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.
Warrior Moms and Muggles
Thursday, September 29, 2016
Today did not get off to a great start. Well, it did and then it did NOT. A goal/reward got her dressed without one tear. Picture day at school was off to a terrific start. Sadly, the part in her hair did not feel good and so it began. Agitation, frustration, anger. Today the invisible cell we live in with this monster illness got chipped and lost some of it's cloak as she continued her rage outside to the bus stop. She could not, would not pull herself together, and I could not, would not, find any sympathy today. This type of thing pushes you to the brink as a parent and I am not always at my best. We are in this together and I am as tortured a soul about mornings as she is. The guilt of not being a supportive, patient parent rips at me until that bus brings her home to my arms and we can heal. A vulnerable, sick child who should not have to endure this needs a parent who can. I will do better.
Warriors
My heart breaks every day and every day I seal it back up with love and hope and strength because there is no other option. Most of the time, love and hope and strength is found in the words, wisdom, and experience of other parents walking this path. Through the glow of our screens we are connected. moms, and a few dads, any time of day or night, across the world, who come to learn, solve, cry, wail, rage, and only rarely laugh. We give and we take and we seal each other back up and we all keep going. Fighting individual battles in the same war, we understand in a way no one else can. We press on.
Wrought with worry for our children, scanning every horizon for the next illness, and inspecting every behavior change for signs of a flare. Lucky for me, one of these moms lives just 15 minutes from us. Trudging along this path far longer than I, she has been sharing her encyclopedic knowledge of autoimmune disorders with me. When we last met at our little local playground I recognized her pain and her tiredness and her fear. I recognized her resolve when she had absolutely nothing left to give. Resolve to save her child. I recognized myself in her and we were instantly connected with no words. And then with lots of words we found support and connection and we were not alone.
Muggles
Although you can not know this life unless you live it, support sometimes comes from people on the outside; muggles. Family members who put themselves in this world with us, offering support in big and small ways, lending a shelter from the storm for this little love of ours. There is not one moment that lacks gratitude in my heart for these people and nothing is taken for granted.
There are old friends who have known us since way back when and remember the early months when I was so confused, my confidence as a parent suddenly shaken as I was quickly losing ground, unable to help my three-year-old daughter. These friends check in from time to time, just a little text to let me know they are thinking of us. Doing their best to understand even though they walk a different path.
Then there are the newer friends who want to learn and understand, who check in, spend time, ask questions, and sometimes just tell me they miss my face. Silver and gold. All of them. Silver and gold. Last week a newer friend of mine, a muggle on the outside looking in, brought me to tears with a simple text message. Having all the reason in the world to focus on her own troubles this friend reached out to let me know she was thinking of us. Sincere in her efforts to understand; asking questions, encouraging me to stay the course, and checking in with hopeful but realistic inquiry. That "realistic" part is a true gift because it means I don't have to disappoint her. She knows. It is a rare person on the "outside" who can even begin to understand our reality so any effort or interest means a great deal. Connection.
Last week was rough. Many have been rough but last week even more so. This is a progressive illness so if we aren't getting better we're getting worse. It was then that the gift of connection came to me from the across the ocean blue. That mother with a seven-year-old girl who had found this blog and recognized her daughter in my words. This mother recognized an opportunity to connect not only for herself but for our children. Brilliant! New pen pals in the making, and my daughter wrote to her new far-away friend, telling someone for the first time what this illness feels like to her. The following day after school, barely putting her backpack down, she read aloud words from the first friend she's ever had who knows exactly what she is going through. A picture of a sweet child and her cat and suddenly my daughter is not alone.
Connection. Powerful. Affirming. This mom's message sent me back to my blog because I realized someone had read my story, and since this story isn't done I needed to keep writing, no matter how painful.
