Polly: Secretin is a hormone made by the cells lining the small intestine. In celiac disease, the gluten damages the intestinal cells that produce secretin. We don’t know how these cells might be damaged in autism, however, many of the autistic children improve when given natural secretin. There are mixed results with the different manmade secretins. [4] For the vast majority of children, there have been no adverse effects from administering secretin, although increased hyperactivity is to be expected for a while after the infusion. Unfortunately, there have been a couple of children who suffered seizures. It may be the cysteine in the solution, the excitement of the procedure, or perhaps the amount of secretin was too much for that child. Some of secretin’s known properties are:
1. Secretin stimulates the liver to produce bile.
2. Secretin helps get rid of leaky gut.
3. Secretin, acetylcholine, and cholecystokinin (CCK) act synergistically to induce pancreatic secretions of enzymes and bicarbonates. (In contrast, serotonin, which is often high in autism, opposes the action of secretin and acetylcholine on the pancreas.) [5]
4. Secretin also induces the release of bicarbonates from the small bowel. [6]
5. Secretin couples to G-proteins. [7] (G-protein defects are suspected contributors to autism.)
6. Secretin is not found in the brain, but receptors for hormones from the same family are found there. [8]
7. Secretin stimulates blood flow to the intestine. [9]
8. Secretin increases immune levels in bile. [9]
Besides supplements of plain secretin, some people are using about a teaspoon of duodenum after meals. Duodenum is a naturally occurring source of secretin and other components of the small intestine. See http://www.krysalis.com
Wally, Sr.: We have been using the transdermal secretin on our son, Wally, Jr., for approximately 5 months. We started the transdermal applications 12/3/99. We did not use any infusions but started with the transdermal applications. Our son is 33 years old and weighs 125 pounds (very thin for his 6’3” frame) and has a seizure disorder.
The first 10 days we used 7.5 cu/day of Ferring (natural secretin) that was compounded with the DMSO and PLO. This was applied to the wrist, back and belly areas of his body. After about 10 minutes of starting the applications in any of these areas, his skin would become red and puffy. This condition would begin to fade in about 4 hrs and would be gone by the next day. We would apply the secretin to a different spot each time we applied it so as to not cause too much harm to any one spot. Now we apply the Hope for Autism through Nutrition The Health Forum—Book 5 22 secretin to his legs with no problems that we can see.
I wore the latex gloves, but noticed that I could taste a slight DMSO taste on the back of my tongue. I will soon try the vinyl gloves as someone has suggested to see if this stops the taste of DMSO in my mouth as well as possibly stopping any possible reaction to the latex that my son might have in the future. The morning after the first application of the secretin we could notice the DMSO breath on our son. We knew what it was since my father used DMSO 10 or 12 years ago for joint pain caused by arthritis. At that time, we became aware of the “DMSO breath” that he developed. So far, after 5 months, the DMSO breath is the only negative that we can report from the transdermal secretin. This is not very noticeable now since the daily dose has decreased.
We started to give the secretin in the evening after bath time and continue with this schedule whenever we make an application. We usually slowly count to 100 as we work the secretin in and by the time the counting is done the secretin is worked in to the skin.
We noticed results within 1 hour of the first application as our son slowly looked at each object in our family room as if he was seeing them for the first time. Other results that we have noticed since starting the secretin are not as dramatic as those that were experienced by the Beck family or others but what we did see represent slow, subtle, and small steps, all of which are positive and continue.
We noticed an increase in verbal language use; in understanding verbal directions and an increased ability to follow these directions; an increase in awareness of his surroundings; increase in his ability to interact with people; and an increase in his ability to control his body and his impulsive behaviors. It is easier for him to smile and to be touched by others. He is now more deliberate in many of his actions. You can tell from watching him that he is thinking about what he is doing and not “running on automatic” all the time. These are all positive small steps that we see from the vantage point of an observer.
After the first 10 days of the 7.5 cu/day dose, it was suggested by our doctor to reduce the dose to 2.5 cu/day or 2.5 cu twice per day, totaling 5 cu/day in an attempt to find a dose that would be the best for our son. We would have to experiment for a while to see what dose worked the best.
