Eliminating artificial ingredients' impact on tics

[Guest Jeff]

Heather, To answer your question... My daughters and I have not been diagnosed. In fact, we've never gone to a neurologist. My nephew, however, was diagnosed when he was about 8 or 9. His mother (my sister) shows no signs of it. When he was diagnosed, I realized that that was what I had all my life. And then my oldest daughter started to tic right around the same time.

There are no other family members that we know of who showed signs of TS, but we do have addictions in our family, and my father has Parkinson's.

Jeff

[Heather]

Thanks for answering Jeff. I have read another article talking about cases of truly diagnosed Tourettes being treated with the Feingold. Now I can't find the article but it was something I read while browsing the net that gave a comprehensive report about treating Tourettes with the Feingold Diet. I am curious since I have a friend whose daughter and son both have Tourettes and do have a clear diagnosis. She is just starting to inquire into the natural treatments. I told her about your family and she is quite intrigued to find out more. She is a little overwhelmed with all of the possible paths to take right now and is currently looking for a naturopath...she doesn't live near me. My feeling is that the Feingold Diet is a solid place to begin until she has a chance to get her kids tested. It is a very confining diet, however, especially in Canada, since we don't have many of the brands that are listed so there is less choice. That is wh any evidence I can give her of success is helpful.

 

Heather

[Guest Guest_efgh]

ALL

 

Interesting and useful thread. I have a basic question - the diagnosis generally comes from the doctor based on our inputs .. the (neurologist) doctor hardly interacts/knows our kids. So, what is the use of an official diagnosis unless we want to medicate the child.. We know more about our kid - we interact with him on a day to day basis and we monitor our child's tics so closely. We take care of some natural therapies like supplements,(with the help of a naturopath) etc to keep the tics under control .....

Would appreciate your replies on this so that the future parents will know if its mandatory to get a label/diagnosis.

 

thanks.

[Heather]

EFGH,

 

My own personal feeling is that the diagnosis does not matter in our case. I feel that my son's tics were environmentally triggered because of various things (stress, antibiotics, etc.) As you say, we are working to heal him with supplements and diet so in our case, the diagnosis really is something that we don't care about. In my friend's case, however, her children have the gene for Tourettes and it has been found to have a genetic link. She is now convinced that natural therapy will help but she is asking me, "Do you think we can actually get to the point where the tics will stop?" Most of the research I have been studying discusses environmentally induced tics stopping but it is rare to find an actual diagnosed case of Tourettes where the tics have completely gone away (as Chemar stated). So when Claire gave us that report about Shula's son and his tics completely stopping with Feingold, it made me think of Jeff's experience with Feingold. This is why I was asking about the diagnosis. My friend is definitely going the natural route and any evidence that I can give her regarding others' experience is helpful, especially those who have an actual diagnosis of Tourettes and it has been shown to have a genetic link.

 

When you speak of future parents and their need to have a diagnosis, I would say that it would be entirely a personal preference whether they want to pursue having a diagnosis based on their particular situation. For some it may be a relief or helpful when dealing with teachers...for other (such as myself), the label simply doesn't matter.

 

Heather

[Guest Guest_Jennifer]

While a diagnosis might be helpful, it is not always absolute. Our son received an official Tourette Syndrome/OCD diagnosis. It kept me stuck researching those two subjects for a long time, ignoring some of the autistic traits he exhibited as a toddler. Those things were mentioned to the doctor, but quickly discounted so I igored those things because I felt the doctor knew best.

 

Like efgh said no one knows our children as well as we do. A misdiagnosis can lead parents in the wrong direction....missing out on treatments that could make a huge difference for the child.

 

Jennifer

[Guest Diane]

Gina

My husband has TS, and when I met him, I did noticed his father displayed mild tics (when he sat on a chair, he rythmically lifted his head up slightly then dropped it down, and the same time lifting his hand up from the armchair and gently dropping it down). My mother-in-law swears he does not have tics but I saw them. Also, he was a very heavy drinker for years (not lately), and had an explosive temper. Now that he is in his 70's, and everything in his body has slowed down, his tics are no longer evident. But I believe he had TS, and my husband got the gene from him.

