ok. I have given you the back story to our journey so far. I could have written thousands of posts about what we have endured so far. But I kept those short and sweet.

Until now.

This post is going to be raw, uncensored, probably cause some judgement from the peanut perfect parent gallery. But this is the living h** I call life.

Every morning I wake up, and I am afraid. I want to roll back over and go back to whatever dream I was having that did not involve my life.

I wake up, and I am afraid. What is today going to be like with her? Am I going to be lucky and have a good day, and maybe we can leave the house and go do something?

Usually, my questions are answered rather quickly as I can hear her yelling and throwing things in the kitchen. So I get out of bed, and attempt to diffuse the situation knowing, its probably going to get worse. But if I plan to save whatever she is doing from being broken or thrown everywhere I have to go intervene.

While she is screaming at the top of her lungs, I am also holding back the urge to scream. I just want to one day have my coffee, make my kids a fun pancake breakfast, and hear giggles….

This is usually how the day goes. All. Day. Long.

If she asks a question and I give an answer she doesn’t want, its immediately followed by screaming, door slamming, her calling me a bad mom.

The worst part is these tantrums happen everywhere. Outside. In public.

It brings me so much anger and anxiety.

I am angry because she does not have the capacity to understand reasoning. I can try and explain and talk to her until I am blue in the face. Her brain is so inflamed, she just doesn’t get it. She cannot comprehend why, or how, or why not. Usually her response to me trying to explain is from left field irrelevant to what is even going on. Its exhausting

I am angry because we cannot go anywhere. We cannot even go out into the backyard without a full blown screaming, yelling, full body thrashing, episode, if we tell her she cannot do something she in her mind is set to do.

When we lived in the country this was not so bad, we did not have neighbors close enough to hear or watch.

We recently had to moved due to some health concerns at our old house. A house I loved. A neighborhood I loved. A school district I loved. But again. PANS wins, PANS got to take something else from us.

Now that we live in the city, its basically pull your chair up to our lawn and watch the show unfold.

Ive been told how embarrassing it is for others when this happens in a public setting. I mean do I even apologize for that? How do you think I feel being IN this scenario? Me trying to scream over my child who is screaming, and I am basically at my wits end by 8:30am? Or do I ignore it, and the people watching still placing judgment that I just need to get my kid under control? Yeah super embarrassing for you. Try living in this hell and see how you respond when you have reached your peak point of exhaustion and you know it wont end. Because this isn’t and every once in a while scenario. We will go home and endure about 3-4 more before bedtime, some lasting hours. I am so glad all you can see is your feelings instead of understanding, MAYBE just MAYBE, my emotions spilled over and you just so happened to bare witness to it all and get a glimpse of our hidden reality.

I promise if there was a book written on “how to parent your child with neuropsychiatric illness without loosing your sh*t yourself” I would have read it… but there isn’t … every single PANS/PANDAS parents have the same question “how do we get through this, how do you parent a child like this”

because our reality is… our kids CANNOT CONTROL THIS! Most kids have absolutely no recollection of the episodes, they are gone, you can see it in their empty dark eyes, they have ZERO idea of their response…. And that is the most infuriating part of this illness… You cannot attempt to calm, or rationalize with something that isn’t even present to rationalize with.

When your days are filled with constant battles, constant screaming, constant arguing, constant meltdowns, constant over the top reactions in 0.1 seconds… I do not think the calmest parent in the world wouldn’t have a moment where they do not snap.

A person can only handle so much before they loose all sense and composure… they named a show after it called “Snapped”

Anyways I got off track a little bit.

After a while, you loose friends, your marriage crumbles (the question of divorce sadly is a weekly talk for us) your other children suffer. People lecture you on how you need to handle things better. You stop being invited to things and then given the most ridiculous excuses. You watch from facebook, all of your previous friendships going on, doing things with other friends, being happy, enjoying life, their kids playing with each other because your family has now been limited to private gatherings only. It is the loneliest life.

You end up alone in this hell.

