Paediatric Neurosciences - Our Work
Finn's SDR Journey
During the pregnancy at around 28 weeks, Finn’s mum had, threatened preterm labour, which was stopped with medication, the pregnancy then progressed normally and Finn was born at 38 weeks an uncomplicated water birth, Finn was born with normal apgars and breastfed like a dream.
At around 9 months, Finn was seen by his health visitor for his 9 month-1 year check, where is became apparent that he wasn’t meeting his physical mile stones, he had never pulled himself up, wasn’t cruising furniture and also had a dominant right hand. A referral was made to a children’s physiotherapist and Finn was seen a few weeks later, this coincided with the family relocating to Hampshire but thank to the initial physio’s making contact with local services in Hampshire, Finn was seen by a physio and consultant, where an official diagnosis of Cerebral Palsy (Bilateral Diplegia of the Lower limbs with some upper limb involvement) was made. This was a complete an utter shock to us as a family.
With endless hospital, physiotherapy, OT appointments, Finn has come on leaps and bounds since his diagnosis. He has gone from not walking, to using a walking frame, to now at the age of 5 completely walking independently and attending mainstream school. He wears orthotic splints and uses his wheelchair out and about, as gets tired easily and falls over a lot. He also suffers with regular night cramps, which are heart-breaking, we tried medication but unfortunately for Finn he suffered a lot from the side effects.
Last year we made the decision that we would consider SDR for Finn and we were referred to Bristol Children’s Hospital. At the beginning of this year (2019), we were given the exciting news that Finn fulfilled the NHS SDR criteria as he was GMFC level 2 and could have the surgery. Finn had his surgery on 09th August, we hope it will reduce his need for further orthopaedic surgery in the future, and will give him more independence and a better quality of life in the future, as well as reduce his pain. We know the 2 year rehabilitation is going to be hard, but Finn is one happy, determined little man and knows the hard work is going too totally be worth it.
The Start of Finn’s Journey
On Friday 09th August Finn had his SDR surgery in Bristol, although Finn’s surgery has been long in the planning and the surgery all went well, nothing could prepare us for how tough the last 72 hours have been as parents, an absolute rollercoaster of emotions, we have had to constantly remind ourselves why we have done this. Day 3 is hopefully our turning point but where the hard works now begins, after 72 hours of lying completely flat, Finn was able to sit up for the first time, each day is now little baby steps closer to a better future for Finn.
Day 5 following SDR, Finn’s first day stood up and our little superhero achieved this, as well as being able to kick a football. Another emotional but amazingly proud day for us as parents. Click on the below link to see Finn in action.
Day 10 Well done Finn, your a little superstar. Click on the below link to see how well Finn is doing.
Finn’s 2 month post op update
Out little super hero is doing so well, here’s a few pictures of him doing his physio at home.
He has an extremely busy weekend ahead as he is taking part in the Great South Run!! Go Finn.
The Great South Run
What an amazing achievement, we had 89 people running the Great South Run for Finn last weekend and managed to raise around £16000, which is fantastic. Finn took part in the junior/mini run and walked across the finish line!
He had amazing coverage from itv meridian news, made it onto channel 5’s GSR coverage and into today’s Portsmouth news!
Watch Finn in action what a true Superhero.
Prior to Finn having surgery, he could never propel or pedal himself on toys/bikes, so words can’t describe how I felt when Finn’s new tricycle arrived today and he managed to do this! Out of everything over the last few months, this has probably been one the most emotional moments for me, to see his face light up and him just loving his new experience and having fun is just incredible, it’s also going to be fantastic physio!
Please watch Finn’s first experience on his tricycle, he’s one happy little boy.
Paediatric Neurosciences - Our Work
Delivering work up for Epilepsy Surgery closer to home
The team has been working with the Children’s Epilepsy Surgery Service (CESS) based at Bristol Children’s Hospital, and the epilepsy teams at Southampton and Oxford Children’s Hospitals. The project aims to ensure that children with complex epilepsy from the Wessex and Thames Valley regions who are being considered for epilepsy surgery are able to receive as much of their pre-surgical care and diagnostics at their home tertiary centre as possible. This means less travel for the families and improved consistency of care from the epilepsy teams that they already have a relationship with.
A ‘hub and spoke’ model has been developed with the regional centres to ensure that access to paediatric epilepsy clinical care, neuro-psychological and psychiatric assessment, MRI, Video EEG and other diagnostic requirements can be provided as close to home for the patients as is appropriate.
There is a set tariff for pre-surgical evaluation (PSE) for epilepsy surgery and we have negotiated a division of the tariff between the CESS centre and the tertiary neurosciences centres to support the teams delivering the care.
From 1st April 2018 all PSE for children from the Wessex region will be delivered at Southampton Children’s Hospital. A similar arrangement for children from the Thames Valley region is being developed at Oxford Children’s Hospital.