Nell’s story is written by her mum Amber and shows how hard parents work to achieve the best outcomes for their warrior children. Amber’s vision therapist Jordan kindly gave a talk for UKIST about cortical visual impairment which can be found here https://www.youtube.com/watch?v=ZUo4yfpOfSo&t=37s
“Babies do weird and wonderful things” was the response of the consultant, on what must have been
our 6th or 7th trip to Wishaw A&E, about a video we took showing some very abnormal leg twitching.
We had been back and forth to A&E on a number of occasions only to be sent away with a diagnosis
of “Silent reflux” each time, despite our concerns that it was not that. We were first time parents so
the whole ‘over worried parents’ thing was their first impression, even when we had video footage!
Nell’s dad is a strong character so as you can imagine we weren’t easily dismissed, but still it
happened.
It wasn’t until I found the UK Infantile Spasms Facebook group that we started getting accurate
advice. We contacted Glasgow Children’s Hospital’s epilepsy team directly and arranged to email
over some video footage, they then contacted us immediately to arrange an EEG for the next day.
Nell’s seizures seemed to be progressing quite quickly and she had her first Tonic Clonic seizure in
the waiting room, we were grateful to finally be listened to and be in the right place to begin the
process. Covid meant things were running a little bit differently in the
hospital to usual, the EEG confirmed that Nell was having seizures with hypsarrhythmia and she
immediately started treatment, she was only six months old.
I will skip forwards on the middle part as I’m guessing that the next stage is very similar for a lot of IS/
Epilepsy families with medication changes, side effects, heartbreaking milestone struggles, sleepless
nights, the list could go on and on and on.
We were plodding along doing our best and Nell was even beginning to make progress in some
areas, then November 2021 came and hit us like a steam train.
Nell was admitted to hospital with breathing issues, after a consultation with ENT it was decided that
she needed to have her tonsils and adenoids removed and that it should be a relatively easy recovery
period. How wrong was that!! Following the surgery Nell developed a severe movement disorder and
medication to treat it was not having any effect. She had to be intubated after losing control of her
airway, have an MRI and taken down to PICU for one to one care, we were told that Nell might not
make it through.
The neurologists were baffled as she has shown no signs of having a movement disorder previously
so they ceased her Vigabatrin medication immediately and hoped that it was the cause.
For the next 9 weeks Nell battled her heart out, her dad Luke sat with her all through the night and I
sat with her during the day, we spent Christmas on the ward and on the 29th December she was
discharged and we finally headed home.
Nell had regressed in a lot of areas following her hospital stay so we have spent a lot of time building
her back up with her therapies this year.
Her favourite person is her Visual Therapist Jordan, he is a rarity of a person who is so cheerful,
positive, kind and fights Nell’s corner which I think she really picks up on, he really gets the best out
of her visually. Jordan specialises in Cortical Visual Impairment, before he came in to our lives we
were a little lost. We knew Nell had CVI but never actually really understood it in any depth, nobody
had ever actually explained anything to us or how to strengthen her visual abilities, any information
that we had found was online. Jordan comes out to our house once a week to do some visual
training, the first person he says hello to is Nell which we absolutely love because she is often
overlooked, we then get ‘homework’ to do the rest of the week. We have a clothes rail with a black
sheet hanging over it to remove background clutter and we place familiar objects on the sheet, it has
really helped to progress the more complex areas of Nell’s vision such as tracking and shared
attention, and she seems to really enjoy it. Her favourite visual objects are Elmo, Piglet, Spot &
Clifford the big red dog. Jordan has taught us ways of helping Nell to process the world, little
changes make a huge difference for her. We now know her favourite colours, objects and her best
visual fields. She amazes Jordan every week. The Guide dogs have also been helpful and invited us
to their My Time to Play groups, initially Nell found it a little overwhelming and fell to sleep for the first
couple of sessions but then gradually began to take interest in the sensory sessions. If she becomes
overwhelmed then her ‘go to’ can be to fall to sleep, so we have been gradually exposing her to new
experiences and environments and have seen a big improvement.
