Finding Our Way

January 8, 2016

The Wrong Paths

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 her shoes "warmed up" as I said they did after ten minutes or so; true SPD would last all day long they claimed. Our pediatrician said the UTI symptoms might be due to constipation even though she was perfectly regular. They didn't know what to do so when the symptoms subsided after a few weeks each time we simply moved on. Try melatonin to get her to sleep they said but it only made her feel sick and too hot at bedtime and never helped at all with the multiple middle of the night wakings. Our pediatrician finally suggested counseling for anxiety and the psychologist who couldn't get her to look at him never mind talk, instructed me to tell her that these outbursts were SIMPLY NOT ALLOWED. He told us to take away something of importance every time she didn't comply.  "She will learn" he said, and me, desperate to bring her some relief, actually tried it for a bit. Desperate times. The mama guilt from a few of those nights is still raw in my heart.

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 or early, but had somehow lost these abilities that had once come so easily and 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 assist our children in making better choices.  Now I found myself trying tough love, rewards, strong consequences, and even attempted to use some ABA therapy techniques. Nothing helped. The only obvious medical issues we could see were acid reflux which we treated, and an eye condition which caused one eye to turn in, eventually requiring surgery. The rest of this behavioral stuff was thought to be psychological but it just didn't sit right with me. How could this have happened? And why? There had been nothing to warrant such a change; no trauma, no changes, no upsets. She had been fine. I could remember her being a sensitive but pretty typical child in the not so distant past and now I was parenting a full-blown special needs child. 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 2012 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 and we wondered why. 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. In the coming year these flares came and went, lasting one to three weeks, and as quickly as symptoms hit they were gone.  Until.

August 2014, at age 5 years and 4 months, our daughter plummeted and did not rebound. It was then that we got an OT evaluation and were told our daughter had Sensory Processing Disorder. 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 full-blown special needs person unable to function as she once had.

In desperation, night after night, I reached out to my Sensory Processing Disorder support groups:

• I sometimes feel devastated about the turn [my daughter] has taken over the last four months. I keep waiting for her to snap out of it like she has every other time but she isn't. 

• Things are worse than they have ever been and I don't know how or why...  I feel like I have been thrust in to a nightmare.
• Has anyone found themselves SUDDENLY thrown in to this diagnosis because symptoms got serious very quickly? Probably over the period of 3 months. I keep thinking, where has my child gone?
• My god I never saw this coming. I don't understand what happened.
• Do any of your kids seem to go in to "remission" out of nowhere?  This Saturday, she gets up, gets dressed, BY HERSELF, no spinning required, no help from me, and I didn't even have to be in the room. She put on TIGHTS and a dress! Unheard of!

• She is in another almost total remission. I feel so HAPPY. 

• Sitting with [her]for an hour now at 2AM. Sigh. Her symptoms were all gone for weeks but have crept back in. 

• Sitting by her bed since 2am. Now 4:30. Guess I have to start lying down with her so I can get some sleep next time. Poor sweet pea. 

• This PANDAS PANS syndrome is mind blowing. I wish I had called a specialist two months ago when I learned abut it. 

FINDING OUR WAY

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PANDAS:  Pediatric Autoimmune Neuropsychiatric Disorder Associate with Streptococcal Bacteria

PANS: Pediatric Acute Neuropsychiatric Syndrome

"New and evolving research has begun to substantiate that this syndrome involves a misdirected autoimmune process that affects or weakens the blood brain barrier. The region of the brain primarily affected is the basal ganglia. These group of structures that act as "switching stations" in the deepest inner region of the brain. Some of the brain function area managed by the basal ganglia include: movement, cognitive perception, habit, executive "logic based" thinking, emotions and the endocrine system."

SYMPTOMS

Anxiety

Emotional lability and/or depression

Irritability, aggression and / or severely oppositional behaviors

Behavioral (and/or developmental) regression

Deterioration in school performance

Sensory or motor abnormalities

Somatic signs including sleep disturbances

Exacerbations relapse and remit. They tend to increase in duration and intensity with each episode. Untreated PANS (PANDAS) can cause permanent debilitation and in some cases can become encephalitic in nature. Subsequent episodes can be caused by other environmental and infections triggers different form the original infection. Treated in a timely fashion - PANS (PANDAS) can remit entirely.

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Breath. Soak it all in. Could this be it? The big moment came by the glow of my laptop in the wee hours of the morning in January 2015. Exhausted, worried and needing to understand more I was watching yet another YouTube video of leading physicians 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 ever heard anyone else mention.

I am paraphrasing here but the physician said something like this, "The full review of each child's pediatric medical record is our first step of assessment. Somewhere around the ages 3 or 4 we see an entry for a visit to the pediatrician for UTI symptoms. The child has a sense of urgency, frequency, feelings of wetness and obsessive wiping. A urinalysis is ordered but the results are negative for a UTI. No one knows what to think and after a few weeks the symptoms just go away so everyone moves on.  One doctor even wrote something like "Frequent Urination Syndrome" which isn't even a real thing. 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. 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.

Strength. Hope. Love.