Children with Neuropsychiatric Disorders- My Daughter's Story

Hello readers! Happy Monday. I thought I would take some time today and tell our family's story. Fair warning, folks! Might want to buckle up, its been a bumpy ride!

If its helpful, the ending is a fairly happy one, so far. But life hasn't always been this way.

You always want the best for your babies. I could have never anticipated the future.

When I was a kid, I wanted kids. Maybe because I was an only child. I decided that not only did I want kids, I wanted multiple so they wouldn't be lonely like I was. So, on a cold, blustery day in January (almost 16 years ago now) I experienced the first of a series of "happiest" days of my life. My oldest was born. She was beautiful! She was a vision! She was mine. After miscarrying the year before, I was particularly careful with her. I was afraid of something, anything, bad happening to her.

What I wasn't expecting was the "bad" happening some five years later.

Even though we worked hard, finances were always an issue. We moved around a lot in the early years and during that time was when we found THE apartment. The CURSED apartment. The apartment I wish we would have never moved into.

I was afraid of something, anything, bad happening to her.

What we didn't realize was that this apartment was riddled with black mold.

There was black mold in the laundry room, and in the vents. We were on the third floor and the ceiling had leaked during a prior resident. You could see where it was patched. Little did I know what dangers lurked there.

Mold is not something to mess with. We have learned the hard way. It is toxic to your system. It is a hazard to breathe. But, most of all, it can mess with your brain.

We lived there for two years. We signed the second lease in June but by that September, our never ending nightmare was to begin. It started with a cough, fever, and sore throat. By the time it was over my daughter was a walking, screaming, obstinate stranger of a child who was a shadow of her former self.

All three of my kids (and I am now pregnant with my fourth) started having strep throat. I would take them to the doctor and get antibiotics, give them that round, and within days of finishing they would be sick again. Twice a month from September until January I had them into the doctor's office.

It started with a cough, fever, and sore throat. By the time it was over my daughter was a walking, screaming, obstinate stranger of a child who was a shadow of her former self.

My oldest, then in Kindergarten, was having so many absences. Well, you can't send them when they're sick, but even when she was well she was starting to refuse to go to school. She couldn't focus- I'd drop her off for breakfast and then I was being contacted asking why she was late to class (you tell me?). She couldn't finish her work in school, so she became the first Kindergartner that I know of to bring home homework. She couldn't sit still at all.

At home, she was fighting everything I would ask her to do. She became deathly scared of baths. She would scream at me with fire in her eyes and have ferocious meltdowns lasting almost an hour. She would hit her sisters when provoked.

I was told that I needed to spank her more, that I lacked all discipline with her. I tried. She would retaliate. No discipline would reach her. There wasn't any tactic that I didn't try that didn't backfire on me instantly. It wasn't even for a lack of consistency.

As time went on, her behavior became worse. We took her to a diagnosing psychiatrist and was told she was ADHD- combined and "attachment disorder". She was so angry at everyone and everything. We took her to therapists. We were told things like: "She doesn't have ADHD, she can play barbies with me forever!" (Of course she can play barbies, you are entertaining her!) "Grandpa is the cause of her anger." (What? What did grandpa do?) When she began to shoplift, we were told we needed to say "yes" to her more often because she was scared to ask for things.

Medications did nothing. You named it, we tried it. Strattera, focalin, concerta, vyvanse, adderall. It all made her even more violent and aggressive. Then, the "attachment disorder" was dropped. She was diagnosed as depressed and put on a string of antidepressants. Nothing worked. Eventually she was diagnosed as ADHD, ODD, depression and anxiety. Yet, no treatments were working and she was getting worse. (On the side, she was also diagnosed with absence seizures in third grade by a neurologist who, in the future, would be a specialist in what she really had...but not yet.)

