November is epilepsy awareness month in America.
Ok I’m in the UK but I don’t want to miss an opportunity to spread the word about Epilepsy. Here’s what I thought I knew about Epilepsy before Imogen was born.
- It’s pretty rare
- People have seizures occasionally but once diagnosed it would be controlled by medication
- Seizures are brought on by flashing lights
- In a seizure you would fall to the floor and shake
That was it, a pretty short list and actually almost entirely inaccurate!
Here’s our epilepsy reality.
At 14 days old Imogen started doing this strange thing where she would go stiff and jerk, a bit like startling. It was odd and I showed Matt but we agreed babies do odd things and I think we already knew Imogen wasn’t going to be your normal baby. 4 days later we received her diagnosis of 3p25 deletion syndrome and during her cardiology examination I remember her having one of these strange jerks but no one mentioned it. After her diagnosis we went back to see our pediatrician and showed him a video of what she did. It didn’t look like a classic seizure so he took the video to show the neurologist. A few days later we got a call saying we needed to be admitted to hospital ASAP. Imogen needed to start anti-epileptic drugs and they might make her so sleepy she would need tube fed. She also would need an MRI and an EEG to rule out a catastrophic form of epilepsy called infantile spasms.
We were pretty resistant to starting her on the recommended drug phenobarbital. In truth we were terrified. It’s known to cause development delays, among other symptoms and I couldn’t believe in this day and age the best medicine we have to treat seizures is something that could potentially be so damaging. We knew Imogen would already have development delays, we didn’t want to make them worse. We eventually agreed to start on a very small amount and see how she did.
Luckily she handled drugs well, continued to feed well and her seizures decreased. Her MRI which was a horrific experience (try keeping a 3 week old completely still and happy inside a loud vibrating machine for half an hour) came back normal. Her EEG confirmed epilepsy as she was clever enough to have a seizure whilst hooked up to the wires but also ruled out infantile spasms, so having been admitted on the Saturday morning we were able to go home on the Monday evening.
For the next few months we kept increasing her phenobarbital doses as we tried to stay on top of her seizures but the best we ever got to was one every 6 days. We added carbamazepine around Christmas time but this actually made her seizures worse and they started to come in clusters. We were admitted into hospital on Christmas Eve after her first cluster but luckily didn’t have to stay in. I vividly remember New Year’s Eve as a terrible night, whilst it felt like the world was partying we woke at 2am to an hour long cluster of 15 seizures, all we could do was hold her and sing to her while she recovered from each seizure and cried uncontrollably. We were so close to calling an ambulance when she finally finished seizing, it was like living in a nightmare.
We’ve since weaned off both carbamazepine and phenobarbital and started on Levetiracetam. She’s doing better on that and at one point we went 6 weeks between seizures but at the moment we seem back to every 7 days. We now have to make decisions about the next treatment to try. Unfortunately our neurologist says having tried 3 drugs without success, we only have a 1 in 30 chance of a new drug significantly reducing her seizures, but a 1 in 3 chance of side effects. If we do try a drug it will be valporate, a drug that could cause mood changes, sleeplessness and hair loss among other side effects.
These are the choices we make; strong drugs with potentially horrible side effects or seizures that could cause damage to the brain. No one really knows their impact. It’s a decision no parent wants to make.
Another potential step is to try the ketogenic diet. It’s kind of like Atkins, high protein, high fat, low carbs. It’s a hard diet to follow as every gram Imogen eats or drinks would need to be precisely measured. But then if a diet can stop all her seizures it would be worth it. Her milk allergy makes this path more difficult also as the ketogenic formula is milk based. It could also make her reflux worse, something we are keen to avoid. So more decisions, more pros and cons, more tough choices we have to make on her behalf.
Epilepsy is unforgiving. Along this journey I’ve met parents of children who seize hundreds of times a day, who wear helmets to protect them from injury, whose progress has been reversed by a particularly bad seizure, who have gone through brain surgeries only to lose their sight but still suffer seizures. It’s heart breaking.
So here’s what I think people should know about epilepsy:
- Around 1 in 100 people will be diagnosed with epilepsy at some point in their life time
- There are lots of different types of seizure, 40 different types infact, stiffness, shaking, jerking, moments of vacant staring, blinking are all things that can happen during different seizures depending what type a person has. Some people will suffer from more then one type.
- Some people will only have very occasional seizures, others can have hundreds a day, it really varies by person.
- Epilepsy can be a condition on its own not linked to anything or like in Imogen it can be a secondary condition linked to a underlying disorder such as a chromosome disorder or brain injury.
- There are 26 different epilepsy drugs and it is often trial and error to see which will work. In 70% of peope one of these drugs or a combination of 2 or 3 of them together will control seizures, in 30% of people with epilepsy this isn’t the case and their seizures continue despite medication. Thats 30% guys! A 3 in 10 chance of never getting the epilepsy under control.
- Many current epilepsy drugs have harsh and common side effects.
- Epilepsy is an under researched area and is in dire need of new research and drugs to help those 30% and to provide better, less severe drugs for all epilepsy patients.
- Sudep (sudden unexpected death in epilepsy patients) kills 1 in 1000 people with epilepsy every year. It’s rare in children, but the risk is increased by having uncontrolled epilepsy and nocturnal seizures like Imogens.
So what does the future holds for Imogens epilepsy? Who knows! She may out grow it (I pray every day for this) it might stay the same, or it could get a lot worse, she might develop different seizure types and we almost certainly arn’t done trying different treatment options in the hopes of getting better control of her seizures. In the mean time, we hope and pray research into epilepsy will continue and new, better treatments will become available. We keep Imogen sleeping in our room so we wake to any breathing changes and spot seizures as they start and we keep on talking about epilepsy so people can better understand it.
Maybe one day purple for epilepsy will be as recognised as pink is for breast cancer.