Pediatric Anxiety

Synopsis Of My Neuroses

I've been seeing a therapist since I was nine years old.

It started one night while I was sitting in my room, the lights off wondering why in world I even existed. I picked up a small paring knife that I'd taken from the kitchen earlier that day.

As I stared at it, thoughts about how I could end my life flooded my mind. It became too much to handle. I dropped the knife and immediately went to my mother and told her there was something wrong with my mind.

The following week I was sitting in a waiting room, permeated with the scent of hand-sanitizer and bleach. All the other kids were playing with toys and yelling. I was scared for my life. Every time I felt eyes upon me, it was like lasers burning through me. I didn't know how to breathe, how to act, where to move my hands. 

An hour later, I was riding home with my mom crying. This was the beginning of my mental health care. It was scary, but I had a glimmer of hope that I'd begin to feel comfortable in my own skin. 

A couple years later, after many sessions of cognitive behavioral therapy, I was diagnosed with dysthymia, panic attack disorder, generalized anxiety, and social phobia. These big four are still a major part of my day-to-day life.

Dysthymia - that one is easy. My mother has it. And when neither of us take care of ourselves or celebrate small victories from time to time, we fall into a rut that we can't climb out of without outside help.

The panic attacks still happen every day. But with breathing patterns and paying attention to triggers, I can substantially reduce the destructiveness. I used to throw things and break stuff. Now, I step back and try to find out why I'm flipping out in the first place. 

The generalized anxiety? That one will never go away. No matter what I do, no matter how many times I walk into a place I've been thousands of times, I still worry worry worry. It's like nothing is comfortable to me.

Which leads me to social phobia. How does one get social phobia? I have no clue, but I would trade everything I've ever done, everything I own, and all of my friends to get rid of it. The other day I drove past Wal-Mart four times before it was okay for me to park and get out of the car. 

For the last two months, I haven't been taking any medication. I've been seeing a therapist. I can't afford mental health care, so I have to go to a sliding scale facility. I am eternally grateful that I have this resource available. 

However, every day without an anti-depressant is like slipping further into the neurosis I've been trying to avoid my whole life.

At times, I'm loudly talking to myself for five minutes before I realize it's an external monologue. 

People I've talked to in the past, who don't know of my struggles, who talk smack about psychiatry and medicine, have it all wrong.

I do not take a strong anti-anxiety drug as a way to "forget" about my problems. I take it because it helps me to function normally in public. It makes me actually feel comfortable in my own skin for at least 6-8 hours. 

I shake and I can't sleep. I constantly think about how the world would be better without me.

These have been the hardest last few months of my life, and I just thought it was worth sharing.

Thank you, The Band, for listening.

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My Tween And Anxiety

I have been "blessed" with the beauty of Generalized Panic Disorder (GAD) and now panic attacks. I think I have them under control, for the most part, but I know I'm not the only person in my family to suffer from them.

I have a cousin with severe Obsessive Compulsive Disorder and agoraphobia. My mother has been on anti-anxiety medication since I can remember and refuses to leave the house 90 percent of the time. And they aren't the only ones. I don't worry so much about them; they're adults and know of the wonderful resources available to them.

What I do worry about is my precious daughter. She had her first panic attack at age six when she realized that her daddy and I weren't going to be in the same house anymore. My ex decided that it was an isolated incident and would go away without medical attention. It did not. We took her to see my therapist and psychiatrist. The therapy helped, and the doctor put her on a low dose of anti-anxiety medications. Of course the ex didn't feel his daughter needed to be a junkie (his words) and we discontinued them.

Things were alright for a while, but every now and then she would have such severe anxiety that nothing could calm her down. She didn't want to go to school on PE testing days or days when she had to do an oral report. She didn't want to go to school if there had been an incident the day before. After months of dragging her to school, I finally had to sit her down and share my experiences. My mother had never done this with me and I thought if my daughter knew she wasn't alone, she would feel better.

So I told her how my heart would race when I thought of meeting a new person. How my legs would get all wobbly if I had to walk up to a podium or speak in front of people or run a lap with everyone watching. I left nothing out. And my precious ray of sunshine said to me, "I'm sorry you're hurting Momma, how can I help you?"

I wept!

No honey, I'm here to help you, so that you don't have to be alone or afraid. I want you to know that you are normal! Everyone has anxiety! Just not to the extreme that we sometimes have it.