You end up resenting your PANS child. I know that is awful to say as a parent. But, if it weren’t for PANS you would be living a normal life instead of this prison and everything that comes with it.

Its like the 7 stages of grief over and over again.

1. Shock and Denial- denying that this is forever our life, pretending it doesn’t exist. I will wake up in the morning to a new life
2. Pain and Guilt- Did I wait too long to get a diagnosis? Is this my fault? Did I do this to her? Was it something from my pregnancy? What could I have done different?
3. Bargaining and Anger- Pleading with God every day to make this stop. Asking what you did to deserve this? What your child did to deserve this? Why? Why does God hate me so much? Why cant he make her better? Why would a loving God give us a life like this? What have we done to make him so angry with us he has to take it out on our daughter
4. and so on and so on

The depression I have faced from this has been, awful. I cry all of the time. To be honest if I am not yelling I am crying. I do not even want to be around myself. I put on this fake smile and laugh, but on the inside, I am broken into a million pieces.. And the worst part, the hits from people just keep on coming. Its almost as if I could start handing out numbers for people to tell me what I am failing at today, so I can add it to the list of failures and things I am not doing right.

Isn’t that sad. All of the joy in life has just been sucked out. Its absolutely empty. When your days are filled with so much anger from your child, it leaves you in a constant state of exhaustion to feel anything else. You are afraid to feel joy because you know, its not going to last. You know in a matter of minutes the joy will end and be overshadowed and end. You are constantly afraid of when the next time PANS shows its nasty face.

I find myself angry, almost all of the time. I am angry that I have lost so much. I am angry how much is taken away from my other two children, not only her childhood has been taken but also theirs. All they see is yelling and screaming, and an exhausted mom who cries, a mom who also ends up yelling herself because she just cannot take it anymore. Because we cannot do anything outside of the house out of fear, they miss out on opportunities.

It sucks.

At night I am often left guilt ridden of the day. Did I handle this right? How can I not yell tomorrow? How can I not loose it myself? How can I be more calm? How do I love her? How can I just love this life we have been given? How do I feel thankful for THIS? How…

how do I continue to have the strength to go on?

When you have to listen to your 8 year old talk ill of herself, saying she doesn’t want to be in this world, that she has no friends, that she hates herself, she is alone, all she wants is a friend but they hate her because she is bad….

that hits you into a part of your soul you never knew existed.

how do you fix that? how do you make that better when everyone has abandoned you? How can you say you have so many friends who love you, when the reality is, everyone has abandoned you and her. Everyone has abandoned her because she is different. Because she cant play like the other kids, because she doesn’t process things like normal functional children. Because she is a little behind on her maturity… because she feels so deeply sometimes she explodes.

IT KILLS YOU! Because you cannot fix it no matter how hard you try. When you witness other little girls just deciding not to play with her, and the smile you very rarely see diminishes to anguish and sadness…. let me tell you that is something NO parent should ever have to bare witness to.

When she begs for a friend to come over, and you have to make up an excuse they are busy because you know, those “friends” arent her friends because you have seen how they treat her… it sucks

When you cannot bring yourself to plan a birthday party she talks about having, because you cant bare to see the disappointment when none of her friends show up.

this disease has taken so much.

The truth is, I’m sinking. I am so full of grief, anger, sadness, anxiety, jealousy. Its consumed me to where I am not even sure I am a person anymore. My joy is robbed. Exhaustion has taken over. This is my normal. This is my life.

This is the dark side of PANS

The appointment came and went. I was at peace. The knew without a doubt she fit the PANS criteria, but there was a lot of testing needed to secure the diagnosis.

35 various blood tests were performed. This was the most thorough evaluation we had. The listened to me and validated my concerns in knowing that this was not a psychiatric illness. They agreed she was sick, her body was suffering. Her brain was suffering.

When I received the phone call to go over her results I felt I could cry. I was right. My child has PANS. Finally, I can put a name to all of this madness that has consumed my life. There is something wrong with my child. She isn’t crazy. My Child is not crazy.

