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Ausclare
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I agree it would be intersting to see what type of pregnancies others experienced with their kids who have these challenges.

 

Thanks Ausclare again for all the great info, I am trying to eliminate all the artificial stuff first in our families diet. Can't go too fast as my eldest is still wheat/casien free, and he tells me he is starving!

 

Actually I think he has grown at least an inch in the last 3 weeks since he has been off this stuff! We are giving him a protein drink in the mornings to get his protein intake higher, so maybe that is helping him grow as well.

 

Learning about all this stuff is so fascinating! Now I must go out an buy the fed up cookbook. Right now, I don't know where to start for the next step.

 

To Marina, if you check in whilst on holidays in Perth, send me a private message. Maybe we could catch up!

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I have no idea about protein and growth, but I am guessing that that may be the difference. For many years my son has been semi vegetarian by his choice - does not like meat. I try to camoflauge it, but he still wont eat it. He has always eaten lots of eggs though.

 

Over the past few weeks we have been giving him a protein drink with his breakfast so he is getting a balance of amino acids ( this drink is a casien free, lactose free whey product - tastes semi ok). Often in the past he would quickly eat an apple, or have a piece of toast for breakfast. We are now concentrating on making sure all the kids have a healthy breakfast to give them good nutrients for the day. IN the past the kids would eat a light breakfast, snack at lunch time (often bringing half their lunch box contents home again at the end of school) and then eat non stop from school ending till they went to bed.

 

Maybe the difference is the times they are eating and what they are eating, more than the protein - who knows......

 

Caz

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  • 3 weeks later...

Hi everyone

 

Wasn't sure where to post this so back here.

 

Feeling totally frustrated! :D

Before going away recently, we had an 80% improvement for about 10 days straight.

I used Clare's 7 day system and reduced food chemicals, stress, screens. Also added many of the vitamins suggested by Ausclare.

Most changes were achieved without our son being aware of them, so as to make the Tics a non issue in the house.

 

I expected the Tics to return on our trip because of the no food restriction (believe me he would have consumed everything, as he was part of a school team of 14 children), and stress due to the competition.

Sure enough they did so I know food and stress are an issue. No screens while he was away.

 

Once we got back, they diminished slightly, but we both decided to go ahead with the full failsafe diet so that by Christmas testing would be over.

I wanted a very clear picture of what his food triggers were.

Games but not TV was eliminated (This I think was harder than food)

 

We are now in day 10 of the elimination diet, however symptoms over the last 5 days have become worse. Initially I thought Withdrawal symptoms.

Now I'm thinking that it is increased stress and awareness of all the restrictions. He follows everything so well, but it's obvious that it is on his mind a lot.

 

I have again looked at many of the posts and wondering what to do next.

I'm thinking to continue the diet for another week or so however.

Has the cure become the problem.

 

Any thoughts would be very welcome.

 

Ausclare, did your children have withdrawals?

Caz How is the diet going for you.

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Marina,

 

Did I read this correctly: Initially you cut out ALL screens, plus a number of other things. The tics went away by 80%. You then reintroduced some foods and saw problems. So you started an elimination diet again and at the same time you reintroduced TV (but not computer games). 5 days later, the tics started again and they have been going on for 5 days?

 

If I understood this correctly, then here is my 2 cents:

 

Given that the prior food elimination didn't cause worsening of tics, only improvement, I wouldn't think removing them again the past 5 days wouldn't cause any 'detox increase'

 

So it is quite possible that the reintroduction of the TV itself could be an issue. While some see an instant reaction from a reintroduction, it sometimes takes several days--or even a couple of weeks for the cumulative effect to show as tics, so it wouldn't be odd for the tics to show after 5 days. This was the case with him at one point.

 

The biggest problem with the 7 day plan is that reintroducing things must be completely methodical to see what the main triggers were--and for school age children, life intervenes! It sounds like you have narrowed it down to 2 things though: the TV or the stress. But you do have a way to find out--remove the TV also for a week. I know this is tough. My son use to tic more from stress, but again, with no TV/screens, he didn't tic at all, regardless of the stress.

