A diary of depression

girl on beachThis time last year, Nora’s illness was only beginning. We had no idea how bad things would become. We never could have imagined that our eleven-year-old daughter would reach a point where she was so ill she wanted to die.

For some time, I’ve wanted to write about how Nora’s illness progressed, but I’ve never been able to get the words down. It’s always been too painful.

But…I want other parents – who are going through something similar – to know that they’re not alone.

So, I’ve finally written something. I hope it helps.

Month one

Nora’s anxiety has become unmanageable. The only way I can get her into school if we go for long walks beforehand. This means getting up early and walking for up to two hours before school.

I know that Nora’s already in a dark place, and she needs help. Through our GP, we’ve got a referral for a private consultation with a psychiatrist. Apparently, Nora isn’t ill enough for a CAMHS referral.

Month two

The psychiatrist thinks Nora may be suffering from depression, although this condition is – apparently – extremely rare with children as young as Nora (she is eleven).

Because of Nora’s age, the psychiatrist rules out anti-depressants, and recommends a ten-week course of CBT counselling. My husband and I are relieved. It seems inconceivable to medicate our eleven-year-old daughter with anti-depressants.

Month three

The CBT sessions aren’t helping. Nora continues to deteriorate and I suspect the counsellor doesn’t really know how best to treat her.

Nora’s school have suggested that trying – and failing – to keep Nora in school is counter-productive. The counsellor disagrees and thinks we should keep sending her in.

We take the school’s advice, because it feels like the right thing to do. Nora stops going to school.

By now, Nora is self-harming and suicidal. More than once, we’ve ended up in hospital, where we spend nights on ‘suicide watch’. Nora undergoes several psychiatric evaluations. These confirm what we now know: Nora is suffering a severe depressive episode.

Nora’s psychiatrist prescribes anti-depressants. We are relieved. It’s clear Nora needs more than weekly counselling sessions to get her better.

girlMonth four

Nora has stopped speaking. Completely. The only time I hear her voice is during her terrible meltdowns, when the weight of what she is enduring simply becomes too much.  These happen several times a day.

Following one particularly bad episode, we end up back in hospital. We are given a private room, because Nora’s meltdowns are so upsetting to the other children on the ward.

For the third time, Nora is assessed by CAMHS, who tell us they can’t treat Nora while she’s being seen privately.

We have to make a choice. The psychiatrist’s secretary calls me and tells me Nora will get much better treatment under CAMHS. I take her advice and we end the private treatment.

Month five

We are now under the care of CAMHS. We now have a team of people looking after us. There are people I can phone at any time of the day and night. Mental health professionals visit us at home several times a week. We have a new psychiatrist and a brilliant counsellor.

Time and again, these professionals tell me they have never encountered a child with symptoms as severe as Nora’s. This is frightening, but also oddly reassuring because I know she is – indeed – very, very ill.

This month is Nora’s birthday. Her friends come to visit with presents. She can’t speak to them, but they all give her hugs and I’m glad they’ve come. They cry, because they haven’t seen her since she fell ill.

She is pale, gaunt and silent. She has lost so much weight, her friends look like giants beside her.

Month six

Nora’s CAMHS team tell me they are ‘flummoxed’ and simply don’t know how to treat her. If they cannot come up with a plan soon, the next step will be to admit her to a psychiatric unit. This is a specialised unit for teenagers with severe mental health problems. Typically, children in this unit are aged from fourteen to eighteen. Nora is twelve.

We are told Nora will have to be fed through a tube if we cannot get her to eat.

Month seven

We have a care plan! It’s pretty basic but it feels like a huge step forward. It involves Nora doing things like getting out of bed by herself, eating regularly, getting dressed and getting fresh air each day.

Nora doesn’t think she will be able to do any of these things. She locks herself in the bathroom and tries to cut her wrists. Luckily, with the help of a neighbour, I’m able to knock the door down before she cuts herself too badly.

Although this is awful, it’s also a turning point. Gradually, we see tiny signs of improvement. And then something wonderful happens. Nora starts speaking again. Whispers at first, just a few words every now and then.

But every single word is precious. Over the course of her illness, I’d forgotten what her voice sounded like; I would watch videos I’d recorded before she fell ill, simply so I could hear her speaking.

