It has been some time since I wrote on my blog for many reasons. Some people tell me often how much they love reading my blog and then there’s others who don’t need to say anything because you see in their eyes that they feel I am oversharing. So sometimes I take a break. For me and for you.
Thankfully for them I’m nothing like Constance hall and don’t feel the need to share as much as she does!
So, what is it that prompted me to share this particular part of our lives with you? We recently received a diagnosis for one of our children and the team looking after her have told us how vital it is for us that the people surrounding us know what is happening.
As they say “It takes a village”.
A few months ago we were preparing for a rather important visit to the Children’s Hospital for our Lucia. As most of you know she suffers chronic pain in her legs. From the outside she looks like a “normal kid” and appears to be able to do everything most kids can do. On the inside, she pushes herself to a threshold of determination and pain that only those very close to her get a glimpse of. When she crashes, she crashes hard and fast and can take days to recover. She had recently stopped walking for a few days and was unable to bear weight. It was devastating to watch and we were hoping for some answers.
This appointment was causing us all immense stress as we had been prepared by her medical team for a diagnosis that would be life changing. Somehow, we were spared that change in life and got no further diagnosis. In fact, we actually got no real answers at all but were told to continue with managing her pain for the moment whilst yet another team confers and decides if there is something else they can do in the future. This is the merry-go-round of life for our darling Chi Chi.
The day prior to this appointment I received a call from the school to say there had been a serious incident involving Indiana. It had been documented and they would like to discuss it upon our return from Brisbane. We were assured she was okay.
Indiana is our healthy one. The one who smiles so much her cheeks squish with delight and her eyes sparkle like stars. Every day she is excited to be awake, to start the day and be delighted by all that life has to offer her. She will try anything and gets excited over everything. She does tap, ballet, jazz, swimming, guitar, craft, yoga. She is forever moving and loves every moment.
After I returned from Brisbane I met with the school. All Indiana had told me was that her teacher kept telling her that she had been crying and upset but she assured me she wasn’t. I really had no idea what this was about.
Little did I realise this was going to be life changing.
Indiana’s teacher explained to me two separate episodes in which she was crying but there was no sound and she was totally unresponsive. Her eyes were fixed on a particular spot and they could not get her to redirect, talk, respond. After she did respond she had no recollection that this had just occurred. These episodes lasted from 2mins to 15 mins. I happened to meet with her teacher just after a 15 minute episode occurred. Very gently it was suggested that this may be neurological and we should get a medical assessment.
I happen to have a wonderful friend who is an emergency nurse. I find that nurses are always the last to panic when you tell them about a medical condition but when I told my friend she strongly suggested I make an appointment and get her checked out.
Our gorgeous GP is another friends husband. (In the country everyone seems to know everyone and this is such a positive part of our community). Our GP explained to me that it sounded like Indiana was having what we call absent seizures and she would need to see a specialist asap.
Within a few days we were on our way up to the Gold Coast to meet a specialist who would very quickly become a new part of our life. By the time we visited him Indiana had had about 5-6 absent seizures that we knew of. She smiled and laughed through the consultation and she told him about how she often forgot things. This has been something we’ve been working on for the past six months as she struggles to retain information.
The specialist explained to me that Indiana seemed to be having absent seizures and at this stage we would keep a diary of her seizures and have a few more tests and reassess in a few weeks.
I walked out of our appointment quite relieved that it all seemed quite minor and that she would probably grow out of it.
Within a few weeks however our gorgeous outgoing Indiana was having so many seizures we could barely keep track of them. It impacted every single part of her life, our lives.
I called her specialist one day recently in tears and explained that she was having clusters of seizures and she could barely recall what she had done during the day. She was forgetting to eat at school, was found out of bounds, fell off play equipment and hurt her arm because she had a seizure whilst balancing on a wobbly balance bridge, could not get to sleep at night just to name a few. He was quite concerned and explained to me that she needed to start on medication immediately.
It was explained that if her seizures continued to cluster they could turn into grand mal seizures. We saw the beginnings of this occur recently when she was deliberately sleep deprived to check the electrical currents in her brain. It was terribly hard to watch.
We have rapidly learned there are no easy seizures.
Our daughter has epilepsy.
We could not have stopped it’s onset if we tried. She was conceived with a genetic make up that would always have triggered it to occur. Childhood epilepsy is generally diagnosed between the ages of 7-9 years and if we are lucky she will grow out of it between the ages of 16-18.
There are no family members that have it.
It is not caused by a virus.
It is not contagious.
Epilepsy affects about 4% of the Australian population and presents in it’s own unique fashion for each person.
What is a seizure? A seizure is a sudden, uncontrolled electrical discharge in a group of brain cells (neurons). During a seizure the neurons can fire up to five hundred times a second – more than six times the normal rate and for a brief period. This can cause strange sensations, emotions and behaviour or convulsions and loss of consciousness.
So why am I writing this blog again? To bring awareness of epilepsy.
I recently realised just how lucky we were when Indiana had to have an MRI on her brain. Because we live in a small town we happen to know nearly everyone who works in the radiology department at our local hospital. One of the Dad’s from our school (who is just a sensational guy), talked Indiana through her MRI. He made it an exciting adventure for her. Somehow he managed to get her to stay completely still for over 30 mins and she is immensely proud to now have her own pictures of her brain to show everyone at school.
Epilepsy isn’t just about seizures it’s about managing the medication that is prescribed to manage the epilepsy. Somewhere in the past few months of having seizures Indiana’s life has been severely affected. Learning is difficult, concentrating is difficult, remembering is difficult, keeping friends is difficult, her love of dancing is difficult.
The medication causes severe mood swings. It causes fatigue but doesn’t let you sleep. It makes you cranky but you don’t know why so even that makes you cranky. It ,makes you hungry but then your belly hurts. It is relentless.
We recently went out to the shops when a sudden anger outburst occurred over something trivial. I had looks of disgust as I tried to give her what she wanted but that didn’t stop her anger anyway because she had already changed her mind. I even had someone mention that school causes those attitudes and I should nip it quickly.
All I wanted to do was burst into tears because I knew she was so out of control regardless of what I said or did wouldn’t help and I needed to get her home quickly. I picked her up hysterical and managed to strap her into the car whilst she howled the entire drive home. This particular event lasted 1.5 hours. She fell asleep as she was having continuous seizures.
Epilepsy has changed my daughter. She is not naughty. She does not have attitude. She is not spoiled. She happens to be going through a very tough time right now and what she needs is understanding, kindness and love.
Those who know me, know that I am my children’s biggest advocate. Recently I became an advocate for something I knew very little about. Be warned, your news feeds will soon be ripe with epilepsy information so you know how to react if you see my daughter or someone else’s child having a seizure. So you know how to comfort her, give first aid if required, calm her and teach her that what is happening to her is okay.
She will be okay.
Today I feel lucky. Lucky that we have epilepsy and not a medical condition that can’t be helped with medication. Lucky that we live in a community who will gather around and assist any way they can. Lucky that her school teacher picked this up and continues to ensure each day at school is a brilliant one for her. Lucky that she realises her brain needs a rest from dancing, from guitar, from yoga. Lucky that her eyes have begun to sparkle again this weekend at the thought of going back to school. Lucky that her smile has reappeared and her anger is hopefully subsiding. Lucky that she trusts that we as her parents will hold her hand and guide her through this new life path that we are walking.
We’ve got this Indiana xo