PANDAS treatment and worsening of tics

[RachaelB]

My son has had symptoms of ADHD for a few years now. Tics developed after I tried him on ADHD meds. I took him off and the tics persisted. We had him tested for PANDAS recently after FINALLY finding a dr who would believe me that I thought he might have Tourette's. He tested positive for Tourette's, has been taking amoxicillin 2x a day for a week now. He has developed an excessive throat clearing tic and is complaining of involuntary muscle movement. Is this normal as the PANDAS is treated, or has anyone else come across this? I live in Melbourne FL and am desperate for any answers as the tics/behavior have affected his ability to preform in school and get along with other children. Thanks so much!

 

Rachael Burrows

[ad_ccl]

Welcome Rachael.

 

I am assuming that in your post you meant your son was diagnosed with PANDAS not TS - as he is now on the amoxicillin as treatment. From what I understand antibiotics would not treat TS patients. Just curious about the testing done and how the diagnosis was made. My son also has PANDAS after a sudden and severe onset - as well as a positive throat swab and very high ASO titers and DNAse.

I do remember before I started posting here there was a PANDAS mom whose son's tics got way worse on the antibiotics - I think her name was Heather - so you may want to search her posts - I think yeast was the problem, or it was the artificial coloring in the antibiotic. He should get better not worse on antibiotics. Often with PANDAS kids - one antibiotic does not fit all - so you may have to try another. Azithromycin seems to work well for many. Also - please think about having him take probiotics since he is on antibiotics. Generally from what I understand most PANDAS kids get significantly better within a few days on the correct antibiotics. That has been our experience.

[Chemar]

Hi Rachael and welcome

 

I was also confused when you said your child tested "positive for Tourette Syndrome" as there really is no definitive test for TS...and so am assuming that you meant PANDAS. Altho people with TS can have intensification of their symptoms if they also have PANDAS, PANDAS as such doesnt "cause" TS, but rather causes tics and/or OCD and other neuro issues induced by the strep

 

As Alison, Ronna and many of the other parents helping their kids with PANDAS have found, azithromycin (zithromax) used prophylactically seems to be producing the best results

 

As you are in Melbourne, I would like to suggest that you contact Dr Tanya Murphy at the Shands Clinic in Gainesville, Florida and ask for a referral to a doc in your area...or even consider the drive to Gainesville to see her...She is at the forefront of PANDAS research, and has a grant from NIMH for her research into it. My son had his PANDAS testing done there, and altho he tested negative, we were really impressed by Dr Murphy and her team

 

Her phone number is (352) 392-3681.

 

Here is more on Dr Murphy

 

http://www.psychiatry.ufl.edu/people/bios/murphy.htm

[faith]

Rachel,

I too am curious about what criteria they based your child positive for tourettes (or did you mean PANDAS)

PANDAS would suggest your child had a strep connection. Was he tested for high ASO titres? If he has been on antibiotics for a week, I think symptoms would have diminished, not escalated. Please clarify this for someone here may be able to help you with more info and direction.

 

Also, some ADHD meds can cause tics to come out in those vulnerable and I believe certain antidepressants can cause this too, and sometimes can be permanent. Please do your own research on this. Is the antibiotic your child taking supposed to be for long term or short term? Also, how old is he?