Last Updated on October 9, 2022 by admin
PANS (Pediatric Acute Neuropsychiatric Syndrome) / PANDAS (Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Strep) is a post infectious autoimmune encephalopathy. It’s a misdirected immune response that targets the basil ganglia in the brain and causes inflammation. Symptoms can include Debilitating OCD, Oppositional Defiance, Food Restrictions/Anorexia, Anxiety, Severe Separation Anxiety, Tics, Urinary Issues, Sensory Disorder, School Avoidance, Dyscalculia, Rage, Tremors, Sleep Disturbances, and more. Severe cases can lead to hallucinations and self-harm.
Our PANS story began just after my daughter’s fifth birthday. She simmered with milder symptoms for most of her life until then. We knew something was wrong… sometimes… and then other times, we questioned ourselves and what we thought we had seen. She was adorable and quirky and strong-willed, but our gut told us there was more to the night terrors, the explosive tantrums over inexplicable things, and the chronic gastrointestinal issues.
We had visited with a litany of specialists: ophthalmologist, gastroenterologist, allergist, and chiropractor, as we tried to put our finger on the problem. We were told by her GI to keep her on long-term, high doses of Miralax for her chronic constipation. We were told by the eye dr. to keep her coming back to check on the exotropia (out-turned eye) that was worse at times starting at two years old. And finally, we were told by the allergist that we were recognizing inflammation in our daughter when her behavior got fuzzy, her speech became nonsensical, and her eyes became unfocused.
I didn’t know about reassurance- seeking and unusual rituals
Upon starting PreK, our daughter had a large round of va***. This was, no doubt in our minds, the environmental trigger that set gasoline to a simmering fire. I can trace significant OCD and separation anxiety to this event; although, I wasn’t trained at the time on how to recognize OCD and all the ways it can manifest. I didn’t know about reassurance- seeking, hard- to-recognize contamination fears, and unusual rituals. I wasn’t sure why she kept going to the bathroom in secret to wipe and why she was constantly changing pants. I didn’t connect the dots about her sensory issues that had been long-brewing. No doubt, I thought it was odd that she fixated on past events and recounted them endlessly until I contacted the teacher about a particular situation or child, only to learn that that child had moved away 8 months ago or that the situation was long-since dealt with. But I didn’t know that was OCD. I thought she was just really sensitive.
That first year of pre-k was a hard year. Blood curdling night terrors began to happen fairly often and the rituals amped up, but we thought she was having anxiety about starting school and the dietary restrictions that her allergist had implemented.
Our daughter would get this annual cough. It started her first year of daycare when she was two. (She had never been sick a day in her life until then, and after, it seemed we could never get her well). The cough would last for months. It would keep her up at night. She was prescribed a Z-pack for walking pneumonia (mycoplasma). I noticed her hands were tremoring all the time, but the pediatrician said it was most likely from the strong antibiotic. She was complaining of leg pain a lot. Then, all of the sudden, she was having urinary issues. She kept having accidents, night and day. (This is a child who potty-trained herself at night at barely three years old). She would freak out at school and say that she’d had an accident. The teachers would tell us, confused, that she really hadn’t. There were times when they couldn’t get her out of the bathroom. Her UTI tests were negative.
Our daughter started holding on to me when I tried to drop her off at school in the mornings—sometimes chasing me out the door, clinging to me and crying. She was dazed and confused as I tried to pry her off my leg and send her, crying, back to the gym with the other kids so I could get to work without being late again.
We sent her back to GI, and they x-rayed her stomach and convinced us that her urinary issues were due to extreme constipation. They prescribed a 15-cap cleanout with Miralax and sent us home. Within three days, our daughter was unrecognizable and mostly debilitated. This is the “acute onset” that PANS parents talk about. It seemed like acute-onset because it became so intense. I remember the day I knew something horrible was happening to her brain! In the past, I had suspicions of something “happening,” but now, we were past suspicions. We were in crisis! She tested positive for strep immediately following the mycoplasma pneumonia, following the v***s (all known PANS triggers). She was finally diagnosed with PANS.
-No one willing to run even the most basic tests
That was just the beginning of this difficult journey. For the sake of her privacy, I will spare the details of the suffering that followed for the next several years. From that moment on, we were sent to more “specialists” who still had no clue how to help our daughter. At best, they waste our time and money and drag out the trauma for her and us—shuffling us from one to the next: occupational therapy, psychology, neurology, immunology, rheumatology—each time requiring us to open the wound, bare our souls, and be sent home empty handed and misunderstood. At worst, their ignorance of this complicated disorder threatens her safety as we were pressured about standard v***s, prompted to do an immune-v****-challenge, and often disregarded when traditional illnesses don’t present with traditional symptoms.
See, PANS is a “misdirected immune response,” so nothing is “typical.”
When she had pertussis, she never coughed once or ran a fever, but instead suffered hypoxia repeatedly and had to be rushed to the hospital on the ambulance twice–no one willing to run even the most basic tests because she lacked obvious symptoms– Not even a finger prick to look for infection. But she continued to have dangerous oxygen dips all through the nights while she slept, and she had to be constantly monitored with our store-bought oximeter. We couldn’t even get someone to call in an overnight oxygen monitoring for her.
So we stayed awake.
We asked family to stay awake when we couldn’t.
It shouldn’t have to be that way.
Had I not been educated, privileged and resourceful enough to find the information, support groups, research, and protocols to present to the doctors over the years, the horrifying effects of PANS would have been even more devastating, as they have been for countless other families.
This is why my heart is in advocacy and awareness!
We defend the health of our kids like their lives depend on it!
After years of searching, we finally receive life-changing help through functional doctors whom we travel to see and pay out of pocket for. We now have not just one child, but two, with immune deficiencies, tick-borne and other under-lying infections, which are constant triggers. We pay thousands upon thousands for informed care and sophisticated, highly-sensitive testing, and we do all of our own research and education. We are frequenters of PubMed, the PANDAS Network, and Latitudes. We listen to lectures from the few PANS specialists in the country, we argue with uninformed doctors about the appropriate care for PANS children, and we defend the health of our kids like their lives depend on it!
Because they do.
One of the most difficult parts of this journey is the feeling of being completely alone—the reality that we are charged with being our children’s doctors, research analysts, dietitians, and educational advocates outside of our professional expertise. There is great trauma in the fear that our children will experience more harm by well-meaning doctors who have not received proper training in the recognition and treatment of this disease.
We are always on defense.
We are always on offense.
We fear for our financial future as it is chronically hard to work full time and juggle flares and doctor appointments, all the while, paying high out of pocket expenses for two children. We worry about those children who are not receiving care because their parents lack the education, resources, and funds for their treatment.
I believe God set our family on this journey because he knew we would speak for those who couldn’t, and I have made that my mission in life! Many PANS children are in crisis or will be at some crucial point, and their mental and physical well-being depend on insurance coverage, doctor education, and parental awareness!
There is treatment for PANS! Prophylactic antibiotics, swift remediation of illness, gut healing, IVIG and Plasmapheresis have all shown to be effective treatments that can give a child his or her life back.
Please share these stories far and wide and lift your voice in awareness and advocacy. It may just save a child’s life!
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