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Lydiasmum last won the day on June 9 2018

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  1. Hi, I'm really scared for my 9 year old DD at the moment. She has always stuttered ever so slightly, nothing that would impact her self esteem. She is being treated as PANDAS by her ped and is still taking prophylaxis. She was classic presentation at 4 years old - overnight tourettes, OCD and separation anxiety. History of strep/scarlet fever and various other untreated infections as a toddler (they were always 'viral'.....). We are much better these days, however her speech gets really messed up at times. 3 weeks ago she seemed a bit out of sorts, headache, rosy cheeks, blocked nose and one day of running to the toilet but couldn't go. These symptoms passed quickly after a day or two and back she bounced. A week later she lost the ability to talk properly. Right now it's awful. A mixture of blocks, prolongations, and um er, um er... for ages. She cannot hold a conversation. It breaks my heart. I did try upping the abx to treatment dose for 10 days (this seemed to help last time) but it hasn't made any difference. Apart from being conscious of her stammer, she is generally OK in herself. Is this PANS? Has anyone else experienced this with their child. Can she grow out of this? b.t.w. puberty is definitely starting to kick in......
  2. ​Dear Everyone, ​I had waited all day for a phone call from the paediatrician to get advice. The call never came. I am pondering and worrying and thought I would turn to this wonderful forum for advice. ​My DD is 81/2 and she has been taking prophylaxis erythromycin for just over 3 years now. She has remained at 90-95% good, with very minor and manageable anxiety and mild tics following viruses. She has achieved 100% attendance at school since taking the abx and has tolerated them well - no stomach issues and no major behavioural issues and explosive movement disorder since PANDAS entered our lives. ​However, in the past few weeks she has mentioned an 'odd feeling' in her chest and stomach area a couple of times. On these occasions, I put it down to a bit of worry or stress relating to what was going on at the time. However, last evening at tea time she was holding her chest and looking uncomfortable. I saw she had cleared her plate and asked her if she might have eaten too much/too fast. She said 'no mum, it's that funny feeling I told you about before, happening again'. When I asked her to describe the feeling, it sounded very much like irregular heartbeat. Me being me, I googled her abx in relation to this occurrence as a side effect, and - yes - there have been reports of prolonged use causing arrhythmias. ​Now I have a dilemma because, obviously, this isn't good but I am assuming its the abx, not knowing for sure (just like everything else it seems!). Being scared about the fact her heart could now be suffering from such an extended use of abx, I stopped them last night. Gave her none today either. I am left wondering - what could be the effect of stopping prophylaxis suddenly after so long? I can't find any useful information on withdrawl symptoms of continued abx. And of course the awful fear she is now a sitting duck for strep and other bacterial infections. ​I never imagined keeping her on them indefinitely, but then again I haven't wanted to think that far ahead. We have just been happy living with the worst behind us. It has taken me over 2 years after the initial 'event' to actually file the thought of PANDAS somewhere away from the front of my mind. What would you do? Does anyone have any similar experience? Could her immune system now be stronger with age, despite being protected from the abx? I feel sick to think this may invite another major flare and then we can't get her back to this good, but on the other hand - why is she feeling heart flutters? ​Thanks for reading - and Merry Christmas by the way! x
  3. My DD8 has been stuttering terribly again for a couple of weeks. No usual signs of illness (temperature normal, not fatigued), but other symptoms also presented - dark circles under eyes, rages and restless achy legs. I have increased prophylaxis dose of abx to treatment and on day 4, symptoms gone! Speech 98%, behaviour markedly improved and her eyes are brighter. Why would this be? If she had no infection, but only a virus, why would the abx have helped? When her stuttering was at its worse, she had jaw juddering with obvious struggles and her breathing was out of sync when trying to talk. I wonder if this was a motor disturbance like a tic would be? Her first big flare 4 years ago was tourettes that appeared overnight and resolved 4 months later. We haven't seen an obvious 'tic' since. Just emotional issues and struggled speech.
