My Daughter Amy....by Margie

In the movie “Forrest Gump”, Forrest said –

‘My mama always said life was like a box of chocolates. You never know what your gonna get.’ 

 In the beginning I think my box was filled with all hard centres it certainly felt that way!

Amy Louise was born at 37wks by Caesarean Section following a difficult pregnancy complicated by red degeneration of a large fibroid. She was my second child and 3 years younger than her brother Matt. In Nov. 1990, 3 weeks before her second birthday I found her lying flat on her back flaccid and unresponsive.

Amy went into status epilepticus and was air-lifted from the Maryborough Base Hospital to the Mater Children’s Hospital where we spent the next 4 weeks. This was the first of many admissions for Amy.

Amy has refractory frontal / temporal lobe epilepsy which has been persistent and resistant to a wide range of anti-convulsants. Her epilepsy has never been totally controlled on treatment and her seizures take several forms.

One is absences - which may be associated with unsteadiness on her feet, incontinence, and often it’s as if the ‘lights are on but nobody is home’. 

The incontinence became an issue at school for Amy and was made more difficult because her sense of smell was also affected by the seizures.    She was unaware of her incontinence and her feelings were often hurt when someone would remark

“Something smells – it’s probably Amy”.

 Amy also has complex-partial seizures, which involve the left side of her body and she has more major seizures with generalised tonic-clonic activity with left sided emphasis. These major seizures usually occur at night.

There is no doubt that Amy’s epilepsy has made a significant impact on herself and the family.  Amy has had extreme difficulty with learning and has required one to one assistance most of the time in the classroom.

She has had to ‘over learn’ any concepts if she is to retain them. This has had widespread educational implications.

As a result of her epilepsy Amy experiences memory difficulties and difficulties in processing information.

Turning on the shower still brings Amy to grief. Ensuring the green tap is turned on first when you’re getting in and the red one is turned off first when you’re getting out.

For such a long time I struggled with feelings of helplessness and hopelessness.  You learn very quickly how long 10seconds really is, let alone the eternal time it takes to have a prolonged seizure.

It doesn’t help that seizures are so unpredictable. This only added to my feelings of emotional fragility

and insurmountable loss of control over this disorder. 

As a registered nurse I felt very vulnerable.

The expectation from many colleagues, family and friends was that I would ‘know’ things and ‘cope’ with things or I that I was perhaps ‘over-reacting’ to things.

I often found this was case when Amy was admitted to hospital where I often felt abandoned by fellow members of the ‘caring’ profession that has been my passion. 

Others would say to me ‘There is a light at the end of the tunnel Marg’ and I would think -

‘Yes it is probably a train coming the other way!!’

I have been very fortunate indeed to have a wonderful paediatric neurologist who should be up for nothing short of ‘sainthood.’

His holistic approach, patience, understanding, gentle-manner, warm sense of humour and sincere concern for Amy, Matt and myself has enabled us to keep it all together. He has always involved me in the decision-making which I believe is essential in the ongoing care of Amy.

When Matt was 7 he had some silkworms and I had been at him to clean out their box. He went and did this and then came rushing out with a look of sheer horror on his face. My silkworms have epilepsy he exclaimed. The next day we had an appointment with the neurologist.

Matt got into the car with his box of worms. I’m taking them with me he said and I tried in vain to convince him otherwise.   Matt proceeded to put the worms on the Drs. desk. “Hi Matt what have you got” asked the neurologist. “My silkworms” he replied. “They all have epilepsy” he exclaimed.

The poor neurologist could not believe his luck. “How can you tell Matt?” he asked as he reached for the tendon hammer and I shook my head.

Well I was putting them back in the box and they did what Amy does when she has a seizure and wriggle all around. Matt asked should they have medicine.  No Matt I think the mulberry leaves will be good for their epilepsy was his reply.

The next day I heard Amy crying. On investigation I found Matt feeding Amy mulberry leaves and telling her to eat them as they would be great for her epilepsy. 

