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.
Remember this
Sunday, February 26, 2018
She is okay. I check on her every night just before I go to bed. Every night I take her to the bathroom then tuck her right back in. Tonight I popped back in after a minute just to make sure - and she was okay. I started doing this when things were bad, because if she woke in the middle of the night she would be up for hours, lying in bed, unable to sleep. Most nights now, she falls right back to sleep though.
It's been over a month of health and I am so very grateful. This PANS. Our life is "normal" right now and I have to try hard to remember how bad things can be. Sometimes I do it on purpose. Remember. I WANT to remember. I read old blog entries and Facebook posts. I look at old photos, scanning her faces for that look. Memories bust back in and my heart falls. I want to reach in to those memories and scoop her up and hold her until it is all better. I could give her all the dates! I could tell her exactly when the flare will end and how. I could reassure her that the flare isn't going to be "the one" that pushes her to the other side. The darker side. The side I read about every day, in the words of other mothers who can't say that their baby is okay.
So far, we've been lucky. Yup. Lucky that she "only" had terrorizing fears, debilitating tactile sensory issues, massive mood swings, insomnia, and thoughts that won't give her peace. We are lucky because it could be motor and vocal tics, food refusal to the point of feeding tube, paralyzing fear that imprisons her in this house, and rage that makes her hurt herself or others. Nope. None of that. So we are lucky. Isn't that a kick in the gut. Lucky.
Well, she is okay today and has been since early January. I'm hopeful and growing more confident every week. We'll see. My next entry might be hellish but for now, I'm counting my lucky days.
Strength. Hope. Love.
Precious Calm
Monday, January 8, 2018
This will be a quick post to document what I hope is the beginning of another remarkable upswing. (As I type the words the skeptic in me is convinced I've just jinxed myself.) We are day three of calm. Calm mornings, calm afternoons, and calm bedtimes. Color in her cheeks and happy in her eyes. We have started multiple things over the last few weeks so it is impossible to know which one is helping - I will just call it a team win. Anti-viral RX, homeopathy, gfdf (day 6), addressing possible histamine reactions, and a couple of new supplements from our new ND. I suspect it is the anti-histamine efforts busting up this flare but I will never know. And I don't care. I have spent more time waiting and trying one thing at a time then I care to calculate. I just couldn't do it anymore. I needed to make something happen for this poor child. Now that I understand baseline versus flares it is clearer to me what actions must be taken. I had tried our go-to remedy for flares with no success. I moved on to increase calming supplements and detox strategies which brought pockets of relief. I tried increasing a couple of supplements but didn't see much. A local friend happened to be treating histamine in her child at the same time I was struggling to find something to help us so I gave it a try. That same evening she was back. I wasn't sure of it but deep down I saw her coming back.
It has only been 3 mornings of calm so a rebound can not be touted yet. Yet! But I will be back to sing out loud and celebrate her return to calm. I will surely keep you posted.
Strength. Love. Hope.
This will be a quick post to document what I hope is the beginning of another remarkable upswing. (As I type the words the skeptic in me is convinced I've just jinxed myself.) We are day three of calm. Calm mornings, calm afternoons, and calm bedtimes. Color in her cheeks and happy in her eyes. We have started multiple things over the last few weeks so it is impossible to know which one is helping - I will just call it a team win. Anti-viral RX, homeopathy, gfdf (day 6), addressing possible histamine reactions, and a couple of new supplements from our new ND. I suspect it is the anti-histamine efforts busting up this flare but I will never know. And I don't care. I have spent more time waiting and trying one thing at a time then I care to calculate. I just couldn't do it anymore. I needed to make something happen for this poor child. Now that I understand baseline versus flares it is clearer to me what actions must be taken. I had tried our go-to remedy for flares with no success. I moved on to increase calming supplements and detox strategies which brought pockets of relief. I tried increasing a couple of supplements but didn't see much. A local friend happened to be treating histamine in her child at the same time I was struggling to find something to help us so I gave it a try. That same evening she was back. I wasn't sure of it but deep down I saw her coming back.
