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Lydiasmum last won the day on June 9 2018

Lydiasmum had the most liked content!

About Lydiasmum

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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, 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
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