Lydiasmum

Thanks for your responses. We did have bloodwork done but far too long after the episode and waned. Everything negative. My paediatrician has told me not to get too hung up on blood results as they don't provide definitive 'answers'. I am happy to accept this as it was absolute trying to draw blood from DD, really traumatic for all involved! 3bmom, can I ask how your child is nowadays. You say 2 years on the same abx my DD is taking.

My DD (5.5) has "possible PANDAS" with added "tic disorder/anxiety" diagnosis currently (it's a start!). She is taking prophylactic Erythromycin and has been for 5 months. Currently she is 90% good. She seems to either have the OCD thoughts/major emotions/acute anxiety OR the bad motor and vocal tics (rarely together, thank goodness). Like something has to come out one way or another. Can anyone else relate? Other symptoms she has waxing and waning are: dark circles under eyes, a vacant look, lack of eye contact, bouncing hyperactivity, squirming in her seat, stiff piano like finger movements, relaxed demeanour to fight or flight mode in the blink of an eye, dilated pupils, bouts of frequent urination, poor motor skills and sensory sensitivities (particularly noise). She is also being treated for a lazy left eye (since 6 months old) and even the orthoptist is confused about the strange fluctuating pattern her squint will take in between appointments (never experienced anything like it in her 15 years on the job!) I remember age 3 behaviours which I now know were tics (lip-licking, funny repetitive noises, rapid eye-blinking and shoulder shrugs) but we had the explosive overnight 'tourettes' and increased anxiety at 4.5 yrs. She has a history of lots of 'viral' sore throats with high temperatures and rashes whilst in nursery aged 3-4. The school are putting her forward for an Asperger's assessment this year due mainly to 'quirkiness' and excessive fear and sensory problems in the school environment. She finds it hard to socialise with groups of friends, although she does well in this area if one or two friends are invited to our house where she feels comfortable. She also struggles with fine motor skills/planning. Her strong areas like gross motor and reading and literacy are outstanding, but she still cannot use cutlery or dress a doll. Some rare days she is soooo 'normal' and she even looks different - good eye contact, eyes that seem synchronised with (a rather gorgeous) glint in them like she is actually looking at you and seeing you clearly for the first time. The only thing never gone completely is separation anxiety and fear of change, although mild and manageable during good times. I find myself thinking definitely PANDAS without a doubt - to probably aspergers with all the co-morbid tourettes, anxiety OCD etc., OMG! - I need to find some sort of inner peace and get a grip for the benefit of my child. I am mentally exhausted after researching all of this for over a year. As for the antibiotics, they are helping. She has never been quite as debilitated as huge first noticeable flare at 4.5, although she has had a few minor episodes since then. In an ideal world, I would not choose to continue with them but her paediatrician is happy to prescribe them for now. How long will be sufficient? He seems to be taking advice from me (!) from what I have read and has admitted he knows very little of PANDAS. I am scared to stop the abx. With all of your experiences on this board, just wondered if there are any similar stories out there or any advice someone could offer. Thank you.X

I'm in definitely. Prayer never really used to factor in my life until PANDAS hit our family. I used to always wish to win the lottery.....not any more. I often visit my local cathedral and light a candle for my daughter and all the other children and families having to struggle to cope every day. We must remember something good will always come from something bad - we now appreciate the good times so much more these days and never take them for granted. Sending you all lots of healing good wishes. x

This post interested me as my daughter (highly suspected PANDAS case) was put on antibiotics immediately after birth due to complications with her delivery and her being very sick. Ironically, I have suffered an auto-immune disorder myself for the past 12 years - chronic hives and joint inflammation flare-ups. These problems began for me after a severe chest infection which took 3 courses of abx to clear up..... coincidence?