  4. Hi, It's been many months since I've posted anything on here. That is good. We have come a long way in 4 years, but I am wondering what we are left with. In brief, at age 4 my DD woke up one morning with sudden onset 'tourettes'. It was debilitating and I managed to get her ped. on board to prescribe abx. She has been on prophylaxis dose ever since. Now he wants to wean her off and I am scared! We've had no tics for 3 years, just ups and downs of increased anxiety, sensory issues and some OCD (intrusive thoughts). Everything manageable. She scored 6 on the ADOS (ASD screening) and you need to score 7+ to be diagnosed with ASD. So borderline. School is supportive and she can still tap in to extra support if needed but she has managed quite well in Year 3 without much 1:1 intervention. What we have is definitely Aspergers/ASD traits, lack of eye contact, very literal, perfectionist, frustration and emotional outbursts. As she is maturing, a lot of other traits are disappearing (e.g. restlessness, lack of concentration). She does, however, have speech disfluency which waxes and wanes. She stutters and sometimes it can be quite significant. She is currently taking quarter dose of erythromycin (decreased from half dose two months ago). The plan is to have her off it completely by October. She has managed 100% attendance at school ever since the abx, despite lots of strep, hand foot and mouth going around the classrooms. Due to her lack of oxygen at birth and many complications at the beginning, I do wonder if this is 'how she is wired' and that the abx are purely 'placebo' but she definitely had textbook PANDAS episodes at ages 4-5. I am worried weaning off will cause a backslide. I don't know what to do. Any experiences similar/advice would be appreciated.
  5. I've just received dx that DD8 'does not meet the threshold for ASC at this time'. She has many traits but is only borderline, however it would be prudent to reassess around 10/11 years old when symptoms will have either lessened or be more obvious. Having just had SEN annual review with school nurse etc. it is now suggested dyspraxia may better explain her issues - main ones being anxiety, dysfluent speech, processing problems and motor delay, struggles with maths and understanding multi-step instructions, clumsy gait, terribly disorganised and untidy, can never find things, long-term memory great, short-term memory poor. Just wondered if anyone can relate? We know without a doubt that her second layer is PANDAS.
  6. I will apologise before I start that this is just a negative rant. But I need to do it and this is the only place. I HATE this. PANDAS, PANS, probiotics, antibiotics, vitamins, immune deficiencies, mold, allergies, illness, dietary modifications. All of it. The constant explaining to those who don't understand, constant making excuses for how my child is today. Waking up (if I sleep at all) to goodness knows what. The uncertainty of the future, the walking on egg-shells and not knowing. The constant rollercoaster. My mind has been taken over by this horrible condition that nobody understands. No real help available. I am supposed to be grateful it's not life-threatening so why do I feel so ungrateful. I love my child, of course I do. Her smile, her lust for life. I live to keep her safe and protect her. But I can't fix her, no matter how hard I try or how much research I do. Of course I want her to live a 'normal' life and act and feel like her classmates, but it's not to be. And when that diagnosis of ASC and spoken language impairment arrives next week it won't help. I will try to focus on the action points and fight with all my being to get her all the support available to help, but even that won't fix her. I want her fixed. I want that normal existence for her. I don't want PANS, Asperger's and terrible stuttering that disables her speech and gets in the way all the time. The crippling anxiety and constant need for reassurance. The repetitive checking questions ruling the conversation between us over and over and over again. The buried envy I feel to see my friends out and about with their 'neurotypical' children. Arghhhh! I hate all of this. So life-changing. So unpredictable. Life can never be how I imagined it and I feel sad - sad for my girl but sad for all of us as a family too. Sorry to sound so negative but I know you guys will understand. x
  7. Hi, Does anyone know why PANS symptoms would surface 8 weeks after a bout of illness? This is the pattern we notice with DD. A few off days with high temperature (not strep) and listless with headaches. Recovers and 8 weeks later unable to speak fluently with thoughts OCD and constant checking questions.
