Tiger

Thats great to hear Mar, I hope your little boy is doing well I'm starting to learn more about blood tests & intolerance and I think the here in the UK the NHS only offers allergy indicating blood tests (IGe) known as RAST or the specific celiac test and also skin prick tests. I wish they offered the IGg here it might shed a bit more light on my sons tic triggers. My GP isn't very helpful anyway he wont even acknowledge the fact that for some people allergies & intolerance cause tics. His professional statement ' is that tic just happen to some people, maybe they'll go maybe or they wont'....... very informative He wont even refer my son to a neurologists & its been nearly 2 years now. I might look into getting a private IGg done but at the moment my son is gluten & dairy free, will it mean that I'll have to put him back on those foods to get a true results?

Hi thanks for this - just bought a big bag of powder & planning to add to everything, even smoothies!

Hi I think I read some good things about turmeric can help with tics, candida etc on here. Is it the fresh kind (root) or the powdered? Any ideas about how to use it ? Thanks x

Thanks Kim very interesting reading. I refrained from using the Calpol in the end, his temp was gone after 4 hours - so glad I didn't go there.

Hi i know its a strange question. But since my 6yr son has suspected PANDAS (18months ago) he's not really ever had a temperature will illness. When he was toddler I always give him calpol for fever . But now I'm wondering if with the PANDAS perhaps I should let the body do what to needs to perhaps the fever would helping his immune system work things out a bit? Scrap the calpol or keep it for comfort?

Hi - I know its difficult but I would always suggest doing blood tests before changing diet - I think you might have? I made changes to my sons diet & now its not possible to get true test results unless I put him back on the foods We reduced my sons gluten & dairy over about 6 month at first - we also switched to goats milk. The tics seemed to reduce in their occurrence over the same period but I noticed when I cut out the goat dairy & gluten completely the tics went. Its hard to say if it was this because we were doing other things as well, supplements, homeopathy, cranial osteopathy, sensory integration avoiding other triggers like screen viewing........we had about a 4 months tic free (welI I still think he had a subtle tic that only I noticed) but anyway the tics are back full force & I'm not entirely sure why but I think perhaps its because he ate a chocolate bar which contained gluten & dairy or maybe it was because he dad let him watch 40minutes of a video game........ I do feel like I'm looking for a needle in a haystack most of the time I'm so glad you've done the blood tests hopefully they'll give you a clearer idea of triggers. Hope you start to see some changes soon.

Hi Kate No PANDAS diagnosis, just lots of dismissive comments from GP & his paediatrician - they've never heard of it. Yep totally useless. No diagnosis at all, quote: 'well your son was ill & sometimes children take along time to recover, this could explain the emotional outbursts you're observing & tics.....well they happen sometimes in childhood, just ignore them they should go away' Can you believe we waited 6months to hear this.......18 months later with not much change the paediatrician refuses my request for a referral to a neurologist & I'm having to find ways to manage the tics & anxiety with no support at all from the NHS. I truly hope you have more success. Regarding your daughter & her brothers scarlet fever, I've read somewhere that children susceptible to PANDAS can react when people they are close to have strep infections. I've also read that some children has tested positive for PANDAS but have never displayed strep like symptoms, its seems to be a very complex disorder. You might want to have a read of some of the post in the PANDAS section - I find it really useful. `Tiger x

LOL i meant calms ---- anyone heard of clams helping with tics, you never know

Hi Kate we are in the UK too. My son 6, developed irrational behaviour, anxiety, regression, meltdowns/aggressive verbal outbursts & shortly after tics. I'm not entirely sure whats why this all happened but I do keep coming back to PANDAS.....he had scarlet fever when he was 4 it was 3 months later when i noticed obvious changes. I give him magnesium citrate in the form of floradix & magnesium chloride bath salts. I get it from holland & barret when they do the half price offers. This is amongst other things I've given him to help manage the tics. Mostly the tic is just just a subtle body jerk that I only would notice & more so if i'm holding him or he's sitting on me. We hardly see the emotional issues any more unless there been recent illness. I think the mag helps - I think we only see what I call 'flare ups' in the tics (they are very frequent & very forceful) when he's been ill. When this happens nothing seems to help I've heard of natural clams but have never found it in the uk - where do you get yours?