The blood work showed us a lot.

It answered the question of when this started. and the timeline is an absolute fit for what the blood work answered.

Remember when I said she was 18 months and woke up a completely different baby.

Well, around that time she had contracted normal childhood viruses, a skin rash called Roseola, and at the same time hand foot and mouth.

Now.. what does that have to do with PANS

A faulty immune system.

Her immune system system decided it was going to respond with something known as “molecular mimicry” this is when your immune system mistakenly attacks healthy normal body tissues, instead of only the virus… and because of hour our immune system works, it creates antibodies that “remember” this… so it happens over, and over, and over again

Now, what does this have to do with ongoing psychiatric illness?

Well, that healthy tissue the body is attacking, is their brain.

Yes, you read that correctly. Her body is attacking the basal ganglia of her brain each and every time she has an immune response. The area of the brain responsible for movement and behavior.

What does this mean… Nothing in the grand scheme of things. There is no magic fix. You cant take a pill and make it go away. There is no therapy for it. Its going to be a lifelong battle to keep her immune system under control. A life of fear that every time she gets sick we will relive this hell over and over and over again.

How else has her body been impacted? Well since your brain is your powerhouse to all the systems in the body, a lot of other symptoms have been effected. Her thyroid is inflamed. Adrenal system is shot (let me tell you living with someone who is constantly in fight flight mode is exhausting), many vitamins and minerals are depleted causing more behavior issue on top of brain inflammation.

Her brain is literally on fire all of the time.

Oh how I wish a magic pill could fix this. We have a big box of pills to hopefully help us manage the symptoms to hopefully one day see our girl again. To break her free of the prison that is holding her. For her to not have to suffer any longer.

My child has PANS

And this is our life

Things seemed to have been getting better, or I should say the beast had gone to bed.

The holidays were approaching, I had found a doctor to evaluate but it was expensive. We had decided to try some of the common remedies used on PANS kids while we waited. Things had gotten better so I let the normalcy take over. No more appointments, no more evaluations, she was acting better, why ruin a good thing. I selfishly just wanted to enjoy the holidays as a normal family without anything ruining it.

Joke was on me.

Halloween came, my girl wanted to be wonder woman (how fitting) Her hair had grown back in and was getting long, it was beautiful. We went trick or treating, and I remember telling my friend we went with how things had been in the past compared to now, and how I hoped it was a memory. Maybe she didn’t have PANS after all. Maybe she had finally grown out of whatever was going on, and we found the right combination of meds for her. She was thriving AND HAPPY!

Not long after that she became sick with a stomach bug…. and immediately following…. my child woke up a different person… again

I remember my mom texting me, she was pulling again. My heart sank into the pits of my stomach. I said to myself “ok, we can get ahold of this before it gets too bad”

How wrong I was.

Within weeks, she was hit with the flu, a cold, and the stomach flu… and within those weeks, she had pulled so much hair, the entire side of her head was pulled to the scalp. She had stopped functioning. Her eyes dilated and empty again. The tremors back full force. But this time was different. This time was one of the worst. She couldn’t go to school, or dance. She had lost all control of her bladder function and was wetting herself. She had started hoarding food (and folk let me tell you, finding week old cereal bowls under the bed is enough to make anyone go crazy)

I finally pulled the trigger and called the specialists office, knowing again I was searching for a diagnosis they would probably tell me wasn’t her and they couldn’t help her. More money that was spent and lost. We had already accumulated so much debt on hope and answers. Trying this remedy, various programs for “brain cognitive repair” costing thousands of dollars. We had become behind on bills, our mortgage. And here I was making another appointment on hope costing hundreds of dollars….

But what choice did I have?

during the two years of various diagnosis I had come to a cross roads.

Do not ever let a doctor tell you, that your mothers intuition isn’t real. We were blessed with this intuition for a reason.

