Resurrecting Noah

Monday October 15^th, 2012 I sent my perfect happy genius third grader to school, the child that was returned to me was not my own.  I opened the door to a child who’s eyes stared half empty, half scared, face expressionless.  I bent down to hug him, he did not hug me back. He pushed coldly past me and went straight into his bedroom.

This would be the first of many times he did not hug me back.  Most of you know Noah, either by meeting him in person or my accounts of him.  He is the very personification of his name.  He is loving, kind, gentle, with a laugh as joyful as a bubbling brook.  He has never killed a bug, he loved to chat up strangers, especially pretty girls.  So it was that a cold chill climbed up my spine, my mind was racing, and I wanted to vomit.  My worst nightmare had come true someone had taken liberties with my child.  Someone had touched him, I was sure of it.  I tried to swallow my panic as I hounded him with questions.  “Did someone do something to you today Noah?, Did someone touch you ? Did someone show you something inappropriate? Did someone make you do something you didn’t want to do?  Did someone hurt you?   Please tell Mommy, because it’s Mommy’s job to protect you, I will protect you, but you have to tell me who hurt you. Please honey, please tell me what happened today, why are you this way today?”  Silence.  He stared at the ceiling; he turned over and showed me his back. Oh my God, I don’t even have a name of the person that I must go choke the life out of when the school doors open.  When he showered that night I looked over every inch of him, looking for bruises, looking for clues.  I found nothing, except silence.

Finally, showered and settled into bed, I climbed in beside him and asked one more time for him to please tell me what was wrong.

I waited and waited, and finally in a small voice he whispered, “Mommy, I hear voices”.

Holy. S@#$. What?   No, no, no, no.  I’m Type A.  I had done the Punnett squares and family trees  before he was even born. I knew where THAT gene was, and there was no way he had it. No WAY. If there is one thing I can do is trace a gene through generations, hell, I could do that in my sleep. No WAY could I be wrong…..right?

I swallowed hard, and calmly asked what the voices said to him.  He would not tell me. Surely it was just his inner voice; he was confused, he had not yet learned that that little voice inside his head was indeed himself…right?  “Does the voice sound like your voice baby?”  No, he said. He told me there was more than one. In my head I cursed.  I asked him if they asked him to do things, if they told him to hurt himself or others.  It was yes, no and no, in that order.

My mind flashed back to my father telling me as a little girl to never place any sticker someone gave me on my skin.  I don’t know if it was an Urban Legend from the 60s and 70s or if it really happened that back in the day LSD was commonly applied to stickers and unwitting children may find themselves on an  acid trip.  So now someone has POISONED my kid.  And it just so happens his 3^rd grade teacher just mysteriously quit, without so much as a 7 day notice…..What had she done?

I took him to the pediatrician the next day.  I explained what happened.  He asked Noah some questions regarding improper touching, and then asked about the voices.  At the end of the appointment he basically concluded that when children get depressed, they can often experience a kind of disassociation that they process as “voices”.  “It’s probably ‘just’ depression,” he said, “a lot happened this past year, its hard on adults, let alone a child, just give him some time”.  I asked him to check for toxicity, drugs, heavy metal poisoning, in case someone had given him something, or he had unwittingly gotten into something at school.  After all, several kids in South Florida had been shot by classmates when the classmates decided to bring big brother’s or daddy’s gun to school.  Then there was the kid who’s family member had put drugs in his backpack, “by accident”….so who’s to say, someone didn’t give him something that looked like candy but wasn’t.

Toxicity report came back. Negative.  October was quickly fading, and my son was becoming a stranger.  He became obsessed with the idea that either his father or I was going to die.  He would ask me the same question over and over, “Do you think Im getting taller? Do you think Im smart?” harmless questions but over and over.   I kept an eye on him.  School work was still coming back normal, so I waited for the “depression” to lift.

