|This is a copy of the now-defunct webpage: http://www.krysalis.net/autism.htm|
This paper is for information only. It represents the observations, views and opinions of the author, but is not a recommendation for treatment. Anyone reading it should consult his/her physician before considering treatment.
I do not have an autistic child and do not treat autistic children. However, almost two years ago Bernie Rimland, director of the Autism Research Institute, (4182 Adams Avenue, San Diego, CA 92116) put me in contact with Victoria Beck of New Hampshire. She had recently discovered secretin was helping her autistic son, Parker. She had received two infusions of secretin for Parker at the University of Maryland, discovered a profound improvement in his autism and was refused further treatments. After an extensive search she found a doctor who would prescribe secretin for her, but could find no doctor who would infuse it. Bernie Rimland was familiar with my experience with bringing vitamins through the skin using DMSO and thought it might be helpful to Victoria. He thus put me in contact with her. This was the beginning of a delightful experience for me not only working the technical problems, but getting to know Victoria where the descriptors devoted mother, brilliant, and unselfish humanitarian can only partly and inadequately describe her. After many weeks of long frequent phone conversations with Victoria, the preliminary tests showed no toxic reaction to DMSO and finally she was successful with a transdermal application of secretin. This allowed her to continue with her secretin-autism treatment discovery. In my case, it got me fascinated with trying to understand the biochemistry of how secretin performed the task. This was also the subject of many conversations with Victoria, and I believe we made considerable progress. I am presently very pleased that at this point Victoria and her husband, Gary, are receiving the public recognition that they deserve with a review on Dateline in October 1998, and a feature article on the front pages of the NY Times and the Wall Street Journal, March, 1999. With the numerous people now gaining experience with the treatment, I am left with the memory of a delightful experience that I will always cherish. As the development of using secretin to treat autism matures, I see my role as having reached a state of completion since the next stage requires treating patients which I can not do. However, before I move on to other challenges totally, I have some additional thoughts/clarifications that I believe might be helpful for some.
I have been receiving many e-mail requests for a better understanding of how DMSO can be used for a transdermal application of secretin. I thought this information had already been provided by Victoria, but apparently not everyone can find it. I will thus try to present a brief, but adequate description here. In summary, I don't treat patients and thus can only repeat what I have been told. DMSO can transport secretin through the skin and into the blood stream efficiently enough to be effective for treating autism. The general approach is to wet the skin with DMSO (99.9% pure), apply some secretin powder, and then add more DMSO over it (using an eyedropper). It is not important what area of skin is used, but it may be desirable to vary the location to minimize the irritation to any one spot. Care must be taken to clean the skin so undesirable components are not transported into the blood stream along with the secretin. DMSO has a tendency to dehydrate the skin so some irritation may result. This can be remedied by dabbing on water or adding some water to the DMSO. I don't know if adding water to the DMSO will reduce the transfer of secretin. You will have to discover that for yourself.
There is a question as to how efficient this is in terms of utilization of secretin. Experience has demonstrated that secretin is soluble enough in DMSO to be transported by it. However, there is some indications it is not highly soluble in DMSO. Thus, one suspects that the efficiency of use of secretin by this transdermal approach has room for improvement. This could be approached by simply using more DMSO, or by adding components that will increase its solubility in DMSO or going to a different transdermal carrier. Quantifying this should be a trivial exercise for a chemist familiar with transdermal transport technology and who also has a capability to perform the final test, the test as to how well it works on a patient.
It is my belief that in the long run, transdermal application of secretin will prove to be far superior to infusions. Infusions inherently involve an invasive treatment and a large pulse of secretin that may give the patient problems. The transdermal approach, applying secretin more frequently in lower doses, should allow a more continual approach, resulting in less shock to the patient, and more capability to adjust the application rate in response to observed reactions. It also should result in a more efficient use of secretin. Given the attention it is now getting, I have little doubt that improved effective transdermal products will be arriving on the market in the near future.
I should mention that the secretin you are using is not secretin. It is prosecretin. When hormones are synthesized in your body they are synthesized to the point of being the pro-hormone (prosecretin) and stored as such. They are thus in a position where they can dissociate, releasing the hormone rapidly, upon demand. The prosecretin is stored in the duodenum and disassociates to release secretin upon sensing the acid from the stomach. Secretin itself has a very short life in the blood stream. If secretin was used, it would not be effective because one would have to exercise an impossible level of control, applying it only when the stomach acid progresses to the duodenum. Since the secretin you are using is derived from pig duodenum, where it is was stored, it can be concluded without looking that it is prosecretin and not secretin. Thus, when it is applied it is selectively absorbed by your duodenum and stored for further use (by a wonderful, but not understood mechanism.) This brings a question to my mind: Is the synthetic secretin really secretin and not prosecretin and can that explain why it doesn't seem to be as effective?
