Many of you have kindly asked how our oldest son, Jack, and our family are doing. So, I want to give an update. For our new friends in the WML community, Jack is our amazing eight-year-old boy. He has a passion for Star Wars, loves to read, and is an all-around love bug with a huge heart. He inspired the creation of this blog, the founding of the Wonderfully Made Living Facebook community, and my work as a consultant for special needs parents and teachers. He’s a pretty inspiring little guy!
Jack was diagnosed with autism when he was 3.5 years old. About a year ago, he was diagnosed with PANDAS/PANS, in addition to autism.
“PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response that results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.” Learn more here: PANDAS/PANS Network
Anytime Jack gets sick with anything from the common cold to pneumonia he has a PANDAS/PANS flare up. As you can imagine, this is quite often in an elementary age little boy. When illness, and therefore these flare ups happen, Jack is overwhelmed by OCD, anxiety attacks, and, of course, the illness his body is fighting on top of the PANDAS/PANS. It can take weeks for him to recover from something as simple as the common cold.
Over the course of the past month all three of our children have been battling strep, stomach viruses, hand foot & mouth, and colds. Jeff and I have had the flu for several days. And we are doing our best to work and care for the kids and ourselves. In the midst this, Jack developed a PANDAS/PANS flare up about a month ago and has been progressively worsening each week.
So far, the treatment plan that was successful in the past is no longer working and we have to try a new treatment plan. But we don’t know what that new treatment plan is yet. We visited his neurologist today who believes, as we do, that this latest attack was brought on by a stomach virus, which seems to be the biggest trigger for Jack. We have follow up appointments scheduled with GI and a PANDAS/PANS specialist in the next two weeks, and hope both will give us some new action steps to take.
In the meantime, Jack is home from school and we are doing our best to balance his needs with his siblings’ and everything else that comes with being working parents, new homeowners, and…well, people.
A few closing thoughts
Several of you have asked why I haven’t shared about him more openly in the past few months and I want to speak to that. My main answer is that I want to be respectful of him. Jack is a person who happens to have autism spectrum disorder and a pediatric neuropsychiatric syndrome. PANDAS/PANS is a part of him, not all of him. But many of the behaviors that present when PANDAS/PANS is triggered are upsetting, and out of the deepest respect for Jack, I will continue to keep his personhood at the heart of what I share.
I also want to do my best to write from a place of healing and with a sense of knowing that there is a higher purpose to what we are going through, rather than a place of fear, worry, or anger. For much of the past year, though, I’ve felt afraid, worried, and angry. I’ve had weeks when all I could do was focus on the moment in front of me. And then the next moment and the next.
With all of that said, I also want others to understand this journey is ongoing. It’s hard, wearing, and heartbreaking. And we’re still putting one foot in front of the other, searching for answers and supports for our son, every day. Sometimes it feels like we’re still battling the same PANDAS/PANS attack from a year ago, even though there have been spurts of health and calm in between, because there have been so many flare ups it can be hard to tell when one ends and another begins.
Finally, we have two more children who have hearts and hurts that we must always have at the front of our minds, as well. They are people, too. They have wants, needs, and desires that we must balance. Jeff and I want each of our children to know every day that they are wholly and equally loved. This requires time, intentionality, and a whole lot of grace.
So, friends, that’s where we are today. We’re messy. Imperfect. Sometimes distant when we don’t mean to be. And doing all we can to pour our hearts into one another.