A Practical approach to Management of FASDs

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1 A Practical approach to Management of FASDs Royal College of Psychiatrists. Learning Disability Faculty Residential meeting, Cardiff, September 28 th & 29 th 2016 Dr Kieran D. O Malley, MB, BAO, BCh, DABPN. Child & Adolescent Psychiatrist, Slievemore Clinic, Dublin. Ireland President Elect Intellectual Disability Section RSM, London

2 Disclosure Slide I am not receiving funding from Industry or Drug Companies No member of my family has shares in industry or drug company related to this talk I received an Honarium for travel and accommodation for this talk I receive yearly royalties of book ADHD and FASD from Nova Science publishers NY. Dr Kieran D. O Malley 2016

3 General Concepts FASD, FAS (dysmorphic) ARND(non-dysmorphic) are the clinical conditions resulting from prenatal alcohol neurotoxic brain damage NOW called NDPAE, code DSM 5 The environment a child grows up in naturally impacts development, so separation to foster or adoptive homes or remaining in alcohol homes have differing effects O Malley 2012/ 2016

Disorder (non-dysmorphic) Now dysmorphic or non dysmorphic NDPAE, DSM 5

4 The FASD iceberg (UW) Developmental Psychiatric Disorders FAS (10-15%)(dysmorphic) ARND ( 85-90%) Alcohol Related Neurodevelopmental Disorder (non-dysmorphic) Now dysmorphic or non dysmorphic NDPAE, DSM 5 ARBD (Physical) Alcohol Related Birth Defects epigenetic physical problems F A S D

5 Development of the Embryo

6 Clinical Dimensional areas. ND PAE or ARND Multi Sensory and Motor Functional Deficits: sensory over or under reactivity (? Unilateral), Developmental Co-ordination Disorder, Dyspraxia/Ataxia, Regulatory Disorder, ADHD Disruptive Mood Dysregulation Disorder: Affective Instability or Intermittent Explosive Disorder, Mood Disorder, suicidal. Language Disorder: impairment in social cognition and social communication, alexithymia. Social Communication Disorder, ASD. Pseudo-psychosis Cognitive Disorder: mathematics disorder, dyslexia/dyscalculia, executive function deficits, working memory problems, 75% normal IQ, point split between verbal and performance, ADHD O Malley 2008/ 2014, Kodituwakku et al 2011, Rich & O Malley 2012

7 NDPAE or ARND (cont.) Facial Dysmorphology Disorder: flat philtrum, thin upper lip, flattened mid face, fleeting features. Growth features : Failure to thrive (organic cause), flat or decreasing ht/wt growth velocity., persistent low wt. malabsorption problems REMEMBER Alcohol Related Birth Defects, ARBD Neurological deficits, microcephaly, seizure disorder, truncal / gait ataxia, unilateral sensory loss or general dysregulation, eye, ear, skeletal system, heart, kidney, liver. Other; Gender identity issues. O Malley 2008, Guerri et al 2009, Gill et al 2015*,De Guio et al 2016*

8 PREVALENCE OF SECONDARY DISABILITIES across the life span, Streissguth et al 1996,UW

9 FASD/ NDPAE Developmental Trajectory Psychiatric Disorders appear from infancy/early childhood Regulatory Disorders become ADHD Regulatory Disorders become Mood Disorders Regulatory Disorders become a mixture of ADHD & ASD ADHD becomes Mood Instability ADHD becomes Intermittent Explosive Disorder/ Conduct Disorder ADHD increases impulsive suicidal risk ADHD or Mood Instability? predate Alcohol Dependence O Malley 2012,2016

10 FASD/ NDPAE Developmental Trajectory Cognitive delay can appear from infancy, Microcephaly not premature birth related. Specific learning disabilities. Delayed motor and/or sensory development from infancy to young, later childhood, and adolescence not premature birth related. Language delay may appear to be autistic in nature but is really a unique form of social communication disorder. Growth features appear in infancy not related to nurturing but epigenetic effect on glucose transporter/ nerve growth factor, delayed sucking reflex, GI absorption problems. Can persist to later childhood. Not attachment disorder related. O Malley 2012, 2016

