tag:blogger.com,1999:blog-73792139227500517282024-03-05T15:21:55.822-08:00Hidden Illness: Our recovery from PANDAS/PANS/LymeA story of diagnosis and recovery from PANDAS "Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep" or PANS "Pediatric Acute-onset Neuropsychiatric Syndrome", and Lyme. Symptoms occur or worsen quite suddenly. Most children do not have all of these symptoms but a a combination of OCD, motor tics, vocal tics, sensory processing (spd), Tourette Syndrome, urinary symptoms, insomnia, emotional lability, agitation, fears, separation anxiety, rages, or food refusal.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-7379213922750051728.post-28591148900664789002021-11-05T06:54:00.007-07:002022-05-06T13:53:27.796-07:00Not So Lucky After All<p><b>Friday, November 5, 2021</b></p><p>Relapse is not officially what this would be called but the word fits the experience. Her mind and now her body, overcome. As a mother, helplessness is my undoing. I've kissed every boo-boo. I've tucked in every sleepyhead. I've hugged every fear away. I've stood between her and harm's way. I've swooped in and saved her from certain injury or death. I've calmed every worry, advised every problem, and made sure she has been okay. When she got sick so many years ago I figured it out when all the doctors had no clue. </p><p>This time, there has not been a damn thing I could do to stop this. I have watched for 2 months, as the life she knows slips away. Severe PANDAS in all her glory has finally taken her due. We are no longer one of the "lucky" ones. We are no longer a mild/moderate case. We are in deep and at times I can not breath. </p><p>I'm likely only writing because we've finally seen some signs of relief just this week. The relief comes from a dampening of symptoms, not from any real healing but it is welcome. I am busy lining up new specialists, making appointments, getting on wait-lists, scheduling additional testing, and working our way through a stepped up treatment plan one phase at a time. </p><p>The darkness has been black as night. I can't write about it yet but I imagine if you've lost someone who was your breath, your beating heart, the experience and depth of that grief would be similar. The difference is, I can see her form, I can touch her sometimes, and I can hope that she will be back. </p><p>What I can write about is how we are moving through this one and the clue lies in this very sentence; we. She says, "I, not we" and "my, not our." At 12 years old she's differentiating now and letting me know she needs to own this somehow. HER grades. HER homework. HER doctors. HER illness. HER fight. She's letting me know this is not my battle. She's not completely there yet because she still needs me and because she is sick, but there is a shift. </p><p>Differentiate. My struggle is and has from day one been letting go but at every single necessary step of the way I see and I do it. This will be one of the bigger letting go's but it will happen. I'll still fight like hell. I'll still be in it with her. But I'll be her teacher and she can now lead some. She chose part of her own treatment yesterday. Empowerment. </p><p>My little girl is not so little anymore and it will do her no good to pretend that this isn't what it is. So I'll help her fight. I'll help her to heal. I'll help her to choose. Whenever I can, I'll walk beside her or right behind her. There will be times when I need to lead but it is no longer all I will do. </p><p>She needs to find her own <b>strength</b>, <b>hope</b>, and <b>love</b>. </p><p><br /></p>Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-79131091166967540652021-11-05T05:20:00.004-07:002021-11-05T05:21:48.132-07:00Falling<p></p><div style="text-align: left;"><b>Friday, November 5, 2021</b></div><p></p><p><b></b></p><div class="separator" style="clear: both; text-align: center;"><b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAD2Id_QKEJ4xrkg2FtqRrdcFQPWqw-vPIsKX-e4uAE2j4FeQ6rzhco1WjMdoXG93Yv6tx31cGlIymBzcVGwFTDzMCVKCJU_2PTF4q8WnFd-mV_ySMeuzVxIrNkW05Tk08CPfO1Ov9wwU/s960/251920649_10227310241243360_2917457814706613645_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /><img border="0" data-original-height="556" data-original-width="960" height="231" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAD2Id_QKEJ4xrkg2FtqRrdcFQPWqw-vPIsKX-e4uAE2j4FeQ6rzhco1WjMdoXG93Yv6tx31cGlIymBzcVGwFTDzMCVKCJU_2PTF4q8WnFd-mV_ySMeuzVxIrNkW05Tk08CPfO1Ov9wwU/w400-h231/251920649_10227310241243360_2917457814706613645_n.jpg" width="400" /></a></b></div><p></p><p style="text-align: center;">Fall slipped in through summer's back door with no invitation. </p><p style="text-align: center;">A distracted host, I whispered hello. </p><p style="text-align: center;">And we all fell down.</p><p></p><div style="text-align: center;"><br /></div><br /><p></p>Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-75397903074625317772020-02-14T18:49:00.001-08:002020-10-09T06:10:50.615-07:00Gray<b>Monday, February 2, 2020</b><br />
<b><br /></b>Lots of gray. Happy, happy, side slammed by hysterics, worries, and a touch of ocd.<br />
<br />
Super Monday was not so super. The half-time show last night was a bust. Something happened and although I saw it bubbling for most of the day the eruption still caught me off guard (how the hell does that still happen?). I wasn't prepared for how bad it was and I wasn't prepared to help her - at least not for about 15 minutes. I tried to parent it out of her. Deny it. Consequence it out of her.<br />
<br />
Finally, my senses returned and I embraced my PANDAS PANS Mama role. I sat on the bed and opened my arms and she crashed in. Her tear streaked face looking up at me so helplessly, "Mommy I acted like a crazy person. I'm so ashamed."<br />
<br />
And I am gutted.<br />
<br />
"No honey. You had a really tough time and I didn't help you with it. I'm sorry. It's okay. You're okay. I love you."<br />
<br />
Honestly, THIS is what she has to carry? The weight on her shoulders must be crushing. ARGH! How can this be her reality? Fine one day, a mess the next.<br />
<br />
My god I'm so filled with anger. Shame overcomes me in those moments because I can't fix this. I have to figure something else out. This isn't working well enough for her. Surrounded by friends with colds and flu mist vaccines (live shedding vaccines) the vitamins are not enough for her. She needs something more.<br />
<br />
I'm just so angry. Sadness.<br />
<br />
Strength. Love. Hope. (sometimes you fake it til you make it)Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-40164547804530549802020-01-23T07:04:00.001-08:002020-02-15T15:38:14.339-08:00Bumping Along, Singing My Song<b>Thursday, January 23, 2020</b><br />
<b><br /></b>
I hate to write this post. I'm pissed off actually. She's been bumping along again since September (at least...I think...hard to remember). Multiple flare protocols, upping this, reducing that. Breathing a denial-ridden sigh of relief when she has a good couple of days. Swearing and trying to contain my anger and absolute frustration when it's back.<br />
<br />
This morning was scary. Clothes. Nothing felt right. In tears of frustration she looked at me helplessly. Yesterday a beautiful day at the mall. Normal. Mommy-daughter day, shopping and buying some new things. Comfy things. Happy things. Then - it's all bad. Bad. Bad. Bad.<br />
<br />
I can barely contain my rage. I am so tired of fighting this for her. So tired of watching her struggle. Filled with worry for what this is doing to her psyche...what it has already done. The shame. The brokenness of it all.<br />
<br />
Broken. That's what it feels like. Damaged and broken. Like myself. What to do. What to do. Today, I do not know.<br />
<br />
It could be worse.<br />
<br />
It was better. A year and a half of better. And now I scurry to try to catch up and get that "better" back.<br />
<br />
I think it's too late. That bus has left the station and we're sitting here with PANS. That son-of-a-bitch PANS.<br />
<br />
Embrace. Support. Love. Manage.<br />
<br />
This is life. The only one she's got. Do better Mama. Do better.<br />
<br />
Strength. Hope. Love. I'll pull her through.<br />
<br />
xoPandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-77235697553162002752019-05-14T17:04:00.000-07:002019-05-14T18:26:14.559-07:00I got nothin'<b>Tuesday, May 14, 2019</b><br />
<b><br /></b>
Nothing has come of any of it. She's great. She's a moody preteen who just turned ten but she's typical. The little scares never materialized. No flares. No symptoms. Just little bumps in the night that turn out to be nothing but shadows. Shadows of a living nightmare that even the brightest days can't drown out.<br />
