Lydiasmum

Hi everyone, I haven't posted for a while as things have been very good with my 6 year old daughter. Without going through all the history again, I will tell you I strongly believe her first major PANDAS flare was at 4.5 years old when she presented with extreme Tourette symptoms overnight. Looking back there were minor clues before this following an illness-ridden year at nursery with lots of URTI's and no abx treatment (always diagnosed as viral). Symptoms waxed and waned for a year and she has been stable now for over 8 months. We (sort of) have her paediatrician on our side - he is supporting her with preventative abx which she has been taking for 10 months with good results. This week, however, I have noticed more hyperactivity and extreme reactions to sad cartoon and pictures - breaking her heart if cartoon characters are shedding tears!! These same cartoons haven't bothered her in ages, but used to when we have had flares in the past. She is also grunting and has been asking some checking questions over and over again. Oddly enough, my husband came down with a severe sore throat on Monday evening - he says it feels as though he is swallowing glass. Coincidence? My husband's GP won't do a strep test so I have asked my daughter's paediatrician if he can write a some sort of supporting letter to our own GP's to back up why testing and treating is so important, given the unusual circumstances in our household. Can any of you relate to this or suggest anything to stop this possible mini flare escalating. I don't think I'm going mad but I'm sure there's something in all of this. Call it mum instinct...

DD has come a long way since she woke up with severe TS symptoms 18 months ago. Since November last year we have seen very little in the way of tics, her anxiety has lessened and her writing and fine motor skills have started showing improvement. She is happy and social so things are great. However, speech issues and occasional intrusive thoughts still wax and wane. She is unable to pronounce "th" sound (it is said as 'L', i.e. 'ley' instead of 'they'). She also stumbles over words on occasions, mildly stuttering at the beginning of words sometimes. She would pass for Asperger's also as she is obsessed with The Lion King and lives and breathes it, drawing same pictures over and over again and talking about it non-stop. This has remained for many months. Overall she is doing great but is it possible these remaining issues may resolve with time? She is taking prophylaxis erythromycin and has been for 9 months, tolerating them well throughout (no stomach issues, thrush etc.). I also supplement daily with a good clean multivit and have tried probiotics (without streptococcus, but she didn't like them much and seemed more hyperactive with them so I stopped). She has remained well without any strep throat etc. since taking antibiotics and seems to have had developmental strides lately. Is it possible that she can get even better with time whilst remaining on the abx, or do we need to look deeper to resolve the outstanding symptoms? I suppose I am trying to fathom if this is the real her without PANDAS, and that the residual symptoms will always be there and part of her. It is hard to know what is PANDAS and what is the child.

I have been doubting myself about my thoughts on whether DD has PANDAS (not helped by views of local neurologists who claim she is a typical case of TS). Just wanted to ask you all this: I have been keeping a diary and DD had a positive strep throat dx on 12th July 2013. Severe tics and chorea like movements (i.e. dragging her foot) appeared 4 weeks later mid August. Is there a link here, is this typical or just coincidence? I would appreciate views on this. This was the first dx of strep we had, although initial severe onset appeared the year before and severe TS symptoms came on overnight 4 weeks after she presented symptoms of a urine infection (very frequent urination but no infection found). Previous to this she had been at nursery and had been sick the whole year with sore throats, high temperatures and definitely hand, foot and mouth.

