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Understanding Annabel: A story of childhood anxiety

By Katy Emmerson posted September 07, 2017

It came on very quickly after a bout of tonsillitis 18 months ago. One night our eldest daughter Annabel, who has just turned 11, became very upset when I was about to go out. She screamed begging me not to leave. At first we thought she must have had a bad day (maybe a falling out with a friend?) but it was a very extreme reaction. But very quickly the screaming happened every night – starting at school pick up time and carrying on until late into the night; something was wrong. She damaged her vocal chords and lost her voice. It escalated, and soon she couldn’t sleep away from me and couldn’t even sleep until she knew I was asleep, (so she was confident I wouldn’t leave her). We stopped going out as we never knew when the screaming would start. Sometimes she screamed on the street outside our house – to others it simply looked like a child out of control. Every day was unpredictable, we were held ransom to screaming and outbursts, our other two children confused, all of us exhausted; our family life and parenting skills tested to the extreme. 

But she was a child screaming for help because she was frightened (we later found out) – screaming because she couldn’t make sense of what was happening in her head.

That bout of tonsillitis proved key in explaining what was happening. Unable to cope we sought medical help, and after a specialist referral Annabel was diagnosed with the rare PANDAS disorder (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). This means when she gets certain infections her antibodies attack brain cells, causing extreme anxiety. It is believed to only affect children predisposed to anxiety. Looking back we realise now she has always lived with some level of anxiety – always disliked leaving me; often found it hard to go to school or events where I didn’t stay. Whilst these reactions will be recognised by some parents, PANDAS has intensified these traits resulting in an unrecognisable family life. 

Despite being on a low dose of antibiotics for 12 months which has kept the infections to a minimum, she still suffers with a much heightened state of anxiety than before PANDAS and she struggles, sometimes daily, to deal with it. 2 weeks ago she started cognitive behavioural therapy (CBT), the recommended treatment for PANDAS. We’re hoping this will help her cope with the return to school in September which she is already dreading. She isn’t going to secondary school and is repeating Year 6 as she has missed a lot of school and she just isn’t emotionally equipped to deal with the changes that would bring (‘ wings aren’t quite ready’ she recently said).  

We’ve learnt that emotional dangers lurk around every corner and these dangers are often unseen and unpredictable until we reach them. It’s been heartbreaking to watch her struggle and to feel so helpless at times. 

We have good days and bad days (all of us). Days when she won’t go to school and then days when we get a glimpse of the old Annabel before the extreme anxiety set in. Days when I worry about her future and days when she seems happy. People often tell me she will get better; I’m not sure that she will get better; but I do know that we will find a way to live with it and a way for her to cope with it.

But this is a story of hope, as she is so much better than she was 18 months ago and I wish I could have talked to someone who had been through this and could tell me that we would find our way together. 

We’ve learnt lots about Annabel and her anxiety; but it still feels like we have a mountain to climb in terms of understanding. We are not at the end, probably just the beginning. Annabel is soon to become a teenager which will bring new social, emotional and developmental challenges and we can’t predict how that will play out. But I know now some things that help us: 

  • You are not alone. Since talking about anxiety so many people have been in touch to say that either they as adults have or do suffer with it; and lots of people have been in touch about their children’s anxiety. Talk about anxiety: the more we talk about it the more we raise awareness and the more people will understand. There’s been so much in the press recently about mental health and hopefully the tide is changing. With greater understanding and funding for mental health then attitudes will change.

  • Talk about mental health to your child. One doctor spoke very frankly with Annabel about her anxiety and her mental health in a way that we hadn’t known how to. Speaking openly about it took away a lot of the unknown for her about what was happening. It was like a lightbulb moment ‘Ah she said – this explains why I couldn’t sleep after learning about the Great Fire of London – because I thought our house might burn down’. It was also a lightbulb moment for me as we had been advised not to talk to her about her anxiety because that way it would become self fulfilling. That was wrong. Now we talk about it and sometimes she can talk about it too.

  • Keep asking for help. Don’t give up asking for help as it is there – it’s just harder to access. At the beginning we hoped that she would just get better, that we alone could help her. But then you wouldn’t sit at home waiting for a broken leg to mend – you’d go and get help. The same applies to mental health – go to your doctor; ask for help; don’t think you have to manage alone or that it will pass.

  • Don’t blame yourself. Of course we just want our children to be happy. And when they’re not – it’s somehow our fault. This is an illness of course; not simply a case of being happy or sad. People asked me if it had coincided with me going back to work. I thought about that. I thought maybe it had. Was this my fault? Actually in some ways it would have been easier if it had been, because I could have fixed that. But of course it isn’t my fault. There isn’t anything I could have done or not done that would have stopped this.

  • Slow down. You can’t rush someone with anxiety. If you rush them, in my experience, it makes them go slower. It increases the indecision (what to wear; how to do their hair; what to eat etc), which is just a cover for ‘I actually feel really anxious about where I am about to go’. Of course in reality not rushing is hard; it’s frustrating and it’s not realistic. But why do we live at such a fast pace? I’ve tried to slow down but the other day my younger daughter said to me ‘I know you make out we’re not in a rush all the time, but I know we are..’ (epic fail?).

A wise doctor gave Annabel two pieces of advice:

1. Do kind things without expecting anything in return. This will help you be happy.
2. Exercise regularly and this will help you be happy too.

I’ve taken that on as my own mantra! I have been running; running to keep sane as well as running to keep fit. We do after all have to think about our own mental health when we are desperately trying to guard and protect someone else’s. 

So I am running the half marathon, together with my great friend and business partner, to raise awareness about mental health and to raise money for Young Minds – a charity that helps young people like Annabel, and families like ours.

Life for Annabel, and all of us, is very much like being on a rollercoaster – one we can’t get off (I’ve tried but our seatbelts are stuck) and one we’re on for the long haul. But the good thing about rollercoasters is that there are as many ups as there are downs.

If you would like to run the marathon with Rattle and Roll to raise money for Young Minds please get in touch and we’ll send you a t-shirt. If you want to donate please click here for our Just Giving Page