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Hi, I'm a fellow Aussie. I often read here, but this is my first post.

 

Don't know about you, but there is so little info here on alternative therpies for TS. I feel like I am bashing my head against a brick wall most of the time, even with the TS associations.

 

I have asked for strep antibody tests when my youngest (3 years, no TS, but a recent bout of tonsilitis) needed antibiotics for strep, and the doctor just looked at me. I said I have TS in the family (my 12 year old) and he had never even heard of PANDAS or its association with TS, OCD etc. He would not even do a throat culture, just wanted to give antibiotics, and he said if that one didn't work, he would try another.

 

Now, since that bout of tonsilitis about 10 weeks ago, my 3 year old'd behaviour has deteriorated rapidly. Now even does a throat clearing thing. He is sooooo aggressive, and uses inappropriate words all the time, without even realising. How scary!

 

Anyway, enough venting.

 

Yes, I agree, we need something here!

 

ps I was thrilled to read of your success with the Sue Dengate, "FED UP" book. We are in the process of "healing our son's gut", hopefully then he can tolerate more "stuff"

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Hi I'm an Aussie living in Melbourne. I've only found this forum yesterday while desperately looking for information for my 12 year old son, who has developed a prominent neck tic.

 

Most of the info on Tourette's is scary.

 

Imagine my excitement when finding Ausclare.

I have been using Sue Dengate's failsafe diet for 10 YEARS, with great success for my 17 year old son who has ADD. It's hard but definetely works.

 

My 12 year old (who does not have ADD) did the elimination diet 2 years ago, when he develped facial eyeblinking and nose twitching tics. but things were much harder to pinpoint, with improvement (80%) taking over one month, and triggers not being really clear cut. (Quite different to the 17 year old who responds in a matter of days.)

 

He has been fine over the last 2 years with only slight eye blinking when tired, and he hasn't been strictly failsafe, although what we generally eat at home is low on on non-failsafe.

Hower suddently six weeks ago after a stressful period (and a time of more than usual high chemical foods) things have flared dramatically.

 

 

I was intending to go to RPH hospital Sydney for RAST tests and extra help, but over the phone last week, they thought the Tic was due to puberty hormones and stress.

They advised not to do the elimination diet, but just feed him normal good food.

 

I'm feeling confused, stressed and not knowing what to do next.

 

For now I've gone to moderate failsafe foods, without making it a big deal, to see what happens.

 

I have so many questions re your success.

 

What did you eliminate? Wheat & dairy as well?

 

How long before you saw an improvement and did you have any withdrawal syptoms?

 

What does each child react to?

 

I'd also like to know about the supplements you are using.

 

Can't wait to hear!

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Welcome Caz and Marina,

I can hear your accents in your posts!

To Caz,

Find another GP!

I haven't been able to find a decent one yet, so we avoid them unless I need a referral for anything.

If you have to use antibiotics, ask for the adult capsules instead of the kids one which will be filled with colours and flavours.

The Dr should be able to adjust the dose. They do it for me, but my kids are a bit older.

Having said that I've now learn't to avoid specialists as well.

I recently had a horrible experience with a childrens allergy specialist at the Royal Childrens Hospital Melbourne.

My boys are 5, 7and 9. The little one is the hardest to reason with but he shows the least symptoms and I cannot get any supplements into him.

He is pretty good on the diet though. Luckily he likes pears! He is supposed to start prep next year.

My 7yr old has always had problems right from birth although if only I had known they were intolerances, life would have been a lot easier. He started with reflux, constipation and the worst excema. I still didn't understand because no one else in the family was like it. Finally I found a pead after 3 attempts and numerous blood tests and drugs. He prescribed neocate formula and we had some peace. The excema cleared up within a week and no more vomiting.

He stayed on that for 2 yrs and then changed to oat milk, then soy.

He has always had dark circles under his eyes (allergy shiners ).

 

He also has a great personality and can be very loving, but we would only see glimpses of this ocassionally.

This year he started ticcing so badly out of the blue. It was really frightening to begin with, and he was really bad with the uncontrollable shouting out. He couldn't say a sentence without shouting half of it.

This kid never does things by halves!

He was going to school at this time, but I dreaded picking him up, because he had held the tic in in the classroom and then said he waited until the playground was really noisy before he would let some out.

It broke my heart. The teacher didn't notice anything, but when he came home, it would sound like someone was being tortured.

After looking on here for help, I noticed that diet was a big issue, then one day one of the other mums at school told me about Sue Dengates book.

We haven't looked back.

I have to admit that if they are sick or feverish,or under a lot of stress (like having to tidy their room!) the tics return a little bit, but they usually resolve once the virus has gone.

 

I'll continue on the next post.

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To Marina,

 

We did the basic failsafe diet and it took about 12 days to see an improvement.

