Wednesday, October 31, 2018

A Dark Tunnel, Bricks, and A New Story--Navigating Adversity, Vulnerabilty and Resilience

Have you ever been lost in a dark tunnel without a flashlight?  You can't see behind you or in front of you.  You feel with your hands stretched out, each step a risk, as you have no idea what lies ahead.  It's too dark to turn back, you know you have to keep moving forward but you don't know where you are going or where this darkness leads.  It is so dark you can feel it, like a blanket you are clocked in it, so thick you can't remember what life was like before the lights went out.  This is the darkness of PANDAS, when the lights go out and the child you loved disappeared.   It is especially dark in the beginning when the diagnosis is unclear or help is scarce or unavailable.  You yell into the tunnel, you scream and your voice echo's against the walls; a chilling reminder that you are here alone, navigating through this darkness untapped and without a guide.  There were times that I navigated this tunnel on my knees, dragging myself through the muck, clinging to the hope that maybe I would find my way out.  I was to afraid to even stand,  lest I fall and never get up again, I was hanging on by a thread.  
Yet, what if I told you that on the other side there was light and laughter and joy.  That beyond the tunnel is the REST OF YOUR LIFE, for you and your child.  I know you can't see it, but it's still there waiting for you.  What if I told you that the darkness was just a curtain and that you were literally just a few feet away from the exit.  I wish I could just reach through and pull you out onto this side of hope; however, the only way to the other side of the tunnel is to walk through the darkness.  I hope that even as a whisper my voice will reach into the darkness and that when you hear the proclamation of hope you will keep walking towards the sound of my voice.  
When I was in the tunnel, I couldn't picture anything more than what was in front of me, I couldn't even see my own hand.  There were moments that I imagined giving up, just laying down and just dying right there on the floor.  Some days it was just hard to even breath, the grief was so heavy.  I couldn't write about it then, because it was so painful, and to be honest, I didn't have the strength to believe that things could ever change.
On the other side of the tunnel my son actually still has struggles and things are not 100 percent, however I am the one who has truly changed.  I have walked through something that has transformed me and I will never be the same.  Had you talked to me a few years ago, I would not have predicted this outcome.  At the time, I would not have imagined that this experience would improve me, in fact, I felt it brought out the very worst in me.  I want to share this with you, because I know you think you are the only one who is feeling these things, but that simply isn't true.  When my son was at his sickest, he was not redirectable or even reachable.  He would literally scream for hours and hours, he would throw things, break things, punch me, curse.  I was afraid for my other children so I sent them to my parents house.  I know now that his brain was on fire and this wasn't his fault but at the time, I didn't know what was going on.  I became reactive to him, I developed PTSD, but I didn't realize that was what I was experiencing.  When he would start screaming, I would instantly go into fight or flight: it became an automatic response.   I would scream back at him and I did not respond in a very productive way for either of us.  This of course only lead to more and more grief on my part.  I knew he was struggling but I was struggling too.   I was so scared, for him and for our entire family.  The guilt I had was as thick as the darkness, and like a brick I added it to my backpack, which I drug through the tunnel of darkness, making it even more difficult to get to the other side.  I carried these burdens alone for the most part; it's hard enough to have a child who is struggling immensely, but how do you talk about your failings as a parent?   How do you even face such doubt as your own ability to cope?  How do you navigate feelings of inadequacy?  It was beyond unbearable.  Could I tell people, there are days that I feel like I hate my own child?  Could I tell people that I was full of anger, guilt and despair and that I was struggling every day to get through?  I felt like I was dying on the inside, but I couldn't tell anyone because I was so ashamed of myself.  I was so ashamed of the way that I felt about my son.   I was ashamed of the things that I said to him in anger and in reaction to the illness that stole him from me.  So I hid these bricks in my backpack--the bricks of guilt, the bricks of failure, the bricks of shame and I told myself I was a failure as a mother, and I cried in the darkness alone.  
