Wednesday, May 16, 2018
It happened again. My child's mind was taken hostage for a week without warning. She caught a cold and lost her right mind. Seven days and seven nights. All the symptoms of a serious mental illness. If you know my daughter you would have been shocked to peek through the window to our world that week. You would not have believed your eyes. If you don't know my daughter, you would have assumed she was a child living life with severe anxiety and Obsessive Compulsive Disorder. If you loved my daughter, your heart would have been torn to shreds.
As a family, we are shredded but holding on to strings. Hoping to mend our hearts quickly before they are torn again. Hoping for a reprieve in between the hard stuff, to catch our breath, breath deeply, rest, and live life in the normal for just a little while.
Stealth Enemy
After a persistent flare settled in from November to February, my daughter had been doing better but bumping along with some low level worry and mild sensory symptoms as her immune system fought off the onslaught of seasonal allergens. I kept a close eye, increased antihistamines, and waited for the allergies and symptoms to subside. BUMP...Bump...bump....little bump...progress. Not too bad.
One week before Mother's Day, the floor dropped out from underneath us like that amusement park ride that leaves your stomach two stories above your heart. She had caught a cold a few days prior which included a lot of congestion and a cold sore. Within days her mild symptoms exploded in to debilitating compulsions that turned her world and ours, upside down. Suddenly wracked with the need to repeatedly wash her "sticky hands" that were not. Compelled to smooth her bed sheets to perfection, removing every wrinkle and aligning them so they lay only 1 foot from the bottom of her bed, no more. Forced by an enemy from within to get out of bed, multiple times, and fix every little thing in her room, through tears she cried out of pure exhaustion.
A PANS Story, Author OCD
It's story time my little dear, just lie down, I'll dry your tears.
UP! Up! up! Straighten up those books!
That's much better now, just don't look.
Lie down love and snuggle in, you've done well...
but I'll still win.
Once upon a time. GET UP! That one's not right, it must be tight!
Get in bed that should be it, I might let you rest a bit.
One, two, three, you can't catch me, I'll make you climb the coconut tree!
UP and up and down again, align the figurines by ten.
Now lie back down, it's all just right,
no, no, no, not tonight!
UP! to hide the messy shelves,
down, up, down, won't fix themselves!
Clear the desk, the toys, the shoes!
Okay, I suppose that's enough for you.
We've done so much together today,
Goodnight my friend,
tomorrow we'll play.
by: OCD
A perfectly happy and typical child is thrown in to the hell of medically induced mental illness, literally overnight. When this happens an experienced PANS mom instantly becomes "warrior" armed for battle and with ninja-like skills, begins administering treatment protocols. The last invasive most natural options are selected first because sometimes a few supplements help to balance the system and settled the flare. Precision focus on every nuance of behavior informs decisions and adjustments to the treatment plan are made. Help has to come quickly because every day, even every hour counts. A new symptom may appear at any moment; a symptom that those "other" PANS kids have but not us. (I wonder if other moms do that thing, that "them not us" thing. Comparing their child's symptoms to others in the groups, in order to reassure themselves that things really aren't that bad....at least not yet.)
The Power of Yet
On the positive side of yet we have hope that our day will come. "She isn't better, yet." "She can't get dressed without extreme sensory trauma, yet." "She can't get a cold without losing her mind, yet." On the terrifying side of "yet", it's icy cold hands grab your heart, striking fear that one day your time will come. "She doesn't have motor tics, yet." "She isn't refusing to go to school, yet." "No one outside of our home sees her illness, yet." "She isn't refusing to eat and needing a feeding tube, yet."
As always, life is a matter of perspective. You learn to live with the yet. The hope and the fear. The dream and the reality. Ying and yang. Dark and light. Day and night. Not yet.
This time, the treatment protocols that had worked in the past, failed us. On day five I started to consider the antibiotic but held off. On day six I had run out of treatment options and was more terrified of what I was seeing than I had been in 2.5 years. One dose of antibiotics the night before Mother's Day didn't help with the next morning's routine. I can see it in the pictures. A mother, smiling in the bright sunlight, a daughter in each arm. One light. One dark. Not just in clothing but in expression and coloring and health. Second dose that morning and we wait. A lovely day with my mother and the trepidation of the bedtime routine begins as we drive home.
Story time brought the greatest Mother's Day gift of them all, a child's sanity restored. "Mommy! The OCD is telling me to get up and fix that book and I don't have to do it!" My breath flows effortlessly for the first time in seven nights. Oxygen. "Once upon a time..." "Mommy! It's telling me to fix that toy too but I don't have to! eeeeee!"
Beaming, happy, quiet mind. Lying with sheets askew, toys misaligned, and messy shelves a showin', my baby lay down her head and fell peacefully to sleep. I took a picture and it is not my imagination that you can see the difference that 24 hours had made. Two doses of azithromycin either worked by striking whatever infection was there, or more likely, worked to reduced TNF alfa and brought my daughter back to her self.
Lemons and Lemonade
PANS is cruel. It shows up when least expected, rarely calls ahead, and doesn't leave even when you kick and scream. After years of struggling, we can't decide which is worse; the symptoms themselves or the not knowing. Not knowing when another flare will hit. Not knowing how bad it will get. Not knowing what flare treatment to try first. Not knowing if any of the treatments will work. Not knowing if this might be the one. The one that plunges her in to the deep dark nightmare of PANS that so many children can not seem to awaken from despite the best of the best medical care.
For now we are grateful. In addition to the nightmare, PANS has also brought life lessons. Lessons in letting go and living each day to it's fullest. Enjoying the good days. Not holding back our joy, despite the reality that the other shoe will surely drop...and it's a big shoe. The bad days give us plenty of time to suffer so we've decided we won't go there until they are upon us. I'm not sure it's the PANS that has taught me this, as much as it my daughter has. Her memory is short for pain and suffering. She lives in the moment like no one I've ever seen can.