Today (one year since the beginning of Nora’s illness)

Nora is speaking, eating, exercising and engaging with life. She sees her friends. She goes to the gym and goes for long runs most days. She writes poetry, and takes acting classes. She is rehearsing for the lead role in a play.

We don’t know what the future will hold but, then again, none of us know that.

girls danding

Things I wish I’d known

girlOver the last year, I’ve learned a huge amount about mental illness in general, and childhood depression in particular. I’m not an expert, but I know a hell of a lot more than I did before my daughter’s illness.

In a recent post, I listed the top five things I’ve learned about supporting a child with depression.

Today is World Mental Health Day, which aims to raise awareness of mental health issues around the world.

So, to mark World Mental Health Day, I’ve decided to share the five things I wish I’d known earlier about mental illness.

Depression is a terrible illness

Before Nora fell ill, my knowledge of depression was limited. I knew it was an illness caused by a chemical imbalance in the brain. I vaguely understood that depressed people ‘felt down’ and ‘lacked energy’ and sometimes needed medication to help get their lives back on track.

I had no idea it could be a life-threatening illness that, in extreme cases, literally sucks the life out of its victims.

I hadn’t heard about psycho-motor retardation, a terrible depression-related condition that slows down your mind and body, making even the simplest thoughts or movements seem impossible.

At her worst, Nora lost the ability to speak. But she was always able to communicate, using pen and paper to tell me what she was experiencing. This post about depression, captures how she described the illness.

Children with depression hear voices

Did you know this? I sure as hell didn’t.

By the time Nora told me she was hearing voices, she was already very ill. We didn’t know what was happening, or why she’d got ill so quickly.

Like, I suspect, many parents who don’t know much about mental illness, I assumed hearing voices was a ‘very bad thing indeed’. Turns out it’s not half as bad as I imagined.

Of course, it’s very scary for the child who is hearing the voices. But, according to Nora’s psychiatrist, 90% of the children she sees hear voices at some point during their illness.

Anti-depressants save lives

I’ve banged on at length about this topic, so I won’t go on about it again here.

I know some people have concerns about giving anti-depressants to children. At one stage, I might have been one of those parents. I’m not now.

It’s okay to talk about suicide

What parent wants to discuss suicide with their eleven-year-old child? Not me, that’s for sure. Or so I thought until the first time Nora tried to take her own life. Since then, I’ve learned a lot about what you should – and shouldn’t – do when your child has suicidal thoughts.

Again, suicide is something I’ve spoken about in earlier posts, if you want to know about  what I’ve learned.

The most important thing to know is this: if your child tells you they wish they were dead, take them seriously. Speak to them; find out exactly what they’re thinking. Don’t be afraid to ask questions.

Being open – and pragmatic – about suicidal thoughts might just save your child’s life.

You’re stronger than you think you are

As the wise man, Kevin Bacon once said, you’re only ever as happy as your least happy child.

Like most parents, I’ve always assumed I would simply fall apart if something terrible happened to one of my children. In fact, this didn’t happen (well, it hasn’t happened so far…).

Yes, it’s been a terrible year. Over a few months, we watched our daughter change from a happy, confident, cheeky girl to someone who was so ill she was no longer able to speak or dress herself or do any of the basic tasks we take for granted.

We didn’t understand what was happening to our child. And we weren’t alone. The mental health experts working with Nora were also at a loss. We were repeatedly told they had never encountered a child with such severe symptoms. She was so ill, it took a team of mental health experts two months to agree the best way to treat her.

It was the worst of times for our family. But, somehow, we got through it. As Nora gets better, we are stronger as a family than we’ve ever been.

For that, and so much else, I am immensely grateful.

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Five things I’ve learned

lonely boyI’ve been slightly overwhelmed recently by the number of people I’ve met – online and in person – caring for someone with mental health problems.

These conversations have made me realise that I know quite a bit more about anxiety and depression than I did nine months ago, when Nora first became ill.

So, today’s blog looks at five important things I’ve learned about supporting a child with anxiety or depression.

Don’t wait to get help

This may seem obvious, but it’s not always. As parents, our first instinct  is to protect our children. We don’t want them to be ill.