Hi Stellasmum, Although I cannot answer your question confidently, I can tell you I am in a similar situation. We are also in UK. My daughter is nearly 6. Major PANDAS flare at 4.5 years. 3 flares in 12 months. At 5.5 years dx with strep throat via swab. Been on preventative erythromycin since August 2013 during her third flare up. The abx did not stop the symptoms but stopped them getting worse. The symptoms remained manageable until November 2013 then seemed to disappear. She has been 95% since December (knock on wood!). I have seen very minor tics in April (like last year) which I think are pollen related. But her mood is good and has been for 5 months. This is the best she has been for 18 months (knock on wood again!). My daughter's pediatrician is the only person who would prescribe continous abx (2 x 250mg per day), her GP refused. The pediatrician believes in PANDAS but has very little knowledge and is being guided by me (gulp!) but at least he is listening. Daughter was referred to neurologist a month ago who dx'd Tourette Syndrome (he told me he doesn't buy into PANDAS!). So I do feel totally alone and understand your angst. I have just had ENT doctor look at my DD's tonsils. He said they look OK but was willing to put her forward for T&A if I wished, given her history of symptoms. I have not done any more about this yet and am not sure what to do to be honest. At some point the ped will want to take her off the abx and I am worried symptoms will come back. But for now she is in a good place. It sounds as though your DD could do with continuous abx rather than lots of short courses. Infections seem to take so long to clear in our kids. Preventative is the way forward. She would certainly need abx following tonsillectomy. It is so difficult to get anyone to take you seriously over here so I count my blessings that at least my DD's ped. is trying his best. He has suggested we get in touch with Great Ormond Street's TS clinic but I did not realise there would be such a waiting list. Apparently, they are all ears when it comes to autoimmune causes for tics. I do not really know what I would do in another crisis. Our ped. tells us not to get too hung up on TS or PANDAS as a diagnosis but keep an eye on what makes the symptoms better or worse. It really is depressing and unpredictable but my gut feeling has always been autoimmune cause. Major issues with strep and more minor issues with allergies. Just out of interest, does your DD ever display very frequent urination before the tics start? I wish you well. I will be sure to let you know if I stumble across anything of help to you during our journey. If you want to mail me personally, please do. It can help to know you are not alone.

Hi everyone. My brain is working overtime tonight. In my ongoing quest to fix my child, I have been reading about the recent Yale Study regarding the role of histamine in TS. The study itself concentrates on 9 family members all found with a gene mutation causing a lack of histamine in the brain. If my understanding is correct, histamine and dopamine need to be in perfect harmony together to keep the brain chemistry just right - a lack of histamine causes too much dopamine and vice versa. So is it very possible that either too high or too low histamine levels can cause tics? This really got me thinking as I myself have histamine induced pressure urticaria. I've had this for several years and have to be on prophylactic antihistamines to keep painful flares to a minimum. When I was very young I had many sore throat/tonsillitis illnesses, as I grew up I had hayfever and eczema. So could my DD (I suspect PANDAS but diagnosed TS) have some gene mutation (causing too much histamine) which causes TS flares? I believe she is PANDAS as strep causes the severe flares, but I have noticed she also gets more hyperactive and 'ticcy' each April when pollen is high. I wonder if this could be the problem with DD and me, although it presents differently in us. Does this make sense? The only anti-histamine DD has ever tried is liquid cetirizine (Claritin?) but this made her more hyper! Is there anything worth trying (preferably not tablets as she can't swallow those)? What can block histamine without the side effects and is easy to give young children? Thanks x

Hi. We are 18 months in to the world of PANDAS since the first noticeable episode (August 2012). Two further flares (April and August 2013). Now we are just about to enter another I think.... April 2014! There is a pattern here. What is the significance? I wonder if its seasonal allergies, although the August flare last year followed 4 weeks after a diagnosed strep throat. DD6 has been on prophylaxis abx for past 8 months so I'm thinking it's not likely to be strep related this time. Her mood is good but I am noticing the movements and a bit of OCD ramping up the past few days. What is it about April and August? Can anyone relate?

