Excerpt from the blog, Hidden Illness: Our Story of Recovery from PANS/PANDAS/LYME.
STRENGTH HOPE LOVE
Over the years we got a lot of well-meaning, really bad advice. In the beginning, one organization told me it wasn't Sensory Processing Disorder if it didn’t last all day. Our pediatrician said the UTI symptoms of frequency, accidents, and obsessive wiping, might be due to constipation even though I assured them she was perfectly regular. The sudden separation anxiety was a phase. The emotional outbursts that I could not console were typical developmental behaviors. No one knew what to make of it so when the symptoms subsided after a few weeks, we simply moved on.
Melatonin didn’t help. Reward charts brought her crushing disappointment when she couldn’t achieve her goals; dangling a carrot just out of reach is cruel. A psychologist, who couldn't get my daughter to look at him never mind talk to him, decided it was purely behavioral. I was instructed to tell her that these outbursts were "simply not allowed". He told me to take away something of great importance every time she didn't comply. "She will learn" he said, and me, desperate to bring her some relief, tried it. Desperate times. It only took me a few days to come to my senses and realize she could not help herself, but the mama guilt from a few of those nights is raw in my heart when I remember.
This child didn't need to learn these things; she had already learned all of it. She had hit every one of her developmental milestones on time but had somehow lost these abilities that had once come so naturally to her. This child, tortured from the inside, could not simply comply; she was sick and no one knew. I had always parented with a gentle guiding hand, setting boundaries and letting natural consequences aid our children in making better choices. Now I found myself reaching for straws, tough love, rewards, strong consequences, and some ABA therapy techniques. Nothing helped.
When the dark of night quieted my mind, my heart silently screamed out, "HOW could this have happened? Why? What happened to my child?" There had been no major life changes, no trauma. Nothing to warrant such a change in my child. She had been fine. I could remember her being a sensitive but pretty typical child in the not so distant past. What could have gone wrong?
TRUSTING MY INSTINCTS
One of the most perplexing things about all of this was the way the symptoms would come and go. Months of relative calm, periods of moderate challenges including clothing sensory, maybe one other symptom thrown in to keep us on our toes, and then crisis, when everything hit hard and knocked us off our feet. The first time that I remember thinking something was really wrong was during the winter of her third year of life, when our daughter was beside herself for three weeks. All those symptoms raging. We were about to call out for help and then POOF! Gone. We were thankful and moved on. That summer it came again, harder this time. After a month or so, POOF! Gone. We crossed our fingers, held our breath, and began watching our daughter for any sign of a return. PANS parents in training. Always on guard, scanning the horizon for signs. In the coming year these flares came and went, lasting one to three weeks, and as quickly as symptoms hit they were gone. Until, that one time, when they settled in and there was no POOF to come.
August 2014, at age 5 years and 4 months, our daughter plummeted and did not rebound. It was four months later that we got an OT evaluation and were told our daughter had Sensory Processing Disorder (SPD). We were told how to help her and I began my research, but the OT sessions did nothing and something about SPD didn't quite fit. I didn't know what it was but I desperately felt that whatever was wrong was something that could be fixed. My fairly typical, albeit sensitive child, had become a child with special needs, unable to perform simple daily functions as she once had.
Desperate to learn and understand I reached out to my online support groups, night after night, shouting in to the darkness through the silent glow of my laptop, pleading for answers, for anything to help me see more clearly.
In response to these posts, one mom, in one group, said one word, that changed out lives. PANDAS. And there our journey began.
FINDING OUR WAY
Could this be it? Common infections and illnesses trigger inflammation resulting in auto-antibodies that trigger behaviors. Waxing and waning symptoms. Personality change. Many symptoms were lining up but some of our picture didn’t quite fit. I joined a few PANDAS/PANS groups to see if it was where we belonged. One night I shared our story and my doubts about how some of the diagnostic criteria was not characteristic of my daughter. I couldn't point to one big sudden "overnight" onset. We didn’t have any motor tics, cognitive regression, or persistent OCD (so I thought). Our biggest symptoms were clothing sensory, insomnia, emotional labilty, intermittent urinary issues, and anxiety.
Once again, one mom's response spurred me on. “My daughter was just like yours at age five, her biggest symptoms being sensory, but as years passed she got so much worse. Don't until she fits the full criteria. Get help now.” The fear set in to my heart and I upped my research.
