marina

Wow Claire What a wonderful writer you are. I think you exactley encapsulated all my thoughts and conversations in my head, so clearly. Yes I agree with you. I think the bucket finally went down to a manageable level so that symptoms aren't obvious. I have slowed myself down, and testing things one by one, but I don't think it quite works that way at all. It's more likely the combination of things. That being said, eye blinking has slightly increased tonight, and Stef our eldest is displaying his silly behaviour after a weekend which included quite a few food transgressions. With him it is always a delayed reaction of a day or so, with symptoms diminishing after another day. Stef is keen to get back to our normal way of eating especially seeing that he has an exam coming up. Matt just enjoyed all the chocolate! Claire I will never forget, that screens are part of his major triggers when his neurological system isn't functioning right. That is why I posted. The improvement just wasn't a waxing waning type effect. It was so obvious that the improvement came because of screen removal. Yet here we are with him being now being able to tolerate CRT screens AT THE MOMENT. It is important for us parents to know that there are key things we can do to help our children. You comment about seasonal allergies is something I will keep in mind. Stef last week had IgE testing for grasses and pollens which will give me a clue. I really don't feel we are out of the woods with Matt. Merely on a journey of discovery which seems to have many unexpected twists and turns. But hey, isn't it great to have been able to say to the specialist, that we have definite answers to what helped. Really I felt that I was the driver and that maybe she could learn a little bit to help others. Claire it's so nice to have you back. Marina

Hi all Just an update from us. In the last few months we have been restricting amine type food (those on Bonnies list), having no preservaties or additives, and limiting milk to one glass per day. This in additition to not screens have eliminated tics by 95% and totally eliminated the obvious neck jerk tics. MY view was that the screen elimination was the key. However, for the last 2 weeks we gradually introduced all screens and notice only some eye tics if he watches in a dark room. He still hasn't played any games (That trial is scheduled in a weeks time). This is contrary to what I expected. This last week we have introduced more foods such as tomato and YES unlimited chocolate easter eggs, and tics have not reappeared as yet. Hope it stays that way. Milk is still being restricted as are all preservatives etc. Don't know what's going on. I'm posting this only to share information, not because I feel that screens or foods are are not triggers. I do. When tics were at their worst, the screen elimination was the most helpful thing we did (thanks to Claire). The improvement was obvious. Could it be that tension is the most significant trigger, and that those issues have been resolved?? Puzzled. Marina

Hi Dara Sorry for the delay. From what I've read, an osteopath although not exactly the same, work in a similar way to a chiropractor. Your observation about the shoulder is exactly what would happen to Matt. One shoulder was obviously higher, and is now one of the first signs I look for, before asking him to do his stretching exercises. I think it was due to all those muscles tensing and somehow locking. I can totally understand you hesitating before trying one more thing as I feel I bombarded Matt with a hundred things at once, however it may be worth a try. In our experience, the earlier treatments when the osteopath worked on his neck brought instant relief lasting about 7 days, whereas the last time he concentrated more on his back, bringing little improvement. Hot showers and an ice pack over his shoulder also helped. At the moment Matt is OK but I'm getting confused as per my post to Claire. Yes what a rollercoaster! Marina

Hi Claire So lovely to hear from you again Claire. I won't be able to get to Sydney, but will look out to see if the testing comes to Melbourne. At this stage, I'm more interested for my eldest, who today had blood tests for IgE food testing & other. He has started a vitamin trial, but after 4 days I withdrew the Efalex as it obviousloy had a grumpy negative effect. This effect to Efalex often reported by Failsafe members, and is thought to be a reaction to amines from the fish oil or salycilates. I know he reacts to both. Matt I'm glad to say is at the moment almost tic free (some eye tics), but the results are so confusing! As you know, lights and screens were a big trigger, however for the last 5 days we have again trialed screens, and no symptoms. My only thought is that there is an interactive connection with foods, possibly milk but I'm not sure. Obviously I'm delighted that he is better, but at odds to pinpoint what it going on. Last week he had a obvious reaction to spray deodorant, and to foods eaten in a Home Economics class when he sampled all the home cooked foods brought in by the class. At a visit to the Royal Childrens Hospital last Wednesday, the doctor ordered IgE and strep blood tests. I was so relieved that she took it seriously and actually complimented my (OUR) efforts. Her thoughts are that foods act as an additional stress on the body, and when it is totally overloaded, the tics appear. She however thought that stress and feeling anxious were the primary triggers, and that other factors (food & screens add to this stress level). Hope that your back posting Claire as we have all missed you. Ausclaire & Caz I would love to hear from you both. Marina

Hi Dara I've read your posts with great interest and am so glad you had a sustained period when Karl's tics were greatly improved. If you got there before, you will achieve it again. It does sound like the gas leak might be a factor, but the screen test is certainly worth doing. So far, for our son it has resulted in the biggest improvement, going from near constant eye, and neck jerk tics to nothing after 10 days of no screens. Just to give you some encouragement, there was no noticable improvement for about 4/5 days, and then dramatic improvements daily. So keep on going. With the anxiety issue, Matt's tics also get worse. However I suspect that he was more than a little anxious with the obvious improvement without screens, and all the implications that this might entail. Life without screens for a 12 year old is hard to handle! Nevertheless the improvements kept on coming! Hoping for your good news over the next few days. Marian

