abbe Posted March 25, 2012 Report Share Posted March 25, 2012 hey all, Nick was diagnosed from Dr. t with Pandas last month. He was on Azithromycin for 30 days and during this period he tics were 98% gone, he was sleeping like a baby, cooperative, happy, playful, not emotional, . I was suppose to stop after 30 days and do pulse therapy on wed and Sound. I stopped on Wed. and by Friday his tics were back in his neck and eyes. I have been slightly paranoid about his best friend that he plays with since he tends to get strep but I can't tell him he can't play with his friends. He already doesn't have dairy, eggs and wheat and takes all his supplements , I just can't. I wrote this letter to dr t and I hope he responds. He has responded this past week to my emails. My bloodwork cam in and I had a level 200 for strep. I sent on azithromycin myself. I was on the tic forum for 3 years before figuring out he was pandas. I feel like I am burnt from over thinking and over doing. I am starting to wear down a bit. Below is the letter I wrote to dr. Trif. Nicholas went off of azithromycin on Wed morning after 32 days on it. He was for all intensive purposes tic free. Behavior and sleep perfect. I was planning on doing the pulse therapy wed and sunday. By Friday he was ticcing again in his neck and eyes. It made me so sad to make eye contact with him , I know he was confused why the tics were back, he was so happy they were gone.... On saturday night I gave him a night dose and sunday morning and night. I don't know what my plan should be right now. Was the pulse therapy good for us to use if he was able to maintain being tic free and not symptomatic? I don't know what to do. I also wanted to ask you opinion on my bloodwork and Roberts bloodwork. Dr Chung started me on azithromycin. Got the script from Dr. Chung. . I think nick is out of the azithromycin refill to his script also. If I didn't think antibiotics were bad for nick, in other words if this "pink" medicine were anything else other than medicine I would have him on it every day and night because this medicine gave my child back to me. Tic free, happy, cooperative, non emotional, cooperative and sleeping like a baby. I don't want to feel guilty about keeping him on antibiotics since I know he does have an infection, if he did't then why did it dramatically change him so much?? Is it just that he needs to be on it longer or is it that he is never going to get better since I waited so long to use antibiotics. I am planning on looking into homeopathic remedies aggressively for Nick so I can try to get him better without the use of medicine. My father, who is 91 has been very ill lately and it is hard for me not to know what I am doing with Nicholas since I have the stress of an ill parent and child. Your thoughts and direction in the upcoming months would be greatly appreciated Thanks abbe Link to comment Share on other sites More sharing options...
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