# Presentation: 376440

## Fetal Alcohol Spectrum Disorders: Recent Developments

- By:
- Larry Burd, Ph.D.
- Director
- North Dakota Fetal Alcohol Syndrome Center

## Screening and Diagnosis of FASD

- Very limited screening (even in high risk populations)
- Diagnostic services are uncommon
- Pediatricians ****
- Psychiatrists ***
- Neurologists ***
- Developmental and specialist clinics ****
- Treatment programs for Women ****
- Corrections Systems **

## Currently Diagnosed 

- FAS					?
- Partial FAS				?
- ARND					?
- ALL FASD				1-2%
**98 of 100 cases of FASD undiagnosed**

## Family History

- Familial
- Multigenerational
- Genetic Factors

## THE MOMS

| Age | 27.4 |
| --- | --- |
| Education | 10.6 |
| Unmarried | 63% |
| Smoker | 82% |
| Alcoholic | 10+ years |
| Heavy Drinker | > 10 day + |
| Treatment | > 3  (45%) |
| Minority | 73% |
| Poor | + |
| Poor Diet | + |
| Parity | 3 |
| Prenatal (1st) | 1 |
| Prenatal visits | <3 |
| Maternal Deaths | 2.8% |
|       |  |
|        |  |

**Number of prenatal complications**
**Number of prenatal visits**
**Monthly prenatal care starts**
**Birth weight**
**Number of malformations**

## THE DADS

| 
Age | 
30.8 |
| --- | --- |
| 
Education | 
10.9 |
| 
Unmarried | 
63% |
| 
Alcoholic | 
12 + years |
| 
Heavy Drinker | 
+ |
| 
Treatment | 
> 3 |
| 
Minority | 
60% |
| 
Poor | 
+ |

**Other terminations**
**Number of prenatal visits**
**Number of prenatal complications**

## THE CHILDREN

| Age Diagnosis | 7.1 years |
| --- | --- |
| Older Sibs | 2 |
| Younger | 2 |
| Birth Defects | 20% |
| Cerebral Palsy | 6% |
| Mental Retardation | 30% |
| ADHD | 60% |
| Out of Home | 85% |
| Head Injury | 25% |
| FASD Deaths
Sibling Mortality      | 2.4%
4.5% |

##           THE DADS

**          ****THE DADS**
**Age****	****	****30.8**
**Education****	****10.9**
**Unmarried****	****63%**
**Alcoholic           12+ years**
**Heavy Drinker****	****  +**
**Poor****	****	****  +**

**            ****THE MOMS**
**Age****	****	****27.4**
**Education****	****10.6**
**Unmarried****	****63%**
**Smoker****	****	****82%**
**Alcoholic           10+ years**
**Heavy Drinker****	****> 10 day**
**Treatment        >3 times (45%)**
**Poor****	****	****  +**
**Poor Diet****	****	****  +**
**Parity****	****	****  3**
**Prenatal (1****st****)****	****  1**
**Prenatal visits****	****< 3**
**Maternal deaths****	****2.8%**

**                  ****THE CHILDREN**
**Age diagnosis****	****7.1 years**
**Older sibs****	****	****2**
**Younger****	****	****2**
**Birth defects****	****	****20%**
**Cerebral Palsy****	****6%**
**Mental retardation****	****30%**
**ADHD****	****	****60%**
**Out of Home****	****	****85%**
**Head Injury****	****	****25%**
**FASD Deaths****	****	****2.4%**
**Sibling Mortality****	****4.5%**

## Increased Risk of Having a Second Child with Fetal Alcohol Syndrome

**Increased Risk of Having a Second Child with Fetal Alcohol Syndrome**

| 
Total number of live births after birth of FAS child | 
Number of children with FAS in subsequent births | 
Estimated incidence of FAS per 1,000 live births | 
Incidence of FAS in subsequent births per 1,000 live births | 

Risk increased by |
| --- | --- | --- | --- | --- |
| 
35 | 
27 | 
.97 | 
771 | 
795x |

*Source*: E.L> Abel, Fetal Alcohol Syndrome in Families,
*Neurotoxicity and Teratology* (1988), *10*, pp.1-2. Copyright 1988 by
- Elsevier Science, Adapted with permission of the publisher.

