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momaw

Need a salycilate/phenol primer

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Hello,

My 12 year old daughter has had a tic disorder for two years now, which has greatly improved with dietary changes (identifying allergy foods, eliminating gluten and dairy etc., cooking only whole, clean, basic foods all from scratch). She has gone from 7 concurrently running tics to one, and during waning times, none at all. During waxing times, I still try to find the additional pieces to the tic puzzle. We have tried LOTS of supplements, but she is very sensitive and supplements seem to make her tic more, and she always seems to do best without them.

Lately I have been exploring the salycilate/phenol connection more, which initially (one month trial) seems extrememly promising. Her tics do seem possibly connected to foods high in these compounds. It is sooooo exciting to find something that might be in our control. The difficulty is that the poor kid already has such a limited diet, and foods high in these compounds are so nutritious, that I want to find out more about how to clear the "pathways" better so that she can eat some of these foods.

I have tried to read the posts that address this issue, but I feel I am getting bits and pieces. Would someone take the time to give me a little primer on how the body is physically reacting, what the terms are so that I can do more research, and what people have found that help them be able to tolerate more of the foods high in salicylates/phenols? What Supplements? Epsom Salt Baths? What else?

Thanks so much.

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Hello,

My 12 year old daughter has had a tic disorder for two years now, which has greatly improved with dietary changes (identifying allergy foods, eliminating gluten and dairy etc., cooking only whole, clean, basic foods all from scratch). She has gone from 7 concurrently running tics to one, and during waning times, none at all. During waxing times, I still try to find the additional pieces to the tic puzzle. We have tried LOTS of supplements, but she is very sensitive and supplements seem to make her tic more, and she always seems to do best without them.

Lately I have been exploring the salycilate/phenol connection more, which initially (one month trial) seems extrememly promising. Her tics do seem possibly connected to foods high in these compounds. It is sooooo exciting to find something that might be in our control. The difficulty is that the poor kid already has such a limited diet, and foods high in these compounds are so nutritious, that I want to find out more about how to clear the "pathways" better so that she can eat some of these foods.

I have tried to read the posts that address this issue, but I feel I am getting bits and pieces. Would someone take the time to give me a little primer on how the body is physically reacting, what the terms are so that I can do more research, and what people have found that help them be able to tolerate more of the foods high in salicylates/phenols? What Supplements? Epsom Salt Baths? What else?

Thanks so much.

 

 

 

Momaw,

 

Your daughter sounds similar to my 4 year old son. He has been on a GF, CF, soy and nut free diet for one year. His tics worsened significantly during a cross country move. While his diet was consistent, the stress and change in environmental allergies probably all contributed. I had him on multiple supplements, probiotics and daily azith with no help. Six weeks ago I eliminated corn and also started following the Feingold program to reduce salicylates. He had a dramatic reduction in his tics (approx 80%) which I saw happen over the first 2 weeks on this new diet. I too am hoping to find out how to better help his body tolerate salicylates as we also are on a very limited diet and have eliminated many healthy foods. I plan to follow up with my DAN doc to get her advice on how to help build on these improvements but hope someone may have any additional insights into the salicylates and phenols. Thanks.

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momaw,

 

Could you say which supplements that your daughter was reacting negatively to?

 

Have you tried any digestive enzymes?

 

 

 

Kim,

 

 

I have been using digestive enzymes for the past 3 weeks but can't say I have noticed any additional benefit over eliminating salicylates as that seemed to make a significant difference.... maybe the enzymes take more time? Thanks.

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Betty04,

 

Is your son getting bioset treatments?

 

Patty

 

 

Patty,

 

Yes we are continuing with the bioset. I can't say I am a believer in the treatments but I have not seen any negative side effects. My son's improvements started before the bioset began. I am basically trying to see it through because I trust my DAN doc opinions and she felt it might be beneficial? Hope things are well with you... are you still continuing with bioset?

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Betty/momaw,

 

Betty, are you using no fenol (enzyme)?

