Posted 27 October 2004 - 02:58 PM
Phenolic compounds from plant sources offer significant nutritive value as antioxidants and anticarcinogenics, and it is hoped, as our informal field-testing has indicated, that No-Fenol will allow children and adults to ingest fruits and vegetables without the negative effects often observed. After all, these kids deserve to be able to eat strawberries, blueberries, and bananas as much as any other child.
Posted 27 October 2004 - 03:03 PM
excerpts and reordering--nothing below here is from me, just the article
Why Use Epsom Salts
Dr Rosemary Waring found that most people with autism conditions have a deficiency in a key detoxification pathway. The pathway involves using sulfur in the form of sulfate (known as sulfation). The enzyme involved is phenol sulfur-transferase (PST), but the problem is thought to hinge on an inadequate supply of usable sulfate ions, not the metabolic enzyme itself.
Dr Waring found that most children on the autism spectrum are very low in sulfate and may be as low as 15 percent of the amount in neurologically typical people. People with low or no ability to convert compounds to sulfate have problems handling environmental chemicals, some medications, and even some chemicals produced within the body. They include people with other conditions such as Alzheimerâ€™s disease, Parkinsonâ€™s disease, rheumatoid arthritis, and chemical sensitivities.
The PST sulfation pathway is necessary for the breakdown and removal of certain toxins in the body. This includes the processing of a type of chemical called a phenol. Phenols are a regular and necessary part of life. All foods contain some phenolic compounds. However, some foods have a much higher content than others do. If the sulfation pathway is not functioning well, a person may not be able to process out the phenolic compounds as fast as they consume them. There is a cumulative effect. When the phenols start backing up in the system, it can cause a myriad of negative reactions. Symptoms of phenol intolerance include night waking, night sweats, irritability, eczema, and other skin conditions. The symptoms of phenol intolerance and yeast may be very similar because they both involve the body trying to deal with toxins.
This detoxification pathway processes other phenolic compounds including salicylates (salicylates are a subset of phenols), artificial food colorings, artificial flavorings, and some preservatives. Besides requiring PST, research has found the salicylates further suppress the activity of any PST enzyme present, making matters worse. Food dyes also have been shown to inhibit the PST enzyme.
You can unclog this â€˜bottleneckâ€™ in one of two ways. One is reducing the amount of phenols and toxins entering the body. This is the basis of the Feingold Program or diet. The Feingold Program removes the hard-to-process artificial colorings, flavorings, and three preservatives. It also removes the most problematic of the salicylate foods at the beginning of the program. Later in the program, you may be able to add these salicylate foods back after testing them one at a time. The foods targeted by the Feingold Program and their effects on hyperactivity in children have been extensively studied. Eliminating these chemicals has been effectively helping many children with all sorts of behavior problems for many years, although the reasons why are just now beginning to be understood.
There is an abundance of studies in the references that specifically show that eliminating these types of chemicals significantly improve neurological problems in children.
note: look in the Research section at the top of the page at the above link. This site contains information on the possible symptoms from various food and environmental chemicals also.
A literature review by Kidd (2000) concludes that although the exact cause of attention deficit conditions is unknown, the current consensus is that genetics plays a role. Other major contributors include adverse responses to food additives, intolerances to foods, sensitivities to environmental chemicals, nutrient deficiencies, and exposures to neurodevelopmental toxins such as heavy metals. This sounds exactly like the factors contributing to autism, migraines, sensory integration issues and other related conditions.
High phenolic foods, chemical additives, and enzymes
Phenols and salicylates do not occur in the same intensity in all foods. Those parents on the Feingold diet point out some studies rank foods by the quantity of phenols present in a food as very low, low, medium, high, and very high. These are not absolute values or correspond with exact toxicities or reactions to the foods. Rather it is included only as a guide. The Feingold literature also notes that salicylates are cumulative in the body, and may only be processed out at a certain rate. So, if you consume more than the body can process out, you get a reaction.
