CASE STUDY
GEMMA GALLACHER
Learning Disability Dietitian
SHEFN GROUP
OCTOBER 2004
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Miss R
Age – 33
Carers: Parents and sister lives next door
Day Centre : Attends daily 9-3.30pm
Does not go into respite care
Diagnosis
Cerebral Palsy ->Learning Disability
Epilepsy (family history)
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
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.
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
Miss M
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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
Normal, 3 meals per day with snacks
Adequate fluid intake
Never over ate
No problems with appetite
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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
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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
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Height = 1.54m
 BMI = 15
Turning Point
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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
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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
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Changed to bolus feeding
Breakfast
300mls Ensure Plus feed =
100mls water
Occ. Weetabix with FCM
Lunch at Day
Centre
Wotsits, digestive with butter
Drink of juice
Dinner
400mls Ensure Plus with
100mls of water CoT with 2
tsp of sugar
Evening
300 mls of Ensure Plus + 100
mls of water
Bright Future
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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
Date
Weight
Oct 03
5 stones 7 pounds
Nov 03
6 stones 2 pounds
Jan 04
6 stones 6 pounds
Feb 04
7 stones 1 pound
April 04
7 stones 2 pounds
May 04
7 stones 2 pounds
Aug 04
7 stones
Sep 04
7 stones 2 pounds
Team Approach – Community Learning Disability
Team
Occupational
Therapist
Dietitian
Speech and
Language
Therapy
FAMILY
Complex
Physical
health Needs
Nurse
Physiotherapist
Health Care
Co-ordinator
Psychiatrist
DAY
CENTRE
Psychologist