Diagnosis: PANS/PANDAS

Diagnosis: PANS/PANDAS

Diagnosis: PANS/PANDAS

When a child experiences a sudden and drastic change in behavior and emotions, many parents are at a loss.  Understandably, they most often seek medical intervention to find healing and at a minimum, a diagnosis.

It is not uncommon for a child to be misdiagnosed over and over again with no improvement in these symptoms.  Even worse, the correct diagnosis of PANS/PANDAS is discovered when it is too late.

What are PANS & PANDAS?

According to the Childmind Institute, PANS and PANDAS (two separate but related conditions) are:

PANS and PANDAS are severe forms of obsessive-compulsive disorder (OCD) that appear suddenly (acute onset) in young children, accompanied by other confusing and distressing symptoms. 

If the onset of these symptoms is linked to a strep infection, it’s called PANDAS — pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections — which is a subgroup of PANS. Some 86 percent of acute onset OCD cases are linked to strep. Children especially at risk are those who have what doctors call “occult” or hidden strep infections — that is, children who can be “carriers” of the infection but don’t get symptoms themselves, and hence don’t get treatment.

PANS cases have also been linked to other infections, including Lyme disease, mononucleosis, mycoplasma (walking pneumonia) and the flu (such as H1N1). 

PANS Hits Home

Two summers ago, my family was thrust in one of the most frightening experience of our life.

Overnight, we lost our 12 year-old daughter.  She lost her joy.

The word horrifying does not do justice for the drastic emotional spiral that my daughter experienced that summer.

Consequently, we were trapped and paralyzed by my daughter’s terror…  wait… what?  Terror?  Yes.  Terror.

Before the Diagnosis

Many of my dear friends and community know that my oldest daughter is one of the happiest and most loving people ever.  Really and truly.  She was born with a smile on her face and has always been known for her empathy, kindness and heart for others.  Her zeal for life and hunger for adventure and thrills made her the perfect roller-coaster date for her daredevil daddy.

So when my oldest woke up one morning in a state of frozen terror at the thought of leaving me, we knew something was up.  The severity of her separation anxiety and her sudden fear that I was going to die demobilized her.   She could not even be in a separate room from me.   Without a doubt, we were rocked that summer.

Desperate Search for Answers

After months of searching for answers, by God’s mercy and intervention, a neighbor reached out to me and told me to get a Strep test for my daughter.  (Yes.  As in Strep throat.)

She told me that her son had gone through the same thing a year prior.  She ended up begging for a Strep test and full workup for her son as she had heard of this illness striking children left and right.  Apparently, it had something to do with the Strep bacteria…

Because she couldn’t find any other logical answers for the fact that her son suddenly couldn’t function away from her, she figured she had to try.   At that point, she brought her son to the pediatrician and it was then that her doctor confirmed it.  Her son was infested with the Strep bacteria (with no symptoms apart from sudden onset of severe anxiety and OCD-like behaviors).

In a similar fashion, this mom like so many others had to FIGHT to get a proper diagnosis for her son’s PANS/PANDAS.

Her son has made a full recovery.   Unfortunately, this is not always the case.

My Daughter’s PANS/PANDAS Diagnosis

Sadly, the two months of PANS in my home is exactly how so many other moms describe it.  It was HELL.

My daughter was tormented every day by fears and thoughts that she couldn’t stop… fears and images of losing me.

That summer, she did not go to one sleepover.   My precious girl spent the entire two months clinging to me and sobbing in fear.  She was so confused about what was happening to her as were her father and I.  No one understood.

My martial art-loving, friend-seeking, fun-loving daughter did not leave my side that entire summer because of debilitating fear.  It was hell.

Watching her suffer in such emotional turmoil and agony was heartbreaking.

But God…

By His grace that neighbor stoppped by my house that Sunday afternoon.

And because I had nothing to lose, I opened up to her about this summer from you-know-where.

Of course, in His infinite mercy, He led me to the knowledge I needed to get my child diagnosed by an amazing Nurse Practitioner.

 

PANS/PANDAS: Professional Ignorance

Many doctors try to “poo-poo” the idea of PANS/PANDAS because they don’t know enough about it.