What if I told you, that there is a way to actually turn on the light in this tunnel.  It may not actually bring you out of it, you may still have to walk through it, because healing for us has not been linear, it has been up and down and everything in between, as it often is with PANDAS.   Here is how you turn on the light.  Whether your child has PANDAS or some other chronic illness or is just a challenging kid; We have to normalize shame.  We have to stop acting like it is unusual to be struggling as parents dealing with children who are chronically ill, with an illness that is debilitating at times.  We have to be honest about our humanness, and we have to be kind to ourselves.  For the past four years I lied to myself, adding brick upon brick of shame into my backpack.  It wasn't until I opened the pack and pulled out the bricks and started to name them, that I was finally free of them.  Where do you tell yourself "I am not enough?"    When you bring the bricks out that are weighing you down, and you identify the lies you are telling yourself, then you will be free of them and you will be able to walk through this tunnel a little lighter.  I almost lost myself in that tunnel, I gave everything I had and more, to try to heal my son, mean while dragging my backpack and dragging my unnourished, emaciated self through the muck.  What I mean is, when we are feeding ourselves these lies of "shame" and more so, the lie that "I am the only Mom that feels this way", the lie that "I am not a good enough Mom, or patient enough Mom" or whatever you say to yourself.  When we feed ourselves these lies we are depriving ourselves of the nourishment we need to face the darkness and get through the tunnel.  Whatever we set our mind on, will grow and expand.  The more I berated myself, tore myself down, envisioned a future that was hopeless for both myself and my child--the more the darkness grew, until it threatened to consume me.  This is such a slippery slope, and you fall into it without realizing it.  
Believe me I know where you are walking, I have been there and barely lived to tell about it.   I can't empty your back pack, you have to do it for yourself.  So tell me, what are the bricks you are caring around?  Will you bring them out into the light?  The more we Mom's bring out the shame we are feeling, the less power it has over us.   The second thing I would challenge you to do, is to attempt to write a different ending to your story.  I'm going to just be honest, the story I was telling myself was, "my son is probably going to grow up to be a criminal."  This isn't a joke people, this is where I was in my mind, because yes, it really was that bad in our home every day for a long time and I was drowning in sorrow.  I have to bring this out into the light, least any mother out there think she is alone. I just wont have it, I wont let this world loose a beautiful mother to this darkness or to the lies that threaten to beat us down and tell us we are worthless.  It simply isn't true.  So, I ask you, what is a story that you could write for yourself that is better than the one you are living now?  I know you can't feel it right now, but what if it could be true?  Could you write your story of hope the way you want it to turn out, and then keep it by your bed and read it to yourself every night?  It will speak into your darkness and give you hope, and each day you will believe a little more of it to be true.

This is my story:

There once was a beautiful boy, he struggled with many things and then he got very sick.  He was still the same beautiful boy but he was hidden from his family and transformed into something that was not the likeness of himself.  He appeared so different on the outside that after a time it was hard for even his parents to remember the beautiful boy that he was.  There was a shell around it him, it seemed as though it was him but there was only a trace of who he used to be in the dim light of his eyes.  His mother loved this boy more than her own life, she fought for him every day.  She made many mistakes as all mothers do, she fell hard on her face but like a warrior she got up and she fought for him.  With blood a sweat and tears she fought for him, on her knees and with heartfelt tears she begged the God that she loved to save her son and save her family.  As God often does, He didn't answer immediately, He was surely at work but He was doing more than just working on the boy, He was working in the heart of the mother, whom He truly loved and knew that she was more than she realized.  He had hopes and dreams and plans for the boy and his mother that were beyond either of their understanding.  Yet sometimes hopes and dreams are grown in the soils of hardships and pain.  God had a plan to use this mother and the boy to bring hope and light to others who would walk a similar path.  The mother clung to her faith if only by a thread and others prayed for her when she didn't have the strength to pray for herself.  The mother woke up one day as if from a daze and realized that she could not properly take care of the boy if she didn't take care of herself.  She realized she was weak and thirsty and tired and worn from the years of trial.  It was so hard to change, as she had always put the boy first, but she realized that if she continued this way, she wouldn't be strong enough to care for the boy so she set off to take care of herself first.  She first admitted she couldn't do everything for him, she needed help so she asked for it.  She enlisted others to help her.  She started to talk about her struggles and bring her pain into the light.  The more the light shown on her the more she grew and strength entered her body and feed her soul.  She started to make herself a priority, she feed herself with nourishing food and exercise to strengthen her mind and body.  She took care to sleep and she fed her mind with words of truth and empowerment.  She threw off the sack of heavy bricks and lies that kept her from standing up tall.  Something strange happened.  She started to see the boy under the mask that kept him hidden, she remember the child he was and she spoke truth into his life.  She prayed over him when he was asleep and even though he was still hidden from her she believed and started to hope that he would get better.  She refused to entertain the thoughts that added weight to her backpack, she threw them off along with the lies of her inadequacy and she started to walk with her head held high.  Even when he wasn't well, she became well, because she knew that his healing depended on her caring first for herself.  She set her heart towards the belief that he would be fully healed and she told herself this even when it wasn't true yet. 