 

What I must say I would do is to remove the TV again (my 2 cents, no offense if you don't agree). It won't take the whole week to start seeing improvement (and hopefully he isn't getting computer/screen viewing at school now that you are back??). If he does improve, then if you can afford it, you can try an LCD monitor. If you have a laptop--try a DVD on it (lower the brightness, then view it as a TV, from a few feet away in a well lit room) and see if he reacts to that.

 

When we first started, we had to even limit LCD viewing. Now, with the mercury/yeast/gut healing/vitamin treatments my son can have unlimited viewing. He also is back to eating all of the foods he was sensitive too (there were twenty of them) except wheat and milk (he does have cheese). efgh, Ronnas, Heather...all removed the triggers once the healing occured.

 

Of course, tic awareness can cause some pressure and regression for some, so this is all quite delicate.

 

If removing the TV doesn't do the trick, then stress becomes the leading contender. Of course, stress can cause other health imbalances, so it has a direct and indirect effect.

 

Good luck,

Claire

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Marina, I was fascninated to see your post thismorning.

 

We have been doing the elimination diet 100% for about a week and a half, nothing artificial for at least 4 weeks. (Therefore only introduced the limitation of salycilates and amines recently). What a weekend!!!

 

All was going really well, until friday night( Tics still there, but noticibly less. My son had a overnight camp. I relented and allowed him to have Hungry Jacks - a burger and fries on Friday night, then I supplied only white marshmellows and some caramel lollies and failsafe chips for snacks - he did not stick to it - said it was too hard, so he just ate whatever he liked. Satuday and Sunday were terrrible, and I only saw him briefly this morning, and things seem the same.

 

I am feeling really deflated! Things were even worse for a little while on Sat after he ate vanilla yogourt. He has tested negative for milk, but the yogourt was a problem, lots of sniffing and stuff. That lasted till he went to sleep, seemed better yesterday.

 

As far as the others go, for no 2 (daugher), she has not had a migraine since we started, but had them at least weekly before. No 3 (daughter) - no major issues before. No 4 (son) the one I think may be pandas - at least his tics started after a bout of strep, which he was put on antibiotics for. Doctor does not know/believe in pandas, and as there is a history of tics, maybe this is just a coincidence with the timing. After a week and a half on the diet, the throat clearing is worse than ever. No 5 (baby) - he is still a grott, but at the moment he is not well, so it is hard to gauge. I think maybe he has an ear infection.

 

My wrap up - we will keep going with it, but maybe it is not the magic bullet I was hoping for.. I guess the biggest test will be the challenges rather than the elimination period.

 

Caz

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Caz and Marina,

 

What elimination diet are each of you referring to? (Marina for your first week--I know later was Feingold and Caz now)

 

No corn/milk/wheat/eggs (the list people here reacted to) or the Failsafe diet (no artificial ingredients and fruits (except pears)...or does Failsafe eliminate corn/eggs...etc?

 

(I know Caz mentioned they didn't cut out gluten anymore).

 

I am asking because 1) we will ALL benefit from knowing exactly what you cut out. and whether it worked or not, and 2) just being specific may raise good ideas for you from others.

 

Marina, is the diet you did the first week the exact same as you are doing now? Or could this be another variable? Sorry, since I don't know Failsafe totally (to me it is Feingold (no fruits/certain veggies/no artific ingredients) + no amines. So maybe this IS an elimination diet such as my own allergist had.

 

Thanks.

 

Claire

 

ps Caz, I wish so much that you could do no screens for a week. 2 others with a PANDAs dx (Heather and Ronna) really saw a big difference at the time. For my son, this was 100% of the issue. The food helped with a minor bit of fidgetiness later, but really, screens was the only and complete solution. I know you are doing LCD, but for a while my son had to limit that and even eliminate it.

 

At least you and he would know-- if it 'failed'--then you wouldn't worry about it or sweat it when he played. No bribe good enough? But I know I know I know about this and pre-teens. I am lucky (not the right word though) that my son was only 8 when we did this.

