I write the following with some anxiety. Our daughter is really unwell. I think if she had a physical illness, I wouldn’t hesitate to talk about it. I want to be part of breaking the stigma associated with other kinds of illnesses and I want to honour her request that I talk about this publicly. She wants people to know what she’s going through, and I want your prayer and for things to get better. So deep breath and here goes…
I started taking my 12-year-old daughter to see a psychologist just over a year ago when she was in year six. She was struggling with anxiety and depression and having occasional panic attacks in class. The psychologist helped a little, but when G entered high school, the panic attacks became a daily thing, and we began to see a lot of fear, anger and aggression, tears and talk of self-harm. In February we started meeting regularly with our lovely GP so that he could get to know G and begin to make the right referrals. After some months, we agreed that G should see a psychiatrist. We suspected that she might have ADHD. By the time we saw the psychiatrist in May, G had also developed a slight shoulder tic. It was just a discrete little shrug of her right shoulder that I thought was no big deal.
The psychiatrist was an older gentleman and I noted the absence of a computer in his stuffy, poorly decorated office. He spoke to G for a while on her own, and then to Leigh and I. He asked all about our family history and then he called her back into the room. He told us that G had Generalised Anxiety Disorder and he gave us a prescription for an SSRI. G had been terrified of going to the appointment, and I had made a deal with her- if she got through it, I’d take her to the movies afterwards, and she would not have to return to school.
We went and saw a movie. We were the only people under 60 in the cinema. The next day was my birthday and G and I were both unwell. We had to cancel our camping trip to Moore River and I didn’t get out of bed for over a week. Almost three months later I am still coughing up big oysters from that particular illness.
That weekend, only three days into taking the medication, we noticed an incredible difference in G, an enormous sense of peace had settled over her. Our girls played together happily in her bedroom all day and I remember remarking to Leigh that the medicine seemed like a wonder drug.
Within a week, however, something else started happening. Suddenly the minor shoulder shrug, the thing that had seemed liked no big deal, became an intense, violent head jerk. She would wrench her chin to her right shoulder, scrunch her shoulders up to her ears, yell “die” really loudly, smack her lips together and whistle. This increased in intensity over the weeks and I pulled her out of school. We went back to the psychiatrist. He took one look at G and said, “stop the medication and go see a neurologist.” We spent less than 5 minutes in his office and he charged us $180.
Three days later, on June 12, the tic had become so aggressive G was screaming in agony and distress. I took her along to PCH and they admitted her to the ward, ran blood tests and read the results of the CT the doctor had ordered earlier that day. They sent her home with medication to relax her muscles and help her sleep. The paediatrician had said that tics weren’t such a big deal and she would probably grow out of them.
We came home with no answers and no way forward. The tics continued to worsen, and over the next weeks, we saw new ones every few days. I had no idea there were so many different types of vocal and motor tics but now I think we have seen them all, as well as a range of OCD behaviours and some plain weird, unexplainable stuff. We tried to see neurologists and paediatricians but the waiting lists are long. Despite pleas from our GP and from us, we continue to wait for an appointment.
The psychiatrist tried a different SSRI but it made things worse and resulted in another ED trip.
On a third visit to the ED G was blacking out, having mini seizures 4-5 times a minute. Again, we were sent home, told that it was just another tic.
Our daughter’s health continues to rapidly decline and she now has an alarming range of behaviours we cannot explain. She can no longer pronounce her g and d sounds, she talks with a weird accent, throws random things across the room, can’t stand still without falling over, holds knives poised over her eyeball and screams to help her stop. Pours water all over the kitchen floor. Gets stuck like a statue in random postures. She has a weird little monologue about biting your finger off like a carrot, which she repeats many, many times a day. (I can say it by heart.) She cusses like a pirate- F BOMBS galore, shockingly screamed with a level of poetic skill I’m sure I’ve never heard in my life. She pounds things with her fists- mostly Leigh, but anything really- including a quiche some kind soul made us. She hits herself, flings food, screams “jalapenos!” 100 times a day, can’t fall asleep at night for fear, randomly yells “you’re a turkey”, picks at her fingernails until they bleed and can’t be touched lightly but likes to be held tightly, can’t handle bright lights or loud noises, people too close, weird textures or the feel of sand under her feet. She screams at me to stand still and then she tries to suck my nose- many times a day.
And then sometimes, for beautiful moments that I try to soak up, she is completely fine. No accent, no speech impediment, no tics, no fuzzy thinking or weirdness. Just a flash, maybe a minute or two, of my gentle, nurturing, articulate, clever, hilarious, amazing kid.
She might have Tourette’s, she might have a brain infection like PANS or PANDAS, she might have OCD, she might have FND, she might have ADHD, she might have something else or all of the above. She might just be really intolerant of medication. Who knows and how will we find out?
I’ve tried to get some help for her in every way I can think of and I have her on multiple waiting lists. We really need a neurologist. I present to ED with packed bags and the intention to not go home until I have answers but that never works out. The best support, and the most answers I’ve found so far, come from beautiful strangers on the internet, other struggling parents in Facebook support groups like Tourette’s Syndrome Australia.
It seems to me that the paediatric health system in WA is broken.
Or, if you ask G, she’d scream “Yo Turkey, it’s completely f#@$d!”