Sadly, we have all heard stories about doctors who dismiss a mom’s cry for help as dramatic and emotionally-charged

However, I am so grateful that our story did not lead us to a dismissive doctor.   Kim Bivens, RN, CPNC, MS and the team of doctors at  Arboretum Pediatrics in Charlotte, NC were amazing and took this emotional momma seriously.

After hearing my daughter’s symptoms, Kim immediately grabbed the other doctor still in the office and debriefed him.  They both agreed that a full blood work-up was warranted based on my daughter’s sudden onset of severe separation anxiety.

Within two days, we had the first of 5 vials of blood back… my daughter’s blook was flooded with pneumonia (mycoplasma) bacteria.

The pneumonia bacteria displayed itself only through my daughter’s sudden OCD-like behaviors and fears.  We had zero indication that she had pneumonia.

My daughter was immediately treated with low-dose anti-biotics for 30 days and is back to her old self.

Diagnosis PANS/PANDAS Came Soon Enough… for us….

This is rarely the case.  Here is the story of another mother fighting for her son finally diagnosed with PANS/PANDAS after 7 misdiagnoses.

Don’t do this mom thing alone, Friend

Moms, we have got to be willing to do this parenting thing differently and fight for our children regardless of what others think of us.

God chose you on purpose to parent your child.  You can do this!!!

Join an amazing community of moms fighting to equip outside-the-box high-needs kids for a life of confidence & purpose.   Join my private Facebook Group today.   I’d be honored to walk alongside you, Friend.   #momsequippingmoms

Let’s Equip our Neurodiverse Children Well

Let’s Equip our Neurodiverse Children Well

Neurodiverse children are people too

Do you believe that our children are all unique? After all, there are millions of neurodiverse children in our country.  Why, then, do we as moms struggle so much when our children think and process the world differently.  I think it is because we have believed a lie, Friends.
This idea that tells us something is wrong with us as moms if our children are struggling to fit inside the box? This false belief that if traditional approaches to discipline and education aren’t working then something must be wrong with our child?   Could it be that all of our children are actually unique?  Wait for it… could it be that all people are different in many ways and that diversity includes more than just gender or skin color?  Could we possibly join together and allow our neurodiverse children to thrive?
How about we trust ourselves and trust that God has chosen us ON PURPOSE to raise our precious children? How about if we try something different with our neurodiverse children?

What is neurodiversity?

According to Understood.org, neurodiversity is:

Neurodiversity is a viewpoint that brain differences are normal, rather than deficits.

The idea of neurodiversity can have benefits for kids with learning and thinking differences.

This concept can help reduce stigma around learning and thinking differences.

Mom’s Perception Can Change Everything

Mom Friends, we have to keep it real if we want to love our children well… Let’s keep it real for one another…

For the kids that can’t seem to “get it together”…

And the child who is struggling to fit inside the box…

What about the one who feels as though he can do nothing right?

Let’s be authentic for the tween boy. You know him… he is the one whose heartbeat skyrockets in gym class. His heart pounds profusely not because of a great game of basketball. He is dripping with sweat because he knows he is about to be humiliated yet again. Sports are NOT his thing.

 

Moms Equipping Neurodiverse Children

Fear not, Friends, for that momma who watches her child break down with anxiety when it’s “homework” time.

Can we please be brave enough to stand with the mom who has been “kicked out” of playgroup? The one whose child doesn’t know how to “behave” appropriately?

Shouldn’t we prioritize love for the momma who wakes at 2:00 am overwhelmed with anxiety because she knows her child is struggling.  Her mind races as to what she can do to lift up and support her child well for his future.

For the mom who is late to church because her child threw a fit in the parking lot because the tag on her new pair of pants is driving her INSANE.

For the family who would love to enjoy a family outing but that one child is screaming bloody murder because his sister won’t stop singing…

Our Kids Need Us to Believe in Them

Imagine what would happen to the kids, who most would tell us to continue pushing and disciplining and punishing for “bad behavior.”