Hi Claire I can't believe it. I've had almost finished a very detailed post to you and with a flick of a button lost it all Will try to start again. Firstly, yesterday and today (Monday and day 11) no tics visible!!! We have not been able to achieve this before without the osteopath treatment or as an unexpected result of the anaesthetic after his operation. So really congratulations to you Claire for all your research and encouragement on the photosensitivity issue. Even Matt is admitting that the trial worked, and has moved on wanting to focus on how much he can tolerate. He will no doubt strech his tolerance level to the limit! Claire I haven't asked him the tic vs restriction question, and won't. I handled his reluctance and dismay by trying to be totally honest. The positives were that at least we will know the answers to why he tics, and then work out solutions so that he is not so vulnerable. I promised him it would not be a cause of no screens forever. I fully intend to keep my promise. I was also quite blunt, that this was a big health issue that we should try our hardest to resolve together, otherwise the problem could escalate and that alternative treatment suggested by doctors could possibly involve drug therapy. I must admit that I am so proud of his tremendous effort at not only sticking to no screens, but also to diet restrictions in the face of enormous temptation. eg: the teachers have been rewarding him with lollies etc for great work. He doen't want to say he can't accept, so the lucky receipiant has been his brother, who strangley enough is getting very moody lately! During the trial I tried to keep all other variables stable with a few transgressions. eg: Food. Cleaned up his diet, Therefore no artificial flavours, preservatives etc.. Milk limited to about 1 large glass per day, and limited any high natural chemical foods as per failsafe guidelines. eg: Although he ate tomato slices no concentrated tomato pasta sauce. Although these restrictions prior to no screen did not eliminate tics, I have noticed that sometimes food aggrevates tics. eg McDonalds with chocolate thickshake obvious trigger. However on Day 4 of our beach trip(Greatly reduced screens) he improved greatly even with a nachos meal the day before and a lolly feast all morning. So go figure. My thoughts are that he can tolerate salycilates, but may react to amines(foods on Bonnies list) and some additives such as flavor enhancers. Also removing the primary trigger, means the bucket not so full. Supplements. Although I meant to continue the Muscle-eze, I must admit that I have missed giving it to him on numerous occassions. My subconscious trying to eliminate anything I may be wary of. Not very scientific, but totally understandable to other mothers. Latter I wish continue supplements, but will purchase the various vitamins individually, and introduce slowly. Still his tics were present before and after the supplement without significant improvement until we started no screens. Exercise Big improvement in his previous exercise trigger. On Saturday during basketball, tics improved by about 80% from the week before. Yesterday he played golf, and no tics at tennis today. Last week tics were triggered during the tennis match. Osteopath Other than our last visit, osteopath treatment would result in immediate massive improvement lasting 7-10 days before symptoms gradually returned. I initially blamed the supplement for the lack of improvement on our last visit, but now believe that the cause was that the osteopath focused more on the tightness in his back rather than neck. Usually the improvement is instant in that he walks out of the room tic free. I'm glad we postponed our visit, or it would have been impossible to identify lights and screens. Claire seeing that the osteopath and anaesthetic both worked for Matt, could it be that the mechanism for some or many tic symptoms is a continuous contraction and tightening of muscles , as a response to not being able to handle the flicker, graphic visual input, which then in term aggrevates key nerve endings??? I also find it interesting that the foods Bonnie mentions are all high in amines. In failsafe these are most commonly reported as evoking the angry aggressive response vs silly behaviour. Of course other foods such as dairy or gluten could also be implicated Matt does not display any angry aggessive response but I wonder if they have the effect of tensing his muscles. Only my thoughts. What next?? Wasn't sure whether to test all screens full bore to see provoke reaction or start LCD screens first. Like you I was worried that if it was a build up of several weeks, maybe Matt would loose the connection and blame something else. Went through the pros and cons with Matt. He said he couldn't stand a full detox after unlimited screens over a few weeks, so we will start more slowly by introducing LCD. Matt wants a detailed plan of action. eg: 1.Reading, writing and watching movies on LCD screen for ? hours for how long. 2. Games on LCD 3 Normal TV 4.Movies. Any ideas? Matt would like it a little on the liberal side. Doctors appointment in March I will keep the appointment at the Royal Children's Hospital in March armed with my results so far. Hopefully they can assist with further allery testing and pyroluria. The worst they can do is send me away and classify me as a overobsessed mother. Been there before, and like water off a ducks back. Again thank you, and I think we can now safely add to success list! Alison Sue Dengates cookbook has this gluten-free flour mix that doesn't contain soy. 1 cup brown rice flour 1/2 cup potato flour 1/2 cup tapioca flour 2 ts xanthan gum from health food stores. Substitue 1 cup of gluten-free flour mix plus 1 sbsp rice bran for one cup wheat flour. For self-raising add 2 tsp gluten-free baking power. I haven't tried it, but if it's in Sue's book I guarantee that many have with good results. Another treat that I make on a regular basis is fruit crumble. I use fresh or tinned pears and often mix other fresh fruit such as nectarines etc. For crumble mix I use one cup of oatmeal and wheat flour combined (you could use gluten free), 2/3 cup sugar, & two tablespoons dairy free margarine (margarine without preservatives) Bake until topping golden. Great packed in containers for school lunches. Don't envy you, but keen to see your progress Marina

