PART 2 - JOURNEY TO DIAGNOSIS (NOT ALL ROADS LEAD TO BOSTON)
Part 1 -
“I felt relieved to have found an answer. But my relief was short lived as our pediatrician was skeptical of the diagnosis and we started to have recurrent ER visits. We were getting nowhere fast.”
Part 2 of a series
After two emergency room visits to Cape Cod Hospital, continued worsening symptoms, and no answers I took Miles back to the pediatrician for a third visit. I walked in armed with printed scientific studies to support my concerns for PANDAS. At this visit we had to see a different doctor who was less familiar with Miles’ case. He was agreeable to drawing some labs and I begged him to call Massachusetts General Hospital (MGH) to speak with the PANDAS expert there. I had already requested an appointment with the MGH PANDAS clinic, but there was an eleven month wait and our appointment wasn’t until November. It was Friday February 21st. We left the pediatrician’s office with no answers and pending lab work.
The next day, Saturday, February 22nd Miles’ rage, physical aggression, and bizarre behaviors had peaked to an all time high. I told Ty that the second I saw an opportunity I was putting him in the car and driving him to Boston Children’s Hospital. And that’s exactly what I did. Upon arrival at the ER I reported all of Miles’ signs and symptoms to the triage nurse. She looked me straight in the eye and said, “Do you think this is PANDAS?” Tears immediately fell from my eyes as I nodded yes. I distinctly remember texting Ty afterwards to tell him about the triage nurse’s question.
I was hopeful that we were going to be able to get some help but unfortunately this statement could not be farther from the truth.
Miles went on to have subsequent experiences at Boston Children’s Hospital - there were three more ER visits and a total of 4 psychiatric hospitalizations. He essentially spent the entire spring in the hospital and we still had no clear diagnosis or path forward. What we did acquire was a laundry list of possible diagnoses - there were probably about twelve of them - ranging from ADHD to autism to unspecified impulse control and conduct disorder. Some of my favorites which were of course not real diagnoses actually documented; but mere responses by attending physicians who answered my questions saying “Sometimes this just happens to boys” or “It could be hormonal since he's 9” or “Your child just has a behavioral problem.”
The cumulative time in the hospital was a shoddy bandaid compressing a hemorrhaging wound. It provided respite for Ty and I and I do recall in my exasperated state during a meeting telling one of the social workers and attending psychiatrists that Miles’ hospitalization felt like an “expensive babysitter.” I wasn't proud of my curt statement as I let my frustration overtake the situation and I found myself at a loss for other words.
What we learned during all that time in the hospital was that we were on a hamster wheel. No one in any position of power inside the four walls of the hospital was supportive of the PANDAS diagnosis. One of the residents who was empathetic to our situation said privately to me, “Emily they don’t believe in the diagnosis here. I have a daughter and if this was my child I would take her somewhere else.”
After Miles’ first admission he was discharged home a few weeks later. We expressed our concern that we did not feel safe about it and the response given to us was to “make sure you lock up your knives at home.” During our final meeting before we left, the attending psychiatrist told us “he just has a behavioral problem.” We brought Miles home with no medications and no plan except for virtual counseling (virtual because ya know … COVID). We were home for four hours and all hell broke loose. We had to call the police for help and the next morning, eighteen hours after discharge, I drove him back to Boston. We chose to go back to Children’s because at this point MGH was teeming with COVID patients and I thought because his case was already known at Children’s that perhaps we could make some headway with them. Again, I was wrong.
Boston Children’s Hospital is absolutely a place where many children’s lives have been saved and where many families have been helped. I witnessed this first hand when I did my clinical rotations there during nursing school and then later as I worked as an organ donation coordinator. However, I will state that just because a hospital has world wide recognition does not mean that each department does not have flaws. I do believe that Boston Children’s Hospital has much work to do when it comes to treating children who have the signs and symptoms of PANS and PANDAS. And I know I am not alone in this statement.
During Miles’ hospitalizations I continued to communicate with our pediatrician. I asked him where he stood on the diagnosis of PANDAS. He said, “Honestly Emily I am skeptical about it. I do think it exists but I think it’s rare and misdiagnosed.” When I went on to ask him what else he could do to help us or what else he thought was going on he had no answers. It was then that I knew we had to get in front of someone who was willing to try to help us.
The PANS and PANDAS community is a tight knit group. Mainly because of the devastating effect the disorder has upon the entire family and the past controversy around the diagnosis. The diagnosis of PANDAS has only been around since 1998 and later in 2010 the diagnosis of PANS was brought forward. So it’s fairly new when you compare it to other diseases. Since the community is so close there is a lot of information sharing that goes on. And as you can imagine during this day in age most of this information is shared through social media. This was how I found our answer towards diagnosis.
It was through a Facebook group search that I found our current pediatrician. He is a general pediatrician who was willing years ago to try to help kids like Miles. He started attending every PANS and PANDAS conference and networked with the best of the best out of Stanford which is where the original PANDAS expert, Dr. Susan Swedo, is located. I will never forget the first phone call I received from him. It was 9 pm and we spoke for about an hour. I recall the fear when he said, “Emily, typically I don’t see kids as sick as Miles. HIs case is severe but I’m willing to try to help. I might not be able to help but I’m willing to be your quarterback.”
The relief that washed over me in that moment was incredible. Finally, after months of speaking with so many providers, after countless hours of research, and endless sleepless nights we had found someone willing to listen and help. It was Friday May 15th when Miles came home from the hospital for good and he took his first dose of antibiotics and Aleve. Our pediatrician told us, “Give it two months. We will know in two months if he is responsive to this treatment plan.” Ty and I looked at each other. We could do it. We had already been through such hell and we knew we could keep going.
Part 3 - Dead Ends With Traditional Treatment