 

http://www.enzymestuff.com/conditionsensitivities.htm#10 (lots of salicylate info here)

 

Based on the enzyme action in No-Fenol, these types of enzymes may work more on true salicylates due to their carbohydrate group and not really on the entire class of phenols. Many of the artifiical additives are true phenols derived from coal-tar and the enzymes may not be that effective on artificials, although they totally rock! on real foods

 

This is probably the best place I have ever seen info constucted in one place (pathways of intolerance) You will probably need to read it several times to really grasp all of the implications

 

http://overcomingcandida.com/autism_pst_vi...ns_minerals.htm

 

I would also at least scan this page. If you apply some of what you learn from the PST article, you can start piecing together more of the info contained here.

 

Yasko genetics page

http://74.125.95.132/search?q=cache:0gVAX8...w.vsan.org/rok-

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momaw,

 

Could you say which supplements that your daughter was reacting negatively to?

 

Have you tried any digestive enzymes?

 

 

I have to say that I am not sure which of the supplements my daughter was reacting to, as she was always on so many at a time. The ones I know for sure, have to do with the PANDAS issue that she also deals with. Grapefruit seed extract was not good, and antibiotics (even when they were made up at a special pharmacy to eliminate any fillers) she had a severe reaction to--head snaps so bad I was afraid she was going to have brain stem damage! Even when I eliminated these, she was still not doing well, though she was on Bon-Tech basics and a few other things like enzymes, probiotics, etc. I wish I knew what specifically she was reacting to, but I just became so discouraged and frustrated and trying to figure it out (never seeing improvement by eliminating some and leaving others), that I opted this route of eliminating all and going with an ultra clean diet. Initially I thought to eliminate them all so I could just have a baseline to start over with, and add one at a time, but she is doing so well off of them and just doing the diet changes that now I am afraid to add any back. The salicylate issue seems to maybe be the last piece of the puzzle, as when we really watch them, she is tic free. I just hate to see her missing out on all of the wonderful nutritious foods that have moderate to high salicylates, not to mention how boring a diet is without them.

 

I have tried Houston enzymes, and I didn't see much improvement with them.

 

Thanks for your reply, and I welcome any further comments or suggestions.

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momaw,

 

Hi, you have your daughter on a special diet that has hepled her so much, as you have explained. Just wondering what the diet is and what does your daughter eat in a typical day? Thanks Char...:)

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Betty/momaw,

 

Betty, are you using no fenol (enzyme)?

 

http://www.enzymestuff.com/conditionsensitivities.htm#10 (lots of salicylate info here)

 

Based on the enzyme action in No-Fenol, these types of enzymes may work more on true salicylates due to their carbohydrate group and not really on the entire class of phenols. Many of the artifiical additives are true phenols derived from coal-tar and the enzymes may not be that effective on artificials, although they totally rock! on real foods

 

This is probably the best place I have ever seen info constucted in one place (pathways of intolerance) You will probably need to read it several times to really grasp all of the implications

 

http://overcomingcandida.com/autism_pst_vi...ns_minerals.htm

 

I would also at least scan this page. If you apply some of what you learn from the PST article, you can start piecing together more of the info contained here.

 

Yasko genetics page

http://74.125.95.132/search?q=cache:0gVAX8...w.vsan.org/rok-

 

 

Wow! Thanks Kim! I am going to print these out and read them carefully. My son has not tried No-Phenol. Do you know if there are any potential negative side effects it may cause? The enzyme he is taking is from his bioset practioner. I plan to discuss the use of enzymes with his DAN doc. I did look up No Phenol and it said the primary ingredient is Xylanase and this is in his current enzyme, but it may be more helpful to have it in a higher dose? Thanks again!

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Betty,

 

I can tell you that when I had too many salycilates my son's tics returned in multiples! They were full head swings/jerks vs. eye blinking. I learne this a while ago. I recently tried to go GF and dairy free for his attention issues.....is tics returned GREATLY...I realized I was high salycilate again. I reduced them and went back to my supplements. It worked......

 

I think amino acids and low saylycilate are key for my son! GABA, NAC and Aceytl L l Carnitine........I hope this information helps!

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Betty/momaw,

 

Betty, are you using no fenol (enzyme)?