Hi Alison Keeping my fingers crossed for you that it is just a tempory cold setting things back for now. At the back of my mind, I do think that perhaps by cutting back all dairy, gluten and eggs, maybe he is eating or drinking more of other substances which are affecting him. eg: a lot more juices which have concentrated amounts of natural food chemicals. With Stef, it was definetly salycilates, amines(which are most of the foods on Bonnies list), msg, preservatives etc. Milk did not affect him, and although I think wholemeal wheat products affect him, he is OK with white bread. Many in failsafe found similar results. A huge problem though was a preservative in bread commonly used in Australia. Stef with these chemicals would pretty much be a textbook model of the reactions you described in the book you posted about. You could see the enormous changes in his writing, pictures, etc. We came across a school photo of when he was about 8, and the pale face, with black rings around the eyes, with a sullen expression was quite a reminder of the changes that have taken place since. I hope it's comforting to know I my dairy allergies did improve, and that your enormous workload may one day reduce. At around 12 I would get enormous hives all over my body every morning at about 10. So bad that I often couldn't open an eye, or walk because on the swelling under my feet. The attacks would generally last 2 hours, after which I would be exhasted for a few hours latter. Strangley I would also get the hives if I was cold. Even with swimming in the Aussie heat, I would have to quickly dry off, or I would get hives under my wet bathers. An allery specialist worked out the milk after a one week elimination trial, however it didn't show up on any scratch or blood test. I think I did have a series of injections which did improve the milk allery. I now have no problems with dairy, but am careful not to totally overdo it. With Matt it is looking like photosensitivity is one of his main triggers, but I have been careful limit dairy and eliminate artificial ingredients while on the trial. I know that a McDonalds meal on our way to our holiday set his tics off for the rest of the day! I do suspect that with Matt, salycilates are oK but that amines (foods on Bonnies list are suspect) He is on day 10 of no screens and he has improved about 80-90% Yesterday at Basketball, he did tic, but only for 20% of the game rather than 80% of more prominent tics the week before. So far the results are amazing, but will have to work out a screens testing plan soon at his insistance so that 1. He is totally convinced that he is affected, and 2. To work out if he can manage alternatives like LCD screens. I think he wants the trial to fail as much as I want it to work! Marina

Hi Chis Firstly, how impressive to see a 15 year old doing such a great job in trying to help himself. I have a 12 year old son(almost 13) who is on day 10 of the no screens test. Until day 4 he really did not show any improvement at all, but he is now about 80% better, so I urge to to try and keep going a little longer. Another thing I noticed independently from the screens for my son is that his tics get much worse with some takeaway foods. I haven't quite worked out exactly what ingredients yet, but I know that a lunch of a McDonald chicken burger with fries and a chocolate thickshake affected him for the rest of the day, with a very prominent neck tic. Now the problem is it could be one or a number of things in that meal that caused the reaction. eg: the preservative in the roll, chocolate, msg in the chicken mix or spice etc. How baffeling that eating two packets of lollies another day caused nothing. So while doing the no screens test, I've just stuck to a basic natural diet, so as not to confuse the results. I agree with Claire that you should also look at food sensitivities. As a first step, maybe no takeaway for a week or so to see if this helps and Carefully check the labels on biscuits, chips and bread to avoid any artifical flavours, and preservatives, msg etc. I know one of the biggest food sensitivities in Australia is a preservative commonly used in bread. I would also especially be wary of the energy drinks. Good luck Marina

Just left for a while to get the boys off to bed, and noticed Matt's neck tic re-appear Hope it just that it's the end on the day and he is tired. Marina

Hi All It's Wednesday night (day 6 of no screens) and our Friday afternoon appointment at the osteopath looks like it will be CANCELLED for now. Matt has improved by at least 80%, even though he had 45 min of computer lab on yesterday and 30 minutes today in Maths. The improvement is amazing. Some neck tics still there but not very noticable. A far cry from how he was last week. I first noticed he was better on Monday, although he did tic during a tennis lesson. Last night it was rather impossible to tell. Matt came home to tell me how much better he was DESPITE the computer lab session. His thought was that he had passed computers because he didn't react to the 45 min computer session in class. This led to elaborate plans to fix the playstation, with a marathon TV, computer session planned at the end of the trial ! My explanation of the cumulative effect, and suggesstion of extending the trial to see how much better he could get, did not go down very well. He stormed off to his room to read for the rest of the night refusing to speak to anyone. This meant that I only saw him for about one hour, as I had worked late. Not much time to observe. However, I did notice that even though Matt was extremely angry (not at all his usual self) he did not tic with the additional stress! Happy to say that today he came home happy, agreeing to an extra week. It's so hard when you are almost 13 and have computer and games as your passions! So Claire it seems like screens is the big trigger after all. I say seems only because I'm so scared to declare it a success, just in case the symptoms come back. It will be interesting to see how this next week goes, and to observe how he reacts during basketball etc. What are your thoughts about speaking to the teacher about no screens at school next week. I haven't done this so far, so Matt doesn't feel different in his new school with new friends. Not going to the canteen makes him different enough! Thank you Claire and everyone else for all the information and support. Claire, I'm going to read all your posts on photosensitivity. What do you make of the success of the osteopath treatment? I've learnt so much in the last few months. As always other parents have been my biggest teachers. Who else but a parent could possibly give and research so much to help their child despite the utter despair and confusion at times. Please, please let these improvements continue! Will keep you posted Marina

