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.
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. ❤️❤️❤️
Singing out loud.
My daughter has always been shy and since her anxiety symptoms started a couple of years ago she is painfully uncomfortable having all eyes focused on her. In the classroom it took her months of gentle encouragement by some wonderful teachers for her to be able to speak out loud, answer questions, and participate in classroom discussions. A few months ago I got a progress report from her music teacher stating that she was not "consistent in her efforts" and was performing below expectations for the period. I was surprised because this first-born child has always done her best in school, participating and cooperating with respect and good intention.
When I met with the teacher she confidently explained that my daughter refused to participate and wouldn't sing loud enough for anyone to hear. Specifically, she mouthed the words but no one could hear her voice when it was her turn to sing a short solo line. Really? THAT is what the problem is? Of course she isn't going to sing out loud in front of the whole class! The same issue came up last year and I thought the teacher had understood. Back then, the teacher had told this child that she had to sing loudly right then and there with all her peers watching. Eyes brimming with tears, my daughter couldn't perform and hated to disappoint her teacher, so those tears spilled down her cheeks. Later, her classroom teacher told me the music teacher walked my daughter back to classroom that day and spent extra time reassuring her that she wasn't mad. Since then music has been one of her least liked classes. I took her weekly classroom schedule off the refrigerator because mornings were hard enough without seeing "Music" on the schedule. I hated that such a beloved subject to both of us had become so stressful.
So here we are again a year later. This music teacher telling me she believed my daughter would participate more if there weren't another very quiet child in class who also refused to sing out loud and negatively impacting her. I called on all my inner strength not roll my eyes and tell her what I really thought. Instead, I let her in on some of the struggles we were facing. I explained that she may never be comfortable singing in front of others and that I was perfectly fine if that were the case. I also explained that if music class grades were based primarily on solo vocal performances I was perfectly fine with my daughter failing her class. I wrapped up our conversation asking when she begin teaching a broader lesson plan, incorporating instruments, theory, and history. The teacher stumbled a bit, said it would come in the later years of elementary school, and stated that music history is boring for children. Astounded with her response I couldn't hide the look of surprise on my face. I let her know my daughter would be ready, as she already loves listening to pieces like Smetena's "The Moldau", learning about the composer, the time in history, and contemplating the meaning and emotions within the music.
Well, sometimes this child surprises me. This discussion occurred about a month before we started PANS treatments. One and a half months later I received the following email from the music teacher.
When I met with the teacher she confidently explained that my daughter refused to participate and wouldn't sing loud enough for anyone to hear. Specifically, she mouthed the words but no one could hear her voice when it was her turn to sing a short solo line. Really? THAT is what the problem is? Of course she isn't going to sing out loud in front of the whole class! The same issue came up last year and I thought the teacher had understood. Back then, the teacher had told this child that she had to sing loudly right then and there with all her peers watching. Eyes brimming with tears, my daughter couldn't perform and hated to disappoint her teacher, so those tears spilled down her cheeks. Later, her classroom teacher told me the music teacher walked my daughter back to classroom that day and spent extra time reassuring her that she wasn't mad. Since then music has been one of her least liked classes. I took her weekly classroom schedule off the refrigerator because mornings were hard enough without seeing "Music" on the schedule. I hated that such a beloved subject to both of us had become so stressful.
So here we are again a year later. This music teacher telling me she believed my daughter would participate more if there weren't another very quiet child in class who also refused to sing out loud and negatively impacting her. I called on all my inner strength not roll my eyes and tell her what I really thought. Instead, I let her in on some of the struggles we were facing. I explained that she may never be comfortable singing in front of others and that I was perfectly fine if that were the case. I also explained that if music class grades were based primarily on solo vocal performances I was perfectly fine with my daughter failing her class. I wrapped up our conversation asking when she begin teaching a broader lesson plan, incorporating instruments, theory, and history. The teacher stumbled a bit, said it would come in the later years of elementary school, and stated that music history is boring for children. Astounded with her response I couldn't hide the look of surprise on my face. I let her know my daughter would be ready, as she already loves listening to pieces like Smetena's "The Moldau", learning about the composer, the time in history, and contemplating the meaning and emotions within the music.
