texanmom

Thanks everyone! We did go this morning for the labwork. She started getting balmy and closing her eyes, but we started fanning her and talking to her and she came back. So it went better than last time! The doctor we are seeing is listed as one of the 'leading physicians' on the PANDAS network site. I feel confident that we are finally headed in the right direction.

Thanks. That is helpful and encouraging. We are going to get prepared and ready for the blood work. Two other questions-- Before getting the appt with the PANDAS doctor, I took her to a second local doctor to see if he would be any help. He wasn't really but referred us for a psychological evaluation (he was thinking perhaps anxiety disorder related to OCD). What do you think about waiting on this until after next week's appt with the PANDAS doctor? Also, the PANDAS doctor discussed an oral, rectal and vaginal swab for strep? How have your kids handled this?

My daughter started having many vocal tics and some motor tics in February. We've seen OCD, emotional outbursts, etc. We hadn't gone more than a day or two tic-free. A pediatric neurologist told us in May he thought it was going to be Tourette's. I read the Natural Treatment book and have been researching online--I wanted to get another opinion. I have an appt with one of the doctors from the PANDAS network web site next week. We will be traveling 4 hours and he has ordered a lengthy list of blood work. For the first time since February, she has now been 8 days with very few tics (maybe two or three vocal tics in a day--whereas before it was one every 20 seconds or so all day). If it is Tourette's I understand this could be the wax and wane. Could it still be PANDAS related with this period of very few tics despite any treatment? Is it worth it to do all the lab work now or does it need to be during more of a flare up? The last time my daughter had blood work she fainted. She was extremely cooperative but it was a little traumatic for her. I want to make sure that when we draw blood, the timing is good and we are looking at useful information.

Yes, I am aware that it waxes and wanes. It is just that at first I was (wrongly) only looking at the onset of tics (which is February). There seems to be an emphasis on sudden onset--and I never considered that this may have started much earlier (several years ago) in a sudden way even though we are just now seeing the tics. Thanks for clarifying that. I have two Texas doctors that I am looking at and am so ready for a doctor to listen.

I just started reading about lyme today. Something else I had never considered.

Thanks for the good information from you both. The vision info is also very interesting and I will look into it more.

I posted recently describing where we are at with my daughter and beginning to look into PANDAS. From the pandasnetwork website, http://pandasnetwork.org/resources/providers/ there are two Texas 'leading' doctors. From searching the forum, I've seen several positive comments about Dr. Rao. Anyone seen Dr. Russell? It looks like Russell takes Blue Cross Blue Shield and Rao doesn't. I understand at some point that we may need to see specialists out of pocket. However, if a "leading physician" does take our insurance, I'd prefer to start there. Thoughts? Dr. Sesgagiri Rao Immunology Plano, TX 972-964-7374 Website Dr. Bruce Russell Integrative Internist Port Aransas, TX 391-794-1930

This February my daughter (turned 8 in June) developed a vocal tic ("humf" sound). Since then it has progressed and changed from variations on that sound, coughing, throat clearing, and sniffing. We've also seen a lot of OCD like behaviors--- lots of routines, must wear multiple exact bracelets on her arm everyday, must have all clocks set correctly, etc. Lots of mood swings. This really intensified this spring although she has always been more explosive, temperamental, etc. She had repeated throat infections and strep from 2-4 years old. Her tonsils and adenoids were removed when she was 4 due to this. During this time she also had lots of night terrors. She has always had frequent urination issues. We took her to the doctor when she was younger. Nothing really resolved but as she became older she just handles it. We also did a sleep study when she was 5. She would come home from school exhausted--have a terrible meltdown, sleep until dinner, we'd wake her up, she'd eat and then sleep through the night. The sleep study came back fine. But she has always required lots of sleep. She is super smart but has really been struggling with reading. She has an appointment to be screened for dyslexia in the next few weeks. After the tics, our ped referred us to a pediatric neurologist in May who told us that he believes it is the beginning of Tourette's for her based on the multiple types of tics presenting and the duration already. (He acknowledged that the official diagnosis requires multiples types for 1 year but that he believes this is the direction she is headed.) Yesterday, I took her to a family doctor in our area--I am not totally sure we are dealing with Tourette's here. I've been reading through the forum and read Sheila Rogers' natural treatment book. I was looking for a starting point on where to begin as far as looking into other causes of the tics. I had heard good things about this doctor being a researching, open minded type but was overall disappointed. He tended to agree with the neuro--although he suggested basic lab work and an eval with a psychologist (he seemed to be thinking perhaps anxiety disorder, stress-related). It was just basic labwork but it does show high NEUTROPHILS and low LYMPHOCYTES. Should this be clueing us in to something? I honestly never really thought PANDAS because although the tics came on suddenly, the overall mood swings and behavioral issues have been come and go since her preschool years. Of course now I am thinking back to all those throat infections--could it have began back then and we are just now seeing tics? I got the lab results online and the doctor hasn't called back regarding them. I am praying that he's researching and putting pieces together. But if he blows it off.. I would appreciate advice on the next step--who to see, what to request. We are in Texas.

Hello! I live in College Station and while my daughter currently has an appointment with a neurologist in Austin (as referred by our pediatrician),I am looking for some alternatives. I would be very interested in your suggestions.

Hi Belky, Did you find a doctor you liked in your area? I am in College Station and so will most likely be traveling to Dallas, Houston or Austin. Our pediatrician referred us to a pediatric neurologist in Austin for my 7 year old daughter--mostly vocal tics. I'm almost done with the ACN book on natural treatment on tics though--and would like for her to see an environmental physcian. I also searched the link provided on the web site and haven't seen any specific mention of tic disorders.