Monday, 28 January 2013

Epilepsy & Behaviour (2)

I first posted on the reciprocal relationship between epilepsy & behaviour a year ago This post is on the same topic with a different drug.

At the end of last year I told how we'd got Chrissy back at last. Unfortunately her seizures took over and, just before Christmas, Keppra was introduced as an adjunctive antiepileptic to Epilim. Since then perfect seizure control has been achieved but her behaviour has become increasingly bizarre. Since Keppra's most serious adverse effects are behavioural, we need to closely monitor its benefit-risk ratio for Chrissy.

Ten days ago I agreed with Chrissy's doctors that we should halve the dose to try to achieve a better seizure/behaviour balance. Last week I thought things had levelled out when her ward manager said that she seemed much more herself. Trouble is he'd only called in to see her in passing, & appears to have reported a snapshot view. Other ward staff have reported similar behaviours to those we've seen - shouting, swearing,& inability to focus. Yesterday her nurse told me that she was too distracted to take her morning meds - although they somehow got her to take them eventually.

At the weekend we, too, were unable to get Chrissy to focus on the task in hand. We were dismayed to see how bad things had got. She had periods of being herself then suddenly exploding into staccato roars & shrieks: 'Mummy! Shut up! Bastard shit! Fucking bitch! I spit at you!' It's like someone with Tourette's Syndrome on overdrive. She either stalked us as if she was trying to goad us or took herself off to a chair on the landing, still shouting. These shouting episodes can last for an hour or more, and even when she settles she's still very restless and whingey.

On Saturday morning I had a struggle to get her to focus long enough to climb into the bath, take her tablets or eat her breakfast. She kept up a constant stream-of-consciousness commentary as if she was on speed. She eventually exhausted herself, & my patience. At one point she said: 'Chrissy's poorly & screaming.' (In fact we haven't seen any screaming, stripping behaviours.) 'Poor Chrissy,' I said, & signed: 'Are you cross or sad?' As she answered & signed 'sad' my heart melted & my irritation with her evaporated.

Eventually she sat cross-legged on her bed & said: 'Who's that? What's that name?' I followed her gaze to the foot of her bed. Did the pattern in the rails look like a face to her? 'There's no one here,' I said. 'Is it a witch?' she asked. (A new word she uses frequently but not always appropriately!) She leaned forward & pressed a gold circle in the pattern that looked like a button. 'It doesn't work,' she observed. Then she started shaking the curved rails at the end of her bed as if she expected to bring them to life!

Since all the medication changes Chrissy has been far more aware of everything around her but this was very odd. She then asked me to 'do' her covers, burrowed into them & said 'goodnight mummy.' I left the room & when I came back 10 minutes later she was fast asleep. It's unheard of for Chrissy to get into bed fully clothed without asking for her curtains to be closed, whatever the time of day.

All these changes in Chrissy's behaviour & normal routines make me feel very uneasy. It's as if her personality is being sabotaged.

I had first discussed the timing of the dose with her ward manager 11 days ago. We'd agreed that it made sense for the dose to be given in the evening, as most of her seizures are nocturnal. However, for some reason Chrissy's doctor had prescribed it in the morning. I am still waiting for him to review the prescription. I had also passed a message on to Chrissy's doctor to ask him to consider adding vitamin B6 as studies have shown vitamin B6 deficiency may occur with some patients on Keppra, and that its addition can curtail some of the adverse psychiatric effects. I'm still waiting for answers & hoping that this is a temporary setback that we can find a way through - otherwise we're on the roller-coaster ride of yet another drug trial.

I am a SWAN UK (Syndromes without a Name) blogger

Tuesday, 15 January 2013

Mosaic Down's Syndrome - My Latest Real Life Story

I first wrote about this rare form of Down's Syndrome for that's life! several years ago. Then in 2011 I heard about Claire's fascinating story, and wrote it up for Essentials Mag. Then it went in the Daily Mirror and now it's had a 3rd showing - this time in Bella Magazine!

Few people have heard of the condition, where someone has two or more types of different cells in their genetic make-up, It's often missed in standard genetic tests. Like mosaic patterns formed from many small pieces, Claire had two or more types of different cells in her genetic make-up. Around 13% of her cells had the extra chromosome 21 found in the more common form of Down's Syndrome, & the rest are normal.

When Claire’s mum, Beverley, gave birth to her, she thought Claire was a normal baby girl but over the years she became increasingly difficult to manage. Despite having a son a year younger than Claire who was fine, Beverley blamed herself & wondered where she was going wrong. Eventually, just before Claire’s 11th birthday, Beverley pushed for medical tests. Claire’s doctor organised blood tests to check her DNA and she was found to have Mosaic Down’s Syndrome, which is diagnosed in around 2% of people with Down's Syndrome.

Most mums discover their babies have Down’s Syndrome during pregnancy or soon after birth, & the news can be devastating. All Beverley felt was relief that it wasn’t her fault & Claire wasn’t a naughty child. Claire was told about her condition when she was diagnosed &, gradually, over time she came to understand what it was. Now she wears her Mosaic Down's Syndrome like a crown. She raises awareness about it and supports parents on social networking sites. She has even made short films about it.