Hi thanks everyone, Just wondering if blood tests do actually show up food intolerance? A friend of mine told me that they only show allergy and that food Intolerance is not something that can be tested through blood. Has anyone done this or do you use the other methods?

Hi Ozimum thanks, thats really helpful, I've had a read of the thread & have started looking, I was hoping to go with someone called Dr. Daniel Goyal apparently he's well known for PANDAS treatment but he has stopped practising The quest continues..... much appreciated xxx

thanks Chemar, thats good to hear about blood test confirming other tests. I definitely want to get it confirmed - looked online but haven't found any blood tests for nightshade, seems it can only be done by elimination. Perhaps i'm just not looking right?

Hi trying to get to bottom of why my son has tics & meltdowns. He's been gf & df for over a year now. We went to kinesiology muscle testing was hoping she'd either affirm the need to keep off gluten & diary or let me know that possible he could tolerate it now. Complete shock when she told me gluten & dairy is not his problem its nightshades. Feel really confused now & guilty because since giving up wheat I've increased potato in his diet! Oh my maybe its not true I do feel a bit skeptical but maybe its because i dont want to believe. I havent seen anything about nightshades & tics before so wonder if anyone else has had an issue? thanks

Hi I suspected my son has PANDAS & showed a paediatrician a PANDAS leaflet. He'd never heard of it & was baffled but he finally agreed to add ASO test to his list of routine blood tests. 1 month later the test results all came back normal. He said that it indicated no recent strep infection & did not want to discuss the PANDAS route anymore. He just said that some children who've had several infections/ ill health take a long time to recover, this would explain the behavioural changes & that tics are quite normal for some children & they usually grow out of them - he wants to discharge us but I've insisted we see him even if its once a year. I have since found out that just because the ASOt was normal its doesn't rule out PANDAS /PANS. My sons still has constant tics, anxiety & meltdowns 2years after having scarlet fever. I'm looking for a PANDAS specialist in the UK who can help him. thank you

Hi thank you so much for your replies. Certainly helps me realise that my first suspicion is still very much valid. It was the behavioural changes coupled with the urine frequency/OCD type obsession of waking & believing with panic that he'd wet the bed when he actually hadn't, that alerted me to PANDAS & then when I read it could follow strep infections plus all the other symptoms, to me it ticked all the boxes. The tics were the last to develop but saying that he's never expressed any hallucinations. I think our main problem is that we are in the UK - GP & paediatrician are absolutely clueless about PANDAS or PANs. The flow chart looks great I could show it to the paed. but I guess what I should really do is find a PANDAS or PANS specialist in the UK but I have no idea how to go about this. Any advice? At times I feel so desperate that I want to rush him over to US & do the cunningham panel but I'm guessing I cant because he's not a citizen. PR40 - I guess I don't feel me sons symptoms are mild. But they do seem to calm down at times. eg Subtle body jolts that only I notice. Its all relative I guess. However, it is still upsetting for me to see him like this knowing it could flare up again like the first onset. In fact its at its worst right now in over 18 months. Just feel like I'm failing at managing the symptoms. Because I'm with him everyday its me who notices the symptoms. His teachers don't see the behavioural change as they never knew him before this & don't notice the body jerks in a class of 30 children. Sometimes his teachers make me feel like I'm going mad. Quote "No we don't see anything." When he is ill or if he's watched TV his tics change & become more noticeable to my husband like the eyebrow raising & frowning, head flicking to the side, arm stretching etc. A few weeks ago I explained to his teacher what to look out for & yesterday she said I did see the eyebrow one once but then it went, & hasn't seen it since. I see all the tics non stop at the moment. Either she's not very attentive or he's hiding them in some way

Hi in autumn & winter 2012 my son had several throat infections that came to a head with scarlet fever. 3 months later he developed behavioural changes & urine frequency / urine issues 2 months after that the first obvious tic emerged (head flick to side) I suspected PANDAS & showed a paediatrician a PANDAS leaflet. He'd never heard of it & was baffled but he finally agreed to add ASOT to his list of routine blood tests. 1 month later the test results all came back normal. He said that it indicated no recent strep infection & did not want to discuss the PANDAS route anymore. He just said that some children who've had several infections/ ill health take a long time to recover, this would explain the behavioural changes & that tics are quite normal for some children & they usually grow out of them - he wants to discharge us but I've insisted we see him even if its once a year. At the time I explored other avenues; like candida (as he did have a lot of antibiotics) or maybe allergies (he's GF & DF) now based on my observation not confirmed by blood testing. But when the tics flare up I always wonder why what I'm doing for him (diet changes) isn't managing them. I keep coming back to the ideas of PANDAS or PANS as a cause, because he does always seem to be ill around the time of the tic flare ups. Could normal ASOT blood results almost 6 months later after scarlet fever really rule out PANDAS? Perhaps i asked for the wrong kind of test. Maybe theres some other kind of test I could ask the paediatrician to refer us for? We go back in January.

