Posts posted by zinto
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 ?
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
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.....
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 !
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
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
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 .
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 ?
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.
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 !!
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
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.
anyone tried this or know much ? thanks
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 for the feedback guys . We are working on diet in a big way . We have a few supplements but it's hard to know how long to keep them up for or if they are doing any good ?
911r n why haven't they diagnosed TS ? What's the hesitation in relation to ? Interesting .
Has anyone tried the GAPS diet ? I have heard its complicated but very successful for all manner of health problems .
Hi everyone ,
Just ambling along slowly in this journey of trying to treat my 6 yr old sons tics - and I have a few qs I would love your thoughts on :
1) what to do about increased tics from nerves / excitement ?? Anything ?? I don't want to avoid these situations but he is definitely worse when they occur and I just wonder if anyone ever found something that helped with that ??
2) would you say that when someone says ' we tried all the alternatives - nothing worked for us' that basically they have just not exhausted the options ? It's such a puzzle and I can understand anyone saying it all got too hard . I just wonder if you think that the puzzle can be solved if you keep going with alternate options / diet /etc or are there really cases whereby no its just got to be ' lived with ' .
3) my son has had a hair analysis come back and say he washing in copper amongst a few other things and very high in magnesium ( he takes natural calm and has eps salt baths ) so we have eased off the mag- or should we stick with it even if the levels are high ?? She has given him fish oil ( just DHA ) , glutathione and a multivitamin for now and said come back in 6 months. He has been on those now for approx 3 weeks , no change yet. - possibly slight worsening . - vocals have started .
3) Our chiro said his head was a bit out of line and has given us a number for the craniosacral therapist . I emailled her and shensaidshe has no experience with the condition but imagines that she would help with him his anxiety , irritability etc . Which may then help tics . Anyone found this ?
Also interersted in acupuncture but not so sure he will handle the needles .
Thanks everyone , would your thoughts x
thanks for the replies. I have stopped giving it to him in case it was the wrong thing. can anyone suggest a good multi to start on? I am still so overwhelmed by supplements and uncertainty as to where to start. also love to get a clear idea of which fish oil or alternative I should be looking for. apparently there is a certain balance of the 3- 6 - 9 ?? to get ? any advice hugely appreciated
Hi there I have recently started my son on juice plus chewables as I had heard it had benefits in some cases for TS patients . His tics seem to have suddenly increased at the same time . Does anyone know if there's a link here ? Anyone else experienced this ?? Thanks
thanks everyone, there are just so many choices it is overwhelming. Hard here in Oz to find a practitioner to guide you through it unfortunately. I am reluctant to try too much as although I know these supplements are natural, Im sure some of them can also have detrimental effects. I dont want to do more damage ! Logismum, have you had any success with that multi yet ? I looked it up tonight and yes it does look very much suited to TS with the inclusions in it....
thanks again everyone
I am probably asking a question I have asked before but just looking for reconfirmation re magnesium. My son is taking approx 3/4 of a teaspoon of natural calm every morning and having an eps salt bath most nights. So far this has seemed to keep things at bay ( well we think it has it is hard to measure) He is 6 and weighs 25kg....should I be giving him more than this - gradually increasing dose or this an ongoing dose ? The reason I ask is he is suffering a bit of a tic explosion at the moment so I am looking at what to start with him.
It is very overwhelming as I read to know where to start in terms of supplements...I have a list of approx 50 that I have read have helped some people. I keep hearing repeatedly that a good multi and maybe fish oil, taurine would be good ? I have had the bonnie grimaldi supplements in the cupboard for a while and was holding off using them until we seemed to need them. Do you think I should just start these along with the natural calm and bypass all the others I have read about ?
Where I live in Australia there are not a lot of practictioners out there with any experience or even knowledge of TS, so to do this under someones guidance is difficult.
We have cleaned up his diet A LOT and on the weekend he had a few parties and would have consumed a lot of 'party food' considering his diet doesnt contain much of that stuff anymore. Sausage sizzle, a soft drink, a few chips, birthday cake, fish and chips amongst other things. Now the tics have increased significantly - I cant help but think it is quite connected. It is a tough gig with a 6 year old - he hates missing out and I hate to constantly be depriving him. but what do you do ?!
really appreciate anyones feedback re natural calm dose and supplement suggestions.tonight I bought a tub of magnesium capsules - it says each capsule contains magnesium as amino acid chelate 150mg. WOuld this be worth giving him with the NC or separately or not at all ?
thanks so much in advance
Hi there have u found this vitamin has helped with ur son at all ? Thanks
thanks for that...
No we dont use a multi at all at mo - Im so confused as to what to get that I just havent got anything - are there key ingredients/ratios to look out for ? my son is almost 6 so it would be a child-friendly one needed.
I am assuming then by your link that you think Bontech still running ? I couldnt reach them via email and wondered if site is still current. Would those supplements be a safe start do you think? I am in Australia so unsure of what I can get here that is equivalent.
Chemar would you say then that the flaxseed oil is a better option then ? or should I try fish oil and see how i go ? again is there one I should look for - so many seem to have flavours added and I have read about getting the balance right with there ingredients also....again I havent worked out which is best so have put it off in fear of making him worse.
couple of other qs:
1) has anyone noticed a spike in tics with the intro of magnesium ? we have done eps baths and natural calm for a week now and he seems a bit worse. I know this could be unrelated but wonder if inititally i could expect an increase due to the detox effect of mag ??
2) can i mix natural calm into any drink or does it lose effectiveness ? I have put it in water and the kids hate it we just have the plain one as I was trying to avoid flavourings again....could I mix it into a smoothie/drink or something else to mask the taste ?
3) how long until people generally see improvements with magnesium ? I am conscious of not introducing too many things as of course then I wont know what is working /not ...so want to give each a thing a good go on its own...despite knowing that for most people it seems to be a combo of things that end up working and it varies between people. certainly not a quick fix is it ?
I am willing to do what it takes though, slowly but surely to know I am giving him the best shot at this not becoming a big part of his life going forward.
I cant thank you enough for the responses and advice. huge reassurance in worrying times, thanks
I am slightly overwhelmed by the range of supplements people suggest for helping TS. we are doing epsom salt baths and natural calm....but I want to get a good fish oil and any other major tic redUcers. does anyone know if bontech supplements are still running ? I would like to order some but I cannot get in touch with them. Anyone have any idea ? thanks so much
Krill or flax. , borage , EPO ?
in Tourette Syndrome and Tics
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