This mother grew and she thrived and she lived to tell her story to any who would hear it.  She didn't have the perfect boy, and she wasn't the perfect mother.  But she was the best mother she could be.  Her beautiful boy came back to her, and even when he struggles now, she doesn't react or fall back into fear that he will be taken again, for she knows he is always her beautiful boy, and she knows she is the best mother for him.  She has come to be this mother as she grew out of the soil of adversity, nothing can steal this from her, she has lived to tell the story and so will you.  

This is an amazing video by Brene Brown, it really encouraged me and inspired this post: https://www.youtube.com/watch?v=iCvmsMzlF7o

Friday, October 26, 2018

First Infusion



It’s been a long time since I’ve posted.  Life has a way of getting in the way of blogging and honestly things just have been so up and down that sometimes it’s hard to write about things in fear that a good day might switch to a bad day right after.  Since it's been a while, let me start from the beginning for those just joining in and to help give hope to those of you in the midst of this process.  

It was the first day of Christmas Break that our world turned upside down.  We picked our son up from school, he had just completed the first semester of second grade.  It was like a bad dream, just as soon as Storm got in the car he then bolted out the door into oncoming traffic.  I remember all the smiling families picking up their kids after the class holiday parties.  It seemed surreal, as I ran as fast as I could past them all to tackle my son on the school yard, before he ran into the street. He was screaming something about wanting to die and I literally had to carry him kicking and screaming, to the car, all the way across the lot in front of countless onlookers.  Once in the car, I held him the entire way home while my husband drove.  My son was spitting on me and clawing at the door like a wild animal trying to jump out of the moving vehicle.  When we got home it took four adults to hold him and prevent him from self injury while he screamed for hours.  If we let him go he would try to run out of the house or ram his head into the corner of sharp tables.  He was completely irrational and I was terrified at what was wrong.   He couldn’t be redirected or calmed.  He finally cried himself to sleep.  Soon after this first episode, we ended up doing the unthinkable and admitting our seven year old son to the psychiatric ward.  Unfortunately he left there in worse condition than when he came, we knew something was desperately wrong but the doctors were not listening to us.  Over the next two years we saw psychiatrist after psychiatrist, doctor after doctor.  Every new Doctor added a new  diagnosis or plausible answer: autism, bipolar, intermittent explosive disorder, OCD, severe ADHD. In the same manor the doctors continued to heap on more medications, when I explained the medications weren't helping they insisted I increase the dosages.  Not only did this not relieve his symptoms, he seemed even more aggravated.  The school was calling me daily saying he couldn’t focus, couldn’t sit still, and that it was like he was “crawling out of his skin.”  At home he was emotionally volatile, crying continuously like a colicky baby most of the hours that he was awake.  I later came to understand many of these responses were related to severe anxiety but it took me a long time to come to this understanding.  He became obsessed with decorating the outside house with lights and spent literally hours daily re-arranging the decorations, needing to have things perfect.  I explained this obsessive behavior to the doctors but they deemed it unimportant due to the fact that it was the holiday season and he seemed to "enjoy" the obsession for the most part.  There were other times that he would sometimes just rock back and forth in a corner drooling and saying the same words over and over again.  He regressed academically and this was proved with testing before and after that showed his handwriting skills had deteriorated.  At the time we were beyond perplexed, we were devastated at the loss of our child and the deep isolation that his behaviors brought.   There were weeks which turned into months in which we couldn’t leave the house for very long or even go to church.  I eventually started homeschooling all my children because his behaviors and the trauma we were dealing with was causing all the children to struggle.   I was in survival mode for at least two years straight.  I gained a lot of weight, I was overwhelmed.  I didn't really want to go to family gatherings because I felt so ashamed of his behaviors and overwhelmed by them, activities with a lot of people seemed to set him off so being social was difficult.  Many nights I laid prostrate crying on the floor begging God to heal my son or take him from this earth because I could not foresee a life for him or for us if things continued this way.  It was really that bad.  I will admit that there were times that life seemed hopeless and I dabbled with the thought of if it was worth living in this hell that was our home.  I share this because I know there are other mothers in this darkness and sometimes it is so thick that you could cut it with knife.  It's hard to see any form of light beyond the day to day struggle to just survive, but I assure you, you are worth it, your child is worth it and you are stronger than you know; you can get through this.  