Claire Just on finishing 3 days of no screens. No great improvement so far but after reading Susan's post, it is still early days however some interesting observations. Claire, you have a way of reading my mind, I'm sure. The last few days I've noticed that whenever Matt is more physically active his neck tic is worse. Yesterday he had basketball, and the tic increased. I put it down to the bright lights or competition. However this morning (Sunday) we went for an hour walk and again his tic got worse. To me it seemed that everytime he is moving, it's as if his head is unsupported, and the neck tic starts (no other eye blinking etc). His left shoulder is obviously much higher as well. To the point where I feel like pushing it down. While sitting, reading, or playing a board game, it's far, far better and sometimes gone altogether. I really don't quite know what to make of it, and was surprised when you also mentioned that your son would get worse while playing soccer or jogging. As I said you seem to read my mind. Also a boy in the next street who is the same age and has previously been diagnosed with Tourettes, went to see our osteopath after a friend told her of our success. Apparently she was happy after her visit, and her son said he felt much better. Don't know any other details, but our common friend is inviting us both for a coffee so we can meet. Comparing notes will be interesting. Will keep you posted. Marina

Hi Claire and Alison As usual great advice. I did think of that, but in two weeks they are off to camp, therefore even more waiting(not knowing if it was camp food etc), and plus the panic part of me wanting to do everthing at once is not totally under control yet. The urge to book 3 sessions of osteopath treatment, stop the supplements and go back to revisit failsafe diet all at once is overwhelming. With me under control, it was either osteopath now and wait another 3 weeks to start no screens, or take the opportunity while Matt was willing to go with it. I held my breath while I waited to see him walk down that school path after school, and although things looked promising he complained that he felt worse. He immediately did the hot shower, followed by ice packs and felt some relief. As I said this morning he did start ticing while carrying all his books to school. Could it be that this is what is aggrevating or as you the school enviornment. He had no computer work today, and the rooms are quite bright with natural light. It is now Friday night, and I had thought that if I see some improvement on the weekend, that I might contact the school to see what I can do about computer lab for next week. Not sure how to go on that one yet. Matt however is coming home bright, very happy and enthusiastic. At the moment he is at the tennis court with his day, enjoying that sport is now OK. Claire I'm so glad that your son is much better and thank you for your prayer. Marina

Hi all I tried to post back a reply yesterday but an error in the forums database meant I lost it all. Probably best as it was a rambling, confused post which is a great reflection of how I feel. Alison what terrific news. It must feel great to have something to go by. What tests were they as it will definetly be on my list to do? Matt came home from his first day at high school worse. He brought it up himself and said it got worse when he was outside. Grasses??? As we talked about the day, he mentioned that he had an computer class and PE in the gym (fluro lights). He didn't seem at all stressed, and came home excited about all his new friends, teachers and experiences. HOWEVER, his favorite friend's dad apparently sells games and electronic equipment! Also Paul commented that all the boys could talk about was games. (the boys are in the same class this year) He being more of a book worm was concerned. Me too! The mum watch has shown me that he blinks much more when watching TV. Paul has also commented on the blinking, especially when Matt watches tennis(amazing that he noticed). Matt and I had a chat, and he has agreed to another one week screen free which started last night, in order to have a define once and for all. He was so great about it, and planned heaps of alternative activities, that I immediately doubled his pocket money this week with a further reward at the end of the week. I saw your posts on dairy trial latter, but recently we had eliminated it for 4 weeks. I'm also suspect of the combined supplement (few questionable ingredients) which we have now used for 8 days. Matt however wants to continue it for the screen trial so as not to confuse the issue. For the same reason I will for now keep the one glass of milk per day. I read your posts afterwoods. This morning I noticed him tic while carrying a heavy load of textbooks, so it could be more of a structure thing that the osteopath will help with. He is scheduled for a visit at the END of the no screen week, although I am so tempted to bring it forward. I am so sick of what if it is this, what if that but know that with persistance we will get there. Claire Milk thistle I believe was a key supplement that helped me. I can't remember the dose, but it was practioner strength and combined with garlic. Previously I had been on so many vitamin and althernative treatments to no avail. It works as a powerful liver cleanser/restorer but don't know of its role in adrenal function. I don't know of any risks associated with it. Changing my diet was also a big key but it took ages to find out answers. The WORSE thing I ever did was go to an allery clinic as an inpatient for 3 weeks in an attempt to get answers. I wanted to settle this once and for all before getting pregnant again. Filtered water only for 5 days, then testing individual foods one at a time. It yeilded no answers, and I came out reacting to everything, and taking well over a year for my health to get back to the level it was. It amazes me that my health is so good now. It frustrates me that the doctors would never listen to why I thought I got better! Our family history certainly points to Matt having food issues, and certainly his asthma, cough etc have all gone, but I do wonder if I'm over focusing on this. Time will tell, and I'm trying to stay open to all the information. Marina