In January, 2015, by the glow of my laptop, in the wee hours of the morning I got my answer. Exhausted, worried and needing to understand, I was watching yet another video of leading physician presenting at a conference of the "Northeast PANDAS/PANS Parents Association". Describing a good deal of my daughter's medical history, they explained the waxing and waning of symptoms along with one symptom I had not heard anyone else mention. She said something like this:
... around the ages 3 or 4 we see an entry for a visit to the pediatrician for UTI symptoms. … sense of urgency, frequency, feelings of wetness and obsessive wiping….UTI results are negative. No one knows what to think ….after a few weeks the symptoms just go away so everyone moves on... If you see this in the medical file you can bet it is PANDAS or PANS."
My heart skipped a beat, my breath caught in my chest, and I replayed the video. The wiping. Tears. Stinging tears that tore at my heartstrings and left me with a feeling of disbelief. Finally an answer. Someone who understood. We were not alone.
I started posting to get more feedback.
PUTTING THE PIECES TOGETHER
It took almost a year to get our first appointment with a well-respected PANDAS/PANS physician. In the months as I waited for our turn I scoured every page of her pediatric file and every support group post I had made over the prior two years. A picture began to emerge, and like a thick fog lifting to reveal a mighty edifice I could reach out and touch, her story was crystal clear.
Behavioral flares all linked with illnesses and vaccines.
The depth of grief that settles in your chest when you realize you have done things that hurt your child and caused immeasurable suffering, things that were avoidable…that grief is suffocatingly weighted inside, on top of, and all around your chest. Constricting. Heavy. When I go back, like now, and read our history, relive those early years, look at all those sick visits when she was a baby in daycare, I can hardly breathe.
It has been almost two years since our diagnosis. We are now treating lyme and co-infections and still seeing the ups than the downs but recently the ups got so high it looked and felt like 99% recovery! A peace I haven't felt in years settled in my heart and in my soul. But, PANS is PANS. Cunning, stealthy, cruel. A few months later a cold virus went through out house and symptoms once again began to emerge. I fought it back and won the battle but the war raged on. A few weeks later a stomach virus went through our hours and then another cold virus. And we all fall down.
This "down" hasn't been as severe as the others which is encouraging, but it has rocked my world and shook me out of denial. My daughter has PANS. Even when she is well, she has PANS. Even when she is happy, laughing, sleeping, dressing, she has PANS. It is there, hiding, lurking, waiting. We are in month two of this moderately severe flare and we are fighting like hell. The suffering is unbearable at times but we are one of the "lucky" ones because it could be so much worse. She is happy and goes to school and has friends and eats and is kind and loves. It could be SO much worse.
I don't know for how many more years she will react to illnesses in this PANS sort of way, but today I know she can and will have healing and I believe we are a solid path to recovery and health. We are hopeful that as we go we will continue to uncover clues that lead to more answers that bring more and steady healing. Our diagnosis has given us direction, a hill to climb, a goal to achieve, a battle to fight. A focus on healing and health is our guide.
LIVING WITH PANS
My eldest daughter might have received the official diagnosis and it is her body that is wracked with this illness, but our whole family lives with PANS. In some ways, it is OUR diagnosis. PANS has changed all of us and changed the landscape of who we are as a family. PANS has changed us for worse and for better. It has ripped us apart at the seams to the point that I wasn’t sure we could stitch ourselves back together – but we did. It has tested our resilience as we crashed to our knees over and over again with grief for the death of the living and the life we could have had – but we got back up. It has brought a darkness over our lives and defined the childhood of not only the diagnosed child but tragically, cruelly, and unfairly, her younger sibling as well – but we live and find joy.
We all suffer for PANS but PANS has brought its gifts. We are stronger, more understanding, more patient, more resilient, smarter and able to be a light to others starting out on this path. Our PANS has helped at least a few other children who might have suffered longer had it not been for our struggle. We are not PANS but PANS is a part of us. PANS may have weakened us but it also made us stronger. PANS may have crushed us but we have hope. PANS may have darkened our hearts but we have light and love.
BREATHE IT ALL IN
I often realize I am holding my breath, not only figuratively but literally. I remind myself to take a deep breath. Don’t hold this darkness out there, let it all in. Take in the grief, the sadness, let the anger and futility bubble up, and there in all of it is the love. Lean in to the darkness because it is in those moments that we gain strength and our weaknesses are put aside. Dig, and learn, and share, and cry, and scream, and fall apart, and get back up, and support each other, and try harder, because all of it is necessary. I will not sentence my daughter to live a life with symptoms of mental illness, knowing those symptoms are caused by a treatable medical condition.
Lean in and find the strength, the hope, and the love. It will see you through.
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