When I wasn’t crying I was researching constantly.  Shortly after his admission to the psych-ward he got a really bad case of croup in which I had to call the ambulance and he got inhaled epinephrine on the ride over because his throat was so tight.  When we got to the ED the attending swabbed his throat and he had strep.  Interestingly, 72 hours on antibiotics and steroids and my son was back!  I took note of the fact that all his behaviors, tics, anxiety, anger, ADHD—everything resolved. 
In the fall of 2016 we found an immunologist who drew blood work and found Storm to be immune compromised.  He advised me to come back when he was symptomatic with tics and behavior issues. 
Like clockwork, the symptoms came back so we returned to the immunologist.  He did a throat swab 
and it was positive for step.  We started him on antibiotics and steroids and saw the same improved 
results while he was on them.  My son was diagnosed with PANDAS which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection. 
I was so relieved to finally have a diagnosis that made sense and that gave us the hope of treating and recovering our son.  We continued with the immunologist and found a PANDAS specialist and began using many modalities to decrease the overall inflammation in his body.  I may do a separate post on the treatments we did but we used a variety of supplements as he was found to be deficient in many vitamins and minerals.  We also had his brothers' and his tonsils and adenoids removed last March as his younger brother developed tics and OCD as well.  We have seen many improvements in Storm over the past two years.  
The worst time for him always seems to be fall and winter months which makes sense in light of his immune deficiency.  About a month ago he started struggling again, nothing like the first episode all those years ago but enough to heighten my concern.  I brought him back into the immunologist and he was started on a “crisis protocol” which includes antibiotics and anti-inflammatory medications and antihistamines.  These things helped as they usually do but his immune counts are even lower than before and the immunologist drew a lab that is specific for brain inflammation and it was elevated.  Who imagined I would ever be relieved to hear that my son has inflammation in his brain?  However, after all we’ve been through, it confirms again what I have known in my heart all along, my son’s brain is on fire.  He’s not a bad kid, he’s not mentally ill, he’s very sick and he’s doing the best he can in spite of all he has suffered and struggled with.   When he is sick he doesn't get fevers, his body doesn't attack the infection, it attacks his brain.  He will act impulsively,  struggle to focus,  make lots of noises, vocalizations and have lots of sensory issues.  He tends to get overly hyper, one time when he was sick with a fever of 102 I didn't even know he was sick because he was bouncing off the wall, bouncing into everyone and everything and jumping and spinning all over the place.  It wasn't until I saw him shivering that I took his temperature and realized he was sick.  When he's really unwell he is so full of anxiety and so rigid in his thinking that he will scream and curse and this is the hardest for me because we do not curse in our home and I did not raise him this way.  He will appear defiant and disrespectful, but this is not his true self.  For so many years I was so afraid of the judgement of others who do not understand.  I allowed these lies to penetrate my heart and define both him and me.  I felt worthless and I felt I was a failure for not being able to "discipline him," or control my son.  I felt ashamed and embarrassed.  Of course I felt grief because I wanted a boy who could just be a boy and not be hurting his friendships with behaviors that really cause the other children to dislike him.  How can I blame them, no one wants to be spit on, no one wants to be pushed or bumped into or have someone make screeching noises in their faces.  Believe me, when he is like this even I struggle to tolerate it.   So many nights he has cried in hindsight, saying "I just want to be good, it's too hard to be good."  I have heard other mother's of PANDAS kids say their children say the same things.   It took a long time for me to separate the actions from the boy.   Yet I know this is not who he truly is.  Deep inside he is a very deeply spiritual child, he loves God, he loves his family, he is very driven and has an amazing work ethic, he is kind and very in tune with the feelings of others, he is not quick to judge others and he is quick to forgive. The Jekyll and Hyde effect still happens but not as often as in the past.  In fact, he had almost ten good months with very minor flares in symptoms until recently.  Now I know what is really happening behind these behaviors and I am able to have more compassion for him and myself.  Of course I am continuously learning more patience, I will not say that I have mastered this aspect of character.  