Hi

Hi Alison Thankyou for your quick reply It's 3 in the afternoon in Australia, and happy to say that today Matt has improved significantly. Fingers & toes crossed! Any improvement makes life seem so much better. He has continued with the stretch exercises, and I have just started a few extra yoga ones. I'll stick with the current supplement for a few more days to see what happens. Efalex is waiting in the pantry shelf, but will postpone introducing it. Yes we have been through very strict elimination diets (no salycilates, amines, msg milk etc). The elimination diet didn't show any result last year and I felt he was just totally stressed and sick of it so stopped. Years ago, when he started eye and nose tics we also did the diet. No improvement for 10 days, after which we also eliminated milk. There was a dramatic improvement after that, however challenging milk didn't bring back the symptoms. He stayed with only minor symptoms until last year. Perhaps milk is an issue, and I at his age daily came out with massive hives which turned out to be milk intolerance. I have now restricted milk to one glass per day. (he uses to have copious amounts of dairy) He hates soya, but I do use it in cooking. You said you have not eliminated all milk products. What dairy is he still on. Food intolerance has been a major issue for myself and my eldest son, so will not be surprised if Matt also effected. Funny how it has each targeted us differently. Stef with behaviour, concentration. Me with hives as a child and then serious ulcerative colitis, liver and other autoimmue problems. Conventional medicine did not help me, and doctors basically told me I would most likely end up with colon cancer and require a liver transplant. Happily that did not eventuate, and I have been very well for about 15 years. The answer for me was food intolerance, and treating my liver with acupunture and milk thisle. I still need yearly colonoscopies as a precaution, but all they find is some scar tissue. I am reluctant to do the path of blood allery testing, because these never showed up results for myself or eldest son. However, testing is probably more accurate now and I may reconsider.

Claire Relief all around! Now that you posted, I remember that Paul had a combined thoat, ear & sinus infection. I was more concerned with the ear infection because if not treated can progress to meningitis. Sinus infections are very painful (lying down and lights make the pain worse). The doctor ordered a short term of nasal spray(in preferance to sudafed) to open up the sinus passages as well as antibotics. Investigate this because sinus can linger and be difficult to treat. He also banned swimming and any air travel for 2 weeks as this can alter air pressure in the sinus area. The gunk that subsequently came out was unbelievable (Couldn't believe that so muck could be stuck there). (luckily Paul only needed one week of antibotics, although the doctor thought a repeat may be needed) Our doctor and I resist the use of antibotics if at all possible, but sometimes they are needed. Marina

Alison Can't tell you how inspiring all your good news is. The whole tone of your posts have changed, and you are now qualified as one of the wonderful teachers! Could you please list all the individual supplements you are using. I am using a combined supplement (with a few suspect ones), but after 6 days things are worse. Will wait a few more days just in case it's a healing crisis. The symptoms are worse even though we went to the osteopath 2 days ago. These have previously always resulted in great success. He again found Matt's neck and back very tight. For anyone interested, he mainly uses ultrasound, massage and manipulation to treat and loosen the Fascia. Fascia is a very thin layer of tissue found under the skin. Baically the cling wrap around muscles etc. My loosening this tissue, muscles and nerve pathways are released, therefore no nerve irritation which lead to the tic symptoms. He also recommends daily ice packs on key points and a series of specific streching exercises. Our 4 previous visits bascially resulted in him walking out tic free for 7 to 10 days before symptoms gradually start to build up. Very DRAMATIC improvements. I was therefore so disappointed that tics still there after our last session, as he starts his new school tomorrow. However Matt does say he feels 50% better. Part of me wants to back to the osteopath tomorrow or Friday for a top up (today is a Public Holiday) rather than our scheduled visit Friday week, the other part wants to wait to see what happens with the supplements over the next few days so that I can build up a clear picture. The osteopath is sure that the cause is food intolerance, and is a bit concerned at the level of magnesium in the supplement, as he believes that to much can cause muscle tension. Another week of no screens is next on the agenda, once I get a clearer picture with supplements. We did do a week on no screens last year, but in day two we went to the osteopath and he walked out tic free, so I haven't got a definite. Pretty sure that it will be a factor, as even when tic free in past years he would start blinking under very bright fluro lights. No screens for this particular almost 13 year old will be a bit easier now that school is starting and I immerse him in as much sport as possible. Basketball and tennis already booked! However I am reluctant to stop screens at school, knowing that there is no way he will want to appear different to the other kids in a new school while making new friends. The tics don't bother him. Matt lately is obsessed with computers, games etc, (Probably because he feels they are under threat!), and for that age group it is a favorite passtime for all his friends. Wish he was a little more like Paul who is happy to spend most of the day immersed in a good book. Our playstation broke last week, and Matt has taken the initiative to ring around to see who can fix it! I haven't said anything so as not to argue or stress him, but needless to say it will stay broken. I am also frustrated with my husband who feel that Matt is just picking up on my tension, and that we should fix the playstation and just back off! Frustration will turn to downright anger on my part! Will keep on going two steps forward, on step back on this frustrating journey.