11 FASD/ NDPAE Developmental Trajectory 1. FAS face does not mean more serious CNS damage 2. FAS face often only is diagnosed in infancy & early childhood and disappears in the adolescent and adult years 3. FAS face can appear in context of no CNS dysfunction and with no psychiatric problems* 4. FAS face does not indicate more serious developmental psychiatric problems *Clarren 2000, Pers. Com. O Malley 2012, 2016

12 General approach to Management Multimodal Management Design is the key. 1. Diagnosis, multi- professional 2. Physical Therapy/ Physiotherapy 3. Occupational Therapy 4. Speech and Language therapy 5. Special Education support, Statement 6. Individual therapy 7. Medication 8. Family / Dyadic Therapy 9. Advocacy, early/late 10. Group Therapy 11. Therapist/ Parent support O Malley 2008/14,Carpenter et al 2014

13 Systems of Care Approach is the only way to manage Regular Case management meetings from the First diagnostic assessment Building a Scaffolding system of professionals and family available Identifying the systems that need to be involved i.e. health, psychological, rehabilitation, education. legal, addiction Clarifying child s access to birth parents, & adult therapists monitoring birth parents suitability for access visits. *Preconception & Prenatal interventions will have the only lasting effects to break transgenerational cycle of FASD O Malley 2016, *Johnathan Sher 2016 ( Holyrood magazine Aug 9 th )

14 Management of Birth children This is a transgererational condition so birth parents often have developmental, psychiatric or addiction challenges related to their own undiagnosed FASD. or NDPAE Interview of birth mother/father, non judgemental/ issue of denial, Important to offer treatment coupled with diagnosis Birth records critical* Problems with continued access & continued addiction/ psychiatric disorder in parents. O Malley 2016

15 Management of Adoptive children Very complicated the later age the child is seen Many for-profit agencies who appear and disappear Issue of Pre-Adoption or Post Adoption support O Malley 2016 Essential to obtain hospital records, can be done even if Russian/Romanian Best work I do is take away parent blame and label of Attachment Disorder as it is an acquired brain injury. N.B. Post Traumatic Stress Disorder, PTSD

16 Management of Foster children Many children on Full Care Order or Looked After Children in Care have undiagnosed acquired brain injury, FASD/ NDPAE commonest cause No clear transition from adolescence to Adult LD or Psychiatric services, Capacity/Personal budget assessment critical Aftercare Programme Fostering social worker needs to have some knowledge of brain injury and it s effects on children, not all attachment disorder or exposure to DV. Case Management meetings essential as CAMHS usually will not see patients, not in their remit O Malley 2016

17 MEDICATION ADHD, see Consensus paper, BMA Psychiatry UK 2016 Under 5 yrs old :Omega Fatty Acids. Melatonin Sleep Disorder: Melatonin Social Anxiety Disorder: Clonidine, Guanfacine, Clobazam ASD/ADHD: Atomoxetine, Guanfacine *(stimulants) Mood Disorder: Fluoxetine, Carbamazepine, Valproic acid, GABA- ergic agents Intermittent Explosive Disorder : Carbamazepine, Valproic acxid, GABA-ergic agents, SSRIs Psychotic Disorder: Abilify, Riperidone O Malley 2016

18 Never Forget the specific nature of Alcohol Teratology The transgenerational effects of alcohol lie in the legacy of alcohol on foetal programming which can effect genetic transcription and so turn on the very genes that bring alcohol craving to the next generation of potential mothers and fathers O Malley 2012, 2014

19 Foetal Programming - Adapted from Barker s Hypothesis: Biological factors acting during prenatal life are associated not only with the development of common adult cardiovascular and metabolic disorders, but also with neurodevelopmental abnormalities and behavioural disorders Lester & Padbury 2009, Haycock Dutch Winter Study , FOAD. - Also the concept of Environmentally Induced Developmental Disorders Sage Handbook of Developmental Disorders, 2011

