Hannah C

Hi Amy We Home Educate, we had always planned to do so. My son has a lot of friends and he can learn at his own pace, it's working very well for us. He is a very happy boy, very interested in the world and full of questions. You could have a look at this website www.education-otherwise.org So in terms of coping at school I'm not sure, at G.O.S.H they recommend speaking to teachers making arrangements for 'tic breaks'. I have a friend who teaches primary in Birmingham and I know she has taught children who have tics/Tourettes-I can ask her about it, if it would help. There is also a tourettes website-I know that's not what your dealing with but there may be something useful www.tsa.org.uk Did you say you were seeing a homeopath? Did you find it helpful? bws Hannah. Hi Hannah thank you so much, you have given me masses to go on. Have you any concerns regarding your sons academic progress? Does he also suffer from ADHD or anything? Currently our son seems fine, but one of my major concerns is how he/and the teacher will cope with his tics in september when he leaves nursery and starts more structured learning. I do hope we can keep in touch! Amy I would very much like to keep in touch.

Hi Amy, Our son is 9, his tics appeared when he was six, no one else in the family has them. When they first started it was pretty scary for all of us, he developed a grimace and shoulder movement but quite quickly he began to develop several different tics. Many of them were painful, causing muscle aches some were pretty debilitating, affecting his walking; he was often unable to rest apart from when asleep. They were pretty unrelenting at times. We saw a local paediatrician who was helpful and sympathetic, we stayed in hospital overnight for observation, my son had blood tests and an MRI which all came back good. We saw a Neurologist and she referred us to G.O.S.H at my request. The doctors we saw at G.O.S.H were helpful in that they made it clear to our son that they saw "lots of children like him”, which helped with why me/am I the only person who has this type of question. I had begun to suspect food and environmental triggers by this time but they really saw no relationship other than to say some people believe that there are 'tic triggers'. It was disappointing because we were told that if things became worse then drugs were the only option. After a lot of reading and research we changed our sons diet, we cut out wheat and additives amongst other things. We use natural products and organic foods as much as possible. I have found www.fedupwithfoodadditives.com useful. We use Animal Parade multi vitamins and have been using Flax Oil or Udo's choice Good oil. We have tried Epsom Salts baths but haven't noticed a change. At the moment things are going well, his tics are nothing like they were in the first year, they seem to be more prevalent March-November, which may be pollen or heat. It's another avenue to explore. We try to keep him cool in hot weather and lots of exercise seems to help. I hope this answers your questions, please ask if there are any more. Bws Hannah. Hi Hannah, thank you for letting me pick your brains! Firslty how old is your son? How long has he had tics and has anyone else in the family got them? How long did it take you to realise that they were tics? Does your son have many tics a day? Do they effect all his body or just areas? With our son, he had been doing actions/movements for many weeks before we actually became concerned. I thought he was very active and hyper excitied all the time. It was only after watching a video we had made of him playing last summer that we actually became worried and took the tape to the GP, she immediatley refered us to hospital. We have been backwards and forwards ever since, sent to OTs and Psychiatrists, immuniologists etc but no firm course of action has yet been decided. Which doctor did you see at GOSH? Why were you disappionted? We do not want our son on any SSRIs although i am worried that the tics may be doing some damage as he has them so frequently. Currently he has 20+ episodes of fully body tics lasting about a minute and a half each time. its like he is doing a hyper disco dance with facial grimaces at the same time. Its most disconcerting to watch and almost anything can trigger it. I have made an appointment to see a homeopath on monday and would appreciate any suggestions of vitamins or other supplements. i have now bought fish oils. What other dietry changes did you make? Sorry to bombard you with all these questions, i have not encountered anyone else with tics in the family. I look forward to hearing from you Have a good weekend Amy