  8. Over 3 years ago my DD (then 4 yrs) definitely had a PANDAS episode. Yes, living in the UK this is my own diagnosis but it couldn't have been anything else! She woke up one morning with severe tourettes, both motor and vocal tics, panic-stricken, constantly running to the toilet for a pee every few minutes and had a history of 'viiral' sore throat illnesses. The tourettes episode gradually went away after a few months. I had my suspicions of PANDAS so when she developed her next raging temperature and severe sort throat (with red spots all over the roof of her mouth) I asked for a throat swab which came back Strep A positive. Weeks later she started foot dragging, heightened sensory sensitivities and mega anxiety along with mild tics. I kept a diary, got her paediatrician on board with prescribing preventative abx and things got better. She still takes abx and apart from the odd bout of thrush she does well and has 100% attendance at school, no more sore throat illnesses. She has a good multi vitamin and I try to keep her diet clean, although I know we could do better. However, we do have waxing and waning of stuttering and OCD. We are going through a bout right now and I just don't know why. It's bad. No motor tics, but constant checking questions, the same ones over and over again. She talks about her (limited) interests all day long and her speech is very bumpy with lots of silences whilst she struggles to push the words out. Lots of sound repetitions also. I have noticed she is talking much louder too and more pedantic. Aspergers-like I would say. What is going on? I am not aware she has been ill, apart from one weekend when she was listless and a little out of sorts first week of December. She has a varied diet but as well as her fruit and veg has had her share of sweet stuff, particularly as we've been finishing off the Xmas left over naughty treats. Her mood is generally good and I haven't noticed any real tics for nearly 2 years. But her speech is terrible and my heart breaks for her. She is never 100% fluent, but generally 95% and nothing like how it is currently. She doesn't seem more anxious than normal but is repeating her checking questions constantly. I am conscious of her long term abx but scared to wean her off. I have tried probiotics but they seemed to make her agitated and hyperactive. She also has this reaction to antihistimanes (she does often get blocked/nasally). I'm not sure what I can do to help. I have read about the TS/OCD/Stuttering connection and am now wondering about plain old TS. We haven't seen a 'PANDAS' flare in years. We are on the autistic spectrum pathway - she is seeing a speech and language therapist on Monday. They are trying to determine if she is 'spoken language impaired', 'ASC' or both.
  9. I would appreciate anyone's opinion on my thought process! I will try to be brief but it is difficult so bear with me.. Me - hayfever, dermatitis, cat allergy, wheezy with colds. Developed bizarre massive regular hives in mid-20's. Can't pinpoint exactly when it started but I remember having a terrible chest infection after a stressful time and it took weeks and various combos of abx to shift. I also took holiday abroad around this time and got several infected bites. Fast forward 15 years and i now have debilitating flares of angioedema/arthritis symptoms and generally feel unwell most of time. Diagnosed 'idiopathic delayed pressure urticaria'. Years of tests and prescriptions and nothing helps and nothing specific shows up except slight raised inflammatory markers as if i am fighting minor infection. My dd7, bless her, has been thru the mill. Born not breathing, low birth weight and in general poor state. This was unexpected and a mystery to the doctors. Did i have an infection, had i taken medication they asked me. Autistic traits and diagnosed SPD at 4. Noise sensitive, very emotional and anxious. Seperation anxiety most debilitating. 4.5 yrs had overnight onset movement disorder, tics, dystonic posturing, foot dragging, anxiety through roof, a total mess for 6 months. Got much better but not 100%. Prophylaxis prescribed and still takes 2 years on to protect from strep following multiple sore throats and fevers. Generally much better these days but still anxious and has small flares a month after illness. Her main symptom apart from heightened anxiety is speech disfluency -this can get painfully bad for her. She also asks repetitive checking questions and has difficulty separating fantasy from reality. She is a bright, happy girl mostly but her motor skills are delayed and she's heading for a diagnosis of ASC with spoken language disorder. She is nearly at the end of her 12 month assessment pathway. I had a lightbulb moment when i read up on lyme. I want to ask for a test, given that it can live in your body for years, you can pass it to your unborn baby and the borellia spirochete has a life cycle. My worst inflammatory flare ups happen every 3\4 weeks and i blame it on hormones\monthly cycle! Am i on to something here? I can't shake the idea that if I can help myself I can better help my daughter. I feel i need to ask you guys before i embark on yet another idea with my doctor. I have been a needy patient!