Hello all. I'm posting a lot lately in my quest for answers to questions that play on my mind. I'll try to keep it short and not relive entire history all over... My DD (now nearly 6 years old) had a traumatic birth and needed resuscitating. An MRI revealed basal ganglia bleed. She has done great considering and met all milestones even though a little later than average. UK doctors don't go with PANDAS and all her troubles are being blamed on her rocky start in life. She does have baseline issues due to her birth, i.e. poor fine motor skills and a lazy eye. However, there is definitely more at play. I have read tonnes about PANDAS and she ticks all the boxes, frequent urination precursor, debilitating anxiety, a diagnosed strep infection last Summer (I had to beg for a throat swab) followed exactly 4 weeks later by sudden onset multiple motor/vocal tics and intrusive thoughts (I now know there were several untreated strep infections early on). Here's the thing. She was dx with Sensory Processing Disorder at 3 years. She was always fussy and irritable as a baby and reacted strongly to strangers and new environments. She seemed 'different' early on and was always on the move. Rocking behaviour and always restless and hyperactive. Probably had complex motor tics for as long as I can remember, looking back at some behaviours. She is VERY emotional too. So there were things about her way before the big crisis we had at 4.5 years. We have just had TS dx and are about to get Asperger's too (she does appear to have traits but only a few of them are remain consistent). I won't get too hung up on the labels, but DD's early years make me doubt my gut instinct sometimes. She is currently stable and has been on prophylaxis abx for 8 months (lots of persuading of paediatrician required!). If I'm honest this is the best she has been confidence-wise in 2 years (natural growth and development?) and she seems generally much calmer and more focused. Ped wants to remove abx soon to see what happens. I am scared, although I have no real 'proof' it is them that are keeping her stable. She did get though winter with no illness. I would appreciate your thoughts on this. Did your babies have very early signs before initial onset if you really think about it?

No connections, no money and 26th April is actually my DD's 6th birthday and she is looking forward to having a party this year!! (I know a lot can change in 3 weeks but the signs are good thus far). The conference does sound fascinating and if there was any way.....

Arghhh! Wish I lived in the US not the UK! You have so much more going on there! The few people that have heard of PANDAS over here don't know anything or don't believe in the theory. Most people think I am referring to the black and white cuddly variety (I wish). If there is any chance some feedback could be posted on this site for those of us who just can't be there, this would be fantastic. x

Wow, thank you so much everyone. Your responses have made me smile (it's been a while). We are 18 months in to this nightmare and we have had 3 true flares and a few minor ones. Out of the 3 biggies though, I can honestly say the last 2 were not as dramatic as the first initial onset that made us sit up and say "what the *****?!" My daughter is on prophylaxis antibiotics and I use ibruprofen some days when mood is very erratic and it does seem to help a little. I have been struggling to enjoy those days and weeks that are good and this is going to change. I pray we are heading in the right direction - just like you guys! Thank you all. Keep the good stuff coming!.........

Hello everyone. I am struggling with positive mental attitude in any shape or form at the moment, even though my DD is in a relatively good place. The usual PANDA parent complaint - I am always looking for every little sign of a relapse. It's doing my head in. Assuming that families with the worst behind them are still using this forum, can I please ask for some good stories and how things really can change for the better. I would love to read about recoveries right now to give me something to look forward to. Thank you x

Hi. I could have written your post - I feel your pain and am so sorry. I wouldn't wish this on anyone. For the first time in my life I have had to get medication to cope as 18 months of constant worrying and obsessing about PANDAS has now given me a very real anxiety disorder. I know I can't be much help to you in this frame of mind, but I want you to know you are not alone. You will find comfort in this forum though, particularly when you feel no one else is listening. Strange as it sounds, I find comfort in the fact that PANDAS does exist (in addition to Tourette's and all of those other brain disorders). We must remember PANDAS doesn't necessarily mean life-long. And it isn't life threatening. It DOES exist, despite what some experts might believe. We all know it and have a story to tell that supports our belief. When my daughter woke up one morning as a child I didn't recognise, with severe Tourette symptoms and off-the-scale anxieties I was actually relieved to find PANDAS information. PANDAS in unpredictable and this is very scary. But unpredictable also means it's not a done deal and things can get so much better too. Be sure to remember good times do follow the bad and there is hope. Our poor children that are put to the challenge time and time again and bounce back are the strongest beings around. They are fighters and always will be. n.b. Just for the record I have a history of severe allergies and lots of sore throats as a youngster. At 25 I developed debilitating pressure urticaria following a severe chest infection and a flu jab - I still have flares 15 years later. There is a genetic immune dysfunction issue here for sure. I have to keep believing even though no one here in the UK is buying the PANDAS theory. It's sooooo hard. Sending prayers your way x

