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Lily’s PANDAS Story

October 11, 2017 by in Uncategorized

Lily before treatment and after

Our daughter, Lily woke up one morning in January with what we thought was a typical stomach bug. But something was different. Our girl was different. Something happened. It was anything but typical. Little did we know, our life was about to spin out of control.

Fast forward a few months, through all of the gory details including frequent visits to the pediatrician, therapists, GI specialists, neurologists and countless procedures, including blood work, lab tests, neuro exams, colonoscopy and endoscopy…and her diagnosis was confirmed. On my 18th wedding anniversary, I sat in the doctor’s office looking at my sweet daughter on the exam table, when he confirmed what I had feared for a few weeks. That day, she was diagnosed with PANDAS.

My mind started to spin. I started googling and researching and panicking. I was desperate to find answers. And I had no idea where to start. PRAI was, and still is, a huge support for me and my girl in this crazy, complicated journey.

My sweet Lily Kate, plagued by OCD tendencies, random sensory issues, constant stomach pain, irrational fears and phobias, intense anxiety and rage and an intense need to be with me. It broke my heart.

And that’s when I found PRAI. PRAI was, and still is, a huge support for our family as we navigate through this crazy, complicated journey. Lily began long-term antibiotics and made steps towards recovery. She had her tonsils and adenoids removed in August and has had little to no PANDAS symptoms since.

We are so grateful for the support of the PRAI community during what was a very dark time in our lives…all of our lives. PANDAS is traumatizing for the entire family and we all continue to heal in our own time. We pray that our precious Lily continues to heal and we pray for all of these precious kids suffering from this life-altering disease.

~Dana Day Hennesey

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