<br />
So we are cruising. Cruising through 4th grade. Headed towards an amazing summer. Loving life and health. Talking about hormones, boys, and life lessons. Talking about how to cope with disappointments instead of OCD. Talking about being a contributing member of the family instead of trying to talk her down as she crouches terrified on her headboard.<br />
<br />
It's incredible. She's incredible.<br />
<br />
Strength. Hope. Love.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-67960477134111656882019-03-02T20:01:00.001-08:002019-03-02T20:01:36.527-08:00Something's Brewing<b>March 2, 2019</b><br />
<b><br /></b>
Well we've had a great run. I can't remember the last bad flare we've had. I found an old post from August that stated we had had a few great weeks so I know it's been at least that long. Now we're getting somewhere. <br />
<br />
I thought when things got better I would see it coming. Thought I'd know. Figured I'd be able to point to some new treatment or strategy and say, "Yes! This is what is going to make a difference. Found it!" and then I'd get to watch her health reveal itself in all it's glory. It wasn't at all that way.<br />
<br />
I only knew her health had improved when I looked back. As each month passed without a flare I began counting - 1 month, 2 months, 3 months, 4......five potato, six potato, can we get one more?<br /><br />Oh I'm NOT cocky though. No way. No one who has lived this life would dare. Oh in the beginning I was. Poor, naive, PANDAS PANS Mama. "Hey everyone! I can't believe all she needed was a simple probiotic! She's been perfectly healthy for weeks! Can you believe it? All this time and a little gut health made it all go away" Crash! Bang! Boom! And all the queens horses and all the queens women, couldn't put my child back together again. I probably fell off that wall a few times in all honesty. In fact, this may be the first time I've been humble and super quiet about it. Haven't even written many blog posts about it.<br />
<br />
So, this has been an unusual time. Quietly taking it day by day. Working through some rough spots because it hasn't all been sunshine and roses. We'll have a couple of nights here or there when fears and a touch of OCD come to play. A weekend here or there when she's super agitated and emotional. The first few times it happened I panicked and threw everything from my flare protocol at her. Each time she was better within a day or two.<br />
<br />
Only recently did I start letting her try to work through these bumps without too much intervention. Maybe just a little extra immune or allergy support.<br />
.<br />
.<br />
.<br />
Hmmmmm....I didn't see this coming.<br />
.<br />
.<br />
.<br />
I was going to write about taking our nutritional support program to the next level to get her over a little hump she seems to be stuck at. I've noticed she's been more unfocused, hyper, sensitive, and having some fears and minor little OCD stuff. I was thinking I needed to get her going with a little more methylation support but now....<br />
<br />
Oh crap! I haven't been giving her the whole flare protocol at the first sign of symptoms and NOW I'm seeing other stuff creeping in. Stupid. Stupid. Stupid. I did it again. Why do we keep trying to act like our kids have healthy functioning immune systems even in the face of growing symptoms.<br />
<br />
Strength. Hope. Love.<br />
<br />
p.s. don't get cocky<br />
<br />Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com2tag:blogger.com,1999:blog-7379213922750051728.post-30375373408852009172019-01-07T06:45:00.001-08:002019-01-07T06:53:41.796-08:00Look Away<b>Monday, January 7, 2019</b><br />
<b><br /></b>
<b><br /></b>
I'm not sure what to say but I know if I start typing it will come. We have had a relative state of calm since some time in early September. Regular days of getting dressed and out the door to school. No crying or screaming. No intrusive thoughts or fears. Just a 9-year-old girl and her family doing life.<br />
<br />
There have been days though. And a couple of nights. Fears surface and she pleads, "I don't want it to come back! What can we do? I don't want it to come back!" Panic moves in quickly and I open the cabinet, scanning, calculating symptoms and likely causes so the correct supplement can be administered. A day later calm returns and there is no flare.<br />
<br />
Three or four times this has happened. Once, it was two nights in a row and I was terrified but each time, things settle and we breath and we move and on and look forward. I consciously superficially forget. Block it out. Not now. We aren't there and I won't look. If we make eye contact it might rear it's ugly head so we turn away and look forward and keep moving. Quickly. Keep moving.<br />
<br />
This morning it happened. Reminds me that it also happened once or twice over the last couple of weeks. Hmmmm. Well, I guess the hyperactivity has been there for quite some time too but that is nothing compared to the something we usually have. But this morning, socks didn't feel right. Couldn't get out the door. This morning was a flashback - screaming, begging me not to leave her inside. I told her sister I'd play basketball with her while we waited for the bus. "Sophie's Chose" not quite but I can relate. Let my little one know that she gets left behind anytime and anywhere her sister says? Abandon my big girl in the house, frightened and alone as I turn my back? I played basketball...I think. But then I was inside helping to loosen a sneaker. Those were too tight. Bag was too heavy. Socks were awful. Oh and now at age 9-tween, it's all my fault. That's a nice new twist.<br />
<br />
So this morning I'm doing my calculations again. Front-end or back-end methylation? The B3 helps but maybe pushed something back to NOS or yeast or gluatamate or NRF2 or TH17. I don't really know what I'm talking about. I have my own issues cognitively. No long-term memory storage or at least no recall. It's almost as if I have to re-learn with every flare. Basics are easy. A+B=C. Excess ammonia + moly or l-cit = mop it up. Yeast overgrowth + difulcan + charcoal = relief. But maybe it's viral so we need more A, D, Zinc, C. Maybe it's histamine from a playdate with a friend and her cat. Some AS-Gold and bene might help.<br />
<br />
Have I ever written about how tired I am? I shouldn't complain because we've had an AMAZING run. I'm not going to complain because I'll probably be punished which means she'll be punished and our family will be broken again.<br />
<br />
Look forward. Don't stare it in the eyes. Back slowly away, no sudden movements. Quietly dust off a couple of sups. We're f.i.n.e. Just fine.<br />
<br />
Peace. Hope. Love. (sometimes there is no strength but it will come when we need it)Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-59168999070188824262018-05-25T06:30:00.000-07:002018-09-19T07:20:20.738-07:00The Hostage Crisis - 7 Days in May<b>Wednesday, May 16, 2018</b><br />
<b><br /></b>It happened again. My child's mind was taken hostage for a week without warning. She caught a cold and lost her right mind. Seven days and seven nights. All the symptoms of a serious mental illness. If you know my daughter you would have been shocked to peek through the window to our world that week. You would not have believed your eyes. If you don't know my daughter, you would have assumed she was a child living life with severe anxiety and Obsessive Compulsive Disorder. If you loved my daughter, your heart would have been torn to shreds. <br />
<br />
As a family, we are shredded but holding on to strings. Hoping to mend our hearts quickly before they are torn again. Hoping for a reprieve in between the hard stuff, to catch our breath, breath deeply, rest, and live life in the normal for just a little while.<br />
<br />
<b>Stealth Enemy</b><br />
After a persistent flare settled in from November to February, my daughter had been doing better but bumping along with some low level worry and mild sensory symptoms as her immune system fought off the onslaught of seasonal allergens. I kept a close eye, increased antihistamines, and waited for the allergies and symptoms to subside. BUMP...Bump...bump....little bump...progress. Not too bad.<br />
<br />
One week before Mother's Day, the floor dropped out from underneath us like that amusement park ride that leaves your stomach two stories above your heart. She had caught a cold a few days prior which included a lot of congestion and a cold sore. Within days her mild symptoms exploded in to debilitating compulsions that turned her world and ours, upside down. Suddenly wracked with the need to repeatedly wash her "sticky hands" that were not. Compelled to smooth her bed sheets to perfection, removing every wrinkle and aligning them so they lay only 1 foot from the bottom of her bed, no more. Forced by an enemy from within to get out of bed, multiple times, and fix every little thing in her room, through tears she cried out of pure exhaustion.<br />
