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  1. Hi all I have been reading about the benefits of krill oil as well as those of flax , EPO and borage oil on these forums . We are about to introduce some of this to my sons regime - he has had fish oil in the past and didn't seen better or worse on it but I don't think he took it for long from memory as we were chopping and changing between supplements . I am wondering whether he should take the krill or the flax combo ? Would both be beneficial or should we stick to one only ? Do they have similar benefits ? Thanks so much for your help
  2. it is always reassuring to hear how well your son is doing Chemar. My son is only 7 so I wonder if CBT would be of any use/help to him yet ? he is pretty aware of his tics and can control them when he tries to. I just wonder if it is still too young though ? would there be a certain therapist with certain skills I would be looking for in my research ? thanks
  3. Hi everyone My sons tics have been very mild the last couple of weeks ( relatively speaking ) but in the last week at 2 events - his school sports carnival and today his Easter play - his facial tics went crazy . Both times he was in the spotlight and felt excitement and nerves . Seems so cruel that when he is most being watched his tics would go crazy . It made me very stressed and I just want to know is there a way to minimize this happening that anyone has come across ? Does all the work just go out the window when a child is excited and we just have to accept this or does anyone think that some of the work done will eventually help in this elevated emotive state too ? It's very disheartening to see such an outburst just when you feel you are able to start seeing some links and patterns forming . Would love to hear from others . Thanks
  4. he has had microbial faecal testing, hair analysis and blood work which ruled out everything except for being slightly high in heavy metals. all else appears ' normal'...which makes things harder.....
  5. Hi everyone , I really appreciated your comments and questions last month when I asked your thoughts re the environmental doc protocol my 7 year old son was on . I don't have all the answers to the questions you asked but I do know pandas was ruled out ( this remains open in my mind though ) He completed the course of anti biopics and other supplements I listed atwell as continuing dairy, gluten , processed food free diet and Epsom salt baths. Worsening has continued and now instead of just the one main eye Blinking tic he also has a low grade vocal and a fairly pronounced neck head tic too . We went back to our doc who said right let's try something elseamd he have us another amino acid combo a taurine , inositol and GABA mixture plus another probiotic . A week in and he is worse or just as bad . The doc said that if there is no improvement in one week then switch him over to ' plan b ' which is a zinc and vit b6 combo . There is also a plan c to try out and then he wants us to see what worked best and formulate plan d . I have been reading about pyrrole disorder and wonder if that is our issue? I have also been reading about essential oil treatment being successful anyone have any thoughts on that? I am happy to keep trying all these things but just worry that given we are only trying things for a short time it just isn't enough . Im also keen to try acupuncture but worry it will hurt him. Also worry that the overlap of new things to try wil mean that we don't get time to monitor what did and didn't work over longer periods It's all such an unknown !
  6. Hi there It's almost 2 years on for us ( we have moved slowly ) and I am yet to see enough of an improvement to validate what we are doing . That said - how would I know how much worse he could be if we weren't doing anything ? My parents keep saying to me let it all go none of it's working but I feel he could be worse too at this point . Our main tic is the eye blinking which has been around for 12 months with increasing intensity with no breaks . My son is only 7 so I do worry a lot for the future . So far we have introduced Epsom baths , gone gluten dairy and processed food free , an enviro doc testing period which came back showing the need for a bug rebalance and the subsequent treatment my son is now on which has only made things worse so far. He takes probiotics also via fermented foods and capsules but other than that no other supplemts yet as we needed to see what of the other stuff worked . Next I want to attempt acupuncture. Oh he also does chiro fortnightly too. How old is ur child and what are the symptoms ? I wish u luck . This board is very useful
  7. Thanks all for the reassurance . I know I won't get fast results but the diet restrictions and extra supplements etc are such a lot of effort and work - and the diet part has been for over a year now but no real change in symptoms . It gets disheartening and I guess I'm just wondering how long do we wait before we try something else and what would it be ? Feels like a puzzle that can never be solved . He has just started at a new school and we have mined house so again I'm questioning triggers - but they are so hard to narrow down and nothing really stands out . Chemar yes he had blood tests for pandas too and it has been ruled out . I just want something to work . To give us some hope . Predominant it is severe eye blinking and it is just non stop and has stuck around for almost a year now and is worsening . I wish there was something I knew would help with just that alone. Does anyone think the treatment he is on might be the cause of worsening symptoms ? Do they look like things that might cause initial worsening or are they too unfamiliar to you to know ? I really really appreciate the feedback thank you all so much