Well, sometimes this child surprises me. This discussion occurred about a month before we started PANS treatments. One and a half months later I received the following email from the music teacher.
"Good Afternoon,
I have been meaning to email you since Friday! I was so proud of [her] last Friday in music class! We are playing a game where students have to sing a small part alone and other students have to guess who was singing. Not only did [she] volunteer, we were able to get her singing loud enough for students to hear! YAY!!! I told her I was so proud of her and I would also email you. She seemed very happy and I hope this continues!"
Good for you kiddo! Glad she is enjoying music class again. But still don't care if she performs. As a side note, I am a talker. You can't shut me up when I get going, but there is no way I will sing for you. Not going to happen. Some of this has nothing to do with PANDAS/PANS - it is just apples and trees. So kudos my daughter for doing something you never thought you'd do!
Good for you kiddo! Glad she is enjoying music class again. But still don't care if she performs. As a side note, I am a talker. You can't shut me up when I get going, but there is no way I will sing for you. Not going to happen. Some of this has nothing to do with PANDAS/PANS - it is just apples and trees. So kudos my daughter for doing something you never thought you'd do!
We Have paddles!
February 27, 2016
We may still be up the creek but at least we have paddles!
Summary of report from our test results meeting on Tuesday: "The test results show immune dysregulation (both inflammation and lack of mounting an appropriate immunity), INFLAMMATION (high WBC, CRP, ANA, high centromere, high brain antibodies) and evidence of PANDAS/PANS. In addition, ... metabolic problems including MTHFR defect and folate antibodies indicating a need for FOLINIC ACID (LEUCOVORIN). We need to treat each of these... continue to prevent further infections and boost her immune system."
The human mind continues to baffle me, particularly the way mine insists on trying to make everything okay. It's a gift to be programed to see the positive side of things, to feel mostly optimistic, the mind instinctively seeks to find solutions in the face of problems. It's a quality that sustains you through rough times, gifting you with the ability to live life to the fullest with joy and deep gratitude. Then again, "a strength overplayed"; this insistent need for everything to be "okay" and make it so when things are very clearly not at all okay. I am slow on the uptake.
Navigating the ups and downs
We returned home from our consult with Dr. O on Tuesday to find a child flaring. That's the insider term: flares are known as the sudden onset of intense symptoms that come out of nowhere because the immune system sees things before we do. A day later her sister is coughing and dripping with a serious cold (at least we hope it is viral and not the return of her strep infection). After a full month and one week of beautiful calm we watched our daughter dissolve in to that dark place, screaming in frustration and anger, sobbing with overwhelming disappointment and sadness, manically bouncing around, loudly keeping her body active during the in-between times when emotions are not running high. Sleep is disturbed and mornings are more intense once again. It is not as bad as it was but still a stark contrast to what the last month has been.
We may be up the creek but at least we now have paddles! To look on the positive side, because that is what my mind must do, we are thankful to have a game plan this time. For the first time, we know. We immediately increased supplements that target symptoms, added medications that address infection and inflammation, and are doing our best to keep her calm. By yesterday afternoon she was better. The symptoms are still there but far more manageable than they would have been a month ago when we didn't know how to help. I am not feeling so utterly helpless now...at least not all the time.
I still want to make this go away. To think it in to some reasonable and manageable thing. But this is where we are. Learning, watching, protecting, supporting. Parenting, in just a bit of a different way.
We may still be up the creek but at least we have paddles!
Summary of report from our test results meeting on Tuesday: "The test results show immune dysregulation (both inflammation and lack of mounting an appropriate immunity), INFLAMMATION (high WBC, CRP, ANA, high centromere, high brain antibodies) and evidence of PANDAS/PANS. In addition, ... metabolic problems including MTHFR defect and folate antibodies indicating a need for FOLINIC ACID (LEUCOVORIN). We need to treat each of these... continue to prevent further infections and boost her immune system."
