Sunday, October 9, 2016
Today has been one of those days; jeans, long-sleeved shirt she hasn't worn in six months, hair in a pony tail, and no agitation or emotional lability to speak of. This hasn't happened in months. Fitting, as today is PANDAS/PANS Awareness Day 2016. We've certainly come a long way in just one week. No more huge nighttime fears, insomnia resolved, and only subtle/mild symptoms that I've been able to support her through. It's been one week of calmer, gentler nighttime routines. Grateful is all I can be. Well, grateful and worried but the "worried" comes with the territory. My little one is no longer in the severe phase of this 2.5-month flare but we are not back to 100% yet.
Each day I see some improvement but there are also setbacks. They call it a "saw tooth pattern" of recovery; up, down, up, down. I can do nothing but watch and hope that the ups are higher and the downs are fewer in between. As we bump along with sensory challenges, new symptoms appear. Familiar to me as they come in to focus I recognize the heartbreaking descriptions of each new symptom from the endless posts of mother's who got here before me. Like being surprised by a long-lost friend I never wanted to see again, I suddenly see in my daughter another facet of this illness take form. Out of the fog we check off another symptom and the reality is secured as another nail is pounded in.
Over the last two days my daughter has been tormented by the decision of what to wear, weighing the options of two pieces of clothing she cried saying she didn't know which was the right. No matter the reassurance she was tortured by this simple decision. It sounds trivial but it is paralyzing. With patience and love I stopped my efforts to reassure her and offered to bring the alternative choice clothing with us as backup. Relief. Once we get past the moment it doesn't return and the extra clothes were completely forgotten. The degree of upset caused by such a simple decision unnerves me. What will be next? My mind scans the files I've tucked away describing all the symptoms we haven't yet seen. Which one will be next. There are those I shudder to think could be ours one day.
But THIS morning, we had normal. Although clothing remains mostly torturous, this morning was the exception; a glimpse of what normal and healthy could be for my daughter and our family. I wrack my mind to find some explanation. As I've done for 10 months I review every detail. Why was this morning different? Was there a change in meds? Did she eat something different? Exposure to a germ? More time outside or less? More dairy or sugar? Accidental ingestion of Red 40? Maybe playing in a friend's basement exposed her system to even the slightest amount of dampness or mold? If it is a full moon parasites could be at play. Did I change the timing of a supplement? Is she getting sick? After 10 months of this I am starting to be able to rule things out but it still haunts me, this need to figure it out. A strength overplayed, a weakness leveraged. It occurs to me today that my tenacious attention to detail, this long-standing compulsive need to look in every crevice and consider every perspective and option, is finally coming in quite handy. I am putting the pieces together.
The other symptoms that come and go during the day are agitation and emotional lability. Frustrated by her little sister's taunts, a toy that won't cooperate, or when I can't drop what I'm doing to help her with something, my daughter quickly descends in to an epic meltdown, screaming things that she would never dream of saying when her brain is not under siege. It all sounds like it could be the behavior of a typical kid but I assure you it is not. There is an intensity to her emotions that do not come close to matching the circumstance; it's as if she's suffering an actual trauma, with shock and fear and panic. My adrenaline spikes and I go in to emergency mode, trying to catch her and hold her so she doesn't sink deeper or spiral away from my grasp. Deep breaths. She is coming out of it.
PANS has taught me, tested me, moved me to be better. I have grown stronger and wiser and more patient. I wait, console, and reassure her with each passing episode. Blood work results should be in within days but I don't know what, if anything, they will reveal. I'm experimenting with the timing of the three antimicrobial medicines to see if one of them is causing an increase in agitation. The remaining symptoms could be persisting because I suspect she's been fighting a virus over the few days. She's been coughing a bit and has been very tired. The medications are probably keeping something at bay but that something is in there pushing her just over the limit of her typical healthy behavior. I saw a decrease in appetite again and I am crossing my fingers that it is because of a sneaky virus and not a new symptom to battle.
The days leading up to this day of awareness I've not felt so alone. I've shared posts on my wall and in my old SPD support groups, spreading awareness of this awful illness. I've listened to some pod casts and watched videos from other pandas/pans moms. There are moments I want to shout from the rooftops but for my daughter's privacy I stop myself. This illness is still mostly hidden from those around us who see a shy, slightly awkward, but kind and bright little girl. What goes on behind closed doors and within the walls of her mind would startle most who know her. So I sit with this quiet little blog and I type. I have hope today, as I grow in my knowledge and my own awareness of how to help my daughter.