The best overall description I have found presenting a detailed overview of the biochemistry of secretin is presented in the "Textbook of Medical Physiology" by Guyton & Hall, 1996, Published by the W.B. Sanders Company. The book presents the known effects of secretin, but does not address its recently discovered relationship to autism.
Briefly, secretin is a hormone that has a multitude of effects, but the best understood effect and possibly the one that best explains its benefit to autistic children is its influence on the digestive system. Secretin stimulates the release of a bicarbonate flush from the the pancreas into the duodenum, as needed, which neutralizes the stomach acid as food makes its transit from the stomach to the intestine. However, this is more meaningful that first appears. This same bicarbonate flush also transports the digestive enzymes, synthesized in the pancreas, into the duodenum. They are necessary for digesting carbohydrates, proteins and fats. There is a similar bicarbonate flush in the bile ducts that helps to transport bile into the duodenum. The bile is necessary for emulsifying fats, making them digestible.
A child lacking the ability to release secretin will have a multi-pronged attack on the digestive system. First, the unneutralized stomach acid will severely damage the intestine. Second, there will be a deficiency of digestive enzymes and bile to process food. It is no wonder that they often have stools that visually appear to contain undigested food of all types. With such a damaged digestive system, the absorption of nutrients from the intestine is severely impacted. This alone could explain the deterioration of mental function associated with autism. (There may be other effects also.) When secretin is infused, the first thing that happens is the stools turn normal, indicating a better functioning intestine. At this point the presentation of autism diminishes.
There is another specially interesting point. The fact that the autism is greatly helped is also a positive statement that at least some forms of autism are reversible (in the earlier years). The mental dysfunction does not represent permanent neurological damage.
The autistic children that exhibit severe dietary restrictions-willing to eat a very limited number of foods, familiar to most mothers of autistic children, are the set that should be helped by secretin. There is another set that can eat anything. These children are probably not suffering from a digestive problem, probably do not lack secretin, and are probably the ones that are not helped by secretin.
An alternative or complement to secretin treatment: There is an ongoing debate as to whether the repair of the digestive system due to well known effects of secretin is sufficient to explain all of its benefits for treating autism, or if there are also some critical direct effects on the brain. It occurred to me that there is a highly developed technology called intravenous feeding that has kept people alive for months and even years. Evidently, it has been developed to the extent where it can provide a complete, sufficiently nutritional input. I propose that if the sole benefit of secretin is to remedy the digestive system and thus the nutritional input to the autistic child, then intravenous feeding should accomplish the same task and give the same results. As a scientist, I find this to be a fascinating experiment with inconvenience, but no known health risk to the child. I also believe that it could provide a reasonable alternative for some patients. It is easy to criticize this concept in its early stages due to the inconvenience of present intravenous feeding methods. However, never short change the inventors. If it is shown to be effective, I am confident that methods that improve convenience will surface.
I suspect that if this intravenous treatment shows promise for treating autism, we will discover that using it in combination with secretin treatments to be more effective than using either alone.
This exciting technology is very new and is proceeding to be explored with a speed similar to what happened with secretin, but is approximately a year behind. As with secretin, reports of the latest developments are discovered in news releases, not journals.
During the many phone discussions that Victoria and I had, there was a time a little over a year ago when Victoria mentioned that she heard a rumor that there were two cases where the autistic children also had leukemia. When they received a bone marrow transplant as part of the treatment for Leukemia, they no longer appeared to be autistic. This was a rumor and we could not trace it. It had been discounted because no one could make sense out of it. However, it continued to bother me. It may have been true, and if so, what was going on? Then I suddenly realized what must have happened if these reports were true. The bone marrow transplant would have put an entirely new set of genetic material into the child from someone who was not autistic and this was enough to correct the disease. The rumors could make technical sense. The doctors had performed a successful genetic transplant and did not recognized it! I got back to Victoria with this, and encouraged her to make another effort to trace the rumors. She tried, but failed. This insight still bothered me because it suffered from another problem. I was unable to identify the specific biochemical mechanism by which the new genes where able to take control of and thus provide for adequate production of secretin.
I let this drop temporarily because I could not see any way to take it further. However, in the past several months I have become aware of what appears to be the beginning of a medical miracle. It started with the discovery that cord blood (umbilical cord blood) from the birth of a baby, which is normally disposed of, is an exceptionally rich source of stem cells. It is also exceptionally easy to obtain, non intrusively, and plentifully. It is normally disposed of. It was also found that it could be used for bone marrow transplants. In fact, it appeared to be easier to achieve a match that would avoid immune rejection, typical of transplants, than using the marrow extracted from an adult donor. Abruptly another light turned on and I understood not just why the cord blood could be used for bone morrow transplants but how it can and does introduce new genetic material that can spread not just to the bone marrow of the recipient, but also to every organ of the body. It can then function as new cells in those organs with the new genetic material of the donor. With this insight, one would logically conclude that it was a very promising treatment method for autism and numerous other genetically carried diseases, whether the genetic malfunction was inherited or caused later by a chemical insult such as a vaccination.