Regarding the other chemicals, even small amounts of coloring or other chemicals may cause a reaction, which indicates some sort of pharmacological effect as well. For people who are sensitive to phenols, a strong broad-spectrum enzyme product may help somewhat with phenolic foods. Several parents found they could give low quantities of some phenols, but needed to keep track of the total phenol load for the day, or week. Enzymes may be helping some by breaking down a wide array of foods, or by releasing more sulfur, magnesium, and molybdenum which are helpful in processing phenols.
In April 2002, No-Fenol became available. It is a very unique enzyme mixture just for assisting with the digestion of highly phenolic foods, including fruits, chemicals, and artificial additives. No-Fenol performed very well in months of preliminary tests with phenolic-sensitive children. Since its release, it continues to give excellent results with these foods.
The exact reason No-Fenol helps is not precisely understood. The phenol metabolism, sulfation, and detoxification issues are rather complex. It may not be due so much to the presence of phenols as to the specific structure of these phenols. The research literature indicates that some phenolic compounds are modified by the addition of carbohydrate groups to their structures, which may inhibit their crossing into cells and being metabolized properly. A current hypothesis for why No-Fenol helps may be because the enzymes in this product are able to remove certain carbohydrate groups from the phenols, or otherwise modify their structure, thus allowing normal processing by the detoxification pathways.
see The No-Fenol File
Since fruit-derived enzymes may contribute some phenols into the system, products without the fruit-derived proteases (bromelain, papain, actinidin) may help those concerned about phenols. Enzymedica is one of several companies that makes enzyme products without fruit-derived enzymes or fillers.
Many parents giving these enzymes have said how wonderful it is to be able to give even a low amount of phenols again. Just being able to add foods containing a little bit of fruit greatly expands their childâ€™s menu. Enzymes may help protect against hidden sources of the unwanted phenol compounds.
Sometimes a food may appear to give a 'phenolic' or unwanted reaction. It may be because the food actually contains a phenolic-based preservative. At times this turns out to be the case with dairy. Vitamin A palmitate is often added to low-fat or skim milks. The palmitate may be preserved with a phenolic compound. When people switch to a whole milk or milk product without this preservative (or artifical colorings/flavorings) they no longer have a problem with dairy. The same may be true of commercial breads. Often the shortening or pan sprays used in baked goods contain artificial preservatives that are the cause of the problem and not the grains in themselves. This may be the same with other foods as well.
The second method of enhancing the detoxification process is to supply more sulfate. This increases the amount of toxins processed out. Sulfate ions may not be absorbed well from the gut, so simply giving more sulfur directly by swallowing supplements may not produce satisfactory results. Some people have seen improvements by supplementing with the sulfur-containing amino acids cysteine and taurine, or MSM (methysulfonylmethane), or by using one of the many commercially available MSM creams. However, others have not found this tolerable. This may be because their body is unable to convert the sulfur to the needed sulfate form.
Most people do see improvement with Epsom salts because the form of sulfur in the Epsom salts is already sulfate and readily available to the body.
What are Epsom salts and how do they work?
Epsom salts are magnesium sulfate. Salts are just molecules that form because the parts have opposite electrical charges that bind together. Magnesium has a positive charge. Sulfate has a negative charge, and performs all sorts of unique biological functions. The two elements dissociate in solution (English translation: break apart and separate in liquid). Epsom salts are available at most local grocers or health food stores, or inexpensively in bulk at agricultural supply stores.
The magnesium and sulfate in the salts are absorbed into the body through the skin. Because the sulfur is already in the sulfate form, it does not need to be converted like other forms of sulfur do. Sulfate is thought to circulate in the body up to about nine hours. Any Epsom salts left on the skin may continue to be absorbed as long as it is still on the skin, offering continuous â€˜timed-releasedâ€™ input into the bloodstream â€“ like medications given through skin patches. Many people on a typical â€˜modernâ€™ processed diet are very deficient in magnesium as well, which Epsom salts also supply in a highly available form. Main effects of insufficient magnesium are hyperness, irritability, anxiety, and muscle twitching or spasms. So the salts may provide two-way assistance.
