Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish

Insurance Funding Request

Did you know Firefly products may be funded by your insurance?

Learn More
Back to Firefly Blog

The whirlwind of epilepsy

The whirlwind of epilepsy

A couple of weeks ago, whilst Jaxon was still in bed I was carrying out the arduous early morning routine of preparing medication and feeds for the day.

He was still hooked up to his sats monitor, he usually is when I’m not in the room with him.

Then the beeping started.

I waited a few seconds before succumbing to the urge of needing to check he was okay.

What I walked into, I was neither prepared nor ready for.

Jaxon was having a tonic clonic seizure.

His epilepsy is refractory and very complex following a diagnosis of infantile spasms in May 2019 that we were never fully able to control.

But tonic clonic seizures, the type that you often see on the TV, are rare for him.

They’re the type of seizures I have to be prepared to give rescue medication for but in that moment I went into a full panic seemingly forgetting everything I needed to do.

I felt myself crumbling as I fumbled for my phone to try and film some of what was happening.

It may sound unusual but it’s handy to have a minute or two of video evidence to show his team so they know what we’re dealing with.

I had hoped once I’d stopped recording that the seizure would’ve stopped but it hadn’t.

I have roughly a five minute window before I administer rescue medication but both his sats and heart rate were dropping.

I panicked, I called my mum.

But less than one minute into the call I said I need to call an ambulance and cut the call off.

As I made the 999 call I was already prepared for what they would say. “Is the patient breathing?” followed by “is the patient awake?”  

It’s a routine I’ve gone through many times since the birth of my child so I know exactly what to expect.

“Is the patient breathing?” the operator asked me. “Yes he’s breathing, yes he’s awake but he’s having a seizure and it’s not stopping, please send an ambulance, he’s two years old, please help me, please.” I begged.

How I managed to fumble my way through the call I do not know.

I was hysterical. I thought I was going to lose my child in that moment and there would be nothing I could do about it.

As I was on the call I begged Jaxon to stop fitting, I just needed him to be okay.

I ran to the door to open it and ran straight back to him.

The operator was warm and calming but I knew she could sense the panic in my voice.

She kept telling me how well I was doing but I felt like I was failing him.

I was counting down the seconds, do I give the medication? Do I wait?

He’d have brief moments where he would seem to stop then he’d go straight back into it again.

It took all of about four minutes for the rapid response paramedic to arrive although it felt like about four years.

No sooner had he entered Jaxon’s room, he stopped seizing.

The relief crashed into me and I felt my legs begin to buckle.

I had hold of the rescue medication, ready to administer it but I was so thankful I hadn’t needed to give it.

His heart rate and sats started to correct themselves again whilst Jaxon looked at me seemingly wondering what all the fuss was about and who this stranger was in the green and yellow uniform stood over him.

Shortly after, the paramedics arrived and despite the fact the seizure had stopped, it was agreed that it would be in Jaxon’s best interests for him to be checked over in hospital.

So we headed there in the ambulance.

We were only there a couple of hours and luckily we had a chance to catch up with Jaxon’s paediatrician who made a couple of small alterations to his seizure medication.

As we arrived back home and I carried Jaxon into his room, I was instantly reminded of the fear, devastation and pure helplessness I’d felt that morning.

Once I’d safely put him down I broke down in tears.

I felt myself being consumed by grief and anxiety that this could happen again.

You can never truly prepare yourself for the moment it happens again, you just have to dig deep to find a strength you likely didn’t even know you had to simply keep going.

You keep going in the hope that it won’t be today, tomorrow or even the day after that you’re faced with a challenge so frightening that you feel so powerless to control.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Louise Cheetham

Meet Our Blogger

I live in Stockport, UK. I have Borderline Personality Disorder and Generalised Anxiety Disorder. After years of therapy and getting back on my feet I became a voluntary peer support worker supporting others with mental health issues. Then Jaxon arrived and my life changed forever.

View Emma Louise’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 6 months on

Purchases on $99+

US Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of $99+:

No Interest if paid in full in 6 months on purchases of $99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 6 month period.
  • No interest will be charged on the purchase if you pay it off in full within 6 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00.
  • Individual items that are less than $99 qualify for special financing when combined for a total of $99 or more in a single transaction.
  • Multiple separate transactions of less than $99 per transaction cannot be combined to meet the minimum purchase amount.

Purchases of $98.99 or less:

Buy now and pay over time with PayPal Credit when you spend $98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • If approved, we start you off with a minimum credit line of at least $250. See FAQs for more info.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00. See Terms and Conditions tab for more info.
  • If you miss a payment your late fee could be up to $38, even less if it's your first time. See FAQs for more info.

Please wait...