Invisibility
It is hard to dig deep day after day after night after night and then day after day again. And again. And then again. Two months. Last night it was a full hour of sweet chit-chat and gentle little songs before I felt she was ready for the suggestion of sleep. With all my efforts and love and patience and creativity. With all of my deep breaths and grounding games she still began her dance. This terrible bedtime dance of nightmare thoughts and itchy hair, and a hurty neck. "The nightmare thoughts are coming Mommy! I can't make them stop!" Panting and squirming and fearful, unable to accept my comfort. Last night I managed to dig deep and hang in there for another 20 minutes after the first hour and she finally fell off to sleep in my arms. At 9:30 I ate my dinner.
Digging deep is harder some days. This morning, as my beautiful sweet girl yelled and screamed I could not dig deep. I did not yell. I did not cry. I simply shut down and went about my morning. Finally announcing that it was time to get in the car, 30 minutes after she did not get on the bus, I drove her to school with her loud words bursting through her tears. Pulling in to the muggle drop-off line I hugged her through the wetness and told her to get out of the car. Yes my love, they will see that you've been crying. Yes my sweet your eyes will be red and puffy. The invisibility cloak is losing strength and so am I.
Walking Alone Together
But I press on. A few days ago we hit day 11 of a stronger antibiotic, and when my daughter complained of additional symptoms I pulled the plug on it. There are no clear rights and wrongs. There is no instruction booklet. (God how I have always loved the certainty of instruction booklets.) We move on to another med that makes perfect sense in a different way as all the others have and we hope against hope that this will be our fix. We struggle to keep her healthy and free from viral and bacterial infections while we figure out how to help her through this absolutely maddening course of trial and error. Another illness could spiral us out of this universe in to a very scary place. My mind can not go there. Hope. Strength. Resolve.
So I will write again and again and again until there is nothing left to say. Until this child is happily going about her day-to-day activities with all the carefree energy of a typical 7-year-old I will write. Possibly giving connection to someone out there, searching like I have by the glow of this screen for someone who understands and information that will help. I will take those connections that bring us together across the mountains, across the plains, and across the oceans blue. We walk alone together and we will return our children to their beautiful, healthy selves.
Hope. Strength. Resolve. Even when we can't.
Today did not get off to a great start. Well, it did and then it did NOT. A goal/reward got her dressed without one tear. Picture day at school was off to a terrific start. Sadly, the part in her hair did not feel good and so it began. Agitation, frustration, anger. Today the invisible cell we live in with this monster illness got chipped and lost some of it's cloak as she continued her rage outside to the bus stop. She could not, would not pull herself together, and I could not, would not, find any sympathy today. This type of thing pushes you to the brink as a parent and I am not always at my best. We are in this together and I am as tortured a soul about mornings as she is. The guilt of not being a supportive, patient parent rips at me until that bus brings her home to my arms and we can heal. A vulnerable, sick child who should not have to endure this needs a parent who can. I will do better.
Warriors
My heart breaks every day and every day I seal it back up with love and hope and strength because there is no other option. Most of the time, love and hope and strength is found in the words, wisdom, and experience of other parents walking this path. Through the glow of our screens we are connected. moms, and a few dads, any time of day or night, across the world, who come to learn, solve, cry, wail, rage, and only rarely laugh. We give and we take and we seal each other back up and we all keep going. Fighting individual battles in the same war, we understand in a way no one else can. We press on.
Wrought with worry for our children, scanning every horizon for the next illness, and inspecting every behavior change for signs of a flare. Lucky for me, one of these moms lives just 15 minutes from us. Trudging along this path far longer than I, she has been sharing her encyclopedic knowledge of autoimmune disorders with me. When we last met at our little local playground I recognized her pain and her tiredness and her fear. I recognized her resolve when she had absolutely nothing left to give. Resolve to save her child. I recognized myself in her and we were instantly connected with no words. And then with lots of words we found support and connection and we were not alone.
Muggles
Although you can not know this life unless you live it, support sometimes comes from people on the outside; muggles. Family members who put themselves in this world with us, offering support in big and small ways, lending a shelter from the storm for this little love of ours. There is not one moment that lacks gratitude in my heart for these people and nothing is taken for granted.
There are old friends who have known us since way back when and remember the early months when I was so confused, my confidence as a parent suddenly shaken as I was quickly losing ground, unable to help my three-year-old daughter. These friends check in from time to time, just a little text to let me know they are thinking of us. Doing their best to understand even though they walk a different path.