  10. I just don't know what to do about abx prophylaxis. Dd7 has been taking daily preventative for just over 2 years. She is mostly 95%, with a little more general anxiety than her peers but we get by and life is great compared to 2012 when pandas started. Do i risk weaning her off? Is it possible the abx themselves stop the 100% normality. We see minor flares with colds etc but not too obvious to others. She tolerates abx well but has had a couple of yeast infections. We only do abx, vitamin supps and watch her diet. She didnt fare well with probiotics. Ped is happy to keep prescribing and is supportive but his knowledge with pandas is limited and he is guided by me. Yikes! What to do. Worry about damage to her stomach. Advice anyone?
  11. Thankfully I have not had to put a post of my own on here for a while. DD7 is being treated as PANDAS (i.e. she has been on prophylaxis for over 2 years now, with good results). She will still have minor stuff that waxes and wanes with viruses and bugs, but on the whole nothing like the beginning of our journey. My reason for writing is to find out from others the situation with regards to speech problems and anxiety as those are our two main issues. Can anyone else relate? DD always is and always has been anxious, particularly separation anxiety, despite this we usually get by and she is managing in school - but on occasions the anxiety will ramp up for a week or two. The other strange symptom that seems to go in 8 week cycles is a form of stuttering. Suddenly her usual fluent speech takes a hit and she will have regular blocks. Hard to describe as not the usual sound repetitions, more like she momentarily loses the ability to get words out and there's silence. You think she's given up talking but you can see the strain in her face. I wonder if this will ever disappear. There never seems to be an obvious cause and I keep a diary. I am keeping treatment simple as she is functioning very well and has been for 18 months. She takes a daily dose of erythromycin and a good quality multi-vit. I keep her diet as clean as possible and she is in a good routine with meals and sleep. If I'm honest I can't shake my PTSD and still dread the full-on Tourette-like symptoms coming back, particularly when she has a bad time speaking properly.
  12. Hi, My DD7 is suspected PANS (she'll always be 'suspected' as long as we live in the UK....). Thinking about my own history and health issues, I find this interesting and there MUST be a link:- - Age 3 to 7 I had numerous sore throats (apparently I was one sore throat away from a tonsillectomy) - Age 7 to 15 - mild eczema and very severe hayfever that needed prescription antihistamines - Age 8+ lots of fears (heights, spiders etc.) and excessive worrying (I still do!) - Age 14 (around exam time) a period of trichotillomania that lasted a year, coin-sized bald patches all over my scalp! - Age 18+ mild OCD and paranoia (convinced people talking about me), highly sensitive to others body language/facial expressions, need for symmetry in my living environment, use of my favourite numbers for various routines etc. etc. - Age 25 - got very ill with a chest infection that antibiotics just wouldn't solve (needed 3 rounds, but figure it must have just gone on its own after 3 weeks). Since this time I have had regular flare-ups of hives and angioedema - I get huge red, itchy swellings on areas of my skin where pressure is applied. This affects my feet the worst and seems to flare-up with hormonal changes and if I've been eating rubbish food. I take antihistimines daily (H1 and H2 blockers), Vitamin D (I have found to have a significant deficiency), turmeric for inflammation and a multi-vitamin complex. This combo is helping but hasn't resolved symptoms completely. I have been thoroughly allergy tested and blood tested over past 15 years but nothing obvious! The only thing that shows up on blood results is high inflammatory markers and negligible vitamin D. I consider myself a well-functioning individual at 40 years old, but tbh I do worry a lot (even before PANS hit us), have mild OCD and fixations - and still scalp-pick if I get stressed. Just thought this was interesting, considering my (mildly autistic?) daughter woke up with full-blown TS one morning - after having loads of sore throats that, of course, were always viral. My GP looks at me like I have two heads when I mention it.