1. The newly discovered availability of stem cells from cord blood: The discovery that the blood saved from the umbilical cord from the birth of a child was rich in stem cells and could be used for bone marrow transplants was the key turning point for this technology. There is already a national cell bank for bone marrow transplants, but obtaining such bone marrow is not easy on the donor. This new discovery opened up a vista of genetic diversity for the bank that is almost unlimited and totally nonintrusive on the donor. It is a thrown away waste product (or at least was so formally).
2. Stem cell differentiation: When stem cells are injected into the blood stream they are carried everywhere in the body and stick in various organs, possibly all of them, not just the bone marrow. Once they take up residence in any particular organ, they look around, identify the type of organ they should be, and go through a process called differentiation where they start forming that type of cells. This process of differentiation has been well studied and documented. Thus, they can form new cells, containing the new genetic information of the injected cells, in every organ of the body. At this point they share occupancy of the organ with the original cells in a way that is not understood and will certainly be the subject of future research. In the case of a bone marrow transplant, the original cells have been destroyed and they form new marrow cells, which is easy to detect. Their presence in other organs that are functioning is more difficult to detect. However, if the original, host cells have a genetic defect that is causing a disease, there is no reason to believe the new cells will have it (provided the donor doesn't), and the new cells thus have an opportunity to compensate for the defect by manufacturing the missing enzymes that are necessary for normal, healthy function of the organ - such as the production of secretin. Upon looking at the mechanism, it is clear that its potential, if it meets expectations, goes far beyond the treatment of autism.
3. Bone marrow destruction was found not to be necessary: I was concerned that the process carried out in a bone marrow transplant, the risky initial destruction of the host bone marrow, might be necessary to minimize the threat of rejection. However, another person watching a news program I missed said that it reported that bone marrow destruction had been found to be unnecessary for a successful treatment.
4. Transplant unusually compatible: A reason has been identified that explains the ease of use of cord blood for transplants. The stem cells are so young that they have not yet gone through the process of identifying what should be host cells and what should be foreign cells. Thus, they will not reject the new host, which is a problem with conventional bone marrow transplants. We are aware of the transplant problem of a transplanted organ being rejected by the immune system of the new host. However, it is not as commonly known that for bone marrow transplants, there is an additional risk of the new, transplanted cells forming an immune system that rejects the new host. This does not happen with stem cells from cord blood, helping greatly with the process. Beyond this, if these new cells do form an immune identification system, it will be in the host body, recognizing that body as normal. It is also possible that this adaptation will be sufficient for the existing host immune system to recognize the new cells as normal and not foreign. Much of this latter postulation needs confirmation.
5. The first test on an autistic child may have already happened: I have taken the opportunity to discuss this potential medical miracle with many people over the past few months. In one recent case the person told me he heard a report on television that stated that an autistic child had already been treated with stem cells and the results were successful and long lasting (so far).
6. The chemical complexity of the disease is no longer an issue: If one looks at the complexity of chemical processes taking place in any one cell, it is far beyond comprehension. Trying to design an approach to correct an individual process, or several of them, is truly a formidable task. However, one must remember that our genes do this on a daily basis with what appears to be the greatest of ease. So many genetically based diseases appear to involve extremely complex chemistry, only a small part of which can be identified. How can we hope to perform a correction in the middle of this morass. If we try to design it, we have an extremely difficult time indeed. However, a genetic correction with a complete complement of new, healthy genes has the potential of performing corrective tasks of almost unlimited, self directed complexity with the ease with which a healthy cell normally carries them out. Thus, even though the biochemical basis for diseases such as autism seem impossibly complex, they are not too complex for correction by genetic modification. In fact, one can easily arrive the conclusion that this approach is realistically the only possible approach for curing genetically carried diseases. If it works for inherited genetic diseases, we have no reason to believe won't work equally well for diseases caused by genetic damage occurring after birth by a chemical insult such as a vaccination. This should further illuminate why the medical research community is becoming so excited about this discovery.
7. Due to the ease of stem cell availability, the safety of experimentation, and the profound potential, stem cell research is progressing very rapidly and is probably now taking place at every medical research establishment in the world. With this in mind, many of the unanswered questions should get answered quickly along with confirmations of successful treatments and initial identification of limitations. It appears that the most recent discoveries may be reported in the news before they reach the journals.
Over a year ago when I first talked to Victoria and learned of her secretin discovery, upon taking a close look at it I concluded that was so technically sound that it was truly a world class medical discovery which would eventually be validated and wrote her a letter to that effect. This has come to pass. I have a similar belief about this technology. It seems to be technically sound and about a year behind secretin in its development. We can expect that the next year will tell the story, or at least a large part of it. It will be an exciting year, and hopefully a promising one for the parents of autistic children and the children themselves. It really may be the long term or even permanent cure for autism.
