Abigail our Angel - Dravet- Epilepsy- Seizures

At 3 months old our baby girl Abigail endured her First ever seizure. It was brought on by the common cold and lasted a total of 45 minutes.

It took 6 minutes for the ambulance to arrive and every second I held my baby girl felt like an eternity. The paramedics injected her with medication, put her on oxygen and we rushed off to the emergency department.

At the hospital we were rushed into the Emergency resuscitation room where 20+ medical staff stood. It was like a scene from a movie.

Alarms and people hovering over her and calling out the details of what was taking place and what to do and her being poked and prodded to get an IV in.

I sobbed and sobbed praying she would come out of this.

And she finally did.

Over the next 24 hours we conducted every test under the sun to try to find the reason for this seizure. A spinal tap being the worst of it, where they sedated her and put a gigantic needle right into her back. Hearing your baby scream like they’re being tortured was the most horrific experience ever.

All tests were negative. Even the EEG.

The doctors sent us home hoping this would just be a 1 time occurrence.

Until the next illness approx 3 weeks later.

and then every month from there.

And now we see seizure activity daily.

We knew she was having seizures with illness, but we were under the impression it was something she would likely grow out of. Our neurologist one day approached us and suggested we do a genetic test for epilepsy. Hayden and I both thought it would be a waste of time because no one in our family has Epilepsy or have experienced seizures before.

Until, the results came back… Positive for a Genetic mutation of the SCN1A gene.

And our entire world was turned upside down. And still is.

Dravet syndrome. If you Google it. You are sure to feel nothing but devastated and hopeless.

We have tried CBD, we have been to naturopaths and holistic doctors. We have tried modern medicine, we have tried diet.

None of which have taken away her seizures.

In fact from that date, they have only increased and so have her triggers.

Atm it feels like Abigail is basically allergic to the outside world. She is a modern day bubble boy.

She catches every illness, she can seize from heat, direct sunlight, patterns, a sudden temperature change like being in the grocery store then coming out or having a simple bath. She will seize from having too much fun or being overexcited.

This is a cruel cruel syndrome. And not just for Abi. Although our precious baby endures the most. Her parents mental health is tested day after day. My (Stacey) anxiety is always peaking with each activity we do or who we see and where we go and I get extreme mum guilt for the things I should have known, could have done better, didn’t do quick enough or should have seen coming. For all the times I have to say I’m sorry Son (to her brother Nelson) I can’t play with you right now because Abi isn’t well, we have to stay inside, we can’t go and ride your bike and all the times I have to leave him to be with Abi at the hospital.

The hours I spend each night researching and emailing and all the times I miss out on with my husband and friends and family.

I write this to you in hospital with Abigail sleeping on me after her 10+ time having rhinovirus whilst she has a fever and is having small jerks on me and I hold her like a ticking time bomb praying the fever goes down before we have a seizure.

This is the everyday reality for millions of families around the world who have a child with Epilepsy.

Grief and Joy reside here, don’t get me wrong. But this is a hard hard road to walk and even more so in Australia and even more so again with Dravet as it was only discovered 30years ago and affects 1:15,700 which is actually a shit load.

So there is currently no cure and it is a very drug resistant syndrome, so there isn’t much reprieve.

What I do know is that, I am a part of the Dravet parent community (Facebook) and there are parents on there fighting their little butts off trying to put together some pieces of this puzzle.

And everytime you mention to a neurologist that you are a part of this said group and you want to try anything other than the anti epileptics they prescribe, you are shut down and told- “this is a genetic epilepsy, so why would this test or protocol be worth your time and money”.

Because it won’t alter the gene.

I ponder… but what if this was your child!? Would you not stop at nothing!?

I don’t want to speak for the entire dravet community, but the consensus, or the question most asked by newly diagnosed parents is.. Do you think our children are regressing because of the syndrome or do you think the medication we keep on stacking onto eachother may be contributing to such regression!?

And each time the parents respond with.. We really can’t be sure, but I do know when I … took away a drug, started a ketogenic diet, changed to another drug.. sometimes there would be a massive cognitive gain or even a reduction in seizures.

If you read any leaflet of these drugs you will see that each one can also cause the following side effects.

infection, neurosis, drowsiness, asthenia, headache, nasopharyngitis, nervousness, abnormal behavior, aggressive behavior, agitation, anxiety, apathy, depersonalization, depression, fatigue, hostility, hyperkinetic muscle activity, personality disorder, emotional lability, irritability, laceration, and mood changes. Other side effects include: tonic clonic epilepsy, dizziness, vertigo, decreased neutrophils, depressed mood, neck pain, and pain.

Like what the f?

When we started taking this drug we seen her seizures increase and we’re told.. “well if she wasn’t on it, she may actually be having more. This is just Dravet progression”.

And who the hell knows!?

All I know is that i have wanted to start the ketogenic diet from day 1 so I could see her baseline and go from there. But it has proven to be soo difficult In a society, generation and country where the easiest and most beneficial route to the person seems to be the way you are persuaded.

Yes keto will have its own set of side effects and no it isn’t going to cure her but for us it sure seems like the best starting point.

The lines of NDIS are so blurry for Abigail atm as she has not yet seen any regression as she is so young so everything is out of pocket.

But my main reason for wanting to set up a go fund me account was because.. Here in Australia we truly have such limited resources compared to the US. They are far more ahead of us in terms of Testing available and trials being run.

There are quite a few tests and protocols taking place within our Dravet community for those living in the USA and I would like to be the pioneer for Australian families and get processes in place for us Aussies to access these things that are proving really helpful.

There are trials for gene therapy coming through the pipeline but we don’t know how many years away these are especially for us in Australia. We just need some reprieve.

I know I have a purpose in life and Im working towards it.

Abigail is our beautiful angel, sent to earth to teach us things. Even if she has to endure this. I like to believe that regardless, she chose this life and our family because she knew the love she would experience being our girl and Nelson’s sister, would be one she had never experienced before. God we love her so dam much.

Please if you are able to, in anyway, no matter how small, help at all. We would be eternally grateful.

The McCaa family xoxox