Sometimes, when they start self-harming, stop eating or tell you they want to die, we don’t take this seriously. We tell them to stop self-harming. We sanction them for not eating properly. We tell them they don’t really want to die.

We try to address the problem with logic. But mental health problems aren’t logical.

Self-harming, suicidal thoughts, refusing to go to school, problems eating and sleeping… these are all signs your child needs help.

Educate yourself

This is important. No matter what support you’re getting from CAMHS or other mental health services, you – and you alone – will be the person spending most time with your sick child.

When Nora first fell ill, I believed I could ‘fix’ her through the sheer strength of my love and my determination that she would be well again. I approached her illness with the logical, problem-solving approach I use to tackle most of life’s problems.

Of course, unconditional love is hugely important. Your child needs to know you love them, no matter what. But they also need to know that you understand enough about their illness to help them get them through this dark and difficult time.

The more you learn about your child’s condition, the better placed you’ll be to give them the help they need.

If you’re unsure where to start, take a look at the website for mental health charity Young Minds. They have a wealth of resources, as well as a Parents Helpline you can call for help and advice.

You can also check out the resources section of this blog  for books and online material I’ve found most useful.

tabletsAnti-depressants aren’t always ‘a bad thing’

Nora has been taking Fluoxetine for six months now. She’ll need to continue taking the medication for a further six months, at least. Anti-depressants saved Nora’s life. We wouldn’t be where we are today without it.

I know that anti-depressants aren’t right for everyone. Finding the right medication, at the right dosage, takes time. And all the time you’re playing around with different levels and types of medication, you are acutely aware that you’re giving your child a drug that has horrific side effects.

In our case, persistence paid off. Once we got the medication right, Nora’s recovery was nothing short of miraculous.

Of course, medication alone isn’t enough. In Nora’s case, her recovery is down to a combination of medication, a counsellor who understands her complex issues, and a loving, supportive family.

If a psychiatrist prescribes anti-depressants for your child, that’s because they believe medication is your child’s best hope of recovery right now. You should listen to what the psychiatrist is telling you. It may be, that you try medication and find it doesn’t work. On the other hand, it might just save your child’s life.

Recovery takes time

Nora had been taking anti-depressants for about eight weeks before we saw the first early signs of improvement. At first, the changes were tiny. She started responding when I hugged her, putting her arms on mine for a moment before dropping them again. She started sleeping again. And then, one morning, a miracle happened – she got out of bed and came downstairs without anyone helping her.

Of course, the next morning – and others after that – she needed help again. But there were also many more mornings when she was able to do it alone. And since then, things have continued to improve.

But…

It’s taken nine months to get this far, and she’s still not ‘better’. She hasn’t gone back to school, she still has terrible meltdowns on a regular basis, and she struggles to do many of the day to day tasks she used to take for granted.

The key thing, however, is this: she’s getting better. Your child will too. Just don’t expect it to happen overnight.

It’s no one’s ‘fault’ your child is ill

We all know that mental illness can be triggered by traumatic events in a person’s life. But often people fall ill and there’s no obvious reason why.

If you’ve been a relatively okay parent, if your child’s life up to this point has been pretty uneventful, then the chances are this illness would have happened to them sooner or later.

It’s hard not to blame yourself when your child’s behaviour suddenly changes. Sometimes, it’s also hard not to blame your child.

The line between ‘bad behaviour’ and ‘behaviour caused by anxiety or depression’ is blurred, at best. How can parents know a child’s bad behaviour is deliberate and when it’s not? The simple answer is, we can’t.

But, we should remember this: when a child has anxiety or depression, they’re often unable to help the way they’re behaving.

It’s not your fault your child is ill. It’s not your fault their behaviour is worrying and disruptive. And it’s not their fault, either.

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When your child takes anti-depressants

tabletsThere’s a widely accepted belief among many parents that giving anti-depressants to a child is ‘a very bad thing’. Before Nora fell ill, I was one of ‘those’ parents.

I believed that the medical profession routinely over-prescribed anti-depressants to children who ‘didn’t really need them’. I believed this on the basis of no real evidence. I believed it because other parents believed it. I believed it because I read opinion pieces in broadsheet newspapers about the damaging effects of proscribing anti-depressants to young people.

