Hi there!
Our daughter is now 7 and has been on zithromax for about 2 years now, 250 mg 1x/day. This is per Dr. T who we visited back when we first noticed her tic and behavior issues. For most of this time she has been relatively stable but lately is melting down over nothing and having the scary thoughts again. Now, we have just built and moved into a new house and went on a big family vacation...both good things but still things that
changed the "normal" routines which can be stressful. I know we should get bloodwork done again but we had a hard time getting in to see Dr. T as he is very busy....are there any other really good PANDAS Dr.'s in the CT/NY/NJ area (we are in CT). I worry that we may be undertreating her for the PANDAS but I also worry that maybe it's NOT and that she might actually have some other issues that we are not pursuing since we believe it to be caused by the PANDAS. I am torn between thinking that she can't help it when she will completely lose it and start slamming doors, screaming, hitting and being verbally abusive to us and her little sister and thinking that she can control it and is just trying to control us....We try to be consistant and give her one warning about taking away a privilege and if she continues we take it away. But, lately she is losing a lot of things which she hasn't over the past say 6 months....I guess I am just looking for some advice on what the next step should be.....she definitely needs the abx to be OK, we have tried to skip a day here or there and she goes downhill FAST....so does that difinitiely mean PANDAS? I am just so worried that we should be looking for something else but we did 2 rounds of blood work for Dr. T and nothing really jumped out at him. She has always had dark circles under her eyes which get worse from time to time and yesterday after being fine all day, had a huge meltdown just before dinner and then fell asleep for around an hour at 6pm. When she woke up she was fine and appoligized for her behavior.....I took away a major privilege and I guess I am feeling guilty since I just don't know in my heart if she has control over it.......very sad situation all around......
Thanks for any suggestions you may have, Kathy