I would be delighted to learn if any of these concepts get tested. It may also be sensible to add a section of testimonials to this Health Note so others can learn of the results also. So, please e-mail me if you think it is appropriate. I won't post any testimonials with your name without your permission.
1) 3/12/99-I received a phone call from a mother who told me: 1) She started with infusions of secretin with her son and they were helpful, but when she changed to the transdermal approach using DMSO, which allowed her to use frequent, small doses, the effectiveness of the treatment improved dramatically. 2) She found that adding some water to the DMSO improved the solubility of the secretin and improved the effectiveness of the treatment. 3) At one point in her life her father was very ill and she went through a long period where she had to feed him at home intravenously. She thought that if the intravenous feeding approach was successful in treating autism or simply helped with it, it would not be an unreasonable option.
2) 3/18/98-I received an e-mail from a lady who said that on a number of occasions she had the opportunity to observe autistic children who had been admitted to the hospital for problems other than autism and had been put on intravenous feeding. She observed that their autism seemed to improve very noticeably, and when the intravenous feeding was terminated, the autism returned to its original characteristics. This may be a promising indication that intravenous feeding may be found to be quite helpful.
3) 3/18/98-I talked to a doctor from a stem cell treatment center ( he did not want to be identified) and he believed that it would not be possible to conduct a successful stem cell treatment without first severely suppressing the immune system of the host, such as destroying the bone marrow. Otherwise, he was confident that the immune system of the host would rapidly destroy the infused stem cells. He was very interested in tracking down the rumored cases of autistic children receiving a bone marrow transplant (for cancer) and then not being so autistic. If anyone could help with that, please do.
4) 3/23/99 - Stem cell Storage: Cord blood can be stored by California Cryobank. You can learn all about them on their web site: www.cryobank.com.
5) 4/9/99 - I received an e-mail from a mother with an autistic son. She said he did not respond to treatment with secretin. However, following the concept of nutritional deficiency being the primary cause, she went though a process (with her doctor) focusing on replacing the intestinal flora. A flora consisting of healthy (good) bacteria is essential for producing many essential nutrients. When it gets taken over by "bad" bacteria, which often happens, it results in a severe nutritional deficiency. This is well know by all doctors, and there are procedures to correct this including using yogurt and formulations available at health food stores. When she followed this procedure, the autism symptoms were greatly reduced.
6) 4/9/99- I have a new insight concerning stem cell treatment in an attempt to achieve a cure for autism (or any other genetically carried disease). I believe the basic concept presented above is correct, except I think a bone marrow transplant, involving the initial killing of the patient's existing bone marrow and replacing it with the new (healthy) cells, will be required for not just one, but two essential reasons.
1) It is probably true that it will necessary to totally suppress the immune system (by totally killing the bone marrow) of the patient to avoid it killing the new stem cells (with new, healthy genes).
2) The new bone marrow, consisting of the new, transplanted, healthy genes will serve as a continuous, long-term, resupply of cells with healthy genes that go everywhere in the body. The red blood cells don't have a nucleus and thus don't carry the healthy genes. However, the white blood cells do. They are also taken up by every organ in the body as part of our distributed immune system. Some of them are likely to dedifferentiate into the organ cells themselves, resulting in the organs now having a component of cells with healthy genes. In time, due to the continuous resupply from the blood (bone marrow) this fraction should grow. I believe this continuous resupply mechanism will be essential for this genetic modification process to sustain itself.
7) 12/16/99 An article just appeared in the New England Journal of Medicine reporting on a study where treatment with synthetic human secretin was found to be ineffective in helping autism. I send the following e-mail response:
Adrian D. Sandler, et al
Re: "Lack of Benefit of a Single Dose of Synthetic Secretin in the Treatment of Autism and Pervasive Developmental Disorder" The New England Journal of Medicine, December 9, 1999, Vol. 341, No. 24
You have carried out the wrong experiment and have given the incorrect impression that treatment of autism with "secretin" is ineffective. Because of the broad distribution of your paper, it has the potential of causing considerable harm and suffering.
Let me explain:
The only form of secretin that has ever been effective has been prosecretin, not secretin. For years, the extraction of "secretin" from pig duodenum has been missnamed "secretin" when it is actually "prosecretin". This makes all the difference in the world. Prosecretin can be very effective and secretin has no chance of being effective. I anticipated that this misunderstanding would eventually cause problems in the focus of those attempting to make a synthetic version and discussed it many months ago on my web page: www.krysalis-sparx.com
Briefly: If you want to review the difference between a hormone and a prohormone I would suggest you read a treatment of it in Guyton & Hall, "Textbook of Medical Physiology" ninth edition, 1996. Hormones are synthesized in the body initially as large molecules which are sequentially broken into smaller molecules which eventually leads to the prohormone. The prohormone is then stored in cells for ready use. When called upon, it makes the final transformation releasing the hormone itself. This can be done rapidly because only one simple step remains.