How to give Epsom salts
Here are several methods for giving Epsom salts. The ratio is not exact, just what seems to get the salts dissolved and on the skin.
Epsom salt baths â€“ Most people use about one to two cups per tub. Dissolve the salts in hot water first and then fill the tub to about waist deep, as warm as possible. The amount of salts you may find works best will depend on the individual tolerance, the temperature of the water, and the size of the tub. The warmer the water and larger the tub, the more salts will dissolve. If you see negative reactions, such as irritability or hyperactivity, then decrease the amount of salts. You may need to start with as little as one tablespoon of salts, and work up gradually. Epsom salts baths are very calming for most people. This works well just before bedtime. Most guides say to soak for about 20 minutes or more. It is okay to let the salts dry on the skin. You may notice a dry clear-white powder. If it is too itchy or irritating, just rinse it off. If the skin feels too dry, use lotion or oils to moisturize. Diarrhea or loose stools may result if children drink the bath water.
Footbath â€“ Mix one part salts to two parts water (or more so the salts dissolve) and let the person soak their feet in it. My boys would soak their feet about 30 minutes while they did reading or homework.
Epsom salt oil â€“ Neither of my sons nor I liked the salty film left on the skin after a bath (felt itchy). I mixed some coconut oil in with the salts and water. Actually, it is more oil than water. Three tablespoons water plus four tablespoons salts plus 12 tablespoons coconut oil. The coconut oil is good for the skin anyway and it seems to counter the drying effect of the salts. I found that just mixing the salts and oil did not dissolve the salts, so I needed to add some water. I apply this liberally on the skin and it soaks in plus leaves the skin smooth and soft. Adjust the quantity of salts to your liking.
Posted 27 October 2004 - 03:19 PM
Posted 27 October 2004 - 06:03 PM
You are an inspration in finding information.
That article was facinating, I had just bought some epsom salts last week and I wondered why at the time!
I had this vague feeling that it was to do the Sandra Cabot gallbladder cleanse! which I chickened out of at the last minute!
I will try the salt bath on my cherubs in the coming days and let you know what happens.
We are coming up to Daylight savings, which means they stay up later all hyped because it's lighter and wake up earlier
So if the salts calm them thats a bonus.
Posted 27 October 2004 - 07:08 PM
This is why I love this site. Jennifer makes a comment on enzymes for gluten and look where it leads! I have epsom salts somewhere and now I want to finally try them out too. Chemar has recommended them for some time now for general detox.
I posted about the enzyme for casein/gluten on the Braintalk gluten site that I visit for gluten questions--I didn't even mention the no-fenol someone posted back that they did no-fenol for their son with great success. They mentioned Feingold and fruits. You might wish to pop in and ask her for more information--she obviously did her research. Definitely sounds worth investigating.
Posted 27 October 2004 - 08:22 PM
Today I am feeling totally fed up with all of this restricted food and stuff. My 12 year old is normally really good, but last night, he blew his stack over the whole tablet/diet stuff! He said is just sick of it! He said he opens his lunch box and feels abnormal, especially as all his friends have great stuff, and he has rice crackers.
Please post your response once you have tried these!
Posted 27 October 2004 - 10:37 PM
Anyway, here is the link - it is about methylation
Enzymestuff - methylation
(if the link doesn't work use the search part of the enzymestuff website and put in methylation)
It explained a littlebit more about salicylates/gluten/casien, and maybe how they are all part of a bigger picture, and of course, Pfeiffer's methylation came into play as part of all this.
I'm keen to hear opinions on this article. Could simply giving certain supplements and taking certain enzymes eliminate the need for the restrictive diets???????
Posted 28 October 2004 - 01:09 AM
I got somethings from that same site on the enzymes for gluten/casein, but moved on. It is just so hard to make the time to do all this research, so thanks for finding this article.