 

The 7yr old showed the most miraculous changes. His black eyes disappeared and he became a lovely calm and helpful child. Before that I would be wary of looking at him the wrong way! The tics decreased a lot too, but it took about another month to really see a difference. I did end up taking him out of school, this helped a lot. We now homeschool him and his little brother. The older one who also has TS wants to stay there. He has a great supportive teacher, but I think she is leaving next yr, so hopefully he'll want out too. It is really hard to control the diet when other kids offer corn chips and such.

 

After doing the basic diet, we had changed to completely organic/biodynamic food anyway and this included meat. I am lucky that we live in the Yarra Valley in Vic.

There are a lot of like minded people so I have good access to wholesale prices and I joined a food co op. I have almost got the shopping down pat and I reckon I would spend the same amount on organic as others would in Safeway for all the artificial stuff!

 

We still stay failsafe most of the time, but I have to admit that the last couple of weeks they have been eating more fruit and it is beginning to show. I had decided to start back to basics this weekend.

 

 

The supplements I use are

Phillip Alexanders (Formula Six) they are low allergy no gluten, milk colours or flavours Multi Vitamin You can get them direct a lot cheaper or order through a naturapath. 02 99812225 or 0299827135. I use half a one per child and crush them.

They each get 1 teaspoon of taurine mixed with it -MUSASHI brand.

1 teaspoon of vic C powder - MELROSE.

I am also trying to get them onto Melrose Barley grass powder, I use it and its fantastic, but it tastes gross and they won't have a bar of it.

 

So I give the GRANTS liquid chlorophyll instead spearmint flavour. If the tics are really bad neck crunching ones, I give them Comb 5 (5 phosphates) MARTIN & PLEASANCE tissue salts. Also great for leg cramps during pregnancy!

 

I don't know if any of them are failsafe, but I'm torn between a rock and a hard place. We did the diet alone but we needed the supplements to make it miraculous.

 

I have also got Sandra Cabot Liver Cleansing - Livertone plus powder, but I haven't tried that with them yet.

 

I'll try to answer more questions later, but I don't want to talk your eyes off!

 

 

Good luck

Clare.

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Guest Guest_efgh

Ausclare

 

Congrats on your success! Can you please let me know what is failsafe diet?? Is it something like feingold? Does failsafe diet not allow one to eat fruits??

 

thanks

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Ausclare,

 

I am amazed at your research and finding what works for your boys, especially in an area where you say it is hard to find any supportive doctors.

 

My question is the same as EFGH.....failsafe diet??? It sounds like it might be similar to Feingold when you mention the fruit as triggers.

 

Heather

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Hi Heather,

I've copied this off my post on the allergy thread.

 

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 annetto 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's also called the Failsafe diet,

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.

 

It is like Feingold I think. Thats just what I've picked up from reading Jeffs posts.

I went with Failsafe because she lists typical Aussie brands of food that are ok to eat. She also has a page in the cookbook which compares Aussie and American words.

EG our cordial is your Kool aide, so it would be suitable for you guys. I also get posts from the Failsafe forum, and I think there are a few overseas people using it.

 

 

Love & healing

Clare :wacko:

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I have seen Sue Dengates book in the bookstore, and will try to get a copy. We are basically trying the gluten free, casien free thing at the moment, have given ourselves 4 weeks to see if it makes any difference. Having 5 kids, I am having to be super organised to avoid all the prepackaged things.

 

We live in Perth, great place to live, but am finding it quite hard to get a hold of lots of the supplements I am seeing recommended on this forum. We find carnitine to work a treat for our 12 year old (making tics 50 - 70 better) but have to use 1500 to 2000g, and cost wise, this is becomming prohibitive. My son doesn't like to eat meat, where the carnitine comes from, so this is a big challenge.

 

Off the topic, has anyone here read about the blood group diet? Just borrowed the book "eat for your type" from the library, and am interested in any opinions...

 

Caz

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Caz, and everyone else considering diet, Buy, borrow or as a last resort steal Sue's Dengate's books!

Another site for intro to Failsafe food is the Royal Prince Alfred Hospital Allergy Unit at http://www.cs.nsw.gov.au/rpa/Allergy/

 

For our eldest son, out of all the things we tried by the time he was ten; doctors, nautropaths, vitamins, dairy & gluten free, medications and goodness knows what, Failsafe was the most effective, and still is.

Not easy, and over the years there have been a lot of ups and downs. But I'd hate to think of what life would have been like if we didn't try it.

 

Reading about experiences at dotors, Royal Children's hospital, allery shiners, walking on eggshells, makes it all vividly come back.

 

Culprits are food chemicals common to many foods. Its the total load, and trying to test food by food won't work.

 

It's fantastic that parents now have so much support from each other. 10 years ago you felt so totally isolated.