 

http://www.enzymestuff.com/conditionsensitivities.htm#10 (lots of salicylate info here)

 

Based on the enzyme action in No-Fenol, these types of enzymes may work more on true salicylates due to their carbohydrate group and not really on the entire class of phenols. Many of the artifiical additives are true phenols derived from coal-tar and the enzymes may not be that effective on artificials, although they totally rock! on real foods

 

This is probably the best place I have ever seen info constucted in one place (pathways of intolerance) You will probably need to read it several times to really grasp all of the implications

 

http://overcomingcandida.com/autism_pst_vi...ns_minerals.htm

 

I would also at least scan this page. If you apply some of what you learn from the PST article, you can start piecing together more of the info contained here.

 

Yasko genetics page

http://74.125.95.132/search?q=cache:0gVAX8...w.vsan.org/rok-

 

 

Kim,

Thanks so much for these great resources. It is going to take me awhile to digest them. It really help in understanding how this all works. So, out of the plethera of suggestions, how does one know where to start? It is a little overwhelming.

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Betty,

 

I can tell you that when I had too many salycilates my son's tics returned in multiples! They were full head swings/jerks vs. eye blinking. I learne this a while ago. I recently tried to go GF and dairy free for his attention issues.....is tics returned GREATLY...I realized I was high salycilate again. I reduced them and went back to my supplements. It worked......

 

I think amino acids and low saylycilate are key for my son! GABA, NAC and Aceytl L l Carnitine........I hope this information helps!

 

Tracey111,

I am very interested to hear about how your son has been affected by the salycilates. Would you mind telling me, is he tic free when he is on a low salicylate diet? How do you do it!!! We are gluten/casein/soy free and now with this, it seems like there is NOTHING this child can eat. I was at a real low point today, so tired of denying her everything. She has been enjoying bananas and chocolate at treats, but read today in some of the literature (if I'm interpreting correctly) that bananas block the salicylate pathways, and chocolate is a no-no too, so it just kind of put me in a tailspin of despair today. Such a little thing, but the proverbial straw that broke the camel's back for me. Your response was much needed hope. Do you choose just from the low salicylate list, or from the "medium" list as well? Also, how did you know which supplements to use, out of the many that are suggested? Is there somewhere that you can point me that can help me with dosage info? We have a DAN Dr. that we use, but at this point we have spent a lot of money and have to financially recuperate for awhile. Do you use other supplements than the ones you listed above?

Thanks so much for your response.

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momaw,

 

Hi, you have your daughter on a special diet that has hepled her so much, as you have explained. Just wondering what the diet is and what does your daughter eat in a typical day? Thanks Char...:)

 

 

She is on a gluten/casein/soy/corn free diet, sugar free (she tested allergic to cane sugar), coconut product free (allergic as well). We also eat only organic fruits and vegetables, "natural" poultry, and organic beef, as well as fish (limited fish as she only likes talapia and cod). Basically meat and veggies, which is why going to a low salicylate diet is so difficult--it eliminates a huge portion of what she can eat. We can't do it for long, as she needs a lot more variety in her diet.

A typical day might be:

Breakfast--pan simmered chicken or fish, cauliflower (mashed with butter)

Lunch--mashed potatoes, hamburger patty

Dinner: Turkey and vegetable soup

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Betty,

 

I can tell you that when I had too many salycilates my son's tics returned in multiples! They were full head swings/jerks vs. eye blinking. I learne this a while ago. I recently tried to go GF and dairy free for his attention issues.....is tics returned GREATLY...I realized I was high salycilate again. I reduced them and went back to my supplements. It worked......

 

I think amino acids and low saylycilate are key for my son! GABA, NAC and Aceytl L l Carnitine........I hope this information helps!

Tracey,

I'm starting to think that salycilates are a problem for my child, too. Yesterday, he had pizza with nitrated pepperoni and then had strawberry shortcake for dessert. I started seeing his old jaw/neck tic where he tenses the muscles in his neck and pulls his jaw to the side. He had already had an increase in his eye tics so the naturopath had me put him back on glycine. We also have him on Neuroscience's Kavinace product that has B6, taurine, and another amino acid that promotes GABA uptake in the brain.

Is there anywhere where I can find a good list for salycilates? I don't think I can cut them out completely b/c I know he doesn't react to fresh oranges or grapes, but it's pretty obvious that strawberries might be a problem!

 

Bonnie

 

 

PS: I haven't been here in a while, so hello everyone!!! :)

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