The last day of October, Noah came home and told me that a man at school had told him that he knew where he lived, and put his hand on his neck.  WHAT.  I got on my knees to make myself his height and asked him to show me what the man did to him.  He refused saying, “Mommy, I don’t want to hurt you”.  I assured him he could not.  So he reached out his little hand in the shape of a “C” placed his hand across my throat. And squeezed.  It was 4:00. No one was at the school.  I called the principal, left a very colorful message and demanded a call back. Long story short, I was not satisfied with anything anyone had to say, we figured out who it was.  The man lived in the same complex, he was a security guard at the school.  A meeting was called. Long story short, he had removed Noah from the classroom because he had been crying about an incident where he felt he had been yelled at for something he didn’t do. He was inconsolable so as per school policy, he removed Noah from the room with the intention of letting him walk it off.  This is a large man, probably 6’5, with very large hands, it was not beyond the realm of possibility that in escorting him out of the classroom, if he had put his hand on the back of his neck, his fingers would have extended around his neck, and Noah in his state, perceived this man to be choking him. Anyway, beyond the shocking goings on, in the middle of the meeting this man says, “….he’s been running around here saying he was hearing voices for weeks.”  I was livid, this school called me twice a week to “remind” me of the latest fundraiser, but no one thought it was important to pick up the phone to tell me my son had been hearing voices for weeks.  It was around this time when we noticed Noah wasn’t sleeping very well….His normally amusing short stories had turned strange and dark.  His handwriting had changed, and he had become obsessed with stopping a boy named Giovanni, who was apparently hell-bent on preventing Noah from saving the world.  Giovanni was a real boy.

Soon we were looking for natural remedies to help him sleep, we bought Zarbee’s we bought Benedryl, we boiled teas, we took away sugar, but he fell asleep later and later….11, midnight, 2am…3am.  School was at 8am, nothing was working.  Exactly how much Benedryl was safe to give an 8 year old?

And so, in November, after a shift on my Internal Medicine clerkship  I received an ominous call.  An administrator from the school informed me that my son’s classroom had been, “evacuated”. I instantly think Columbine, but she continued, “Noah is having some kind of issue, he is screaming at the walls saying he is being attacked and we cannot get him to leave the room, we are calling SPECIAL TEAMS to assess the situation”.  I could feel my heart beating in my throat. Instantly in my mind’s eye I saw a team of men clad in black uniforms in black Kevlar toting black firearms pouring out of a black truck with the word S.W.A.T written in white letters across the side.  I saw them setting up position, training their sights on a eight year old kid, my eight year old kid, who had never hurt anyone.  I asked her if she really thought all that was necessary. Was it really possible that the entire administration could not handle a 70lb kid? I asked her to give me a 20 minute head start.  I was an hour away, but I knew I could do 90mph and get there in half an hour. She said yes, and I tore off down the highway, managing to call his father to tell him to get himself down to the school.

When we got there he was sitting at a small table playing quietly, oblivious to my presence as the teacher and an administrator debriefed us.  I walked to my son and asked him if he would come with me, he calmly said yes, and asked if someone was coming to help him make his visions stop.  We were lead to a gray room with a long oval fake mahogany table.  At the end of that table sat “Special Teams”.  A 6’3 thin man of caramel complexion, and  a limp.  No Kevlar. No SWAT team. No snipers.  Just one man.  He asked to speak with Noah alone.  The result of this was two choices.  He offered that we put him in my car and drive to the nearest hospital (read…mental hospital), or if we refused he would call the police and they would take him, but if the police came, he said,  he would be handcuffed and put in the back of the cruiser.  My EIGHT year old, handcuffed.  You have got to be kidding me, this was outrageous.  My child had never harmed anybody; he had never even killed a bug.

He spent three nights in an ugly dingy facility lit with fluorescent lights.  It was hideous, but the nurses were kind, and a bit incredulous to find him there. Nurses and patients alike were drawn to him.  I was sick.  I was sick to my stomach that I was being required to leave him there.  Not able to make sure he brushed his teeth, or flossed, or put on his pajamas, nor tuck him in before he closed his eyes.  I did not close mine.  The psychiatrist, whom everyone assured me was very good, diagnosed my A+ student (who by the way, outperformed his school district on his benchmark testing and had learned to play, keyboard, recorder, violin and percussion and voice, all in the summer past) as having PDD.  Autism he said, and anxiety.  So…my child had suddenly turned autistic.  That was his theory.  I called BS, but I hadn’t come up with my own theory just yet.  He was released at the end of three days and prescribed clonidine.