What would happen if we as parents, came alongside these neurodiverse children and embrace their differences as a blessing.  Moms sharing a vision of a bright and thriving future for each of our unique children.  What if we moms rally together to provide our neurodiverse kids the tools they need to get there?

Perceived Weaknesses as Great Strengths

Our greatest strengths are often our greatest weaknesses…

Our greatest weaknesses are often our greatest strengths…

What if we looked at our child through a new perspective and looked for strengths out of apparent weaknesses?

What if we then equipped them with the emotional, educational, and practical tools to use those gifts to grow into the adults that God has created them to be?

Can you imagine???

No more kids growing up with self-worth that tells them “they will never be good enough!”

Every child has gifts and talents and purpose.

Let’s begin to parent them this way, Mommas… and let’s watch them fly…



xoxo

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Calm a Child During a Meltdown

Calm a Child During a Meltdown

Perspective Shift on Meltdowns & Discipline

Knowing how to calm a child during a meltdown is not easy. Parenting a child with special needs is exhausting.  However, the needs of the child and how his cognitive differences show up on any given day will impact the severity of mom’s fatigue. Mom’s burnout is exponentially magnified when her child struggles with behavior issues. For that mom in the trenches, finding a way to calm her child during a meltdown can be impossible.

Without reservation, while I was in the thick of daily tantrums and meltdowns with my son, I was a mess. Anyone who knows me has heard me repeatedly say the same thing over and over again.

Yep, in that season of absolute misery, I wanted to “check myself into a mental institution.” All of the parenting strategies I knew to use were absolutely useless and I felt helpless. I had no idea how to calm my child during a meltdown.

Shifting Perspective On Discipline

Prior to the adoption of our son, I would never in my wildest dreams have believed that I would have zero control of my child.  Once my son’s volatile behaviors began to display themselves at 18 months old, my world was completely rocked.  All that I thought I knew about being a good Christian mom went out the window. 

In fact, each technique and strategy that had been effective with my girls was useless and completely ineffective with my son.  Read Special Needs & Need for Perspective Shift on Discipline to learn more about our journey. 

I was the mom who had read all of the Christian parenting books out there.  When my biological children had a meltdown, I could bring order quickly. A firm voice or swift consequence and I had successfully trained my child to calm down from a meltdown. In hindsight, I can see now that my perspective on parenting was pretty skewed from the beginning. Determined, I was going to parent my children the EXACT OPPOSITE way my parents had raised me.

In my home, there would be love, stability, consistency and discipline. Dang it!

Oh, Mercy!  God clearly had other plans for our family when He brought our boy into our world. 

By the time he could move, our son steamrolled his way through our home.  He screamed bloody murder every moment of the day. Destruction was his middle name. He manhandled anything and everything in our home. Some of the behaviors we navigated on a daily basis included: scaling walls, escaping the house, hitting, scratching, biting and destruction of property.

There wasn’t a single discipline strategy that helped calm my youngest child during his raging meltdowns. Consequently, I suffered deep emotional anguish. As I have discussed in previous posts, we lived in a war zone, navigating grenades at every turn.

Despite being surrounded by a loving Christian community, I felt like I was drowning. I felt alone, isolated and I eventually believed I was a failure as a parent. At times I believed that we had made a mistake in adopting our son. Plummeting to the depths of despair, I was desperate and broken. Broken for my husband, my two biological daughters and my adopted son. His hourly meltdowns were too much for me.

christian mom, parenting support, adhd, special needs, autism, aspergers, sensory processing disorders

Download Your Free 4Four Steps to Meltdown Recovery Cheat Sheet

“Parents take way too much credit when their children are doing well. They take way too much credit when their children are doing poorly.” 

Rather than checking myself into a mental institution for what promised to be a mini-vacation, I decided to make a different plan. In order to prevent myself from “setting the house on fire because I was about to lose it,” I made an appointment for counseling.

Side note: No one panic… I was never going to set my house on fire. I use A LOT of hyperbole when I tell a story. Its one of my gifts. Ha!

Back to it…

One winter morning after a few hours of desperately trying to calm him during one of his meltdowns, I made the call. I was so overwhelmed with his screeching,with knowing my daughters were struggling in his chaos, and with my own internal distress that I knew I had to do something.