Hormones are not stored in the tissue, prohormones are. Thus, the extraction of "secretin" from the tissue of the duodenum of pigs is prosecretin, not secetin. The autism community is well aware that the pig extraction works and the synthetic products don't. I am confident that this is because the wrong form of secretin has been synthesized, which is the basis of your study.
Secretin: Secretin is synthesized in the duodenum where it is stored as prosecretin. When the stomach acid (in chime) contacts the duodenum, the stored prosecretin releases secretin which then stimulates the pancreas to release a bicarbonate flush into the duodenum, neutralizing the stomach acid. This flush also takes place in the bile ducts. The flush sweeps in with it the digestive enzymes as will as bile. Both are essential for digestion of food. Once the secretin is released, it is very rapidly removed from the blood, after doing its job.
An injection of pure secretin will simply overstimulate the pancreas, briefly, possibly causing damage, and then vanish. Since it is not stored, it can have no lasting effect. The only release of secretin that can be beneficial is one that is timed properly with the arrival of stomach acid in the duodenum. It would be impossible to time injections usefully.
When an infusion is made with prosecretin it remains in the blood long enough to allow the cells of the duodenum to recognize it and assimilate it. It is then stored in the duodenum cells for release as needed, perfectly timed with the arrival of acidic chime from the stomach.
One class of autistic children are characterized by tolerating only a very limited diet. When treated with prosecretin from pig duodenum, not only is their autism improved, but also their stools change from being whitish, full of undigested food and fat, into normal looking stools. This is the common observation of many mothers.
It would thus appear that a major contributing factor to one class of autism is the severe lack of nutrition entering the blood and thus getting to the brain. An injection of prosecretin corrects this, allowing greatly improved nutritional support to the brain, mitigating the autism. It does not appear to completely eliminate the autism, but I have received numerous e-mails from mothers who have found the benefits sufficiently dramatic to never want to go back to the pre "prosecretin treatment" world.
This is brief, but leads to a hope:
Your have made a start and it is now time to finish the job with at least two steps:
1. rerun your experiments with prosecretin and add stool measurements to your diagnostics.
2. Alert the company synthesizing secretin that they need to make prosecretin instead. This will change an impotent product into a potent one.
I should also comment that if such a product is made it will have broader application than just autism. I know a woman who has severe irritable bowel syndrome and has similar stools (containing obviously undigested food). I suspect she is also having a secretin problem. The consequence for her is severe depression instead of autism.
David Gregg, PhD
email@example.com; www.krysalis-sparx.com; Ph/Fax: 925-284-5434
Connection with Crohn's Disease Web Page: We have made what might be a very helpful connection between Crohn's Disease and Autism, resulting in a clearly identified treatment possibility. To read about it see my Crohn's Disease web page linked at the top of this web page. Go to the end for Update 1/01.
"Breaking the Vicious Cycle" by Elaine Gottschall: As part of this, I would strongly urge everyone with an autistic child to purchase and read the book: "Breaking the Vicious Cycle" by Elaine Gottschall. It's primary focus is intestinal disorders as related to Crohn's Disease, but it applies directly to the class of autistic children that have associated severe intestinal problems. These are also those that are responsive to treatment with secretin. The book focuses primarily on a particular cause for the disorders, the inability to fully digest complex carbohydrates. This not only minimizes their nutritional value to the person, but the undigested carbohydrates then feed the wrong type of intestinal bacteria, which then can produce toxins that further damage not only the intestine, but can get into the blood stream and even do brain damage. The dietary limitations and responses are exactly the same as those so many parents have reported for their autistic children. It clearly explains why the children have the limitations, and why this could affect mental function. It also presents easily followed dietary approaches that have been shown to reverse the problem. It is a must for every parent of an autistic child. It may not be the total solution, but it definitely should be included as part of the solution.
Subject: Pig Duodenum
Sent: 2/15/20 3:43 PM,
From: annette genovesi, firstname.lastname@example.org, To: email@example.com
I can't tell you how wonderful that pig duodenum has been both for myself and my autistic son, Adam. It has totally taken away all of his gastric upsets, which were considerable. As a result , he is so much calmer and happier. He has the fragile x syndrome , which is a genetic cause of his autism and mental retardation, so he has many different problems. The pig duodenum has totally alleviated a major physical one. I am ever so grateful. I myself have always had digestive upsets and problems. Now I find the duodenum really takes away ALL of the symptoms. Considering with my son, all of the expensive and time-consuming things I have tried over the years have been no help at all, so this is truly a miracle, as it works.
I thank you so much, and I thank my brother-in-law Robert Myers for introducing me to your site.
