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Everything posted by Caz

  1. This will be our biggest challenge as I have said before. I guess I feel soooooo bad being so restrictive anyway, that I don't want to take away his last love!!! He will be computer free all weekend as his has other plans, but it is hard when you are trying so many things at once to confirm which one works.... Caz
  2. I can't believe that the game manual mentioned it being a trigger for tics. What type of game are they playing if you don't mind. My kid is into games like utopia on the internet, and simulation games like warcraft and war of the ring(Lord of the Rings). I am intregued now. Ausclare, we had a similar incident last year with the tics, and kids imitating him etc. Didn't have the teacher incidents, as one of the teachers in the school had a kid with TS, so I think she helped smooth the waters, but regarding the other kids, apparently the girls in the class complained to the teacher about the whole thing, and said something to my kid about how awful it was for them to do that. Anyway, they had a class meeting about something else, and when asked if anyone had anything else to discuss, my son said yes, and told everyone about TS, and why he does the quirky things, everyone was fascinated, and as far as I know, there has been no more teasing. Actually the kids all wanted to know more about it, and asked lots of questions, and have since been really supportive. I used to think it was best to keep the "facts" out of it, and hope everyone just accepted my kid for who he was - I'm not so much into labels - but this experience taught me heeps, sometimes it is better out in the open. Hope everything sorts itself out with your son Caz PS I tried the yum balls yesterday - they were a real hit.
  3. Lyn Sorry about the web address, yes Micheal was his name. Hope he can point you in the right direction if this is the way you want to go. To me, hair analysis can show two things, one is that you are eliminating these metals, or two that you are not eleminating them at all, and the body is holding onto them, that would be where you get very small readings. Both of these things are an issue, and I guess you would need someone experienced in looking at the patterns of the hair analysis, rather than the individual values to help you move in the right direction. Good luck Caz
  4. Lyn, When you said you were from Singapore, it reminded me of a conversation I had with a guy here in Australia, who specializes in treating kids with ADHD and ASD. He says that he has not specifically dealt with Tourettes, but he believes his treatment would work for them as well. When I spoke to him recently, he said that he was busy at the time preparing to do some training in Singapore in early December. His web site is www.adhd-specialist.com.au You could contact him and get a referral for a naturopath/nutritionalist who is treating such conditions naturally as he is. As he is training people there in these techniques, those people must be at least open to alternative treatments, and things like hair analysis He is an older guy, retired I imagine, but he has written a book detailing latest treatments for these types of conditions, and he seems quite knowledgeable. Good luck Caz
  5. 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
  6. 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
  7. Just a query, do you find giving the b vitamins after dinner keeps your child awake? I found it made my kid a bit wired after dinner, now I only give in am, and use slow release ones so they last through the day. I actually only give one "50mg" b complex and that seemed ok. (I have since found they are synthetic anyway, so am looking for another brand now. ) Are you seeing a doctor/naturopath or are you doing it yourself? I would think 200mg of b's is a bit much, but then if you know he has a deficiency or has pyroluria then high dose b's, exp b6 are ok. Caz
  8. 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
  9. 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
  10. 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
  11. Thanks for that Claire. Did he give you his success rate for no-phenol. I guess I would be more interested in the fruit/vegie angle than the additives angle. I know there are anacdotal accounts on his website, wondered if he spoke to you about that. Can people on the fiengold diet take no fenol, and then be able to eat these fruits/vegies again. Did he talk about salycilates? Caz
  12. Was just reading somewhere about these phenols, and found that kirkmanlabs also do a phenol-assist product. They also have a product called phenol assist companion that contains all the nutrients, needed to help the body with its sulfacation. Kirkman labs phenol assist product Thought you may want to check it out. Caz