It has only been 3 mornings of calm so a rebound can not be touted yet. Yet! But I will be back to sing out loud and celebrate her return to calm. I will surely keep you posted.
Strength. Love. Hope.
and we all fall down
Wednesday, December 27, 2017
We got lost some time in early November. I think the seeds were planted when she got a head cold in September. A virus that usually sends her spiraling downward, I fought back with all I had learned, and we won, and the beat went on, Health. Happiness. Freedom. Fighting back a PANS flare was like wielding a new found superpower! Powerful and power-filled. I would not let it erase 3 months of beautiful, profound, deepening, health.
Early November, her sister and I caught a mild stomach bug and although she didn't catch it, we started to see PANS symptoms. Once again, I threw everything I had at it to stop the flare from progressing. This time it wasn't as easy or as quick but I felt we were making progress. Sadly, a week and a half later she caught another head cold and all the health we had gained spiraled away from us.
PANS. How easy it was for me to intentionally forget. Blocked from my consciousness I erased the volatility we had been living with for years. We had found "it", figured it out, and she was better now. Three months of health that I could not have imagined, allowed me to erase the volatility of PANS and take comfort at last. My daughter was okay.
The brutality of PANS is monstrous. Months of healthy carefree happiness, stolen in the dark of night. This flare tip-toed around us for a while, creeping closer, slipping further away, and rushing back in to startle us aware. Like a slow motion horror film, dragging my daughter away from me, down in to a deep black hold that has no bottom. Clinging to her with one hand, while my other throws various supplements, medications, and treatments at it. Sighing with relief as she surfaces, if only for an afternoon, it means I have not lost this battle. I still have her in my grasp. I will not let go. It will not get her again.
It has been almost two months now and we are bumping along with good days and bad days. Good nights and not so good nights BUT no horrible nights so we are grateful. Grateful. (humpf) We've tried a couple of new therapies to modulate the immune system; one created more extreme emotional lability so we've put it on hold, and one seems to be helping so we're stepping it up. Only time will tell.
What next? Where does this leave us? When she returns to full health again, which I confidently hope to see within the next two weeks (hope springs eternal), where will we be? Those three months were a gift of precious magnitude that we will likely never have again. The health may come, but the confidence and peace will likely never settle in my heart again. Perhaps when she is grown? Will I let my guard down then?
PANS has taught us fear but life teaches us resilience. Faith may be creeping back in to my heart. Long lost faith. Quieting the noise and the learning and the research, I am learning to trust my instinct even more when it comes to what she needs next. And I press on.
We all fall down...rest, recuperate, recover. Such is life.
Strength. Hope. Love.
We got lost some time in early November. I think the seeds were planted when she got a head cold in September. A virus that usually sends her spiraling downward, I fought back with all I had learned, and we won, and the beat went on, Health. Happiness. Freedom. Fighting back a PANS flare was like wielding a new found superpower! Powerful and power-filled. I would not let it erase 3 months of beautiful, profound, deepening, health.
Early November, her sister and I caught a mild stomach bug and although she didn't catch it, we started to see PANS symptoms. Once again, I threw everything I had at it to stop the flare from progressing. This time it wasn't as easy or as quick but I felt we were making progress. Sadly, a week and a half later she caught another head cold and all the health we had gained spiraled away from us.
PANS. How easy it was for me to intentionally forget. Blocked from my consciousness I erased the volatility we had been living with for years. We had found "it", figured it out, and she was better now. Three months of health that I could not have imagined, allowed me to erase the volatility of PANS and take comfort at last. My daughter was okay.
The brutality of PANS is monstrous. Months of healthy carefree happiness, stolen in the dark of night. This flare tip-toed around us for a while, creeping closer, slipping further away, and rushing back in to startle us aware. Like a slow motion horror film, dragging my daughter away from me, down in to a deep black hold that has no bottom. Clinging to her with one hand, while my other throws various supplements, medications, and treatments at it. Sighing with relief as she surfaces, if only for an afternoon, it means I have not lost this battle. I still have her in my grasp. I will not let go. It will not get her again.