Strength, love and hope.
And just like that...hope springs eternal!
Later, Sunday, October 2, 2016
In desperation I emailed our doctor and with one simple suggestion hope is restored. Evenings and bedtime are the hardest times of the day for our little love. Huge fears, terrifying thoughts, and overwhelming agitation. A child who has always loved bedtime, stories and cuddles, is tormented when her mind is quiet and the light goes out. Hours of struggle to find peace means she hasn't fallen asleep before 9:30, 10:00 or later in weeks. "Do this." the doctor said and I watched astonished as the sudden change washed over her within minutes.
We brushed teeth and dried hair as she pulsed in and out of big scary feelings. Convincing and reassuring her I did my best to keep us gently moving towards bedtime. Unable to let go of a worry, dissolving in to tears again because she wasn't sure, we repeated the scene that had become the norm. Heartbreaking. The same build up we've experienced every night for a week or two (you lose track of time) as we prepare to end our day.
Deep breaths. Follow the doctor's advice. We got to story time. I had begun to extend our reading time from the typical 20 minutes to 30, 35, 45, because I needed that peace to give me strength for the ensuing storm. There had been no warnings of this nighttime storm as it cruised silently up the coast that very first time. No alerts telling me to prepare. Just a sudden explosion one night, rocking us off our feet. No second warning the next night, or the next or the next but soon I knew in my bones it was coming. I began mentally preparing every night, battening down the hatches. Every day wracking my brain for strategies that might help. Ultimately, failing to find any calm in this storm of her own mind. I had no answers.
The doctor's recommendation was a simple change in timing of a supplement. As I read our story, I watched her, stealing glimpses from the corner of my eye. I sensed and silently pleaded for peace in her mind and body. After about 30 minutes I began to feel a shift; something in the air was different. I have been caught off guard before so I wasn't convinced anything had changed but I was curious. I finished my stories and she did her independent reading by the glow of her book light. After 20 minutes I breathed deeply and with a clenched stomach and calm voice I asked if she was ready to turn off the light. Yes. We kissed, hugged, shared a few thoughts about the week, and I gingerly asked if she wanted me to sing her lullaby. Heart in my stomach this is when the "nightmare thoughts" usually over take her. Not tonight. She held my hand, I gently sang, and my sweet girl closed her eyes and drifted peacefully to sleep. This was the first time in at least two weeks that we didn't have a traumatic time getting to sleep.
My heart is so full it could burst! The peace in my heart is bulging. This is the first time I have felt any hope in weeks. Thank you Dr O.
Hope, strength, love.
In desperation I emailed our doctor and with one simple suggestion hope is restored. Evenings and bedtime are the hardest times of the day for our little love. Huge fears, terrifying thoughts, and overwhelming agitation. A child who has always loved bedtime, stories and cuddles, is tormented when her mind is quiet and the light goes out. Hours of struggle to find peace means she hasn't fallen asleep before 9:30, 10:00 or later in weeks. "Do this." the doctor said and I watched astonished as the sudden change washed over her within minutes.
We brushed teeth and dried hair as she pulsed in and out of big scary feelings. Convincing and reassuring her I did my best to keep us gently moving towards bedtime. Unable to let go of a worry, dissolving in to tears again because she wasn't sure, we repeated the scene that had become the norm. Heartbreaking. The same build up we've experienced every night for a week or two (you lose track of time) as we prepare to end our day.
Deep breaths. Follow the doctor's advice. We got to story time. I had begun to extend our reading time from the typical 20 minutes to 30, 35, 45, because I needed that peace to give me strength for the ensuing storm. There had been no warnings of this nighttime storm as it cruised silently up the coast that very first time. No alerts telling me to prepare. Just a sudden explosion one night, rocking us off our feet. No second warning the next night, or the next or the next but soon I knew in my bones it was coming. I began mentally preparing every night, battening down the hatches. Every day wracking my brain for strategies that might help. Ultimately, failing to find any calm in this storm of her own mind. I had no answers.
