From HannahC in the UK

[Chemar]

Hi, we live in the U.K and we've found this forum very helpful, so far we have'nt mailed. We have a son aged 8 who has been 'ticcing' now for about 3 years.We have had medical checks and have been told that our only option is to wait and see ,if they become hard to handle then we could give him drugs, which of course we dont want to do.We have cut out additives ,wheat, corn and yeast and give flax and vitamins.I was wondering if anyone has noticed the link between body heat and ticcing-my son often gets very hot (after exercise or even on a mildy hot day), which aggrevates his tics. When I mentioned this to the specialist she seemed to think it was'nt important, but I have since read that a lot of people with t.s overheat.I have also noticed that my son has white spots on his nails and am interested in mineral supplements but to be honest I would be scared to give these myself and feel I need to take him to see a professional. This leads to my next question, is there anyone else on this list based in the U.k and if so could anyone recommend an environmental doctor? T.S and tics are regarded here, it seems as something you put up with, the medical profession dont seem interested in diet or environment and this in turn leads to a belief that there is simply nothing to be done. I have never believed this but am feeling very downhearted, I'm not looking for miracles I just want to help my son to have the best life he can.

bws Hannah.

[Chemar]

hi Hannah

 

yes,overheating has been documented as a major tic trigger

 

I know we do have other members here from the UK so hope they will be along to give input.

 

Being summer vacation time, the boards are a lot quieter at present

 

Have you got Sheila's book? Although it sure does not replace the guidance from a qualified doctor, it can answer many of your questions and also give you so much info on the subject of natural ways to treat tics and TS

http://www.latitudes.org/book.html

[Hannah C]

hi Hannah

 

yes,overheating has been documented as a major tic trigger

 

I know we do have other members here from the UK so hope they will be along to give input.

 

Being summer vacation time, the boards are a lot quieter at present

 

Have you got Sheila's book? Although it sure does not replace the guidance from a qualified doctor, it can answer many of your questions and also give you so much info on the subject of natural ways to treat tics and TS

http://www.latitudes.org/book.html

 

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.

[Cum Passus]

Hi Hannah,

 

My son's intergrative Dr. said the white spots were zinc deficiency. Since we started him on the zinc we have seen the white spots growing up the nail until they are gone.

 

Good luck, and welcome nice to have you here.

 

C.P.

[Hannah C]

Hi Hannah,

 

My son's intergrative Dr. said the white spots were zinc deficiency. Since we started him on the zinc we have seen the white spots growing up the nail until they are gone.

 

Good luck, and welcome nice to have you here.

 

C.P.

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.

[Jane_c]

Hi, we live in the U.K and we've found this forum very helpful, so far we have'nt mailed. We have a son aged 8 who has been 'ticcing' now for about 3 years.We have had medical checks and have been told that our only option is to wait and see ,if they become hard to handle then we could give him drugs, which of course we dont want to do.We have cut out additives ,wheat, corn and yeast and give flax and vitamins.I was wondering if anyone has noticed the link between body heat and ticcing-my son often gets very hot (after exercise or even on a mildy hot day), which aggrevates his tics. When I mentioned this to the specialist she seemed to think it was'nt important, but I have since read that a lot of people with t.s overheat.I have also noticed that my son has white spots on his nails and am interested in mineral supplements but to be honest I would be scared to give these myself and feel I need to take him to see a professional. This leads to my next question, is there anyone else on this list based in the U.k and if so could anyone recommend an environmental doctor? T.S and tics are regarded here, it seems as something you put up with, the medical profession dont seem interested in diet or environment and this in turn leads to a belief that there is simply nothing to be done. I have never believed this but am feeling very downhearted, I'm not looking for miracles I just want to help my son to have the best life he can.

bws Hannah.

Hello Hannah, I am also from the UK and have found this site very interesting and helpful although I haven't looked at it for several months. My son is 13 and has had tics since age 10. He also has associated OCD whish at the moment is causing him more trouble than the 'tics'. We have also found the medical profession to be totally unhelpful - only offering strong medication which we do not want to resort to. We are not currently under any consultant as we kept refusing medication they said there was nothing else to offer my son. His tics are much worse when stressed or tired and his OCD routines take up to an hour at bedtime. He can control his tics to a great extent when at school or socially but I feel it must be a great strain for him. Like you I would love to help him in any way - I have read about Bonnie Grimaldi's vitamins but am a bit nervous about giving such high doses. Also he can't swallow tablets! I'm afraid I have not come accross an environmental doctor but would also love to hear from anyone in the UK who has any experiences with one, or with using supplements. Best wishes to you and to your son.

[Hannah C]

]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

[Jane_c]

 

Hi Hannah, I hope that you see this reply. We are in Lancashire, in the North west, and I haven't yet discovered anyone who is remotely sympathetic or interested in an alternative treatment for my son's T.S. I asked the consultant that we saw if it would be possible for Ben to have cognitive behavioral therapy for his OCD which is difficult for him to cope with at times, but was told that nothing is available on the NHS until he is over 16! He was 12 when she said this! We were told to try and find someone privately but the cost was around £90 for 45mins!! So that wasn't very helpful. In the last week I have decided to try him with the epsom salts baths which he has now had three times and finds relaxing. He definitely managed to get to bed more quickly than normal after the baths (sometimes it takes up to an hour and a half with all his tics and rituals!) but I'm not sure if it was just the relaxing effect of a warm bath or what?? Anyway - we'll persevere with this. He has also finally learned to swallow capsules! I found a Vit. B complex 100mg capsule and he has been taking one a day of these. I would like to add flax seed oil as well - do you use a capsule or liquid? My older son is 20 and has dyslexia and poor concentration - he took an omega 3 fish oil supplement for about 6 months and it really seemed to make a difference to his concentration at college. Unfortunately he developed tics (!) - which I have read can happen (he doesn't have TS) - so he stopped taking it. I would like to persuade him to try Flax as an alternative as he has just started university and it might make a difference.

My younger son's tics are much less now than they were a couple of years ago but I don't know why this is. I think he found starting High School very stressful but I don't know if this was the reason. We also try to eat a much healthier diet with as few additives as possible and perhaps this has helped too. It was great to hear from someone else in the UK - it does feel very isolated at times when trying to deal with these problems and work out what to do for the best. I'm sure there must be other members from the UK out there somewhere?!

[Hannah C]

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