It has been almost two months now and we are bumping along with good days and bad days. Good nights and not so good nights BUT no horrible nights so we are grateful. Grateful. (humpf) We've tried a couple of new therapies to modulate the immune system; one created more extreme emotional lability so we've put it on hold, and one seems to be helping so we're stepping it up. Only time will tell.
What next? Where does this leave us? When she returns to full health again, which I confidently hope to see within the next two weeks (hope springs eternal), where will we be? Those three months were a gift of precious magnitude that we will likely never have again. The health may come, but the confidence and peace will likely never settle in my heart again. Perhaps when she is grown? Will I let my guard down then?
PANS has taught us fear but life teaches us resilience. Faith may be creeping back in to my heart. Long lost faith. Quieting the noise and the learning and the research, I am learning to trust my instinct even more when it comes to what she needs next. And I press on.
We all fall down...rest, recuperate, recover. Such is life.
Strength. Hope. Love.
A Night to Remember
Monday, October 30, 2017
I'm sitting here on a rainy, windy, Monday morning, wanting to write something profound about my daughter's illness and recovery. Strangely, I'm a feeling a little unsettled that I have nothing to write. We've been treating chronic lyme, several co-infections, for months now, using herbal tinctures recommended by Stephen Buhner in his Healing Lyme books, and a protocol of nutritional supports. Typically, when I've felt inclined to write, I could come here and let it all pour out, but today the inclinations brought me to a blank page. Nothing bubbling over, no emotions running raw. Still, I am compelled for some reason, so I sit.
Healing is a journey just as illness was but almost ellusive in its conscious experience. I set out many years ago to figure out what was wrong with my daughter. I needed to "fix" my kid. A phrase that doesn't sound right to me now, sitting here in relative calm, knowing my little girl is mostly healthy. "Fix my kid" sounds blunt and detached, but in those dark moments when the world was crashing down around us, screams heard throughout the house and into the street I am sure, those were the words that reverberated up and out from the depths of my soul. In those darkest of hours, screams of spiders that were not there and "bad thoughts" that stormed in to her head as we turned out the light each night. Screams that startled me upright from a sound sleep, bolting to grab her and hold her, desperately trying to bring her a sense of safety and comfort. My baby, shaking with fear, eyes darting around a darkened room, legs flailing away at the invisible assaults she felt just as surely as I felt the weight of her in my arms. In those moments, in those desperate moments a parent screams in to the silence, I NEED TO FIX MY KID.
My silent mind screaming, I had to fix this. It was all I could think. How on earth I cared for the rest of my family in those days I do not know. A distant foggy memory stored at the forefront of my memory, standing ready at the call, for the moments I remember. And I remember. The fog lifts and there it is, in my face, so close I can feel the stone in my heart and the adrenaline in my veins, and the shaking light weight of her in my arms. A memory that is far away until it comes rushing back and takes my breath away. I needed to fix my kid. Why can't anyone help me. Screaming silently in to the blackness of the night and of the illness and of the hell she was in.
I broke that silence with a friend one night. A wonderful light in the world, this friend had helped me get my daughter through one of her worst nights. I didn't write everything about what was happening, but the following messages started at 10:39 and continued through the early morning hours.
Later
Later
Later
Later
I just kept thinking, I can not let her suffer. It's been too long, too hard, and I've got to fix this before it is too late. I didn't know what "too late" meant but when your child is sick and tortured a parent just feels a sense of urgency. And now, we have healing. But those memories are on guard, ready to pour back in, and sometimes they do. Out of nowhere I realize my adrenaline has spiked, as I pick up on the teeniest tiniest fluke in her behavior. Every little thing could be the start of a big thing. A stuffy nose could send us spiraling. But for now, I have fixed my kid. For now.
Strength. Hope. Love.
I'm sitting here on a rainy, windy, Monday morning, wanting to write something profound about my daughter's illness and recovery. Strangely, I'm a feeling a little unsettled that I have nothing to write. We've been treating chronic lyme, several co-infections, for months now, using herbal tinctures recommended by Stephen Buhner in his Healing Lyme books, and a protocol of nutritional supports. Typically, when I've felt inclined to write, I could come here and let it all pour out, but today the inclinations brought me to a blank page. Nothing bubbling over, no emotions running raw. Still, I am compelled for some reason, so I sit.