Claire Looking forward to you posting good news about you son very soon. Glad you are going back to the doctor, as secondary infections can arise very quickly. In December, Paul our twin also had constant very high fever for about 6 days. First diagnosis was viral thoat infection(no antibotics), but second showed secondary severe ear infection which was treated. He too had been very healthy and no medications for over 4 years. Marina

Dear Chemar Today we have just finished day 5 of the Ultra Muscleze supplement I asked you about. So far his symptoms have not improved, and actually deteriorated. Is this a typical healing crisis, and if so how long should I persist, or is it more likely a negative reaction to suspect potassium aspartate ingredient or natural orange flavor? Yesterday morning we went back to the osteopath, and are due back next week. It was the only time that it DID NOT result in a very dramatic improvement in his tics. This has worried me no end, as it has previously consistenly given him an almost total respite for 7 to 10 days. During our visit I showed the osteopath the formula. Although he basically thought it was a good formula, he wanted me to reduce the total dosage of magnesium to 300mg, as he believed too much can have the opposite effect. How confusing! Mind you a few weeks ago, day 6 of the supplement was when he suddenly had a dramatic improvement. It was also our 4th day on our beach holiday (Much reduced screens?). As usual, you advice would be much appreciated.

Dear Marie & Claire Thankyou for the support, I needed the boost and things don't seem as bad tonight. Matt is slightly better today, and I'm going to take that to mean that things are maybe back on track. Even if they aren't yet, I'll focus on the fact that at least we have the osteopath to give relief while we slowly work out the rest. I have so much to be thankfull for, and yes I know we will come through this. Marie your family will too. Claire I agree with your view that sometimes you have to be firm and tough now to ultimately make life more livable latter. Stef our eldest, at times made life quite hard, and hated the diet restrictions, etc .(We started when he was 8). Things were particularily difficult when he was 13 to 15, and we were worried that he would drop out of school with all the subsequent problems that go with it. Last December he finished high school with good grades and is now going on to tertiary studies. He and we were so proud of his effort and achievements, knowing that he had to put in soo much more effort than most. HE GAVE US a huge compliment, saying that he admired us for all the support and effort, for finding out ways to help him, and for being strict, even though he knows that he can be quite difficult and the easier path would have been to just give up. He made the observation, that many of the kids he knows who were similar to him had failed school and dropped out. Hearing those heart felt words from my towering teenager certainly was a special moment. Mind you having just turned 18 means that all is never smooth sailing. However I think that part of the issue is us parents finding it hard to let go of a child that you have had to be careful with each step of the way. Many years ago I read a book by Stephen Covey, called The 7 Habits of highly effective people. One that I always remembered and would think of when times were tough was "Keep the end in mind". Sometimes it's one step forward, two back, but if we keep the end in mind we will get there. Time for a re-read. At the moment though, I just feel spent. Feeling down makes it hard to follow through consistenlty, which is of course what our children need. Usually I only feel like that for a day or so before I bounce back into action, but I am aware that a bit more is required now. Funny that you mentioned that you had signs from God when you needed help. I felt that someone was looking after me today, in the people I met and chain of events. I went to the library, on the chance of borrowing Doris Rapp's book, "is that my Child. Although they had it on their list, it hadn't been taken out in years and it was classified as lost. They were happy to start a seach at other locations, but said it could take months. Well 30 minutes latter, the librarian found me with a copy in her hand, after she had subsequently decided to do a though seach of all the shelves! This afternoon I went to the chemist looking for Calcium citrate. Although there were many other versions of Calcium, Calcium citrate was out of stock, and I left to search tomorrow. Well 10 minutes latter, the chemist tapped me on the shoulder while I was in the bread shop next door, to say that she rang some of their other stores, and there was one bottle left only 5 minutes away! How lovely of her to go to such effort in ringing around and tracking me down. By then I was starting to think maybe I've giving out "I'm desperate sign", but I'm confident that this wasn't the case. Early this evening, at the supermarket I bumped into Stef's Grade 3 teacher who I would very rarely see outside school (yes the wonderful one). We chatted about the holidays in general and she told me how last year she had joined a gym nearby to combat some major stress and health issues, and how it has made such a difference to her life. Plus she looked great. For months my husband has been urging me to join the very same gym and to start making it a priority to look after myself, as he sees that I've become very stressed and down. Quite an extraordinary helping hand today. Claire, no I haven't tried just the LCD screen. Partly me being ineffective at the moment, and lack of routine in holidays. I would rather go another one week of no screens first. Marie and all the mums, look after yourselves as well. Marina

Dear Chemar Your last post made me cry. I took a bit of that HUG. One of the best things about this forum it that it gives you the freedom to express all the emotions, which we often cannot readily do with our own network of friends. I personally feel devastated that another of my children faces a big battle. I also feel drained that having had such a long journey helping my eldest son (with success but also enormous effort), here we go again. You know that you MUST find answers, and cannot stop until you do. But sometimes you feel so TIRED. My husband feels that I am now suffering depression. I think so too. Thank you for your comments re the supplements. I missed listing the 50mg of B6 per serve, and I will include extra Cal from today. I take your comments re the potassium aspartate, and I am also concerned about the natural orange flavour, but will trial for a while. He has been on the Muscleze for two days, and unfortunately his neck tic yesterday is the worst it has been for a few months. Hopefully a temporary healing crisis. I will therefore wait before introducing Efalex. His neck tic was so bad yesterday, that if it continues, I will have to take him to the osteopath before he starts his new school next Thursday. At least tempory relief at a very important time for him, but confusing in my effort to find other answers. Marie, Matt also tries to hide the tics from me, because I'm sure he feels that he is under the Mum microscope. Yesterday I noticed that he would skip and dance past me to hide his neck tic. I feel so sad that in trying to work things out, he just feel more pressure. Definetly do whatever you can while your child is young. With our eldest, so many teachers, friends etc would say he will grow out of it. I would HATE to think of where he would be if we didn't take action at an early age. Claire I went back to read your post and am so pleased at your sons progress. Amazing and more food for thought. I have not as yet been through the blood testing etc, but will start to investigate. I think I was hoping that this would all be a tempory thing, especially after the success with the osteopath. Wiser people knew better, but as usual all the advice is given in such a supportive non-judgemental manner. Marina

