Meet Lewis - Lewis is 16, he attends the post 16 unit of a special needs school

Lewis lives with his mum, step-dad and two of his brothers, all of whom he loves very much.  He has a special relationship with his oldest brother, who is often away with the Army, but likes to support Lewis when he is home.

What is important to Lewis:

  • Lewis adores his 3 brothers: one is in the army, the others are  18 and 14.  When the brother who is in the army is home, he helps with Lewis’s care and support. Lewis becomes very calm and peaceful as a result. Lewis is also very fond of his dog, called JT, and a cat, called Robbie.
  • Loves food, especially Quavers crisps.
  • Enjoys going swimming and being active.  Sometimes, due to his health needs, Lewis needs to use a wheelchair, but he much prefers to be out of his chair.
  • Likes going on car drives.
  • Watching Thomas The Tank Engine.
  • Lewis likes things that use all his senses, for example, the spinning wheels of a toy car and tapping on a radiator.
  • Lewis likes to be outside and if he was able to tell us, he would like to be with animals; he likes the PAT dogs at school and going to the  Zoo.  Mum thinks he would also like to give horse-riding a try.
  • Lewis loves rollercoasters and fun fairs; he had an amazing time at a fun fair in Holland.
  • Sensory toys he can chew.

Daily living:

  • Lewis’s family help him to get washed and dressed.
  • He has his own bedroom, with a hoist for when he is poorly, and a shower room.  He has a Spider Man transfer on the wall and the colour theme for the room is blue, which he likes.  He has a TV on the wall and his bedroom window looks out onto the back garden, where he can see his water feature.
  • Lewis has an epilepsy alarm on his bed for when he has seizures at night, which happen often; this has really helped both him and mum.  H also has a suction machine.
  • Lewis has a motability van which the family and carers use to take him out.
  • Lewis will take you or direct you to what he wants, or go and get an item and give it to you.  He has tried PECs in the past but this was not successful.
  • He doesn’t like a tidy bedroom!


  • Lewis is at school and attends a post 16 unit which he enjoys, but he has missed lots of days because of his poor health.
  • When Lewis goes swimming, he goes with his family and carers, who help him in and out of the pool.  He needs 2 people to support him because of his health needs.
  • Lewis really enjoys respite at a local children’s centre.  He has 2 nights per week, which he calls a “sleep-over”.  This week he is also going to start having tea time visits as it is hard to find appropriate clubs he can join. A special friend from Respite, Charlotte, helps to support Lewis at home for 24.5 hours per week; some of these will now be spent in Respite.
  • Lewis is very friendly and loving towards others.
  • He likes music at school and will join in with a drum beat.
  • His brothers help him to wear trendy clothes.
  • He has just had his first proper haircut, from mum who is a hairdresser.  Before that he had a clippered haircut, because he doesn’t like sitting still.
  • Lewis has hydrotherapy at school, which he enjoys.
  • The family have some close family friends who provide support.

Lewis’s concerns

  • Lewis would like to have some independence from mum and step-Dad.
  • He has to wear a helmet, because of his numerous drop seizures, which makes him look different from other teenagers.
  • Lewis is very active at home and school, but sometimes, because of his medication for his epilepsy, he gets breathless after a short distance and has to use his wheelchair; he would rather not be in the wheelchair.
  • Lewis likes extreme rides, going fast and loud engines. Some people can see these experiences as risky, this is a concern for the future.

Other concerns:

  • Lewis’s family spend a lot of time awake at night with him, as he has lots of different seizures at night.
  • Lewis is very strong and he will use this asset to his advantage if he wants you to move out of the way.
  • If he is out, Lewis likes to keep moving.  If he gets upset, he can hit his own head.
  • Mum would like to work, but because of Lewis’s unpredictable health and the support she has to give, even when he is at school, this is not possible.
  • Mum would like the option to have a second carer to take Lewis swimming sometimes; this would give her a break.
  • Wheelchair is now too small and broken and Lewis has been waiting for a significant time for this to be replaced.
  • Frequent visits to hospital when Lewis’s seizures cannot be controlled.
  • Lewis has a number of different types of seizures, including ones where he laughs hysterically but is clearly stressed.  These are called Gelastic seizures.
  • Lewis’ bedroom has been converted into a wet room with a shower in the corner. The bedroom is cold and damp, this is causing major concerns.

Medication and support:

  • Lewis receives support from a speech and language therapist because of chewing and swallowing difficulties.
  • At school he has been assessed by a physiotherapist.
  • Regular Medication –
    • Sodium Valproate
    • Vagal nerve stimulator
    • Clobazam liquid
    • Phenobarbitone
    • Melatonin
    • Thick and Easy
  • Medication used when necessary -
    • Chloral hydrate
    • Buccolam
    • Paraldehyde
    • Movicol
    • Cetrizine21

Regular health tests:

  • Lewis has 3 monthly health checks with a paediatrician and an epilepsy nurse
  • Lewis has 6 monthly health checks with the neurologist
  • Lewis has 6 monthly health checks for his Vagal Nerve Stimulator (VNS)
  • Lewis has 6 monthly health checks with the community paediatrician
  • Awaiting appointment for adult podiatry