Then there are the newer friends who want to learn and understand, who check in, spend time, ask questions, and sometimes just tell me they miss my face. Silver and gold. All of them. Silver and gold. Last week a newer friend of mine, a muggle on the outside looking in, brought me to tears with a simple text message. Having all the reason in the world to focus on her own troubles this friend reached out to let me know she was thinking of us. Sincere in her efforts to understand; asking questions, encouraging me to stay the course, and checking in with hopeful but realistic inquiry. That "realistic" part is a true gift because it means I don't have to disappoint her. She knows. It is a rare person on the "outside" who can even begin to understand our reality so any effort or interest means a great deal. Connection.
Last week was rough. Many have been rough but last week even more so. This is a progressive illness so if we aren't getting better we're getting worse. It was then that the gift of connection came to me from the across the ocean blue. That mother with a seven-year-old girl who had found this blog and recognized her daughter in my words. This mother recognized an opportunity to connect not only for herself but for our children. Brilliant! New pen pals in the making, and my daughter wrote to her new far-away friend, telling someone for the first time what this illness feels like to her. The following day after school, barely putting her backpack down, she read aloud words from the first friend she's ever had who knows exactly what she is going through. A picture of a sweet child and her cat and suddenly my daughter is not alone.
Connection. Powerful. Affirming. This mom's message sent me back to my blog because I realized someone had read my story, and since this story isn't done I needed to keep writing, no matter how painful.
Invisibility
It is hard to dig deep day after day after night after night and then day after day again. And again. And then again. Two months. Last night it was a full hour of sweet chit-chat and gentle little songs before I felt she was ready for the suggestion of sleep. With all my efforts and love and patience and creativity. With all of my deep breaths and grounding games she still began her dance. This terrible bedtime dance of nightmare thoughts and itchy hair, and a hurty neck. "The nightmare thoughts are coming Mommy! I can't make them stop!" Panting and squirming and fearful, unable to accept my comfort. Last night I managed to dig deep and hang in there for another 20 minutes after the first hour and she finally fell off to sleep in my arms. At 9:30 I ate my dinner.
Digging deep is harder some days. This morning, as my beautiful sweet girl yelled and screamed I could not dig deep. I did not yell. I did not cry. I simply shut down and went about my morning. Finally announcing that it was time to get in the car, 30 minutes after she did not get on the bus, I drove her to school with her loud words bursting through her tears. Pulling in to the muggle drop-off line I hugged her through the wetness and told her to get out of the car. Yes my love, they will see that you've been crying. Yes my sweet your eyes will be red and puffy. The invisibility cloak is losing strength and so am I.
Walking Alone Together
But I press on. A few days ago we hit day 11 of a stronger antibiotic, and when my daughter complained of additional symptoms I pulled the plug on it. There are no clear rights and wrongs. There is no instruction booklet. (God how I have always loved the certainty of instruction booklets.) We move on to another med that makes perfect sense in a different way as all the others have and we hope against hope that this will be our fix. We struggle to keep her healthy and free from viral and bacterial infections while we figure out how to help her through this absolutely maddening course of trial and error. Another illness could spiral us out of this universe in to a very scary place. My mind can not go there. Hope. Strength. Resolve.
So I will write again and again and again until there is nothing left to say. Until this child is happily going about her day-to-day activities with all the carefree energy of a typical 7-year-old I will write. Possibly giving connection to someone out there, searching like I have by the glow of this screen for someone who understands and information that will help. I will take those connections that bring us together across the mountains, across the plains, and across the oceans blue. We walk alone together and we will return our children to their beautiful, healthy selves.
Hope. Strength. Resolve. Even when we can't.