The human mind continues to baffle me, particularly the way mine insists on trying to make everything okay. It's a gift to be programed to see the positive side of things, to feel mostly optimistic, the mind instinctively seeks to find solutions in the face of problems. It's a quality that sustains you through rough times, gifting you with the ability to live life to the fullest with joy and deep gratitude. Then again, "a strength overplayed"; this insistent need for everything to be "okay" and make it so when things are very clearly not at all okay. I am slow on the uptake.
Conversations with Myself
Me: So she probably shouldn't be around anyone who has or has recently had an infection. How the heck will that work with school?
Me: Well, the prophylactic antibiotics will provide some defense.
Me: Okay. What about colds and viruses? Anything that triggers an immune response causes really tough behavioral symptoms.
Me: The Lysine is an anti-viral and if we see symptoms and there haven't been known infectious triggers we treat with an additional antiviral.
Me: So, infectious trigger = increase antibiotic for five days. Viral trigger = provide additional antiviral. Got it. The doctor also said we can also increase the yeast probiotic when we see symptoms flare.
Me: Yes. And remember, we are treating the underlying conditions as we go, hoping to repair damage and boost the immune system. It is a slow process, with lots of ups and downs, trial and error, and hopefully more steps forward than backward.
Me: Okay. We got this.
Me: Okay. We got this.
Reality
My daughter has an autoimmune disorder. Something in her body doesn't work the way it should to keep her safe and healthy. It sinks it to varying degrees in fits and starts. A new normal. How do we compensate for what her body can not do for her? My immune system reacts to these invisible triggers and I am unaware; it does what it needs to do. My daughter's immune system reacts and we see behavioral symptoms like sensory issues (clothing feels so horrible that getting dressed is a traumatic experience for all), heightened agitation (sudden angry reactions to seemingly benign stimulus), emotional lability (extreme emotional reactions to just about everything, all day long, day after day), insomnia (waking up multiple times a night, unable to fall back to sleep for any length of time), OCD (although fleeting and mild we began to see obsessive thoughts and behaviors just before we started treatment). There is more but those are the big ones.
One Size Does NOT Fit All
The descriptions on the PANDAS Network website explains why we delayed seeking a diagnosis for so many months and why some children suffer for years longer than necessary. Delayed treatment can result in permanent neurological damage and additional medical complications, making treatment and recovery far more complex. "Some children's onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end."
Always able to hold it together outside of the home we incorrectly concluded that our daughter was "capable" of controlling herself and her emotions but for some reason was choosing to act out at home. We've also learned that not all children have overnight sudden onset like so much of the literature describes.
Always able to hold it together outside of the home we incorrectly concluded that our daughter was "capable" of controlling herself and her emotions but for some reason was choosing to act out at home. We've also learned that not all children have overnight sudden onset like so much of the literature describes.
"PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset."
This was our pattern. We saw temporary yet intense increases in sensory issues, agitation, and emotional lability for a year or more before the acute onset of debilitating symptoms in the summer of 2014.
This was our pattern. We saw temporary yet intense increases in sensory issues, agitation, and emotional lability for a year or more before the acute onset of debilitating symptoms in the summer of 2014.
I am not sure. Seeking to accept and devour each piece of information, to view this illness from every possible perspective, twisting the mind to find a sense of security in a new "normal" that is unpredictable, can all be utterly exhausting. Feeling confident about handling something we don't fully understand, learning to manage variables that are not within our control, honing skills to recognize seemingly random and invisible symptoms: this is the new normal. The balance between keeping your child safe and protected while giving them a full life, rich in experience is something we begin to practice.
Navigating the ups and downs
We returned home from our consult with Dr. O on Tuesday to find a child flaring. That's the insider term: flares are known as the sudden onset of intense symptoms that come out of nowhere because the immune system sees things before we do. A day later her sister is coughing and dripping with a serious cold (at least we hope it is viral and not the return of her strep infection). After a full month and one week of beautiful calm we watched our daughter dissolve in to that dark place, screaming in frustration and anger, sobbing with overwhelming disappointment and sadness, manically bouncing around, loudly keeping her body active during the in-between times when emotions are not running high. Sleep is disturbed and mornings are more intense once again. It is not as bad as it was but still a stark contrast to what the last month has been.
