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Janie
03-01-2001, 09:37 PM
Hello, we are new members of the site looking for advice regarding our autistic five year old son's constipation complaint. He is presently on a course of Lactulose, Senacot and Picolax, but we are finding it increasingly difficult to get him to take the Sena or Picolax due to the foul taste and odour. We cannot seem to find anything to disguise this. Can anyone suggest how we might overcome this problem ?

Hayden has been having enemas, administered under sedation, which cause him a lot of distress and only temporarily alleviate the problem, the constant soiling and stomach pains return and seem to get worse. Hayden is currently awaiting an exploratory biopsy.

This depressing situation has now gone on for three years. We would love to introduce the fibre and vegetables into Hayden's diet that the Doctors suggest, but Hayden is a very fussy eater.

We would be interested to hear from anyone with similar experiences and grateful for their advice.

Thanks. David and Janie.

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MaryEvelyn
03-01-2001, 09:49 PM
I am sorry that i have no advice for you about your problem, but I had to coment on your name as it is the same as my sister spelling and all. I know you have tried everything but how about homemade applesauce if you put it in the blender you can keep the skins on and that would add fiber. Sorry not much help but I will ask around.

------------------
Mary Jones
mother of Kyle & Rita

firstdonoharm2
03-11-2001, 07:09 AM
Hi Janie - Like Hayden, my daughter Rachel suffered horribly from constipation. We tried everything from more fiber/water to RX. Finally, I read a book by Karyn Seroussi that explained what has been happening to our children, as well as provided the answer to Rachel's problem. Her husband is a research chemist for Johnson & Johnson Ortho Diagnostics Division and they corroborated the research of Reichelt, Pangborne and Shattock that identified "opiod peptides" in autistic patients' urine. Some of these opiod peptides are produced from the incomplete digestion of milk and gluten foods and they are very potent. They are a form of morphine, and besides being very constipating, they cause neurological symptoms that manifest as autism, as well as impair immune function. By implementing a strict gluten-free/casein-free diet, no milk/milk-products or wheat/rye/barley/oat products, my daughter is no longer constipated, makes great eye contact, has made remarkable progress behaviorially and cognitively and, has better sleeping habits! I strongly suggest Seroussi's book and/or Lisa Lewis' book "Special Diets for Special Kids" or go to www.gfcfdiet.com (http://www.gfcfdiet.com) to understand how to correctly implement this GF/CF diet. Also, we saw the most improvement in my daughter once we put her on a digestive peptide enzyme after having been on the GF/CF diet for about a month. These help breakdown any casein or gluten opiod peptides hanging around in the body as well as any hidden sources she may ingest. There are two such supplemental enzymes available in the U.S. - SerenAid and EnZymAid. I implemented the diet slowly, so as to help reduce the withdrawal symptoms Rachel was sure to go through.

Normally, our bodies produce an enzyme called DPPIV - dipeptidyl peptidase IV that breaks down these opiod peptides. When this enzyme has been disabled and the intestines are damaged (leaky gut) these opiods get into the central nervous system. I cannot impress upon you enough the importance of using the diet if Hayden is the type that self-limits his diet to milk products and wheat products.

Though my daughter has always loved pumpkin and squash, I make her rice bread using a banana bread recipe (no yeast) and mix mashed pumpkin or zucchini with it to make it more nutritious. I add lots of pumpkin pie spice to it in lieu of a sweetner and she really likes it. Maybe this might be a way for you to get some veggies in Hayden's diet.

It may be that some of those children who exhibit autistic symptoms from birth have a defective gene that doesn't allow for the production of this enzyme. For those children who, like mine, respond to this diet, and who also develop normally their first year and then regress, the enzyme has been disabled by some "environmental assault." I believe that my daughter was injured by the thimerosal (mercury) in her vaccines. "Autism: A Unique Form of Mercury Poisoning" by Bernard et al can be found at www.autism.com/ari/ (http://www.autism.com/ari/) and is a very well documented and convincing hypothesis that explains one of the major causes for the increase of autism over the past 60 years. Of note, mercury cleaves DPPIV, as well as contributes to a leaky gut.