Oh my that is a nice explanation--though I need time to look at it thoroughly, but I am trying to dissect it to understand it, and because I know not everyone will read it!
First does anyone know what TMG is? I keep reading about it.
---So, let's see, to bring up the methyl you reduce homocysteines. (It will be interesting to see if Jennifer's and my test results show undermethylated too--this seems to be so common).
"Where can homocysteine get some methyl groups so it can transform into methionine? One pathway is from folate+B12." [I knew that b12/folate reduced homocysteines. Did you know that 25% of people with gluten sensitivities are deficient in b12? (from a study on the braintalk gluten board). ]
"An alternate way to keep homocysteine from building up is with B6/magnesium. This is a transsulfation pathway that converts homocysteine to cysteine. " boy these supplements sound familiar.
~ Homocysteine + B6/magnesium = cysteine
---And that picture also talks about *sulfates* that the other excerpt I had posted mentioned said was needed to deal properly with the fruits. I have been focused on glutathione for metal detox, but these sulfates sound key, and this has more info: I never knew that sulfate issues and histamines were related (remembering that histamines relates to the under/over methylated) I need to look into molybdenum now.
"One step is adding molybdenum and continuing on to convert toxic sulfite molecules to really helpful sulfate molecules. The sulfate then goes throughout the body doing both wonderful building up work, and detoxing harmful chemicals (such as heavy metals and phenols)."
"Some people who have trouble converting sulfur to sulfate (PST issue), and who have a sensitivity to certain foods and chemicals because of this, often times develop a high histamine level."
----More on Epsom salts--and by the way, a braintalk poster mentions Pepcid AC.
"Benadryl and Pepcid AC are histamine blockers. This might explain why Pepcid AC is so effective on some kids. A few parents have reported that a histamine reaction with certain foods did not happen when No-Fenol was given with those foods. MSM or Epsom salts also supply sulfur to the system and may be helpful. Some people cannot convert the sulfur in MSM to the needed sulfate form although other people can. Epsom salts supply sulfur in the sulfate form directly. Taking MSM or Epsom salts may alleviate a histamine reaction."
---Uh oh, here is where the pyroluria treatment may conflict, since pyroluria treatment involves B6 and niacinamide. Maybe once we start the enzymes, I will try lowering the B6. Maybe methionine is okay if from foods?
"Q: What amount of B6 is considered "high"?
A: From the site http://www.methylmagic.com/faq.html
Some supplements have lots of B6 (e.g. 100mg) and the author usually aims for between 20 and 50mg per day of B6. Excess niacin (B3) is metabolized by methylation and thus uses up methyl groups. Also aim for 50 mg or less. These values are likely for an adult so a child needs much less.
According to Pfeiffer, "Actually excess niacin (B3) is metabolized by methylation and thus uses up methyl groups." So if you are an over-methylator, meaning you have extra, then B3 is good because it uses them up, but if you are an under-methylator, meaning deficient, then giving extra B3 is bad because it drains an already poor supply. "
Other commonly suggested supplements include NAC (cysteine), glutathione, molybdenum, sulfur/sulfate, melatonin, and serotonin. If you can get the methylation working properly, you may not need to add in all these components separately. The melatonin and serotonin come from SAMe function. Too much B6 may deplete this. Having a good source of methyl groups plus methionine in the diet is a good way to improve serotonin and melatonin supplies.
---Please remember my post (from a friend) re excess methionine and yeast interacting to be toxic. Unfortunately there are complicating factors everywhere.
"extra methionine is probably unnecessary as long as you have good protein sources in your diet and as long as your digestion is good)."
---I don't understand it (help from someone?) but this scares me:
"SAM has also been used by itself as a nutritional supplement, but look at the pathway - unless you have all the necessary ingredients to optimize the efficiency of the whole pathway (nutrients that are in Homocysteine Redux), SAM can metabolize to the toxic homocysteine in just two more metabolic steps!"
