Before diagnosis, Ke'Ala and our family saw many doctors and was given many possible diagnosis before a doctor finally correctly diagnosed and successfully treated her. I will not go into every detail of every mistake made along the way due to the lack of education and awareness of the doctors. But below is a quick listing of what we went through before her recovery.
One lab visit in week seven of her hospitalization, requested by unconvinced parents and a pediatrician that had tested and treated PANDAS before. The rest is our journey out of the special kind of hell that too many families of children that have been misdiagnosed with mental illness are suffering.
Ke’Ala’s PANDAS Story
Last winter, our daughter, Ke’ala, at eleven years old, became very ill, quite suddenly with psychiatric symptoms that went misdiagnosed and heavily medicated to the point of catatonia and suicide. Now, as we relive that ungodly winter, with all of the anniversaries, we are horrified by what she endured at the hands of people that we entrusted to help her.
It is imperative that the medical community be educated about PANDAS/PANS so that when a child presents with psychiatric symptoms, they FIRST rule out infection-based causes. We have a moral obligation to all children that we ensure this happens so that no child needlessly endures a world of pain and fear so deep, and the sense of helplessness and terror that our daughter did.
It came out of nowhere, a childhood dislike of other children, particularly her brother, vomiting, became an incapacitating obsession that closed in on Ke’ala and our family. Over the course of a week to ten days, she went from being a normal kid to not being willing to ride in the car, go to school, leave our house, then leave her room. Gradually, she became wary of anyone other than me, and wouldn’t let me leave her side. She started seeing a psychiatrist that prescribed Celexa and Ativan, which made her suicidal. Next they tried Prozac and Abilify. Inderal was added. Her mood continued to deteriorate and her anxiety elevated. She also started showing OCD behaviors around things such as toilet flushing. After five weeks of missed school, she was hospitalized. There too she was suicidal, and her condition continued to deteriorate. “She’s a tough one to diagnose”. “She’s complex”, and “She sure is a hard one to figure out”. Followed up by, “We just have to give the medication time to take effect”. We heard it all, as we watched our daughter slip further and further away. One day, she put a bag over her head. Most days, she just passed in a catatonic state, unlike that bubbly, talkative, happy, loving child that she had been all of her life. The doctors were looking for a missing piece. I found it. Through a network of people that had heard Ke’ala’s story, I was made aware of PANDAS and asked her pediatrician to test her for it. Sure enough, her results came back consistent with PANDAS, and he referred us immediately to an Infectious Disease Doctor at Mass General. Within two weeks she was released from the hospital and her response to the antibiotics allowed her to return to school and finish her 5th grade year with her friends. Only once we had her off of all psychotropic drugs did we see 100% of our child again, and did we realize fully just how adversely those drugs had affected her and her recovery.
We are blessed. We are also fortunate that she recovered on antibiotics alone. We hope that she stays healthy, but know that if the time comes when she needs IVIG, we would not be able to afford it as an out of pocket expense.
Today, she's a freshman in high school; high honors; swimming on the varsity swim team; plays field hockey; etc, etc. She's off her IEP that she went on the following year. I'm not going to say that PANDAS is a distant memory now, but...its ALMOST a distant memory now. In the words of a fellow New Englander: How do you like THEM apples?
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