age: How well do adolescents and adults respond to secretin? It is
too early to be sure, but it is beginning to appear that teenagers and adults
improve as well as the children. Repeat infusions: If the first and/or second
infusions do not show significant benefit, is it worthwhile to try again?
Relapses: How long until relapse if secretin is discontinued, and do some
improvements relapse faster than others? While, as mentioned above, five weeks
is sometimes mentioned, we really don't have a good answer to these questions.
Adverse effects: What causes adverse effects? Do drugs, diets, infections, and
other factors influence outcome? We don't know.
Parents and physicians are urged to
help our data collection efforts. We will share what we learn. If you would
like to fill out the SOS questionnaire go to http://www.autism.com/ari/sos.html
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ALL
INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR
GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE
KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED
AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION WHETHER OR NOT TO
VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU
ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.