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Posts posted by Tiger

  1. Hi from the UK! I'm apologizing in in advance as I cant really suggest much.

    Like you we havent had much help from GPs/paediatrician and NHS in general. It seems the mantra is 'do nothing....dont change anything ....dont talk about tics or mention them ......its common....they will grow out of it....'

    It all happened for my boy when he was 5yrs old a while after he had scarlet fever.

    At the time I googled my sons strange symptoms and eventually found that PANDAS ticked all the boxes. GP didnt want to kno, wouldnt do blood tests a referral to paediatrician took 3 months and again he, quote 'wasnt concerned'. I did manage to persuade him to do a ASOT blood test but I ws told they came back normal - however, this is possible with PANDAS. Anyway long story short we were finally discharged from hospital after 4 appointments which spanned 2 years no further into any investigations and all the doctor did was just repeat himself....I actually felt like I was repeating my self too! LOL I'm so sorry I cant point you in any directions. I was so frustrated by the lack of help so I googled and googled. (So much research you wouldn't believe!! - well actually probably everyone on this site has done the same) I carefully studied other peoples experiences and tried a few things to identify the triggers to his tics: Gluten and dairy elimination - result showed excluding them reduced tic frequency. He has been eating gluten and dairy free for 2 years now. He always tics infront of the TV, screen elimination and reintroduction concluded screens as a trigger. We stopped watching TV and using screens although he has no choice at school.

    He gets worse after illness so I try my best to keep him healthy: (I wish i could take him out of school so that didnt catch every bug! floradix multivitamin (he has food/eating issues/OCDS). Magnesium flakes in the bath every night, Floradix magnesium before bed. probiotic daily, soluble Zinc when he is ill. Coconut oil in everything.

    There not much I can do for the anxiety other than be patient and give lots of reassurance - I find his anxiety is the hardest one to deal with - he spirals into depression and avoidance

    The violence, aggression and emotional outbursts; again patience and consistency; along with riding the wave.

    I use tea tree & lavender oil on all cuts to help prevent infection.

    Massage seems to have a positive effect on him.


    Every now and then I hit a low and I desperately try the NHS again but I think my GP thinks I'm barking mad. Anyway, last October I requested a Cunningham panel blood test. Its not easily available but at first he thought he could access it and then decided he couldn't or 'wouldnt'....I even offered to pay for it myself but he suggested a referral to a neurologist instead...I politely asked him if a neurologist would be able to tell me anything new in terms of the NHS attitude towards tics in childhood. He seemed to think that a neurologist would know about PANDAS but i'm not holding out. Anyway guess what still no appoinment given to date. Happy to answer any questions.

    You're not alone x

  2. Hi I'm so sorry to hear this,it must be very difficult and shocking for you. My understanding is limited. My 8 year old has had tics for 3 years. I always have chalked them down to infection I strongly feel he has PANDAS - however, in the UK the doctors here arent up on PANDAS tests and treatment. His tics do seem to flare with illness and I found taking his diet dairy and gluten free reduced tic frequency. Seems to be some connection to his immune system and antibodies being produced in reaction to the food. I've also looked into leaky gut syndrome and how that can cause antibodies to enter the blood stream and attack areas of the brain that control tics. I dont think he is allergic to these foods but is sensitive hence they dont show up in blood tests. I just monitors him whilst removing and re -introducing foods.


    Had you been ill prior to the sudden increase? as far back as 3 months can still produce a reaction. Candida overgrowth can produce tic flares too.

    Maybe you've developed some allergies? You say you have a cleaning company, have you changed any products that you use recently? Could you have developed a dust allergy or been in contact with any mold? i"m just throwing ideas out there. I'm sure you've thought of them all. Had you experience a traumatic event prior? Stress hormones can effect the immune system long term along with brain chemistry. Could you have eaten something different? It might be worth looking into food allergies as I've read that they can develop later on in life especially celiac disease which is a autoimmune response to gluten. I really hope its none of these things and that the tics disappear from you as suddenly as they came.


    Take care, T .