I sent out a mass text S.O.S. to my tribe of girlfriends and asked for a referral. Within an hour I had a the name of a counselor.

Beginning the counseling process in that season has been a life saver for me.  God used that time of absolute hell to humble me. That season was so humbling and broke me in a million tiny pieces. My prideful butt was so black and blue from the beating that my son’s behavior inflicted upon me.

In true form, God took those million pieces, gathered them up, and delivered me into Christian counseling.  Unquestionably, I had a lot of my own emotional garbage to weed through.   Apparently, I needed a major kick in the pants to make that initial call.

Needless to say, my astute counselor and I have done some serious work these past few years.  One of the many nuggets of truth she has offered to me has been this.

We as parents take way too much responsibility for the successes and failures of our children. 

It took me awhile to chew and digest this, but I finally got it and was able to receive this concept for the truth that it brings. 

God is God. 

I am not God.

‘Yes, Lindsay. I know that,” you may be thinking. ‘How does that have anything to do with my ability to calm my child during a meltdown?’

Let me put it to you this way. My ability to make any human being do anything is non-existent. I am unable to control people, even my little people.

Yes, I can influence, teach and guide my children and others.  In the end, though, I don’t have control over anyone but myself. 

I didn’t realize how unhealthy it was for me to view (although not consciously) my children’s behaviors as a reflection of me. 

Having gained that new perspective, I was able to see how in years past I had disciplined my girls from a place of my own pride.  How often do we as moms torture ourselves about what other moms think of us?

  • I wonder what “So-and-So” must think of me after my daughter pitched a fit at the playground?
  • How did I look as a mom to the mom sitting next to me in Bible Study? 
  • That lady must think I am a horrible mother because my child threw a fit in the parking lot!
  • His preschool teacher must think I am a terrible parent because I could not calm my child during his meltdown.

I realize now how often my parenting has stemmed from my own “self-centered” ego. From my need for the approval of others. Yuck!

It was my inability to control my son that saved my entire family. 

I couldn’t stop my toddler from running into the street.   Nope.  We couldn’t prevent him from using a broom handle to unhook the chain locks and escape to run wildly through the neighborhood.  Forcing him to sleep and to “obey right away?”  Calm my smallest child during a destructive meltdown?

Yeah right.  I had zero control then and I really have zero control now. 

It took years for me to finally realize that in order to effectively parent my son, I had to completely shift my perspective on parenting and discipline. 

My little boy, like so many adopted children, through no fault of his own, was exposed to dangerous substances that severely impacted his developing brain. I had to wake up to the notion that his cognitive differences made his ability to self-regulate a very difficult task. 

A Complete Shift in Perspective Led to Big Changes

The key to learning how to effectively discipline my son was to shift my perspective. Historically, I had viewed his behavior through the lens of “He is choosing not to behave.” Once I recognized his need to be taught how to “behave” (self-regulate), I began to respond to his meltdowns with a new freedom.

We have seen HUGE changes in my son’s behavior since this shift.  Miraculous changes. Not perfection by any means, but huge gains in his ability to recover and calm himself down. 

Fortunately, I have learned so much about parenting children with different cognitive issues over the past several years.  Additionally, I have been blessed with an education from amazing local specialists. As I have become involved in adoption and special needs communities, I have gleaned so much more compassion for these precious children and their parents.  

Steps to Recovery

The compassion that I have developed for children who are “wired-differently” has fueled the development of my organization, A Heart For All Students. I have begun this journey to equip moms with a greater understanding of their children’s wiring and resulting behaviors.

My goal is to free moms from the emotional chokehold of our culture’s traditional parenting mentality (punishment and rewards) so they can more effectively and confidently parent. When Mom (and Dad) are free to parent and love based upon their greater understanding of the needs of their unique child, true growth for all begins to occur.

Over the past couple of months, I have begun to observe the repetitive steps that I use to help my son recover from a meltdown or tantrum (there is a difference between the two, but for now, I will use the terms loosely.)