Healing is a journey just as illness was but almost ellusive in its conscious experience. I set out many years ago to figure out what was wrong with my daughter. I needed to "fix" my kid. A phrase that doesn't sound right to me now, sitting here in relative calm, knowing my little girl is mostly healthy. "Fix my kid" sounds blunt and detached, but in those dark moments when the world was crashing down around us, screams heard throughout the house and into the street I am sure, those were the words that reverberated up and out from the depths of my soul. In those darkest of hours, screams of spiders that were not there and "bad thoughts" that stormed in to her head as we turned out the light each night. Screams that startled me upright from a sound sleep, bolting to grab her and hold her, desperately trying to bring her a sense of safety and comfort. My baby, shaking with fear, eyes darting around a darkened room, legs flailing away at the invisible assaults she felt just as surely as I felt the weight of her in my arms. In those moments, in those desperate moments a parent screams in to the silence, I NEED TO FIX MY KID.
My silent mind screaming, I had to fix this. It was all I could think. How on earth I cared for the rest of my family in those days I do not know. A distant foggy memory stored at the forefront of my memory, standing ready at the call, for the moments I remember. And I remember. The fog lifts and there it is, in my face, so close I can feel the stone in my heart and the adrenaline in my veins, and the shaking light weight of her in my arms. A memory that is far away until it comes rushing back and takes my breath away. I needed to fix my kid. Why can't anyone help me. Screaming silently in to the blackness of the night and of the illness and of the hell she was in.
I broke that silence with a friend one night. A wonderful light in the world, this friend had helped me get my daughter through one of her worst nights. I didn't write everything about what was happening, but the following messages started at 10:39 and continued through the early morning hours.
*****************************************
Ba
Omg [FRIEND] I am at my breaking point. Only I don't have the luxury of breaking. Amelia has completely relapsed. I am so mentally and physically exhausted. I just can't believe that it keeps getting worse every day. Praying to a God I don't believe in that this new antibiotic works and we get relief in the next couple of days. Send me strength.
Later
The symptoms are more severe now and so hard. She has been freaking out on and off since 830 bedtime. Ocd about everything related to sleep. I get her calmed down and we lie down. And within 10 mins she's kicking and agitated again. Now upset that stuffed animals aren't placed right. Earlier bc her hair felt itchy on her neck and pillow. Last night up for 2 hours with joint pain.every morning huge meltdowns and even some rages about clothing.
Later
Now she's crying. I can't help her and it's killing me
Later
I just had her come in to my arms and I held her firmly. Talked through a couple things. I think it was a panic attack. When I held her she cried that she didn't know what to wear. Now she's calm and chit chatting. Incessant chatter. Questions and thoughts keep pouring out.
Later
I can't believe she's still awake. Says she's going to open a store for organic food and put up a sign up for people with disorders so they know it's safe to eat.
Later
Now talk of death. Signing off to do that grounding thing.n thank you so much! I feel better able to help her now. Oh and "how did the George Washington die?"
I hardly remember messaging you last night. I was so exhausted and scared. Thank you for being there. She fell asleep in my arms at midnight. Then at 2AM woke me up with kicking and jerking her legs. Very agitated but half asleep. I sat in the recliner with her on my chest like you would an infant and it seemed to calm her.
Later
It could be a progression of the PANS symptoms or it could be a bad reaction to a new antibiotic we added yesterday and a change in supplement dosage. I let her sleep in and drove her to school this morning. She was still a bit manic but functioning pretty well.
Thanks so much for being there. 
******************************************************************
I just kept thinking, I can not let her suffer. It's been too long, too hard, and I've got to fix this before it is too late. I didn't know what "too late" meant but when your child is sick and tortured a parent just feels a sense of urgency. And now, we have healing. But those memories are on guard, ready to pour back in, and sometimes they do. Out of nowhere I realize my adrenaline has spiked, as I pick up on the teeniest tiniest fluke in her behavior. Every little thing could be the start of a big thing. A stuffy nose could send us spiraling. But for now, I have fixed my kid. For now.