 

However, the degree to which it has manifested itself is a different story. My husband's two sisters (in their 50's now), have never displayed tic symptoms.

My husband, however, had a severe injury when he was very small - he fell, split his chin open, had it stitched up poorly and then developed a raging infection that he almost died from. Since then, he was a sickly child, and he subsequently developed a fairly severe case of TS, which I attribute to his genetic predisposition for the disorder, followed by the terrible infection that almost killed him. I believe the infection was the catalyst for the severity of his disorder.

 

This is why I try so hard to do what I can to avoid my children getting severe infections (see my other thread re flu vaccines).

 

One last note: I asked our TS specialist, is it possible that when you combine if my genes (without TS) and my husband's genes (with TS predisposition), could the resultant gene combination, in effect, "dilute" the TS predisposition in our children, and he said absolutely, this is a possibility. After all, you see this kind of "diluted" or "mixed" result (for lack of a better word) in gene combinations in hair colour, skin colour, eye colour, etc., so why not TS too?

[Ausclare]

Hi there Gina and Diane,

 

I haven't logged on for a while, because I have finally got my three boys tics 99% of the time under control.

 

I don't think I could have worked it out without this site.

 

I believe that most of the modern day "Tourettes Syndrome" diagnosis has been miss diagnosed.

 

I have 3 boys who have all developed Tics and OCD symptoms in the last 5 yrs.

 

I have been looking at the dietary link for the last 2 yrs almost to the point of being obsessed. ( maybe thats where they get it from!)

My research and experimenting with my kids diets show without a doubt that it is food intolarence related. Salycilates and amines and some natural msg are included in the list.

We now have a completely organic/ biodynamic diet with most of the food being made from scratch. I also give them supplements daily which include Taurate, vitamins and we mineralise wherever possible. I use a lot of seaweed products to do this. Purified water is also very important.

 

On the topic of heriditary genes.

 

I am still not convinced that it is a specific gene problem. I think that it is more an inability of the body to digest and absorb certain vitamins and minerals.

The body's ability to absorb works like a domino effect eg some vitmins need certain amino acids to be useful, if the amino acids are not working/ being absorbed properly then they cannot absorb the vitamins in the right ways/ amounts

this then affects the next mineral etc in line.

This leads to deficiences in a lot of the minerals etc that the body needs to function properly.

By working on the intolerances and building up the immune system and decreasing any food (non organic), toxins such as dust mites, pestisides and environmental hazards, the body can start to heal itself and start to reabsorb these vital nutrients.

I have also found a link to the liver, adrenals and pancreatic enzymes. I can explain that later if anyone is interested.

 

Someone asked me why all of my boys have the same problem.

Well they all came from the same parents, so it stands to reason that if one or both of the parents had a problem with absorbing nutrients this would be passed down. It does look on the surface as if it is genetic, but no-one has yet been able to find the specific gene.

 

I have had such miraculous results from this that I am in no doubt it works. I know some kids have a problem with TV screens and to this I still stand by the vitamin/amino acid/mineral deficiency theory. Some of these minerals are needed to make the synapses on the nerves work properly. If they are deficient then the body cannot adjust itself to abnormal stimuli, this results in tics or epileptic fits.

 

My oldest son went on a school camp a few months ago. He was almost tic free before he went, he had the occasional grunt and eye tic, this was nothing compared to what he used to do.

On arrival home from camp, he was unable to stay still, could not sit, his arms

and legs were flailing about and the he almost had every vocal, facial tic that he had been through in the last five yrs. His teacher who had gone on the camp was in tears with sadness. He was also in tears from the pain of cracking his neck every few minutes etc.

 

It took me 10 days to detox his body from the food that was the average persons "normal diet" and he had mega amounts of supplements, which he asked for because he knew they worked.