<br />
<i><b>A PANS Story, Author OCD</b></i><br />
<i>It's story time my little dear, just lie down, I'll dry your tears. </i><br />
<i>UP! Up! up! Straighten up those books! </i><br />
<i>That's much better now, just don't look. </i><br />
<i>Lie down love and snuggle in, you've done well...</i><br />
<i> but I'll still win. </i><br />
<i><br /></i>
<i>Once upon a time. GET UP! That one's not right, it must be tight! </i><br />
<i>Get in bed that should be it, I might let you rest a bit. </i><br />
<i>One, two, three, you can't catch me, I'll make you climb the coconut tree!</i><br />
<i>UP and up and down again, align the figurines by ten. </i><br />
<i><br /></i>
<i>Now lie back down, it's all just right, </i><br />
<i>no, no, no, not tonight!</i><br />
<i>UP! to hide the messy shelves, </i><br />
<i>down, up, down, won't fix themselves!</i><br />
<i><br /></i>
<i>Clear the desk, the toys, the shoes!</i><br />
<i>Okay, I suppose that's enough for you</i><i>.</i><br />
<i>We've done so much together today, </i><br />
<i>Goodnight my friend, </i><br />
<i>tomorrow we'll play.<br /><br />by: OCD</i><br />
<i><br /></i>A perfectly happy and typical child is thrown in to the hell of medically induced mental illness, literally overnight. When this happens an experienced PANS mom instantly becomes "warrior" armed for battle and with ninja-like skills, begins administering treatment protocols. The last invasive most natural options are selected first because sometimes a few supplements help to balance the system and settled the flare. Precision focus on every nuance of behavior informs decisions and adjustments to the treatment plan are made. Help has to come quickly because every day, even every hour counts. A new symptom may appear at any moment; a symptom that those "other" PANS kids have but not us. (I wonder if other moms do that thing, that "them not us" thing. Comparing their child's symptoms to others in the groups, in order to reassure themselves that things really aren't that bad....at least not yet.)<br />
<br />
<b>The Power of Yet</b><br />
On the positive side of yet we have hope that our day will come. "She isn't better, yet." "She can't get dressed without extreme sensory trauma, yet." "She can't get a cold without losing her mind, yet." On the terrifying side of "yet", it's icy cold hands grab your heart, striking fear that one day your time will come. "She doesn't have motor tics, yet." "She isn't refusing to go to school, yet." "No one outside of our home sees her illness, yet." "She isn't refusing to eat and needing a feeding tube, yet." <br />
<br />
As always, life is a matter of perspective. You learn to live with the yet. The hope and the fear. The dream and the reality. Ying and yang. Dark and light. Day and night. Not yet.<br />
<br />
This time, the treatment protocols that had worked in the past, failed us. On day five I started to consider the antibiotic but held off. On day six I had run out of treatment options and was more terrified of what I was seeing than I had been in 2.5 years. One dose of antibiotics the night before Mother's Day didn't help with the next morning's routine. I can see it in the pictures. A mother, smiling in the bright sunlight, a daughter in each arm. One light. One dark. Not just in clothing but in expression and coloring and health. Second dose that morning and we wait. A lovely day with my mother and the trepidation of the bedtime routine begins as we drive home.<br />
<br />
Story time brought the greatest Mother's Day gift of them all, a child's sanity restored. "Mommy! The OCD is telling me to get up and fix that book and I don't have to do it!" My breath flows effortlessly for the first time in seven nights. Oxygen. "Once upon a time..." "Mommy! It's telling me to fix that toy too but I don't have to! eeeeee!" <br />
<br />
Beaming, happy, quiet mind. Lying with sheets askew, toys misaligned, and messy shelves a showin', my baby lay down her head and fell peacefully to sleep. I took a picture and it is not my imagination that you can see the difference that 24 hours had made. Two doses of azithromycin either worked by striking whatever infection was there, or more likely, worked to reduced TNF alfa and brought my daughter back to her self.<br />
<br />
<b>Lemons and Lemonade</b><br />
PANS is cruel. It shows up when least expected, rarely calls ahead, and doesn't leave even when you kick and scream. After years of struggling, we can't decide which is worse; the symptoms themselves or the not knowing. Not knowing when another flare will hit. Not knowing how bad it will get. Not knowing what flare treatment to try first. Not knowing if any of the treatments will work. Not knowing if this might be the one. The one that plunges her in to the deep dark nightmare of PANS that so many children can not seem to awaken from despite the best of the best medical care.<br />
<br />
For now we are grateful. In addition to the nightmare, PANS has also brought life lessons. Lessons in letting go and living each day to it's fullest. Enjoying the good days. Not holding back our joy, despite the reality that the other shoe will surely drop...and it's a big shoe. The bad days give us plenty of time to suffer so we've decided we won't go there until they are upon us. I'm not sure it's the PANS that has taught me this, as much as it my daughter has. Her memory is short for pain and suffering. She lives in the moment like no one I've ever seen can.<br />
<br />
<b>Answers</b><br />
<span style="background-color: white;">As I continue to search for clues as to what lies beneath the instability of her immune system, my hope is that one day we will put PANS behind us. I dig my nails in to the hope of forgetting, the hope of moving on, even as I know full well that PANS will always be with us. As it silently slips in and out of the recesses of our memory long after the illness itself is gone, the scars of PANS will remain on our hearts and in our souls forever. One can't live through a hell like this and not be changed. The sorrow and weight of that reality can be suffocating to a mother who only wanted to give her children the very best start in life, the most happiest of childhoods, and the most loveliest of memories.<br /><br />Still, there can be joy, there can be strength, there can be hope, there can be love. We haven't healed her...yet. </span><br />
<span style="background-color: white;"><br /></span>
<span style="background-color: white;">Strength. Hope. Love. PANS. </span>Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-10856447502929050932018-05-03T18:02:00.002-07:002018-05-03T18:02:53.672-07:00Wishes<b>Thursday, May 2, 2018</b><br />
<b><br /></b>
The moments that catch your heart off guard. "The Wishing Wall" in my daughter's classroom. We were flitting from place to place during Open House tonight, seeing her classroom and all of her work. A happy, carefree evening until this hit me like a punch in the gut. School has been the place she goes to forget. To be "normal". She fits in. We're lucky for that. This year has been different though. She's told a few friends about PANS. She chose it as the topic when she had to write a book earlier this year. And now, it's the first thing on her wish list. It's showing. It's on her mind.<br />
<br />
Strangely, for me, seeing this on that wall with all the other 9yo wishes made it more real to me. Even after all these years it's still sinking in.<br />
<br />
Strength. Love. Hope.<br />
<br />
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<br />Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-47028370763124817842018-05-03T06:19:00.002-07:002018-05-03T06:36:48.220-07:00Springtime Flowers<b>Thursday, May 3, 2018</b><br />
<b><br /></b>
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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Strength. Hope. Love. Always.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-82781577767638309822018-02-25T22:00:00.000-08:002018-03-28T18:18:13.833-07:00Remember this<div>
<b>Sunday, February 26, 2018</b></div>
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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. <span style="background-color: transparent; color: black; display: inline; float: none; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Tonight I popped back in after a minute just to make sure - and she was okay. </span>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.</div>