20 Transgenerational alcohol abuse 1.Animal research has shown prenatal alcohol exposure increases alcohol craving, Bond et al 1976, Reyes et al 1985, Dominguez et al Alcohol dependence is 3 times more common in young adults with prenatal alcohol exposure, Baer et al 1998, Ireland & UK have highest under age drinking in Europe,? model for international understanding 4. How much of the early onset of alcohol abuse is related to prenatal alcohol exposure? O Malley 2014,2016

21 Binge Drinking per 100 drinking occasions: Europe Female Male *Ireland *UK Sweden Finland Italy Germany 7 13 France 5 9 Strategic Task Force on Alcohol, Sept. 2004

22 Overall Binge Drinking per 100 drinking occasions: Europe *Ireland 59 *UK 40 Sweden 31 Finland 29 Germany 13 Italy 13 France 9 WHO Definition: 6 or more units of alcohol per drinking occasion ( unit = ½ pint beer, 1 small glass wine, 1 glass of spirits). Strategic Task Force on Alcohol, Sept WHO Study Published May 2014: Ireland 2 nd highest binge drinking 15 years and older 39%, UK rate 28%. Highest rate Austria 40.5%

23 Binge Drinking Weekly, At least 1 Binge episode: Ireland 1.All ages. Females 44% Males 61% The Health of Irish Students, Health Promotions Unit, Dept of Health and Children, All ages. Females 44.5% Males 45.5% University College Cork ( UCC), Health Centre Study, Clan Lifestyle Survey, ( ), Irish Medical Journal, 2010

24 GENERAL PRINCIPLES of Addictive Disorder & Psychiatric Disorder 1. Addictive disorder predates Psychiatric Disorder 2.Psychiatric disorder predates Addictive Disorder 3.Both Addictive Disorder and Psychiatric Disorder have a common vulnerability or aetiology i.e. physical/sexual abuse or prenatal alcohol exposure 4. The genetics/ genetic risk for delivering a child with FASD/ NDPAE may offer a clue. 5 Does prenatal alcohol epigenetic change bring the alcohol craving risk to the fore? O Malley 2003, Chudley 2009, Eberhart & Parnell 2016,.

25 My World Survey, Ireland, Headstrong/ UCD 2012 Alcohol and Psychiatric Disorder: Ireland Adolescents 12 to 19 years old ( WHO scale 0 to 40) 12% problem drinkers ( score 8+) 16% hazardous drinking ( score 16+) 27% alcohol dependent ( possible) ( score 20+) Protective Factor, significant other or what they called one good adult. If significant other/adult If No significant other/adult 6% Anxiety 15% Anxiety

26 Medication intervention for Addictive Disorder Selincro (Nalmefene 18mgs) * Naltrexone Acamprosate Morley et al 2006 Addiction, *Mann et al 2012, Maisel et al 2013, Addiction, Langford Hughes 2013, O Malley 2014

27 The Challenges of medical management Lessons from Ireland % increase in liver disease in period (1995 to 2007) - Rate of liver disease and deaths went from 28.3 per 100,000 adults to 89.2 per 100,000 adults ( ) - No. of pts. treated in hospital for liver disease increased 247% for 15 to 24 year olds( ) - Majority of pts. were male (70%) but higher proportion of females in the youngest age group* - Death rate among adults in hospital for liver disease went from 2.6 per 100,000 (1995) to 71 per 100, 000 (2007) 170% increase ( medical legacy of general alcohol abuse) - Unquantified premature liver/renal deaths of mother s who give birth to child with FASD/NDPAE ( 5 to 10%) Mongan D et al, Alcohol and Alcoholism, 2011, O Malley

The Mystery of Risk. Drugs, Alcohol, Pregnancy and the Vulnerable Child. Ira J. Chasnoff, MD

The Mystery of Risk. Drugs, Alcohol, Pregnancy and the Vulnerable Child. Ira J. Chasnoff, MD The Mystery of Risk Drugs, Alcohol, Pregnancy and the Vulnerable Child Ira J. Chasnoff, MD irachasnoff@gmail.com Attachment: Basic Concepts n Attachment is the interconnectedness between human beings.