Sincerely, Annette Genovesi
Subject: Re: MSM & Autism;
Sent: 2/25/20 7:43 AM;
From: fryedj, firstname.lastname@example.org
To: David Gregg, email@example.com
Hi David, I am completely blown away after reading your article outlining the DMSO/Chron's disease connection you have posted. You have put a lot of research into this area with a lot of open minded insight. For me this is really, really exciting. My son, James, has been diagnosed as autistic spectrum disorder since 3 and is now 7. Since his neurological workup was normal but he had a neurologically based disorder we were obviously confused and saddened. However, when bringing up his the fact he has had long standing, chronic allergies (skin, sinus, anti phlactic, digestive, etc.) the team of medical pros said that allergies and autism do not have a link.
He was a really well baby who deteriorated into a really ill two year old. So we went to work on his body. If anything we wanted to make him feel better - development aside. Our philosophy is that if you don't feel well, and feel really, really unwell at such a young and important age, how can typical development happen. I mean you body is working so hard on infection, disease process, inflammation, allergies, etc. how can you expect perfection? Well over the course of years (literally 6) we set about correcting all of the little problems we could. One at a time. One year of anti-fungal for candida, athletes foot, ringworm, etc. Another 4 years working on allergies - food intolerances - which is a complete joke. Once you remove foods at the rate he was becoming sensitive we had nothing left to feed him. And along the way somewhere we realized he had some sort of bowel disorder. It was sad. We had accepted James's subtle and changing bowel habits all along the way as being normal for James. He was our first child and he seemed to slowly develop symptoms along the way. Remember, he could not express himself with words since the major area of developmental delay was lack of communication. Another sad point is, he gave up ever feeling well.
I am sure he had many, many miserable bouts of chron's disease or inflammatory bowel disorder and just went along without realizing what it was to feel well. Researching possible treatments for James we (of course) ran across Secretin. Well, as with any other method or protocol we had to access it if it was appropriate for James. His body is his own and we will not inflict any plan on him just because it worked for another child with the same label. Well Secretin made sense since he had so many errors in digestion. We had just completed the anti fungal and had a upper and lower GI workup (not easy to talk the doc into) and had a very rude awakening. He had extreme gastroenteritis coupled with severe constipation...very upsetting to realize this was what he was really living with. We went to our other doctor and with great cooperation found secretin (human synthetic) and had it compounded into a transdermal application. With James's history of allergies human synthetic secretin was the most responsible choice in case he wold be allergic to any of the properties of the porcine product.
The compound form contains the secretin in a base of DMSO. We applied the topical secretin every other day or so for 3 months more or less. Well it was really helpful, but from time to time it was too "hot". Meaning we only gave it to him if he needed the digestive support. Sometimes he developed loose stools if we gave him too much. However, physically he was feeling much, much better. We slowed down the applications to an as needed basis according to his physical need to support digestion. On another note, several months later I "re-read" some information exclusive to dietary intervention for autistics how a gluten/casein free diet may be helpful as a biological intervention in improving autism. . In the front of the book it mentions a metabolic disorder of the phenol sulphur transferase enzyme group in kids with developmental disorders where they do not have enough free sulphur ions in the body to detox phenolic compounds. The overload of phenolic toxins and overload causes trouble in many ways - developmentally, attention, behavior, etc. James fit the criteria for a deficiency of the detoxification pathway by many of the physical features common in the disorder. Night sweats, red ears, facial flushing etc. Well this is really, really significant since one of the most phenolic compounds available is anti-histamines. And James, unfortunately, had been taking an antihistamine EVERY day for SIX years to control his uncontrollable allergies. At the time the book was written in the early 1990's the only thing to do for this phenomenon is to remove phenolic foods from the diet to relieve the enzymes enough to do a better job. This is because in the early 1990's sulphur was not something readily available for supplementation. Parents were doing Epsom salt baths (magnesium sulphate) hoping for some transfer of the sulphur to the body.