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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. </div>
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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. </div>
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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. </div>
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Strength. Hope. Love.</div>
Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-53804221101320834742018-01-08T19:28:00.001-08:002018-01-08T19:28:38.881-08:00Precious Calm<b>Monday, January 8, 2018</b><br />
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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.<br />
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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.<br />
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Strength. Love. Hope.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-57327023539703773282017-12-27T07:32:00.002-08:002017-12-27T07:36:28.541-08:00and we all fall down<b>Wednesday, December 27, 2017</b><br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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?<br />
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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.<br />
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We all fall down...rest, recuperate, recover. Such is life.<br />
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Strength. Hope. Love.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-73603462735665203632017-11-14T18:42:00.001-08:002018-01-16T20:47:28.043-08:00A Night to Remember<b>Monday, October 30, 2017</b><br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<time class="_3oh-" style="background-color: white;"><i>09/15/2016 10:39PM</i></time></h4>
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<span style="background-color: white; font-family: "helvetica neue" , "segoe ui" , "helvetica" , "arial" , sans-serif; font-size: 14px; white-space: pre-wrap;"><i>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.</i></span></div>
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<span style="background-color: white;"><i>Later</i></span><br />
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<span style="background-color: white; font-family: "helvetica neue" , "segoe ui" , "helvetica" , "arial" , sans-serif; font-size: 14px; white-space: pre-wrap;"><i>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.</i></span></div>
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<span style="background-color: white;"><i><br /></i></span>
<span style="background-color: white;"><i>Later</i></span><br />
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<span style="background-color: white; font-family: "helvetica neue" , "segoe ui" , "helvetica" , "arial" , sans-serif; font-size: 14px; white-space: pre-wrap;"><i>Now she's crying. I can't help her and it's killing me</i></span></div>
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<span style="font-family: "helvetica neue" , "segoe ui" , "helvetica" , "arial" , sans-serif; font-size: 14px; white-space: pre-wrap;"><i>Later</i></span></div>
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<span style="background-color: white;"><i><span style="font-family: "helvetica neue" , "segoe ui" , "helvetica" , "arial" , sans-serif; font-size: 14px; white-space: pre-wrap;">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.</span></i></span></div>
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<span style="background-color: white;"><i><br /></i></span>
<span style="background-color: white;"><i>Later</i></span><br />
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<span style="background-color: white; font-family: "helvetica neue" , "segoe ui" , "helvetica" , "arial" , sans-serif;"><i><span style="font-size: 14px; white-space: pre-wrap;">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.</span></i></span></div>
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<span style="background-color: white;"><i><br /></i></span>
<span style="background-color: white;"><i>Later</i></span><br />
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<span style="background-color: white; font-family: "helvetica neue" , "segoe ui" , "helvetica" , "arial" , sans-serif; font-size: 14px; white-space: pre-wrap;"><i>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></span></div>
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<time class="_3oh-" style="background-color: white;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>09/15/2016 9:24AM</i></span></time></h4>
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<span style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>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. </i></span></span></div>
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<i>Later</i></div>
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<span style="background-color: white; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i><span style="font-size: 14px; white-space: pre-wrap;"><br /></span></i></span></div>
<span style="background-color: white; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>
<span style="font-size: 14px; white-space: pre-wrap;"></span></i></span>
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<span style="background-color: white; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i><span style="font-size: 14px; white-space: pre-wrap;">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. </span></i></span></div>
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Thanks so much for being there. <img alt="❤" class="_1ift _2560 img" src="https://www.facebook.com/images/emoji.php/v9/zf3/1.5/16/2764.png" style="border: 0px; display: inline-block; height: 16px; margin: 0px 1px; pointer-events: none; vertical-align: middle; width: 16px;" /></div>
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******************************************************************</div>
</span></i></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: #0084ff; color: white; font-size: 14px; white-space: pre-wrap;"><br /></span></span>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.<br />
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Strength. Hope. Love.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-72171042145891573822017-09-20T19:11:00.001-07:002017-10-30T06:49:36.727-07:00Freedoms Rediscovered<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
<b>Wednesday, September 20, 2017 </b></div>
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<span style="font-family: "times" , "times new roman" , serif;">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.</span></div>
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<span style="font-family: "times" , "times new roman" , serif;">This has been a long time coming. I wasn't sure it would ever happen.</span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><span style="background-color: white;">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 </span><span class="text_exposed_show" style="display: inline;">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.<br /><br />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.<br /><br />Strength. Hope. Love. </span></span></div>
Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-85960992400564015522017-09-05T10:36:00.001-07:002017-10-10T06:04:27.769-07:00A New Chapter<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
<span style="font-size: 12pt;"><b>Sunday, September 3rd, 2017 </b></span><br />
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<span style="font-size: 12pt;">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.</span></div>
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<span style="font-size: 12pt;">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". </span></div>
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<span style="font-size: 12pt;">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. 💕</span></div>
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<span style="font-size: 12pt;">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.</span></div>
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Hope. Strength. Love.</div>
Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-58305428259010155692017-06-23T08:24:00.002-07:002017-07-31T07:03:50.972-07:00Time Warp<b>Friday June 23, 2017</b><br />
<b><br /></b>
