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!”
Peter and I have just read this. We will pray Yvette for a miracle, for an appointment and for hope. We love you.
Love you too x
Côin and I have just read this too. We will be praying for you all, an appointment, for courage and hope. We love you too ❤️❤️
Thank you, Barbara. xx
I have had to wait for over a year to see a paediatrician for my son… G should be a priority case… she should have neurologists clambering to help…. The system is completely f$&@*d. Our children should not have to wait so long to get the help they need and deserve.
I agree, Megan. I’m so sorry you had to wait so long. I had a paed from PCH call last week to say we have a referral to neuro but she has no idea when. The waiting lists suck.
Oh Yvette, that sounds incredibly hard. I don’t know what to say other than may Jesus bring healing for your precious daughter. Thank you for your honesty.
Thanks Eliza.
Hey lovely, thank you for sharing something so raw. Thank your daughter for her courage. Such vulnerability and courage has stretched my brain into new insights, stretched my heart’s compassion and my soul’s desire to pray for you all.
Such a quick decent into multiple tics and neurological symptoms. Praying for you , G and your family. Mental health services in WA for youth and adults has been a challenge for many of us. My own family has been putting up with lack of service for 20 years. I see you have some strong advocates with influence. I pray that you get seen by a well trained neurologist soon and that G’s condition improves rapidly. I am a special needs educator. My own experience and experience with young people has mostly shown that the medication needs to be correct and correct dose. Also, medication is not always the answer, sometimes the cause.
You and G are all strong and resilient. Strong advocacy will get you to where you can get the most medical support here in WA. Keep pushing, I did not my son. Prayers and blessings sent your way
Thanks so much, Mandy. I appreciate your thoughts and prayers.
Oh thank you, Elissa. Huge learning curve for us too!
Dear Yvette, so very sorry to hear about the suffering in your family. I feel a bit lost for words. Please be assured of my prayers.
Dear Yvette,
My heart goes out for your beautiful daughter and your family.
The medical system in general is broken. It is all about the bandaid approach. Which is so unhelpful in such a complex situation that you and your family find yourself in.
Have you looked into nutritional medicine. I have followed a lady called Jo Whitton (Quirky Cooking) for many years. Her son developed severe OCD and anxiety around the age your daughter is. Through changing his diet and that of her entire family. He is now completely healed and telling his story. Start with making chicken broth and your daughter sipping it throughout the day.
I would be happy to make it for you and deliver it to your house. My mum also makes the most amazing broth.
My mum had a cancer journey last year along with chemotherapy. She made sure she drank broth everyday. It really helped her body’s ability to cope with chemo.
Much love to you and your family.
Thank you, Michelle. That is so kind, and so kind of you to offer to cook broth for us. We have been overwhelmed with homecooked meals so we are okay for now. I agree that gut health is really important!
Thank you, Ann.
Dear Yvette,
My heart is breaking ? for you, I am so sad that you & your beautiful daughter have to walk this incredibly painful & confusing path.
How brave is your daughter wanting you to share this malady that is afflicting her & by extension your whole family, but especially you as Mum. You are & have been in my prayers most of this morning, I will continue to petition God of the universe on your behalf. with love Debbie
Thank you, Debbie. Think of you often. Hope you are well. x
Yvette, I honestly don’t know what to say, but I do want to acknowledge the bravery of your daughter in asking you to share her suffering publicly. It is this which makes it possible for others to understand, and to deal with their own suffering. I also acknowledge your bravery in actually writing what you have. Thank you. God bless. Rob
Thank you, my friend. Yep, she is a really brave kid and she knows that it comes at a cost but feels that it’s worth it.
Dear Yvette and family,
What a distressing and confusing time you are going through. I am praying that your prayers are answered quickly and completely. May you be very conscious of the “everlasting arms of Jesus ” holding you as you face each new day.
Thanks Pam. Hope you are well x
Yvette I have only just seen this. I will pray for you all. This is a very difficult road you have to travel. Thank you for your openness about what you are going through. I pray you will get that appointment soon.
Thank you, Loes x
My prayers and caring love go out to you all. Blessings on your whole family and healing for your daughter.
Thank you, Peter.
Yvette, I just read. I thought I had been through tough times with Kids and Anxiety but I cannot begin to imagine what you’re going through. Sending all our love. Letting you know you will be on our prayer list. May God give you peace and wisdom and send the right people into you’re lives to lead you to the truth that will set your little darling free. xx
He holds the keys to all unknown.
steph