Dr. Mary Mather Consultant Paediatrician (retired) Dear Mum and Dad - - PowerPoint PPT Presentation

• Dr. Mary Mather

Consultant Paediatrician (retired)

Dear Mum and Dad I am having a great time at the youth detention Centre . They cannot help me here because they know nothing about me. I HATE

• YOU. I am NEVER coming home. It is raining

and I have lost my shoes> YOU are NOT my real parents. I hope you rot in hell! Please write back soon. Your loving son

 Managing a child or adult

with chronic behaviour problems is a very challenging task

 Behaviour is a symptom

not a diagnosis

 Permanent untreatable

brain damage causing bizarre behaviour may be sustained before birth

 Time to challenge some assumptions: ▪ Behaviour problems usually secondary to trauma

and poor attachment

▪ Addressing parenting seen as crucial to modifying

behaviour although birth parents may be equally damaged and substitute parents excellent

▪ Child has a normal structural and functional brain ▪ Somewhere/someone has effective treatment ▪ A child who looks normal and is very verbal does

not need special services

 Parents always play down extent of the problem  Professionals do not know how to ask “ hard” to

raise the issue with middle class mothers”

 We fail to get a good alcohol history  By the time the child has problems, ▪ Lawyers say we need permission to access health

information about parents

▪ Adopters are told to “live with uncertainty” ▪ Other wrong diagnoses are made ADHD, autism etc

 Deeply entrenched cultural attitudes  The only way of having a good time is to get

completely intoxicated

 A “great night out” is one “no one can remember”  From Chaucer to Shakespeare to reality TV,

drunkenness is seen as funny by the British (unlike drug use or smoking)

 Essential for office parties, stag and hen nights,

weddings, christenings, funerals, Christmas, family meals, most weekends and even Thursdays!

 Consumption in UK increased 50% since 1970

 Sweet German

Rieslings (9.5%)

 Small glasses  Tea with family

meals

 No supermarkets

 Stronger drinks

▪ White wine 12-14% ▪ Red win 12-15% ▪ Beer 4-8.5%

 Bigger glasses

▪ 175-250ml

 Wine with meals  Supermarkets open

24/7

2 4 6 8 10 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 Litres of alcohol consumed per head of population

Alcohol Consumption in the UK

Synthetic estimate % adult population 5.37 to 8.36 4.71 to 5.37 4.33 to 4.71 3.94 to 4.33 0.00 to 3.94

Synthetic estimate % adult population 21.052 to 28.933 17.256 to 21.052 15.645 to 17.256 14.718 to 15.645 00.000 to 14.718

██ > 10 litres ██ 5 - 9.9 litres ██ 2 - 4.9 litres ██ 1 - 1.9 litres ██ < 1 litres

Percentage of all deaths attributable to alcohol

██ 8% to 20% ██ 6% to 8% ██ 4% to 6% ██ 1% to 4% ██ 0.35% to 1%

Emergency Admissions for alcohol related liver disease 30 and above 25 - 30 20 - 25 15 - 20 < 15

10 20 30 40 50 60 70 80 1950 1960 1970 1980 1990 2000 Age Standardised Mortality rate per 100,000 Other European Countries England & Wales Scotland

5 10 15 20 25 30 35 40 45 16-24 25-34 35-44 45-54 55-64 % Age Women drinking more than the recommended guideline on at least

• ne day in a week

1998 2003 2011

 5 countries with highest prevalence in the

world

▪ Ireland 60.4% ▪ Belarus 46.6% ▪ Denmark 45.8% ▪ UK 41.3% ▪ Russia 36.5%

 Study excluded indigenous populations, adolescents,

women with a low socio-economic status or an alcohol use disorder

 Worldwide estimates 119,000 affected children born

every year

Popova et al Lancet 2017

 Percentage women drinking in pregnancy ▪ 79% first trimester ▪ 63% second trimester ▪ 49% third trimester  53% drinking during first trimester were

drinking more than recommended guidelines (mean 15.1 units per week)

