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Tiger last won the day on December 4 2014

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  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. 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. 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
  6. 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.
  7. haha just seen realised you're from uk too!
  8. 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
  9. 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.
  10. 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 . Tiger x
  11. 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
  12. 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
  13. 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. Thanks.
  14. 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?
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