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It is my eldest with the most severe tics, just now the younger boy is starting to show them too, since strep.

 

I have no receollection of my eldest having a sore throat as s youngster, but now I think about it, everytime he went to the ENt doctor re ear infections he kept mentioning how large my sons tonsils were, abnormally large, anyway... hindsight is a marvellous thing.

 

With all the food restrictions, I dont know how I could possibly try totally no screens. Limiting it to 30 minutes per day on lcd screen was bad enough.

 

All his mates play an internet game, utopia or something, and I already make him miss out on so much other stuff, I don't have the heart to take this away as well.

 

We are going away for a week over christmas, to the beach, so maybe that would be a good week to trial it.

 

I have tried bribes, right now we are doing that for food restrictions.

 

Its so hard.

 

Caz

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About the diet, it is basically the fiengold diet plus restriction of amines as well. Do elimination for 3 - 6 weeks, then trial salycilates then amines, then other things. But i think I need to go back to no milk products as well.

 

Hardest thing about this failsafe diet, is to replace all the flavourings and stuff you use alot of salt and/or sugar/refined carbs. It kind of goes against my grain a little, but we have to try these things.

 

Caz

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Hi Claire and Caz

I'll try and retrace for my benefit as well.

The diet I am using is failsafe plus no dairy (yes it is similar to Feingold plus no amines).

The elimination diet is a much stricter version than what I did a few weeks ago.

 

Earlier I basically reduced everything listed as a possible trigger as an emergency gap until we came back from our trip. I did not completely eliminate anything at that stage, hoping for a more systematic approach latter.

So earlier:

1. Food- modified version of failsafe. Allowed fruits & veg listed as moderate in salycilates and amines, however no artificail stuff, and reduced milk to about one to two cups per day.

This was fairly easy to achieve as it's similar to what my eldest son follows.

2. Screens. Reduced tv & games to about one hour per day.

3. Stress. Completely ignored tics and made it a non issue. Previously I think he could sense our concern. Encouraged him to get involved with his hobby of painting warhammer models(not sure about paint smell) and set up table tennis in the garage with lots of family matches.

4. Reduced household chemicals

5. Used a multivitamin & magnesium supplement.

 

With above 80% improvement.

 

While away symptoms increased.

Therefore sure that food and stress was an issue. (Stress due to a major National tournament)

Screens during our 5 days away were actually even further reduced, and kept up vitamins.

 

Once we go back symptoms started to reduce.

I had originally decided that I would try the full elimination diet after Xmas, as there were so many things going on. (Spoke to Sue Dengate who also advised to wait, but thought that the initial trigger may have been the 600 range of additives. She has had many reports of these additives causing seizures in pets.) However I was so confident it was food, that I decided to go on the full elimination diet and no games.

So 1st few days some further slight improvement before a decline. (Now he has a eye and neck roll tic, although he feels it is just that his neck feels stiff and that the movement relieves it. Maybe. I don't know anymore :D )

 

What's changed.

1. Diet much stricter. Therefore much more stressful and by it's very nature puts focus on tics.

Alternatively the stricter diet may mean eating more of another food. eg:Wheat Unfortunately I was so sure of the result I was expecting, that I didn't keep a full food diary this time. Will start.

 

Also withdrawal symptoms maybe not an issue earlier, because food restrictions not as dramatic.

 

2. Screens. Although no games, he has watched much more TV(normal screen), and has been using the computer for a major schood assignment (I think LCD screen). YES screens have dramatically increased in the last week, however while away he had very little screen time and symptoms got worse.

 

Looking at the above the variables are all still major contenders but I can't seem to test the food or screens without the frustrating STRESS variable! (HIM & ME)

 

Also this evening, the development of a cold and blocked up nose further complicates things.

I have just relented and gave him a degongestant with a vanilla/peach flavour. All that work temporarily down the drain.

 

Claire how right you are when you say life gets in the way.