We tried the various doses as suggested by our doctor. and with input from our son we are now at a dose that is equal to approximately .8 cu per day – we apply 2.5 cu every 3 to 4 days.
As I mentioned earlier, all of the small improvements that we saw and continue to see, we have seen from the vantage point of an observer. You will also notice that most of the reports that you read about the secretin effects, either positive or negative, big or small, all come from the observations of the parents, teachers, rehabilitation workers or other staff who work with the autistic person who is taking the secretin either by infusion or transdermally. Very few reports come directly from the autistic person. Some parents have reported that they saw only slight improvements or no improvements in their child and opted to stop the secretin therapy because they saw no benefits from the secretin. From our observations from the “outside” this could have been a possible outcome for our son if it were not for his ability to type to us what he was experiencing on the “inside”. I would like to share with you a few excerpts from a running conversation we have with him about what he feels about the secretin and how it is impacting his life. It is from information from these conversations that we were able to adjust his daily doses of secretin to his present level of .8 cu/day which he says is optimum for him. Autism Interventions 23 12/8/99 “I am not regurgitating to the extent that I was. Each key remains essentially still. (Each key on the computer keyboard prior to secretin appeared to our son to be vibrating and moving so that the “I” would appear as an “H”, an “F” would appear as a “P”, etc.) With reduced movement (of the keys) typing will be more independent.”
12/14/99 “Gut is feeling better fire is out.” (Our son has told us on several occasions that from the first secretin application that the burning sensation he had had in his gut was gone.)
1/16/00 from a letter written by our son to another autistic young man: “Though I look as I always have, upon receiving the secretin I’m totally a new person on the inside. I now can taste food that previously had no taste for me. I can eat vegetables now and know which vegetable I am eating by its taste rather than by its color or shape. Textures of the foods are now tremendously important to me since I can now feel in my mouth the difference between potatoes and meat or between moist meat and dry meat or food that is meat you might call hamburger and meat that is roasted and cut up. The joy of realizing what eating brings to a person finally has been unlocked for me since starting on secretin.
Too, I get excited now realizing that this treatment I am receiving is only the beginning to open each of my closed sensory pathways. Each of my senses reacts to secretin in much the same way as does my sense of taste and touch in my previously numb mouth. Especially noteworthy is the effect on how I see the motion of moving objects. Previous to the secretin, the motion of some object from point A to point B would be perceived by me as being choppy and unsmooth as if watching some early vintage motion picture that displayed only a limited number of frames per second on the screen. Now the movement I perceive is smooth and fluid much like watching a modern video of a car moving on the open road from point A to point B.
Other effects on my senses point to the opening of the inexperienced and potentially exciting wonders of the world that I have only read about and have only experienced in my mind. The potential results from this sensory awakening are truly yet to be realized in their entirety but I anticipate each and revel in the thoughts of their linking my imprisoned mind directly to the world that I have not actually experienced except through the experiences of other people.”
I will summarize what our son has typed to us while we were trying to regulate the secretin dose in outline form:
1) All senses are now working.
2) Only the sense of sight is affected by too much secretin – “It is like you are shining a bright light into my eyes and I can’t shut it off when the optimal level is exceeded.”
3) Secretin builds up in my system as time goes on and as I get daily doses.
4) The residual secretin plus the daily dose adds up to be an overdose situation that effects my sense of sight.
5) As the residual secretin plus the daily doses continue to build up my sight is effected first then as the total of residual secretin plus daily dose increases even higher I get hallucinations and horror filled nightmares like I did when I was on Tegritol for seizure control then as the residual and daily dose continue to increase even more I get light headed and dizzy and am afraid to go up stairs to my room for fear of falling backwards on the stairs. This is why I have Hope for Autism through Nutrition The Health Forum—Book 5 24 been sleeping on the family room couch for the past few weeks.
6) Because of noticing that these effects (mentioned in 4 and 5) diminishing in proportion to the amount of secretin that I have refused over several days I figure that my optimal dose of secretin is about .8cu/day(or 2.5 cu every 3 to 4 days)
Because of what our son has been able to communicate to us about how he feels we will continue with the secretin at the .8cu/day until he tells us differently. Good luck with your child and with the secretin and remember to ask him what he is experiencing on the “inside”.