Hi all. I am pleased to say that for now (knock on wood) my DD (nearly 6) is 'stable' and has been this way for 4 months. She has been on prophylaxis erythromycin for 8 months now following last flare in August 2013 which continued until November. (What is it about the month of August?). Despite her being 80-90% good, there are a few lingering symptoms:- - A red ring around anal area that comes and goes (seems to improve with Sudocream?) mildly itchy but mainly sore. Odd looking bright red area with definite margin (looks like it has been drawn on with red felt pen!!). Have had a swab in the past but would regard it inconclusive as too much time went by between taking swab and getting test. Only (normal) anaerobes detected. It doesn't appear to be thrush, although I have no proof of this. - intermittent stuttering usually the letter w or s (sssswwwwimming) or (wwwhere..). Speech is mainly OK but the odd stutter is getting more regular in conversation. - movement 'mannerisms' these movements are not exactly tics as they are not repetitive or quick. They are more like excessive movements following the norm (arms will go down by her side and she'll do a little tense posture - if she is pushing a swing in the park her arms will do extra movement as the swing moves away from her body as if she's still pushing. (Sorry, hard to describe). She does get a little hyper in the evenings too but nothing like the full-scale dilated pupil episodes of the past. - toy obsession continues - she is well into The Lion King (has been her latest craze for 6 months). You can play with other toys and she will talk about other topics if encouraged, but leave her to her own devices she will draw, write about, read about, talk about and watch The Lion King all day long from the minute she wakes. This may be normal nearly-6-years old stuff and it doesn't interfere with our lives to any real extent, she is just so repetitive in her interest. Can anyone relate? Have advice? Apart from the above my girl is generally happy and settled. Her mild anxiety is at an all-time low currently I am holding my breath slightly as our pattern of episodes have been April and August..(strep. confirmed 4 weeks prior to last onset). She appears to have some Asperger's traits but they come and go and I don't think would warrant a diagnosis. I want to take this opportunity to thank all the lovely mums on this forum. I am quite new here and am suffering from anxiety since DD's ferocious onset Summer 2012 (manifested as huge anxiety and multiple vocal/motor tics). I am looking to the doctor for medication myself to deal with the awful state of mind I am now in, totally obsessing and living in fear of the PANDA. I am struggling with neurologists who 'don't believe in PANDAS' or 'don't have any knowledge of it' and this forum is really my saving grace. So thank you and bless you and your families.

So we have just returned from paediatric neurology appointment for my (nearly) 6 year old DD. Despite this appointment being set up by DD's regular paediatrician, I entered the office to find a blank piece of paper and NO history on DD's case. I had to start all over again, going back to her problematic birth. This neurologist told me "he doesn't buy into PANDAS". I took a sheet containing potted history of the 3 episodes we have experienced in the past 18 months which I firmly believe are PANDAS manifestations. He did not read it whilst I was there but asked me lots of questions. To summarise, he believe it is Tourette's and this diagnosis will in fact help to get her resources in school. He based his diagnosis on the fact that DD has never been entirely free of mild movements since 3 years of age. She is good currently (since prophylaxis antibiotic 7 months ago). She is about 90% meaning that on the odd day there may be a small 'mannerism' movement or a click of the tongue. This is the way I always remember her so she is probably close to baseline. She is happy and coping well in school. I came away feeling deflated. I honestly believed that the case history I had documented would make him sit up and see that this course of symptoms just doesn't seem standard Tourette's. With each episode the significant frequent urination precursor before the movement symptoms and psychological symptoms sky-rocketed. The fact that she seems a different child when in an episode. He believes the urination is an OCD/obsession/anxiety sign which is typical of Tourette's. Long story short, he actually observed her for less than 10 minutes of the 45 minutes I was there (and 20 minutes of this I was going back over old ground which should have been already at his fingertips before I arrived). I feel depressed because he also told me Tourette's was life-long and did not have a 'cure', although can be managed through medication should she ever get to crisis point again. I obviously don't want this for my child and had hoped this man with all the letters after his name could reassure me I was on the right track. But it seems only this forum keeps me believing in myself, keeps me listening to my gut feeling. Thanks for reading. I just needed to reach out to all of you who live this first-hand and know how frustrating getting help can be.