I have a science/psycholgy background and in my younger days used to get into trouble at uni listing too many variables that may have effected results. My argument was that people are not black boxes with straight forward single cause and effect senarios. Seems my punishment now is living this challenge! Still I believe that while we can observe and keep asking questions, answers become clearer.

Thanks to everyone for the sharing and focus.

 

We also did the elimination diet two years ago

(That time I kept careful notes)

He had a eye, & facial tic.

 

First two weeks of failsafe and no change.

The third week I aso elimiated dairy, and saw a sudden dramatic improvement.

 

However testing milk over 10 days showed no response, and I concluded that eliminating milk also further eliminated the few remaing flavours ie: vanilla in yogurt and icecream which he ate on a regular basis. These are meant to be limited on the basic failsafe diet, and completely eliminated if there is no improvement after a few weeks. (Caz, the flavour and not the dairy in the yogurt could be the culprit).

Challenging salycilates and amines showed a slight rather than major response, and seeing that his symptoms at that stage had reduced so much, we left it at that, thinking that major trigger was was out of his system, or avoidance had healed his system. Didn't know about screens then.

In the subsequent 2 year period, he would have a eye tic if tired or if there were bright flouro lights (eg: at basketball stadiums. Is this a similar reaction to the flicker in screens?)

He is proving to be quite challenging.

 

I now see that my eldest was really easy to sort out. I did the failsafe elimination diet and challenges 3 times to make sure we were consistently measuring the same thing, and each time got the same results. He can eat much more now, probably because he is so much bigger.

 

The food connection started with the successful resolution of my own major health issues, but that's another story.

 

 

Caz, I won't completley throw the towel in yet if you don't! Your weekend shows that one son reacts to something! and great about the migraines.

With son No 4. Sounds the same as mine.

Do you think the diet, games issue has increased stress for him, and that its affecting results?

The first thing my son wants to test is Games and he wants the deadline to be THIS Thursdayso he can play with a friend. How powerful are they.

Maybe if he does play a little he will relax, and we can just get on with the rest of the testing. Also I'm thinking that I'll go back to moderate foods, hopefully get 80% improvement back and then challenge.

This might achieve more clarity than my total confusion at the moment.

Must now wait for the cold to go.

 

I'm pretty sure Ausclare said improvement in her son's case took a month.

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marina,

 

We all have this problem with variables...I am doing the same with yeast overgrowth. I am trying multiple things --I just want it GONE. Later I will sort it out which of it was good if it works.

 

You said: "YES screens have dramatically increased in the last week, however while away he had very little screen time and symptoms got worse."

 

I don't want to overfocus on the TV, but I thought you said the tic got worse during the week that you said that TV was down a little BUT food restrictions were lifted and he was in some stressful competition, so you had offsetting factors there to make that screen measurement tough to assess independently.

 

Please note Marina--- I am not pushing 'no screens' if this isn't right for your family. I am just trying to make sure that before you rule it out, that you have done the 'test' correctly. Sort of like saying you tried Failsafe by limiting fruits and artificial stuff vs eliminating them, e.g. having just 1 piece of fruit a day (salicylates) and one candy bar with artificial colors, vs the 3 pieces of fruit and 2 colored candies before engaging in Failsafe. Both screens and diet efforts require elimination and reintroduction to be assessed properly. Though with screens, you will definitely know within one week if there is improvement--and it shouldn't get worse first. Also, yes flourescent lighting is definitely a light flicker. If he is sensitive to this, then the computer/TV is much more likely to be an issue.

 

It sounds like one thing at a time is tough enough for your child! (The chemicals burden is more on you than your child). Good luck with the food transition.

 

Claire

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Claire

 

I welcome your suggestions and perspective.

 

Yes, I must also do the screens test independently, and one week should be easily achievable. (I hope).

He is happy for a week trial as long as he can have a break with no screen restriction next week. Sounds fair to me.

I love the idea that symptoms should not get worse.

The lingering sensitivity to the flouro lights points to this being a factor.

 

I totally agree that elimination & challenging is the only way to get a clear picture, otherwise we end up restricting things that may never have been an issue in the first place.

Assumptions, are dangerous..

