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Everything posted by Lydiasmum

  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, bl
  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
  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
  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 screeni
  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 memor
  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
  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 s
  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 o
  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 sup
  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
  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
  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
  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 ab
  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
  16. We've been waxing and waning PANDAS/PANS symptoms for over 2 years. Things have been much better this year. In November 2014 DD6 took a couple of days of school with high fever and a 'sandpaper' texture rash over her neck. The rash was skin coloured and easy to miss, but was very fine and felt rough to the touch. I thought this was strep, despite being on prophylaxis for 18 months. I got a throat swab and it was negative. Doctor felt it was a viral rash. I decided not to increase the abx to treatment dose on this occasion. Fast forward 4 weeks and DD's (very minor) stutter suddenly r
  17. This is a tough one. Separation anxiety/general anxiety, in our case, was the worst symptom for our daughter. I remember like it was yesterday not being able to go to the bathroom without her following. Her gran couldn't even get to take her out without mum or dad going. Luckily, it did eventually improve with 6 months of prophylaxis abx but was the last symptom to improve. Even now DD doesn't have the confidence of her peers. They are all having sleepovers etc., but DD isn't anywhere near this. Take small steps and try not to show how frustrated you are (hard as this is). It rea
  18. Your post made me cry because I could have written it about my daughter. She is now 6 and I need to tell you she is doing well. The dreaded PANDAS (or maybe PANS) hit us when she was 4. She woke up one morning with all manner of crap going on. Tics were so bad she couldn't walk or use a pen properly and forget sitting to watch her favourite programme or eat a meal - she just squirmed around constantly in a state of unrest. She also blurted random meaningless stuff and constantly shrugged her shoulders and grimaced her face. She was so anxious she wouldn't leave a room on her own and all
  19. Hi everyone, I am reaching out for my own sake this time. DD6 is doing great . 2012 at age 4 major onset of overnight tourettes, scared of everything with huge separation anxiety: diagnosis probably TS+. 2013 prophylaxis erythromycin started and doing better with a few minor flares. 2014 - 95% good throughout the year with only some break through minor abnormal movements, anxiety and a bit of OCD (no more than me!) but very manageable. I know this sounds good. The real scary stuff is 2 years behind us. DD has made so much progress and is getting quite the social butterfly. Me
  20. Has anyone experienced behaviour related to gender confusion in their young PANDAS child? My DD6 wanted to be a boy from age 3-4.5 (before I knew about PANDAS), but it disappeared when other behaviours improved with the antibiotics - she even went all girlie for 12 months. Now school uniform issues (wants to wear what the boys wear) have crept back in mildly, together with some clinginess, noise sensitivity and odd body movements. I believe she is having a mild flare at the moment. School are testing her for Asperger's which I personally don't mind if it gets her the help she needs. I hav
  21. Stumbled across this tonight whilst searching for answers yet again. Scares me. DD been on prophylaxis just over a year with good results (95% better, 5% is manageable). Can anyone chime in and give me more hope? Thanks, ADDENDUM: we have followed several patients in whom the initial antibiotic treatment resulted in complete resolution of symptoms for almost 6 years. Unfortunately ALL of these patients had recurrence and had to be treated with IVIG. Thus it is our experience that all patients with pandas will eventually become antibiotic non-responders......
  22. I won,t go into dd6's entire history but i have no doubt she is pandas. Huge overnight onset at 4.5, tourettes, major anxiety, frequent urination, obsessions, aspergers traits that wax and wane. History of many strep throats. Abx prophylaxis began august 2013 using 500mg erythromycin daily since. Symptoms well managed and minor flares much less. However, 2 weeks ago sore throat, tummy ache, headache one day only. Fatigue and mild temperature couple days. Came to nothing much. Week later sskin coloured fine rash appears on neck and stayed for 5 days. It felt rough to touch. We now have mild fac
  23. Today and yesterday my dd6 starting ticcing again after 10 whole months of barely anything. I know she is very anxious about starting school after summer break but she also has a fine rough pink rash on her neck. Last week was one day of mild sore throat followed by on/off headache and tummy pain. Neither symptom came to anything and she never had a fever. The kids she has been playing with have been a little off after their dad got tonsilitis a fortnight ago this doesn't appear to be strep and she is on prophylactic erythromycin since last August so shouldn't be. Doc thinks viral rash. I trie
  24. I feel like writing this today - for my DD's pediatrician and for all of you on this forum. Thank you Mr C - for putting up with my relentless pleas for help, the endless emails and offerings of information which you read, for fitting me in for an emergency appointment when you were already overdosed with waiting lists and appointments. Thank you for bothering to find out about PANDAS even though you admitted knowing very little. Thank you for believing in me and for prescribing the prophylaxis abx, despite what our GP decided. Thank you for answering my emails and for accepting my phon
  25. DD6 is having a minor backslide at the mo. Nothing too disrupting, but more emotional - crying if someone's face shows pain or if they are upset/annoyed, mild stuttering and this whisper-repeating thing she does occasionally: she will say something and then whisper it back to herself. It seems as though she is checking out what she said. I believe it is called palilalia. Is this a PANDAS symptom too, or are the stuttering and repeating something separate?
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