Desperation and Thin Air - Coping with the ups and downs
Sunday, September 25, 2016
This evening a stranger, soon to be friend, sent me a message on Facebook from the other side of the world. A warrior mom like me, who had read this blog, found me on Facebook, and reached out to forge a connection. Connections. The stuff of life. Who are we by ourselves? In isolation we feel less. Less joy, less love, less connected, floating along from moment to moment doing what needs to be done. Less is how I have lived for the last two months. Then, suddenly a connection to a woman I know all too well despite the fact that I just met her in the few lines of her message this evening. Again I am reminded that I am not alone.
Disconnecting
For two months I've been disconnecting, smiling politely, painfully participating in small talk. Aching to get the gloom out in to the open, to vomit it out everywhere until there is nothing left to expel. In those moments I would prefer to feel empty than carry this weight in the pit of my stomach and in every pulsing cell of my heart. In a world I suddenly, again, don't belong to I am silenced by the questions I know I won't be able to answer. This invisible monster that has taken up residence inside my child again, robbing her, making her feel different, taking so many moments of her childhood away. I can not answer their questions.
This is not something you can think. This slipping away of your child. It is not "just" sensory and scratchy pants. It is not "just" a meltdown about going to bed. It is not "just" anxiety about school. It is not "just" shyness and something she will outgrow. It is not "JUST" anything. It is huge and ugly and not anything you have experienced if you have a healthy typical child. Yes, even if your child gives you a hard time about sleeping, or climbs in to bed with you when she has a nightmare, even if she doesn't like jeans, tantrums about taking a bath, and won't eat anything but macaroni and cheese. That is NOT what this is. Sadly. How I wish it was just that.
Return of the Invisible Monster
It began in July after the girls had a case of Hand-Foot-Mouth, otherwise known as the Coxsackie virus. A typical childhood virus that is typically endured without much afterthought. At the first sign of illness I held my breath and watched for symptoms. After a few days the coast was clear and I let my guard down. Only looking back more than a month later did I realize the sensory symptoms had started to creep in within two weeks of the illness. At first I simply did what we had learned to do. The things I wrote in my previous hopeful post about sleep, baths, supplements, and rest. One week turned to three and suddenly we were a month out, seeing symptoms increase instead of decrease. A call to our doctor had us change the prophylactic antibiotic from twice weekly to daily. This would surely help except it did not. Shit. Worsening symptoms spiraled us in to the worst flare we've had since onset. Sensory at an all time high, raging, yelling, crying for an hour at a time, unable to fall asleep or stay asleep, nightmares, big fears, racing thoughts, and fixating on things being "just so".
Agitation on high and emotions running wild and all happening within the walls of our cute cute little yellow ranch, on this cute cute little street, in this cute cute little town full of friends and people who never see a damn thing. Invisible. Living in an invisible cell that keeps me from walking freely with the muggles. They can't see in and who would want to, really? Visiting hours occur when we are outside of the walls of our home. People approach, smile and ask how we are doing. It is an impossible question to answer in one short visitation so I politely smile back and walk on. They can not see that we are trapped and there is nothing to be done but keep trying, one medication after another, step by step through the painfully slow treatment plans, not knowing if the current med is helping at all or if the next med just may be the sweet key of release. Sometimes I hate visitation for the normalcy it reminds me we have lost.
Drawn back in to a world I never wanted to visit again, in the dark cool dampness of PANS, watching my daughter sink deeper and deeper, straining to get ahead of her and lift her up, as she continues to slip through my fingers. Sinking. That is what a "relapse" feels like. It is terrifying because we know where it can lead. We know the dark abyss she is slipping into and it does not have a bottom. We can only grasp at whatever tools we have to scoop her out before she goes too far. We don't know what tools will reach her so we just keep trying. We don't know how long it will take or how bad it will get and I miss her terribly.
The Blog No One Reads
It has been two months since my last blog post and I have been thinking about writing. I originally created this blog because I needed to describe our incredible journey. Incredibly difficult. Incredibly painful. Incredibly diabolical PANS. Incredibly miraculous healing. My incredible child returned to me. I needed to document our struggle and recovery to make it real and keep it alive. This blog is public but I had only shared it with two people whom I hardly knew because they needed help. It didn't occur to me that anyone was reading these posts so for the last two months, with little energy to spare, I stayed away. Until tonight. A stranger, soon-to-be friend, messaged me about her daughter, seven years old with a younger sister, similar ages as my girls, with similar names (seriously both names the same except for one letter), similar symptoms, and similar struggles across the ocean blue. Connection.
