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This is my 'Why'!!!

Everyone, whether in business, sports, charities, etc has a Why. The reason behind their passion, it’s the fire in their belly and most of the time it’s what separates the winners from the losers.

Today I’ll share a personal story that makes up part of my Why. The backbone of my business. Some of you may have already heard about it but now you can have all the details.

This is the story of Nevaeh (Ne-vay-ah), my daughter and her little battle with what was diagnosed as a serious illness.

There is a fair bit of information in this so I’ve spilt it into two parts. When I mention seizures there is also link to a short clip of what that seizure is like. These clips are of my daughter back in 2009 and some aren’t too pleasant to watch. Enjoy, read with an open mind and really take on board the difficulties parents face when dealing with a narrow minded medical system.

Nevaeh (Ne-vay-ah) started out like any other child. She had a normal delivery and on time. She was breastfed for a few months and developed really well. Her speech came on very quickly and by the age of two you could almost have a full conversation with her. At two and a half she started Montessori and was able to count to 100 and also count to ten in both French and Irish. We thought we had a gifted little child on our hands.

Fast forward a bit to January 2009 and I'm doing CPR on my daughter at the side of the road. WTF??? At this point I'm a paramedic for over 3 years. Stationed in a very busy station and getting tonnes of experience. But when it's your own child, that shit goes out the window. Our protocol is if someone over 39 (I think) has a seizure, it's treated as a cardiac arrest (heart stopping) until it's ruled out. Why? Because if anyone has ever seen anyone go into cardiac arrest and I have on a number of occasions. The heart stops, so blood isn't carrying oxygen to the brain and the patient will have a tonic clinic seizure before going limp. So when I'm driving down the road. My little princess has a full tonic clinic seizure in the back of the car before going limp you can only imagine the shit going through my head.

We had been driving down the road with Nevaeh and the two dogs in the back and in mid conversation she just went into Tonic Clonic seizure (This can also be referred to as a grand mal). This was three weeks before her fourth birthday. We brought here to A&E but had fully recovered so not much was done. 1 in 4 children under 9 can have a seizure so there is never really a big deal made about the first one. Up until April’09 she had a few more.

In April we had an appointment with a paediatric neurologist. Before seeing the neurologist a neurology nurse took all our details and Nevaeh’s medical history. We had asked her about a possible link between coeliac disease and Epilepsy but she said she never heard anything like that. The reason we asked is because on my father’s family there is six relatives diagnosed with coeliac disease and it was my uncle who had said to us about a link between the two.

After speaking with the Neurologist Nevaeh was started on Tegratol (A standard Antiepileptic drug). A side effect she experienced to this drug was Myoclonic Seizures or 'Head nods', they last for only a fraction of a second but she was having up to sixty per day.

In June, after 48 hours in telemetry with continuous EEG and Video recording. Nevaeh’s Neurologist took her off Tegratol and started her on Epilum. It was at this time also when Nevaeh was diagnosed with a seizure disorder known as 'Doose Syndrome' or 'Myoclonic astatic Epilepsy' (Worth a Google some very interesting but sad reading). For the next eight weeks my daughter stopped having myoclonic seizures but started having Tonic Clonics again. Maybe 2 or 3 a week. The funny thing about these were that she had the all-around in same time, between 1-2am and all while sleeping The doctors took no notice of this information but ended up being quite relevant to Nevaeh’s normal daily routine.

So we’re now into August, seizures are still not under control and she has been started Clobazam (a type of Valium) with the Epilum. This was when the fun really started. The 2nd of September 2009 without a doubt the toughest 36 hours in my life.  Nevaeh had only started primary school but that morning eating breakfast she had an absence seizure. It’s a type of seizure where the lights are on but nobody is home. The video clip will show an absence seizure that I only caught by chance. The trouble with her having an absence seizure was that she would vomit afterwards. She had a couple before school and was vomiting a bit so we kept her out. As the morning progressed she had more and more seizures. By the afternoon we got in touch with the neurology department and were told to bring her into the hospital.

In the children’s hospital she was given some IV drugs but they couldn’t control the seizures. They were hitting high doses, to the point that Nevaeh was now just whacked out of it, not waking up but still have seizures every 20-30mins. After the seizure she was down to dry reaching now but never actually coming around.

Even though these seizures continued she was put in an isolation room and then POOF, 8pm all the doctors and nurses disappear. Just me and my little girl in a dark room with a single nurse on the ward outside. But the seizures haven’t stopped, she is coming around from time to time but can’t talk or walk and keeps wetting herself. 

9pm and the on-call doctor comes down to introduce herself. I explained the day’s events and also that she’s still having seizures but the impression I got was that she didn’t know what to do and basically said not to disturb her unless something drastic happens. Well at this stage we were up to about 25-30 (What Seizure video) you’d think that was drastic enough for some attention but wait till you hear what happens next.

So as the night progressed, so did the seizures. They were following every 12-20 minutes apart. So as drastic as this was the on-call doctor was paged twice and over the phone said that if she’s coming out of the seizure she’s alright. Never mind she’s now having full blown tonic clonics every 10 minutes.

At this stage now it’s about 4 or 5am, we’re up to around 70 full Tonic Clonic seizures. I documented and recorded most but it got to the point she wasn't waking up, wasn’t responding to me and all I could do was lie beside her in a hospital bed, hold her and cry. This little girl was my world and now she’s being treated for Doose syndrome and we’re thinking that more than likely she’ll have developmental and learning issues. A year previous she was counting to 100, knew her alphabet forwards, backwards and inside out. We thought we had a little baby genius on our hands and now she's overweight, doped out of it on medication, sleeping 16-18 hours a day and can barely remember her own name.

With 15 years of competitive fighting I’ve been floored, knocked out and choked out but the outcome was never much more than a bit of damaged pride. To this day I still don’t think I’m over the 2nd of September as my eyes well up thinking back as I write this.

Any father to a little girl out there will relate. You’re superman to that princess, her knight, her prince charming. In her eyes the world is a safe and wonderful place just because you’re there holding her hand.  But as I lay in that hospital bed crying, holding, my little princess I just felt so helpless, useless. I couldn’t do a thing for her. The most empty and gut wrenching feeling I’ve ever felt to this day.

The next morning after a total of 94 seizures and the neurology team being paged 5 times between 8am and 11:30am. They eventually came down, saw the state she was in. Gave her a very high dose of IV Lorazapam and just like that the seizures stopped.

I have since hit the roof about this, lost the head with doctors and consultants but that morning I just didn’t have it in me. I was broken, mentally drained and physically exhausted.
So I rested up, got my shit together and………………….Until next week,
 
Love and Happiness,

John T.

Click here to view other video clips of seizures with description

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