Epilepsy: The Sneak

At 9 days old, he was moved to the intensive care part of the NICU to receive regular doctor check ups as well as a 1 to 1 nurse ratio.

He was moved there because he had an unsettled night, was not tolerating feeds and appeared jittery.

When I visited him that day it was obvious to me that something was terribly wrong.

His body was involuntarily, repeatedly tightening and releasing.

It looked to me to be a tonic clonic seizure. I remember his cry sounded pained and muffled. It was a frightening sound to hear.

He was no longer responsive to me like he normally was.

We were able to find out within the next day through ultrasounds and an MRI that Thomas had suffered a Grade 3 intraventricular hemorrhage with the bleed occurring in two areas of the brain.

It was termed severe.

The seizures were a result of the brain bleed and so the doctors could only manage the seizures while waiting for the bleed to stop, resolve, absorb, who knows?

I’m still unsure myself.

Thomas was hooked up to the BRAINZ monitor for a couple of weeks, heavily sedated from a cocktail of antibiotics and anti convulsants. Eventually the seizures became less and less.

The medications were gradually weaned away and this is when we started to see Thomas slowly become more alert each day.

We had become so used to seeing him lying there peacefully still so when he started to move a leg or arm or open his eyes it was a wonderful feeling.

I remember hearing him cry and thinking how beautiful it was.

Thomas had no more seizures for a month and was then weaned off the last anti convulsant.

Epilepsy is a sneaky, sometimes violent or quiet destroyer.

It had managed to force its way back into our lives, undetected at times. From Thomas having blank stares, to trembling lips, which then graduated to non-responsiveness and tremors in the arms and legs did we realise what was happening.

After 3 hospital stays over a period of a month, Thomas went back on an anti convulsant.

Within 2 days, the seizures had stopped. This led to a referral for an EEG and Pediatric Neurologist.

His EEG confirmed that he did indeed have epilepsy.

Was I surprised? No.

It was a relief to know what was causing this and that we had made the right decision to medicate and thus control the seizures.

Unfortunately Thomas has Cortical Blindness and Cerebral Palsy and so this means that his body does not have the appearance of fluid, controlled or coordinated movements.

He began making unusual, repetitive spasm like movements at around 5 months old.

He had a couple of episodes of these over a two day period and I had no idea what to do. He appeared content and happy during these episodes.

It was bizarre!

Following the episode, the second day, Thomas began to do that familiar body tightening and then releasing motion.

His cry was not like any cry I’d heard before. It was a deep, forced groan followed by another panicked cry.

One ambulance ride later, we found ourselves in resuscitation. Thomas, sedated. All too familiar.

That feeling of helplessness, worry, fear, and confusion all over again. What is happening to my little man?

I thought, give this poor boy a break! It’s not fair! Why me? Why him?

The following day we found out he had a fairly rare kind of seizure disorder called infantile spasms or West Syndrome.

It has a poor prognosis and the treatment includes intensive rounds of steroids resulting in poor side effects, for example; immuno-suppression and insomnia.

Again, epilepsy has it’s way of sneaking itself back into your lives and leaving you fearing the worst.

We were fortunate to have intervened early enough for treatment. Over a month later, he was spasm free.

It has now been 6 months, and he is still spasm free.

We watch him like a hawk because up until 5 or 6 years old, he can relapse. He remains on anti convulsants and at a much higher dose too.

He sees his Pediatric Neurologist regularly as well as repeat MRI’s and EEG’s. We need to carry a rescue dose of Midazolam in case he has a seizure.

Anyone who cares for him needs to know how to facilitate the medication. Having a plan is part of the epilepsy package.

It’s important to know what and how to react. But often times, although I am as prepared as I can be, I know that the fear and shock can have a paralyzing effect.

I am thankful that we have a form of medication that can control our boy’s epilepsy for now.

Being a parent of a child with epilepsy is at times a lonely, frightening, helpless place to be.

It is a place that no one wants to visit.

Since his infantile spasms successful treatment, we have seen an improvement in his development such as giggling.

What a joy to hear him share his happiness!

Epilepsy: The Jigsaw Destroyer

Doctors are unsure that this is Nicole’s full diagnosis and she continues to undergo genetic testing in the DDD Study. Nicole had a lot to live up to, her older sister Natasha met all of her milestones early and people often remarked on how advanced she was.

Although Nicole wasn’t quite so advanced, she too met all her milestones even if she did walk a little late. Our Health Visitor was always pleased with her progress.