December, he continued to decline. He kept insisting that people were in costumes.  No one was who they said they were.  He could no longer watch television, nor play video games, they bothered him and he seemed to obsesses over them long after he had stopped playing.  He began to use bad language in his speech and writing, completely out of character.  The repetitive questions remained.  He kept talking about “fantasy visions”.   I started doing my own research.  What looked like autism but wasn’t? what caused obsessive thoughts? Why would this suddenly happen.  The last week of December, he told me I was not his mother.  I must confess, I lost my composure, and I sobbed uncontrollably.  I did however, have a theory.  I made an appt with a neurologist, but the soonest opening was in May 2013.  This was urgent; we would not make it that long.   January 2^{nd 2013}  I took him to the pediatrician.

I think my son has PANDAS I said.  He replied that he had no idea what that was, and asked me to explain as he watched my son out of the corner of his eye.  Noah appeared to be delirious and was cursing underneath his breath.  I explained  PANDAS, quietly sobbing that I did not know this changeling. This was not my child. He was very concerned, he went quickly into his office and I heard him call the neurologist, explaining that we had an emergency situation, encephalitis or meningitis.  He told me to get to the emergency room ASAP and he would have us admitted.

The ordeal was terrible. They took some blood, I asked for ASO titers and antiDNase, CRP and ESR. On day number two the neurologist came.  I asked her if she thought he might have PANDAS, if she’d ever heard of it.  She spat back in her Russian accent, “My dear, you need to stop being ridiculous. There is no such thing as PANDAS”.  At some point Noah informed everyone that we were not his real parents,  that we in fact were impostors, and we had his real parents tied up.  He had to save us (real parents), and the only way to do that, was to kill the fake ones.  Well, that landed him in the psych ward for three weeks.

For three weeks I was only allowed to see my child for two hours a day, from 6-8pm.  It was a kind of hell I cannot even convey to you on paper.  You would have to be inside of my body to feel what I felt. To leave him in a place, where he is the smallest child, without me there to protect him was devastating. I will never as long as I live, forget a particularly painful goodbye.  He knew it was 7:58, and that we had to leave him.  I squeezed him tight and whispered, “I love you, I will see you tomorrow, nurse so-and-so will watch over you.” He cried, I teared up, but I ushered him to the vitals room and as soon as he turned his back I headed for the door.  I had just rounded the corner of the nurses’ station, when I heard it.  Slap-slap-slap-slap-slap.  Running.  I heard his socked feet hitting the tile, a cry spilled out with every footfall.  I knew it was him.  He was trying to catch me before I walked out the fortified doors.  I turned around and he ran into my arms sobbing.  We squeezed each other so tight. Everyone stood motionless, silent.  And the heaviness of that excruciating sadness left not a dry eye in the place. One of the sweet nurses came to our rescue.  She told him I’d be back tomorrow, to come have his bedtime snack.  She gently peeled him off of me. I punched the exit button, trying to get the hell out while I still had a little composure.  The other parents walked behind me, but there was only one elevator going down to the lobby so we all piled in.  All of a sudden I could not see the numbers on the elevator panel. I could not find the “1”.  I gave up and dissolved into tears. I think they had all been waiting for it. A woman I had only seen at visitation hours with her own child suddenly enveloped me in an embrace as my knees gave out underneath me, and the tears came like a river. The pain was crushing.  So it was every day, I dragged myself out of bed, called the nurses’ station to talk to Noah, went to rotation, called the nurses’ station to check in, visited from 6-8, missed class, and repeat for three weeks.  Luckily they did not kick me out of my rotation; my coordinator was covering for me.

At the end of three weeks he came out on a psychotropic drug.  We were told he had psychosis NOS.  From January 20^th til March I watched what the drug did to his body.  I was angry.  He was inconsolable in a dressing room after seeing himself in the mirror. Why was his body lumpy? Why did his body look like this? Why wouldn’t it stop he asked me, and dissolved into tears as yet another shirt and another pair of jeans didn’t fit. My fit 8 year old had now gained 30 pounds.  I cried with him.  I wanted him off this drug.  It was causing him to develop metabolic syndrome, and it was making his mind slower, it was becoming hard for him to remember what he was reading.  He began to hate reading.  Summer came and we put him back in the same music camp he had been in the summer before. He did not remember his teacher.  And worse, he now had developed stage fright.  He could barely perform. By the end of July though,  he was doing great, I had asked the psychiatrist to lower his dose of drug because according to the testing I had done, he didn’t have psychosis.   What he had was ADHD non-attentive type and Anxiety.  Even with this information, she refused to grant my request.  As a matter of fact, she told me “he will need this medication for the rest of his life, and maybe,” she said, “after you go get a second, third and fourth opinion, and every doctor tells you the same thing, maybe THEN you will finally accept the truth of the matter,” and effectively kicked me out of her office.

