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.