--More on enzymes...and taurine (for those of us doing mag taurate)
"This explains why some people do so much better on enzymes as well. Enzymes are supplying better nutrition and correcting multiple pathway hurdles throughout the body all at the same time. Many of the treatments and supplements recommended to those with autism conditions are targeted to one pathway at a time, or aim to correct a pathway by supplying all the needed precursors individually.
One technique of giving high doses of taurine (as done by Dr. Bradstreet) has an effect of improving digestion. Taurine is needed in bile productionâ€¦bile improves fat digestion and digestion in general. If you take enzymes to do this digestion, then you are more directly accomplishing the same thing as the taurine supplementation. "
--homocysteines are important for adults.
"The New England Journal of Medicine reported that homocysteine was THE strongest modifiable predictor of overall mortality among patients with coronary artery disease (NEJM 1997;337:230-236). "
Homocysteine nutrients, which include the B vitamins, are related to depression in several ways (Fava, M et al., Folate, B-12, and homocysteine in major depressive disorder. Am J Psy 1997;154:426-428). The methyl group metabolism provided for by the pathway of homocysteine (correctly-functioning) is necessary for the production of depression-relieving neurotransmitters such as serotonin and dopamine. The B vitamins are also crucial in the direct synthesis of the brain neurotransmitters. Aside from the fact that they are needed (especially B-6, B-12 and folate) for the homocysteine pathway to provide methylation, they are essential to the pathway of these neurotransmitters (J Affect Disord. 1986;10:9-13; Psychosomatics. 1980;21:926-929).
Signing off now, thanks again for finding this. Now we just need to tie it in with yeast and magnesium and B6, as you mentioned before.
Posted 28 October 2004 - 01:59 AM
TMG = trimethylglycine
The methylation issue is really heavy going wasn't it!
If the histamine connection is an issue for Tourette's (which those who have been to Pfeiffer and had this testing done, it seems to be the case - and in Bill Walsh's info on this web site that talks about neurological conditions, he suggests those with Tourettes suffer from undermethylation), then the whole amine/salicylate/artificial stuff connection comes together after reading this web site.
Of course, it is only a hypothesis, but interesting anyway.
Posted 28 October 2004 - 08:59 AM
She discusses using DMG which benefits about half of the ADS children who take it. However, she warns that it may cause hyperactivity which may be controlled by adding folic acid.
Then I quote from her book:
"If the hyperactivity persists even with the folic acid, then the DMG should be discontinued, as approximately 15% of children are reported to be intolerant of methylating agents such as DMG and TMG (the "undermethylators.") I have heard some mother's state that TMG does not cause the hyperactivity that DMG does; TMG is DMG with one more methyl group, increasing serotonin through a precursor called SAM(e), an enzyme important in acetylcholine synthesis. However other mothers report that when they changed from DMG to TMG they noticed hyperactivity and returned to the DMG without any problem. Children's chemistries are so unique that sometimes trial and error with these non-toxic substances is the only was to find out whether they are beneficial. Both DMG and TMG have a tremendous safety record."
Posted 28 October 2004 - 09:08 AM
Posted 28 October 2004 - 11:06 AM
Okay, now I feel confused. I reread the site and didn't understand how the enzymes helped. I got how certain supplements could help with methylation (e.g. b12/folate, and B6/mag), but didn't understand the enzymes themselves in that pathway.
Can anyone who read the article help here with the role of enzymes? Or is it just that the methylation issues cause deficiencies in certain enzymes--but then would treating the methylation change the enzyme need over time??
Also, look what Reported Side Effects for the Gluten/Casein ensyme from Houston Naturals, and the impact of B6--oh dear, I worry about our pyroluria treatment here... The pyroluria treatment conflicts with a lot (Omega 3 vs 6, and B6--which is also supposed to feed yeast!, plus the potential need for manganese supps, not good for TS in general).
