PANS/PANDAS: Up Close, Raw & Real

by Rachel Love Cohen

Warning: raw and real. Don’t go here if you need sunshine and roses.

It has gotten so bad. He is fed up with the supplements, remedies, medicines, and diets. The new homeopathy isn't helping. The alternative medicine isn't working. The pediatrician doesn't think it's her job to help. We have already spent three years working with the functional medicine doctor, so clearly that hasn't worked. The THREE immunologists don't know why, and the TWO gastroenterologists don't know why. The neurologist says it's autism and OCD and that's just the way he is.

But it ISN'T JUST THE WAY HE IS!!!!

Because I've spent months at a time with my real child. He's sweet and gentle and loving and thoughtful and deep and intelligent. He doesn't kick me and poke me mercilessly; he doesn't swear at me or tell me he hates me, or that I'm a bad mommy; he doesn't look at me with a satanic, demonic glare and get told by the big boys on the playground that he acts like a criminal and he should have tattoos inked all over his face. He doesn't compulsively wash his hands 15 times a day or ask me to touch everything that he touches. He doesn't obsess over thinking about the swear words he knows, or point out every word that people say that rhymes with a swear word. He doesn't physically and verbally attack his sisters and dad, or find fault and RAGE over every. single. thing. that happens every. single. second. No. Not so long ago, he enjoyed being alive.

Autistic children don't have months of being completely unaffected / neurotypical, and then regress overnight into autism, and then become neurotypical again - over and over on repeat. 

Kids with #PANS and #PANDAS do. 

But during this most recent flare, I've been told by multiple practitioners (in both the conventional and the alternative healing world!) that PANS isn't real. I've been told by his teacher to get him into therapy and work on behavior and to accept that this is who he is. I've had my mother-in-law, who hasn't engaged with us about our children's health, ever, write us a letter and tell us we are too difficult to have in her life, and she can't see us anymore.

But we're used to that. I don't have enough fingers and toes to count the family members who've turned their backs to our suffering. These are the ways a PANS caregiver is gaslighted. These are the actions of others that, when added to an already monumental load of fear and shame and guilt and hopelessness, make me wish - for a few fleeting moments - that I could end my own life. 

Because how can a mother live in a world where her own child's illness is not only invisible, but is medically delegitimized, socially degraded, culturally invalidated, and straight-out ignored by most of the humans she knows? And how can a mother go through this not just with one child, but with three? 

For 12.5 years, I've lived in a vacuum.

A space from which air has been completely removed.

A hole left by the loss of human beings able to relate to my reality.

A void that seems only to grow darker and emptier as more family members and friends choose to drop us and as more experts and authorities discredit our lived experience.

If you've read these words and you're not able or willing to handle the message, please PLEASE do me the favor of unfriending yourself. This is my #truth and I'm not sorry you're offended.

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A special thank you to Rachel Love Cohen for permitting us to reprint her words. She speaks for many of us and her son belongs to us all.