Mum shares journey following teenage son’s stroke

At the age of 16, in January 2017, Harry was diagnosed with a carotid artery dissection (damage to the arteries in the neck), possibly due to an old rugby injury.

  When the family were first given the news, Harry’s mother, Roz, experienced grief and the determination to get the best rehab possible. “We were determined to be strong for him and as positive as we could be. We also wanted to get him into a child-focused environment,” Roz said. It has been an intensive journey. Despite the signs of slurred speech, tingling hands and a blinding headache, Harry’s first stroke was missed by the first hospital that treated him. However, once under specialists, Roz found the hospital team shared the same aims as herself. Harry moved from the adult HASU (Hyperacute Stroke Unit) ward at London’s King’s College Hospital to the intensive rehab paediatrics ward. “The rehab was exemplary,” said Roz. “Integrated, intensive and designed with him, his friends and us as partners.” Harry then did a three-week upper limb programme at the National Hospital for Neurology and Neurosurgery, Queen Square, on an adult setting. Roz described this as ‘great... and very motivating’. The motivating programmes have continued and Harry is now under community-based physio and occupational therapy and has started the ARNI programme (for stroke rehabilitation). “Progress has been great,” said Roz. “From a total left sided hemiplegia (paralysis of half of the body) that lasted weeks, Harry has learnt to walk and is slowly regaining some upper limb movement. His cognitive difficulties are getting better each day.” In terms of support, Harry had a neuro psychologist at Kings and now has a counsellor at school. Roz said: “Support for us was hard to get. The team at Kings supported us but I had to find the non-specialist counselling myself.” Another great source of support was the Evelina London’s Children’s stroke service. This provides advice, care and rehab, but Roz said she only found out about this service by searching the internet. Harry has improved through the use of visual supports, a phased timetable and a rehab home-based timetable. In terms of the future Roz said: “We have to be positive and not close doors. Harry has shown us that what looked like the ‘truly impossible’ can be ‘possible’.” Roz offers her advice for parents in a similar position: “Take each day as it comes; try not to look too far ahead and celebrate every achievement.” She added: “Keep your child's social networks going in any way that you can, and involve them all the way, as they will ultimately support your child.”
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