Hi all. I am a newbie to this Forum and hoping somebody may have some helpful advice for our situation. Forgive me if this is a long read.... My daughter is nearly 6 years old. She has always been 'different'. Having had a complicated birth and having to be resuscitated, we put her early troubles down to this. She hit all milestones late (walked at 20 months, ate solids at 2.5 years). She is a high-energy, bright little girl who has trouble keeping still and talks a lot (at high speed!). She needs to exercise regularly to keep herself in check and has sensory processing problems (mainly with noise). She is currently diagnosed with Sensory Processing Disorder and is being treated for lazy eye (with patching). Her SPD symptoms have always fluctuated in severity but have always been present. The school is putting her forward for an Asperger's assessment due to her high anxiety, heightened emotions (cries a lot over seemingly trivial things) and difficulties settling at school. She does get extra help and has a SEN statement and IEP, but still struggles despite this. To cut a long story very short, on 15th September 2012 (I will never forget that day!) my daughter woke up with what appeared to be 'Tourettes' - multiple vocal and motor tics which escalated over a period of weeks. It was for the entire family and we felt so helpless. Paediatrician could only tell us to sit it out and wait (but it would likely be TS and ADHD). We were devastated. My daughter could no longer attend school for whole days, her separation anxiety was through the roof and was no longer in control of her body. Prior to this crisis event, we had been on holiday (a month previous) and she had what appeared to be a urine infection. She was peeing literally every 5 minutes for nearly 2 weeks. No infection could be found and this seemed to correct itself eventually (but no clear explanation). Two months previous she had been quite ill with a sore throat and tummy pains - in fact her entire year at nursery was rife with high temperatures and sore throats (sometimes with sandpaper rash over torso). Always put down to 'a virus'. No treatment ever given. Apart from this, I do remember seeing the odd 'tic' when she was at nursery (lip-licking, eye fluttering and some shoulder-hunching, but nothing very concerning at the time). The awful overnight tourettes that developed lasted just over 2 months and very gradually the tics reduced and nearly diminished completely, however severe anxiety did remain as well as some intrusive thoughts that waxed and waned over the next few months. By March she was back to her old self and we dared to relax a little and put events behind us. Then, in April we had another sudden bout of increased urinary frequency - school reported 11 trips to toilet in an hour. Doctor again confirmed no infection treated and took blood tests to check kidney function. Everything was normal and no explanation could be given. A week or two later the tics and odd movements (body-tensing) appeared again but seemed milder this time. Anxiety and sensory issues increased also. Tics only lasted a couple of weeks this time but the anxiety seemed to stick around. Very emotional this time - sad faces and slow songs made her cry inconsolably. Fast forward to June and things are very good again. July 15th 2013 complains of sore throat. Swab confirms Strep. 10 days erythromycin prescribed. After treatment is completed another day of constant bathroom use takes place - but only one day this time around. All OK until 14th August 2013 - when tics and major anxiety ramp up again. Talk to paediatrician about PANDAS and manage to persuade him to prescribe prophylaxis antibiotics (he knows little of PANDAS but 'believes it a possibility'). The episode seemed to be kept under control with only minor tics which didn't interfere too much with life but the main problem seems to be the emotional lability and anxieties (they are always present to some degree). My daughter continues to take daily prophylaxis (we are now 4 months in). Compared to initial onset, things are OK (we are about 90%). Should also mention that I myself have an autoimmune disorder which causes painful joints and chronic hives during flare-ups. I suppose after giving the life history, my questions are:- - Could my daughter actually only have 'pandas' which makes it appear she may be ASD/Asperger's? Bear in mind she has always been a bit 'quirky'. Could her tics and OCD/anxiety actually be part of the Asperger's or could this all be stand-alone PANDAS? - Does this actually sound like PANDAS? The urinary frequency issue seems to be the part that the autism diagnosis doesn't cover (unless it's an OCD manifestation?) - Is a child with Asperger's more prone to getting PANDAS? Sorry for all the questions and thank you for reading. I have become a very anxious parent since all this happened and seemed to have lost the ability to truly enjoy my daughter - constantly dreading a full-scale relapse. Nikki