SECRETIN
October 8, 1998,
The publication of the paper by Horvath, et al, in the use of secretin in the treatment of children with autism spectrum problems has made me try to get quickly up to speed on the use of this treatment. Here is the picture as I see it now.
What is secretin?
Secretin is a hormone normally present in the body that serves as a message carrier from the upper small intestine (just past the stomach) to the pancreas and liver. The message is "food has arrived, please squirt digestive juices onto it!" When the message is received the pancreas and liver deliver their digestive juices to greet food as it passes from the stomach into the upper part of the small intestine.
The cost?
The material costs about $230 - $300 from any pharmacy which can order it from its wholesaler.
How does it work?
It seems unlikely that flushing the pancreas once would be sufficient to produce delayed and prolong improvement in digestive and cognitive function. Most of the important molecules in the body have multiple functions among which the conspicuous ones have been discovered first and others may remain unknown for some time. My guess is that a pulse of secretin through the blood stream unlocks some stuck biochemical or immune mechanism that is involved in the difficulty some people have with processing material that enters the body. That "material" may be food and/or sensory and cognitive input in others. Children reported in Horvath's paper show a much grater volume of pancreas and liver secretions in response to the injection than does the average person. We don't know what that implies.
What are the risks?
No adverse reactions to secretin have been reported. It is a highly purified product of animal (pork) origin. The kind of purification involved in its preparation removes concerns about the introduction of infectious particles such as viruses and prions, which remain a theoretical issue in the consumption of anything to do with animals.
What about side effects?
Several kids have gotten red lips - look like lipstick - for a few minutes after the injection. A few others have gotten a pink flush on their chest. Two threw up after the injection but it seemed as if it was much more due to the struggle involved in overcoming their needing to sit sill for the injection. One child threw up at 3am the following morning and was then ok. A couple have had loose bowel movements and irritable behavior for a week or so after the shot and seemed temporarily "worse" as regards eye contact. Afterward, however, they improved above the baseline or returned to the way they were before. I haven't seen a single child act as if he or she were aware of any sensation connected with the shot even when conditions during the shot were very calm.
Benefits?
Several kids have become potty trained after months of failure and did so within 3 days of the secretin shot. Most children have had dramatic improvement in bowel function if it was off to begin with - both diarrhea and constipation, gas and food intolerance. Most children have had improvement in initiation of speech, eye contact, general awareness, and calmness.
How is it given?
Introduce a "butterfly" intravenous needle into the vein in the arm as for drawing blood. The injection usually requires less than a minute but it can be done more slowly if the situation permits a leisurely pace.
How soon are benefits seen?
Within days to weeks - usually in the first week. If no benefit is seen after 6 weeks, there is still room for delayed improvement.
How often does the injection need to be repeated?
We don't know. In the published reports one child benefited from a second injection after about 9 months. Others might find the shot "wears off" sooner. In any case the prospect of need for frequent injections seems very remote.
How many children benefit?
In the children I have treated and been able to tabulate data showing responses over a seven week period, negative response was seen in 10%.
Which children benefit?
We don't have any selection criteria yet. The Autism Database, of which I am the keeper, should help a lot in sorting this out within the next few months.
What about application to the skin with DMSO?
Dr. Rimland has suggested this method as it would be painless and less expensive. I (and other clinicians with whom I have discussed it) worry that this approach is novel whereas the IV injection is tried and true, inasmuch as it constitutes a routine part of many of the thousands of endoscopies that are done daily in the US and elsewhere. Secondly, the only theoretical concern about secretin would be that its administration might evoke antibodies to it. Application to the skin is a much more effective way to sensitize someone to any substance than its IV administration, so I don't plan on using secretin with this method until someone provides evidence as to its safety and effectiveness.
What about oral secretin?
I am waiting to hear reports on any effectiveness it has by this route. In general peptides would be digested before becoming effective, but, of course, that is not the case with "bad" peptides such as those from gluten and casein, so who knows?
What dosage are you using?
For the moment I think one can use the whole vial for each child regardless of body weight. My reasons are based on two factors. First, the safety of the secretin is so assured that I doubt that any negative factors are introduced by increasing the dose. Second, I think the beneficial mechanism may have to do with a sharp pulse (peak) of secretin passing through the blood stream. I know that some of the good responders to this dose have been in both the tinuy tot and adult ends of the age spectrum.
Comments:
The importance of secretin goes beyond whatever immediate or long-term help it may be to children entering treatment. Its mechanism of action lies within the triangle between the immune system, the central nervous system and the digestive tract where some of us who work with autistic children believe the problem lies. The effectiveness of secretin will attract the attention of academic researchers with the resources to validate the observations of clinicians and explore what it means. Such exploration will open paths to the causes and more effective treatments.
There is an important message in the fact that the secretin phenomenon was uncovered by the mother of an autistic children: Dr Bernard Rimland's fruitful legacy of forming a cooperative union among professions and parents has brought a harvest that could not have been cultivated in the old model of "doctor knows best".
Links to PAC pages on Secretin
The Use of Secretin to Treat Autism
Secretin Update, December 1999: The safety issue
Some history on Secretin and Other Hormones