We had endured evaluation after evaluation. I had a list of various opinions and diagnosis’ a mile long it seemed. She did not fully fit autism, nor sensory processing. I knew she did not have bi-polar disorder. I wasn’t in denial, but I knew my child was not crazy and I refused to accept a diagnosis I knew in the bottom of my being was incorrect. I even had a psychiatrist tell me I was wrong and to stop researching, and that ended in be walking out of an appointment.

I thank god every day for our pediatrician. He even disagreed she wasn’t any of these things. It was something else and we were not going to stop until we found out.

I remember walking into his office almost weekly with a stack of possible diagnosis from allergies, to celiac, to possible vitamin deficiencies, and he tested for them all. And every test came back normal. She was going between being fine, to not it seemed every 3 months. It was like a cycle and neither of us could put a finger on it. He had scheduled us to go down to cleveland clinic after he had a conference with one of their neurologists. He and I both agreed, it was something neurological. Something in her brain just was not working and we needed to find out what.

I remember posting about this on my facebook. I had become open about it, I was tired of being prisoner, tired of the assumptions of what was going on, and tired of putting on this fake family persona. It was exhausting and I was alone.

I remember a friend commenting about PANDAS.

yes, my first thought was “what does a bear have to do with this?” but, I looked it up, I was grasping at straws at this point.

Pediatric Autoimmune Neuropsychiatric Disorder accompanied by Strep

What? She had never had strep though, but she matched every single symptom listed. The more I read, the more I said “this is my child” I even remember telling my husband to look at this. At this point he thought I was loosing my mind and in denial about her mental health, but he had learned to just go along with it because he wanted her better just as much as I did.

I emailed her pediatrician the next day about his thought on PANDAS, and his response was “ABSOLUTLY, I absolutely believe in this diagnosis, why hadn’t we thought about this before”

*not that he is not a smart man, he is BRILLIANT, I think because she had never had strep it was an out of sight out of mind. We had just started realizing her cycles of behavior were related to sickness*

WOW! Something that fit! and let me tell you, my mothers instinct was this was it. This is the piece to the puzzle I have been searching for

BUT…..

Ah, as with any crazy disorder, there were many doubters in the community.

See, PANS/PANDAS is not classified as a mental health disorder. It mimics a severe psychiatric disorder, but it is actually an autoimmune disorder exasperated any time the immune system is activated.

I got on facebook and I joined all the groups. Our pediatrician fully believed in this but he had no idea how to diagnose or treat.

When I joined the groups, the overwhelming amount of support. Knowing I wasn’t crazy. I was no longer alone. I found a safe space to cry and be honest about our life. How hard it was. How much I hated this life.

But most importantly, I found our saving grace. A leading PANS doctor right here where we lived.

FINALLY someone to help my little girl!

now a bright 5 year old, we had enrolled our girl in preschool.

The year started off amazing, she was doing so well, learning, laughing, playing! Doing all the things a preschooler should be doing.

And then one morning, she woke up completely different.

When I say different. I mean she was no longer present.

I remember brushing her hair, and finding a bald spot. And then another.. and another

I went into her room and I had found handfuls of hair that she had pulled out of her head. My beautiful baby girl was pulling her hair out, and it wasn’t a little bit, it was a lot.

Within that same day, she started having fits of rage. Not the normal tantrums but absolute rage.I remember she was becoming almost catatonic. She would start lining up her toys but unresponsive to anything else around. And if one of the boys happened to move something she was working on during these episodes she became violent. She was hurting herself, her brothers, and at one point she stabbed me with a pen, yes my 5 year old took a pen and shoved it into the skin of my back because the pen wasn’t working. I remember that night I texted her pediatrician out of fear. How was I so afraid of my child, afraid that if she could stab me, what was she capable of doing to her brothers. She had already choked our two year old what else was going to happen.

I remember I felt scared, ashamed, alone. This world is so PC when it comes to mental health, let alone mental health of a child. I didn’t know who to turn to, who I could confide in without judgment. What did I do wrong? Was I a bad parent? Was this because she was a preemie? Did I do something wrong in my pregnancy?