I believe I am the trigger and the cause of my DD's PANDAS flares. I have "delayed pressure urticaria" (cause unknown) but I got it in my early 20's following a severe chest infection that took 3 rounds of abx to clear. That same year I had my first (and my last) flu jab as (since the chest infection) I get mild asthma during colds/viruses. I have never been the same since that year - often painful swellings where pressure is applied to my skin, as well as swollen and stiff joints. Flares come and go. When I am good it's like it never happens, when I am in an attack I can be bedridden for 24 hours until symptoms disappear. I have had numerous allergy tests but nothing conclusive. Antihistimines don't work - but steroids do!!! Interestingly, I had virtually zero vitamin D though and took high dose to get my levels back up. My symptoms did improve after this, but not cured. So here's my thinking. I have passed on the immune disorder susceptibility to my daughter. Along come childhood vaccinations, numerous strep/other infections and viruses and the storm of PANDAS is created. My daughter seems more hyperactive, fidgety and moody when I am in a flare myself. I have been to my GP who has ruled out arthritis, thyroid etc. etc. I have put the situation to him: could my problems and my daughter's be linked up somehow. If I could find the root cause of my symptoms, could this help both of us. Of course, he looked at me like I had two heads and said "I doubt it, needle in a haystack etc. etc"... (he is skeptical about PANDAS). I am convinced. I just need to find the right GP to be interested in all of this. Luckily, my daughter's paediatrician buys the PANDAS scenario and is willingly prescribing prophylaxis abx for my daughter and she is much better than last year. My gut feeling won't go away. My daughter and I are linked up somehow in this horrible thing.

I could have written your post myself about my daughter! We too are at about 85% - OCD and mood much better, separation anxiety has mellowed but still there - however those damn tics! I am sure we have days without any at all but she is hyperactive by nature so goodness knows there are probably motor tics in the mix somewhere but I am noticing two specific (annoying!) vocal tics - a loud gulping and vibrating lips just like a horse! I wonder about TS so much it consumes me with worry. I too feel discouraged at times but I keep reminding myself of how bad things were for us at the end of 2012 with initial episode. It was horrendous and my daughter (4.5 yrs at the time) couldn't even walk properly or function at school for 3 months. We have never been to that level since. She is taking preventative abx which seems to be keeping symptoms mellow. She will have mild flares with colds/viruses which seem to be shorter and much more manageable. I totally understand how you are feeling but remember that TS/PANDAS/OCD/ADHD etc etc. is a bunch of labels to describe a set of symptoms. They are not 'things' you get. This is why symptoms are so variable and overlap so much. If abx are helping, it is a sure immune thing and what goes into the gut and breathed in from the environment all have an effect on immune functioning and thus resulting symptoms. It really is about a combination of immune support - healthy eating, keeping hydrated, regular exercise, a good supplement (without anything artificial), abx to prevent strep (our biggest enemy number 1), plenty of sleep and keeping stress to a minimum. What I can tell you about our situation is that this is the best my daughter has been in 18 months. She has been taking abx for 5 months and even though we are not 100% neuro-typical, we are heading in the right direction. I guess she may always be 'quirky' but I'm starting to have faith that she won't resemble the worst case of tourettes that you see on the documentaries because really that's what scares me the most. Stay positive and notice the gains, however small. Good luck to you and yours.