Since this time (about four years ago) she still experiences the anxiety, but we talk through it. We take a time out in a quiet room and I bring her cold water or a snack or just sit at the bed and listen. We are open about it. I know I can't be with her all the time, and I know that there's always a monkey wrench thrown into the mix, but we're teaching her to cope with things as they come. That she is not a alone, and that there is an end to these feelings of anxiety.

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Beautiful Girl

She is almost nine years old, slim and graceful, with long, fair hair and blue eyes in a pixie face. Her front teeth are crooked.

She dances constantly to music she hears - in commercials on the television, on the radio in passing cars, and sometimes only in her colorful mind. She dances with a curious combination of self awareness and utter abandon that takes my breath away.

She is staggeringly creative, folding masses of tiny origami bats that she made up "out of her head." These nest in carefully arranged families on her bookshelf.

She has trouble with days and asks over and over again when dance class is or when we are going here or there. No matter how often I tell her, the information won't track, won't stick, won't stay.

She is dyslexic. She reads with a stubborn, gritty intensity. She gets frustrated easily.  She can't articulate why she is upset and stutters and fumes with the passion of a teenager. She has trouble with changes in schedule and does not change gears or transition from one task to another easily. 

She moves effortlessly into her imagination. She returns to the real world with difficulty. When she gets upset, she rocks slightly back and forth.

At school during lunch time she plays with her sister's little friends. She is popular with the four and five year olds. Today, one of her classmates called her weird. She stood there with a stormy look on her face. I wilt inside. I want her to have only sunny days.

Tomorrow we are going to the doctor. Again. She is being assessed. This is a long and convoluted process with various professionals providing pieces of the puzzle. Each new term is introduced in the light of doctors offices and examined by her worried mother in the dead of night. Of course this is when all the most rational and reasoned thoughts leave me.  Socially awkward, anxious, no speech delay; Aspergers?

I don't know what comes next. I know that I have no idea what I'm doing. I know that she will be judged. The labels will stick. I have no defense against this. I only know that I will stick her with my own labels - big, bright pink, glittery labels in neon letters ten feet high. 

She is Beautiful. She is my Daughter. She is Loved.

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I Am Pyrophobic

Once upon a time, when I was about 6 years old, a fireman came into my kindergarten classroom to teach us fire safety. He meant well. His goal was to give us ways to stay safe in a bad situation. Change batteries in detectors.  Have a meeting place outside. Crawl below the smoke. Stop, drop and roll. You know, the usual.

Only, I wasn't exactly a normal little girl. Oh, my true uniqueness wouldn't blossom until middle school. However, I was already a bit on the side of well, me.

While his intent was to keep as safe as can be, he succeeded in opening my eyes into a world of terror.

I spent the next week sleeping on the floor outside my parent's bedroom door.  Too terrified that my house would spontaneously combust to even attempt my own bed. My mother finally coaxed me into my own bed when she bought me my own fire extinguisher to put in my bedside table. I was in my late 20's before I finally got rid of it. (It expired. Also? It was meant for grease fires.)

Even so, it was about half a decade before I could even see a fire truck without having nightmares later that night. I was well past the age of being allowed to touch matches before I could force myself to strike one hard enough to light it and the candle. And at *cough*28*cough* I still can't see fire or explosions on TV without cowering and turning my head.

It's been two decades and I am here to tell you: you never know when it will hit, what will trigger it, or even the rationale behind it. But that's kind of the thing about phobias. They are there. They are mean. They take no hostages. And usually? You can't explain them. If you could explain them? It wouldn't be a phobia. Had my house burned down at 6, it would be PTSD, not a phobia.

My name is Karen Marrs and I am pyrophobic.

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VCFS - Velocardiofacial Syndrome

My little brother is an angel - the best kid I know. I am not using his name to respect his privacy.

I remember seeing him for the first time in the hospital. He was SO small. His skin was SO pale. He looked sick. He looked so, so sick. The look on my father's face gave it away: something was wrong. He'd been born with a defective kidney. That was the first sign, although we didn't know it at the time.

He went through a few months an abnormal baby - he slept ALL the time. His pale skin looked as if no blood streamed through his veins. He barely ate, so he didn't grow much for the first three months. We struggled to find an answer - any answer - to why he was so sick, but nobody knew. No one could tell us why he had to suffer. I was so frustrated and angry; I just wanted my little brother to be okay.

