Have my meds affected my kids?

seroquelOn Tuesday night, my kids raced to the front door to greet a special visitor.  Her name was Ameka and rather than dinner, she had come to spend two hours interviewing the kids and I.  By ‘interview’ I don’t mean the journalistic kind… rather, she was there as part of a new research project into the effects on children aged 1-5 of taking anti-psychotic medication during pregnancy.

I’ve shared before about how – after a horrific experience following the birth of my first baby – I decided to go on Seroquel in the latter stages of my subsequent two pregnancies.  This wasn’t an easy decision. Before I fell pregnant the second time I went to see  one of the world’s leading specialists in women’s mental health – trying to find out more information about possible effects of anti-psychotic medication on unborn babies.

Unfortunately, at that time (five years ago) there wasn’t much research to reassure me that it was safe or not. In fact, the specialist I saw was embarking on a world-first study into the effects of Anti-Psychotic Medication on babies.  At the time, they had a database of 25 babies (all healthy!) whose development they were tracking from birth to 12 months.

Knowing how desperately needed this research was, I readily agreed to participate in the study.  The phone calls and visits continued until my each child turned one.

I must admit, I was a little disappointed when our time in the study ended. as they learn to walk, talk and really start showing their true personality. Surely studying babies only until they turned one wasn’t giving the researchers the full picture?

So I was pleased to receive a phone call last month, letting me know that Ameka, a medical student, was joining the team and continuing the research up until the age of five –  as part of her thesis.  I readily agreed for her to interview my younger two kids (now aged three and five) and I.

So that’s how we found ourselves last night, watching my youngest son (a real clown!) hopping around the room on one foot, building towers out of blocks, drawing different shapes and doing puzzles.  Watching his younger siblings pass their tests with flying colours, my high achieving oldest son hovered by… confused as to why this special guest wasn’t interested in testing him.

As she left, I couldn’t help but ask Ameka, “So… do the kids seem ok to you?”  I’ve never had any cause to doubt that they are perfectly ok. But somehow, having a medical professional agree that the medication hasn’t hampered their development at all was… reassuring.

I might have bipolar disorder.  But like any mum out there, I want the best for my children.  My prayer is that years down the track, when  other women with bipolar are preparing for pregnancy, ground-breaking research like this will mean they can be assured that looking after their own health will not harm the ones they love best.

 

 

 

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An unexpected miracle

Less than a week ago, I underwent eye surgery to remove a cataract I’d had since birth in my right eye.

In the lead up to the surgery, I was completely focused on the risks associated with the surgery: that I’d end up with no sight at all in my right eye or – even worse – that my ‘good’ left eye would be damaged.

Despite there only being a 1% chance of being left blind, this was enough to have me freaked out.  What if I never saw my children or husband again?  What if I had to give up a job I loved to stay at home – blind? What if I had to live in a bleak, dark world for the rest of my life?

I got so caught up worrying about the surgery, that I completely forgot to hope – or pray – for a miracle.  When friends and family told me they were praying for my eye to be healed, I told them my surgeon said it was impossible to get sight back in that eye.  Apparently if you can’t see out of one eye for long enough, your brain ‘switches off’ sight to that eye.

And yet, a miracle is exactly what I got.   To the surgeon’s surprise, when my bandages were removed I could see out of my right eye for the first time ever!  Five days later, I’m still in shock that I’m no longer blind in one eye.

This ‘miracle’ got me thinking… since I was diagnosed with bipolar disorder, have I ever really believed that one day I could be healed of it?  I’m not talking about stopping my medication to follow some unproven theory.  But what if – in the years ahead – researchers somewhere discover the cause behind bipolar disorder or a permanent ‘cure’ for the condition?

Like my attitude before my eye surgery, I’ve never allowed myself to even think of what it would be like to be cured of bipolar disorder.   No longer having to rely on daily medication, with annoying side-effects.  No longer at risk of going too ‘high’ or ‘low’. No longer having to declare my condition on insurance or work forms. And – most importantly – no longer having to worry if I will pass this condition on to my children.

When you’ve lived with a condition for a long time, you tend to resign yourself to the fact that you’re always going to have it.  I know I never expected to see out of my right eye again. If I’m honest – I don’t expect to ever be ‘cured’ of bipolar disorder.

And yet, it’s important to keep hoping for a cure… to keep urging the medical community to continue looking for answers and to keep praying for a miracle for the hundreds of thousands of people impacted by this condition.