No one wanted to know about diet at that stage. In the end I ended up ringing Sue Dengate in Perth for info after reading her first book. The high cost of the phone calls was the best money spent ever, and was the most important link in changing our lives. She is such an amazing and inspiring person.

 

Parents are the best source of information.

 

Ausclare, I was sooo relieved to hear that tics took longer to improve on the diet.

I thought the results would come fast, like the night vs day results that happen with my eldest in the space of days.

I'm also at the stage of just being in panic mode at the moment, and feeling overwhelmed that another of our children has to face a battle.

How I wish that these tics will be just a passing phaze. Maybe that will be the case as he has no other symptoms.

I will check out the supplements.

 

By the way I live at Eltham, just on Ausclare's doorstep, and am going to Perth in two weeks!

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HI all,

 

Just to let you know don't feel bad if it looks like things arn't improving or look to be getting worse. My middle son who had the best response to the diet (the homeschooler) started to show some loud tic noises the last two days. I started to feel like a hypocrite and couldn't understand what had happened. :(

 

Well last night all was revealed

He was up all night vomiting and this morning is stuck to the toilet! :wacko:

 

I didn't think I would ever rejoice in that! But I know that was the trigger for the tics this time. There was no fever, which had put me off the trail!

 

 

I'll keep you posted on how long the tics take to go again.

 

Marina and Caz,

 

Great that you have both found this site, it is so great to have somewhere that we can release our anxieties and know that others are in the same boat.

 

Whenever I was really at my wits end, I would read through some of the posts and sure enough the answer out of the 1000's of answers here would pop up on me.

 

It is so good not having to rely on the medical profession for info and I am a great believer in taking responsibility for your own health anyway.

 

I asked one of the Dr's at work the other day how much of their 5yrs medical course was devoted to nutrition. Answer- 1 semester in yr 3. :o

That should explain everything!

 

LOL Clare :

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I will go out and get the book tomorrow. I have looked at the website www.fedupwithfoodadditives.info and there is lots of great stuff.

 

Oh, sometimes this is so hard! I often wish I could just go to sleep and wake up in the morning and all the tics and stuff would be gone in my family! My son is such a great kid, and he has come such a long way. He is so good with not eating junk or stuff I suggest he doesn't, and he takes his supplements with no fuss. It is so hard on him when his tics flare up like they are now.

 

Right now his nutritionist has suggested giving glutamine to help heal his gut. He has a leaky gut as per intestinalal permiability testing. I have read elsewhere that this is not a good supplement for TS. Maybe this is why his tics are worse, or I am just imagining an increase because I suspect one will occur - oh, it is so hard!

 

I know we need to sort out what foods he should and should not be eating, as this is a big part of the gut problem.

 

HOpefully the book will help.

 

I am feeling inspired by your stories of success. Thanks for sharing them!

 

Caz

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Caz,

 

I read the same thing about glutamine and tics, and glutamine and the gut. However, I have seen more scientific input on glutamine and the gut, but only individuals discussing the tic aspect of glutamine turning into glutamate. Our DAN doctor doesn't think it is an issue. Nonetheless, we just started the glutamine and I will keep an eye out.

 

Claire

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It is nice to see all of the Aussies connecting on here.

 

Caz,

There were many times I felt like you....just wanted to go to sleep and wake up and it be all over. It will come. I am finally getting to the point where the tics are not in my thoughts every single minute of the day. It has been a long time coming but belief in the healing and perserverence in finding the answers for your child will pay off.

 

I remember many times when the tics would get worse over the last year and I would think "oh no, it's not working" and then I would realize there was always some reason for it to happen....a virus or a hidden ingredient I hadn't seen.

 

Ausclare,

I also agree that it is nice to feel responsible for the healing ourselves and learn the answers that work best for our children instead of waiting for the medical profession to give us answers and feeling totally at their mercy. The sharing on here is amazing and there were also many times when I would be stumped about something and sure enough, I would pore through the posts on here and the answer would pop up.

 

Thanks for the information about failsafe. I have been reading up on it and it sounds like it is the same principle as Feingold.

 

Marina,

Yes, the food elimination may take awhile to see results so keep at it. There may be other airborne allergies affecting him as well. Hepa air filters may help. You are right, the chemicals are the culprits and it disgusts me now to read product labels and see the artificial ingredients that we are putting into our bodies. It bothers me so much that my son had to suffer through the sometimes debilitating tics because of what these chemicals did to his body.

 

That is great that you found the failsafe for your older son when there was little to go on at that time.

 

Keep sharing!!!!!

 

 

Heather

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Heather,

 

Thanks for the words of encouragement! What a difference a day makes. Today I am feeling confident once again. I am off to buy the book recommended here, and will give that a try.

 

To the other aussies trying this diet - what on earth do you give your kids in their lunch boxes?

 

Caz

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