We try to take Nell to quiet, calm places with less activity to concentrate on, she loves Glencoe which
we are lucky enough to have nearby and we have three dogs so we integrate it all in to our lifestyle
with day trips now and then. Equipment has been up there with some of our biggest challenges and
trying to find a suitable supportive buggy that can handle the terrain was difficult, her BUG would not
be very enjoyable for her off road, its a sensory nightmare outdoors and we sound a bit like an old
horse and cart hurtling down the road. The NHS do not provide sport type buggies and we wasted
money on unsuitable buggies on our quest to find one that suited what we all enjoy, the outdoors.
We also have a Speech and Language therapist and despite all of the challenges she has faced,
such as seizures, reflux and general bad days, Nell has managed to retain accepting a spoon,
moving the food around her mouth and swallowing which is amazing. She is on the Ketogenic diet so
scrunches her face up at the taste of everything, but we love that she expresses her feelings on it, or
perhaps it is just my cooking ;D
Nell isn’t a huge fan of Physiotherapy and makes sure that we are all aware of her frustration towards
it, we do not see her physiotherapist as much as we would like to really. Her gran had researched the
Anat Baniel Method – neuro-movement rehabilitation that gradually creates new pathways in the brain
– so we searched for a UK practitioner and booked Nell in for a course. She was a bit frustrated
during her first session, she worked hard and was really tired, she probably worked harder than usual
as we tend to wrap her up in cotton wool at home. It is now something that we have integrated in to
her daily physio and ABM is an ongoing therapy so we have booked on to the next course too. In time
we will decide whether we think it is effective or not, but we will try anything.
We recently began attending an Early Intervention Programme at a specialist centre which has been
a real enjoyment for us all. Previously we had avoided most group sessions as it would have been far
too much for us let alone Nell but at the specialist centre everything was perfectly tailored to the exact
environment that Nell could thrive in and we enjoyed music therapy, sensory play and finally
managed to go swimming after almost 3 years of trying. Being in the pool as a family was brilliant and
Nell was so so relaxed. We visited nursery recently and will be applying for Nell to attend for a couple
of hours a week which we have found a really difficult step to take, we actually don’t want to be apart
from her but feel that it will benefit her hugely, so we have to give her that chance and give it a try.
We are very lucky that we have an amazing support network in our family and friends and they all just
absolutely adore Nell, she has her own little fan club.
We also have a pretty good specialist network which I understand is quite rare, from our health visitor
who is incredible to our epilepsy nurses, dietician and neurologist who will sometimes even return our
calls at 8pm. We have quite a frank relationship with our neurologist, which can often cut really deep,
but on the other hand we know exactly where we stand and Nell’s dad Luke is very honest with him
about what attention we expect for Nell.
If I was to write this before now it would have been much different, a little bitter even, but although we
will never get over the road that we have all been put on, we have grown with it, adapted.
We have been told things that we will never be able to forget – which may even need counselling in
the future, have watched our little girl struggle every day, get crippling anxiety the week of an
important appointment with a specialist, had days where we have had to look away a little sad when a
child the same age as Nell is running without a care in the world, felt broken hearted over needing a
piece of equipment, tried to push some things to the back of our minds often, trawled the internet for
hours searching for ‘therapies’ and ‘treatments’ and we will never give up trying, I don’t know if
parents ever do.
Sometimes I ask myself; are we very unlucky in that we find ourselves on this journey, or are we very
lucky because we have the most amazing little girl in our lives.
Nell recently turned 3 years old, her seizures are still uncontrolled, we continue to battle for seizure
freedom and we plan to go down the private route of whole extract CBD as soon as access becomes
available again, another battle the the NHS would not budge on.
Looking back to the start we were all majorly let down, and I just hope that awareness will make it
easier for families to be heard in the future.
Nell is our warrior, she is an incredible little girl, she tries every single day, she is aware, smart, full of
expression, beautiful with a tonne of long, dark hair and big beautiful eyes, she is THE BEST
company, she is unique, feisty, strong and any time we talk about her to people we have big smiles
on our faces. Despite all of the challenges she faces, the daily seizures and side effects she never
ever complains.
Her dad calls her his little trailblazer and she is my best friend, she 100% makes us better people.
We have a phrase in our household ‘Slow is smooth, smooth is fast’ and we have learnt that any
progress in the right direction, no matter how small, is a huge deal worth celebrating.