We may be up the creek but at least we now have paddles! To look on the positive side, because that is what my mind must do, we are thankful to have a game plan this time. For the first time, we know. We immediately increased supplements that target symptoms, added medications that address infection and inflammation, and are doing our best to keep her calm. By yesterday afternoon she was better. The symptoms are still there but far more manageable than they would have been a month ago when we didn't know how to help. I am not feeling so utterly helpless now...at least not all the time.
I still want to make this go away. To think it in to some reasonable and manageable thing. But this is where we are. Learning, watching, protecting, supporting. Parenting, in just a bit of a different way.
Our Daughter's Return
February 22, 2016
Healing
Healing
It couldn't be this simple. Story after story of children lost in this illness after years of treatments, it couldn't be this simple for us. Kids spiraling out of control, downward in to a hell made of their own minds. Painful IVIG treatments providing brief glimpses of healing only to have symptoms return and snatch children away again and again. Test after tests that uncovered nothing or everything. Parents forced to quit their jobs because their children could not be left alone, could not function at school, and had no one to help them. Families isolated from the lives they once knew because children were too sick or too afraid to leave their homes, as terrifying anxiety and OCD gripped their young minds. Children, having had every treatment available, being admitted to psychiatric hospitals because they can no longer be cared for at home. And yet, here we were just weeks in to treatment, seeing almost a complete turnaround. Three supplements. Could three supplements really relieve almost all of our sensory symptoms? Tame the agitation? Restore calm? Bring the gift of peace to this child's mind, body, and home?
Dr. O was complete in her assessment, reviewing every medical detail of my pregnancy and the birth of our daughter. Explaining that the antibiotics I took during my pregnancy would have affected the flora in my daughter's gut, as would the antibiotics given to me during delivery, and all the courses she had as an infant for the many infections caught at daycare. "She will have a strong immune system." people consoled when every six weeks a new cold turned in to yet another raging sinus or ear infection. Oh how I wish that could have been, but in reality the opposite was true. For whatever reason, perhaps a predisposition from the beginning, our baby was not bolstered by all the illness but weakened by it. The antibiotics only served to complicate existing gut and immunity vulnerabilities.
Perhaps a flu shot at a time when our preschooler was sick and her immune system compromised, could have been the weight that tipped the scale. Maybe there was just one infection too many or a badly timed virus. That high fever she had at age three or four, followed by a rash and eventually peeling hands and feet could have been a case of undiagnosed strep. We will likely never know, but somewhere along the line things went wrong, the immune system was damaged, and illness set in, slowly building toxins in her system and causing inflammation in the brain.
Dr O ordered more blood work than I could have imagined. She drew the blood herself, softly reassuring my daughter (and me) that it would be over soon. As I held a pleading, scared child on my lap I wanted nothing more than to take the pain and fear away. It hurt. It took a long time and even longer when the first vein collapsed and the other arm had to be had. Two hours after we had arrived we departed with more information, some good theories of what was going on, and a very traumatized little girl.
I want her to remember the beautiful dogs that played with her, licking her face until she giggled out loud. I want her to remember the artwork she was asked to create to hang on the wall of fame. I want my daughter to remember the amazingly smart and kind doctor who understood exactly what we were going through because she had walked her son through the darkness of this illness when he was stricken years earlier. I want to erase the blood from her memory but I can only keep the other memories alive by remembering with her, the day we found someone who could help.
Our parting gifts looked simple enough; a therapeutic grade detoxification probiotic, yeast supplement called Saccharomyces Boulardii, and a bottle of Lysine which can be found in any pharmacy. Continue with her regular vitamins, the magnesium drink, and the Epson salt baths we had been doing for months. We packed up our bag, scooped up our daughter, and drove the 2-hour ride home with an exhausted little one in her car seat, wrapped in a blanket, clutching the bandaged places on her arms where she hurt. A light dinner, a few new supplements, and our babe was tucked snuggly in to bed.