He has now gone back to pre camp state and is really good about not eating the wrong foods for him when all his friends have them.

 

I hope I haven't droned on too long and I really encourage you to try the Feingold ( I haven't) or the Sue Dengate (Fed Up) diets. We did the Sue Dengate one because we live in Australia and it was easier to source the food. But I believe they are similar.

 

Good luck and if I find any more amazing things

I'll let you know!

 

LOL Clare

[Claire]

Ausclare,

 

I truly hope that you will start a new thread for your success with your 3 sons. As you say, many of us gained from this site and I think such threads are an inspiration to others.

 

By the way, on the TV issue, I agree with you fully. Though my son's tics disappeared 100% with no CRT screens, I thought it was just an indicator of other things, so I spent a lot of effort looking at foods, vitamins etc... He had the same food sensitivity issues etc that so many here have had. In fact, almost (not quite) everyone here with TV sensitivity had food sensitivities also. A few like Heather, Ronna, and to some degree efgh (?) have seen the sensitivity decrease as they address other issues.

 

Please do share what you feel you learned, and provide as much explanation as you have time for. So many of us here are trying to avoid foods and simultaneously supplement that we are on similar paths. Did your child have yeast or mercury issues also? How did you determine your children's food sensitivites? Are they different for each one? Are they gluten and casein free? What vitamin do you give? It will be very interesting to see similarities and differences.

 

Claire

[Heather]

Ausclare,

 

As Claire mentioned above, I am very interested in any or all questions that you can answer.....yeast? heavy metals? Have you treated your sons for this?

 

Bravo for finding the answers to help them.

 

Heather

[citygirl]

Hi,

i have been following this forum's topics on and off for quite some time.

after having lived with ts for over 15 years, i finally decided to eat all organic and non-processed food. and in the middle of my organic eating month, i have done 10 days of elliminating common foods, such as chicken, beef, legumes, citrus, vinegar, grains, etc... and 2 days of juice fast. i have lost a lot of weight and for the most part, feel good. my general sense of anxiety and panic attacks have all subsided to my surprise. but my tics have not gone away.

per my recommended allergist's advise, i have eliminated wheat and dairy for about a month now and kept a food log. the inter-dermal allergy and RAST tests all do not show that i have any specific food allergies. Skin test did reveal that i was highly allergic to mold, dustmites, grass and trees.

Last couple of days, i have started to have a fuzzy, congested sensation on the left side of my head, including sinus pressure and left arm (my tics are respiratory and right side of my body) and this really depresses and concerns me. i have no idea what could be the cause of this.

it depresses me to think i have made so many changes to accomodate the diet for me and my husband, and i am not seeing results.

i don't know what my next action step should be. does anyone have any idea or insight on what other options i should consider.

having noticed that tv and internet do aggrevate my tics, i have gone on a tv fast for the last month - computer is inevitable due to job requirements, even though i am in the creative field.

thanks to anyone who might have some good words of adv for me.

[Claire]

Can you afford an LCD monitor, if you know these aggravate your tics ? Or get access to a laptop at your office for a month? Or set the refresh rate on your CRT monitor as high as possible (how high does it go?) How long are you on the computer each day? If you have actually noticed sensitivities, this will likely help you.

 

I absolutely understand the frustration of trial and error change of diet, so sorry for you! (I have not heard of eliminating chicken for an elimination diet?) Unfortunately, RAST and intradermal tests show more immediate food allergies, not sensitivities--I am sure of this for the RAST test, and not 100% sure of the intradermal tests. IgG blood tests definitely show the sensitivities related to tics. Can you doctor order this from www.elisaact.com?

 

Are you taking supplements, if so which ones? Did you try the spit test for yeast? Maybe you have elevated metals? These require special attention beyond diets.

 

Do you use a HEPA filter for the dustmite, mold, etc allergies? Have you checked your home for mold issues? Especially for respiratory issues, I strongly recommend the HEPA filter.