    P.s. Things that have helped my son are: daily oral magnesium and magnesium soaks. Homeopathy and Cranial osteopathy - I had to explore the holistic/alternative approach and the conventional doctors here just say "oh its very common, just dont change anything or talk about them...they'll go away"

  3. Hello


    one of my sons main triggers is TV/screens. After 2 years without TV (well ok maybe 3 films and the odd 20 min show in that time) my husband cant seem to live with the idea that our son wont be able to view a TV again with out setting off tics - so he has bought a LED screen TV. We used plasma before. I'm not convinced this will help. It's probably more complex than just a screen problem it could be due to photosensitivity, visual stress, htz , resolution i really dont know. and I eally dont know overall which type og screen is best when reducing tics....just wondered if there was any experiences documented about difference in tic frequency and type of screen.

    I've asked about TV before and I'm sure someone pointed to some TV threads but i cant seem to find them.........they might out date as there's newer technology out now but anything experience /suggestions welcome.


    I'm holding on to the old TV for a while incase the LED is worse. Tried it tonight (probably not the best time to try as his tics reappeared over the weekend) but the frequency really increased when in front of the LED screen probably not a a fair test as they might have in front of the plasma.



  4. Thanks Wombat its feels good to have some support. I'm sure I'm doing the right thing - I just have the odd wobble especially as he is a 'particular' eater. (I used to think it was down to sensory issues - food textures or tastes being misinterpreted but I'm starting to lean more towards the idea that its OCD/anorexia or associated anxiety in line with possible PANDAS.)

    I try to keep all food groups covered but its hard the only veg he'll eat each day is a quarter of raw carrot and maybe some sweetcorn. I give him a magnesium supplement will look into a calcium supplement too. Seem to remember the the two cancel each other out in someway- compete for absorption - will try and do a bit more reading about it. Yes of course I'll look at the applesauce link although not sure I'll be much help its not something we can buy in the shops here in the UK. I often see it in recipes and wish we could get it here as the is no subsituate either other than making it from scratch. x

  5. Hi ny son has had tic since 2012. I slowly took him off dairy and gluten and noticed a reduction in the tics. So he's been without dairy and gluten for over 2 years now.

    I still get a hard time from family members telling me I'm making him suffer nutritionally and socially and yes whilst I'm able to ignore it most of the time, I still do question myself every now and then, if what I'm doing is good for him .

    I just wonder if this is it for him.....DF/GF for life?


    I havent been brave enought to re introduce either yet to see what happens. Figured I'd start with dairy and would appreciate any advice. I've found the 'dairy ladder' re introduction advice but not sure if this is more geared up for stomach issues. Is it better to be gradual or just start eating as normal again?


    Things is I have a slight complication to this re- introducing as he still will have an unexplainable epsiode of tics (eyes, eyebrows or neck). So my problem is how will I know if its the dairy triggering the tics or just another unexplainable episode.


    My partner uses the unexplainable epsiodes as evidence thats its not dairy or gluten that are the triggers - so adds to his argument that he should be eating them.

    Anyone else seen tics occur even after a long period without and also being DF/GF for the this long period ?


    I guess i thought i had his triggers controlled but maybe they arent the triggers and maybe I am causing him to be DF?GF unnecessarily maybe he is having health and social consequences from being DF/GF.


    So hard to know what to do for the best - my gut tells me leaves as is but maybe being DF/GF for so long would be detrimental :unsure: .

    Tiger x



  6. JenS Sorry I missed you questions earlier.

    he's 8 now.

    Nope so far no one else has commented on his tics and he doesnt seem bothered by them.

    The head flick one is back at the moment. Broke my heart to see it - as he'd been 99% tic free for over 8months! Its so frustrating because just when you thought you'd mastered and tamed all the triggers something random comes along and trashes all of the boundaries - you have no idea which of the previously known trigger set it off or if it was something new!!