Hi & thank you all so much for advice & supportive comments, its really does help. It reminds me that I need to stay strong & keep focussed - I am doing all these things for a good reason, I'm not a crazy cuckoo or whacky! Guess I'm just feeling the stress & strain of trying to help manage the tics - its such a knock back when theres a flare up, makes you feel that everything you've being doing & trying has been all for nothing. Especially with 'an anti everything I do' partner. The head flick & eyebrow combo is back after 18months & unfortunately I cant tell for sure what the trigger was; the Maltesser chocolate (wheat & dairy) that my husband gave him or the 40mins+ of video gaming/viewing my husband allowed - probably a combination of both . I'm just having to put all my hope & faith into the waxing/waning theory. Have to say I'm tempted to keep my son off school this week as he hasn't interested in learning or co-operating to do work, very oppositional infact - last thing he needs is the teacher coming down heavy on him. I think it must be the frustration he feels over not having total control over his body & not understanding why. It must be very confusing to be aware that one day you could do something & the next day you cant. His self- confidence plummets. He doesn't like to try things if he feels he's going to fail. He absolutely hates putting pen to paper to form letters; will often spell thing backwards too; when the tics are bad. Its like theres a massive regression in his fine motor skills & co-ordination. Has anyone else observed these kind of parallel behaviour to tic cycles?

Hi I'm new & its regarding my 6yrs son. To cut a long story short he has had tics on & off for about 18months now. Head flicks, eyebrow raising/frowning & body jolts. I suspect some vocal tics but if find it hard to tell the difference between 'messing about with speech' child behaviours & vocal tics. I read serval posts on here & have experimented with going gluten & diary free. At first I reduced these foods & noticed the tics reduce so I took them out completely. I also noticed him tic more infront of TV so again we've gone TV free for over a year now. We hardly ever notice the tics now unless he's been able to watch TV for 10 mins or so ( the tics come on almost instantly & stay for about a week). Recently we've noticed that dark rooms with disco lights & party environments have triggered the tics. By big question is am I doing the right thing by avoiding the tics? It really hasnt been easy but I 'm doing my best to help him. My children are happy being TV free although I know they loved to watch it. My husband hates this & keeps telling me that they'll start to feel socially different. I'm doing all I can to combat this -eg if the craze is TMN turtles or Frozen I do my best & get them books & toys so that know the characters & storylines, do lots of themed character role play. I'm also trying to be gentle with the diet difference; I still take them to parties but bring my own homemade cakes & sweets to parties, or during Halloween play a swap game with the kids for GF candy & DF chocolate that but again I have my husband telling me that I'm making my kids feel odd. They are very aware that they dont eat wheat or milk & sometimes ask me why - I dont feel it appropriate to tell then at this age yet - I dont want to cause more anxiety to them so I just say 'we're just trying to be more healthy, it might not forever.....' I used to think I was doing the right things, I'm helping my son to manage his tics & get on in life thats a good thing right?. But the constant conflict between my husbands & my ideas of how to help is making me doubt myself - he really make me feel bullied. It really isn't a problem at all to make these life changes, but out of our home 'bubble' it is harder. Its me doing making all the effort & I'm prepared to do it - I've felt I've managed it well for the family, but my husband doesn't feel the same. My son has a twin sister so to make my life easier & so not the make my son feel left out, jealous & self conscious I do the same for both of them - perhaps I'm being unfair? But at the same time she has had bad eczema, wheezing & geographic tongue all her life & since the diet changes they've cleared up! So i justify it by the fact that I'm helping them both. Do I keep going avoiding the triggers or do I give up & go back to how it was knowing that my son tics will worsen? If you know/knew the tic triggers would you avoid them? Tiger