Then in late August 2013 he developed a sinus infection, and all the progress I had seen went down the drain.  But then I remembered this had happened before.  Once was a coincidence, but twice was a pattern.  He had a sinus infection for months before I realized it the summer of 2012, and not long after, he had gotten sick with is “fantasy visions”.  My intuition was nagging me.  What if the symptoms were not all separate things?  What if it was all related?  What looks like schizophrenia but isn’t? And what did schizophrenia have to do with sinusitis?  I was back to square one.  The only thing that made sense was PANDAS.  I came across a PANDAS website.  They had logged 200 cases of PANDAS, and described onset and associate symptoms.  I kept seeing the same thing:  Sinusitis, OCD, “bad thoughts”, tics, compulsions, rages, insomnia, irrational fears, and change in handwriting.  This sounded 90% like my child.  But who would believe me?  I had already been told I was ridiculous, that it didn’t exist, but I was looking at the proof.  I took him back to the pediatrician, who although he was not versed on PANDAS, he was willing to give me a trial of high dose antibiotics (as per the research I had done, this might help).  It didn’t help.  I started giving him ibuprofen. And almost magically, he would have moments of clarity, where the Noah that I knew would shine through, but only for an hour or so.  The fact that he responded that way gave me courage, because that result is specific to PANDAS.

By September, he had slid further away from reality.  He seemed to spend almost all of his time in his fantasy world.  His “imaginations” as he called it, were bothering him.  Now he was afraid to step into rooms alone.  He would not enter a room unless I went into the room first.  He would not use the bathroom unless I went in with him.  He could not stand for the TV to be on, it bothered him when his friends came over to play video games.  He had trouble having meaningful conversations with anyone, and he could no longer finish his work at school.  As a matter of fact, the school called us every other day to come pick him up.  He would howl with frustration if he got a question wrong, he was screaming about his bad imaginations, he was throwing himself on the floor and refusing to get up, he was falling asleep in class. By October 2013 he had been absent more than present. I was going to the school to pick up his lessons and helping him with homework after a 10 hour rotation. Everything took 5 times longer to do than usual.  He could still get it right, but his focus was horrible, reading was a disaster.  And he had taken to asking to sleep in a “fortress”, ie, a tent made of bedsheets and such had to be constructed over his bed so that he could crawl in it and hide from the world.  He would stay there all day if you let him. It was the only place where he would not dissolve into screaming. “why can’t you make the bad imaginations stop mommy? Why won’t Jesus help me? Why won’t anyone help me? I can’t take this anymore! I don’t want to live like this anymore mommy?”  Eventually he would just scream “WHYYYYYYYYYYYYYY?????!!!!!”  Every 6 minutes.  I could always tell when a fit was coming because he made a strange noise in his throat, then it would start all over again.  He had developed tics, where he would repeat words, or motions.  He had picked all the eyelashes out of his right eyelid.It was so bad that I wanted to die.

Every appointment with a specialist I made was so far in advance that it was of no use.  Finally, after calling to check on him after yet another day of being pulled out of school, I heard him screaming in the background, he was being tortured. Whatever it was…it couldn’t wait.  His father and I drove him across county lines to the best hospital I knew. Miami Children’s Hospital. We pulled up to the ER entrance.  Noah JUMPED out of the car and RAN into the hospital.  He knew that here someone had to know how to make his “bad imagination” stop.  We stayed three days.  I met an amazing woman, Judy Husey who prayed over me and Noah.  Her words gave me a renewed strength. She told me, amongst other things, that God had already given me all the knowledge I needed to save my son, that as his mother, no one would know better than me. Blood was drawn, tests were run.  They listened to my story.  I said PANDAS.  They said, ok.  They gave me a different antibiotic to try, and it was like magic.  On the second day, My Child reappeared!  He held conversations, he asked me about my day, he made jokes, he laughed, he smiled, and then day 4, my baby was gone.  There was no doubt in my mind, this was PANDAS.  He needed IVIG and he needed it now before he did something to make it stop all on his own.