    Anyway I've tentatively tried to ask him subtly about the tics. Its so hard because you dont want to draw attention to them or to make him feel self conscious about it. But what he says is either 'its itchy' when referring to the feeling on his forehead or 'it feels like my hair is always touching my forehead' I never comment really other than saying 'oh I see' or ' i understand' again hard to know what to say as you don't want to reinforce or be little anything and make him feel odd- ugh!

    His tics are mainly wiping the forehead, raising and frowning eyebrows or flick head to the right side or a combination of all. Its almost as if he has a sensory memory that causes a muscle reflex memory which he cant regulate. An invisible fringe that bothers his skin so his body takes over to deal with it. The tic itself doesn't seem to bother him but the other things he experiences do - anxiety, poor muscle tone, low self- esteem, food phobias, constant mantra of "i can't' and sensory issues: tags and certain textures etc. These really cause him to meltdown.


    i suppest he has PANDAS or PANS so I try to avoid mixing with people when they're poorly - difficult at school. i try my best to boost his immune system but he's a fussy eater - I'd go as far to say he suffers from food avoidance.

    Treatment so far to date: He's off dairy and gluten - low sugar, low soya. This definitely saw a reduction in tics.

    Liquid magnesium everyday. Magnesium salts in bath every other day, movement therapy, homeopathy, massage with lavender essential oil.


    I'm dreading the high school years as I just dont know if this is all tourettes like - something that is part of him or PANDAS like - something that is happening to him because of something else. feel like I am shooting in the dark really in terms of treatment I just go with what ever seems to work.

    Let me know how you're getting on.

    Tiger x

  7. Hi Shelia thanks for the info.

    Repreeve looks interesting. Its wonderful to hear that people have had good results with it. I'll see if they deal with the UK.

    I cant locate any professionals who could explore assessments for my son. Our NHS professionals arent interested any my son at all.

    2 Years ago I finally tracked down a doctor I heard about who specialised in PANDAS/ OCDs/Tic disorders - Daniel Geller.

    I was so glad to have found him but when I rang the clinic they told me he didnt practice anymore. I felt so disappointed and hopeless after that I gave up of looking for specialists.

    What kind of specialist assess for imbalances & toxicity levels associated with visual hypersensitivity? I'll try and do a search online.


  8. ah yes. its good to have hunches backed up by someone else - thanks Chemar and thanks for the link.

    the dr. at the eye clinic scoffed when i mentioned Irlen syndrome and photosensitivity. He said the NHS (uk) doesnt have money to investigate such possibilities.

    i found private specialist but they said it was best to wait until he was over 8yrs . So being only 6 at the time therewasnt much I could do for him - except avoid the screens. Think I'll arrange for him to be assessed now that he's 8.

    Have you heard of anyone with irlen syndrome having light associated tics?

  9. Hi Chemar - Yes when his eyes ticced 2 years ago he saw seen by the eye clinic. Good vision etc. nothing to explain the involuntary movements.


    Well today i'm less concerned about his reading and more about his tics - its seems they have been unleashed with full force. Feeling sad as I thought we'd manage to control them.

    After 2 years of being screen free ( apart from at school) we'd allowed him to watch TV (the trigger) more recently over the last month.

    We hoped it was no longer a trigger. Viewing seemed fine, he even watched a whole film on one go and then the occasional 5 mins of football. But today he literally sat down on the sofa looked at the football on the screen and boom - eyebrow raising, eye roll, head flick, body twist combo! followed by lost of eyebrow raising and head flicks :(


    Oh just wish there was a medical test for photosensitivity or whatever it is about screens that trigger his tics. Our TV dosent have refresh rates as its plasma so it cant be that????

    I do worry he if this isnt about tics and maybe he has a type of epilepsy. Its seems that out of all of them eye and eyebrow tics aren't very common but maybe no body write about them?

  10. Hi my son is a fluent reader. He has had eye tics in the past but they haven't effected him in any way.


    Since April has been skipping the small words when reading. I just ask him to try the sentences again and then he could read them.I've also notice some tics have come back eyebrow raising tic and eye wobble - but they arent apparent when reading.


    He is aware that its happening but cant seem to do anything about it. He says 'its just something I do'.