## Bottom Line 

- Recurrence is a Failure of Our Public Health Systems

## MATERNAL RISK SCORE                      SCORE

- ____Age Over 25 years	____Unmarried, Divorced, Widow, Living with Partner		Check any one,
- ____On AFDC, WIC, Social Security or Income < $16,000 Per Year	      Add 5____Did not Graduate From High School____Poor Diet 	____Smokes More Than 1⁄2 Pack per Day____Drinks less  than 2 days/week & less than			Check here,        2 drinks /drinking day				    Add 20	____Age First Drunk Less Than 15 years____In Treatment Over Three Times ____In Treatment in Last 12 Months				Check any one,____Previous Child With FASD,				       Add 35           or Developmental Disability____Previous Child Died
- ____Children Out of Home (Foster Care or Adopted)						Check any one,____Heavy Drinker (3 or more days per week or over 3 drinks		      Add 45         per drinking day)____Uses Inhalants, Sniffs or Illegal Drugs                      **Score    Risk Category     Recommendations                  ****	****	****	****	****    **0        	None         	Standard Prenatal Care5        	Low           	Standard Prenatal Care  20-40  	Moderate   	Standard Prenatal Care and Patient Education on FAS45-50  	High    	High Risk pregnancy, Alcohol-Drug Abuse Treatment55-85  	Very High	High Risk Pregnancy, Inpatient Treatment			                 Total Score

*Prenatal*
*Copyright 2000*

## Exposure

- Example of poor question:
**You didn’t drink did you?**

## Slide 14

## Dosiometry

## Data from chart reviewsof 2,600 charts:

-  			**+   ****	****    -   ****	****	****+      Weekends**
**	****	****	****?****	****    occ****	****Early****	****	****   2 day**
**Heavy****	****Past treatment****	****	****	****3-4 day**
**Cut down****	****	****2 DUIs****	****	****DK****	****    Yes**

**Chart Data**

## Screening during prenatal care

- Example of good question
**When was your last drink?**

## Slide 19

## Prenatal Assessment 

- www.online-clinic.com

## Each Exposure Should be Considered an Episode

- Temporal parameters of susceptibility
- Dose
- Duration

## Assessment of Exposure During Pregnancy

**On average how many days per week did you drink during pregnancy?                _____**(a)
**On an average drinking day during pregnancy how many drinks did you have?  _____**(b)
**How many days per week did you have 4 or more drinks?**		             _____(c)
- Exposure Parameters ***(Cumulative exposure during pregnancy)***
**Pregnancy Drinking Days =**                 **( a x 40 )     =****	**** ****	****	****           **_____(d)
- Estimate of number of drinking days during pregnancy.
**Percent of Days Exposed During Pregnancy    =   ( d ÷ 280 )   = ****	****	**
- Estimate of  days exposed during pregnancy.**	****	****	****           **_____** **
**Number of Drinks During Pregnancy    =**      ** ( a x b x 40 )    = ****	****	**
- Estimate of number of drinks during pregnancy.**	****	****	**           _____(e)
**Ounces of absolute alcohol    =      ( e ÷ 2 )   = ****	****	****	****	****           _______**
- Estimate of exposure to absolute alcohol during pregnancy.
**Binge days ****	****= ****	****(c x 40)****	****=****	****	****	****	****           _____(f) **
- Estimate of number of binge days during pregnancy.

## Profile of Exposure Episodes

- Fetal death
- Stillbirths

## Diagnosis

## Syndromal Stability

- FASD is not the same at all ages.