The doctor's recommendation was a simple change in timing of a supplement. As I read our story, I watched her, stealing glimpses from the corner of my eye. I sensed and silently pleaded for peace in her mind and body. After about 30 minutes I began to feel a shift; something in the air was different. I have been caught off guard before so I wasn't convinced anything had changed but I was curious. I finished my stories and she did her independent reading by the glow of her book light. After 20 minutes I breathed deeply and with a clenched stomach and calm voice I asked if she was ready to turn off the light. Yes. We kissed, hugged, shared a few thoughts about the week, and I gingerly asked if she wanted me to sing her lullaby. Heart in my stomach this is when the "nightmare thoughts" usually over take her. Not tonight. She held my hand, I gently sang, and my sweet girl closed her eyes and drifted peacefully to sleep. This was the first time in at least two weeks that we didn't have a traumatic time getting to sleep.
My heart is so full it could burst! The peace in my heart is bulging. This is the first time I have felt any hope in weeks. Thank you Dr O.
Hope, strength, love.
Pumpkin Spice and Everything Not so Nice
Sunday, October 2, 2016
Autumnal Rhythm, Jackson Pollock. One of my favorite works of art. Fall is here and it has caught me by surprise. The house is suddenly dressed in gold and rust, pumpkin spice fills the air, and flickering candles glow warmly. These comforting beats, quietly stir a memory from deep within the fog of this illness and it awakes. Plump orange pumpkins, bursting mums, little white ghosts hanging from our tree, and lazy cooking afternoons with the calls of football filtering in from the living room. The memory slowly awakens and sadness fills my heart as an earlier time of peace and joy and autumn is brought back in to my consciousness. This weekend I am finding some painful comfort in these small details as the big details of our world crush me under their weight.
How remarkable the human condition is, adaptable to every situation in every moment, as if it always has been so. To make normal whatever new circumstance is thrust upon it. The unthinkable, the unbearable, miraculously bearable when you find yourself in it. Thoughts of life before are safely tucked away for another time when remembering won't be so painful. I've heard prisoners of war say they had to force themselves to remember one small detail of the world they had lost. The mind, instinctively protecting them from painful memories, tried to convince them that this life in a small dark cell had always been the norm. Wired for survival, a mind sometimes has to forget because remembering would be too painful. We put aside the past for the present and we press on. One day at a time. Adjusting our minds. Adjusting our expectations. Remembering only when we have the will and energy to feel the sorrow for what is lost. The sorrow, in those quite moments, is soul crushing.
Right now I will not remember the details. I will only remind myself that there was another time when my daughter was happy, carefree, and childlike. These comforts of home, warm, golden, spice-filled scents, whisper to a far away place in my mind of a better time. So I take some painful comfort in remembering, but not too much. Hopefully before pumpkins give way to evergreens I will embrace all our memories without sorrow, adjusting to life without this monster once again. Until then, I force myself to be grateful for where we are today because beneath all the pain, I treasure all I have and all we are. Love, strength, and hope.
Autumnal Rhythm, Jackson Pollock. One of my favorite works of art. Fall is here and it has caught me by surprise. The house is suddenly dressed in gold and rust, pumpkin spice fills the air, and flickering candles glow warmly. These comforting beats, quietly stir a memory from deep within the fog of this illness and it awakes. Plump orange pumpkins, bursting mums, little white ghosts hanging from our tree, and lazy cooking afternoons with the calls of football filtering in from the living room. The memory slowly awakens and sadness fills my heart as an earlier time of peace and joy and autumn is brought back in to my consciousness. This weekend I am finding some painful comfort in these small details as the big details of our world crush me under their weight.
How remarkable the human condition is, adaptable to every situation in every moment, as if it always has been so. To make normal whatever new circumstance is thrust upon it. The unthinkable, the unbearable, miraculously bearable when you find yourself in it. Thoughts of life before are safely tucked away for another time when remembering won't be so painful. I've heard prisoners of war say they had to force themselves to remember one small detail of the world they had lost. The mind, instinctively protecting them from painful memories, tried to convince them that this life in a small dark cell had always been the norm. Wired for survival, a mind sometimes has to forget because remembering would be too painful. We put aside the past for the present and we press on. One day at a time. Adjusting our minds. Adjusting our expectations. Remembering only when we have the will and energy to feel the sorrow for what is lost. The sorrow, in those quite moments, is soul crushing.
Right now I will not remember the details. I will only remind myself that there was another time when my daughter was happy, carefree, and childlike. These comforts of home, warm, golden, spice-filled scents, whisper to a far away place in my mind of a better time. So I take some painful comfort in remembering, but not too much. Hopefully before pumpkins give way to evergreens I will embrace all our memories without sorrow, adjusting to life without this monster once again. Until then, I force myself to be grateful for where we are today because beneath all the pain, I treasure all I have and all we are. Love, strength, and hope.
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