    Before I'd chalked it down to either a processing type spurt in his development/ growing etc. and not concerned myself too much about it.



    Its been happening for 2 months now and I'm starting to wonder if there's more to it.

    perhaps its connected to an eye tic of maybe a brain tic - if there is such a thing? His eye tracking is definitely under some kind of stress.


    I do my best not to talk about it but the fact that I keep reminding him to re - read sentences is probably enough to make an issue of it.


    Yesterday he told me that when he reads the words get muddled in his head and he cant say them.

    He also said he doesn't see the small words.

    i did my best to reassure him in several ways one was to state that his reading wasnt always like this and it might go away.

    he said its like it every day for him: at school in, class work and when reading books to himself.

    I think I made the mistake of saying 'its ok..... it'll go back to normal soon'.

    To which he yelled back 'this is my normal! '

    This made me feel so sad for him :(

    bad mum moment.


    I spoke with his teacher today and she finally acknowledges he's been skipping words. I asked if he could be screened for dyslexia but perhaps I'm doing a knee jerk reaction here.


    Just feel I should try and help him. I thought he was just fed up and bored of reading. I realise now why he's not been keen. It's really getting to him and I'm concerned it'll have a negative effect on his passion to read in the future.


    Its so hard to get the balance right, how much attention should we give to this issue....maybe this issue will just go away.......





  11. Hi everyone,

    a couple of nights ago I realised that the tiny cluster of skin tags under my boys chin are actually warts!

    I first noticed the 'skin tags' 6 years ago. I feel terrible now knowing they're warts and that he's had them for so long without my treating them for him.


    I have suspect that he has had PANDAS for the last 3 years but wondering now if he has PANS or even both conditions. Has anyone observed a link to HPV virus and the Pandas/Pans symptoms?




  12. Hi rick your description is almost exactly the same as my sons. We're 3 year into it now and it was very difficult at first for us. We had no support from NHS and still dont. After I pushed and pushed, t he GP. did the norm of referring us based on other symptoms I described: a sudden on set of anxiety and emotional upset along with regression, buy the time we got our first appointment my son was also ticcing with a head flick to the right.


    Its great that you've got a referral to a neurologist??


    The paediatrician that just kept saying ' I'm not concerned about the tic' and dismissed my concerns especially when I mention PANdas, he just scoffed.

    Over the years the tics changed, my list is similar to yours.

    Every time we waited 3 months for appointments only for the dr. to say 'oh just ignor the tics, its very common in children'.

    after 1.5 years of appointments my son was discharged. No diagnosis given. I wasnt bothered really as at the time I didnt think a diagnosis would be much help. Its was the investigative support I needed.

    I myself swade from thinking TS or transient but gut feeling is its not TS, or a transient tic disorder even though 'it' presents like one. I suspect that all a dr would do is say it is either. Strange that he didnt make a formal diagnosis even though my son met the criteria....more than a year + motor + vocal tics.

    We have no family history and there are more symptoms that match PANDAS, so I'm continuing on this route.


    The dr. refused to refer to him to a neurologist despite observing the tics in clinic, my footage and extensive accounts (diary) of the tics. He would not do specific blood tests, only 1 standard routine test on the first visit.


    The lack of support we've received has forced me to take matters in to my own hands & I have tackled all of my sons symptoms with non - conventional methods. His tics have reduced significantly. He's not free of them, they still pop up now and then but only I would notice. I dont think they'll ever go completely until the root cause is investigated and treated.


    I'm not saying its that same for your lad but everything sounds very similar have you read up about Pandas or Lyme? has he been ill recently? We spotted a strong correlation between illness and the tics coming up again.

    My son has never talked to me about the tics nor I with him based on the drs advice. However, my son is very aware that he suffers from something physically, he now has lots of sensory type tics and issues and becomes very frustrated by his body not doing what he wants it to do. It's like he notices a difference between the periods he doesn't and does tic but he's not sure what it is.


    I hope you can find the help you need. To be honest I found mine from other parents with experience rather than the drs.


    keep in touch, tiger.