WELL, IT DAWNED ON ME IMMEDIATELY, THE DMSO USED IN THE TOPICAL SECRETIN IS SULPHUR. We may have introduced the answer for James's body to heal and not realized it! The human synthetic secretin may not have been nearly as important as the DMSO preparation for supporting James metabolic inefficiency to detoxify phenolic compounds by addding sulphur to his body system. Enter MSM. The biologically available DMSO metabolite which is 38% sulphur which is a convenient supplement free of side-effects and virtually non-allergic. I researched the benefits of MSM and it's compadability for James' condition and went ahead and made the choice to use the supplement in place of his allergy medicines. On Martin Luther King, Jr.'s birthday, January 2001, we took the jump and removed anti-histamines from James's daily routine and substituted MSM. 'Bout 3 grams a day between morning and lunch. We use crystals mixed in 7-up - he loves it. Well, only 6 weeks later it has been nothing short of a miracle. It seems that the DMSO healed his "gut" and daily MSM has picked up the rest of the work. I am going to make a long list of benefits we have noticed/enjoyed: Allergies are 95 - 99% relieved. That includes nasal (chronic sinusitis), eczema, plugged ears, headaches, dark circles around the eyes, nervous system involvement including hearing and vision disruptions, coughing SNORING, night sweats, and a long list of other small things, Appetite has increased.. he has grown from a size 5 youth to a size 10 youth. He has gained 17 pounds and grown 3 inches since we started DMSO/secretin and MSM over 6 months now, He has NORMAL digestion and elimination. Regular, normal bowel movements, PAIN FREE. He does not seem to have reflux or acid indigestion. HE HAS ENERGY THROUGHOUT THE DAY. He does not seem fatigued anymore and has the normal little boy rhythms that we like to see. His cheeks are pink again. Gone are the dark circles and pale complexion his blood tests showed anemia more than once over the years ) He is HAPPY and outgoing. He wants and has friends now. For his 7th birthday we had a party (first one ever) with 9 friends. He goes to play at his friends house alone and has them over to play after school. His language is improving... he suffers less and less from "brain fog". Phenols are also natural in the body as by products of normal neurological and hormonal metabolism. Without the detoxification pathway for phenols operating you get alot of buildup that translates into "static". This reduction of static alone accounts for most of James incredible leaps in development. He hears better, sees better and reacts to stimulus in a normal fashion. Only people familiar with autism will interpret the significance of this one, however, for James the improvement has been very, very dramatic. He has discontinued Occupational therapy at school. Actually he was discharged. In September he could not hold a pencil in his hand and is now writing at age level, using scissors like the other kids and no longer needs therapy! He is moving into his mainstream classroom more and more. He has library and PE with them and enjoys it very much! He is academically at the first grade level now. His language, especially expressive, has improved sooooo much. Remember he only had 10 or so words a year ago and now speaks sentences out loud. He still has a long way to go with articulation, but he is improving EVERY DAY!. Physically, he has lost a lot of water weight. He seemed to have an all over inflammatory condition which was not exactly only in his intestines. He has a rounded face and chubby, baby fat like arms and legs. Now, we can see (after an initial 2 week detox of lots of fluid) that his muscle tone has improved somewhat. This is important too since he had another condition called hypotonia on his upper body. His skin is gorgeous. He had allergic eczema rashes over most of his body. It is gone. Literally gone. Looking back I can see where the DMSO was critical to get his digestion healed. Looking forward I can see MSM being a supplement for the rest of his life. If there is such a thing as a sulphur deficiency and how amino acids are metabolized I can say that was what James had. He had so many sub-clinical errors in his health that wholly the only possible explanation is that he was not getting nourishment to his body. Since sulphur supports the digestive tract and the turnover of cells it would seem to reason that if the cycle of health would be adversely effected without sufficient amounts of the substance sulphur. Our next addition to the plan is pig duodenum (however you spell it) and 1 mcg. of melatonin nightly. I contacted you David after we experienced all of these benefits after a random search of the net for "Autism/MSM" to see if anyone else had noticed these benefits.....well imagine my surprise when I found your website about DMSO and chrone's disease. Thanks again. Just another note. While James is not "cured" of anything - the door now is wide open for a full recovery now that his body is well and he can benefit like never before from therapies available to him. We expect a full "recovery" of lost time from ill health. We never really bought into the fact that a child with a normal neurological workup could actually have a neurologically based, irreversible, incurable disorder without the world knowing the cause or offering a cure..... I never bought it for a single minute. See, James was well when he was born, he will be well and whole again. No question about it here.
Take care, I will be in touch!
Subject: Pig Duodenum, Sent: 5/5/20 11:53 AM
From: fryedj, firstname.lastname@example.org
To: David Gregg, email@example.com
Hello Mr. Gregg,
James is doing really well. We have started slowly with the Pig Duodenum - about a tsp. every 4/5 days. He has had alot of improvements so far - better language especially! We would like to dose as needed but are at a loss as to how to determine when he needs it. His bowels get touchy sometimes, however, we don't think it is too much of a problem!
Talk to you soon,
Summary update from Lynn Beebe, grandfather of the first autistic child to try dietary pig duodenum powder (which I sent to him).
Subject: postable email
Received: 8/30/01 6:53 AM
From: Lynn Beebe, firstname.lastname@example.org
To: David Gregg, email@example.com
Below you will see portions of some emails that I sent previously along with some notes and the last section is new today. You may post any or all of these if you wish. Lynn
Date: Saturday, June 17, 2000
You may recall I sent two emails to you on 5/1/00 and you were kind enough to send your old sample of pig duodenum. A four year old autistic grandchild is taking about a tablespoon per meal and his parents report more solid stools. No hard science here but they seem willing to continue as the one day they skipped the dose the stools became loose. You said you could check with your supplier to see if the product was still available. Please do that and advise me. Thank you very much for your help, Lynn Beebe (Grandpa).