I called to make an appt for the procedure, but it was for a week later.  We were not going to make it a week.

That’s when I packed up Noah’s clothes and drove him back to Miami.  I re-presented his case. They sent many doctors to his side.  Geneticists, Infectious Disease, Neurology, Psychiatry, you name it he had it done.  Because they, like I, had decided the facts did not add up.  One the third day, a doctor, who is also an associate professor, came with a group of residents to hear my story.  At the end of it, he turns to all the residents and says, “THIS, is a classic case of PANDAS”.  He shook my hand, and left.  Not long after,  the order was given to begin methylprednisone treatment for five days.  And today, he received IVIG.  After the first dose of prednisone his tics reduced, after the second dose, he grabbed an activity book and solved puzzles, mazes, cracked symbology codes and played tic tac toe and won, all things he couldn’t have done 12 hours earlier.  It was like watching that movie Awakenings with Robin Williams.  I sobbed like a baby. The nurses were confused…”um…are these tears of happiness or sadness” one nurse cautiously asked.  “Happiness”, I managed to utter as I walked out to go cry in peace.

Psychiatry took my son off of the psychotropic drug.  Instead they are giving him something for the OCD, which is a symptom of PANDAS.  I’m hoping that with the IVIG, that too will be a thing of memory.  It will take three weeks to see his recovery result.  We go home tomorrow, November 7^th.  In the meantime, all the tests they ran will be coming in next week and hopefully we can find what triggered this.  The most common triggers are strep infections and mycoplasma infections (often causing sinusitis).

So, what is PANDAS.  I could tell you or I could show you.  I suggest you YOUTUBE Saving Sammy.  But to tell you in short it is this.

Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep, it was “discovered” in the 1980s, so it’s a relatively new syndrome.  It’s just called PANS if the strep cannot be found.  Essentially what happens in some children is that the immune system gets super activated destroying the strep or mycoplasma ( fyi, LYME disease has also been implicated in this syndrome). The problem is the proteins that cloak the strep bacteria are similar to the proteins found in our brains/cns, so long after our immune system has defeated the offending agent, the antibodies attack the brain, making it “an autoimmune disease”.  This can cause OCD, irrational fears, tics, separation anxiety, ADHD, autism, insomnia and rages.

Sadly, this looks exactly like mental illness. I was not willing to lose him. The prospect of having my only child committed to a mental institution for the rest of his life was beyond unbearable.  At the beginning of this horrific journey we had been told he was ill and would need medication the rest of his life, and likely be in and out of mental institutions for life.

My last drive to Miami Children’s Hospital, I sat waiting at a stoplight.  It had become so clear now.  All the horrible things in my life, all the hard things I have endured prepared me for the fight of my life.  If I had never gone to medical school, I would not have known enough to save my child from a lifetime of mental illness.  Had my father not raised me to fight and to question everything, my son would be on psychotropic drugs the rest of his life. This was not to be his fate.

Noah was saved, but what about all the other children locked up behind reinforced doors on psych units right now who are simply suffering the ravages of an infection?? 1 in 88 children, and 1 in 54 boys are diagnosed with autism now.  How many of those cases of autism….aren’t really autism? My pediatrician had never heard of PANDAS.  Has yours?  If that neurologist had never uttered those fateful words “PANDAS DOES NOT EXIST”, my child would not have suffered the way he did for over a year.  He would never have seen the inside of a psych ward.  I would not have spent months wanting to die.

At the end of an interview with Sammy and his mother, Sam says he doesn’t even remember being sick.  I think he’s an engineer or something at a big name college, I forget the details, but it gives me hope that Noah will regain everything that he lost.  I plan to see to it.  I also plan to educate the public regarding this devastating syndrome, starting with his school.

Please check out Pandasnetwork.org, educate yourselves, and spread the word.  I plan to write letters to all the doctors and psychiatrists that misdiagnosed my son.

There is so much more to be said, but I’m already at seven pages, its not my best writing but I considered it more important to get the story out than to edit for stylistic mistakes.  I hope this was enough to get the word out.  God bless you all, Trust your Instinct, and Hold your Children tight.

Love,

Phoenix