Saturday, 8 August 2015

Seize control: the impact of your child having a neurological disorder

You might remember my good friend Lorna who has written before for Glasgow Mummy? I've invited her back to share her story on the diagnosis of her baby girl having epilepsy and how this has changed her perspective on what matters...



"The EEG has confirmed that Amie is having epileptic seizures with loss of consciousness. The words hit me like a punch in the face although I didn't fully take it in.

In May this year whilst still on maternity leave, my youngest daughter Amie, aged 5 months, started having seizures out of the blue. At first I didn't know what they were and I've since learned that seizures can present themselves in many different ways. I noticed she was unresponsive at times and the colour drained from her face. It turns out she was having focal seizures and stopped breathing for up to a minute at a time. After a spell in Yorkhill Children's Hospital she was diagnosed with epilepsy and will now be on anti seizure medication for some years.

I thought I knew what epilepsy was, but turns out each person's experience of epilepsy is unique, and it mattered more now that it was my own baby. I thought I was a resilient, strong person and suddenly felt helpless. How was I going to return to work? How would our family cope financially, logistically and emotionally? What if she has a serious chromosome abnormality which means she can't lead a normal life, unlike thousands of others who have this condition and manage it successfully? Many of these questions still worry me, and I don't take things for granted as much as I used to. In particular, I was overwhelmed by the support I received from my family, friends and my employer with flexible policies like emergency and carers leave. 


We are still waiting on test results, her seizures are still not under control, the last one being 5 weeks ago, and they have progressed to tonic-clonic seizures where her limbs shake. What I have discovered is that there are many families out there whose lives would be improved if they had an epilepsy seizure alarm which triggers if a nocturnal seizure occurs, alerting us to check that they regain breathing and consciousness. This helps prevent sudden unexpected death in epilepsy (SUDEP). These alarms retail at £500-£700 each. They are not available on the NHS and two charities who donate them to families have waiting lists of over 250 people at this current time. So I've decided to fundraise for this cause and welcome any contributions."  



If you would like to make a donation, please click on the link below: 
http://www.virginmoneygiving.com/SomeoneSpecial/amiethebear

or you can follow Amie's story and progress here at www.facebook.com/amiethebear


More information on the two charities can be found here:
www.muirmaxwelltrust.com      



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