Nicole was doing everything I expected her to be doing, toddling around, chatting away and generally getting into mischief.

Life was good and I had very little to worry about.

Then came that day, a day that will be imprinted in my memory forever.

At 18 months old, 17 days after her MMR jab Nicole had her first seizure.

I think of Nicole’s life like a jigsaw – one that we had lovingly built, watching this amazing picture appear of a beautiful little girl, with an infectious smile and endearing manner.

Then along came epilepsy and slowly it destroyed that jigsaw starting in the middle and methodically picking out the middle pieces and throwing them away without any regard for what it was leaving behind.

We watched helplessly as our little girl lost all those skills she’d worked so hard to learn.

18 months later, all that was left of the jigsaw was the outside pieces.

Nicole was a shell of the little girl we once knew.

She’d lost all of her speech and all of her self-help skills, she could no longer feed herself or play with toys as you’d expect her to.

Over the years we’d tried desperately to replace the pieces, and for a few days, weeks or even months, we’d see Nicole regain some of what she’d lost.

But then a cluster of seizures would hit and like a tornado, sweep through the jigsaw blowing away the pieces we’d searched so hard to find.

So since the age of 3 Nicole has made little to no progress in terms of her development.

We have tried all licensed and unlicensed drugs available, the Ketogenic Diet, VNS, alternative therapies, prayer and faith healing.

We’ve been to Great Ormond Street on numerous occasions but surgeries have been ruled out. In the early days, we used to count the seizures.

Once we got past 70 we thought what’s the point?

Today, we very rarely count them.

Nicole has clusters of seizures of every type – from startle seizures caused by noises you and I wouldn’t even notice to tonic-clonic seizures that often result in a hospital visit.

Nicole’s seizures, 13 years later, still aren’t controlled. But, our lives are controlled by the seizures.

We can’t leave Nicole alone, even for a second, and as she gets bigger it feels like our world is getting smaller.

A drop seizure in 3 year old is very different to a drop seizure in a 16 year old – there is less space to fall in, there are more obstacles in the way, she’s harder to catch – the risks are so much greater.

We always have to think of what is best for Nicole, she loves a party but a late night or a lot of noise will definitely lead to increased seizure activity.

Do we take her ice-skating knowing that she loves it but risk her body temperature dropping or picking up a bug which again will result in a cluster of seizures.

Over the years we have learnt so much.

We’ve learnt that clusters of seizures are part of Nicole’s life – messing with medications isn’t going to help so now we know when to say no to the doctors.

I recall a time when Nicole was in hospital and a nurse went to administer some calpol, Nicole rolled her eyes.

The nurse jokingly told her off, ‘don’t be rude young lady’, I had to explain that she was having a seizure.

There are still days when I don’t trust myself, Nicole’s seizures can be so discreet – is this the usual run of the mill day or is this masking something more sinister?

I’m on constant high-alert. Nicole takes up a lot of attention and my energy and I often forget the impact that her seizures have on the rest of the family.

It’s not only the distress and helplessness that her siblings feel watching her have seizures but it’s also all the other things they miss out on like cancelled activities and how it affects their day to day lives like late school runs, making their own lunches and so on – they’ve had to grow up very quickly.

Grandparents also miss out, they don’t have the same opportunity to do all the fun things they’d looked forward to like special days out and buying treats.

We spent many years feeling very isolated as a family, the information and social networks that are available today simply weren’t there when Nicole was young.

I’ve found the support of other families in similar situations very helpful, it’s also good to hear about the medications and treatments that other children are trying.

I remain hopeful that a new treatment for Nicole and the many other children like her is just around the corner. In the meantime we continue to battle with epilepsy – the jigsaw destroyer.

For more information about Lennox Gastaut Syndrome and the DDD Study. https://www.epilepsy.org.uk/info/syndromes/lennox-gastaut-syndrome http://www.ddduk.org/

Communication Breakdown: The Stress and Guilt of Having a Non-Verbal Child

There are times when Oscar is upset and obviously frustrated as there is something wrong or something he wants but I am unable to understand what it is.

He is frustrated with me and I am frustrated with myself, as I feel I should know what it is my child wants.

The same happens when he is poorly. The only tell tale signs that he is feeling unwell is that he will be a bit quiet and have a temperature.

The rest is then guess work.

Does he have stomach ache, earache, headache, something else?

I do not know and Oscar cannot tell me. This is the worst situation to be in.

We are working on Oscar’s communication skills and he has become very good at eye pointing.