Gasping in Thin Air
So here I am, sharing my pain and telling you that it is not an easy road to recovery. Sometimes hope must be manufactured out of desperation and thin air. At the end of July we started daily Azithromycin and watched symptoms worsen for three weeks. We then spent four weeks on Cefdinir, adding a few other supplements to heal the gut, watching symptoms worsen. That blood work I had been waiting for back in July showed a doubling ANA number once again. Inflammation and symptoms are rising and we don't know why.
This flare. God I hate the word now. FLARE! It's a FLARE! She's in a flare! How often I've yelled those words at my husband when he is at his wit's end with her "behavior". It's a medical condition but it's so personal it pushes every parenting button you've got. Not to mention the sibling buttons as little sis further torments her as a way of coping, maybe payback, likely both. It's just awfully hard. Especially for the child whose body is raging out of control. "Brain on fire" they say and for us, I would add "skin on fire" too. And this time it all seemed to slam down on me out of thin air.
There were several moments today, and in most days lately, when I felt as though I am gasping for emotional breath. Gasping for strength. Tonight, my hands, one on her heart and one on her head, as she fell asleep clutching my arm with nightmare thoughts torturing her. "I am right here. Everything will be okay." is all I could whisper. My head drops and my soul seeks strength from anywhere, and out of thin air it comes. Tomorrow will be better. I press on.
With strength, hope and love,
Resources: Please feel free to leave a message if you have any questions about my blog or the resources listed below. I will do my best to share what I know.
www.pandasnetwork.org "PANDAS Network"
www.nepans.org "New England PANS PANDAS Association
Facebook Support Groups: Search for group and request to join
PANDAS PARENTS
PANDAS/PANS/Lyme/Tick-Borne Diseases
Parents of Kids with PANDAS/PITAND/PANS
This evening a stranger, soon to be friend, sent me a message on Facebook from the other side of the world. A warrior mom like me, who had read this blog, found me on Facebook, and reached out to forge a connection. Connections. The stuff of life. Who are we by ourselves? In isolation we feel less. Less joy, less love, less connected, floating along from moment to moment doing what needs to be done. Less is how I have lived for the last two months. Then, suddenly a connection to a woman I know all too well despite the fact that I just met her in the few lines of her message this evening. Again I am reminded that I am not alone.
Disconnecting
For two months I've been disconnecting, smiling politely, painfully participating in small talk. Aching to get the gloom out in to the open, to vomit it out everywhere until there is nothing left to expel. In those moments I would prefer to feel empty than carry this weight in the pit of my stomach and in every pulsing cell of my heart. In a world I suddenly, again, don't belong to I am silenced by the questions I know I won't be able to answer. This invisible monster that has taken up residence inside my child again, robbing her, making her feel different, taking so many moments of her childhood away. I can not answer their questions.
This is not something you can think. This slipping away of your child. It is not "just" sensory and scratchy pants. It is not "just" a meltdown about going to bed. It is not "just" anxiety about school. It is not "just" shyness and something she will outgrow. It is not "JUST" anything. It is huge and ugly and not anything you have experienced if you have a healthy typical child. Yes, even if your child gives you a hard time about sleeping, or climbs in to bed with you when she has a nightmare, even if she doesn't like jeans, tantrums about taking a bath, and won't eat anything but macaroni and cheese. That is NOT what this is. Sadly. How I wish it was just that.
Return of the Invisible Monster
It began in July after the girls had a case of Hand-Foot-Mouth, otherwise known as the Coxsackie virus. A typical childhood virus that is typically endured without much afterthought. At the first sign of illness I held my breath and watched for symptoms. After a few days the coast was clear and I let my guard down. Only looking back more than a month later did I realize the sensory symptoms had started to creep in within two weeks of the illness. At first I simply did what we had learned to do. The things I wrote in my previous hopeful post about sleep, baths, supplements, and rest. One week turned to three and suddenly we were a month out, seeing symptoms increase instead of decrease. A call to our doctor had us change the prophylactic antibiotic from twice weekly to daily. This would surely help except it did not. Shit. Worsening symptoms spiraled us in to the worst flare we've had since onset. Sensory at an all time high, raging, yelling, crying for an hour at a time, unable to fall asleep or stay asleep, nightmares, big fears, racing thoughts, and fixating on things being "just so".