Hi n123, your sons symptoms are very similar to my son . In Dec 2012 my son had what the doctors said was scarlet fever, massive tonsils, fever & rough dry skin it was like sand paper in the armpits & creases. It took him a long time to recover & this is when we first noticed a change in him - he became very anti school, anxious, clingy & a complained of a constant itch back & itchy labels on clothes. Just after he turned 5, in march 2013 he had a pusy thumb nail infection, then a suspected urine infection (when I look back this was probably the urine frequency part of PANDAS/PANs or possibly a bladder tic). Straight after he had 2 fevers in the space of 3 weeks - 3 lots of antibiotics. What followed was lots of changes in his behaviour, it was like having a different boy in the house. Explosive meltdowns, all emotions were off the scale, oppositional & aggressive behaviour, extreme intense bursts of hyperactiviy in the mornings then, slow speech & depressive moods in the afternoon, short term memory issues - patching out, constant verbal commentary of things he was doing/thinking, regression in understanding previously established boundaries, regression in his vocabulary ( it was usually very advanced compared to his twin), lack of confidence in reading, writing ( I think was due to his regression & onset of cognitive issues possibly, perhaps even a thought tic - he was very aware that he couldn't think as well as before & commented on it often - ' mama i cant use the words I want to, poor me. I have a buzzing in my head all the time & its like there's a web in my brain catching & stopping all my thoughts coming to my mouth'). Then in May 2013 we noticed the first tic - head flick, a month later it changed to eyebrow raising/frowning, 4 months later we saw heavy blinking & eyeball rolling. Since then its been the eyebrown tic on & off for the last year. We are still at a loss but PANDAS ticks a lot of the boxes, that accompanied by candida & posssily food sensitivities. I've taken him gluten, dairy & TV free for the last year & its made such an improvement the diet has been positive to his moods & the TV is definitely a trigger for his tics. It hasnt been easy & I'm still looking for professional help, his GP & paedtrician are dismissive & just tell me to ignore the tics & never mention them to him - Of course! Cant believe I had to wait 6 months & that was the only help they gave. They did do ASOT at my request but only to shut me up, I was told the result was normal so to stop exploring that avenue - quote ' ust go away and relax'. We are in the UK too you might know us if you've been in touch with the UK PANDAS group. I've only just joined this site today. I'm always here to listen & share x

Hi I'm new & just wondering how to put the medical history that appears in grey under comments - would save me a lot of time re writing each post thanks

Hi I'm new but having been following various threads over the past year as I've researched my sons condition. I occasionally hear from the PANDAS UK group, but I'm really struggling to find Dr. to take PANDAS seriously. When my DS was 5 he developed an acute onset of PANDAS like symptoms 3 months after having scarlet fever & several other infections & courses of antiboitics. PANDAS seems to be the most obvious thing that explains the changes we experienced. Also the possibility of accompanying Candida & food sensitivities. I managed to get referral to a paediatrician based on the behavioural changes we observed. The dr. did do a set of blood tests at my request he said they were routine so I asked for ASOT. He told me all the test results came back normal & proceeded to shut me up talking about PANDAS. My son is left with tics that seem to be triggered by TV/screen viewing, plus aggressive outbursts. I've found going gluten & dairy free has helped to reduce the tics & anxiety ( my family think I'm crazy for doing this). The paed is being very laid back saying that its normal for some children to tic just ignore them etc. While he's probably trying to stop me from worrying its very frustrating being fobbed off. He isnt interested in finding out why my son suddenly started doing this nor is he interested in the triggers to the tics. I'm wondering if anyone have found a test that points to PANDAS - I feel i need this as proof to back up the changes in diet & lifestyle I'm making. I know that to test for gluten intolerance I'd have to feed it to my son which is not something I feel i want to do knowing it makes the tics worse so I'm in catch 22 there. Plus I'm not sure that just because it makes his tics worse it'd necessarily show up as an intolerance? Is there a PANDAS test in the US? Would labs allow me to send a blood sample? I'm desperate to know whats happening to my poor little love & help him anyway I can. Its been over a year now - I got the feeling that his Dr. will either just say to me its a chronic tic disorder or even TS (no thing we can do for you) rather than consider PANDAS. In the meantime my kids are totally TV free, gluten, dairy free & its making my husband miserable. many thank, Tiger.