Acute onset of Tics

[lpop]

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

[Chemar]

Hi and welcome

given the possible PANS dx I would really advise posting on our forum for it as the parents there are very clued up

http://latitudes.org/forums/index.php?showforum=17