Missbusy1

I am very frustrated with the white paper and it will only make things worse for presenting my sons case. The doctors in my town dont even want to discuss pandas or have an educated discussion regarding pandas.. His major symptoms are tics, urinary issues, depression during exasperation and anxiety. Only mild OCD. I am infuriated knowing that he won't qualify under these terms and will always have to pay out of pocket for his medical treatment. His quality of life is too important for me to just label him as TS and put him on serious medications without solving the problem. Why do I bother taking him to a neurologist when they don't run any lab work yet will diagnose in such a short visit? My opinion of dr. Swedo at the present is not as positive as the rest. According to the white paper, I should just move on to the tics/tourettes forum. Not happy and not willing to wait to find out if she really is an advocate for my son that is lacking the major OCD symptom. I apologize if this seems too negative but the whole process of dealing with multiple doubting doctors has me a bit discouraged.

Yes. I ordered mine on amazon. Not sure if it is the most accurate since we have yet to get a positive. (just ordered last month). I have been taking my son once at least once a month to the doctor to get a strep test and was tired of paying the office visit cost. I have been testing him once a week and so far everything is negative. I also tested everyone in the household. That being said, there have been times where his strep shows up only on the 48 hour culture and that can only be done at the doctor. Of course, if I feel like he might have it, I will go straight to the doctor regardless of the home test. I will post in the future with results and brand once I confirm their accuracy. My son doesn't mind getting swabbed and it just makes me feel better knowing I have it on hand. The doctor bills keep adding up and the cost of home test was very inexpensive. This is probably frowned upon but I need every ounce of ammunition when I see my pediatrician or neurologist since they just consider him to have a "tic disorder and anxiety that waxes and wanes and just happens to occur when he iis positive for strep). Yeah, right!

I can't wait to see the agenda and speakers. It will be so nice to meet others who have gone through this experience. Once all info is posted. I will book my reservations.

Please keep us informed. I am interested in attending.

This is my first post. My husband and I have been dealing with my sons illness (age 6) since May 2011. The past 7 mos. been the hardest time for our family and we are still struggling with all of the many doctor visits. My son came down with ALL of his symptoms in May and we had no idea that our world would change. his major symptoms are tics and anxiety but has had many others such as frequent urination, separation anxiety, new fears and worries. One day coming home from the neurologist he told me he wished he could be born again into another body. He also stated that something took his happiness away. I have been so sad, depressed and hopeless since the drs. Consider his 3 positive strep tests a coincidence. our next step is to go out of state to meet with a specialist that knows about pandas. Anyway, I just want to thank this board for helping me realize that I am not alone and to start appreciating those around me that truly care about my son and illness. Apparently, the many doctors we have seen do not and haven't even called to check on him. A few weeks ago my son's teacher(one of the most loving human beings to grace this Earth) called me and said "I think you need to come get him, it's been a bad day.". She had been observing him and his facial tics were overwhelming him and he couldn't stop. He finally raised his hand and said "call my mommy, I can't stop my tics". Once he was in the office, she told me with tears streaming down her face that she will give him all the love and hugs she can to make him feel better at school. On the car ride home, the song "God gave me you" by Blake Shelton came on the radio. The lyrics fit my son and his angel of a teacher and I would just like to share it with people that will understand. God Gave Me You I’ve been a walking heartache I’ve made a mess of me The person that I’ve been lately Ain’t who I wanna be But you stay here right beside me And watch as the storm blows through And I need you Cause God gave me you for the ups and downs God gave me you for the days of doubt And for when I think I lost my way There are no words here left to say, it’s true God gave me you Gave me you There’s more here than what we’re seeing A divine conspiracy That you, an angel lovely Could somehow fall for me You’ll always be love’s great martyr And I’ll be the flattered fool And I need you God gave me you for the ups and downs God gave me you for the days of doubt And for when I think I lost my way There are no words here left to say, it’s true God gave me you Thank you to all of you who have helped me in my search for knowledge and strength.