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 (‘..my 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:
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.