Hello everyone I've been reading the posts and wanted to say how fantastic it is to hear about the new success stories. Alison I'm thrilled to hear your progress and thankyou for posting such detail as it helps us all to fill in the jigsaw. Claire and Chemar again thankyou for your time. Your experience is so extensive and I sometimes go through your history of individual posts as I find a new layer of learning each time. I have many layer to go! Here in Australia the kids are still on their long summer break, and they go back to school next week. Matt (aged 12) starts High School and I am hoping it doesn't stress him out. Next week he is also allowed to start sport again after his operation last year, which will also keep him busy and away from screens! Although the break has been fairly relaxing, his progress has been up and down(I think mainly to foods), but I try to look at it positively in that new clues present themselves. A few meals (takeaway at friends house) showed obvious increased tics, but during a day when he ate lollies all morning he had a sudden improvement! Last week he was booked in to see the osteopath after his neck tic got much worse, which I then cancelled after he had made a dramatic improvement all of a sudden!! This was despite eating tons of fruit over the last few days and lollies all morning. Go figure! I looked back at the last few days, and realized that his milk and wheat intake had been dramatically reduced. He was also 6 days into the new supplements So far in his case it seems that salycilates(fruits) don't affect him. Colours (in the lollies) may also not be a problem. But other additives eg MSG etc are now established as definete triggers. Like many others milk keeps popping up. I had also been giving him supplements for a week. Unfortunately these were left behind while we were on a three day beach holiday, and I have just replaced them. The improvement did seemeed to suddenly occur after about six days of supplements so I'm hoping that this will repeat itself. Not sure if it was the supplements or less milk/wheat. Also Claire, his screen exposure was significantly reduced during our 3 days at the beach.. Reduction in screens is the thing he resists the most. His exposure has lessened but certainly not to dramatic low levels. I'm not going to push it now, as it will reduce automatically with school and sport in the next few weeks. If things don't get better I will put my foot firmly down and do another week on no screens (without going to the osteopath during that week) So for now I will try to just stick to natural foods (and include fruit) but avoid milk and foods listed by Bonnie and start supplements again. Chemar armed with Bonnies list and your, I went to the health food shop, and they recommended a product called Ultra Muscleze - magnesium Resuscitation (to save me buying tons of individual vitamins) plus Eflalex. In Australia I haven't been able to find Magnesium Taurate, but can purchase magnesium and Taurine seperately. Muscleze seems appropriate, since I do know that in his case facial and neck tics are tightening of his neck muscles. The osteopath gives instant relief, but it only last about a week before the tics start to resurface. He believes foods are the trigger. I have signed up for a 2 day massage course in February at out local community centre, and hopefully will learn something new! The natropath at the health food store urged me to start the Eflalex immediately because you need the combined effect. My thoughts are to start them in a week after reading that some experience negative reactions. I also have flaxseed oil that he could take instead (my husband takes that). I would greatly appreciate your comments about the contents of the Muscleze to see if there is anything that I should add and your thoughts on when to start the essential fatty acids. Muscleze is low on the Cal, but the naturopath thought the other ingredients to be more essential, and to add Cal latter. Muscleze: Recommended Dose 5g twice a day. Each 5g has Nutritional Info: Magnesium 280 mg (equiv to 2000mg total magnesium chelate) Malic acid 900 mg Taurine 500 mg Glulamine 500 mg Vit. E 80 mg L-Carnitine 50 mg Phosphorous 24 mg Calcium 18 mg B1 25 mg B3 20 mg B12 20mcg Folic acid 150mcg Molybdenum 60mcg Selenium 25mcg Potassium 57 mg Ingredients: Magnesium chelate, malic acid, Inulin, taurine, glutamine, potassium aspartate, d-alph tocopheryl succinate, natural orange flavour, calcium hydrogen phosphate, pyridoxine hydrocholride, l-carnitine bitartrate, thiamine hydrochloride, nicotinic acid, sodium molybdate, selenomethionine, folic acid, cyanocabalasmin. Efalex: 4 capsules twice a day Each capsule: Fish oil (from tuna fish) 294mg Evening Primrose Oil 140mg Thyme Oil 1mg Marie, The teacher experience is soooo unhelpful. We had similar negative experience at primary school for our eldest son who has ADD and is now 18. In grade 2 he had extensive testing with a education psychologist who visited the school principal to discuss appropriate learning strategies etc. The principal comments was that it was all hog wash, and just an avenue for them to earn extra revenue. What a wasted year. Things got better after that year by me networking and being being careful with teacher selection. Interview the school and find out about best possible teachers. In grade 3 he had the teacher that was most helpful helping me find out what worked and what didn't. Some of the infomation she gave we wasn't great, but she was honest, and slowly together that year we made great strides in finding his triggers. (In his case they were salycilates ,amines, pereservatives etc). We found that the foods were like night and day with respect to his mood, behaviour, but that ritalin was the most helpfull for his concentration. We also found out that ritalin on its own didn't work (food overrided the effect) I couldn't have done it without her support, and what we learnt that year has stood the test of time. Glad to say that subsequent to that year he has for the most part been medication free. My twins were finishing primary school last year and our eldest finished high school, and it was an emotional, reflective time as I thought back on all the teachers an our experiences at the schools over the last 13 years. Although she had not been his teacher for 9 years and our paths did not cross for except for hello etc,I wanted to let her know how important she was to his life's path and wrote her a card with a present to acknowledge her help. We both started crying, and she also said how that year also changed her life in that she was amazed at the findings, and it gave her a totally new direction in her teaching. Hiding information to protect you, or assuming what the cause helps no one. To me it is a form of child abuse. Personally in my experience I don't feel you can totally change how a teacher/school will deal with your child. More helpful would be to find more supportive people like the teachers assistant. Ask her and network with others to find out what schools and teachers will best help your child. During primary school for my eldest, we were able to request specific teachers. I don't know if you are able to do that in your schools. I don't say this to ensure that your child is protected from negative people in their life, but merely to give them the opportuntiy to find skills and strategies that will help them live in the adult world. Great help is there as you can see from this forum. Marina