 

If your trial and error approaches aren't helping, even with all your diligence, have you considered the alternative doctors listed at the top of the forum?

 

I don't know your financial situation, so I hope cost doesn't prevent you making these changes.

 

Keep talking to us, many will have ideas. You are doing so much, I understand the frustration!!

 

Claire

[Ausclare]

Dear Citygirl,

 

I really sympathise with you. It is really frustrating to eliminate foods and then have little result.

 

It's great that you have gone organic. By this do you mean fruit/ veges/ meat and wholegrain cereals?

It took me ages to figure out that some processed food in the health food shops are just as bad as non-organic stuff.

You have to really read every single label to make sure there are no hidden additives, such as antioxidents and "natural colors and flavours" these can be just as obstructive to tic relief as conventional food.

For instance the colour anetto is a natural coloring that is plant based. They usually put it in icecream and yoghurts to make them look more creamy looking.

They can get away with classing the food as organic because is is plant based.

In Australia the code number for this is 160b/ 160a.

I would highly reccommend that you that you by a code breaker booklet or download one for free from the net.

If you can get a copy of the Sue Dengate book or look up her website,

 

www.fedupwithfoodadditives.info

 

it explains really well about salycilates and amines and natural msg.

 

These were the culprits that were really affecting my boys as well as artificial and natural coloring, flavours and preservative (antioxidants).

I also found it really hard to find a practitioner natural or otherwise who was really educated on these things. Even the naturapaths were a bit blurry on the subject and don't seem to understand quite what an effect these things (sals/ amines) have on people with very low tolarence thresholds.

These intolerances won't be picked up on normal allergy testing. You could try a kinesiologist or some EFT.

 

Hope this helps.

 

To Heather,

 

I didn't do the yeast test on the boys because I was eliminating so much other stuff and an "expert! " told me that if you can eliminate the intolerance foods, the immune system will automatically be able to correct a yeast imbalance.

 

I did do a heavy metal test and found to my horror that they had extremely high levels of aluminium.

I had guilt for ages as we had always cooked in aluminum pots that were handed down from my deceased grandmother! So much for sentiment!

They were out the door very quickly and since I now cook in some really great stainless steel I can't believe the different taste of the food!

 

I haven't had them retested for the levels yet, because it was so traumatic for the first blood test that I couldn't put myself through it again.

 

I would have to sedate them to do it.

It is annoying because I don't know if their bodies have expelled the stuff yet.

I do give them lots of vit C and we eats lots of bioflavinoids wherever possible.

These are supposed to latch on to heavy metals and excrete them.

 

To Claire,

I would love it if you could bump this up onto a separate thread with my other post I'm not sure how to!

 

Thanks

Clare.

[Guest Jeff]

CityGirl, Don't give up on eliminating the artificials. It takes some people longer to "detox" than others. Give it at least 6 weeks. And, like Ausclare said, be sure to read all labels to make sure there are no artificials, including "vanillin".

Hang in there! Jeff

[Heather]

Ausclare,

 

I am a little confused with the "antioxidant" thing. My understanding is that antioxidants are vital nutrients that we need in our diet to fight disease. Antioxidants fight free scavengers in our body that play havoc with our immune system.

 

My son was very high in aluminum as well. Malic acid is something that has been proven to bind to aluminum to help excrete it from the body. My naturopath prescribed a malic acid supplement for a few months to help him rid the aluminum from his body.

 

Also, yeast is an extremely difficult thing to get rid of in the body so I would look into added means of killing it in the digestive system rather than simply eliminating foods. Even while using supplements to kill yeast, it can take months to get rid of. Digestive enzymes and the use of probiotics are also helpful in ridding yeast from the intestine to help digest nutrients more efficiently.

 

Heather

[Heather]

Ausclare,

 

To add to the above, the Vitamin C you are taking is an antioxidant that is needed by the body to promote good health.