## Phenotype
Detectability

- Detectability

**Low**

**High**

- Age in Years
- Criteria are Age Dependent

**Birth**

## Percent of Children who Moved Up in 

**Percent of Children who Moved Up in **
**Height Percentile Category from Birth to Diagnosis**

**%**

- N=232

## Percent of Children who Moved Up in 

**Percent of Children who Moved Up in **
**Weight Percentile Category from Birth to Diagnosis**

**%**

- N=312

## Criteria are severity dependent

- Phenotype
- Detectability

**Low**

**High**

**Birth**

- Age in Years

- Low

-   High               Low
- Severity      Detectability

-             Low Severity                  Low Detectability

## Slide 30

## Slide 32

## Slide 33

## Slide 34

## In FASD the brain is damaged which results in impaired and variable brain function. 

## Behavior Disorders

- Its brain damage AND behavior

##  Impairments in brain function result in:

- Memory
- Attention
- Adaptive behavior
- Use of social rules
- Sleep
- Behavior regulation

## FASD is mostly mental health

- ADHD
- Learning disabilities
- Depression
- Sleep
- Substance abuse

## Syndromal Variation

**               **
**                  ****Highly Variable Phenotype**

**Number of Cases**** **

- Classic

- Severe

- ADHD

- Hearing
- Impairment

- Cognitive
- Deficits

- Learning
- Disabilities

- Mental
- Disorders

- Infectious
- Illness

- Mortality

- CL
- &
- P

- Pregnancy
- Losses

- Fertility

- Birth Defects

- Increased
- Severity

- Visual
- Impairment

- Phenotype Variation** **

## Dying from drinking

**Mortality is increased in**:
- Mothers
- People with FASD
- Siblings
- IN FASD death is a family affair.

## Mortality from Prenatal Alcohol Exposure

- Fetal
- Stillbirth
- Infant
- SIDS
- Childhood
- Adult

## Mortality

- 38% increase infant death >5 drinks wk (Kesmodel et al 1999)
- SIDS 6-8 fold increase periconceptual or first trimester drinking (Iyasu et al 2002)
- Stillbirth 196% increase with weekly drinking (Kesmodel et al 2002)
- Sibling mortality 530% (Burd et al 2004)

## Slide 43

## Slide 44

## Outcomes

- Exposure

- High

- Low

- ARND   FAS   Fetal   Stillbirth   Infant
-                    Death                Mortality

## Outcomes

- Exposure

- High

- Low

- Fetal   Stillbirth   Infant   FAS   ARND
- Death               Mortality

## How can we find FASD?

**Screening**

## Why Screen for FASD?

- Case finding
- Prevalence
- Increased efficiency of diagnostic services
- Where should we look?
-  **foster care, birth defects clinics, treatment programs for women**

## Screening For FAS

- 10-12 minutes
- 6% referral rate
- Four -16 years of age
- Four Hour Training

## Screening FASD: Birth – Four Years

- 10 minute Screen
- Detection 70-80 % diagnosed cases
- Four Hour Training

## Screening for FAS: Birth to Four2 var: CC= 84; Sen= 93; Spec= 635 var:  CC= 85; Sen= 97; Spec= 59

- ADHD
- Head Circumference
- Birth Marks
- Vision Problems
- Low Nasal Bridge

## Screening for FASD: Birth to Four CC= 79%; Sen= 81%; Spec= 76%

- ADHD
- Head Circumference
- Epicanthal Folds
- Vermillion Border
- Palmar Creases
- Protruding Auricles
- _Anteverted Nostrils _

## Screening for FAS: Children and Adolescents6 var: cc= 84; Sen= 93; Spec= 5110 var: cc= 81; Sen= 86; Spec= 65

- ADHD
- Head Circumference
- Hypoplastic Midface
- Birth Marks
- Palmer Creases
- Smooth Philtrum
- Cleft Lip/Palate
- Current Weight
- Low Nasal Bridge
- Vision Problems

