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Everything 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,
  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
  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
  4. Hi I've only found magnesium to help - reduce the tics. Havent tried natural Calm but he takes Floradix liquid magnesium every evening before bed and Mag flakes in his bath every other night. Might be worth trying to floradix if you want to avoid the other compunds in the Epsom salts. HTH x
  5. Thank you. I will definitely try emailing then again x
  6. Hi Vvny, I've been trying to contact Repreeve too. I emailed a while ago but hadn't heard back figured they weren't around anymore.....guess its worth trying again. Hope it helps your son. x
  7. I'd mash bananas. I give my kids low sugar diets - not sugar free yet but getting there! I use either coconut flower nectar or xylitol instead of sugar and never put in the amounts stated in recipes - I usually half the amount.
  8. haha just seen realised you're from uk too!
  9. 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 rem
  10. I emailed Repreeve straight away but haven't heard back from them. Are they still around? Thanks for the Uk list. I will try and look some up.
  11. 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 ap
  12. 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 beca
  13. opps not Daniel Geller - got muddled up with all the Dr. i've looked up so many seem to have the name daniel- anyway I suppose its irrelevant now
  14. 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 speciali
  15. 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?
  16. 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 m
  17. 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 muc
  18. 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? x
  19. 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 dis
  20. 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
  21. 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 t
  22. 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
  23. Hi Juwayriyah, I read your other posts. I'm so pleased its helped your son & thank you for sharing the info. I really do hope it continues to help him! The problem is I have no idea how to get hold of this herb in the UK. Any ideas? thanks, T.
  24. 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
  25. 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 w
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