Holly West’s PANDAS Story (child testimony)
Ever since I was born, my mother thought I was different. I was always very quiet, and shy,
but an extremely sweet, loving little girl. I can't remember at what age this started, but I
remember having OCD symptoms, that were never diagnosed, but very obvious now. I
remember I was deathly afraid of cigarettes. I thought I would die if I walked by someone
who smoked. It got so bad that my mom had to actually buy a pack of cigarettes to break
them apart to show me that they were not going to kill me; that seemed to help me a lot. I
then had extreme compulsions, that I felt as though I needed to tell certain people that I
cared about honest things that would make them feel bad. I would have to confess to
people that they were fat, or ugly, and I would have horrible panic attacks through all of
these OCD's. I had terrible separation anxiety, and couldn't go to school when I was
supposed to. I started first grade when I was seven, school was always awful for me. I have
social phobia, extreme anxiety and had learning disabilities. I had computer class in
elementary school, and would not touch the computer because I believed I was going to
break them. I had an IEP (individualized educational plan) for learning disabilities/ math
processing, anxiety, and my mom wrote in so I would not have to use the computers. I had
strep throat often, and had had scarlet fever.
When I was 14, I had extreme OCDS. They were horrific. It was like I was living in a
nightmare that I couldn't wake up from. I had a sudden onset over night of suicidal and
homicidal OCDs, and horrible insomnia. My mom brought me to the ER. They thought I
was going through a mental breakdown, and sent me home. It got so severe that the hospital
decided to admit me into a psychiatric hospital. This was the worst thing I ever had to go
through my entire life. I was always an very shy sweet, loving girl, so these thought were
polar opposite of anything I'd ever think about. It was like I was in jail. They removed my
shoe laces from my shoes, I had to write with crayons, they gave me plastic silverware, as
they did all these things they made my OCD thoughts worse. I got more ideas, and the fact
that I was away from my mother with sick children made everything worse. The doctor I
saw there noticed I had a cough, and wanted to test me for PANDAS, sure enough I had a
positive strep test, and very high antibody level, he said it all made sense. The sudden onset,
these obsessive thoughts, I was put on antibiotics, and three different psychiatric drugs, and
was finally diagnosed correctly and was able to leave after 8 days. I was still not feeling
better, I was then admitted to Boston Children's hospital. I had MRI's, spinal taps, tons of
blood tests, strep test, titer test. I had doctors from all over the world, trying to help me.
They all diagnosed me with PANDAS, I had an IVIG, a couple months later I felt so much
better. I went totally off the psych meds.
My little sister was diagnosed with PANDAS at the age of four. She saw a doctor at Tufts
Medical Center in Boston. I told the doctor I'm sure it was what I had. After five years of
feeling okay, I got another PANDAS episode. I started seeing the same doctor with my
sister, I was put back on psych meds, and antibiotics, I only felt slightly better, I wanted an
IVIG, but he said they were too costly. He diagnosed me with autism at twenty years
old(PDD NOS) and my little sister with asbergers. My little sister who is now eight is still
suffering greatly. Our whole family decided we wanted to move out of New England to
somewhere warmer with sunshine to help us, like Florida, because Taylor and I were
constantly depressed. After we moved, I had another episode. I saw awful doctor's in
Florida, that of course never even heard of it, treated me again with psych drugs. I am
twenty two now, I still struggle with PANDAS. I'm seeing a new Doctor soon in Florida,
who believes in PANDAS, and knows how hard of a struggle it is. I have been suffering for