Agitation on high and emotions running wild and all happening within the walls of our cute cute little yellow ranch, on this cute cute little street, in this cute cute little town full of friends and people who never see a damn thing. Invisible. Living in an invisible cell that keeps me from walking freely with the muggles. They can't see in and who would want to, really? Visiting hours occur when we are outside of the walls of our home. People approach, smile and ask how we are doing. It is an impossible question to answer in one short visitation so I politely smile back and walk on. They can not see that we are trapped and there is nothing to be done but keep trying, one medication after another, step by step through the painfully slow treatment plans, not knowing if the current med is helping at all or if the next med just may be the sweet key of release. Sometimes I hate visitation for the normalcy it reminds me we have lost.
Drawn back in to a world I never wanted to visit again, in the dark cool dampness of PANS, watching my daughter sink deeper and deeper, straining to get ahead of her and lift her up, as she continues to slip through my fingers. Sinking. That is what a "relapse" feels like. It is terrifying because we know where it can lead. We know the dark abyss she is slipping into and it does not have a bottom. We can only grasp at whatever tools we have to scoop her out before she goes too far. We don't know what tools will reach her so we just keep trying. We don't know how long it will take or how bad it will get and I miss her terribly.
The Blog No One Reads
It has been two months since my last blog post and I have been thinking about writing. I originally created this blog because I needed to describe our incredible journey. Incredibly difficult. Incredibly painful. Incredibly diabolical PANS. Incredibly miraculous healing. My incredible child returned to me. I needed to document our struggle and recovery to make it real and keep it alive. This blog is public but I had only shared it with two people whom I hardly knew because they needed help. It didn't occur to me that anyone was reading these posts so for the last two months, with little energy to spare, I stayed away. Until tonight. A stranger, soon-to-be friend, messaged me about her daughter, seven years old with a younger sister, similar ages as my girls, with similar names (seriously both names the same except for one letter), similar symptoms, and similar struggles across the ocean blue. Connection.
Gasping in Thin Air
So here I am, sharing my pain and telling you that it is not an easy road to recovery. Sometimes hope must be manufactured out of desperation and thin air. At the end of July we started daily Azithromycin and watched symptoms worsen for three weeks. We then spent four weeks on Cefdinir, adding a few other supplements to heal the gut, watching symptoms worsen. That blood work I had been waiting for back in July showed a doubling ANA number once again. Inflammation and symptoms are rising and we don't know why.
This flare. God I hate the word now. FLARE! It's a FLARE! She's in a flare! How often I've yelled those words at my husband when he is at his wit's end with her "behavior". It's a medical condition but it's so personal it pushes every parenting button you've got. Not to mention the sibling buttons as little sis further torments her as a way of coping, maybe payback, likely both. It's just awfully hard. Especially for the child whose body is raging out of control. "Brain on fire" they say and for us, I would add "skin on fire" too. And this time it all seemed to slam down on me out of thin air.
There were several moments today, and in most days lately, when I felt as though I am gasping for emotional breath. Gasping for strength. Tonight, my hands, one on her heart and one on her head, as she fell asleep clutching my arm with nightmare thoughts torturing her. "I am right here. Everything will be okay." is all I could whisper. My head drops and my soul seeks strength from anywhere, and out of thin air it comes. Tomorrow will be better. I press on.