Hello everyone, Just wanted to share with you all how I feel and hope I don't sound too selfish. Right now my daughter is 85%(ish) good and has been for 2 months. Instead of enjoying her and thanking god we are not in the awful crisis we were last year, I am constantly listening/watching for every 'sign' that she is going to relapse and go back to that awful place. Every time I hear her get out of bed I wonder what day we will have, every time she over-reacts (hello!!! She is 5!!) I wonder if we're sliding. It's taken over my life even though others (namely my DD and DH) seem to be getting on with theirs around me. When I am not watching DD during the day, or worrying about her at school, I am constantly researching on line in the evening trying to fix her. Truth is, she relapses mildly on and off, waxes/wanes - and what is it with 3 months??? Our huge issue is severe motor/vocal tics plus mild OCD and anxiety. You can't be diagnosed with TS if you have had more than 3 months without tics. We get to 3 months, but never past this timeframe. I am now obsessed she hasn't got PANDAS but TS+. She is currently on prophylaxis abx (since August). I just can't remember what it's like to be normal. I know I have to get on with life but don't know how to any more. Can anyone else relate? What can I do??? Any tips/advice/reassurance most welcome. Sorry to sound so negative, but my thoughts are so consumed with it all (and this is not how I was before this hit our family!). Thanks for reading...

So we have just been to the amusements with a bag of coins to kill a bit of time and DD got sooo upset in there. The music one of the slot machines was playing was making her feel sad. We left there but she has been thinking about the music ever since and keeps crying, telling me she can't get the tune out of her head. When I have distracted her, we have shot straight to silly behaviour and drunken laughter over nothing. Thinking about it, yesterday she seemed a bit off and didn't want to come in the shop with me as there were too many people and she has faint dark circles appearing under her eyes. I hope there is nothing bigger coming - she has been good for a few months now. I'll give her ibruprofen before bed to see if her mood is more stable tomorrow. Has anyone else experienced these symptoms?

Thank you Rowingmom for taking the time to reply like you have. Interesting that so many symptoms are the same (or similar) in our DD's. Diagnosis for my DD so far: tic disorder/sensory processing disorder/anxiety + 'possible' PANDAS/PANS and suspicion of dyspraxia and/or Asperger's (awaiting assessment via school). It's a melting pot of neurological mishap and everything seems to overlap. The fact is, whatever DD's baseline label, the Tourette's came on overnight, reached full scale within weeks, slowly fading after 2 months. Disappeared for 4 months and back twice since following positive strep throat swabs, together with intrusive thoughts, huge anxiety, heightened senses and emotions. All of these symptoms were preceded with significant sudden urinary frequency each time. My habitual research in the past 12 months leads me to PANDAS every time.AND I have an autoimmune dysfunction which means I have been troubled with hives and swollen joints on and off for 12 years (delayed pressure urticarial). As a child I had severe hayfever, mild eczema and always got sore throats. DD is in a reasonably good place currently (since November) I just wish I could switch off sometimes and enjoy the here and now rather than forever looking for signs of a relapse.....

Thanks for your posts so far, I really appreciate the input. I am just trying to make sense of what is going on so she gets the right treatment as early as possible. To provide a bit more background on why I think my daughter has dyspraxia:- - she suffered lack of oxygen at birth and was low birth weight (remained in intensive care for 2 weeks before coming home) - she was a 'hyper alert' baby from a very young age, always on the go - she was late to sit and didn't walk until 20 months - she didn't chew/eat solid food until 2 years - sensory sensitivities, parcticularly noise - never mouthed toys as a baby - very clumsy (still is), spills drinks, bumps into things etc. - cannot use knife and fork (she is nearly 6) despite numerous lessons - easily frustrated and compares her abilities to others - dressing is awkward - can't use scissors and handwriting is poor for age - find basic maths really difficult - reads 2 years ahead but very immature play - can't seem to use 2 hands together (i.e. you would have to tell her to steady a piece of paper with one hand whilst she drew with the other - she would naturally chase the paper around the table!) - she never keeps her limbs still, even when seated - finds sitting at the table exhausting - needs constant support to stay on task - social skills fluctuate (in fact nothing is at consistent level, but never gone) Her teacher sometimes thinks Asperger's, but then again not sure. The PANS may have started very young but overnight onset of severe tourettes started at 4.5 years following a year of on/off sore throat ('viruses'). She is doing OK on prophylaxis thankfully, but will have minor relapses with colds and other illnesses (more hyperactive, more anxious, more sensitive and a few tics here and there). Looking back, I now know she exhibited a few motor/vocal tics at around 3 years when she started nursery and kept catching 'viruses'. Her baseline is reasonably good but not neuro typical. She really struggles with fine motor and organising her actions and thoughts. She is extremely emotional and 'feels' others sadness (i.e. she will cry at a picture of a sad face in a book or on a cartoon!). She has continual separation anxiety also and I am having a battle making her feel good about herself.