  8. Hi everyone , It's been a while since I checked in but I am very keen to get some of your thoughts on the treatment protocol my 7 year old son has been given by our environmental doctor . Just a reminder of the background first - he has most likely for genetically inherited TS - both verbal and motor tics for 2 years now as well as some anxiety issues. Yet to be diagnosed officially . We approached an environmental doctor who suspected pandas and sent a stool sample for microbial (?) faecal testing to see what the balance of bugs etc was in my sons gut . No pandas ( according to result) , no yeast issues , no anything - but a particularly imbalanced bug ratio - more of the bad bugs and less of the good . The doc feels this is a major contributor to neurological issues and has set about rebalancing the bugs with some treatment. This includes : Daily aloe Vera juice Daily PWP amino acids multaflor( E. coli ) for 20 doses Bioceuticals baby biotic bifidum for 2 bottles Nutrition care lactobac for 1 bottle Metronidazole for 10 days. And then we are to report back in a few weeks. As well as this we do gluten and dairy free diet as well as no colours / flavors / preservatives and he has daily Epsom salt baths. I don't know the ins and outs of those medications but the doc seemed to think a few weeks on it and we should see a difference . So far all i can say is 2 weeks into it he is worse rather than better. I am very anxious about it as I just feel that after all this time and $$ we are getting further from an answer . Would anyone think that on those treatments it would be expected to get worse for a while first ? Is this normal ? Does anyone else know anything we should / shouldn't be taking in addition ? Would really really appreciate any and all insight . Many thanks
  9. Thanks so much for your response . So you have found those modifications to be of benefit enough to continue with ? We just find nothing we have tried has made any noticeable difference and the merry go round just keeps going - it is very hard to know what to try and how long for . How did you find out your son had a methylation problem ? Was that bloods ? Our ED has initially just focussed on strep but we wish he would look at other things too to save time. I'm still unclear as to whether or not PANDAS can have genetic roots and run in families or is it just TS . Please let me know how your stool testing goes and what you do from here . Best of luck . Does anyone else have any advice / experience to share on any of this ?
  10. HI all its been a while since I have had a chance to check in but still keep an eye on new posts. Would love to provide you with an update and get your input on here knowing everyones experiences are so diverse and everyones research so thorough ! we finally got our son ( age 6 - suspected genetic TS but undiagnosed yet - 18 month history of mild motor and vocal tics) in to the see a recommeded environmental physician. we waited 6 months to see him. He was very quick so I dont feel like we got the time we needed to ask all of our questions but he seemed familiar with tic disorders and says he usually just treats with supplements and they always work but now he prefers to look at what is going on inside the gut to cause the imbalance and see if that can be treated rather than just supplementing. so we have sent my sons stool sample off for a faecal microbial analysis which apparently will reveal if there are any strep issues as well as a detailed analysis of what else is going on in there. does this sounds like a worthwhile test ?? he has also in the meantime put him on an amino acid supplement as well as aloe vera juice. he continues epsom salt baths and we dont know if they help. we had him on the bontech supps and a probiotic for the 3 months prior to the appt but he didnt feel they seemed worthwhile and would only maybe help once we really found out what was going on inside. After 3 months on bontech supps I have to say there was no change in tics. It is hard to know though if things would be worse without the supps ? its the million $ question with everything we try, He also raised the PANDAs question. I didnt get a chance to ask him could it be pandas though if we have a family history of tics ?? meanwhile we continue to cut ALL dairy and gluten and artificial flavours, colours, additive etc. We are near enough eating Paleo - with a few additions and are slowly working our way towards the GAPS diet as i discussed in a previous post. Not easy however with 3 children and a busy lifestyle. again we havent really noticed a change ( perhaps only an increase) with the modified diet. again....what would his symptoms be like though if we hadnt modified it ? currently his only tics are eye blinking and lip puckering but as they are CONSTANT i consider it to be severe. 6 months now on the blinking with no waning periods. It concerns me greatly as it is so obvious and has been the first time people have noticed something and queried it etc. meanwhile my husband has done a lot of online research and has come to think that gene testing for the MTHFR mutation would be another good step. After arguing with 3 GPs last week he finally got a referral to have the test done. The GPs all felt it a waste of time as it is a controversial test and the results wont ' tell you anything' . my husband feels it will begin to paint a picture of how his body is methylating and that this is important. I havent kept up with his research so a lot I dont understand. other than the above we havent done much else. My son has seen his chiro who is starting to specialise in cranio sacral work at present and she is assessing him weekly. I also have an acupuncturist and homeopath ready to jump in and help if we choose to. I just feel doing everything at once wont be helpful as we cant monitor effectiveness that way. I do feel very anxious to find SOMETHING that will help though as we are growing weary of the no light at the end of the tunnel aspect - which also gets very expensive. we have a referral to a neurologist but feel like that is a low priority as it will only confirm what we know and the only option he will present is medication which we dont want to look at., i would love your input as to what else you would be doing ? which path would you pick next out of the MANY options, are we missing something major - I would love to think we have missed a big piece of the puzzle that will actually make a difference ? i find the trial and error with supplements very overwhelming in terms of what to try/how long for/in what combinations etc so we havent really gone too far down that path. we have increasing attentional difficulties with my son also, as well as teeth grinding at night, bed wetting and mild anxiety. these all seem to be worsening also. He is 7 next week so I just worry that we are heading into the 'worsening' period and that there is nothing we can do. i really really appreciate your thoughts and input and would love any suggestions you may have? thanks so much.