Relief and Return
That evening, around 11:00 PM I heard the whisper alarm, "SHE'S UP!". My husband and I had perfected this quiet alarm over the last two years because it gave us our only shot at getting our child back to sleep within a reasonable time, which for her was still 30-40 minutes. This alarm said that Amelia was not just stirring but up and on the move. One wrong sound or the slightest stimulation meant she could be awake for HOURS. My body knows this whisper alarm and I snapped in to action before I was even consciously aware. I turned off the lights closest to me while my husband hit the kitchen switches and the moved quickly to our daughter's side because he was closest. But then something completely unexpected happened.
Instead of running to her bedside to quiet her before she started yelling for me and waking her sister, my husband met her at the bedroom door as she walked sleepily past him. He froze and with her eyes half closed she made her way to the bathroom, did what needed to be done, and walked back to her bed where she got in bed, pulled up the covers and went immediately back to sleep. That hadn't happened in years. The day's exhaustion is probably what enabled her to sleep so well but nothing could explain what happened the next morning.
Real treatment would begin once test results were in, but in the meantime we knew we might see some changes as we started to boost her system the few supplements I mentioned above. It felt good to be able to do something, finally. We woke up that morning and got what we never expected, not in a million years. So much of a change that I was convinced it couldn't be from the supplements we had given her only 12 hours prior. As suddenly as symptoms had come and gone for years, these supplements worked in taking almost all of them away. THE. VERY. NEXT. DAY. AFTER. our appointment and her first supplements my daughter returned to me.
It has been a month since then and except for a few days when symptoms returned for reasons we now understand, there has been no clothing sensory, no signs of that fleeting OCD, and the agitation and emotional lability is all but gone. The remaining symptoms are mild. Still waking a few times a week our daughter can usually fall back to sleep and sleep until morning. A small degree of sensitivity about certain pieces of clothing remain but they are managed independently and not a problem anymore.
It has been a month and we sailed past another milestone today. We ended a ten-day break from school, winter vacation, with a beautiful return to our typical morning routine. For the last year and a half, return to school days were guaranteed to bring epic meltdowns from Monday straight through to Friday, even more intense than the usual. This morning was different. My daughter had a nice breakfast, chatted with me, got dressed, played nicely with her sister, and happily skipped out to the bus. I am stunned but starting to believe.
We are, at least at this point in time, one of the lucky ones. I am incredibly grateful that we didn't have to spiral down as far as so many suffering children have, and just as grateful that the first little treatment we tried has worked so miraculously. We meet with Dr. O tomorrow to review all those tests she ran and I am curious to see what they show and what other therapies or treatments she will recommend. We may have a long road ahead of us but what we have now is hope and direction and that is enough for now. And so we hold breath in anticipation of what is to come.
Dr. O was complete in her assessment, reviewing every medical detail of my pregnancy and the birth of our daughter. Explaining that the antibiotics I took during my pregnancy would have affected the flora in my daughter's gut, as would the antibiotics given to me during delivery, and all the courses she had as an infant for the many infections caught at daycare. "She will have a strong immune system." people consoled when every six weeks a new cold turned in to yet another raging sinus or ear infection. Oh how I wish that could have been, but in reality the opposite was true. For whatever reason, perhaps a predisposition from the beginning, our baby was not bolstered by all the illness but weakened by it. The antibiotics only served to complicate existing gut and immunity vulnerabilities.
Perhaps a flu shot at a time when our preschooler was sick and her immune system compromised, could have been the weight that tipped the scale. Maybe there was just one infection too many or a badly timed virus. That high fever she had at age three or four, followed by a rash and eventually peeling hands and feet could have been a case of undiagnosed strep. We will likely never know, but somewhere along the line things went wrong, the immune system was damaged, and illness set in, slowly building toxins in her system and causing inflammation in the brain.
