Can you imagine what it feels like to have your nine-year-old daughter become a stranger to you? As absolutely terrifying as this sounds, it was a reality for Paula Rydell and her family. Paula’s daughter Grace became a different person as a result of a rare condition she suffers from called Pandas, which is diagnosed after a patient develops behavioral and physical symptoms following a strep throat infection.
INSET: PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response resulting in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, a decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.
After suffering numerous strep throat infections, Grace began exhibiting symptoms of obsessive-compulsive disorder: frequently washing her hands, worrying about germs, not wanting to eat because she was afraid to swallow. Because this is a rare condition that has only been identified in more recent years, it took months for Grace to be properly diagnosed. The onset of her illness was acute, causing severe anxiety, behavioral and personality issues. Paula describes this time as “complicated and terrifying.” She says, “We lost her for a while; she didn’t feel like my child anymore.”
Finally, the Rydells were referred to the Rothman Center in St. Petersburg, which offers an integrated practice of clinical care for individuals with obsessive-compulsive disorder (OCD), autism spectrum disorders, tic disorders, PANDAS, trichotillomania, learning disorders, and body dysmorphic disorder. The Rothman Center’s services are all-encompassing and multi-disciplinary, including diagnosis and evidence-based treatment, education, research, and outreach.
The family travelled from their home in Lake Worth (Palm Beach County) to visit the clinic without realizing that the intensive therapy program required them to stay close by. The Rydells were relieved and extremely grateful to learn there was a Ronald McDonald House nearby that could house them during treatment, which they discovered would be several months long. Since Grace has lost most of her friends because of her disorder, meeting new kids at the house and making new friends has been a big help in her progress.
Paula stayed with Grace for four months in St. Petersburg while husband Mark stayed home with their seven-year-old son, Ryan. The daily treatments made a huge difference, and now Grace only returns once every three months for treatment. She still has a resurgence of her behaviors if she is exposed to other illnesses; she gets edgy, more defiant, and is quick to anger, so her parents have to watch her closely.
Paula comments that the Ronald McDonald House provides a huge cost savings and stress relief for them, which is critical because time off work has taken a great financial toll on their family. “Everyone was wonderful and supportive, they made me feel like I was in my own home,” Paula says. “The beauty of RMH is that people are encouraged to mingle with others. It’s natural for the parents to talk with each other. You start to support each other and lean on each other.” She recalls two little boys who stayed a long time, and when they departed Grace was very sad because they became like her family. Paula says that for Grace it’s like a mini-vacation, and her brother Ryan is jealous! Grace enjoys visiting the staff and seeing the other kids.
Grace is a Girl Scout, and her troop picked the RMH West House as their charity. They raised over $500 from a garage sale and filled the back of the family vehicle with items from the needs list. Paula says this was a great experience for Grace, especially after all that RMH has done for their family.
We look forward to staying in touch with the Rydell family and seeing improvements for Grace in the years ahead.