 Women drinking were more likely to be ▪ aged 35 or older ▪ to have a university degree ▪ have a professional or managerial background ▪ to be of white ethic origin ▪ less likely to live in a deprived area  Even women adhering to the guidelines were

at significant risk of preterm labour and having babies with lower birth weight

 Impact of alcohol strongest in first trimester

 Generally accepted worldwide that 1% of all

births are affected by alcohol (1 in 100)

 In the UK: this means 7000 affected babies

per year

 More than the combined total of infants born

with Downs Syndrome, cerebral palsy, Sudden Infant Death Syndrome (SIDS), cystic fibrosis, and spina bifida

 Most experts think UK figure will be much

higher 3-5%

 Peterborough community audit

40 months from 2010-2013

 In 2010: only 2 children with FAS on the child

health system

 Identified 72 Children with FAS/D ▪ Complex behaviors clinic ▪ Statutory medicals for LAC ▪ Adoption medicals

Dr Geraldine Gregory Journal Adoption and Fostering Oct 2015

 43 (60%) were looked after by LA  15 living with extended family  8 were adopted  6 pre-placement adoption medicals  3% of all referrals to community child health

services but 27% referrals for LAC

 34% of LAC having statutory medicals had

been exposed to drugs or alcohol or not neonatal withdrawal

Glass Volume Alcohol Content No of Units No of glasses needed to have a binge (6 units in a sitting) A 125ml 9% B 125ml 13% C 250ml 9% D 250ml 13% 1.1 1.6 2.25 3.25 5.5 3.8 2.7 1.8

A unit of 13.5% wine is not this… But this

 Very difficult to find

3.5% beer

 Most are 4%

▪ 1 pint = 2.3 units

 Tetley’s and John

Smiths 3.8%

 Bottled beers range

from 3.8% to 9.0%

 Low alcohol beer is 2%

▪ 1 pint = 1.1 units

 Cheap cider, contains

no apples, pocket money prices

▪ 7.5% ▪ 3 litres £2.99 ▪ 22 units/ 3 litre bottle

 Extra-strength beers

▪ 9% ▪ 4 cans about £4 ▪ 440ml can = 4.5 units ▪ 4 cans = 18 units

 By day 23, baby has

125,000 neurones

 At birth, over 100

billion

 250,000 per minute for

9 months

Cowan, 1979

 Neurones migrate to

appropriate parts of brain

 Differentiate into

specialised types

 Form appropriate

connections with others

 Myelination of axons to

ensure the rapid transfer

• f impulses

 Selective cell death

eliminates unwanted tracts

 80 billion neurons

connected by

 176,000

kilometres of myelinated axonal cables

 100,000 billion

synaptic connections

10 weeks

14 weeks 22 weeks 28 weeks 40 weeks 32 weeks

Numbers Symbol Habitual ways

• f responding

Emotional control Vision Peer social skills Language Hearing 0 1 2 3 4 5 6 7

Age Years Pre-School School Years High Low

 Sufficient nutrition to grow

▪ Protein ▪ Energy from fats and carbohydrates ▪ Micronutrients: vitamins A,B, C & D, calcium, folate,

iron, selenium, iodine and zinc

 Freedom from toxins

▪ Alcohol ▪ Drugs (legal and illegal) ▪ Cigarettes

 Brain most vulnerable between 24 and 42 weeks

because of rapid increase in complexity

 The fetus shares this environment for 9 months  Critical information usually absent or missing  Confidentiality and the GMC do not help

Age 33 Age 22 Age 29 Age 31

 45 mothers prescribed methadone in pregnancy

▪ 91% babies exposed to other substances ▪ 73% opiates ▪ 70% benzodiazepines ▪ 59%cannabinoids ▪ 14% cocaine ▪ 7% amphetamines

 47% exposed to excess alcohol (9x) greater than

number identified on maternal history

 23% socially matched controls excess alcohol  All mothers denied excess alcohol use

Nicotine Alcohol Cannabis Opiates Cocaine Meth- amphetamine Short term effects / birth outcomes Fetal Growth

