lpop

Thanks everyone for your kind words and openness. It is very clear to me that yes, this is pandas. Lots has happened since I last posted. Some good some bad. My 6 year old little girl has been slowly doing better after 5 weeks of antibiotics. Congnition better, moods better, focus great, sleeping great (still needing uncharacteristic naps) , anxieties nil, tics about 60-70% reduced. We are feeling great about her progress…slow but coming. Our 8 year old son had some acute concerning behavioural changes we were worried about. Depression and acute behavioural changes in school. Worried people don't like him , scared to go to bed,lack of focus and trouble remembering math, and an eye tic. All in one week. Normally a straight A perfectionist child who is well mannered and happy/excited about life. We wondered if it was PTSD from our daughter's illness and dysfunction from home. Didn't put it all together at first…was making excuses for every symptom…..well, low and behold a sore throat appeared….with a fever and he has strep infection with all this. So, looks like our oldest is maybe under suspicion for Pandas. We have him on antibiotics and are continuing with the same doctor to get more antibiotics. unfortunately, where we live we are extremely behind in treatment and diagnosing pandas. This is scary for us knowing this. And our kids have not been officially diagnosed…crazy. But the docs all suspect that this is what it is. Sigh.

Our 6 year old has been suffering from extreme fatigue since this all started….it might be improving a bit, but a child who gave up naps 3 years ago is now sleeping a few hours extra per day in the afternoon as well going to bed earlier. Is this a normal side effect? If so, has it improved as they improved etc?? Thanks

Thank you all for your input. Of course I second guess every symptom….and of course I read into every little symptom..I have researched and read every internet article available I am sure. What is against us? If this truly is a PANS response our local medical community needs to kick it up a notch and get on treatments and research. We (other families and ourselves) have little local medical support. Our medical community lacks the education and drive to treat these kids. Nice to hear other people's thoughts and experiences.

Hello. This is my first post- been lurking and reading as much as I can. I have a wonderful ,almost 6 year old ( birthday in 2 sleeps!!) daughter who on Oct4 woke up to a constant verbal tic (hiccup noise) She had been ill for 4- 5 weeks with what I would say was a virus. -cold cough runny nose etc. After a few days we took her to the doctor and she confirmed this was a tic- but prescribed antibiotics in case this was strep induced (did a swab which later was found to be negative) In about a day, her personality changed . The only way I can describe it was that my healthy daughter turned into a child afflicted with -tourettes, adhd, anxiety and fears, autistic , sleep disruptions/night terrors, and memory loss . She acquired chorea type movements (according to the neuro) , facial grimacing and 3 other verbal tics within a few days...Now this does clinically fit the bill for Pandas or Pans. But in our location, this has never been diagnosed due to lack of education- all children diagnosed have been diagnosed out of province/state. Now my GP did not diagnose her with Pandas or Pans but suspected it- referred her to a neuro who suspected Pans (because strep titre and swab were both negative) but hasn't diagnosed it either. We have been on antibiotics (now augmenting) for 3 weeks. We have seen dramatic improvement in new anxiety, cognition and sleeping. Tics have decreased although we sometimes get a bad evening depending on her fatigue. She is fatigued a lot really- now asking for naps (she hasn't napped in 3 years) and going to bed an hour before normal bedtimes. Now we are in a wait and see type of situation. We are on antibiotics for another 4 weeks and then hopefully the tics will lessen. Does anyone have anything they can tell me or advise me? Is there a good chance this could turn out ok? Will she tic forever? I asked the neuro straight out if this is Tourettes or pans and she couldn't answer = which I totally get, but so frustrating. She did say that typically tourettes patients have family history (we have none) and the child doesn't present so acutely either with the other symptoms . I feel guilty to admit this, but her vocal tics are annoying and embarrassing at times. I try my best to ignore them but it breaks my heart to see her have to pause and struggle to complete a paperwork task she normally completed with no issue beforehand. And this all came up so acutely ,which I almost feel I have post traumatic stress disorder over- seriously!! If this was a gradual thing, I think we could have been more prepared- but it was sudden, and we felt we 'lost' our daughter. I am grieving this personally and need some personal advise as well please !! Thanks

Hello. This is my first post- been lurking and reading as much as I can. I have a wonderful ,almost 6 year old ( birthday in 2 sleeps!!) daughter who on Oct4 woke up to a constant verbal tic (hiccup noise) She had been ill for 4- 5 weeks with what I would say was a virus. -cold cough runny nose etc. After a few days we took her to the doctor and she confirmed this was a tic- but prescribed antibiotics in case this was strep induced (did a swab which later was found to be negative) In about a day, her personality changed . The only way I can describe it was that my healthy daughter turned into a child afflicted with -tourettes, adhd, anxiety and fears, autistic , sleep disruptions/night terrors, and memory loss . She acquired chorea type movements (according to the neuro) , facial grimacing and 3 other verbal tics within a few days...Now this does clinically fit the bill for Pandas or Pans. But in our location, this has never been diagnosed due to lack of education- all children diagnosed have been diagnosed out of province/state. Now my GP did not diagnose her with Pandas or Pans but suspected it- referred her to a neuro who suspected Pans (because strep titre and swab were both negative) but hasn't diagnosed it either. We have been on antibiotics (now augmenting) for 3 weeks. We have seen dramatic improvement in new anxiety, cognition and sleeping. Tics have decreased although we sometimes get a bad evening depending on her fatigue. She is fatigued a lot really- now asking for naps (she hasn't napped in 3 years) and going to bed an hour before normal bedtimes. Now we are in a wait and see type of situation. We are on antibiotics for another 4 weeks and then hopefully the tics will lessen. Does anyone have anything they can tell me or advise me? Is there a good chance this could turn out ok? Will she tic forever? I asked the neuro straight out if this is Tourettes or pans and she couldn't answer = which I totally get, but so frustrating. She did say that typically tourettes patients have family history (we have none) and the child doesn't present so acutely either with the other symptoms . I feel guilty to admit this, but her vocal tics are annoying and embarrassing at times. I try my best to ignore them but it breaks my heart to see her have to pause and struggle to complete a paperwork task she normally completed with no issue beforehand. And this all came up so acutely ,which I almost feel I have post traumatic stress disorder over- seriously!! If this was a gradual thing, I think we could have been more prepared- but it was sudden, and we felt we 'lost' our daughter. I am grieving this personally and need some personal advise as well please !! Thanks