When I was in the thick of chaos and confusion, I would have done anything to have someone come alongside me and walk me through this journey. I don’t want any mom to have to suffer in isolation the way so many of us do.

My heart hurts for all of the children who grow up believing that they are “inherently bad” because they can’t seem to get it together. So many adults are now living from the dire emotional consequences of a childhood lived as a disappointment to the adults around them.

Becky Bailey & Karyn Purvis

Ultimately, I owe so much of my new parenting education to Becky Bailey, PhD and the late Karyn Purvis PhD. The separate work of these two ladies combined with my own education and training has been the most influential resources that have impacted my shift in what is effective discipline and parenting.

These amazing women have written books that are on my recommended reading list for moms of special needs kids. Download that free download here.

The Cycle Has to Stop with Us, Friends.

While I know I cannot serve each child and mom (and Dad) individually, I can share with you, Friend. My heart is to share what I have learned in this journey with you so that you can equip your child for the incredible life that God has planned.

Later, when you see that distressed mom in the grocery store with her screaming kid, you can reach out to her. She is everywhere. She needs community and someone to care and believe in her. Let’s love our children well by loving mommas in the messiness of meltdowns.

christian mom, parenting support, adhd, special needs, autism, aspergers, sensory processing disorders

I have been writing like a crazy woman all summer long, creating my course with the most useful information that I have received through four years of absolute you-know-what. I want to provide the mommas “in-the-trenches” with actionable content while also providing the “why” behind the strategies and steps that I offer.

This material really should be called: “What I would have KILLED to know when in the you-know-what of Special Needs Parenting.” Ha! What do you think? I’m open to ideas… seriously… 🙂

Join my Private Facebook Group for Exclusive Content, Announcements and Q & As with me and my amazing Tribe of REAL moms. No judgement zone ahead! 🙂

special needs mom meltdown step

I am so excited to launch my ecourse filled with in-depth explanation and the Behind the Behaviors: The Why & How of the 4 Steps to Meltdown Recovery. My goal is to provide you with actionable strategies to equip your struggling child so that he can navigate big emotions well. I want to cut through all of the wasted energy and information that I encountered during my 4 years of on-the-ground meltdown training and share what I found to be most useful.

These steps are the basic framework of meltdown recovery to get you started. I will equip you with the why and hows in the course. Yay!!

We are a Tribe & we need you!

I need your help in order to not only help you, but also that “in-the-trenches” special needs mom in your community. She is there and you will find her. She is the one dripping with sweat manhandling a screaming 7 year-old boy in the bakery aisle. Encourage her, Friend. Point her to this ecourse and our growing Private Facebook Community. We are in this together.

What About You, Friend? How do you walk alongside your child during a meltdown into recovery and calm? Comment below. Would love to know your strategies. 🙂

Grab Your Free 4 Steps to Meltdown Recovery Cheat Sheet!

 

Deepen your parent-child relationship.

Equip your child with  tools to navigate BIG emotions in a healthy way.

Empower your unique child to live a life of confidence and purpose.

Create peace & joy in your home and ENJOY your child.

Perspective Shift on Discipline, Part 3

Perspective Shift on Discipline, Part 3

Shifting My Perspective on Discipline:

An excerpt from the ebook Embracing Parenting Imperfection.  

I remember trudging into the pediatrician’s office one morning after my 65th night of no sleep.

We were there for Little Man’s 3-year well-visit.  I was a mess.  Sleep-deprived, no shower, (not even sure if I had brushed my teeth that morning), and in the same clothes I had “slept” in.  It took every bit of my strength to wrestle my screaming son into his own car seat to make it to the appointment.  (Like I mentioned in Part 1 and Part 2, he was literally ALWAYS screaming.”)

Our doctor finally entered the room.  The humiliation flooded my soul the minute he stepped in to meet with us. My son could not sit still.  In the few minutes that we had been waiting in the tiny primary-colored holding cell (ahem… office?), my son had literally destroyed the space.

He pulled out almost an entire package of sterile gloves. My boy sucked on more than 10 cherry-flavored tongue depressors while leaving a trail of wrappers in his wake. His curiosity led him to open every cabinet and drawer. A need for visual stimulation had him switch the lights on and off more than 100 times. He completed all of this while screaming in frustration.