  13. Thats a hard list of stuff to avoid! Best of luck. Let us know if you feel better once you are minimizing the exposure to these things. Ausclare, Analytical Research Labs www.arlaus.com.au do a similar test, only for 40 or 93 foods, not for all the other stuff. I believe york allergy testing does a more comprehensive test, but from memory it was in the realm of $600 - $800. I could be wrong, because it was a long time ago I looked, but I remember it was huge. I had the 40 foods one done from ARL for my son, and it cost about $240, of which medicare payed some. We are now in the realm of getting 80% of expenses back due to the family inniative the Howard Govt brough in for medical expenses once you reach over $300 out of pocket, so before the year is out, I am doing all the tests I want done, so we get maximum rebate. You need a doctors signature to get these tests done, and to get the medicare rebate. Most naturapaths can order these tests as well, but no medicare rebate. The other day you asked about testing for methylation - I don't know how to get this done here in Australia. I am assuming this is an issue, due to symptoms, but it may not be, as I can't confirm it by testing. I don't know whether the liver detox profile will shed any light on this one. Caz
  14. I imagine they are starting to market this test kit here first, then it will go internationally. Claire raised some interesting points. We did the spit test, and it showed a reaction so who knows? I will continue to give him the acidophilis supplements. Actually now I am using Lactobaccilus sporogenes. That is the same strain that is in the threelac product others have used. This product is made by Thorne. Costs about $30 Australian (maybe $22 US) for 60 capsules. Caz
  15. Claire, Thanks for the info on synthetic vitamin b. I read my bottle, and it said nothing, so I rang the manufacturer and sure enough they said they are synthesised in the lab. I didn't even know such a thing was possible. I'll look into it a bit more. Caz
  16. We tried a no screens week, but it was too hard. The we let my son use just the lap top as it had an lcd screen. After reading all Claire had to say I watched him while on the computer. Like your son, he hardly tic's when friends are over, or when he is concentrating on something like the computer game. We chatted about it in light of our no screen week and he suggested that when he plays on the computer he is so busy thinking about his next move he doesn't have time to tic (go figure) then he suggested maybe he should be allowed to play on the computer for all his non school waking hours, as then it would stop his tics. Some of these kids are too smart for their own good! Needless to say, I was not encouraging of his plan. He did say it with a smile though. At church my son has certain responsibilites to help with at the front of the meeting. I notice he does not tic at all during that time either. I wonder how much kids can suppress them? Or is simply being focused on something else that makes the difference? Caz
  17. Like most of you I used to assume sugar was an issue, so I religiously avoided things like cordial (coolaid) and gave my kids fruit juice 100% instead, especially my TS son, to take all his supplements with. About a week ago, I eliminated this, and "touchwood" things are on the improve. It was probably the last of the "salycilates" left to eliminate. I thought the juice would be the hardest thing to give us, becajuse of the supplements, but I was wrong. Instead we use the failsafe "magic cordial" which is simply water and sugar 1 cup each heated till sugar is dissolved, and then add half to one teaspoon of citric acid. Cool, and store in the fridge. MIx 1:4 It is very sweet, so it could probably go to 1:6 for kids like mine not used to drinking cordial. This is something I NEVER would have done before because of my percieved sugar issue. Time will tell if such things create other problems - like yeast issues, but for now, it looks like it may be a better alternative to what I used to think was so healthy - juice.
  18. Ausclare, thanks for the tip about betaine - I checked it out. There are two forms of this, one is combined with Hydrochloric acid. It is for those who do not make enough stomach acid. This is the form that I have found in the health food shops here. I believe TMG form of betaine is difference, in that it does not have the hydrochloric acid bit. About breastfeeding: a) are my son's tics genetic? Actually my Dad did alot of throat clearing and a funny face thing. My brother very occasionally does a face thing. He was dyslexic and adhd (before they diagnosed it). My younger brother now has IBS and was ADHD, another brother was asthmatic. IN my husbands family, his dad said bolony when we told him about our sons diagnosis, and said he did funny things as a kid, and grew out of it. After that comment my husband said he used to make a sound with his mouth for a few years, but outgrew it. I guess my son got a double whammy of TS genes!!!!!! or susceptibility (??) to allergies etc Did I breastfeed? My ts son was probably breastfed for the least amount of time, only 8 months. Others have been at least 1 and a half. Now I know about salycilates, I am wondering about the wisdom of breastfeeding. They say that the artificial stuff passes through milk. Caz