I don't know how long it's been. I'm not sure if it's been weeks or a month. I can't even go back and look at my group posts to check because I don't think I have bothered to post much (at least I don't think I have). It's all a blur. The pit in our stomach when it's time to get dressed is back. Her fears of being alone in a room, even her own, grind her independence to dust. "Mommy WHY is it coming back?! I don't want to feel like this!" I don't know exactly how long it's been back, but it's here.<br />
<br />
We are bumping along. At eight-years-old there is more capability to reason so we are able to process her emotions a little better than before. Listening to what it feels like to have her body betray her again is crushing but it is something I can do for her. At times it is all I can do and the most difficult thing to do. To listen without trying to help her; no advice, no suggestions, no directions. Just quietly hearing her and seeing her and really being in the moment with her. Sometimes it is the only thing I can do.<br />
<br />
We are all doing much better in our actions if not in our hearts. There is a resolve that has moved in which is at once a welcome calm and a frightening realization that this may be our "normal". Up and down. Peace and torment. Healthy and sick.<br />
<br />
What is it this time? She either has a cold or allergies and either one could be causing symptoms. We are trying different OTC allergy meds with no luck so far. A new nasal spray will be here tomorrow which has some promising results with other kids like this. One other lyme herbal is coming and we will hope something gets us back to healthy.<br />
<br />
I am nearing the end of my hope that herbals and supplements might be the answer. They have helped and we've made tremendous progress in pulling out of the horrid flares we fought for the last year, but I want MORE.<br />
<br />
I want my daughter to be able to wear whatever she wants to wear. She doesn't have to like how jeans feel but she should be able to wear anything she WANTS to wear. A comfy pair of shorts should not produce so much trauma. I loose nightgown shouldn't be too overwhelming to put on. So we'll try a few more ideas, wait to see if symptoms subside as this head cold or allergy attack passes, we are trying some behavioral therapy techniques. I've set a date in my mind and if we have not leveled out again by then it may be time to revisit antibiotics.<br />
<br />
Progress is wonderful but we need consistency. We need to feel secure in knowing that we won't be thrown in to another horrifying flare without warning. When they start we never know how bad it will get or how long it will last. There is no magic ball. We just hold our breath and I throw what I can at it and hope it sticks. Spaghetti at the wall, as one of my PANDAS/PANS/LYME mom friends tells me. We aren't better "yet" but we will get there. The moms who walk this path with me are in my head - they get free rent up there, coaching me and speaking words of wisdom from the experience they too wish they never had.<br />
<br />
Our hearts are not broken today - we refuse. Today is our first lazy-summer-morning, when we get to veg out all morning long. We need the break. We are warriors, she and I and her little sister, fighting different battlefronts of the same war. The three of us are talking about this journey, exploring the experience, and making decisions about how we handle the rough spots. These are two amazingly strong little girls for all they've been through. I am one incredibly grateful mommy. I am also one incredibly stubborn mommy and I will not stop.<br />
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Strength. Love. Hope.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-90344721113023372162017-04-19T11:44:00.001-07:002017-07-31T07:17:25.934-07:00Hope Springs Eternal<b>Wednesday, April 19, 2017</b><br />
<br />
We have lift-off! The last two weeks have been a period of steady progress and my heart is full. I made some big changes to our treatment plan and something is working. She has color in her cheeks, her eyes are sparkly, she's happier, tantrums don't last forever, she's gotten dressed by herself for several days now! I am so happy I want to shout from the rooftop! And once again, I am reminded that parenting healthy children is infinitely easier than parenting sick children.<br />
<br />
I stopped a lot of supplements and two of her three prescriptions, removing one thing at a time and watching for negative reactions. There were no improvements but nothing got worse either. I added a b complex supplement at a very low dose, and some other supplements and therapies. I also started managing flaring symptoms with a new protocol which worked beautifully against agitation and anxiety. After a week or so I was able to stop the flare protocol and she's been great!<br />
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I have been around long enough to know that this may be a short-lived phase, but I have also learned a lot about PANS, the immune system, exotoxicity, and the inflammation process in the body. I feel better armed to handle future flares.<br />
<br />
I'm going to just throw caution to the wind and let myself be excited. I'm going to revel in the knowledge that I did something to help my daughter. I'm going to take advantage of this opportunity to breath, relax, and enrich our lives. Focus on enjoying the simple things again and appreciate that we aren't living in a constant state of being on guard. <br />
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Strenth. Love. Hope. Resilience. NEVER give up because the end game is priceless. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-72712002205517765922017-04-19T11:30:00.004-07:002017-09-05T19:49:39.603-07:00No Catchy Name...just more of the same<b><u>Saturday, March 11, 2017</u></b><br />
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I don't have much to report. We are still struggling. It is not the worst flare because at least she is...wait, never mind. I've learned not to jinx myself so I don't dare say it. But it is not the worst.<br />
<br />
The mornings are just awful and as bad as I remember they were in those early months of crisis when she was five years old. I am trying so hard but I can't help her. I've grown more stressed and reactive. I keep picking myself up and creating all this optimism - I can't help myself - it's what I do. I think, "This afternoon will be different. We will just relax and hang out, have pizza and watch a movie", and before I know it all hell has broken loose. I pick myself up and then come crashing down. Hard. My daughter is screaming because I've asked her to take a break from something, and after 20 minutes of being really calm and patient I am suddenly not. I seem to have a lower level of tolerance and I am crying more.<br />
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I am so tired. I am so sad. I feel like this is defining our life and our family and their childhood. Her younger sister just watches all of this go on day after day. After a fun morning of playing outside before school it is time to go and my kindergartner is all buckled in when it starts. "MY PART DOESN'T FEEL RIGHT!" and we're off but standing still. She's been fixating on the part in her hair lately. An OCD fit begins and I feel helpless and hopeless. I sit, emotionless, knowing nothing I do or say will do anything but make it worse. "YOU HAVE TO FIX IT! FIX MY HAIR...NOW!!!" If I try to fix it, the rage will go on, get louder, and it may never ever end and we will be stuck in this car with the screaming for the REST OF OUR LIVES. That's how it feels in that very moment. So I either drive to school with her screaming and risk that she won't get out of the car when we get there, or I bring them inside and hope the change of scenery helps me to snap her out of it. We have only 10 minutes wiggle room to get to school on time. We unbuckle, she screams at me, we head inside, I close the door to the outside world again. What is my little kindergartner feeling at that moment; all ready to go to school and out of the blue we are in the midst of chaos, again. It breaks my heart in to a million pieces.<br />
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Very quickly I realize this isn't going to be over in 10 minutes, I can't get them to school on time, by little one starts crying because she just wanted to go to school, and I can not seem to hold myself together. I begin to unravel. I go to my room to focus and get myself pulled together. Pulled together for my kindergartner, pulled together enough to walk in to that school, and pulled together enough to try again and calm her down.<br />
