ally

Hi everyone, I am new to this group and recently concluded with the help of my dan that my son has PANS. He had an upper respiratory infection towards the end of february and within 1 1/2 weeks, he had a sudden onset of walking on heels, piano playing like movements of fingers, worsening of ocds which he has on and off but this time it was non stop like facial tics. He developed severe anxiety and mood swings with frequency of urination. His handwriting skills which are not great to begin with were also affected. We placed him on a ten day course of zithromax along with advil. He responded with reduction in anxiety and ocd but symtoms didn't go away. Dan told me to stop the zithromax and continue anti inflammatory in the form of celebrex. After 5 days of celebrex, my son developed severe heartburn and stomach ache. I stopped celebrex and added antacid. He lost his appetite because of reflux and again developed frequency of urination, anxiety, resistance to change, aggresion and screaming tantrums. He still walks on heels if without slippers and this never left him even when on antibiotic. So after talking to other parents, I restarted zithromax and after day 5, he has some reduction in his symptoms and he started going back to school. His reflux is gone. But we havn't gotten rid of agitation if his wish is not fulfilled and we cannot place demands on him. He is following routines. He has a bloated belly and is passing a lot gas. His stools smell foul. Now I am confused as to whether he had a parasite thing going last week as there was full moon and now his symptoms are better as the full moon has passed. Or we are dealing with clostridia or other gut bugs which are giving aggression and ocd and zithro is only partially treating the bugs. Our dan has recommended alinia as his symptoms are more related to gut. Any ideas?? Please help me figure out what I am dealing with here? Could it be PANS related to some pathogen/allergen or clostridia/anaerobes or parasites. His appetite is back now and he is very hungry this week which probably goes against parasites as he should have been very hungry last week. Forgot to mention that his ASO and DnaseB titers are negative. So confusing.

Hi everyone, I am new to the forum. I am also dealing with Pandas/pans flare. My son finished a 10 day course of zithromax. After which our Dan told us to stop the antibiotic and continue some form of antiinflammatory medication. He was responding to advil so he prescribed celebrex as it was relatively better tolerated than advil. I continued the celebrex for 6 days. Now he is miserable with the hearburn/chest pain. He is on a prophylactic dose of 500 mg of zithromax once weekly but I ended up giving him only 250 mg on thursday as too much was going on with him and I forgot the morning dose. I have a feeling that he needs to continue the daily dose of zithro for now. Since we started zithro, we are also dealing with yeast like symptoms or parasites. While he was on zithro, anxiety did get better and some tics improved but after the course ended, the anxiety is back. He gets extremely anxious even if we ask him to go have dinner. He has trouble transitioning. Just wants to stay in bed. Still walking on his heels and has vocal stimms/tics. We are waiting for ASo titers and dnase B titers result. My son has autism and is 8 yrs old. I have suspected pandas for a long time but recently he had flu and had an acute onset of tics and severe anxiety and finally dan was convinced that he does have pans. Sorry my post is so disorganized. I need advise on where to go from here. Should I just continue zithromax for a couple more weeks? Also what antiinflammatory meds/supps have you found successful? I would really appreciate the help. I still don't know how to efficiently use the forum but hopefully will get better. Thanks Ally