swim Posted January 18, 2011 Report Posted January 18, 2011 Our DS12 has been dealing with PANDAS symptoms for 7 to 8 years and the tics have always been movement related. We are currently in a flare up of symptoms and his tics have changed from movement related to vocal for the first time ever. Does this mean anything to anyone? It is so hard to stay positive and my unmedically trained mind is afraid that the change to vocal tics means a different part of his basal ganglia is being affected so maybe we are losing our battle. Thoughts?
Phasmid Posted January 18, 2011 Report Posted January 18, 2011 I don't mean to scare you, but when my son's symptoms changed from only motor tics to vocal tics, things got much worse very fast. I am only guessing, but my theory is that as the child ages, different centers of the brain are affected. What treatment does your child receive? The GOOD NEWS is that my son's vocal tics (may have been compulsions but I don't know how a vocal tic is differentiated from a compulsion) resolved with antibiotic treatments.
swim Posted January 18, 2011 Author Report Posted January 18, 2011 I don't mean to scare you, but when my son's symptoms changed from only motor tics to vocal tics, things got much worse very fast. I am only guessing, but my theory is that as the child ages, different centers of the brain are affected. What treatment does your child receive? The GOOD NEWS is that my son's vocal tics (may have been compulsions but I don't know how a vocal tic is differentiated from a compulsion) resolved with antibiotic treatments. Thanks for your reply - don't worry about scaring me because I am already scared. Feedback from everyone on this forum helps to figure our way through this maze and denial is not a good thing. I have learned to just face it smack on no matter how bad it hurts. We have been on abx (keflex) since June 2009. We tried amox in Sept when we had a horrible flare in tics. It seemed to help for about a month, but then we went back to keflex as amox effectiveness seemed to diminish. With the change to vocal and no improvement on keflex, we changed to amox again on Sunday night. We saw some improvement last night (after an epsom salt bath too), but seemed to go back again this morning. What antibiotic did you use with the vocal tics? Did you use any other treatments besides antibiotics?
Fixit Posted January 18, 2011 Report Posted January 18, 2011 I don't mean to scare you, but when my son's symptoms changed from only motor tics to vocal tics, things got much worse very fast. I am only guessing, but my theory is that as the child ages, different centers of the brain are affected. What treatment does your child receive? The GOOD NEWS is that my son's vocal tics (may have been compulsions but I don't know how a vocal tic is differentiated from a compulsion) resolved with antibiotic treatments. I pretty much agree... the real problem is..no one really knows... ds vocals came in when we started biaxin and a steroid at the same time..not having been on a steroid before..i think he should have been on abx for awhile prior... ds shortly after that was tested with igenes with some pos and ind readings..band 39 being very indicative... did not follow throught till recently... vocals always remited with vanco (gets in the gut) but came back each time...and we did another abx that did well but did not hold... did parasite cleanse in dec and thing on the vocal range are very good.....that leads back to the gut area... there is a thread on the lymes side that talks about the vagus nerve and can be inclined..i believe toward some explanation of vocals.. when we met our first DAN..he even suggested gut/vocal correlation
Phasmid Posted January 18, 2011 Report Posted January 18, 2011 I know what you mean! So your child has not been on Azithromycin yet? It works great for my son. Our son's case is kinda baffling. Although he had very well documented strep pharyngitis history, things are muddied with more going on than strep probably. Going from most recent to back to 2003: May 2010 to present- Behavior issues and obsessions/compulsions related to PANDAS respond very well to azithromycin July 2010- Behavior issues respond well to steroid taper (30 days prednisone starting at 40mg) Dec. 2008/January 2009 - Sudden onset OCD after possible pneumonia and/or strep pharyngitis (coprolalia, facial motor tics) responded nearly overnight to Flagyl and vancomycin. Well enough to return to school after three weeks. He was on these antibiotics for Clostridium difficile positive stool test. I don't know if it was coincidence, or if this chronic C. diff. infection caused the neuropsych. symptoms. Anyway, symptoms resolved! April, 2004- Horrible, terrifying, grotesque sudden onset chorea, OCD. It started with facial tics, compulsions to look upward, then turned into full blown chorea, then retracing compulsions, and lots of types of OC behaviors. While getting worse, he was put on Nystatin in July for supposed Candidiasis. Symptoms gradually resolved from July to October. Some compulsive behaviors sustained. No motor or vocal tics that we recognized, but may have been there until the new episode in 2009. April, 2003- sudden, overnight onset of chorea type movements that involved trunk twisting. Resolved without treatment in about two weeks.
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