My name is Angela and I am the mother of Ava a wonderful, smart, easygoing, independent, beautiful little 8 year old girl who is full of laughter and life.
In 2015, a few months before her 6
th
birthday, Ava developed a very bad physical tic involving head and neck movement. A few months before this onset she had a sore throat and croup but the strep titers were not raised. We watched our daughter decline with OCD and anxiety. For example, she developed severe separation anxiety, was having trouble eating certain foods she once loved, she also became very emotional very quickly. One day we noticed Ava was looking around the room and we could see her studying objects. We asked her, “What are you doing?” She said she was “tracing things with her eyes.” We were terrified because she couldn’t stop the behavior.
A family friend of ours is a teacher and she came to observe Ava. That night our dear friend said just to try to get rest and she would go home and pray about Ava. Later that night, we received a text that God answered her prayer saying this was autoimmune. I jumped out of bed and got online. I googled autoimmune diseases in children and the very first thing that came up was PANDAS! Ava had most of the symptoms listed! We were blown away.
In retrospect, our little girl had a history of frequent croup and viral infections. We were told she would grow out of it but she never did. It was as if she had no immune system at all. A physician at the University of Washington, although the staff was skeptical about PANDAS, did give her antibiotics immediately. The doctors said PANDAS is rare but agreed that Ava did fit the description. Ava had several of the symptoms that are listed for Pandas. After the doctor ordered blood work we were sent home. We felt so relieved and just thought Ava would get better.
However, Ava calmed down in some ways but in many ways issues continued to plague her. The antibiotics did not do enough to calm her symptoms over a two-month period. Our little girl seemed to be getting worse. Her separation anxiety inhibited all her independence. She was afraid to go upstairs alone and even to the bathroom alone. She could not go to kindergarten classes. We panicked. We had very little help here in Seattle.
After calling all over the country looking for help I contacted the PANDAS Network. I will never forget getting a call from PANDAS Network’s former Executive Director, JC Konecny, who answered our call for help. She was able to talk me down from feeling like an absolute wreck. We were so incredibly scared and desperate for help.
JC had seen Dr. Latimer, in Washington DC for her own little girl. Within a month we were in DC and Dr. Latimer confirmed it was PANDAS. Dr. Latimer was so wonderful with Ava and gave us so much comfort and hope. A week later we had Ava’s first IVIG. We flew home and waited to see how Ava would respond to her treatment. After about 5 to 6 weeks we saw Ava return. It was amazing how well IVIG worked for her.
Since her first IVIG we have chosen to repeat IVIG two more times within two and one half years.
We knew we needed to repeat her treatment as some of the symptoms started to creep back in including mild motor tics and mild OCD. Even with some symptoms coming back they were nothing like her onset. For the most part we have Ava back.
Now, we watch closely to make sure Ava is not experiencing symptoms. If OCD rears its ugly head again we will continue to treat her. Despite that difficult time, today, our daughter is a pretty typical eight year old; she attends school and participates in ballet and tap class with no issues. Also, she is well aware of what PANDAS is and actually can explain it better than I can!
Ava is happy and full of spunk! We never take a day with her for granted We have learned so much from our sweet girl. I think she may be stronger than we are. This has been a terrifying journey, a real living nightmare however there is hope and kids can and do heal from PANDAS. We are so grateful for the PANDAS Network. The information and resources that they provide has saved so many children and us parents too. If you are wondering if your child is suffering from PANDAS do not wait get to a specialist right away. Early treatment is so very important as a misdiagnosis can be devastating.
Thank you PANDAS Network, Diana Pohlman, JC Konecny and all the wonderful volunteers, doctors and scientists for supporting for working so hard for all of our kids!
Sincerely,
Angela~Ava's mom
