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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 9-3.30pm Does not go into respite care Diagnosis Cerebral Palsy ->Learning Disability Epilepsy (family history)

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Case study

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 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



Epilepsy in learning disability
Epilepsy In Learning Disability others with CP do not


Miss m
Miss M others with CP do not

  • 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


  • Age 12+ others with CP do not

    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
Major Problems others with CP do not

  • 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
Turning Point others with CP do not

  • 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
Progress others with CP do not

  • 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
New Nutrition plan others with CP do not

  • Changed to bolus feeding


Bright future
Bright Future others with CP do not

  • 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
Weight others with CP do not


Team approach community learning disability team
Team Approach – Community Learning Disability Team others with CP do not

Occupational Therapist

Speech and Language Therapy

Dietitian

FAMILY

Complex Physical health Needs Nurse

Physiotherapist

MISS M

Health Care

Co-ordinator

Psychologist

Psychiatrist

DAY CENTRE


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