I had nothing left.  I had tried everything with him. As our pediatrician entered the room, the tears poured down my face in utter exhaustion and mortification.  I was flooded with the idea that I was truly an utter parenting failure.

Grab Your Free Behind the Behavior Bundle!

Grab the ebook and the cheat sheet in one bundle!

Deepen your parent-child relationship.

Equip your child with  tools to navigate BIG emotions in a healthy way.

Empower your unique child to live a life of confidence and purpose.

Create peace & joy in your home and ENJOY your child.

Perspective Shift on Discipline, Part 2

Perspective Shift on Discipline, Part 2

special needs parenting, moms, support, meltdowns, tantrums, adhd, autism

Shifting My Perspective on Discipline:

An excerpt from the ebook Embracing Parenting Imperfection.  

I remember trudging into the pediatrician’s office one morning after my 65th night of no sleep.

We were there for Little Man’s 3-year well-visit.  I was a mess.  Sleep-deprived, no shower, (not even sure if I had brushed my teeth that morning), and in the same clothes I had “slept” in.  It took every bit of my strength to wrestle my screaming son into his own car seat to make it to the appointment.  (Like I mentioned in Part 1 and Part 2, he was literally ALWAYS screaming.”)

Our doctor finally entered the room.  The humiliation flooded my soul the minute he stepped in to meet with us. My son could not sit still.  In the few minutes that we had been waiting in the tiny primary-colored holding cell (ahem… office?), my son had literally destroyed the space.

He pulled out almost an entire package of sterile gloves. My boy sucked on more than 10 cherry-flavored tongue depressors while leaving a trail of wrappers in his wake. His curiosity led him to open every cabinet and drawer. A need for visual stimulation had him switch the lights on and off more than 100 times. He completed all of this while screaming in frustration.

I had nothing left.  I had tried everything with him. As our pediatrician entered the room, the tears poured down my face in utter exhaustion and mortification.  I was flooded with the idea that I was truly an utter parenting failure.

Grab Your Free Behind the Behavior Bundle!

 Grab tge ebook and the cheat sheet in one bundle!

Deepen your parent-child relationship.

Equip your child with  tools to navigate BIG emotions in a healthy way.

Empower your unique child to live a life of confidence and purpose.

Create peace & joy in your home and ENJOY your child.

Perspective Shift on Discipline, Part 1

Perspective Shift on Discipline, Part 1

special needs parenting, moms, support, meltdowns, tantrums, adhd, autism

In the past five years, God has taught us so much about children with special needs. I now realize our culture’s desperate need to develop a perspective shift on discipline. It is critical that we begin to view the term discipline not from the perspective of punishment, but of teaching.

In order to effectively discipline our children, we as parents must begin to recognize our role as the teacher of our children. We must think about our long-term goals for our children as they mature into adults. What do we want for them and from them?

It is generally understood that parents desire for their children to grow up to be healthy, happy and well-adjusted adults. As believing Christians, we desire for our children to have a solid faith in Christ. I specifically desire for my children to understand their identity in Christ and live in that freedom.

The concept of being an intentional parent. is pretty popular within my own circle of moms. However, what does that mean exactly? What does being intentional look like? Over these last several years, I have learned that to be intentional as a mom, I must understand my goals for my children.

With an end goal in mind, I am better able to respond to the day to day issues as opposed to react out of emotion. That clarity brings freedom and reduces confusion in tough moments with my children. I wish I could say that I’ve always parented through this lens of clarity. Sadly, this is not the case.

For access to the entire ebook for FREE, Embracing Parenting Imperfection, the journey that God used to lead me to a complete shift in perspective about effective and appropriate discipline click here.  

Grab Your Free Behind the Behavior Bundle!

Grab the ebook , the meltdown cheat sheet & 2 video teaching modules in one bundle!

Deepen your parent-child relationship.

Equip your child with  tools to navigate BIG emotions in a healthy way.

Empower your unique child to live a life of confidence and purpose.

Create peace & joy in your home and ENJOY your child.