Out of sight, out of mind

In just over 12 hours, a surgeon is going to slice into my right eye and remove a cataract that I’ve had since I was formed in my mother’s womb.

While most people wouldn’t know it, I am practically blind in that eye.   Not that I’m complaining… apart from making me rather uncoordinated at ball sports and being unable to see 3D movies, it hasn’t really affected me too much. I can still drive and unlike older people whose eyesite deteriorates when they get a cataract, I’ve never known what it’s like to be able to see out of both my eyes.

For many years I barely gave my cataract a second thought – aside from going for yearly check-ups with my optometrist.  That was until a year or so ago, when my cataract suddenly became bigger and turned an opaque, white colour- covering most of my pupil. A few months later, my husband commented that my right eye was sometimes ‘drifting’… not quite following the other eye like it used to.

All of a sudden, something that I’d been able to hide from others all my life suddenly became noticeable. People starting asking me what was wrong with my eye – and I’d have to explain about my cataract. I became self-conscious of it and for the first time ditched my contact lenses and started wearing my glasses to work – to try and hide my eye.

A visit to an opthamologist confirmed that my cataract was no longer as harmless as it used to be and I was  booked in for surgery three weeks later.

Thinking about all of this made me wonder what it would be like if – like my cataract – my bipolar disorder suddenly became noticeable to my friends and work colleagues.

Imagine if people could tell just by looking at me that I had a mental illness? How would that affect my work prospects? Would it change people’s opinions of me?

While I don’t mind explaining about my cataract to people, I wonder if I would I feel as comfortable talking about my diagnosis with bipolar disorder? Probably not.  Both are conditions that I just happened to be born with – and yet only one of them carries social stigma.

While I’m now fairly comfortable talking about my bipolar disorder, I still like to pick and choose when, where and with whom I share my story.  And I’m still hesitant to bring it up with work colleagues.  Unlike my cataract, my bipolar disorder is something that I don’t want to be the topic of office chit-chat.

Are you comfortable with talking about your diagnosis with others?  If not, is it because you worry it will change people’s opinions of you?

Brains or beauty: why should I have to choose?

This morning, getting ready to have my morning shower, I averted my eyes from the scales – and my reflection in the mirror.  A few days earlier, I had been shocked to see the numbers on the scale had gone up… again.

After having lost a stack of weight in the past couple of years, I’ve been struggling to stop the kilos piling back on since having to increase my medications after an episode of depression last year.

Not only that, but one of the medication, Epilim, is having another awful side-effect – causing my hair to fall out… not a great feeling for a woman.  Every time I run my hands through my hair, precious strands float away.

Like many people who have been on anti-psychotic or mood-stabilizing medications before, I know that weight gain is a well-documented side effect.  But the hair thing came as a nasty surprise.

Asking my psychiatrist about it at our next appointment, she talked me through my (very few) alternative options.  One of the drugs she suggested came with no risk of weight gain or hair loss.  “Great!” I thought.  Until she mentioned that if I noticed a rash appearing while I was taking it, I needed to get straight to a Doctor – as  it could be fatal.

Unwilling to take the risk of dying – no matter how small the odds – I’ve decided to stay on the same medications for now.  After all, they are keeping me well and after experiencing my first bout of depression, I have no desire to go back there.  I’ll just up the exercise and start eating a little healthier (which isn’t a bad thing I guess!).

Still, as a woman, I must admit that it annoys me that I have to (literally) make the decision between my brain and my beauty.

Having noticed friends facing similar weight-gain issues, I’m betting that the pharmaceutical company that manages to create a mood-stabilizing or anti-psychotic drug without this self-esteem blowing side-effect will have many satisfied customers.

What are your expriences with medication and side-effects?  What steps have you taken to counter them?  We’d love to hear from you!

Life’s a game, you’re the quarterback.

Despite being Aussies, our household is in the grip of NFL fever at the moment.  My husband, who spent part of his childhood in St Louis, Missouri, has passed his love of the sport on to our three kids.

Picture of two year old trying on NFL helmetEven our four year old daughter – who is as girly as they come – can recognise all 32 teams in the NFL, by the logos on their helmets.

This week, while watching Sunday night football (which for us in on a Monday), my six-year-old son explained what the ‘end zone’ was to me.

Basically – for those of us from Australia – this is where the team needs to get the ball to score a touchdown.

Notice the key word here: team.