Strength. Hope. Love.
Freedoms Rediscovered
Wednesday, September 20, 2017
Tonight I went to my first PTO meeting and I stood in that room feeling lucky, not to be there, but to be ABLE to be there. I was there without worry or doubt, knowing my daughter is free from the symptoms of a horrid illness that has plagued her for so many years. Free from the need to have me and only me there at the time of day when symptoms could be at their worst.
This has been a long time coming. I wasn't sure it would ever happen.
When your child is sick but doesn't look it. When the symptoms require that you be with them, and leaving would amount to abandonment in the darkest hours of their day. Years of heartbreak and hope. Watching them struggle with what comes easy to most of their peers. Five years of being the only one who could be there, not because I wouldn't let my husband help but because he couldn't. As much as he wanted to and as much as he tried, she couldn't be without me. Some of the worst parts were that friends and family assumed I was just being over protective, while others went so far as to say we were coddling her and making things worse. The worst part was knowing that when I had to leave, it could be torture for her. Being your child's Only Person is not only incredibly hard, it is sad because you know they are imprisoned. Your child is not free. You accept your own confinement but to see your child cornered by her own mind and body is heartbreaking.
Tonight I was not needed. I was away in the hours that lead up to bedtime and I did not nervously hold my phone, waiting for the text to call me home. I knew she was okay. It was a great evening and I came home to two happy children and a father who can finally parent his first born again. Finally. We are whole again.
Strength. Hope. Love.
Tonight I was not needed. I was away in the hours that lead up to bedtime and I did not nervously hold my phone, waiting for the text to call me home. I knew she was okay. It was a great evening and I came home to two happy children and a father who can finally parent his first born again. Finally. We are whole again.
Strength. Hope. Love.
A New Chapter
Sunday, September 3rd, 2017
If you don't quite understand how medical illnesses and underlying nutritional deficiencies cause anxiety in a child, I could explain. If you want to understand how OCD, terrifying fears, insomnia, clothing sensory, and emotional outbursts can be caused by a stealthy underlying infection, just ask. My daughter has busted through two more milestones in the last 24 hours that she's been struggling with for 4 years. She has broken through.
If you don't quite understand how medical illnesses and underlying nutritional deficiencies cause anxiety in a child, I could explain. If you want to understand how OCD, terrifying fears, insomnia, clothing sensory, and emotional outbursts can be caused by a stealthy underlying infection, just ask. My daughter has busted through two more milestones in the last 24 hours that she's been struggling with for 4 years. She has broken through.
FOUR YEARS of illness. Four years of pain. Four years of asking, why. Four years of pediatricians who couldn't help. Four years of people giving me well-intended but infuriating parenting advice. Four years of research, learning, fighting, tests, $$$, heart-breaking setback after heartbreaking setback. Four years, each one building upon the other, to give us the knowledge we needed to figure this out. Four years of kinship with other warrior moms, trying to heal their kids of all kinds of illness; pandas, pans, Lyme, ADHD, odd, asd, Tourette's, anorexia, and of course, spd. Moms who refuse to settle for, "this is just the way it is".
And just as I knew four years ago, deep in my bones and in my soul, that something wasn't right, I know now that something is. This is not the fragile, teetering, temporary improvement we've seen so many times before. I can feel it in my bones and my soul is whispering to me....we're on to something and she is healing. 💕
To every friend, old and new, who has been there with me, thank you. Thank you for listening to me drone on about the dangers of chemicals, toxins, and vaccines for our kids. My winding explanations of methylation and detoxification. Cell mimicry, auto-antibodies, glutamate, and inflammation. To the moms who have been on this path much longer than I, who shared their knowledge and set me right, (you know who you are), a special thank you from the bottom of my heart. I know there will be issues to contend with, and future illnesses can set us back, so this is not the end of her story; but is the beginning of another chapter.
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