ShannonOtown

I asked my doctor (Neuro Psych) last week what my son can use and she said his Nasonex and Zyrtec are fine, but DONT use the Singular. I guess there has been a correlation with Panda symptoms increasing with Singular (I threw a 3 month supply away). It's frustrating b/c his eye tics have gotten really bad the last two weeks, and I have to believe it's his seasonal allergies kicking in...

Michele, I thank the angels everyday I found her! I sent her an email with my sons timeline and symptoms and her dept called the next day and invited us on her Cefdinir Study (of course after she dx him). We are completing the study in the next 2 weeks. Because it's a study, we're not sure if we were actually on the antibiotic or placebo. My son's mood changed and hand washing improved, but the ticcing, night anxiety and frequent urination remained the same (up and down). He's 11.5 years old, so I think just him knowing what was going own and being able to understand his symptoms really helped his mood improve. (And mine). Dr. Murphy is on to the next option, which might be Augmentin. We're going to the immunologist on the 22nd, so she might be waiting for those results before making a decision. I eager to get started...

My son is seeing a Neuropsych in St. Pete, FL. He went through different physical test verses written question/test. She also is referring him to an immunologist that works in her center. My son has an appt on the 22nd and I can't wait to see what's next. It's nice to work with a Pandas specialist that has collegues/specialist in the same medical center so they can colaberate together on the result. You will see in the link, the center specializes in PANDAS. http://www.allkids.org/body.cfm?id=885&fr=true#

I agree. I just get nervous that a throat culture might not prove I'm a carrier (a negative/positive result) ... but I have read it's a 100%. So like you mention, just treat everyone. On the other hand, it would be nice to know if one of us has been holding the smoking gun the entire time. Blame the dog!

My son was dx this past Summer, so we are currently making our rounds of testing everyone in family for strep. I just recently tested my non-pandas daughter and I'm getting cultured myself in the morning... husband is next. My primary physician reminded me today to test the dog, which I have heard many times on this forum. In fact she suggested that the dog get tested first! Has anyone found their dog's test positive? Is throat culture enough to test for carrier? Primary doc suggest sinus swab/culture, since strep can move around the body?

Faith, My son is 11, but when he was younger he would do this... at Christmas time it would drive me crazy b/c he would rearrange all the decorations. It is an OCD symptom and having things just perfect in their minds. You would find all the ornaments on the tree in a nice perfect line. I had to learn to live with it . My son also has the ritual night time 'checking' and having things in the right order and perfect place before he can climb in bed. Our doctor said if your son can't fall asleep b/c the closet door is cracked (or things are in the right order), and it causes great anxiety, then it is an OCD symptom.

Pushing for answers, debating facts and questioning ideas is the root to finding solutions. The more we ask 'Why', the more we spark ideas in the minds of researchers. I have to believe more than just moms and dads post to this forum. Hopefully our 'What Ifs' will start the wheels turning with doctors and researchers. We are the ones living daily with PANDAS, keeping journals, tracking symptoms and correlating them to other factors, therefore we as parents might be the ones to find a cure... or jump-start the research process. We are passionate about helping our kids and our convictions will pay off. I enjoy reading everyones views. Thanks to the advanced members keeping on top of everything. Shannon

My son has been 97% symptom free (some eye tics) for 3 weeks, until last night, I could just tell we were going to have a rough night. His urination issures hit, high anxiety, sad, and bad cough and clearing his throat. After reading this forum, it made me think that someone must be sick. How can you go 3 weeks perfect, to a sudden bad night. Sure enough, his sister woke up this morning and vomited while brushing her teeth before school. Turns out she has a tummy bug of some sorts, but all better tonight. He thinks it's 'cool' that he has some type of sickness radar. I guess that a positive way to look at his PANDAS. He's my super-hero. It how amazing that our kids are so sensitive?

It had been 3 years since my son (now 11) was having so many symptoms. I took him to the eye doctor twice for his blinking, then to the allergist numerous times for the blinking, the urologist for his urination issues (had surgery to enlarge his pee-pee hole), the pediatrician for allergies (coughing, upper resportory issues, etc). Never seeked advise for the hand-washing and ocd items. It wasn't until this past July at 2 am in the morning, after a rough night of my son going to the bathroom non stop, that I finally found the answer. I was determined to seek the internet for the answer and I wasn't going to bed until I found what I was looking for.... I Googled so many searches, but I finally I had my big moment when I seached "frequent urination and OCD". Don't ask me why I put 'OCD', but somewhere in the back of my mind I thought my son's perfectionism and love for routine was a little excessive for his age and the hand washing had become out of control. I'm sure we all had that moment of Oh My God ... the screen results filled with the word PANDAS! I couldn't believe there was an actualy name that matched my son to the tee. So 3:30 am on my couch, in the dark in my living room, I had put it all together... sitting there crying and shaking trying to wrap my head around the last 3 years. And we all know what happened next.... non-stop research, visits to the pediatrian with the puzzled looks and suggestion to go to another urologist, trying to find a specialist, etc. Finding this forum has been my anchor (I only read and never post) and getting lucky enough to grab an appt with Dr. Murphy in Tampa, FL. So many questions still go unaswered, but atleast we know we have so many parents pushing for results.