If we ask Oscar where someone or something is, he will eye point to the person or object, if he knows.

Although, we do not know fully know what Oscar does and doesn’t understand, we think he understands a lot more than we give him credit for.

Over the summer we borrowed a ‘Big Mack’ button from SALT.

This is Oscar’s first step towards communication. 

You record a word or sentence into the ‘Big Mack’ and then encourage your child to try and hit the big button and the device will play the word or saying you have recorded into it.

I recorded ‘bubble’ into the device and when Oscar managed to hit the button and the device played the recording I blew some him bubbles, which he loves.

I did the same with some of his musical toys.

I recorded ‘telephone’ into the device and then when he hit the button I pressed the buttons on his toy telephone so the music would play.

Oscar seemed to really enjoy using the ‘Big Mack’ and uses one in school. We are hopefully going to get one for home, so Oscar is doing the same things at home as he is at school.

We have also downloaded an App called Grid Player.

This is an App where people can choose what they want to say and the tablet will say it.

The user can form proper sentences about how they feel, what they want to eat, what they want to do etc.

This App is a little bit advanced for Oscar yet, as we are only just starting on our journey into trying to communicate with each other better.

We have encouraged him to use it though as hopefully this App or similar ones will be of use to him in the future and this may possibly be his main form of communication.

Oscar really seems to enjoy using the tablet and the apps. He especially likes it when we get the App to say ‘I love chocolate’ because he does!

Keep me updated

Great Sensory Apps for Kids with Special Needs

Oscar has managed to get the iPad doing things that even I didn’t know how to do.

There are some Apps that he really seems to enjoy using which you may find useful for your child as well.

Color Dots

A circle floats around the screen which encourages eye tracking. You then have to touch the circle and it will ‘pop’.

Then two circles will appear. Again, they float round the screen you try and ‘pop’ the circles and then three will appear and so on until you end up with lots of floating circles for you to pop.

Oscar really enjoys this app and loves the noise the circles make when they ‘pop’.

Get Color Dots

Warning: Not that I have really played on this app, it’s Oscar’s after all, but it can be highly addictive!


Fluidity is a great sensory app. The best way to describe this app is it is basically like a water effect with bright colours in.

When you touch the screen the colours go brighter and move round the screen faster.

I am not sure why but this app does remind me a bit of a lava lamp.

Get Fluidity


This is another good sensory app where lots of tiny lines look like they are swimming around the screen.

When you touch the screen you can move them where you want to and make lots of patterns.

Get Fingerworks

Pocket Pond

This one is basically a pond with fish swimming round and you can add extra fish, lily pads, dragon flies.

If you touch the screen you will hear the sound of water and the fish swim away and hide before coming out again.

Oscar really enjoys playing this one as well and wonder if the sound of the water is calming for him, as he loves water.

Get Pocket Pond

I hope you have found this list useful. Of course there are so many other apps out there but I would say these are the ones that Oscar really seems to enjoy.

Please feel free to share any suggestions that you may have.


This is the Most Disgusting Thing You Will Read Today

We wouldn’t choose to lie ourselves on the floors of toilets.

Or, allow our toddler to eat a bit of food he drops there.

But, there seems to be very little drive to provide sanitary changing facilities for children and adults who, like May, will need assistance in changing their diapers for the rest of their lives.

Sometimes we are pleased to learn that there is a bigger disabled toilet available.

However, often the disabled toilet is even worse.

You’ve done it yourself—opened up the door to the disabled toilet and the force of the smell of urine and the pools of yellow piss and wet toilet paper drive you away.

What are we meant to do in this situation?

Should we lay May down in urine or leave her in her soiled diaper?

Firefly have joined forces with bloggers and campaigners across the globe to draw attention to this issue.

In a recent survey we did of almost 2,000 people, Firefly gathered evidence to prove what most of us parents of disabled children already know: facilities are substandard and unhygienic.

But, things are changing.

Because of our campaign and the pressure of parents, organisations are changing.

On the Space to Change part of our web site can see – and add to – our gallery of facilities that are upgrading their toilets to meet the needs of everyone.

You may also wish to check out the Changing Places web site if you live in the UK.

They campaign for accessible toilets and also provide a list of places that have appropriate facilities if you are travelling with someone who requires one.

These facilities should be available everywhere.

Everyone should have access to clean, accessible toilets.

You wouldn’t lie down in urine.

May shouldn’t have to experience that indignity either.

You can also find Stacie at the Mama Lewis Facebook page.