## Screening for FASD: Children and Adolescents 7 var: cc= 74; sen= 79; Spec= 6810 var: cc= 75; Sen= 86; Spec= 61

- ADHD
- Head Circumference
- Hypoplastic Midface
- Birth Marks
- Palmer Creases
- Smooth Philtrum
- Epicanthal Folds
- Tremors
- Protruding Auricles
- Heart Problems

## Paying Our Own Way

## Money Spenton Peoplewith FAS

**Money Spent****on People****with FAS**

*“**We have no funding.*
*You are not eligible.”*

- Funding Services

**FAS****Prevention**

## Cost of Care for FASDPaying Upfront

- 	On the day before the child with FASD is born we need to deposit over $540,000 in the bank to cover the lifetime cost of care.

## Prevention

- The most important step
**Find the Mother **

## FASD – Familial and Generational

- X

- X

**FAS**	-	Red
**PFAS**	-	Yellow
**ARND**	-	Green

- SIDS

## Prevention of FAS

**10-18 cases of FAS born each year in ND****.**

| Treatment 50% Effective |  |  |  |  |  |
| --- | --- | --- | --- | --- | --- |
| Alcohol Use & 
Other Risk Factors | Risk of
FAS | Women 
Treated | Women
Quit * | Cases 
Prevented | Cost per Case Prevented |
| Daily Alcohol Use | 
0.01% | 
20,000 | 
10,000 | 
1 | 
$100,000,000 |
| Heavy drinkers, middle class, non-smokers | 
.29% | 
690 | 
344 | 
1 | 
3,450,000 |
| Heavy drinkers, low in-come, smokers, poor diet | 
4.3% | 
47 | 
23 | 
1 | 
235,000 |
| Women who have had a previous child with FAS | 
75% | 
3 | 
1 | 
1 | 
15,000 |

- * Quit after one year.

##  PREVENTION of FASD IN PREGNANCY 

- Eliminate exposure – Quit Drinking
- Reduce exposure – Cut Down
- Eliminate smoking
- Improve diet

## Figure 1.  The cumulative cost savings, over a 20 year period, of preventing one case of FAS each year 

- Figure 1**.  **The cumulative cost savings, over a 20 year period, of preventing one case of FAS each year

## The FASD Hall of Fame

- Prevent one case
- Reward of $2.4 million

## Treatment of FASDStart early-Avoid AbuseAvoid multiple foster homesTreat in communityAvoid problem peersUse legal systemLong term treatment - The 10 Year Plan 

## FASD: Common Recommendations

- Annual Evaluation
- Positive Behavior Management Program
- Respite Care
- IEP
- Monitor Peers
- Schedule
- Plan Ahead
- Evaluate All Siblings
- Find the Mom

## FASD: Diagnosis vs Management

- One shot approaches are inadequate
- FASD varies over the course of development
- Anticipatory guidance is crucial
- Systems and parents
- Treatment and Prevention

## FASD Management: Birth to Five 

- Diagnosis
- Maternal Treatment
- Sleep disorders
- Respite Care
- Delayed Development
- ADHD
- Speech and Language
- Sensory Impairments

## FASD Management: 5 to 12 years

- School entry
- IEP
- Behavior disorders
- Socialization
- Preventing changes in homes
- Social Services
- Medications
- Comorbidity and Chronicity

## FASD Management: 13 - 18 

- School – Transition plan
- Living life alone
- Work
- Sexuality
- Substance Abuse
- Corrections
- Psychiatric disorders
- Behavior Management

## FASD Management: Early Adult Life

- Building a Care System
- Work
- Living Arrangements
- Socialization
- Substance Abuse and Psychiatric Disorders
- Corrections
- Money
- Letting go

## Management: Adult Life

- Building a System of Care
- Work
- Living
- Corrections
- Substance Abuse
- Psychiatric Disorders
- Guardianship
- Religion

## One Year Later

- 39,000 New Cases FASD
- What have **YOU** done?