  11. thanks for your response We have never had his eyes tested. Maybe I should do that to be sure. I am sure his classroom has fluro lights. We dont have any at home. Thats what I thought re bonnie supps - maybe it is an intial increase. not sure how long to try them before I cut them out. do you think if we cut them the increased tics would subside or do some people find they trigger a permanent increase ?? oh dear. I have an appt with an enviro doc but we couldnt get in until end of October. I am hoping he has answers for us but also need to be realistic. I am wondering if acupuncture would help with his eyes. so many options - but none of them really present as any more 'amazing' than another and they all cost a fair bit to just try out. its very overewhelming !!
  12. Well, we started my son on the bontech/bonnie supps a week or so ago now. Very small dose and we plan to build up very slowly . So far we have seen a slight worsening and definitely no improvement I would say. I know that could be unrelated and we need to give it time and see how we go. my sons particular tic at the moment is blinking - literally every second (with short breaks here and there) - it is especially exacerbated when he is talking/excited etc. It is a really obvious one and kids at school have been asking him about it. Its impossible not to notice and it is bothering him, any idea of what might help this to calm down ? its been going for almost 3 months now - gradually worsening and I would love to think we are reaching the end of its 'run' or if there is something I can do to help him with this one.... at the moment we have cut out everything else other than the bonnie supps and a probiotic. ( in the past we have used a multi, glutathioane(sp??) and fish oil (DHA only) from the naturopath. ) he also has epsom salt baths every second day and a very clean diet - no dairy, no colours/flavours/preservatives. Next thing to conquer - as we build up to GAPS - is the gluten/grains, but that is a hard one, so its taking time. thanks so much
  13. thanks for the replies, I will let you know how it goes. A LOT of work and research involved - now that we have made a start the full extent of it has become evident. It is quite overwhelming. Since starting we have read elsewhere that almond/almond flour can be detrimental to conditions such as TS and other neurological conditions. Given it is a HUGE part of GAPS we need to look at this a little more.
  14. anyone tried this or know much ? thanks
  15. HI everyone, we are looking at going the whole hog and trying the GAPS diet for a while. We have read the book and watched a talk online with Dr Natasha and it just makes so much sense that even if it doesnt help TS it would have to be highly beneficial for many other health complaints - my husband has suffered from 'IBS' all his life of ranging severity at different stages but has never been diagnosed with anything particular. He elminates dairy and most processed food and keeps things at bay a lot of the time, but will have flare ups for no obvious reason. This as well as our sons tics and many other lower level health issues in the family motivate us to try GAPS. It seems like A LOT of work and a huge amount of restriction for the period it is being followed- which is usually quite a lengthy time. I am just perplexed as to why we dont hear/read more on GAPS helping TS ? if you read about GAPS it has treated and in many cases completely reversed the symptoms of many other physiological/pyschological conditions - depression, autism, ADHD, arthritis, asthma - you name it. TS doesnt seem to get mentioned much and when I search there are very few mentions of it being used by TS sufferers. does anyone know any more about this ? has anyone tried it or know anyone that has ? We are really keen but it would be nice to hear even one case where it helped somewhat ?? thanks all...
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