  13. Thanks so much for the replies.


    I called the GP yesterday and told her about the tick bite and she told me that she'd seen a few adults with complications after tick bite recently and suggested prophylaxis with amoxiclin - i was really surprised this is almost unheard of in the UK.

    its controversial but I'm just hoping its was the right thing to do. I have a feeling its not going to be as straightforward as taking antibiotics = job done......... I'll also have to watch out now for candida issues too.

    I wish I knew more about natural antibiotics I'm definitely going to read up on Stephen's work, the whole family would benefit, thanks llm. I've heard of thyme oil helping with pandas but have havent tried out yet.


    I've looked at those suggested labs thanks again, but they dont seem to deal with UK. I'll keep googling.


    tiger x

  14. Hi


    I'm on a downer now thanks to a nasty little bug!


    My son has had suspected PANADS for 3 years - hasnt been easy cant get tests etc just have to manage the symptoms.


    And now (yesterday) I found a tick on my daughter! All the reading i've done about PANDAs and Lyme is sending me into a head spin.


    It's the 'what if' thats making me worry.


    We're in the UK and antibiotics aren't given as a prevention, so it's a long worrying waiting ahead to see if she gets ill.


    I still have the bug and was wondering if anyone knows any labs i could send it to. Rather than wait to see if she gets ill.

    At least then we could show any positive results to dr. to get her antibiotics.


    thanks x










  15. Hi I suspect my son has PANDAS, 3 years now. In the uk its just not known about by GPs etc. Still trying to find a medical professional who will acknowledge my son symptoms maybe even run some tests and not just chalk it down to autism or tourettes or just plain old fashioned 'growing up' !


    So I try to manage his symptoms the best I can indiviually. I'm never sure whether to post in PANDAs or in the Tics forum, anyway......


    His tics have reduced so significantly since last year but they show themselves to me in little flashes just to let me know they're still there, which always brings me back to my PANDAS theory. Its correlates either with illness or if he's eaten something new/ been to a party where I cant regulate the food. The sensory issues are always there and the meltdowns and regression also fluctuate.


    I've heard that thyme oil can help (help for healing site) . I havent heard directly from the people who run the site but I was wondering if anyone else had heard about this?


    Which type of thyme oil is it? There are a few red thyme/ white thyme .......

    What do we do with it .... ingest or massage?


    thanks x

  16. Hiya

    I've been reading about how Salicylates & amines can cause tics.

    I've already taken my kids gluten & diary free and now I'm feeling worried that I should be doing something about these food groups but at the same time feeling very low about the prospect of creating more food limitations for them.

    I cant find any tests that check for these - has anyone else found these to be a problem?

    thanks, T

  17. Hi my son has always flicked/clicked his tongue in his sleep. Its very had to describe, its almost like suckling but not exactly because it doesn't involve the rest of his mouth muscles or lips.

    When I look closely at the tongue it starts with a quick quiver then ripples/laps rhythmically. (This motion can also been seen on the outside in the section between under his chin & throat)

    As his tongue rubs against either his front teeth or roof of his mouth it makes a clicking or sucking sound. It pauses for about a minute & then start up again.


    I used to think it was cute when he was a toddler like he was remembering or dreaming about suckling milk in his sleep.

    As he got older it'd come & go & I'd hardly notice it - back then i thought its was just part of his sleep cycle & what his brain does to help process things.


    But once he started to show sign son tics when he was 5yrs I'm wondering if this was his first tic.

    Its happens as soon as he finally drops off (lots of sensory/ anxiety issues at bedtime)

    and it occurs pretty much every night all night .


    To me me it seems as if his tongue muscle is being pulled down his throat (causing the quivering) & the tongue muscle is compensating by pushing forward (the rhythmic lapping). It probably isn't - I'm just trying to analyse too much but its definitely spasming in some way, involuntarily.

    i do wonder though tic or possibly some kind of epilepsy .

    I've filmed it & asked several doctors - they just shrug their shoulders and are baffled. One even said it was 'normal' !


    has anyone ever had /seen anything similar?


    Tiger x







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