In children sensitive to exorphin peptides, initial use of AFP Peptizydeâ„¢ may result in the so-called "peptide withdrawal syndrome", as the food-derived peptides are decreased. This may present as hyperactivity, irritability, increased aggression, tantrums, etc. for a period of several days to as long as a month. In most cases, this syndrome is resolved when dosing of 1 capsule per meal is obtained for a period of several days. Most parents report the cessation of negative behaviors after about 3 weeks. Often, the syndrome can be minimized by starting with low doses (Â¼ - Â½ capsule) and working up to 1 capsule per meal within about 2 weeks. If behavior during this initial dosing becomes a concern, stop the enzyme supplementation for a period of 2 weeks (or until child returns to former behavior), then re-introduce AFP Peptizydeâ„¢ at a much reduced dose and increase dosing at a much slower rate than previously used. Many parents also reported that decreasing or discontinuing certain vitamin supplements containing high amounts of B6 or P5P would alleviate much of the hyperactivity.
Posted 28 October 2004 - 09:23 PM
I am going to try and summarise the web site info, and how I imagine this relates to what we are talking about. This is of course my interpretation of someone elses interpretation - so of course, here is the disclaimer: what would I know anyway????
Methylation is the process of "adding" methyls so numerous body reactions can start. (like activating an enzyme etc). This includes turning on "detox" reactions that detox the body of chemicals including phenols.
(Just a note, phenols are a broad group of naturally occuring substances - it includes salicylates and amine amongst others)
Therefore, if you are phenol sensitive, if you increase your methylation then your body can process more phenols and you should be able to eat fruit/phenols without any problem. This of course, sounds fine in theory, but does it work in practice - who knows?
How does histamine fit into the methylation picture?
One way for histamine to be deactivated is to recieve methyl groups from the SAMe.
When someone is undermetylated there is low SAMe and histamine levels will be higher because of a lack of methyl groups to deactivate them.
Where does histamine come from?
1) Bacterial overgrowth can increase histamine levels. (as per article)
2) From food. It says that reactions to histamine can look like allergies but are not true allergies. Therefore you can see a histamine reaction which is just too high levels of histamine, not because an antigen caused an immune reaction to something.
Histamine come in 2 forms
1) high amine foods, like fish, cheese, yogourt, dried, cured smiked or processed meats, tomatoes and a few other vegies, some fruit, expecially banana's, chocolate, vinegar, soy sauce, vegemite soup mixes sauces and gravies.
Some other foodscause it to be released within the body. These include: additives, raw egg whites, shell fish, strawberries, citris fruits, pineapple, and some of the above foods
(I has trouble following this, but failsafe explains amines better)
There are some other problem areas, that is benzoates, food colours, nitrates and sulphites and salicylates that affect the bodies ability to break down histamine.
So how does fiengold and failsafe fit into the undermethylation picture?
If someone has low methylation then you may have high histamine levels and a problem eliminating the additional histamine from foods.
How to lower histamine levels?
1) Take antihistamines (not sure if this helps, my kids always go crazy on demazin etc)
2) Take vitamin c - and lots of it. Magnesium also helps with histamine.
Take antioxidants, free radicals promote histamine release.
3) Another main mechanism of lowering histamine is by an enzyme produced by the gut mucosa. If you have "gut problems" like alot of TS kids do, then you will have less of this enzyme to deal with the histamine.
Inability to get rid of too mcuh histamine would make you reactive to many foods.
Another way to lower histamine depends on where in the SAMe cycle you are having problems, it it is in the transsulfication pathway, epsom salt baths help increase the bodies levels of sulphur, and help with the detox process.
Another problem to consider in this area is how mercury disrupts the methylation process.
Mecury is highly attracted to sulphur. Mercury ties up the sulphur compounds in the doby. Therefore the sulphur reactions will be faulty and it will be hard to fix unless you remove the mercury. The article explains this more.
Now here is my interpretation of how this fits: (remember it is a laypersons thoughts)
Most kids on the ASD have metal issues. Can't properly process them - this is probably genetic, and then our envirnment is so much more toxic than any in the past. These kids are exposed to so much more. (Walsh'e metallation?? theory)
Toxic metals cause gut problems - we have heard that before.