We were always encouraged by the Neurologist to be open and honest about epilepsy. Amy was always up front and often referred to her disorder as “Epi pepsi” which I think may also account for the fact that she was only invited to her first ever birthday party at the age of 15.

Adjustments needed to be made emotionally, socially, physically and financially.

Emotionally it is like a roller coaster ride - and I have never been a thrill seeker. 

Socially I had less time for everything and everybody especially myself

Physically I was on vapour and so totally exhausted that it hurt to think.

Financially I was in a mess  

To make it worse the government forms, which needed to be filled out to obtain financial assistance, did not consider epilepsy - a disability but a medical disorder.

Epilepsy was not classified as physical disability however when Amy had a tonic clonic seizure she physically couldn’t do anything except breathe!

I have learnt to take each day as it comes and to trust myself and my instincts and accept that epilepsy is a part of our lives not the end of it.

Amy is currently achieving in a special education program. She has always been a very happy child with a warm and effervescent personality. Amy has a natural gift for dancing and enjoys classical, tap and jazz. She gained ‘Honours Plus’ in two exams last year and won the Student of the Year Award at her ballet school. 

Amy has been through a multiple range of anticonvulsants since she was 2 years of age.  For about 8 years Amy was fairly stable on Sabril  and Lamictal. Amy’s peripheral vision began to be affected by the Sabril so we weaned her off this and moved on to Gabitril. We used Lamictil and Gabitril for about 18 months. Over a 2 year period she learnt to catch the train to and from school

Between August and October last year Amy was having a lot more breakthrough tonic clonic seizures at night which left her wiped out the following day and quite flat the day after that.

She missed more and more school as well as her dancing. She put on a lot of weight, becoming very tearful, withdrawn and self conscious.

At that time I had been offered a wonderful opportunity to embark on a new career which was very exciting but because of Amy’s increasing instability I felt that another opportunity was to elude me.

Following a number of seizures while travelling on the train, Amy lost all confidence and refused to go to school. 

In the November we started on Topiramate with Lamictal and  began weaning off Gabitril.  Amy did have jumbled speech, and word – finding difficulties for the first three weeks after starting the Topiramate but this was fairly transient.

By the end of December she had lost nearly 2kg in weight and I noticed she was much brighter in the mornings, her eyes actually sparkled. By the end of January her tonic clonic seizures had halved. I kept thinking it was the honeymoon phase that I often experienced when starting a new drug.

At the beginning of May the staff at the school commented on how much Amy was improving in her schoolwork and catching up to those working in the groups ahead of her.

 It is now 9 months and Amy continues to improve.

* Her writing has become much neater and

* Her vocabulary has broadened and she has been using   quite complex words. She has started to read books and although she struggles with writing her printing is now very neat.  Amy has also regained her bubbly personality and confidence.      

Meanwhile I have been able to make a commitment to my career which has been of enormous benefit to all of us now only for now but also for the future.

These days there are new challenges for my little family.

For Amy they include, being liked, being equal and being independent. Her true colours are now beginning to shine through. 

For Matt who is 19 … well he is a typical 19 year old and life is now all about him!! 

For me…I have met some difficult challenges over the past 16 years and have survived to tell the tale!!!  I would not have held it all together without my faith, my family and my friends – and money cannot buy these things. I include in my friends the wonderful staff of Epilepsy Qld Inc. They have known us since Amy was 2 years of age and have always been a rock to all of us. They are truly amazing people. Several children who were Amy’s friends died as a direct result of their epilepsy. Amy was nine at the time and she asked the staff at EQI if she could sell badges and pens to raise money to assist EQI in the memory of her two little friends. Amy continues to do this each year.

Amy has enriched my life, her brother’s life and those with whom she has come in contact. Matt is still her best cheer squad and he is her closest friend. Her favourite saying is “If someone doesn’t have a smile – give them yours”

I have to say …the light stayed on at the end of the tunnel and there are now more soft centres in my box of chocolates. Thankfully so because Turkish Delight has always been my favourite.