 

But like you, I just want it GONE and fast.

 

Will keep posting (Success & failures)

 

Marina

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Thanks guys for the inspiration. I won't throw the towel in yet!!!!

 

I admit I was feeling quite flat yesterday, making everything from scratch is really hard work!!! With a sick baby, and kids hungry and wanting something yum now - I was feeling quite despondant, but what a difference a few hours makes.

 

My no 2 kid, the one who gets migraines told me last night that she got he work finished first in the class yesterday. (This is the dreamy kid, who very rarely finsihes anything) and then she said that her teacher commented on how happy she seemed lately, and how pleased he is with her work. I guess comments like that make it all worthwhile.

 

Marina - interesting about the vanilla comments, I will bear that in mind. We were using nestle naturals vanilla, so will simply try to eliminate all vanilla flavours as well.

 

Right now the tics are as bad as ever for eldest, which is quite discouraging, but like you, maybe it is something he is eating more of that is making the difference, or he is still reacting from the weekend.

 

i guess I need to keep a food diary.

 

Caz

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Hi Guys,

I haven't logged on for a couple of days (sorry)

Glad to see your back Marina- did they win?

 

Stop stressing about the tics, its the time of the year. Connors tics have just become so bad in the last week that I've kept him home from school the last 2 days.

 

This is the kid that I got down to 1% tics.

My boys have been having a lot of sleepovers at their nana's the last couple of weeks, this entails watching copious amounts of TV and playing bonkhead on grandpa's computer for the rest of the day and nana loves to give them homecooked corned silverside (which the butcher assures her has nothing nasty in it, not even salt!). One day I'll have her educated!

 

They haven't been sticking to the diet either.

I always find that the tics increase for Connor in the 4th term of school anyway, maybe bacause they are getting tired now closer to the end of the year. Plus with the daylight savings changover their body clocks are out of whack.

 

I know that Connor had some issue with a child at school last week and I think the tic started midly then, but became worse over the week because another kid he was sitting behind would turn around and glare at him for making noises. This of course stressed him out more, so he ticced more.

I have run out of the formula six tablets for the last 3 weeks. So I think this has exacerbated the problem.

 

I think it was Chemar that mentioned the waxing and waning of the tics at certain times of the year/month and moon phase. Hopefully she'll read this and add to it.

 

I'm starting the failsafe diet full on again next week, when I've caught up on the cooking!

 

Caz did you try the yum balls in the failsafe cookbook, they are delicious!

 

It did take me a good three weeks to get good results last time.

 

Marina,

maybe you could take the stress off him by telling him he only has to try it for a month. That way it may not seem like such a big deal to him and could relieve some stress.

 

Caz, I'm glad your seeing the difference in your daughter, it sounds like she had some classic Sue Dengate symptoms with the dreamyness.

 

Claire, I bought an LCD tv today, I'll let you know if it helps after I detox them from Nana's tv! :D

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Thanks for the encouragement.

 

Regarding the "time of year" I find everywhere I go, people are complaining about hayfever so I guess if allergies affect our kids through their tics, then this explains it.

 

I had an appointment with a naturopath today, not my usual doctor, but a lady who actually houston neutraceuticals (the people that make no fenol) referred me to, as she stocks the products. I rang them, and wanted to chat to her about the product, and she said to come in and have a chat. Could have blown me over with a feather when she started talking about pfieffer clinic, and methylation. She actulally copied some pages from their book about undermethylation.

 

She said there is a lab in Sydney that it hoping to start testing for this in the new year. They apparently already do pyroluria. My son had his done thru a lab in the Gold Coast, so that was interesting.

 

She even knew about Pfieffers metalleathion (wrong spelling) and said there was a compounding pharmacy in the ES that makes up Pfieffers mix.

 

I will chat to my son about whether he wants to go see this lady, she is a naturpath not a doctor, and had never treated a case of tourettes, but she sounded really knowledgeable about Autism Spectrum Disorders - of which Tourettes may or may not be part of.

 

I'll keep you posted about the Lab if I find anymore.

 

Caz

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