I hope I haven't gone on too long. It is just that I can't bear the thought of another child suffering like my Rachel and I will try to offer any insight I have to try to help end Hayden's suffering.

Janie, read these sources... cry... get angry... and then pray for the strength of Wakefield, Singh, Shattock, Shaw, Waring, Rimland, Loe-Fisher, Burton, and other researchers and advocates of our precious children, to prevail.

Janie
03-13-2001, 09:31 PM
Thanks to Mary and 'firstdonoharm' for their posts.

We have just returned home after four days of hell at the local hospital trying to get Hayden to take various sedatives in order for an enema to take place. Could we disguise them!! We found that by mixing them with canned drinks we could eventually get Hayden to take them, but he still noticed! and as usual Hayden would become extremely hyperactive, aggressive or emotional while fighting the effects of the drug. The hospital staff were amazed by his resilience to drugs which were known to knock out older kids.

During his stay Hayden had three enemas which we hope have totally evacuated him and have returned home to follow a seven day course of 'Movicol', which is Polythylene Glycol based, similar to 'Miralax' in the United States? Next week we have an appointment with the consultant to review Haydens progress.

While in hospital, we had to reassure the staff that Hayden did not think he was being poisoned, as he refused every meal that they offered him! Hayden was just being his picky self and mum and dad had to do the food run.

Thanks for the sites you have recommended, we will go have a look see. One final point Hayden has been tested for gluten intolerance, this came up negative. We have looked into the dietary side of the issue, but due the limited range of foods Hayden will eat, we have been advised by his Dietician not to pursue any particular regime. Although we know of others through a local Autistic Group @ www.bigfoot.com/~osca, (http://www.bigfoot.com/~osca,) who are having great success with a gluten free diet.

Thanks again for the support.

Janie
03-13-2001, 09:42 PM
Sorry to anyone trying the link on the earlier post. Due to a typing error, try http://www.bigfoot.com/~osca ...(no comma needed).

dylingtolearn
03-14-2001, 01:08 AM
Hello. I just joined this list and I wanted to tell you I empathize completely with the issue you have to deal with.

As a nurse myself, I am curious (my specialty is not in pediatrics) how the number of enemas your son is getting per visit is affecting the natural flora in your son's intestinal tract. I'm just curious. I have friends that have "NT" kids that deal with the same issue as yourself.

Thanks

------------------
Rosie
Mom to Lisa (9)
Michael (6-PDDNOS)
Nicole (4)
Wife to Jim

[This message has been edited by dylingtolearn (edited 03-14-2001).]

firstdonoharm2
03-14-2001, 02:15 PM
Hi Janie, it's me again. Read your reply and would encourage you to check out www.autismdiet.co.uk (http://www.autismdiet.co.uk)

It is the site for a non-profit group based in the U.K. that can give you more information about the dietary role in autism. This diet is sound, objective, verifiable science, not some grass-roots home remedy for autism. Our children have definite metabolic problems and I would strongly urge you to to consult with a physician and a dietician who are current with recent research in this area.

There is a lab test you can have done to see if your child would benefit from the kind of diet (GF/CF) I'm advocating. A urinalysis (all it takes in a small urine sample) that identifies and quantifies opiod peptides would be indispensible to your physician in the diagnosis of a possible digestive enzyme disorder as well as identifying a leaky gut condition in your son. AAL Reference Lzboratories (714-972-9979 or 800-522-2611 in the U.S.) will know of a lab and physician in the U.K. that can perform and interpret this test for you.

firstdonoharm2
03-14-2001, 02:38 PM
P.S. An allergy test to gluten or milk (whether positive or negative) is meaningless in diagnosing this digestive problem. It is not based on an allergy. Also, our children with this problem are VERY PICKY EATERS. Does your son prefer milk products? Wheat (gluten) is not the only culprit here.

If your son has these opiod peptides circulating in his system, they are very potent (10-30 times more potent molecule for molecule than morphine). It would be interesting to find out if his high tolerance and reaction to sedatives is affected by morphine.

I just had to respond...I won't bother you anymore on this issue. Take care.





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