Then the doctors told us he they'd found the problem and he needed surgery, and fast. They needed to remove his defective kidney because it was releasing toxins into his body. I was so relieved! So what if he only has one kidney? Lots of people only have one and still live great lives! I was so happy they'd finally found out what was wrong with him. He would be fine after they removed it!

I wish that were true.

The surgery went well and we were all hopeful, but after a few weeks, he got worse instead of better. He still wasn't a normal baby! He was weak, small, and sickly. We'd hoped he would be better after his kidney was taken out, but he simply wasn't.

The doctors learned he had VSD (Ventricular Septal Defect) and ASD (Atrial Septal Defect) -  two holes in his heart which made it difficult for the blood to pump properly. Finally, we'd found what was wrong with him! He would be all better after they fixed his heart!

But this procedure was very scary. They had to break his ribs, cut open his heart, and patch up the holes. The doctors would have to disconnect his heart and allow a machine to act as his heart during the procedure. I was so scared. They said it was a relatively low risk procedure. Sure doesn't sound like it, but if he did not get it fixed, he wouldn't be able to function and might even go into heart failure.

The night before his surgery, I held him, feeding him his bottle. No one was around, so I gave him a pep talk. "You're going to get through this. This is the last thing they're going to have to do to you, and then you'll be a normal kid and play and eat and just be okay. Be strong, little guy. You have to make it through. I know you will make it through this."

I'll never forget the day of the surgery. I was in 9th grade and the whole day was a fog - I couldn't stop worrying about him. I thought of all the worst possible case scenarios. I remember sitting in 6th period health class, staring at the clock, and glancing at my phone under my desk. The surgery should've been over: why hadn't I gotten a text? My mind was racing; I burst into tears ran out of the room. After a half an hour in the bathroom crying, I got the text: he was all right. He made it. The relief I felt in that moment was the most comforting thing I've ever felt. It made me cry harder - this time because I was so happy.

The poor little guy wasn't even two, and had already had two major surgeries. The recovery was tough. He hated the hospital. HATED IT. He cried all the time. He couldn't walk or crawl for at least two weeks. He was hooked up to several machines. He looked like an experiment. I wanted to do anything to ease his pain, but there was nothing I could do. It made me feel terrible.

After a few months, he began to get better. We were all so hopeful! Numerous therapists came to the house to work with him, trying to get him back on track. He wouldn't sleep, he ate a bit more, and wasn't as pale. But he still didn't seem like a normal baby. What was it? What else could possibly be wrong? And then we all realized something: he didn't make any sounds. Even his crying was muffled.

We took him to the doctor, where they discovered his vocal cords were fused together. Yet another surgery. On top of that, he had to get his tonsils removed and his throat fixed so he could swallow properly. At least, it was only one surgery.

He began to grow a bit more and he began to make sounds - such a relief! But something still wasn't right. Why couldn't we figure out what was wrong with this poor kid? Why did he have to suffer?

As he grew, he began to look a little different from the rest of the kids. His almond shaped eyes and small mouth were signs, but we didn't know that yet. The problems just kept coming. He had a seizure right in front of me and I had to call an ambulance.

After hours upon days upon weeks upon months researching his symptoms, we learned of a genetic disorder: Velocardiofacial Syndrome. VCFS. DiGeorge Syndrome.

The description fit perfectly: the heart problems, the kidney problems, eating, walking, speaking difficulties, everything. It even described what he looked like. This was it. We found it. Blood test results came back positive, and he was diagnosed with VCFS. It's a genetic disorder and, like Down syndrome, it's a deletion or mutilation of a chromosome. We finally found the demon that was destroying my brother.

His battles were not over, though: his bladder was not working properly, which meant another surgery. He still suffers with other problems. He has trouble speaking because his vocal cords aren't fully developed. He has many therapists just to stay on track, and he's at least a year and a half behind other four year olds. He doesn't look different, but he definitely resembles other people with VCFS. He suffers from terrible anxiety, learning disabilities, many phobias, and cannot stand change. He has a ways to go, many struggles to overcome, but I'm just glad he's alive. I'm so happy that he can play and have fun. If we hadn't found that he had this syndrome, many symptoms would have gone unnoticed and untreated. He could've died. We caught it just in time.

This syndrome affects people who may not even know it as Velocardiofacial Syndrome is a fairly new genetic disorder discovered by Dr. DiGeorge in the 80's. My brother goes for check-ups with him every year.

I'm hoping that by writing this, other people may learn of Velocardiofacial Syndrome, too.

And to my brother, thank you for being you.

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