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What is going through my little ones head now? Minutes ago, sitting in her car seat, happy; her shining eyes and that smile are etched in to my memory by the familiar look of fear that replaced it in an unforeseeable instant. To be driven because it is a fun change from taking the bus. This happy morning has turned in to a disaster and now instead of being at school before the buses arrive, she'll be 30 minutes late. Instead of chatting on our way to school she has to listen to her sister screaming and crying and carrying on. I can not seem to hold myself together for the pain and fury of it all. I quiet my voice and tell her it will be okay; that her sister will feel better soon, and that I will not yell. I'm sorry she has to experience this every day.<br />
<br />
When they play they yell at each other now. Little arguments become screams - echoing the words shouted during meltdowns and ripping my heart to pieces. They are replaying it all, probably in an effort to work it all out. I want to do so so so much better for them. I want to help them cope and manage all these emotions. I want it so bad I can taste it and feel it but there are days I just don't have anything left to give. I sit and listen to their play and I can not go to them. Every failure on my part depletes my resolve and strips away just a little bit of my optimism. I hope this flare passes and gives us all some relief in time for me to regroup. I want to set a good example for how to handle big emotions and frustrations. I try so hard. Every single day I wake up and go through my plan in my head. Every night I vow to do better the next day. And in between I have wonderful moments and horrible moments and the beat goes on.<br />
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This is harder than anything I have ever endured in my life. This feeling that I am absolutely letting my children down. I can not make her better. I can not fix this. I can not heal her. Failing them. Failing myself. Just failing. What my daughter is going through is horrid. It is a monster that is taking over our lives and I hate it. i have to figure something out. figure out how to keep myself whole and keep my children whole. i have to do better. tomorrow i have to do better.<br />
<br />
strength love hopeUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-44439775517012499572017-02-16T06:38:00.002-08:002017-11-15T06:30:56.278-08:00I could make teddy bear pancakes<b>February 16, 2017</b><br />
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We leave in a couple of hours to see Dr O for more tests and an IV medication to detoxify her system in the hopes that it reduces inflammation and provides healing. I want to test for everything we can this time before our insurance deductible resets in a few weeks. Heavy metals, mold, vitamins, minerals, and the normal ANA, CBC, and CMP.<br />
<br />
This morning I let her stay home from school; I would have picked her up 2 hours in to her school day anyway and she can use the rest from this rough week. I also let her stay home because I wanted to give just one peaceful morning to her little sister. My kindergartner woke up before me, got dressed, and was making her bed when I came to her room. She is a child of this illness too but in a different way than her sister. She tries to be extra good, extra sweet, extra loving, to balance out all the yuck that this illness brings to her world. The screaming, the unpredictability, the mommy-time she's robbed of because her sister's needs must be met as they arise, no matter when or where, or else. Waiting on the sidelines so much of the time, I wonder if she is starving for normalcy, calm, attention. What will the story of her childhood be? My energy is focused so much on the story of her sister that I haven't thought about her story so much. One day she will write her story and so as her mother I ask myself, what can I do now to co-author it? <br />
<br />
I made chocolate chip pancakes for her in the shape of a teddy bear with a chocolate chip face. This is something I can do. It's not the first time I've done cute little mommy-things but it is the first in a long time and it doesn't ever happen on a school morning. Mornings are too hard. I cut up some fruit too. I even wrote a love note and slipped it in her school lunch bag. A beautiful morning with my little girl who is growing up by leaps and bounds, too quickly. We had a beautiful morning and the bitter-sweetness caught in my throat and choked me as she waved goodbye through the yellow bus window. This is as it should be.<br />
<br />
Her sister played, staying in just her bathrobe so she didn't have to endure the torture of putting clothes on her inflamed body. It's been a very rough week. Sensory, agitation, emotional. Insomnia has been horrid as she's been unable to fall asleep until 10, 11, or 12 o'clock each night. Hyper, manic, agitated. Last night she cried as we began her math homework and I saw for the first time her brain wasn't working right. She struggled with something she does all the time - something that always comes easy to her. <br />
<br />
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"WHY is this so hard?! Why am I so agitated?! I don't want to be like this! </div>
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None of the other 21 kids in my class have to have needles in their arms for bloodwork! </div>
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No one else has this and I don't want to be different!"</div>
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Homework was hard and bedtime last night was a challenge but she was asleep by 9:10, likely because she was completely exhausted from the previous nights' sleeplessness. This morning I haven't asked her to do anything but take her lyme herbal water. She's on the Kindle and I'm here doing my therapy writing. I just wanted a peaceful morning, for her sister, for her, and for me. But mostly, for her sister.<br />
<br />
My kindergartner and I walked outside to wait for the bus in our front yard. She wore her mixed up outfit that she chose by herself and her self-made ponytail was messily tucked in to her furry hood. It is a sunny, brisk, winter day. Bright blue sky, crisp air, little whispy white puffs sailing by. We laughed about how she could almost stand on top of the foot of snow that had hardened along our driveway. We talked about the mommy-day I would set for her in the coming weeks when just she and I would play hookie from school and go out to lunch. I gave her a bigger hug than usual when the bus pulled up and yelled an extra "I love you" as she rounded the front to get on. She waved as the bus pulled away, making sure to see me. My sweet. I won't be here when she gets home from school and I know that bothers her. It bothers me too. That I am not here for her as I would be without PANS/LYME ruling our world. Thank the universe for Grandma's.<br />
<br />
I'm going to make a list of all the things I don't do because of PANS/LYME and then I'm going to start doing them. I'm going to make teddy bear pancakes on school mornings, cut up fresh fruit, talk to my kindergartner as we wait for the bus, and write love notes for lunch boxes. I'm going to make a big list and do everything that I might wish I had done looking back five years from now. If I have to do it in the middle of the night I will. If I can only do it a couple of times a month on days that aren't so hard I will. I will not let this illness take their childhood from me. In 5 years what would I say to myself? "ENJOY every moment you can. FIND them. STEAL them. MAKE them. Don't let them be robbed of you. They are YOUR moments. They are THEIR moments. LIVE them, no matter what." <br />
<br />
Got it.<br />
<br />
Strength. Love. Hope.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-6585529204271458032017-02-10T09:15:00.000-08:002017-11-15T06:22:24.606-08:00If only<b>February 10, 2017</b><br />
<b><br /></b>I rocked and sang a sweet lullaby as she nursed and drifted off to sleep. Rain sounds gently calming and the twinkling star lights fading red, blue, and green on the walls of her her nursery room, I let the busyness of our day slip away. I thought I heard a sound break through the pittering rain. Rocking more slowly, an ear turned towards the mostly closed door. Yes, there it is again. My 3-year-old's voice, piercing the calm as she pleads with her daddy about some issue with her own little bedtime routine. Waiting. Listening. Yes something is up. I gently laid little sis down on her bed and quickly slipped away. What could this be? So unusual. Their routine is counted upon every single night. I wonder, as I turn to follow the banister that lead to her bedroom, what could be wrong.<br />