Effect Strong Effect No Effect Effect Effect Effect

Abnormalities

No Agreement Strong Effect No Effect No Effect No Effect No Effect

Withdrawal

No Effect No Effect No Effect Strong Effect No Effect *

Behaviour

Effect Strong Effect Effect Effect Effect Effect

Long term effects Growth

No Agreement Strong Effect No Effect No Effect No Agreement *

Behaviour

Effect Strong Effect Effect Effect Effect *

Cognition

Effect Strong Effect Effect No Agreement Effect *

Language

Effect Effect No Effect * Effect *

Achievement

Effect Strong Effect Effect * No Agreement *

 Alcohol/drugs/poor diets & lifestyles in

pregnancy cause

 Permanent changes in both the structure &

function of the foetal brain

 Alcohol is the most important cause of

damage and the most often ignored

 These babies are damaged before birth  Often present years later with a combination

• f learning difficulties and bizarre behaviour

 Dose  Pattern: Binge v Chronic  Developmental stage of foetus  Susceptibility  Maternal characteristics: health, diet  Synergistic reaction with other drugs  Ethnicity

 First Trimester ▪ Dysmorphology: facial features, skeletal

deformities, optic nerve dysfunction, heart defects, kidney defects

 Second Trimester ▪ Increased rates of still birth and premature labour  Third Trimester ▪ Functional impact on development, learning

behaviour and emotion. This group largely undiagnosed

 A life-long

permanent disability

 Incurable  Totally preventable  Commonest cause

• f learning disability

in the world

• 1. A confirmed history of alcohol exposure
• 2. Poor growth before and after birth
• 3. Distinct facial features
• 4. Neurological deficits

▪ Microcephaly ▪ Life-long learning problems ▪ Poor attention and concentration ▪ Motor coordination problems ▪ Behavioural and emotional difficulties

“Sharon missed antenatal appointments because Mike was arrested from her home on robbery (armed?). Flat searched – nothing

• found. Mike to appear in identity parade. Car

was impounded by police with my diary of appointments inside. Neighbours report a number of violent incidents at the flat. No police confirmation of any DV”

Short palpebral fissure length 2 Smooth philtrum (Rank 4 or 5) 3 Thin upper lip (Rank 4 or 5) 1

1 2 3 4 5 1 2 3 4 5

 For every child with facial

features there 10 affected children with no facial features

 85% children damaged from

prenatal alcohol exposure have no physical birth defects

 These children have normal

faces and normal growth but the devastating cognitive and behavioural difficulties caused by alcohol exposure in the last 3 months of pregnancy

 Appearances subtle  No diagnostic facial features  Very verbal  Normal IQ  Brain unable to process

information

 They have executive

function deficits

 Currently in UK very difficult

to get a diagnosis postcode lottery

 An ability to organize and plan  An ability to focus and maintain attention  An ability to store and retrieve memories  An ability to inhibit inappropriate actions  An ability to prevent emotions from getting

• ut of control

 An ability to understand social situations and

social behaviour

 Essential for ▪ Academic success ▪ Organisational skills ▪ Social relationships

 With or without facial features  Not evident until early school age when the prenatal

alcohol exposure is forgotten or considered irrelevant

▪ Hyperactivity ▪ Impulsiveness ▪ Short memory spans ▪ Concentration difficulty ▪ Poor planning and

• rganizational skills

▪ Poor judgement ▪ Failure to consider

consequences of their actions

▪ Motor coordination

difficulties

▪ Speech and language

difficulties

▪ Perceptual disorders ▪ Specific learning

disabilities

Autistic Spectrum disorder Conduct disorder Post traumatic stress disorder Attention deficit hyperactivity Disorder Attachment disorder Learning Difficulties Borderline personality disorder Dyspraxia

 They are all symptoms of damage to the

prefrontal cortex

 They are not curable  We must recognise the true extent of their

deficits whilst acknowledging their potential and strengths

 They are friendly, likeable, chatty and can be

very caring individuals whose real deficits go unrecognised

20 years Expressive language 16 years Reading ability 11 years Living skills 8 years Money, Time & Maths concepts 7 years Social skills 6 years Language, Comprehension & Emotional maturity 18 years Physical age