And here is where I have a quick word on mental health in general.  I can’t tell you how often I see posts about changing the stigmatism of mental health, yet there is so much work to be done.  I appreciate so much when people come forward on social media, and in other ways, and are vulnerable about their mental health struggles.  This is shining light on the fact that many people struggle and gets us away from the mind-set that people who struggle with mental health are “crazy.”  That being said we are still far from solving the crisis of mental health in this country.  There are not enough resources for families, and there is very little support.  What support that is available is often very expensive and there are long waits for services and tons of red tape to access it.  As a result, parents spend hundreds of thousands of their own dollars on therapy and treatments for their children.   These parents are hurting, they are doing everything they can to help their children, but many doctors are not willing to think outside of the box or research ways to help.  This is not an attack on our pediatricians who are likely overworked, under paid and under appreciated.   However, we need doctors to understand the immense amount of suffering these families endure by not getting diagnosed in a proper and timely way.  The need to recognize that there is a lot of trauma involved in not being heard or validated when you have suddenly lost your child to the abductor that PANDAS is.  Some claim doctors are afraid of the possible overuse of antibiotics,  however the next treatment offered to my seven year old was Lithium.  I assure you the side effects of Lithium are worse then antibiotics for a short time.  More so, the consequences of misdiagnosing a child with a life long mental illness without exploring the possibilities of immune compromise, thyroid disease, autoimmune disorders, inflammation, gut health or even sub-optimal physical health is negligent.  It's time to recognize that we are whole beings and the brain and mind are not separate from the body.  Science has told us that the gut and brain are connected and that gut health plays a huge part in physical health.  However, I see kids quickly diagnosed with psychiatric and neurological issues like Tourettes, Autism and ADHD without examining the causes behind these issues.  It's easier to give someone a pill than investigate the route cause, or look at their diet, their sleeping patterns or how much time they are spending indoors playing video games rather than outside in nature.  Not just PANDAS, but mental health issues in our children are becoming an epidemic and I can't stand by and be quiet.   We can improve our health and the health of our children, but it's not going to be a quick fix.  Again, don't misunderstand me, there is a place for medications but I think in children who are developing we need to look at the whole person, we need to explore safer alternatives before we hand out medications like candy.  