  19. I too have breastfed all five of mine, and still they have issues, but like Ausclare, I did not know about failsafe then. We are implimenting this in our family, and I am especially keen to see if this helps settle the 10 month old. He is a grizzly little thing, only cat napped 30 minutes for his day naps till a month or two ago. Fortunately he sleeps ok at night. Hardest thing is to go failsafe myself as I am still breastfeeding, I must do it too. Love the spicy, flavoursome things in life - and chocolate!!!!!. Can't quite manage pear jam on toast for breakfast. I love my muesli, but can't have all the dried fruit now, so am feeling a little sad and sorry about it all. I guess with a baby I should notice a difference sooner than with the older kids. PS We had waffles with caramel sauce and icecream for dessert last night, first time in a long time we have indolged and it was failsafe. We have bagged the casien gluten thing, and are really concentrating on failsafe now. My son's IGg showed no reaction to casien gluten anyway. I am trying to source the enzymes Claire and Jennifer have talked about in case it is not simply an allergy thing, but more an inability to digest these things. We did see a slight improvement on the casien gluten thing, but then, he was only eating such a few things, and they were all failsafe anyway by default, that I am wondering if this was more what helped. Anyway, I am a breastfeeding advocate, but sometimes it just doesn't work out, so either way don't be too harsh on yourself - keep an open mind. Feeding has been such an enjoyable thing for me with the others, but this last time, it has been so troublesome. From about 3 months he would only feed from one side, I have had lots of trouble with mastitis, sore nipples and exhaustion as my 3 year old has been quite jealous. Now at 10 months, he is biting me constantly. I am only contining as I feel it is a better option than formula if we have success with failsafe. Caz
  20. When I think of my own kid, who has dysbiosis (level 3), leaky gut (.54) and probably heavy metals, I imagine that he would have problems absorbing/getting adequate nutrition from his foods, even with supplementation. His CDSA showed no yeast, but tomorrow the nurse at my son's doctor clinic is trying a new candida test on him. It is a 10 minute, while you wait test (like a pregnancy test I think) that has been developed here in Perth, Western Australia. I'll let you know what I think of it after tommorrow. When I think of these factors, I can see how enzymes that break down foods into more "dealable with" type particles would really help. In fact his CDSA said he should take digestive enzymes with meals. I just bought some off the shelf ones from the local health food shop. How all this works, and if it will help, I can't wait to hear about your experiences Claire. About Molybdenum - my son has been taking this for about a year, as his hair analysis showed he was extremely deficient in it. I ran out a few weeks ago, and after reading this, have got some more. The Doctor said it is really good for antagonising copper if you have too much of that. His latest HTMA showed molybdenum was up to the reference range, and there was less copper, so maybe that is helping his moods generally be so much better. I believe too much copper is quite harmful in many ways How the whole sulfication/methylation thing works is becoming to complex for me.
  21. Just had a quick read of this and your other no fenol threat post! I think you need a bichemistry degree to make any sense of this. I guess it would be great if simply taking enzymes alleviates the need for so many other supplements, but I think this is to simple. Why does mercury keep rearing its ugly head? I'll have a good read of this stuff later once the kids are in bed. I need to have a clear head to make head or tails of it. Caz
  22. Keen to hear your hair analysis results when they come in. It is so hard to know what part of marketing companies hype to believe, what is fact and what is simply trying to sell stuff. I hope it worked, but I imagine if yoiu have seen a huge reduction in tics and associated stuff then that is your answer. Caz
  23. Like the others, thanks for raising this issue. Do you know what we need to do here in Aus? Caz
  24. Just something to add about the whole methylation thing. Did any of you guys know that carnitine is simply lysine that has been methylated? I found this interesting as my son really benefits from carnitine, and I have wondered why it works for him. Maybe it is the methyl bit or simply he does not have enough methyl groups to methylate the lysine into carnitine for himself. Caz
  25. After reading all about methylation, I am just wondering if anyone here has had the liver detoxification testing done for their TS kids. My Doctor suggested one way back in January, and I said no, as I didn't think that he had a problem detoxifying. Now, after what I have read, I am curious to know if this may be an issue. I understand that they give you three different substances to take, caffine, asprin (salycilate) and paracetamol. Then they test your urine over 10 hours to see how you detoxify. It gives you an idea of how your sulfication pathways work (very simplistic explanation I know). I am keen to hear if anyone else has had this test, and what the results were. All these tests cost so much money, and we do not want to traumatize our kids. Actually yesterday my son had a blood test, the dr wanted us to check his zinc and copper levels, as well as iron, and to do a full blood count. Well, he fainted! Talk about traumatic! Caz
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