<br />
It was the first of what would become years of struggle. Our beautiful three-year-old daughter suddenly fighting her bedtime routine was not just unusual, it was unheard of. Every night since she was a baby had been a sweet ending of our day. My husband and I used to take turns putting her to bed and sometimes I'd negotiate to get two days in a row. It was that good. Consistent, sweet, calming, our special time. Read stories in the rocking chair then settle her in to bed. Sing her special lullaby twice, hum it a few more times, kiss her goodnight and watch her snuggle in. One more kiss from the door, "I love you", and all was right with the world. <br />
<br />
My husband and I used to laugh when we'd hear her little footsteps quietly patter across the floor, we'd look up at the ceiling as if we could see what she was doing. She always settled down quickly though. Such a good little one. During my last check of the night I'd often call my husband in to see what the activity had been. One night she lay on a sliver of bed that was not covered with "friends", wearing a tutu over her jammies, a pink cowgirl hat by her head, her new stick-horse next to her. What I wouldn't give to have one of those nights back. She always loved her special goodnight time with mom or dad and felt safe in her crib or bed. It is hard now, to remember.<br />
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Suddenly, it changed. Night after night without warning. Happy, sleepy, cuddly, stories. Tucking in and lullabies. The light turned off and up she would sit, proclaiming that she was NOT ready to go to sleep. I tried my up-until-this-point-highly-effective style of rational parenting and boundary setting. "This is not what we do at bedtime. At bedtime, you are in your bed, Mommy and Daddy tuck you in, and you lie down to rest. This is what we do. This is not a choice." It was as if my words simply bounced off of some invisible shield that was holding her hostage; I could not reach her. Screaming and crying, sitting on her pillow or standing in the far corner of her bed she bellowed that she was not tired and was not ready to go to sleep yet. We had never experienced this level of defiance. We didn't understand it. Couldn't make any sense of it.<br />
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It was a few days in to this new bedtime refusal, during another one of my very reasonable expectation setting discussions, that I realized there was something more to this than a preschooler testing her boundaries. As she argued her point, solidly dug in and unmoving, I saw my words had no sound in her ears. If she were simply testing her boundaries my steadfastness would have weakened her resolve but she was not with us. There was something about her that wasn't right. I stopped talking, sat on her bed, opened my arms. In she crashed. I held her to my chest, rocking her gently. After a few minutes I softly asked what was wrong. In her little fragile voice, I heard the words that broke my mommy heart for the first time in my parenting life.<br />
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"Mommy, I don't want you to get old. You will die and leave me and I don't want to </div>
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be here without you. Mommy I will miss you and I don't want you to die!" </div>
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She sobbed and sobbed and I sat stunned for a half-second-hour. Oh my god. Scooping her up in my arms I lied to stop her hurt. "Honey, I'm not going to die. I'm right here and I'm always going to be here. What made you think of that?" She was not comforted. <br />
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"But when you are old you are going to die right? And I don't want to be here </div>
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without you. Mommy when you die I want to die with you." </div>
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<span style="color: #0b5394;">Shattered</span>.</div>
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I talked and talked and lied our way out of this conversation. I would not die until she was very old. Maybe by then there would be medicine so none of us had to die. Please don't think of it my love. I am your mommy and I will always be here with you. I held her tight and from that night on one of us has sat with her until she falls asleep. That was then. This is now. Three nights ago, as I sat with her for what ended up being 2 hours until she fell asleep, I felt her bed shake just a bit. "Are you okay, honey?" In a split-second this almost 8-year-old was in my arms crying, "I'm having bad thoughts Mommy." It took her several attempts to explain, because I couldn't understand through her sobs. "I don't want to lose you. I don't want you to die." How many times will she have to endure this pain? I so badly want to take her pain away but I can not. I am not able to fix this. All I can do is try to use this illness to make her stronger, but I can not fix this.<br />
<br />
It is worse when she is sicker, and better when she is more well. During the rough times she wakes multiple times a night. She isn't fighting sleep when she wakes in the middle of the night; it just won't come to her and she doesn't want to be alone. If we stay with her she lies quietly, content to just have us there while she rests. It's been like this since that first night when she was three years old. In those early months we thought sleeping with her would reinforce the behavior but we had no choice. We were beat. We needed sleep. We couldn't get up multiple times a night, sit with her for 45 minutes, and then be woken up again less than an hour later. I didn't know much back then but I knew something wasn't right. A child should not have this type of insomnia. So started our calls to the pediatrician, trials of melatonin, reward systems, and calming techniques. And so started our journey to PANS and Lyme.<br />
<br />
Gone was our carefree child who loved to snuggle into her bed and tiptoe around in the dark when we weren't looking. Gone was our brave little girl who used to get up and use the bathroom in the middle of the night and tuck herself back in to bed without even asking for us. Gone was a part of her childhood that we would never get back. It was only the beginning. If only I had known then what I know now maybe I could have stopped the onslaught. More fears would come. More anxiety. More physical symptoms; skin-on-fire-sensory, insomnia, urinary issues, lack of appetite. Suffering and more suffering.<br />
<br />
I wracked my brain to connect all of this behavior to something. I googled, talked, chatted, posted, libraried, researched, and tried every tip I was given. Only later would I recognize this sudden change as the "sudden onset" of a horrid medical condition. If only I had known then what I know now. Damn it. I could have DONE something then.<br />
<br />
If I could have one wish, it might be to go back to that first night, knowing what I know now. Or maybe it would be back to her first vaccination, her first ear infection, her first breath. Oh if I could give her breast milk to provide her immune system with healing from that first moment. If I could be more judicious with vaccinations and provide detoxification support after every one. I'd skip the flu shots, give her probiotics every day, and make sure she had quality vitamins. I'd go back to that night and hold her and let her sleep in my arms. The next morning I'd get her started on the herbal antibiotics and antivirals. I'd do all kinds of things to stop this illness form spiraling out of control and hijacking her childhood.<br />
<br />
I don't live with regret but there is so much I would do differently. The only useful thing about regret is to recognize it and make sure you don't repeat the thing that brought it to life. What would my five-years-from-now self, say to me? What advice would I give me? What would I tell myself to do now instead of waiting. I couldn't help her then but I can help her now. I have to be able to help her.<br />
<br />
Strength. Love. Hope.<br />
<br />
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<br />Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-89796677465106475672017-02-10T08:24:00.002-08:002017-09-05T19:31:15.985-07:00Up and down and round and round<b>February 8, 2017</b><br />
<b><br /></b>
We are in our third month of herbal lyme treatment and the ups and downs keep coming. A few weeks ago it started up again - those horrible symptoms. Armed with some new tools of attack I think we have been able to keep things at bay. Maybe.<br />
