I apologise in advance for how long this post is……
Over the past 6 months I have been educating myself on all things Epilepsy with a special interest in Paediatric Frontal Lobe Epilepsy and a sub specialisation in Refractory Epilepsy (Yawn!). I know Luke’s extended family and friends are worried about him, maybe don’t like to ask us too many questions and obviously I’m not expecting them to trawl though medical journals, Epilepsy Society websites, or those awful self diagnosing Doctor sites. So I thought maybe it would be useful to list the main things that I have learned and have surprised me over the past few months – which in reality was just way off my radar beforehand, but be warned this is my understanding and I am not claiming to be a Specialist so don’t hold it as gospel!
- There are lots of different types of seizures
I knew a boy in school who had epilepsy, and I do remember vaguely observing him having a few seizures. They were Grand Mal/Tonic Clonic seizures, and these are the ones where people will drop to the floor usually stiffen, shake and maybe froth at the mouth and be unconscious for a few (sometimes more) minutes. To me they are the scary ones, very distressing for the individual and of course for concerned family or other witnesses. They can be serious and will typically leave the sufferer very lethargic and it can take days for them to recover properly and they may have memory loss from around the time of the seizure. They are classified as Generalized and affect the whole brain. But here is the interesting thing – they are not the most common seizure type, in fact the type of seizure Luke has (Complex Partial) is one of the most common (at least in Children). It is Focal, which means it affects the same area of the brain all the time and in Luke’s case his affects the Frontal Lobe. Other seizures include Absence seizures, Myoclonic, Simple Partial, Febrile….
2. People don’t recognise a Seizure as a Seizure
Luke’s seizure activity is a little quirky and different, it took the EEG for the doctors to determine he definitely had epilepsy – and I missed them myself at first. At our most recent hospital stay Luke was being observed for seizure activity, the whole medical team on the ward knew he was in this particular room being video recorded because he had epilepsy, yet when I popped out for 5 minutes the nurse who was in the room with him didn’t know that he had a seizure. I walked back in and Luke told me “I had a seizure” and the nurse said no, no he was just messing pretending to have one. But in fact yep it was a seizure, the poor nurse was so embarrassed but I did see the funny side of it!
It has amazed me though that Luke has had seizures in shopping centres, forest parks, restaurants and shops and never once has anyone asked “is everything ok?” or “can I help?” – people stare and watch him as his body stiffens, falls on the floor if he was standing/lean back or forward if he was sitting. His face reddens and he makes a noise which is somewhere between a moaning/shouting/laughing and then as he is coming around he smiles and I know it’s over. I will be honest, I could not care less – I don’t worry too much what other people are thinking, maybe that he is an out of control child or he’s having a tantrum or messing around but initially this really upset his 8-year-old sister. “everyone’s staring mummy!” “those people were laughing at Luke” I would liken it to children with Autism, people are too quick to jump to conclusions and judge children and their parents, it’s certainly changed my perspective when I see other children “acting out”.
3. Epilepsy can strike at any age
Apparently anyone can have a seizure – if you are sleep deprived, severely dehydrated etc. it could happen to anyone, not all seizures are epilepsy and in fact it would likely only be investigated after a second seizure to see whether you had epilepsy or not. The most common stages for it to strike are in childhood and over 60 but teenagers, people in their 2o’s, 30’s can just develop it one day with no notice.
4. Epilepsy is more than just seizures
Depending on what part/s of the brain is affected by the abnormal electrical activity. For some children it severely affects their development (speech, learning etc.), for others attention and memory loss are huge problems. For Luke we are still learning about how Epilepsy is affecting him. He is tired a lot of the time (not surprising though with a lack of sleep due to nocturnal seizures), his teacher definitely noticed a deterioration in his attention. He has mood swings, and due to his epilepsy being in the Frontal Lobe we have certainly noticed a big difference in his behaviour. He can become over excited very easily, he can be irritable, bad-tempered and a lack of impulse control is a big one. Sometimes he can be very depressed and self-deprecating. He is happier at home, he says that when he is away from home it makes him feel angry. We have had a couple of nights away over the Summer and each time he has been stressed/anxious and has had an increase in seizures – so we are learning and adjusting!
