This is an update for families who may be in a similar position to us.
What happens when the treatment for Infantile Spasms doesn’t work? Well, everybody’s story is different, but here is ours;
I remember searching online for other families in the same position as us, googling anything and everything, searching for answers because the unknown was driving us all up the wall.
We did round after round of frontline treatments; we even did a long-term course of steroids just for a seizure reset when things became unbearable for Layla.
Just a couple of weeks ago, we were organising some photos and realised that Layla spent most of her life, for the first couple of years at least, not looking like herself at all.
We wondered how other families were navigating refractory epilepsy because that was us. Nothing was working. As for the seizures, 14+ medications later, the odds were not in our favour.
Layla’s story was shared on UKIST around the time of her first birthday, https://ukinfantilespasmstrust.org/october-warrior-a-grandparents-perspective/
Fast forward two and a half years, our sweet, smiley and happy girl is living her best life.
Did we get control? Absolutely not. Does she still have spasms? Yes, she does every single day.
Does she still have seizures? Yes, she does. We give rescue medication twice a month as a minimum.
Layla has been through four surgical evaluations, three in New Zealand and one at Great Ormond Street Hospital. Is she an eligible candidate for brain surgery? No.
On 14th December 2022 Layla had an operation to insert a VNS – vagus nerve stimulator. It is still early days, but we are hopeful it will have a positive impact.
Milestones? I don’t want to say we gave up on them a long time ago, because we still do physical therapy, occupational therapy, speech therapy, hydrotherapy and all the exercises and activities we have been asked to do at home. We are not therapists and some days we balance the level of therapy and family life and decide to have a day of just being together.
When we are asked about goals, these are not Layla’s goals. She is going at her own pace, she has a fiery little personality and her expressions and body language speak a thousand words.
She is getting stronger every year; she is making incredible progress and we are in awe of her and everything she does.
Our house is full to the brim with equipment. In fact, we had to leave our last rental and find a more accessible property with room for everything! We had to upgrade the car to fit in her wheelchair and I guess that is part of life raising a child with disabilities.
Layla laughs all the time she finds lots of things funny including our very large and loud cat. She gives us more love than we could ever ask for and most importantly, she is happy and that is all we ever wanted.
We have found a cocktail of medication that seems to agree with her, and we have stuck with it.
Although Layla hasn’t had a seizure free day since she was a new-born, we have the most stability in our lives now. Hardly any hospital stays and a mostly predictable seizure pattern.
If we could go back in time to the early days and see the life we live now, it would have been comforting to know that it is different than we could have ever imagined, but everything is ok.
We still don’t have all the answers as to why this happened, though we do know Layla has genetic epilepsy and honestly, we are at peace with that now. Whatever will be, will be!
Written by Sammie, Layla’s mummy.
