Thank you so much for the help,
I do believe in my heart that we are dealing with PANDAS. It was difficult losing the support of her doctor. It was also difficult to have her school administrator look me in the eyes and tell me that I know in my heart that is she has a mental illness. She advised me to set up an app. with a neurologist, psychiatrist, and OT. Her doctor advised me to take her to a psychiatrist. I want to take her to someone who understands what is happening to her and how to treat her. We live in a small area and I don't know of any doctors in our area that treat PANDAS. I was surprised that her doctor even knew about it. He had done a fair amount of research on PANDAS. How do I go about finding a PANDAS doctor? We are on the central coast of California.
Amy were you saying that the fact that she didn't have a rise in titers signaled an immune response problem? Would antibiotics affect how much her titers would rise? I ask this as I had her on raw garlic and olive leaf extract at the time. I was also wondering if that caused her negative throat culture. I did stop giving them to her the day before we went to see her doctor and several days before her blood draw for checking her ASO titers. Where could I find information on the titers not rising due to an immune response problem that I could share with her doctor?
Smartyjones, I am aware that her behavior coincides with the PANDAS symtom lists I have read. That is why I am searching for answers here. I just needed some confirmation from others who have been through similar experiences. I have often wondered over the years if she might have PANDAS. However, her symptoms were pretty mild and she didn't fit all the criteria. Like she never had a sudden onset of symptoms (before this year) that I could remember. Also, she has had many of her issues from birth, and I read that the onset would not have happened until a child is three. I have often wondered about the infants that are exposed. Since their immune systems are so immature I would think that they would be at an increased risk of PANDAS. Especially since they are usually undergoing so many different vaccinations during this time. My daughter received her first vaccinations around the time that my husband had strep (4 months).
I am also aware of PANS. I also have wondered about "mental illness" having it's root in infectious cause. My mother became very ill and had a high fever when she was pregnant with my oldest brother. He then had a bad reaction to a smallpox vaccine he received as an infant. He was taken to UCLA when he was five. They told my parents that he was mentally retarded. At 15 he went into a catatonic state for 6 weeks and when he came out of that he was having phychotic episodes. He was diagnosed with schizophrenia. When I think back now, he had many PANDAS symptoms. He had OCD, ticks, and hyperactivity. He never had rages until he was 15. Very facinating.
My mother-in-law had rheumatic fever when she was a child.
Thank you so much for the encouragement. I have no plans of changing course at this point. I do believe that we are dealing with an infectious etiology. Finding out how to help her is the big concern at this point.
How is your son doing now?