Dr O ordered more blood work than I could have imagined. She drew the blood herself, softly reassuring my daughter (and me) that it would be over soon. As I held a pleading, scared child on my lap I wanted nothing more than to take the pain and fear away. It hurt. It took a long time and even longer when the first vein collapsed and the other arm had to be had. Two hours after we had arrived we departed with more information, some good theories of what was going on, and a very traumatized little girl.
I want her to remember the beautiful dogs that played with her, licking her face until she giggled out loud. I want her to remember the artwork she was asked to create to hang on the wall of fame. I want my daughter to remember the amazingly smart and kind doctor who understood exactly what we were going through because she had walked her son through the darkness of this illness when he was stricken years earlier. I want to erase the blood from her memory but I can only keep the other memories alive by remembering with her, the day we found someone who could help.
Our parting gifts looked simple enough; a therapeutic grade detoxification probiotic, yeast supplement called Saccharomyces Boulardii, and a bottle of Lysine which can be found in any pharmacy. Continue with her regular vitamins, the magnesium drink, and the Epson salt baths we had been doing for months. We packed up our bag, scooped up our daughter, and drove the 2-hour ride home with an exhausted little one in her car seat, wrapped in a blanket, clutching the bandaged places on her arms where she hurt. A light dinner, a few new supplements, and our babe was tucked snuggly in to bed.
Relief and Return
That evening, around 11:00 PM I heard the whisper alarm, "SHE'S UP!". My husband and I had perfected this quiet alarm over the last two years because it gave us our only shot at getting our child back to sleep within a reasonable time, which for her was still 30-40 minutes. This alarm said that Amelia was not just stirring but up and on the move. One wrong sound or the slightest stimulation meant she could be awake for HOURS. My body knows this whisper alarm and I snapped in to action before I was even consciously aware. I turned off the lights closest to me while my husband hit the kitchen switches and the moved quickly to our daughter's side because he was closest. But then something completely unexpected happened.
Instead of running to her bedside to quiet her before she started yelling for me and waking her sister, my husband met her at the bedroom door as she walked sleepily past him. He froze and with her eyes half closed she made her way to the bathroom, did what needed to be done, and walked back to her bed where she got in bed, pulled up the covers and went immediately back to sleep. That hadn't happened in years. The day's exhaustion is probably what enabled her to sleep so well but nothing could explain what happened the next morning.
Real treatment would begin once test results were in, but in the meantime we knew we might see some changes as we started to boost her system the few supplements I mentioned above. It felt good to be able to do something, finally. We woke up that morning and got what we never expected, not in a million years. So much of a change that I was convinced it couldn't be from the supplements we had given her only 12 hours prior. As suddenly as symptoms had come and gone for years, these supplements worked in taking almost all of them away. THE. VERY. NEXT. DAY. AFTER. our appointment and her first supplements my daughter returned to me.
It has been a month since then and except for a few days when symptoms returned for reasons we now understand, there has been no clothing sensory, no signs of that fleeting OCD, and the agitation and emotional lability is all but gone. The remaining symptoms are mild. Still waking a few times a week our daughter can usually fall back to sleep and sleep until morning. A small degree of sensitivity about certain pieces of clothing remain but they are managed independently and not a problem anymore.
It has been a month and we sailed past another milestone today. We ended a ten-day break from school, winter vacation, with a beautiful return to our typical morning routine. For the last year and a half, return to school days were guaranteed to bring epic meltdowns from Monday straight through to Friday, even more intense than the usual. This morning was different. My daughter had a nice breakfast, chatted with me, got dressed, played nicely with her sister, and happily skipped out to the bus. I am stunned but starting to believe.
We are, at least at this point in time, one of the lucky ones. I am incredibly grateful that we didn't have to spiral down as far as so many suffering children have, and just as grateful that the first little treatment we tried has worked so miraculously. We meet with Dr. O tomorrow to review all those tests she ran and I am curious to see what they show and what other therapies or treatments she will recommend. We may have a long road ahead of us but what we have now is hope and direction and that is enough for now. And so we hold breath in anticipation of what is to come.
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