Answers
As I continue to search for clues as to what lies beneath the instability of her immune system, my hope is that one day we will put PANS behind us. I dig my nails in to the hope of forgetting, the hope of moving on, even as I know full well that PANS will always be with us. As it silently slips in and out of the recesses of our memory long after the illness itself is gone, the scars of PANS will remain on our hearts and in our souls forever. One can't live through a hell like this and not be changed. The sorrow and weight of that reality can be suffocating to a mother who only wanted to give her children the very best start in life, the most happiest of childhoods, and the most loveliest of memories.
Still, there can be joy, there can be strength, there can be hope, there can be love. We haven't healed her...yet.
Strength. Hope. Love. PANS.
Wishes
Thursday, May 2, 2018
The moments that catch your heart off guard. "The Wishing Wall" in my daughter's classroom. We were flitting from place to place during Open House tonight, seeing her classroom and all of her work. A happy, carefree evening until this hit me like a punch in the gut. School has been the place she goes to forget. To be "normal". She fits in. We're lucky for that. This year has been different though. She's told a few friends about PANS. She chose it as the topic when she had to write a book earlier this year. And now, it's the first thing on her wish list. It's showing. It's on her mind.
Strangely, for me, seeing this on that wall with all the other 9yo wishes made it more real to me. Even after all these years it's still sinking in.
Strength. Love. Hope.
The moments that catch your heart off guard. "The Wishing Wall" in my daughter's classroom. We were flitting from place to place during Open House tonight, seeing her classroom and all of her work. A happy, carefree evening until this hit me like a punch in the gut. School has been the place she goes to forget. To be "normal". She fits in. We're lucky for that. This year has been different though. She's told a few friends about PANS. She chose it as the topic when she had to write a book earlier this year. And now, it's the first thing on her wish list. It's showing. It's on her mind.
Strangely, for me, seeing this on that wall with all the other 9yo wishes made it more real to me. Even after all these years it's still sinking in.
Strength. Love. Hope.
Springtime Flowers
Thursday, May 3, 2018
If showers bring flowers we should be overrun with blooms. We have not had a full-on flare since my last post but we've had ups and downs. A night or two of traumatic bedtimes, an afternoon or six of high agitation and angry outbursts that keep coming. This week, four days/nights of "just right" OCD when nothing feels right to her, no matter how hard she tries, yet she is forced to try and try again, through tears and frustration and helplessness.
I wonder still, why I don't see it coming until it us on us. It's like watching an elephant walk slowly up our quiet little street but not consciously registering it until it is marching in to our house. Some flares knock me down before I realize they have pushed their way in. On Monday, when she had to fix the covers on her bed umpteen times because they weren't right, I could have done something. Tuesday morning, when she had a harder time than usual putting on her socks, I could have done something then. Tuesday night, her dad got so frustrated he left her room during their bedtime routine because there can be no routine when OCD comes to play. I could have started to push and pull with all my might to get it out right then.
Finally Wednesday, I noticed the huge elephant in our house. I started some flare treatments yesterday and last night was a little better. This morning, a little help picking out the right shorts was all she needed. As we waited for the bus I watched her and her sister, riding bikes, sun gently shining, birds chirping, and I allowed the gratitude to settle in my heart. I used to guard myself against it, because I couldn't stand the fall, but not anymore. After years of dealing with the ups and downs you learn to allow the good to wash over you with gentle acceptance because you know that you will handle the next fall, no matter how bad, no matter how long.
This is how we live here in New England. April showers bring May flowers. We brace against the stormy spring and bask in the sun when it peeks through. We know it might snow but we also know the most beautiful sunny days. There is light, warmth, beauty, and the fact that there will be dark, cold, ugly, does not steal that joy from us anymore. We will not let it. We live with all of it simply because it is. This is life. This is spring. This is PANS.
Strength. Hope. Love. Always.
If showers bring flowers we should be overrun with blooms. We have not had a full-on flare since my last post but we've had ups and downs. A night or two of traumatic bedtimes, an afternoon or six of high agitation and angry outbursts that keep coming. This week, four days/nights of "just right" OCD when nothing feels right to her, no matter how hard she tries, yet she is forced to try and try again, through tears and frustration and helplessness.
I wonder still, why I don't see it coming until it us on us. It's like watching an elephant walk slowly up our quiet little street but not consciously registering it until it is marching in to our house. Some flares knock me down before I realize they have pushed their way in. On Monday, when she had to fix the covers on her bed umpteen times because they weren't right, I could have done something. Tuesday morning, when she had a harder time than usual putting on her socks, I could have done something then. Tuesday night, her dad got so frustrated he left her room during their bedtime routine because there can be no routine when OCD comes to play. I could have started to push and pull with all my might to get it out right then.
Finally Wednesday, I noticed the huge elephant in our house. I started some flare treatments yesterday and last night was a little better. This morning, a little help picking out the right shorts was all she needed. As we waited for the bus I watched her and her sister, riding bikes, sun gently shining, birds chirping, and I allowed the gratitude to settle in my heart. I used to guard myself against it, because I couldn't stand the fall, but not anymore. After years of dealing with the ups and downs you learn to allow the good to wash over you with gentle acceptance because you know that you will handle the next fall, no matter how bad, no matter how long.
This is how we live here in New England. April showers bring May flowers. We brace against the stormy spring and bask in the sun when it peeks through. We know it might snow but we also know the most beautiful sunny days. There is light, warmth, beauty, and the fact that there will be dark, cold, ugly, does not steal that joy from us anymore. We will not let it. We live with all of it simply because it is. This is life. This is spring. This is PANS.
Strength. Hope. Love. Always.
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