I want to tell my whole story so anyone out there who can help me will know everything and can possible help.. The doctors cant seem to... My son was born 2 months premuture and had apnea, Gerd, and Tracia Malasia. (soft windpipe)2 months later he had surgury for a triple hernia and varicous seal. He was always very frustrated as a child because he had a speech problem untill 3 years old. He always had the on and off cold but never anything serious but his glands in his neck were always swollen. His peditrician said it was normal. At the age of 5 his glands really swelled so we took him for blood work and he was dianosed with Ebstein Bar. Always a little cranky & winey but thats to be expected. He has been fine untill 8 months ago he started clearing his throut all the time, then started sniffing, then snorting. I took him to an ENT who said he was fine. He sugfgested we see a nurologist. In may 08 the nurolight ordered an EEG and blood work. The EEG was fine and he stopped so I never did the Blood work. in July (2 months later) I noticed he starting sniffing again and was darting his tongue out licking his face and would not stop. He aslo was starting to get very clingly and had strange thoughts and always worried about storms and floods (weird things) Would not go to sleep because he was scared. I called to schedule another appointment to get an updated perscripsion for blood work. During the waiting period to get in to see her (6 months) he not only sniffed and licked all the time but then he also started rolling his eyes up and to the right about every hour and never leaving my side.. we took him to the emergency room cause we thought he was havine a seizue, CAT Scan came back fine and so did his blood work. When we finally got to see the nurolist she diagnosed him with Touretts (gave him Tenex 1/2 mg at bed and ordered more blood work. Last week the blood work came back that he had Strep. Why didnt the hospitals blood work show that? She said he has PANDAS and gave me Cleocin 1 1/2 tsp three times a day. Over the past week his symptoms have got worse. He still licks his face and rolls his eyes every minute and now his eyes seem to be getting stuck in the corner and he bends his neck all the way to the side. I called the nuroligst she said increase the Tenex to 1/2 mg twice a day. Yesterday he started bending his neck down all the way to his chest and moving his eye brows and today he started blurting out noises and jerking his body. Eye rolls and neck are at least 3 to 4 a min, tongue is constant and so is eye brow movement. He told me it feels like hes going to explode. I called the Nuroligist but she didnt get back to me because its the weekend I suppose. His pediatrician said we have to let the antibotics run its course. I have been researching the web all day and Than I found this site that says it should stop with antibiatics. Do I need to find another neorlogist or a Infectious Desiese specialist? Does it get worse with PANDAS before it gets better? Has anyone had this happen to their child? Please ... any help I can get right now would be great..
