Additional Needs

Epilepsy and Medical Emergencies

Posted by Ceri-Ann Brown on 5th June 2018 Additional Needs, Advice & Support, Disabilities

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I was amazed and humbled by the response I received from that post, but also saddened to see how many other people it resonated with that have been on a very similar journey.

A great deal has happened since that post that I wrote only a month ago.

It is surprising sometimes just how much can happen in our world in just a week or two.

For those who didn't see my post - Amy had a big prolonged tonic clonic seizure recently.

She hadn't had seizures since birth, and though I was forewarned they could potentially return, I had naively assumed we were out of the woods and that we had in fact been dealt enough challenges!

How wrong I was.

My post concluded with my hopes of this being an isolated incident and that hopefully things would carry on as normal.

But how boring would that be?

Of course, that's not what happened!

We were seen for a short EEG initially.

Our epilepsy nurse raised concerns that this would perhaps not be enough and that we may need a 24-hour EEG.

The EEG was conducted and we were told to wait for 2 weeks for the results and that there is nothing they can tell us there and then.

So once again we played the wait and see game and hoped hard that nothing was picked up.

I sort of forgot about the whole thing and continued to immerse ourselves in our busy lives.

We were at a barbecue with friends and we had noticed that Amy wasn't 100%.

I attributed it to hay fever and kept my eye on her.

Over the next hour she started to spike a temperature, become very lethargic, and have a raised heart rate.

Instead of delaying the inevitable we took her to hospital to be checked over.

We've done the whole chest infection game time and time again.

We knew it had to be this.

So, we told the doctors she most likely needed oral antibiotics and that we would like to manage the symptoms from home.

The doctors were in agreement with us and said they would complete one final set of observations on Amy and send us home.

They checked her sats levels (blood oxygen) and they had out of nowhere dropped to 80.

Dramatically, the doctor ripped the discharge letter up in front of me and the nurse immediately began putting Amy on oxygen.

Her sats weren't going up in spite of the oxygen and suddenly I found myself getting pushed to the back of a group of staff quickly performing medical intervention on my child.

I was petrified.

Once given a nebulizer and humidified oxygen she stabilised, blood gases were checked, a canula was inserted (after many unsuccessful attempts) and by 11:30pm I had set up my little camp bed next to her and could finally begin to breathe again and take stock of what had happened.

Just as Phil (Amy's dad) and me had time to process it all we were told that her assigned paediatrician happened to be on shift.

We were pretty delighted as it is always good when someone who knows your child's entire medical history is around.

"The results of Amy's EEG are back." She said. "It showed a lot of unwanted electrical activity and we recommend treatment for epilepsy right away."

I was dumbfounded. We both were.

Still reeling from the severity and abruptness of her chest infection symptoms, we were once again accepting another unexpected, and potentially life-threatening diagnosis for our little girl.

Fast forward a few weeks, and things are tricky. Initially they were fantastic; all the unusual symptoms of her seizures seemed to disappear, our happy little girl was once again focused, alert, and loving life.

But as she has become used to the dose I am starting to see these symptoms creeping back into our daily lives.

Two nights ago, she was having her usual pre-bedtime refusal to sleep tantrum.

She went from angry and distressed to unresponsive. Her eyes began to twitch, her lips flinching, her body mildly convulsing almost exactly how she did during that first shocking incident.

It was happening again.

I tried hard to regulate my breathing.

I hate how the only thing you can do during this time is stand and watch and hope that it will pass.

No one should have to watch a loved one endure this.

Like before, I immediately began to film her so I could send it to her paediatrician.

I had rescue meds ready and was timing the whole incident.

By the third minute she seemed to regain awareness and stop seizing.

She let out an exhausted sigh and drifted off to sleep.

She then stayed asleep for the remainder of the night not waking once.

I have since sent the video to every specialist possible and have been told that a repeat EEG may be needed, along with the introduction of another medication.

I feel fortunate that the times this has happened I have been there by her side.

I also take comfort in being told by people that quite often a seizure is more terrifying to watch than it is to encounter.

This doesn't provide much solace as I feel I will never truly know how someone feels during these times, but I have to hold onto any positivity I can and stay strong for her.

I have found myself more physically and emotionally exhausted than ever before.

I have had my anxiety medication increased and am looking forward to my first session of counselling next week.

I am so desperate to get myself fighting fit and better for her so I can always be on alert for when she needs me.

I have seen now that these seizures can be dealt with, we just need to continue on our path of trial and error to fight for having our Amy as the happy, alert, curious little girl that she is, and deserves to be.

To everyone out there who has been dealing with epilepsy way longer than us, I take my metaphorical hat off to you all.

So much of our time has been spent making changes to Amy's tube feeds and dealing with her complex gastro issues, and I had never really considered that we would end up on embarking on a neurological extravaganza on top of this.

I used to always marvel at the families who deal with epilepsy and wonder how they deal with the whole thing, and I feel that we are only now seeing a snapshot of what some people must go through on a daily basis.

These kids are so incredibly resilient and strong,

I'm in awe of how Amy just plods on and has that drive to love her life in spite of all that she has going on.

Wishing you all a happy half term of memory making and smiles.