I believed it because I was incredibly ignorant about mental health problems and the devastating effects they can have on young people and their families.

The purpose of this post isn’t to debate the pros and cons of giving anti-depressants to young people. I’ve had my fair share of negative reactions from other parents who ‘don’t think it’s wise’ for my child (yep, my child not theirs) to be taking drugs that can help her get better again. Quite frankly, I’m tired of trying to explain to people that if Nora wasn’t taking anti-depressants, she would very possibly be dead.

If you’re a parent wondering whether or not anti-depressants are the right choice for you child, I can’t help you make that choice. But I can tell you this: I absolutely believe that anti-depressants saved my daughter’s life.

This post is for parents who made the same choice we did.

Based my experiences with Nora, here are the five things I wish I’d known earlier. If I had, it would have saved me a whole lot of heartache and far too many hours searching the internet for answers.

They take time to work

When Nora was first prescribed anti-depressants we had unrealistic expectations of how quickly they would work. We watched her, day after day, for any signs of improvement. For the longest time, nothing changed.

It doesn’t help that it took time to get her dosage right (see below), but the waiting really was tough.

Nora’s been taking anti-depressants for five months now. During that time, her recovery has been remarkable. She’s still not ‘better’, but she is significantly different from the mute, withdrawn, suicidal child she was a few short months ago.

I know that her recovery isn’t only down to the anti-depressants, but they’ve certainly helped.

So, if you and your child are at the start of your journey with anti-depressants, hang on in there. It takes time, but the wait really is worth it.

You may not get the dosage right first time

Because mental health is so complicated, and children’s brains are still developing, finding the right level of the right kind of anti-depressant for a child can take time.

Nora is taking an SSRI (selective serotonin reuptake inhibitor) anti-depressant called Fluoxetine (commonly known as Prozac). We had to try the drug at three different levels before we saw any effects. Because the side effects are so horrible in kids, increasing the level of medication has to be done gradually.

Again, all of this takes time. Again, it’s worth hanging in if you can.

The side effects are horrible, but they pass quickly

One of the (very valid) reasons parents are reluctant to give anti-depressants to their children is because of the side effects. They are horrific.

Nora’s depression meant she was extremely suicidal and unable to eat. She tried to kill herself several times. She was self-harming. She lost so much weight we thought she might have be fed through a tube.

Two of the most common side effects of Fluoxetine in children are increased suicidal thoughts and nausea. If your child is already suicidal, and already struggling to eat enough food to survive, you really don’t want her taking something that’s going to make this worse.

Did we see any side effects? Yes. Nora threw up for several nights after she first started taking Fluoxetine. And she was extremely suicidal (although, if I’m honest, I couldn’t say whether this was because of the drugs or part of her general illness).

However, the side effects pass. In Nora’s case, they passed relatively quickly (I would say they had disappeared completely after three weeks).

They won’t ‘cure’ your child but they will help

I really wish I’d known this earlier. Somehow, I believed anti-depressants would miraculously ‘cure’ my daughter. I read other people’s experiences of taking anti-depressants. They spoke about waking one morning and feeling as if a cloud had lifted from them. I thought this was how it would be for Nora, but this wasn’t our experience.

Nora’s recovery was gradual. Day by day, we started to notice small improvements. Taken together, those improvements are dramatic. But they are still only part of her recovery.

The really key part from now on will be the work she does with her CAMHS counsellor, helping her to manage her feelings and build the resilience she needs to navigate her way through her teenage years.

When they start to work, it’s the best thing ever

This is why you have to hang in there when your child starts taking anti-depressants. For all the reasons listed above, it’s not easy. But it’s worth it.

My child was so very ill. She had stopped talking. She wanted to die. She had developed psycho-motor retardation, a condition that slows down your thought processes and body movements.

Today, she is engaged with the world again. She can fall asleep without needing me to be with her. She speaks and laughs and cracks jokes with her brother. She sees her friends. We go swimming in the sea. She is alive and embracing life.

All of this means more than anything. My girl is coming back to me.

We chose to give Nora anti-depressants, exactly as we would choose to give her life saving medication if she had cancer or any other illness. I am very glad we did.

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