Due to heavy metals and gut problems, like yeasts and microbial imbalances, we have other toxic problems from the overgrowth. Yeast and mercury seem to go together as well.
Now, we learn about methylation. With heavy metal and gut problems, the methylation will not work so well. Some of the detox pathways in our bodies do not work so well as they cannot be activated. We therefore cannot deal with all the toxicities in our bodies.
Some people find that if they remove the phenol groups, the symptoms go away. This would seem that it is because we are reducing the burden on the body, and then it can deal with the other things.
How do true allergies fit this picture - when we ingest things that our body does not agree with, we release histamine and/or continue to damage our gut linings/cause more microbial imbalances etc.
If we have so much histamine and our bodies cannot detox it, we will have symptoms like stuffy noses/watery eyes/general histamine reactions. In ts could such reactions be tics???
Well, who knows. I guess those being treated at the pfieffer clinic would see a dramatic decrease in tics when methylation is corrected, but then pfieffer does not like to treat tics, and they say they have little success with treating them.
It is sooooo complicated.
Does no phenol work to reduce this burden on the body and still allow kids to eat normal foods (not artificial stuff as it ways no fenol does not help with these)? It would be great if it did. Can't wait to hear other experience using it.....
Posted 28 October 2004 - 11:08 PM
I read the same article, and you got much more out of it. I suspect this is one I will read and reread. Plus reread your explanation a few times. Somehow I missed the yeast connection.
I think that this is just PART of the issue, and that is why Pfeiffer says they don't have much success.
There are lucky folks like Jeff for whom removing salicylates and artif. ingredients completely erase the symptoms. I have this feeling that the methylation treatment might lower the sensitivities of such people. I still know that glutathione is a factor, and many of our kids are low in it. That detoxes metals--if you read the Pfeiffer site, the antioxidants are a big part of reducing oxidative stress and not only lowering metals, but keeping them from accumulating again.
From my visit, Pfeiffer did not deal with:
--General food sensitivities--anecdotally speaking, that is a big issue here.
--TV/computer exposure--even if this is secondary (and hopefully not permanent), it is very real for many of our kids. Maybe this is more unique to tic syndromes than other ASD disorders. Just think of those who ONLY have photosensitive epilepsy.
--Pfeifer said nothing to me about artificial ingredients. My DAN doctor didn't see the need to eliminate them either. If someone else had Pfeiffer recommend this, then let me know. I will know more when they give me the treatment plan.
My point is that I think that the tic syndromes are complex, and that Pfeiffer's approach only addresses a subset of the conditions contributing to it. To their credit, I absolutely think they are at the forefront of the area that they focus on, and I strongly suspect that their program addresses a key element--not just of ASD's, but overlapping into our kid's issues. We have at least 4 of us now going through their program and we will find out more from this. Just as so many of us gradually tried foods, or no screens, or no artifiicial colors--we are just earlier on that path.
After reading so much about autism and how you really need to start as early as possible to reverse things, I always feel we also may have a timeclock. I don't know if this is true, but I am acting on that premise. Unfortunately, when I I 'solved' my son's issue so quickly when he turned 8, I did nothing else for 2 years! It was only when I realized that the 'no CRT' restriction that was so easy in grade school would be a nightmare in middle school that I searched and found this site. (Ironically, it hasn't been an issue in middle school--the diet is a bigger one!)
Anyway, like you and others here, the more we understand, the more we can work the contradictions and the proper ordering. None of us really want to experiment on our own kids (deprivation is different from supplementation in the physical risks).
Posted 29 October 2004 - 06:30 AM
that was the most fascinating discussion.
Its going to take me a while to get my head around it, imagine if between the lot of us on lattitudes, we discovered the "cure" for TS.
With no research "funding" needed!
How do you get tested for methylation?
Claire, I know you've posted about pyroluria, but could you just give another quick rundown on what it is.
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