The guilt and shame to this day is something that has never left.

I remember during these episodes of rage, it was almost an out of body experience for her. Her eyes became dilated and empty, and when I say empty, when you looked into her eyes it was as if nothing existed. These rages lasted anywhere from 5 minutes to hours. Kicking, screaming, growling, uncontrolled and unwarranted.

After the pen incident I had texted her pediatrician and he told me to get her to our children’s hospital immediately. Now at this point in our life we were also dealing with some other things.

Remember a few paragraphs before I felt I couldn’t talk to anyone. Well, I say this lightly but some family members who thought they knew what was happening made some pretty horrific assumptions and allegations and had anonymously threatened to call childrens services on me for abuse and neglect. At the time I had no idea who had made these threats. And, sadly these people had a lot of my family members believing these allegations. So, not only did I have the stress of finding out what the heck was happening with my child and managing all of the things going on. I had allegations of neglect, and abuse, because of assumptions based on what they saw for a brief moment. But that will be another blog post.

I remember sitting in the ER with her. And we finally got evaluated by the psych team. I was so scared they were going to take my daughter away from me. I couldn’t explain why this was happening. I had no answers. I was pleading for help and to know why this was happening. The seemingly had no more answers than I did. All we could do was schedule an appointment that was 3-6 months away and that was for an urgent appointment (if this doesn’t tell you the crisis for pediatric mental health I don’t know what does)

So we waited and waited. Meanwhile she was getting worse. Her pediatrician was doing the best he could to manage her symptoms but even he was at a loss. We explored private psychiatrists, everything. With no answers and more bottles of medication.

During this time, she had also developed tremors, her cognitive skills diminished, she had pulled her hair out to the scalp, she became fixated on how clothes fit and the type of fabric she was wearing. She could no longer withstand loud noises, or being in a public setting without become so over stimulated she melted down.

Still no answers. We were evaluated for autism, sensory processing disorder, oppositional defiant disorder , and then they finally wanted to diagnose her with Bi-Polar disorder

But my child wasn’t crazy

Ah, where do I begin. For starters I am not an english major, so be prepared for grammar mistakes and forgive me now.

My daughter Mckenna will be turning 8 years old at the end of July. She is a smart, spunky, miracle.

I remember looking at that test, and immediately thought of all the things parenthood would bring. All the things I would get to experience as a mom and all the hopes and dreams I had for this little tiny being inside of me. I would daydream of all the things we would do and it was filled with so much happiness, laughter, adventures.

Well. Sometimes dreams are just that, dreams.

When Mckenna turned around 18 months old things drastically changed. My baby girl who once laughed, played, and seemed normal had changed.

She became different. She no longer played and became increasingly agitated and angry. Now me as a first time mom thought this was normal. But compared to other little ones her age I knew in my gut something wasn’t right.

As she became older things became worse. She would scream in fits of rage, pull her hair out, bite herself, throw things. It became unmanageable. She didn’t know how to play with other children and she wasn’t able to do things appropriate for her age. She had also abruptly stopped sleeping at night. This was not an inability to fall asleep. This became and inability to sleep all together.

When she was two and a half we welcomed our second child. We had decided to go to a new pediatrician and I remember at my newborns very first visit I broke down in front of him about Mckenna and pleading with him to help. He looked at me and said “Do you know what my passion is? I am a pediatrician by trade, but my passion is helping children with behavior issues and getting them better. I want to see you back here with her in three days” and ever since then, this man has been our angel in disguise.

His initial diagnosis was ADHD, but even then he was honest he didnt think that was all that was wrong. But with her being so young, it was hard to really understand what was happening. He wanted to get her brain “tuned in” so we could see what else we were dealing with that stuck around. We started her on medication for ADHD and we started seeing improvements. Life was manageable again and somewhat happy. We started seeing small glimpses of our little girl again and it gave us hope things were going to be easier again.

but sadly, that did not last long…..

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