Date: Sunday, June 18, 2000
My wife and I saw the boy yesterday. Usually we visit him every three or four weeks. There is always progress evident due to the good amount of ABA type attention he is getting. This time I saw more social interaction, more eye contact and a definite enjoyment (smiling and laughing) as he went down the slide with his sister as opposed to his usual subtle enjoyment sliding alone. I did suggest uping the dose but his parents are cautious....Lynn.
Over the past year our daughter managed to get four secretin infusions for her son. She stopped using the PD during that three month period. The infusions were beneficial but did not give the consistant gut function that using the PD provides. I have been searching for a test to determine if my grandson produces enough of his own secretin but no such test is available. It has finally occured to me that stool pH may be an indicator for the bicarbonate output of the pancreas and liver. I have sent some litmus paper to our daughter, range 0 to 13, and will let you know the results....Lynn.
Subject: porcine duodenum and stool pH
Date: Saturday, August 25, 2001
Our daughter was feeding her son one tablespoon of free-dried PD per meal when she started measuring stool pH. After getting pH 5 (using 0-13 litmus paper) for several days she increased his intake to 2 tablespoons per meal. The result was pH 6 to 7 the next day along with a jump in verbal activity. After a couple more days she increased to 3 tablespoons and the pH went to the 8 to 9 range. I told her to cut back and try to keep pH in the 7 range. So far it looks like the PD may be useful for controlling stool pH. I'm sure you already know that pancreatic enzyme activity is sensitive to pH and drops off rapidly with increased acidity in the duodenum. I think it would be interesting to test stool pH on your friends with Crohn's or any other GI problems to see if they might be candidates for PD. Apparently not all autistic kids have acid stools so they may not all benefit from PD......Lynn
Date: Sunday, August 26, 2001 3:15 PM
Just talked to the daughter on the phone and she is still very convinced she can control the stool pH with the duodenum. I have revised my ideas for people using synthetic secretin. I now suggest they first take pH measurements on stools for a few days. If the pH is in the acid range, they should give a tiny amount of secretin transdermally (thanks to David Gregg) about 60 to 90 minutes after every meal to get the stool pH neutral or slightly alkaline so that enzymes will function properly and that the gut will left alkaline. Since a kid's secretin producing cells are triggered by acid, it is silly to leave the gut acid inbetween meals and expect it to function properly when the stomach next empties. They can then take the balance of their daily amount of secretin left over from the every meal application and use it in one more application when the child goes to bed. Lynn
Date: Wednesday, August 29, 2001
In my notes to you I have focused on my grandson's gut function. It has been my belief that if we keep that function close to normal then his body stands the best chance of healing his mind and body. Thanks to the porcine duodenum you provided and our new found ability to judge his pancreas output using litmus paper to measure stool pH, we have a way to keep gut function normal. And while it is comforting to know that John's stomach acid is no longer trying to destroy his intestines, causing him pain, and decreasing his digestion and absorption of vital nutrients, it is also very pleasing to note his behavioral progress. He does much less stimming, has a larger vocabulary (a year ago had none, now one of his words is Granpa), is happier, plays and interacts with others, and has obviously improved eye contact. On my last visit, about two weeks ago, he approached me, took me by the hand and led me out on the back porch to play. I was really surprised when, without any prompting, he looked up into my eyes for over five seconds. We are expecting more rapid progress now that we have a way to keep his GI tract near normal. I should suggest that what we do may not be appropriate for all autistic children. Since our first objective is getting normal GI function, I think every parent should be testing stool pH to determine whether or not their child's pancreas and liver are dumping enough bicarbonate after every meal to neutralize the acid chyme coming from the stomach. If the stool pH is nearly neutral (6.8 to 7.3), then I see no reason to eat PD with meals. However, if the pH is 6 or less, supplimenting every meal with one tablespoon of the freeze-dried porcine duodenum may be a good starting point. The increase or decrease in amount of PD can be judged from the next day pH measurement. You can increase the PD until the pH is about 7.
If you have any trouble finding pH paper, as I did, you can get pH strips from McMaster Carr (732)-329-3772 or www.mcmaster.com. Part number 8707T11 tests pH from 0 - 13 and costs $8.89. I ordered from their web site and they shipped the next day. Total cost was about $12.50 with shipping.
Many parents are not familiar with the secretin cycle and enzyme function and the pH system. I should write a study guide to give people a basic understanding. I'll give a try later this week. While I think it would be great if everyone with GI problems, whether Crohn's or UC or whatever, would do the stool pH testing, I should mention that people with cystic fibrosis who are pancreatic insufficient should not use the PD to stimulate the pancreas because the PD may also stimulate the pancreas to excrete enzymes which won't leave the pancreas if they are totally unable to produce the bicarbonate that flushes out the enzymes.
Thank you again David for all your help. I'll keep in touch,
I would appreciate additional email feedback: firstname.lastname@example.org
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