  13. Hello everyone, My DD7 is suspected PANDAS/PANS and she's been taking prophylaxis abx for nearly 2 years. Overall she is doing rather well but with what seems to be minor relapses along the way but pleased to say NOTHING like the onset at 4.5 years old. Tics non-existent, sleeps and eats well, generally happy as long as she is in her 'comfort zone'. She has periods of time when her senses and emotions are easily overwhelmed. Speech is a bumpy road - at best she has an occasional stutter, at worst she is an urgent speech therapy case as she struggles to get her words out. Her main symptom is anxiety. She has always been anxious and sensitive. At the moment she is extra anxious - mainly separation anxiety. Last night she sobbed as she explained she wishes she could go to the neighbours to play, she knows she is different from her friends in this way and can't really understand why she finds this so difficult. She says she feels sad and thinks about bad things when she's away from us. It's heartbreaking to hear and I just don't know how to help her. I think she needs professional intervention with the anxiety as it is interfering with her day to day life. I'm not sure if she's ASC or whether the anxiety makes it look this way as she has coping strategies to deal with her fears: the need to know what is going to happen next/tomorrow/the following day, what she will wear, who she will see. She plays with the same toys and draws the same pictures/writes the same stories etc. etc. I'm also not sure if the anxiety is causing the stuttering or whether the stutter is a physical mechanism of PANDAS. It's hard to make sense of it all! Has anyone else's child received help for anxiety and did it help? I'm trying to understand how therapy can help with symptoms that are actually determined by a physical cause. Any input would be helpful as we are struggling as a family currently. Thanks for your help.x
  14. Hi all, DD7 is good... I mean v. good!! It's been happy for over 12 months here. Quick background - overnight severe TS/tics end of 2012 with all classic PANDAS symptoms following slapped cheek and a year of on/off strep throat, gradually resolved 3/4 months later. Prophylaxis erythromycin for 2 years now and just get mild OCD with very minor flares. Not seen tics in 12 months, just some on/off stuttering and repetitive questioning/heightened emotions with minor illness. Very manageable and DD is generally happy, sociable and settled at school. Pediatrician is prescribing abx via local hospital as GP just refuses. Ped. is supportive but limited knowledge and wants to withdraw abx this summer (just as DD is going to change schools!! ) - he says this will 'prove' if they are actually doing anything or not. I am scared that she will backslide and we may never get this 95% back again. I imagined treating her as if RF/Sydenham's and keep abx up until 18 years old +. It was a horrific onset that rendered her dysfunctional as she could not control her body and had to limit school time. She was 4 years old and to see her then was truly heart-breaking. I know all the risks with abx but I would guess this is the best of 2 evils. She tolerates them well and has no obvious GI issues. What to do?? Bear in mind we are UK and there are no true 'specialists' here.
  15. Hi all, I have had pressure angioedema for 15 years. It is horrible when it flares - anything pressing my skin causes huge deep swellings which really affects my quality of life, particularly as one of the worst affected areas are my feet. Apart from prescription antihistimines and high dose Vit D (I was negligible when tested), doctors haven't really been able to help. I have learnt that this condition can be caused by C1 inhibitor deficiency. I am going to ask to be tested. Apparently C1 inhibitor regulates the body's response to inflammation.... My DD7 has PANDAS. I am sure we are linked and I am wondering if I've passed this deficiency on to her. Does anyone out there think I might be on to something?
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