With strength, hope and love,
Resources: Please feel free to leave a message if you have any questions about my blog or the resources listed below. I will do my best to share what I know.
www.pandasnetwork.org "PANDAS Network"
www.nepans.org "New England PANS PANDAS Association
Facebook Support Groups: Search for group and request to join
PANDAS PARENTS
PANDAS/PANS/Lyme/Tick-Borne Diseases
Parents of Kids with PANDAS/PITAND/PANS
Hope, Heartache, Hope
July 21, 2016
It has been six months since that amazing day in January when my daughter came back to me. Over the months we've had some setbacks. Symptoms return for a few days here and there. As the flares pass we quickly forget but when they hit it all comes rushing back and in those moments my soul is lost. My child is back in that dark place and we have no way of knowing when or if she will get out.
In the beginning I didn't know what to do. Mind racing. How did this happen? What am I supposed to do? Was she exposed to an infection or virus, has anyone around her been sick, did she have exposure to a toxin, is she reacting to a food or chemical? How do I get her out of there? The fear. Probably for both of us, is almost paralyzing but we don't have time to stand still. Act quickly. Fix it. Before inflammation takes over. Calm her. Heal her. Help her. Trying to throw your drowning child a life preserver in the dark, winds whipping, waves crashing, the floor beneath you heaving, and you don't know which direction is best.
In time we are gaining confidence. Trusting that the odds are very good that she WILL come out of it and that it will only take a few days to make that happen. A week-long flare shook us and a two-week brought us to our knees, but we got back up and we trusted it would be okay. Not blind, unquestioning trust, but enough trust that at least keeps the floor from heaving, our feet planted firmly on what we've learned. Pull back on activities. Earlier bedtime. More supplements for a few days. Extra salt baths. More oils. No sugar. Good food. Deep breath, we're moving past it......and then we have her back. Breath.
In April we got follow up blood work done and it was great news. A relief. My daughter is okay and getting better. Only one more number that needs to come down so one new supplement to help with the stubborn insomnia, a new RX for the inflammation, and we were on our way.
And then, one afternoon, the screaming and the crying. "Mommy WHY do I have to have this? WHY am I only one? I don't want to be different! I am the only one in our family. It's not FAIR! I don't want to have this. What other kid has to have NEEDLES in their arms for blood work? Why does it keep coming back? I hate THIS! Will it ever go away and not come back? Mommy, will it ever just go away?"
Helpless. Unable to protect her. Unable to take this away. I would carry it myself if I could. One hundred times over if I could spare her. With healing comes hope but with hope comes despair in the moment when fears are realized. But now, NOW we know what to do. It is going to be okay. Talk it through. Remember the healing. Remember, my child, how far you have come. How much you have endured. How bad it used to be. You are strong and brave and healthy and amazing. This child of mine. You are okay now and we know what to do. We will weather each storm.
This week we had our second round of blood work drawn and next week I will meet with our physician. My daughter's appetite has dropped fairly significantly over the last few months so we are watching her closely. A slight child she does not have much wiggle room with her weight but so far she is not losing. A persistent clothing sensory defensiveness lurks always just under the surface but most days are good. Sleep has been steady lately but since I just wrote that she'll be up within days (or hours). Shyness still drives her to avoid eye contact and whisper in my ear instead of speaking out loud in front of others. There is something we are missing but I can't put my finger on it. When she has a great day I see all of her. Embracing life. Wearing whatever clothes she wants to and talking to people without hesitation. For now though, we are amazed at how her life has changed. Normal daily activities are now done without issue for the most part. Getting dressed, brushing teeth, brushing hair, putting shoes on, getting in the car, buckling in to her car seat, going to bed...all done without incident most days.
We shall see what the blood work shows next week but I feel positive that we will see further evidence of healing. Maybe then we can begin to take deep breaths and relax a bit more. Not too much but just a bit. Today we are filled with hope.
It has been six months since that amazing day in January when my daughter came back to me. Over the months we've had some setbacks. Symptoms return for a few days here and there. As the flares pass we quickly forget but when they hit it all comes rushing back and in those moments my soul is lost. My child is back in that dark place and we have no way of knowing when or if she will get out.
