It was a long shot but I felt I needed to have Z seen by the neurologist who specializes in PANDAS. Especially since the doctor was here in Phx (no planes involved) When I read about PANDAS it seemed to fit but I want answers and hope like every other parent. So I asked the pediatrician and psychiatrist if I should check it out and they both said yes. It took three months to get the appointment and I was still thinking that at the appointment the doctor would say "no, Z doesn't fit the profile for PANDAS. Imagine my surprise when the doctor said she thought I was right and Z had enough indicators to start treating her for PANDAS. Gave me the scripts and protocol and ordered the blood draw that involved 10 vials of blood. (Z was a trooper during that).
Just when we were feeling really hopeless about her mental health issues that have really taken over our lives, we get a little hope. I keep thinking "what if.....". What if this really works and behavior isn't the major focus of her life. I can't really allow myself to think about it too much because PANDAS is really quite rare. But like I said to the doctor, Z is just weird enough with so many unanswered issues that maybe, just maybe.
Another glimmer of hope this week too. There was an interview on NPR about a new diagnosis for a segment of kids with bipolar, called Fear of Harm. Kids with extreme fears that are manifested by extreme rage and aggression. A small group of these kids have been treated with Ketamine and it's been a miracle for them. The Juvenile Bipolar Research has done the study so I got information about it before the interview. Does that fit Z? Possibly! I'd call her behavior on that recent, attempted trip to LA an extreme response, maybe to a fearful situation for her. But at least it's more hope for kids whose lives are condemned by their extreme behavior.
Might try this trick I heard today, about a young lady who has Rhett's Syndrome. She has a business size card that she hands out that says she has Rhett's and sometimes her brain makes her have bad behavior. On the back it explains about Rhett's. Maybe I can have cards for the next plane ride that I pass out ahead of time as we board the plane, "Hi, I have bipolar disorder and I'm sitting in row 15 and I probably will scream and kick the entire flight. I'm deaf so I won't know how loud I am. My behavior will be so bad that you will have to sit in your seat while paramedics and police help my mom get me off the plane when we land. But sometimes I'm fine. We're hoping for a good flight. Thanks, Z (I will put a very cute picture of her on the card). I know that's my sick sense of humor but sometimes that and hope from PANDAS keeps me going.
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