As a society we are far from being tolerant, and I have experienced this first hand.  It so much easier for onlookers to judge than it is it is to examine your own heart, step into the shoes of a hurting family, or ask how can I help?  Like a child with Autism, PANDAS is not visible from the outside, the child looks and may seem to be developing normally to onlookers.  It is easy to see a child who is screaming or misbehaving or being impulsive and blame him for being a terrible kid or blame the parents for not disciplining their child.  There will still be people who believe that a kid with PANDAS can just be “reasoned with,” but those people have never lived with a child in a severe flare-up.   I personally, will never see a "misbehaving child" the same again.  I usually ask myself, what is this child going through?  What do they need?  What is their behavior trying to say?  It is a new way of thinking that involves throwing off your pre-conceived notions and personal judgments and realizing that kids that are acting out are likely hurting or trying to communicate something you may not understand.   What about the epidemic that our teens are facing with depression and anxiety, especially our teenage boys?  Is it any wonder after years of being "misfits" that they commit suicide or such atrocities as school shootings?  What are you and I going to do to change these statistics?  Do you think that more drugs and therapy will fix these issues?  That will never be enough to overcome years of being told you aren't good enough, that you are broken, that you aren't smart, that you can't behave or fit in.  It is the responsibility of each one of us to change this through our actions:  By teaching our typical children that there are children that learn differently and process information and even sounds differently.  By teaching our children to be kind and to put themselves in the shoes of others before they judge.  By teaching our children to speak up before they lash out.  I don't think that my son's bad behaviors should be ignored or "tolerated."  I want him to learn the correct social ways to behave and I want him to respect myself and his peers.   I am grieved when he is struggling and I feel bad that your child had to deal with his annoying habits, but he still needs to go to school and learn and practice or he will never learn the "right way to behave.  Teach your child to speak up for herself or himself but to be kind.   They might say something like "when you make raspberry's in my face it makes me upset, can you do that somewhere else or do something else if you need to make noises?"  It would be so amazing if we could teach our children to ask for what they need but to also be kind.  Rather than assuming their peers are mean or insensitive, teach your children to imagine that their peers might appear to be misbehaving because they are stimming or having tics or sensory processing issues.   Further, the child who seems to be a bully might be hurting and might have learned that the only thing he or she is good at is getting in trouble.   Also, you never know what one word of encouragement can do, or how believing the best about someone who is struggling can empower them.  The teachers who have built my son up, the Taekwondo instructors who have pointed out his strengths, the adults who have spoken truth into his life--they have had the greatest impact as he strives to meet their expectations against all odds.  
This is no easy feat, to see the good in those who drive us crazy sometimes.   I am working through my own humanness, and the ways I personally found myself ashamed of my son, and how that affected my reactions to him and my relationship with him for a long time.   I still worry about what other people think of me but I am working on this. That being said, we have come so far and I have incredible compassion for those of you just beginning this journey and I want you to know that you are not alone.  I want you to know that the child that you are dealing with really is sick and this disease and these behaviors do not define them, nor do they reflect on you as a parent.  This is not the end of your story.
So that brings me finally to today.   We are doing our first IVIG infusion.  IVIG or immunoglobulin is a blood plasma product taken by many donors and infused into his body to give him antibodies to fight infections that he isn’t able to fight due to his impaired immune system.  It is the immunologist’s hope that an improved immune system will help reduce and heal the remaining PANDAS symptoms.  I waited a long time to try this therapy because I was very fearful of the side effects which can included anaphylaxis, severe headaches, vomiting and nausea and rarely aseptic meningitis.  I’ve read some kids have a really bad PANDAS flare and regression following the infusions, every child is different.  God opened the door and we are waking through it today.  I will try to post an update for those of you who are yet to do this so you can know what our experience was.  We started pre-treating him with the antihistamine Zyrtec a week ago and will continue this indefinitely.  Per the immunologists recommendations we added in Zantac 75 mgs three days before and will continue three days after.  We have been drinking electrolyte water for months, I get one that is natural called Ultima Replenisher on Amazon which is free of dyes and added sugar.   It is advised to drink electrolytes daily for a few days before and really be hydrated and continue to push fluids for several days following infusion, you will know you are well hydrated if your urine is light in color.  Also my son tends to get headaches and reacts negatively to many medications so he is also getting Motrin before and after the infusion and Benadryl before the infusion to prevent allergic reaction.  So far we are almost three hours into the infusion with no adverse reactions.  I am told that the side effects usually peak on the third day so I will update our experience.  
Thank you to all of you who have upheld us with your prayers and who have encouraged and supported us through the hardest times.   We have learned so much and we are continuing to learn and grow through this trial. I can tell you that I am not the same person that I was a few years ago.  As I mentioned I really stopped taking care of myself and it wasn't until a year ago that I realized that I really did have caregiver fatigue.  It is pretty hard to come through this journey unscathed, but there are things you can do to preserve your sanity and I think even thrive, which I never would have believed before.  I will try to post on this next, as we Mom's really need to stick together and walk through this as a community.  Here is the link to the PANDAS facebook group for those of you who are really in need of support right now.  I'm back now and will try to keep this site active, be patient with me as I try to respond to your emails.  Also, stay posted for a new website which I will be launching in the upcoming months.   Keep fighting Mamma bears, you've got this!