At age 8, I couldn't get her to shower- she was fearful that someone/something was "watching her." She was already suicidal- telling us she wanted to die. Telling us she wanted to "kill" anyone she was angry with. She was still hitting, and quite violently, anyone she was angry with. If she got angry in the car, she would try to jump while we were moving down the interstate! And, what we thought was completely unrelated but was totally and completely connected, random but consistent actions. Nose blowing and huffing when she breathed were the to biggest ones. It was so obnoxious!

Yet, no treatments were working and she was getting worse.

By 11, we had CPS investigating us for something she had done for the third time. (I personally have PTSD about CPS!) During this time she had set up fake dating profiles for herself on some very real, very adult dating sites. She had Skype contact with a pervert who thought it was a great idea to show an 11 year old his male member. She was in the local mental hospital three times that summer for suicidal threats and had almost ended up in residential treatment then. By 13, she was disassociating, in and out of the mental hospital, then partial treatment, and then finally residential. Her tics had increased earlier that year- Coprolalia (profanity) style Tourettes that had started shortly after dislocating her knee for the second time requiring a second surgery. The strange thing is that it started after the injury and stopped immediately after surgery AFTER being placed on anti-inflammatory meds.

PANS kids often have flat, lifeless eyes and the difference can be evident between before and after pictures.

However, about a year before this someone on Facebook who had heard some other kid's symptoms suggested the parent look up PANDAS. Intrigued, I looked it up and my jaw hit the floor when I saw the symptom list. One only needs THREE symptoms to be diagnosed. She had ALMOST EVERY SINGLE ONE. The big one that had escaped us- OCD. She didn't have rituals or compulsive hand washing, so it was totally missed. Her's came to her in the form of intrusive thoughts. Remember her fearing to take a bath because "someone or something was watching her"? Yep, intrusive thoughts. She had that and others. She admitted feeling later that if she didn't "do this thing", that something bad would happen to her family and we would die. Actually, death seemed to always be on her mind shortly after onset.

With the onset of the tics, which had become so severe she could barely function, I started actively perusing treatment. I regret that I didn't sooner. It still felt like it took forever! I submitted her records around February/March. In May we did the blood work for the Cunningham panel. I was constantly calling the office with updates. Finally at the end of July they offered me an appointment the end of August. The problem was that it had already been determined that she was going into residential treatment, not that it stopped me from making that appointment.

The first part of August she went into residential. Multiple times she ended up in isolation because she was self-harming. Mostly she would bang her head against the wall until she broke the skin open. She was on suicide watch, and they almost didn't let her go to that appointment. I was freaking out on the inside. I prayed so hard that they would let her go.

That very morning in August, with the appointment at 2 p.m., they call me and say the suicide watch had been lifted and they were going to reluctantly let her go. I teach and hadn't arranged for a sub, so I scramble to find coverage and I go. It takes FOREVER to check her out and we arrive at the office at 2:30 p.m. I'm so afraid that they'll say that we are too late and we've missed it. I did call and let them know we were running late and updated them. Once we got there the nurse assured us that it was her day and they wouldn't have canceled on us.

The doctor saw us, prescribed long term antibiotics. I prayed it would be enough after all the stories about IVIG and immuogobulin- I was sure that with the dissociation she would need more. But now, I turned it all back over to residential...and wait.

I prayed so hard that they would let her go.

Within days she had improved 180 degrees! She had gone from suicide watch to model citizen on her floor! The staff couldn't believe it! I couldn't believe it! By the first of October, she was being released- after only two months.

Unfortunately, it doesn't work the same for everyone. Some don't respond well to the antibiotics and they need more. Some take years to recover. We aren't quite fully recovered, but we are so very close. I can tell when she is "flaring" as she gets annoyed by her siblings a little too easily, and she's just agitated over everything. In fact, I was seeing that she had probably picked up a bug after the start of school this year and was flaring this weekend. Today, she had a migraine and probably some other illness symptoms. I offered her antibiotic, some ibuprofen, and bed. I'm hoping she'll be better tomorrow.