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Rylee's Story 

3/5/2022

The Honorable Jim Patterson

Capitol Office

State Capitol
P.O. Box 942849
Sacramento, CA 94249-0023

RE: PANS/PANDAS Insurance Coverage Legislation 

Dear Assemblyman Patterson:

My name is Rachel, a resident of Fresno County. I am writing to ask for your support of the Pans/Pandas legislative proposal.
My daughter Rylee has suffered from Pandas since age 8. I took her to the doctor because of weight
loss, difficulty chewing and swallowing and OCD symptoms. Her pediatrician said it appeared to be
Pandas, tested for strep, and treated with antibiotics. This happened three years in a row and then
seemed to be gone. She had residual OCD symptoms and anxiety but was sent to be treated in mental
health. When she was 16, the Pandas returned overnight. One day she was an outgoing, 3.5 GPA
student who participated in school events. The next day she was having severe motor/vocal tics,
hallucinations, memory loss, cognitive issues, debilitating OCD, insomnia, depression/anxiety and unable
to attend school. I could not find a doctor to treat her through my insurance, not even the one who had
diagnosed her years ago, they kept sending her to mental health. I filed grievances several times to get
outside referrals and was denied. I went to outside providers and came back with treatment
recommendations and those were denied.


I spent the next year trying to get treatment for her. I went to UCSF and paid for a neurology
consultation and recommendations out of pocket. My HMO would not accept the recommendations or
diagnosis and I could not afford to continue paying for care at UCSF. I then took her to a specialty clinic
in Arizona that is affiliated with a university teaching hospital. I once again received recommendations
and took them back to her doctors. The treatment recommendation was tiered and included IVIG if the
less invasive treatments did not work. These recommendations were again denied by her doctors, one
even told us that he would not follow the recommendations because “how could he know if the person
we saw was really a doctor.” I sent him the website, the doctor’s information and had the clinic send
him a letter, yet he still refused to treat Rylee. At this point I was exhausted, frustrated and had lost
faith in our healthcare provider so we purchased secondary insurance for her for $450/month to provide
more options.


It has been more than 3 years since her Pandas has returned. She is now almost 20 years old and still
struggling to find proper treatment. Instead of attending college or working, she is at home struggling
to get through each day. She suffers with chronic pain, infections, and most recently has had difficulty
walking with frequent falls and must rely on a wheelchair to get around. She still suffers from OCD,
motor tics, anxiety, memory loss and cognitive issues.
My family spends thousands of dollars every year on specialist who don’t take insurance, labs and
medications that aren’t covered. It’s been almost a year since I had to leave my job as a Registered
Nurse and take an on-call position, giving up my family’s health insurance and my pension, to be a full-
time caregiver for my daughter. My family, especially my daughter and myself have suffered trauma
from the medical community, being told that Pandas isn’t real, and she needs to go to psychiatry. My
entire family have been traumatized watching my daughter suffer and progressively deteriorate despite
our best efforts to get a doctor to treat her.

My hope is that this legislation will provide treatment, awareness and advocacy for children with
Pans/Pandas at early onset to provide the best possible outcome, and that they do not suffer for years
like my daughter has.


Thank you for your consideration,


Rachel S.

93727

Fresno, CA 

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