Claire amazes Beverley with her independence and achievements. She has a 2:1 honours degree in media & lives alone in a small flat near her parents. She has even flown to America to give talks on Mosaic Down's Syndrome.

Beverley is extremely proud of her inspiring daughter and wonders how many other people are living with Mosaic Down's Syndrome who haven’t been diagnosed.

I am a SWAN UK (Syndromes without a Name) blogger

Sunday, 6 January 2013

How Chrissy became my Launchpad into Journalism

I'm not a great one for New Year's resolutions as I've never managed to stick to any but this time of year often brings us fresh perspectives. As you can see from this blog, I've been caught up with my struggles to get Chrissy better and to get her the care she needs - so much so that, recently, I've let other things in my life slip, like my journalism career.

I've had over 1000 articles published in Glamour, Woman, Woman's Own, Best, Reveal, Take A Break, Pick Me Up, Sun, Mirror and Daily Mail, among others, but in my mid-thirties when I started working as a freelance journalist I was untrained and inexperienced.

I had always enjoyed writing for pleasure but never dreamed I could write and get paid for it. In fact, like many mums of young children, I struggled to get paid for any kind of work! It's even tougher when your child has significant difficulties, as it's hard to get childcare, there are more medical emergencies and hospital appointments, and of course the dreaded school holidays! I took on various jobs from party-plan to medical secretarial work but never earned enough to make a significant contribution to the household budget.

Back then of course, there was no internet and I was always on the lookout for stories in newspapers and magazines about children with disabilities but everything I found was about better known disabilities such as Down's Syndrome or autism. I never read anything about a child like Chrissy, who then, didn't have a diagnosis - not even autism. Her Geneticist at Great Ormond Street Hospital told me that Chrissy wasn't unusual - they were unable to pinpoint a cause for problems in 30-40% of their patients. 'There has to be an article here,' I thought.

I bought a book called 'The Writers & Artists Yearbook,' to get contact details for all the magazine publishers, and sent around a synopsis about what it was like not to have a diagnosis or medical label for my child. I didn't even have a fax initially - I posted it out to commissioning editors on all the leading women's magazines.

Two magazines came back - Woman's Realm, which folded in 2001, and Woman's Weekly. I went with Woman's Weekly because they were the first to offer me a commission. I was honest with them about my inexperience and they kindly gave me a detailed brief to follow about how they wanted the piece written.

My first ever published story (Apologies for the poor copy. It's the only one I have!)

Disability Now also published our story. It's a shame that they will no longer consider pieces written by anyone other than the person who has the disability. It means that people like Chrissy, are given no voice in their publication.

The two magazines had a similar readership so Woman's Realm couldn't run it too but they asked if I had any similar stories. I did! I knew lots of women with great stories - some of them mums, some single - all happy to make a bit of extra money and see their story in print. My friend's story about being at loggerheads with her husband over whether to take their disabled son on a family holiday was my next published piece. I was also invited to an 'Ideas Meeting' at Woman's Realm. What an honour! I guarantee it wouldn't happen today - much more difficult to break into the industry. The commissioning ed took me under her wing as she was keen to plunder my contacts. In return she helped me to hone my feature-writing skills without stealing my stories or my bylines! I asked her if she could recommend any correspondence courses and she told me about one that she'd heard good reviews about - unfortunately no longer operating. While I was learning how to build a freelance journalism business, I was still getting articles published and getting paid for them.

I branched out into training, and wrote and delivered trainings on managing challenging behaviour using communication strategies. I also trained and advised aspiring young journalists at an FE college and worked as an external verifier for journalism courses at colleges and universities. Meanwhile, I did a stint teaching adults with learning disabilities at an FE college while gaining a Further Adult Education Teaching Certificate.

My career success gave me the boost I needed to approach publishers about my book idea. My self-help book 'Bringing Up a Challenging Child at Home: When Love is Not Enough' was published by Jessica Kingsley, London in 2000. Ten years later I wrote a chapter for a book published by the New England Journal of Medicine, entitled the ‘Genetics of Mental Retardation,’(Karger).

Chrissy's story continues with this blog. Did I really start it over two years ago?! It seems like only yesterday when I was grappling with HTML and the like!

Through this blog I've been offered some great stories but I also want to let you know that, although my own story is about raising a child with a learning disability, I would love to hear from you about stories on any subject!

To give you an idea, here are some topics I've written about and am looking for stories on:

Seasonal stories - currently those with a Mother's Day or spring/easter hook
Health stories - an unusual take on a common illness works well.
Funny, quirky, heartwarming & shocking real-life stories.
Age gap relationships.
Weight loss due to shocking photo.
Cheating saved my relationship.
Botched cosmetic surgery.
Strong fertility story.
Someone who found out partner was leading a double life.
Woman whose wedding went wrong, was engaged many times, or suffered any sort of betrayal.
Mum whose child has problems with alcohol or is very overweight.
Strong relationship or true-life stories that you can imagine reading in a magazine.

Alternatively visit my Facebook page to connect with me, see examples of my stories and get more info.

Look forward to hearing from you soon!

I am a SWAN UK (Syndromes without a Name) blogger