Does anyone's child have dyspraxia as main diagnosis - plus PANS/PANDAS in the mix? I am so mentally exhausted trying to fix my dd (nearly 6) for the past 2 years that all other aspects of life are suffering. Her baseline issues she has had since birth seem to scream dyspraxia, particularly as I have found out it doesn't just affect motor skills, but also emotional regulation, thought processes and nervous/immune systems too. Symptoms can even look a little like Asperger's it seems. My gut feeling is Dyspraxia with PANS as an added extra. She just doesn't have enough ASD traits to warrant the Asperger's and her intermittent 'tourettes' is very chorea-like. The anxiety and obsessions are there always but very low-key. All of these traits ramp right up after illness (always sore throat/sinusitis) together with the urinary frequency. Never wanted to get too hung up on labelling my child, but it seems this is the only way she will get the right help. We just want to know what we're dealing with. I'm not looking for a magic cure, just to get my sweet girl to her full potential with early intervention. Thanks in anticipation..

Just wondered if anyone out there has tried Saccharomyces Boulardii for gut repair during long term antibiotics? I have read some positive reports about it in relation to immune modulation.

Hi all, DD is doing rather well on abx (erythromycin prophylaxis) and has been taking for 5 months now. When I requested them from paediatrician he did not have an issue and agreed to monitor her, with a view to taking six weeks at a time. I initially asked him to treat as Sydenham's Chorea as DD got the whole strep and rash episodes several times prior to major overnight onset which was mainly motor/vocal tics with chorea and dystonic movements in the mix. Mild OCD factored in but it was the lack of body control and huge fears that turned our lives upside down. We have seen 3 mini flares in the 15 months since first onset (the most minor one just after starting abx). The only lingering symptoms are separation anxiety and excessive worrying, but on the whole school is going well and we are having happier family times. How will I know when to stop abx? The paediatrician has limited knowledge of PANDAS but he is listening to us (bless him). I have read some horror stories about PANDAS kids who have suffered a major relapse that never reverted back to previous baseline, despite reintroduction of abx following a remission break. To date, DD seems to be tolerating OK with no stomach issues or signs of yeast (long may the good run last!). I am scared to stop them but scared to keep requesting them indefinitely...

Nope, you are definitely not alone - in fact in very good company! I read your post and can totally relate to it. The school struggle, the doubting yourself, the whole unpredictability of what could be in store day to day. My dd (5) has PANDAS. I worked this out for myself after learning what I could and keeping a diary of symptoms for over 12 months. She has been on preventative abx for 5 months now and things are reasonably good currently. I can relate to the colourless poop by the way! I have seen this in 2 of her 3 flares. God knows what the exact cause of this is, but I do know it's all linked in for whatever reason. The hardest thing for us parents is to learn not to constantly live in fear of the next setback and enjoy all the good days we are in danger of missing as we are forever researching, recording and trying to balance supplements. In fact, my new year's resolution is to live each day! I hope your son continues to do well. All the very best to you and your family.

Hi, this is a strange occurrence that has now happened twice with DD during mild PANDAS flares. During the latter stages of an 'episode' she presents for a day or two with very pale/grey stools which quickly return to normal?? Nothing different about diet and no other stomach issues. She is on prophylaxis abx, but the first time we saw this she wasn't on medication. Has anyone else experienced this?