Possible PANS/PANDAS or Tourette's

[tictictoc]

Hi everyone

I have been reading the posts here for almost a year now, which has been so helpful in many different ways. I finally found the courage to post and share our story. I will really appreciate the input of those who have had similar experiences. 

I have a 5-year-old daughter who developed tics around May 2018. Prior to that, I do not remember her having any tics, compulsions or repeated behavior of any sort. I will try to keep it brief. 

She had chickenpox in April 2018. Looking back, she started facial grimacing, touching cars, getting upset because she had to be the one to close the car door quite soon after chicken pox. I did not think much of it. 

At the beginning of May, she had an accident which resulted in nose trauma. By the end of May, it felt like, overnight she developed face stretching/squeaking noise/snapping jaws. I was devastated as the first thing that came up on the google search was Tourette. Her tics were constantly changing in the combination of multiple motor and vocal tics. We visited a couple of neurologists who all diagnosed her with provisional tic disorder and told me that there was nothing that could be done besides to just wait and see if they last for more than a year. That's when I remembered that when we visited my husband's dad and his half-sister, they had both vocal and motor tics. But they do not talk about it. When I asked if any of them had a diagnosis, his step-mum said that the daughter's tics started when she was young, they even had MRI done and were told to ignore them. I would say her case is quite mild (unless I saw her when she was in the waning period) because she is going through puberty and has simple motor and vocal tics. My father in law, more understandable, he grew up in the 70s and not many professionals knew about Tourette's or diagnosed it, they were just called tics. For that reason, I never entertained the thought of PANDAS as I thought this must be genetic and this was the card my child was dealt beside that her dad is tic free. Fast forward, her tics calmed down by end of October but really came back with vengeance by end of January. By the end of February, she was prescribed antibiotics for her UTI and 90% of her tics subsided. So, I thought, it won't heart if I take her to a neurologist (U.K Based) who is PP friendly. 

Dr. K told me that decrease in tics after antibiotics would suggest the possibility of PP and she ordered blood tests, nasal swab, throat swab, and perianal swab. She was also put on co-amoxiclav for a month, which reduced her tics farther, she only has throat clearing tic. Although, I am not getting my hopes up as it might just be a coincidence. However, I got the results today and they are the following:

A.S.O Titers - 555.3 (normal range is <200)

IgE - 73.9 (normal range is <48)

Anti-DNase B -  393 U/ml

Nasal Swab showed: Moraxella catarhhalis

                                      Streptococcus pneumoniae 

Throat Swab showed: Staphylococus aureus

Perianal swabs showed: anaerobes

So my question is that even if you have a family history of tic disorder can tics still be initiated by infections triggers? Or this is just a tic expression mediated by infections triggers which are commonly observed in Tourette's population. I am quite confused as they do not seem to differentiate between Pandas tics and Tourette's tics as most academic papers suggest that Tourette's kids have immune issues anyways.  Anyone who has a family history of possible Tourette's but has had success with tics by treating infections would be much much appreciated

 

 

 

 

 

[Chemar]

Hi there

I just wanted to welcome you to the forum tho sorry for your child's struggles.

Hopefully parents more knowledgeable than me re PANS/PANDAS will soon reply, but my understanding is that Tourette Syndrome and PANDAS are not mutually exclusive, and that yes, some kids are dx TS when in fact it is PANS

[tictictoc]

Hi 

Thank you for the reply

I hope someone with a similar experience replies as we are in the middle of figuring out whether it is TS or PP. She is on antibiotics for one month and that is worrying me a bit what if I am giving her antibiotics for no reason and actually doing more damage than good. But another thing is that she has quite a bit of strep going on in her :)