<br />
She is up to multiple supplements in the morning and that in and of itself is taking it's toll. I hate to take my vitamins so I can imagine what it feels like to a seven-year-old little girl to take so many. I was hard on her this morning. I just wanted her to take her pills and it had been 20 minutes of fiddling with them and complaining. I tried empathy. It's time to brush teeth and hair. I tried encouragement. We only have 10 more minutes until the bus gets here. I tried the threat of consequence. It's TIME! I finally took them away and told her to go out to the bus. That is the greatest threat of all because she fears what will happen if she doesn't take them. Running around me she grabbed them from the counter and began. She fears the crushing sensory symptoms that may escalate. She is terrified of the scary thoughts that could come crashing in to her brain without invite, no way to push them out. She hates the insomnia that keeps her awake for hours and hours because it usually gets the better of her and then of me and the crying and yelling ensues.<br />
<br />
How did this happen? Why? I don't often go there. I'm always looking forward, focused on what to do next. We're trying to get b vitamins balanced, adding minerals, and lots of anti-inflammatory and liver-detox support. I think it's helping but it's a lot to take - literally a lot of pills to take. After a morning like today's, I reassess to see if I can safely remove a couple of pills. Just to ease the burden on this little girl.<br />
<br />
Then again, we are lucky right? It could be worse. At least she is "healthy" and not fighting something worse. So maybe she needs to suck it up and take eleven. Big deal, right? At least we can fight and there is hope. Some kids have so little hope. Some kids are fighting something that is ultimately going to win. She will win this battle so the focus needs to be on sustaining her as we go. At least she is home and comfortable and able to go to school and enjoy good friendships. She is learning and playing as she should be. It's just this other stuff she's got to handle. And there it is. Perspective. Never takes me too long.<br />
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So how can I better sustain her and hold her up? How can I strengthen her and her resolve? I tell her she is strong and brave and conquering it all. I think she believes me. Most of the time. When she's not just too damn tired of it all.<br />
<br />
Me too. I'll do better.<br />
<br />
Strength. Love. Hope.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-35075855663134698922016-12-09T19:49:00.001-08:002017-02-10T10:52:19.165-08:00Now We Know<b>Friday, December 9, 2016</b><br />
<b><br /></b>How the hell did she get Lyme disease?! Lyme and at least three other co-infections that typically come with the territory including bartonella, babesia, and that one that starts with "echl". After eleven months of not knowing what was triggering her flares perhaps we have found something. Lyme and PANS are not distant cousins - they tend to run together like closest siblings or the best of friends. These are the only infection we've ever found. Could this be the answer?<br />
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My feelings are of course all mixed up. Glad to know there is something to treat but worried because this thing is not easy to treat. The more I learn the more I respect and fear these bugs, parasites, stealthy invaders. It's pure science fiction, people. They are shape-shifters these lymie things, evading detection by changing form. They are body snatchers, throwing their dna in to a cell to hide and wait, sometimes years, until the coast is clear and the environment friendly they come out to wreak havoc again. They are opportunists, taking advantage of damaged immune systems, weakened health, finding places to set up camp, signaling to each other , coordinating, and building communication and supply pathways. I kid you not. Sci-fi-gone-real.<br />
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I feel validated that we have finally found something. We've been shooting in the dark for 11 months and now have something at which to aim. Answers. Now we know. We started an herbal protocol three days ago because the antibiotics required to fight these infections would hurt her more. This treatment plan is slow and not-so-steady as it could take 6-9 months to work and the ups and downs will persist as we travel. We will hold steady and hope the relief she's received these last few weeks continues and expands. Driving with blinders on we don't know what is just around the corner so we're enjoying the view from here.<br />
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Hope. Strength. Love.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-28720970998990183402016-11-22T05:44:00.002-08:002017-02-10T10:48:39.377-08:00Big News<b>Monday, November 21, 2016</b><br />
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Bartonella. More results coming next week.Pandas Pans Mamahttp://www.blogger.com/profile/00219034125545732014noreply@blogger.com0tag:blogger.com,1999:blog-7379213922750051728.post-56116222486806643252016-11-17T12:08:00.000-08:002017-02-10T10:48:19.567-08:00Grief<b>Thursday, November 17, 2016</b><br />
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(a post I wrote in one of my PANDAS/PANS support groups last night)<br />
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Grief. It has crept out of the recesses of my mind where memories of her childhood have been quietly packed away. It's been weeks of "relative" calm since we got her most horrid flare under control. But it just keeps taunting us, the OCD, the sensory, the indecision and agitation.<br />
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Days of remarkable recovery when she is just a typical 7yo child and my heart overflows. We have figured it out, it's okay now. It's going to be okay. I just watch her and am so filled with gratitude. Then, that moment of recognition when I see a glimpse of it return. A chair that isn't quite straight, couch pillows haunting the periphery of her vision that must be removed immediately, and the agonizingly painful process of trying to get her dressed in the morning because she can't decide which outfit to wear and because non of her clothes feel good on her body.<br />
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The photos of years past, when it was all beginning and I had no idea. This silent enemy was taking hold but I thought she was just going through something, just a sensitive child. That 3yo photo we just found...that dress was the only one she could wear, the crocks bc nothing felt good on her feet, and the braid in her hair....I remember that braid because I was anxiously making it as loose as possible so she wouldn't cry and rip it out. I just wanted her to be a happy, healthy little girl on her birthday.<br />
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Tonight she had symptoms again. Not severe, but enough to create some stress in both of us. "I'm tired of being different Mommy. (Starts to cry and I pick her up.) There are 21 kids in my class and none of them have these problems. They can all get dressed. I don't want to be different. It's so hard." My heart shatters a million times over.<br />
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She is tired. I am tired. I am sad. I am lonely. I am angry. I am frightened. I am thankful because I know it could be worse and I am terrified because I know it could get worse. We've only been at this since January but now I see the years stretching out before us. I don't want this for her. I can't have this for her. This can't be.<br />
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But I picked her up and held her and told her she is special and strong, and has so much to offer the world. I reminded her that we walk in the sunshine and practice gratitude even when it's hard. I hugged her and told her I get tired too but that we are in this together and she will be okay. It will get better. She will get better and better...look how far you've come already my love.<br />
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Grief. There is no other word to describe it. Simple grief. I saw a counselor for myself today because I've got to get myself support from somewhere. I will handle this and I will carry this and I will carry her every step of the way, but I need just a little support. Just a little corner to let the grief out. Thank you for being here, for being in it with me.Unknownnoreply@blogger.com0