In the beginning I didn't know what to do. Mind racing. How did this happen? What am I supposed to do? Was she exposed to an infection or virus, has anyone around her been sick, did she have exposure to a toxin, is she reacting to a food or chemical? How do I get her out of there? The fear. Probably for both of us, is almost paralyzing but we don't have time to stand still. Act quickly. Fix it. Before inflammation takes over. Calm her. Heal her. Help her. Trying to throw your drowning child a life preserver in the dark, winds whipping, waves crashing, the floor beneath you heaving, and you don't know which direction is best.
In time we are gaining confidence. Trusting that the odds are very good that she WILL come out of it and that it will only take a few days to make that happen. A week-long flare shook us and a two-week brought us to our knees, but we got back up and we trusted it would be okay. Not blind, unquestioning trust, but enough trust that at least keeps the floor from heaving, our feet planted firmly on what we've learned. Pull back on activities. Earlier bedtime. More supplements for a few days. Extra salt baths. More oils. No sugar. Good food. Deep breath, we're moving past it......and then we have her back. Breath.
In April we got follow up blood work done and it was great news. A relief. My daughter is okay and getting better. Only one more number that needs to come down so one new supplement to help with the stubborn insomnia, a new RX for the inflammation, and we were on our way.
And then, one afternoon, the screaming and the crying. "Mommy WHY do I have to have this? WHY am I only one? I don't want to be different! I am the only one in our family. It's not FAIR! I don't want to have this. What other kid has to have NEEDLES in their arms for blood work? Why does it keep coming back? I hate THIS! Will it ever go away and not come back? Mommy, will it ever just go away?"
Helpless. Unable to protect her. Unable to take this away. I would carry it myself if I could. One hundred times over if I could spare her. With healing comes hope but with hope comes despair in the moment when fears are realized. But now, NOW we know what to do. It is going to be okay. Talk it through. Remember the healing. Remember, my child, how far you have come. How much you have endured. How bad it used to be. You are strong and brave and healthy and amazing. This child of mine. You are okay now and we know what to do. We will weather each storm.
This week we had our second round of blood work drawn and next week I will meet with our physician. My daughter's appetite has dropped fairly significantly over the last few months so we are watching her closely. A slight child she does not have much wiggle room with her weight but so far she is not losing. A persistent clothing sensory defensiveness lurks always just under the surface but most days are good. Sleep has been steady lately but since I just wrote that she'll be up within days (or hours). Shyness still drives her to avoid eye contact and whisper in my ear instead of speaking out loud in front of others. There is something we are missing but I can't put my finger on it. When she has a great day I see all of her. Embracing life. Wearing whatever clothes she wants to and talking to people without hesitation. For now though, we are amazed at how her life has changed. Normal daily activities are now done without issue for the most part. Getting dressed, brushing teeth, brushing hair, putting shoes on, getting in the car, buckling in to her car seat, going to bed...all done without incident most days.
We shall see what the blood work shows next week but I feel positive that we will see further evidence of healing. Maybe then we can begin to take deep breaths and relax a bit more. Not too much but just a bit. Today we are filled with hope.
Celebrating braids and sneakers!
March 8, 2016
We had a pretty amazing few days here! My daughter has not asked for her hair to be done in two years because she couldn't tolerate the feelings and sensations. She wanted wavy hair for school so we braided last night! I kept expecting her to ask me to stop but she didn't. She watched in the mirror, turning her head side to side, smiling at her reflection.
Another special milestone is a little purchase I made while she was at school. I bought a pair of sneakers, brought them home, and she loves them! I can do that now! Just buy something for her that she can wear! It used to take, no exaggeration, a month, many stores, and no less than 20 pair of shoes before she could "settle" on a pair. Then mornings would still be torture having to put them on.
I took a picture this morning that I will always treasure. This little girl with her wavy hair, new sneakers, and a big genuine smile, sitting with her little sister before school. Younger sis is smiling big and I see the calm on her face now that she can relax in the mornings, without being on guard for the thing that will send her sister in to a meltdown. These two sisters can just be kids together.
I would say, there are no words but if you know me you'd know how silly that would sound (obviously no loss for words here). I could go on and on about all the every day little moments I cherish. For today, that is enough. ❤️❤️❤️
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