5. The seizure medication is a b*stard
I hate them – very simple, they are the devil but a necessary evil. Each new medication comes with a list of side effects for us to watch out for, these can include dizziness/rash/suicidal ideation/kidney stones/nausea/insomnia etc. etc.
Luke has tried 6 different medications over the past (almost) 6 months, in various combinations. Some have worked a little but not enough to stop the seizures completely, some have been completely ineffective, one has been great to stop the seizures but Luke is allergic to it and so has had to discontinue it. One affected his mood so terribly he actually lifted a bread knife to his sister and jumped out of his bedroom window. He couldn’t escape the rage – he was shaking and hyperventilating, he was losing his mind – and I was losing mine, what was I doing to him making him take these drugs?! Luckily his Consultant is very responsive and it is a continuous balance between effective seizure control and quality of life/side effects. The drugs he takes are used by people with anxiety disorders, bi-polar etc. they slow down the activity in the brain, how is he supposed to function like any other 7 year old? He has good days and bad days, but he does remain as my loveable, funny little man – he is a superstar!
6. There is such a thing as Refractory Epilepsy
30% of people with epilepsy will not have good seizure control/Become seizure free with seizure medication. That’s 30 out of every 100 people with epilepsy, that’s a huge amount of individuals worldwide. Once you have failed 2 first line Anti Epilepsy Drugs (AED’s) you are classified as having Refractory Epilepsy – which means you are likely to be one of those 30 people and your odd’s of becoming seizure free from medication is pretty small. Luke has failed/allergic to 4 so far. In desperation I know one mother from Ireland who has travelled with her young son Tristan (who has a particularly devastating form of epilepsy called Dravet’s Syndrome) to Colorado because in CO they will treat children with a Medical Cannabis Oil which has the hallucinogenic properties of Cannabis removed. He has gone from having 20 seizures a day, taking 7 different AED’s to now being seizure free for the past few months. I’m not saying that this is the best option for every child, or that it would be particularly effective for Luke, but it’s amazing the length’s parents will go to in order help their child when traditional medicines fail them.
7. Not all children “grow out of it”
Depending on the type of epilepsy and whether it is a genetic cause, brain injury/stroke, or in most cases cause unknown – some children will “outgrow” their epilepsy. Apparently for children with Absence Seizures it’s as high as 80%. I have asked Luke’s Neurologist but he says that Luke would be less likely to outgrow his as it has been quite difficult to control – but you never know. Also we are still investigating the cause of Luke’s epilepsy, there is no history in either side of the family but we are waiting on genetic testing results to rule it out. His Neuro is also doing further investigations as to whether he can find a physical cause in his brain.
8. Epilepsy Surgery is a thing
For those, like Luke who do not respond well to First line medications Epilepsy surgery is sometimes an option, where if they can find a spot in the brain that is causing all/most of the seizure activity then they can either try to remove it/disconnect it from the surrounding brain tissue. It’s mind-boggling – but there you go. There is also something called a VNS which is a small pace maker like device that is wrapped around your Vagus nerve in your neck and sends electrical impulses, it sort of disrupts the electrical activity in the brain and can help to reduce seizure activity.
9. Epilepsy is classified in Ireland as a disability
To me Luke has an illness, loosely you may say he has a hidden disability but for the moment I feel he should be treated like any other child with a medical condition like Diabetes or Asthma for example. People should be aware of the potential dangers and if he is not feeling well then should be shown compassion and understanding but my biggest fear for him as he grows is exclusion. I want normality for my son – but every day I do question, what is normal today?
10. Bad things don’t only happen to other people!
I read this somewhere before Luke was even diagnosed, but for some reason it stuck with me. Family is everything and when the chips are down you accept whatever card you have been thrown and you get on with it. I know there are families who deal with much much worse than us, I have met some of them in the wards of the Children’s hospital. I will fight tooth and nail for my son, and regardless of whether Luke will have to fight for the rest of his life with Epilepsy, he will know that his parent’s did everything they could and were beside him every step of the way!