Hi Amy, We live in South Wales, U.K. My son has tics though doesn't have Pandas. We have changed his diet and used vitamins and omega oils, and things are better for him, the tics come and go though with less severity. I have yet to find a practitioner in the U.k who specializes in this field, though there seems to be some interest in diet and Autism. There is a clinic run by Robin Pauc, www.tinsleyhouseclinic.co.uk, I don't know that much about him, he's a chiropractor not a g.p, and I think that may make people dubious. It's worth looking at the website though and I have found reading as much as possible useful, I would recommend reading Sheila Rogers book,I have found that extremely helpful. There is a Tic/Tourettes clinic at Great Ormond Street Hospital-I asked our Dr to refer us to it, I have to say for us, going there was a waste of time. Basically we were told that if things get worse they would prescribe drugs,it was disappointing. Though it might be different for you. I have to go now as I have a very fed up son waiting for me, if you want to know more about G.O.S.H or have any questions please ask. bws Hannah.

Hi Jane, it's strange that you should be in Lancashire-we moved from there to here three years ago. We lived in Preston, our son had no tics there, so we are often wondering whether the pollen count or some other environmental factor has affected him, even worrying about mould in the house. I cant think of anywhere that I've come across in the North West that would offer help for you.. no one seems that interested here. Although I have heard of people who specialize in treating those on the autistic spectrum, the costs are extremely high, I am looking for someone but as yet cant find anyone specializing in T.S. Sheila Rogers book has been a massive help to me and I also have a book called Gut and Psychology Syndrome by Natasha Campbell-mcbride which is certainly worth a read, she has some intersting things to say about Candida and makes recommendations regarding supplements. We use Granovita Organic Omega Oil Blend, liquid 3 x 5mls a day (from Sainsburys aprox £7), I have heard Essential's one is good though. Isaac also takes Animal Parade vitamins and every so often Udo's Choice Probiotics-as I suspect his condition may be Candida related. My son has had a flare-up of tics this week which is just starting to calm down, I am going to try him with an Epsom Salts bath and see if that helps.It's good to hear that it's helping your son a little. Do you find exercise helps at all?I read that it does, we do a lot of biking ,swimming and my son skateboards, it seems to help. I feel a bit isolated at times too, especially when people clearly think I'm a bit mad and that food cant have anything to do with it, as long as our son is happy though I am o.k. bws Hannah

]Hi Jane, thanks for the reply..it was really good to hear from someone in the U.K. I think because there is so little time and understanding devoted to T.S here, it does help to talk to people up against the same problems. I was wondering if you had noticed any nutritional or environmental factors influencing your son? I have definately seen these come into play and to a degree things are better for us,although there can be stressful times. So far some of the things that have worked for us include: excluding some foods, trying to keep dust levels low, low sugar intake esp in the mornings, cooking everything from scratch and avoiding e numbers, and lots of exercise.Our son is 8 and we have always home educated so we dont have school to worry about, he is a happy boy with lots of friends, but my main concern is that when he hits puberty things will get worse for him. I have been looking into supplement a.t.m he takes Animal Parade vitamins and omega oils, I am thinking about Epsom Salts baths as a way of absorbing extra magnesium, but like you I am worried about giving him high levels of supplements.Ultimately though I would like to find a knowledgeable,sympathetic practitioner who can help us. We are in South Wales and so far I have found doctors who specialize in the autistic spectrum based in Cardiff and Bristol, I am sure there must be someone who can treat T.S, where abouts in the U.K are you? This site has been a fantastic resourse for us, if anything it really helps to know that there are other people who know there is more at work here than a condition that 'waxes and wanes' for no apparent reason. bws Hannah

Hi, thank you. I will keep up zinc rich foods in my sons diet, and bring this up when we see the doctor. bws Hannah.

Hi Chemar, thank you for your help. Yes we do have Sheila's book and it has been very helpful. With regards to the overheating I think, our son definately warms up quicker than other children, I had read that this was to do with the Hypothalamus and that some people with t.s find they overheat. bws Hannah.