Unlike Aussie Rules Football, NFL teams have a LOT of players.  Each of the 53 players has a distinct role and responsibilities – linebacker, quarterback, wide receiver and so on.

At the heart of each team is the coach – responsible for designing ‘plays’ (strategies to help the team get the ball to the ‘end zone’).  Players work hard to memorise huge folders full of different ‘plays’ before they are called out.  If they don’t, they risk not only embarrassment but serious injury.

Watching the Panthers vs Patriots this week, my mind drifted and I started to think of myself (as someone with bipolar disorder) as a quarterback and my support network as my team.

At the helm is my psychiatrist – acting like my coach and working to map out ‘plays’ or an action plan that will see me get into the ‘end zone’ (a.k.a stay well).

As quarterback, I’m usually in control of what happens around me – giving directions and communicating well with my team.

However, in the event I become unwell, I need to rely on my teammates to rally around me, and my coach to step in and call a ‘time out’ (possibly in the form of increased medication or a hospital stay).

Although it might cause initial angst, no player would begrudge his coach for putting him on the bench if he was injured.

Unlike us tough Aussies – who play with only a mouthguard – no quarterback would go out on the field without his helmet and padding.  So too, I don’t go without my daily preventative medication, that protects my most precious asset (my brain) and keeps my bipolar disorder in check.

So there you have it…. the MOST unsporty woman on the face of the earth has just written a blog comparing herself to a quarterback.  I can’t wait to see my husband’s face when he reads this!

Are you surrounded by a good team?  Do you follow the strategies or action plan set out by your psychiatrist?  I’d love to read your comments!

Taking anti-psychotics during pregnancy: is it safe?

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Women with bipolar disorder are no different from other women around the world.  Being diagnosed with bipolar doesn’t stop the desire to have a baby, or add to our family.
In the lead up to their pregnancy, most women with Bipolar Disorder are advised to go off all medication.
Yet, what about those of us at risk of relapse if we stop taking our prescribed antipsychotic medication can be detrimental to our health.  Or for those whose pregnancy was unplanned, and may have already been taking antipsychotic medication before they discover they are pregnant?
Are we doomed to rest of our pregnancy worrying about the impact on our unborn baby?

The National Register of Anti-Psychotic Medications in Pregnancy (NRAMP) is an observational, nationwide study based in Melbourne, Australia, that is aiming to provide a better understanding of antipsychotic medication use during pregnancy, birth and the first year of a baby’s life.

This world-first, innovative study will give women taking antipsychotic medications, and the medical profession, with the information we need to make informed decisions before and during pregnancy.

I participated in this study during my second and third pregnancies.  The outcome?  Two very healthy babies and no signs of the mental illness I endured after the birth of my first baby.

Here’s the lowdown on this great research project:

What does NRAMP aim to achieve?

  • Provide a better understanding of antipsychotic medication use during pregnancy, birth and for the first year of the baby’s life;
  • Allow for the development of evidence-based guidelines for the best use and effect of antipsychotic medication during pregnancy, birth and the postnatal phase;
  • Assist healthcare professionals, and women with mental illness, to make informed decisions about appropriate treatment options, and encourage safer outcomes for both mother and baby, during pregnancy, birth and the postnatal phase;
  • Enhance our knowledge regarding the care of women with mental illness during pregnancy, birth and the postnatal phase.

What’s involved in the study?

Through regular phone calls and research, NRAMP follows the journey of mother and baby during pregnancy, delivery and for the first year of the baby’s life.  The study is designed to collect and record information on maternal and neonatal health and wellbeing during this time frame.  It is not designed to provide treatment recommendations, make mental health diagnoses or pass judgment on any individual.

Who can participate in NRAMP?

  • Women who are taking, or have taken, antipsychotic medication during pregnancy;
  • Women who are pregnant or who have had a baby in the last 12 months;
  • Women who reside in Australia;
  • Women who are able to provide informed consent.

How can I join NRAMP?

Referral by your clinicians: Healthcare professionals can refer potential participants to NRAMP. Clinicians are asked to briefly discuss the study with appropriate patients, and to ask their consent to pass on contact details to NRAMP research personnel, who will then contact the potential participant to discuss participation in the study.

By self-referral: Women who are interested in participating in the study can contact the NRAMP researcher personnel directly.

Contact details:

Ms Heather Gilbert, Senior Research Nurse

Phone + 61 3 9076 6591