10 20 30 40 50 60 70 80 90 100

Mental Health Problems Disrupted School Experience Trouble with the Law Confinement Innappropriate Sexual Behaviour Alcohol & Drug Problems

Ages 6-11 (n=162) Ages 12-20 (n=163) Ages 21-51 (n=90) Individuals with FAS/FAE have a range of secondary disabilities - disabilities that the individual is not born with, & which could be ameliorated with appropriate interventions (Streissguth, et al., 1996 )

 Accurate diagnosis before age 6  Stable and nurturing home for >72% of life  Stability between ages of 8-12 critical  Receiving appropriate early education  Being eligible for SN services  Never experiencing violence or abuse  Prognosis inversely related to number of

placement moves

Ann Streissguth

 Parents need to be less protective  They need to let the child go and are

preventing independence

 Often has the most disastrous consequences

resulting in injury, death or involvement in crime

 Parent (and child) owning the diagnosis  Knowledge and information +++ ▪ Support group ▪ Internet resources ▪ Apps and books for children  Get the information into schools ▪ Educate teachers, SENCO, EP  Build a local network of support which will

cradle the child

 Child is roughly half their chronological age  “Be their external brain”  Child will not understand the link between

consequences and behaviour

 Repeat, repeat, repeat  There are some skills a child may never learn  Supervise, supervise, supervise  Over 80% will never live independently

 Have a daily routine and stick to it!  Teach the same skill in different places  Expect inconsistent performance  Success comes only in small uneven steps  Help the child to understand emotions and

social situations

 Managing expectations is the only way to

stay sane

 Always use simple language  Cues in new situations  Help with transitions  Strategies for autism may be very useful  Medication may not help or may make the

child worse

 Strategies not solutions

 Strategies not Solutions

▪ Edmonton/Alberta FAS network

 NO-FAS UK

▪ e-mail: info@nofas-uk.org

 FASD Trust

▪ e-mail: info@fasdtrust.co.uk

 BMA: Fetal Alcohol Spectrum Disorders.

▪ (Jan 2008) BMA Science and Education Department

 Have a local training day

 Unlike illegal drugs, alcohol intake rarely documented

accurately

 Diagnosis is then made more difficult (if not

impossible)

 Access to maternal records is affected by medical

confidentiality and issues around consent

 Records may be lost when child moves  No withdrawal symptoms at birth incorrectly

assumed to mean no exposure to alcohol or drugs

 By the time the child has problems, other incorrect

diagnoses are made

 Inappropriate medication or talking therapies make

the situation worse

 The issue is played down  The mothers alcoholism remains untreated and

she is not offered effective contraception

 She has another child who is more damaged

than the first one

 The second (and third and fourth) child is then

placed with the same stretched over burdened carers

 Placements disrupt and families breakdown  Placement not the child usually blamed

 The child's early history in social care needs

preserving until the child is at least 7.

 Adopters should not spend years getting

information in “drips and drabs” and fighting two local authorities for services

 No-one should be told to “live with

uncertainty” where information is available

 Knowing about a worst case scenario will

actually strengthen a placement

 Our failure to look at prevalence which means

that no future services are being planned

 Children who have uncurbable brain damage

do not get respite care

 Kinship placements where aging carers will

struggle as child becomes more challenging

 The cost to society of multiple assessments

and incorrect diagnoses

Social Services 19 12 Social Worker 4 Planning meetings 3 Adoption support Hospital 24 2 Genetics 2 Neurology 4 Psychology 2 Cardiology 3 Audiology 2 Surgery 5 Ophthalmic 2 Orthopaedic 2 Blood tests Local Services 38 3 Community Paediatrician 6 Occupational Therapy 6 Speech Therapy 6 Physiotherapy 3 Optician 10 General Practitioner 4 CAMHS Education 38 25 Meetings with teacher 2 Planning meeting 2 Psychology 6 Behavioural support 3 Special Needs teacher

TOTAL = 119

 To all those

wonderful parents and foster carers who have taught me so much

 You are so much

better than any text book