Happy New Year to all I would like to start Matt on vitamins but am a little confused re amounts. I have a mag/ calcium supplement listing 250 mg magnesium amino acid chelate, equivalent to 50mg elemental magnesium and 500mg calcium amino acid chelate equivalent to 100mg elemental calcium. Is this OK or are there different types of magnesium etc. Do I consider the chelate amount or elemental amount . In Australia, I havent found magnesium taurate. How essential is the taurate? Can it be given seperately and is it an amino acid? Also I have a multi vitamin which contains the full range of B's plus zinc and additional magnesium. Maybe I should use a seperate B & zinc so as not to give too much magnesium & calcium. Sorry for all the questions but I hate the idea of giving too much or wrong type. Matt is having minor neck tics since his last osteopath visit. Am hoping to now clean up his diet after all the festivities and start supplements to see if they will go without further visits to the osteopath. It appears the the osteopath treatment keeps him free of tics for about 7 to 10 days before they start to come back. Heather, I'm interested to know how you went with the chiropractor

Hi everyone Ausclare. Couldn't believe the timing on the job loss. Hope everything else going fine despite feral kids & Christmas shopping! Caz, Our sons must be the same age. The twins have just finished Year 6 as well, so like you even more Chrismas functions as usual. But guess what. One week after a further treatment at the osteopath, things are going well. Again, Matt had instant relief from the tics that were building up, and one week latter I've only noticed eye blinking if he has had an increase in artificial stuff. eg: coke Haven't totally banned artifical stuff, but have made sure there are no further binges like the 1st week marathon, and OK alternatives are available. (Salicylates proving to be OK thank goodness) What I have done is kept up the hot showers and following up with 3 minute ice packs on areas of his neck and back (as advised by the osteopath) Claire, I'm now confident that this is working incredibly well as a primary treatment. I am so impressed and relieved that again we have had fantastic results agian. It's not however the trigger. Artificial foods (maybe also wheat) and stress seem to be be the primary culprits (I haven't noticed the impact of screens yet even though there are no restrictions at present, but this may be a more gradual process as you say.) The osteopath is very sure that foods have a more prominent role in this type of reaction, ahead of stress and posture etc. However he did say that he treats his son for muscle stiffness after prolonged game playing! He also said that once a muscle, nerve is affected it can take ages (6 weeks or more for it to settle without treatment) Hence so hard to identify triggers in the first place. I asked him if continuing treatment would help his body not to respond in that way. His answer was that it was more important for Matt to be careful to notice warning signs and what affects him. He can only help in undoing the damage. So far I haven't had to go back, and am hoping that I don't have too for a while. If we get through Christmas and New Year without tics reappearing I will be estatic. Heather. During our session at the osteopath I asked him how the muscle stiffness progresses, causing various tics. 1st point is top of neck with various key spots triggering different facial tics, then further down causing neck tics. He ALSO said that it can cause tingling into his fingers. Matt hasn't felt this but I immediately wondered if its a possible answer to your son's symptoms. Didn't want to suggest it until I was sure Matt improved. I hope this information can help someone. Caz, am also looking forward to reading your book of info. It will be a best seller on this site! Best wishes Marina

Hi Dara Sorry I've taken so long to get back to you, but I am just catching up after Matt's operation. The closest thing to an Osteopath would be a Chiropractor. Last night while searching through the forum I came across the following link about a Chiropractor that another member has found fantastic results with. I put it into favorites, but unfortunatley can not remember who the link came from. (sorry) www.dcdoctor.com/dc/tx/atmachropractic_com/p/fs_healthconditions.html Both the osteopath and anaesthectic (see Aussie thread) gave sustained relief. My conclusion was that both totally relaxed his muscles and subsequently nerve irritation. I plan to followup with further osteopath treatments this week. The relief was instant, and I would encourage you to try at least a few sessions to see if it helps. Take care Marna