CASE STUDY GEMMA GALLACHER Learning Disability Dietitian SHEFN GROUP OCTOBER 2004

Miss R Age – 33 Carers: Parents and sister lives next door Day Centre : Attends daily pm Does not go into respite care Diagnosis 1. Cerebral Palsy ->Learning Disability 2. Epilepsy (family history) 3. Scoliosis (congenital curvature) in her spine walks with aid

What is Cerebral Palsy? Condition caused by damage to the brain Can range from mild to severe, occurs during or shortly after birth Not a disease. ‘Cerebral’ refers to the brain and ‘Palsy’ to the disorder of movement or posture Types Spastic – over abundance of muscle tone Athetoid – uncontrolled movements Ataxic – Lack of co-ordination / balance Mixed – 2 or more of the above types Most common Spastic – occurs in about 50% of CP cases. Common for most people with spastic Cerebral Palsy to have a learning disability Characteristics Inability to fully control motor function, Spasms, tonal problems, seizures, disturbance in mobility, impairment of speech, sight,hearing or speech,mental retardation

Causes At Birth: Illness during pregnancy Premature delivery, Lack of oxygen supplied to the baby Early in Life: Accident, lead poisoning, viral infection, child abuse Incidence~ 2 in every 1,000 births will have CP While some people with CP have a learning disability many others with CP do not Many people with CP can lead a normal life

Epilepsy In Learning Disability Frequency 30% of people with a learning disability have epilepsy People with a severe LD – 50% have epilepsy 1 in every 200 adults have epilepsy in the UK What’s the Link? Both epilepsy and learning disabilities are outward symptoms of dysfunction or damage Seizures When the brain activity is suddenly disturbed Can be difficult to identify – CAN GO UNRECOGNISED and UNTREATED Involves strange behaviour, jerky movements Periods of confusion, repetitive behaviour Treatment Drug Therapy – variety of drugs available however seizure control may be more difficult to achieve due to the level of brain damage. The seizures may also be more frequent/severe.

Miss M First 18 months – normal development At 18 months Miss M started having seizures: held her breath for minutes 18 months – 3years old attended a day centre for toddlers, commenced on Phenobarbitone for her epilepsy, seizures improved At the age of 3 Miss M was diagnosed with CP at Yorkhill Hospital Diet – until the age of 12years 1. Normal, 3 meals per day with snacks 2. Adequate fluid intake 3. Never over ate 4. No problems with appetite

Age 12+ Diet History B/F – Weetabix with full cream milk CoT with milk and sugar Lunch – Beans/Ravioli with bread Drinks of full cream milk or juice Dinner – Mash potatoes with a sauce or gravy mince and potatoes Snacks – Packet of Wotsits and occ. Fortisip / Forticreme On a good day: ~1200 kcals 20-30g of protein NOTE: No dietetic input ? Weight Symptoms of anaemia – lethargy, pale gums No bloods taken – not tolerated

Major Problems Age 28+ Chest infections Refusing medication, seizure activity Refusing food, poor skin integrity Difficult to brush teeth Choking If Miss M had a chest infection appetite / weight loss for 2-3 weeks Parents were told – short life expectancy –Weight = 6 stone 38kgs Height = 1.54m BMI = 15

Turning Point SRD working with sister recommended PEG (no dietetic input, family aware of services, but did not contact us) Miss M only attending day centre 60 days out of the year Discussed this with GP – against the insertion of a gastrostomy Parents not keen felt ‘eating was the main pleasure in her life’ ? Survival chance ? Quality of life issues September 2003 – Major chest infection PEG inserted by gastroenterologist Weight = 5 stone 7 pounds 35 kgs BMI = 13 MAMC = 12 cm (approx)

Progress Nutritional requirements = 1750 kcals, 65 g of protein Commenced on 1 litre of Ensure Plus, providing : 1500 kcals and 60g of protein Using Flexiflo pump (family trained), tolerating feed at 100mls / hour, all medication given through gastrostomy in a liquid form (Tegratol) On discharge - family noticed a marked difference in miss M Appetite improving, hydration, seizure activity, Bowels regular When at home – pump feeding didn’t suit – pulling tube at night, pump alarm going off, Mum sleeping in with Miss M, disturbed sleeping pattern

New Nutrition plan Changed to bolus feeding Breakfast300mls Ensure Plus feed = 100mls water Occ. Weetabix with FCM Lunch at Day Centre Wotsits, digestive with butter Drink of juice Dinner400mls Ensure Plus with 100mls of water CoT with 2 tsp of sugar Evening300 mls of Ensure Plus mls of water

Bright Future Improved quality of life for Miss M and family Sits up at dinner table Eating can still be erratic, if Miss M has a good day her feed is reduced - FLEXIBLE More alert, mobile Attending the day centre and participates in activities eg. Outings, Sensory therapy, Music therapy, Beauty treatments Physically developing Happier BMI now – 17 MAMC 13.5 cm Weighed every 6 weeks, good conyact with family

Weight DateWeight Oct 035 stones 7 pounds Nov 036 stones 2 pounds Jan 046 stones 6 pounds Feb 047 stones 1 pound April 047 stones 2 pounds May 047 stones 2 pounds Aug 047 stones Sep 047 stones 2 pounds

Team Approach – Community Learning Disability Team Occupational Therapist Dietitian Physiotherapist Speech and Language Therapy Health Care Co-ordinator Psychiatrist Psychologist Complex Physical health Needs Nurse FAMILY DAY CENTRE