FASD Early diagnosis is essential

P A R E N T T O P A R E N T

"Early diagnosis is essential."

"We must remember that it's not that these kids are a problem, but that they have a problem. We need to change our mindset, because the children are not going to change. FAS, FAE, and ARND are lifelong conditions. There is no cure."
Ronnie Jacobs, Bergen County, NJ Council on Alcohol and Drug Abuse.

FASD Diagnosis and Health Care

How is FASD Diagnosed?
Discussing the Diagnosis with Your Child
Health Concerns
Help me understand those crazy codes ....ICD and DSM-IV
Periodic Health Care
Record Keeping
Specialty Medical Care
Tips for Parents
What Should I Do to Prepare for the Diagnosis
What do the various Medications do?
Why Should I Have a Vineland Test Done?

Psychologist Ann Streissguth, a pioneer in the field of FAS, has conducted numerous studies mapping the long-term effects of FASD. Her research shows that the problems associated with FAS actually intensify as children move into adulthood. A majority of the adults in her studies had mental health problems, experienced trouble with the law, and were unable to live independently.

Professionals who work on a daily basis with the families of FASD victims see important changes beginning to take place. "Recent research has led to an awareness of the importance of providing early intervention to children diagnosed with FAS," says Wilton.

"Development and stimulation programs begun between
birth and age 5 have made enormous differences."

How is FASD Diagnosed?

FASD is diagnosed after completion of a medical examination and psychological, occupational therapy and speech/language evaluations.

Medical examination - this includes:
Evaluation of the prenatal and birth history and previous medical history
General physical examination
Evaluation of early and current growth patterns
Measurement of facial features
Psychological evaluation including developmental tests to determine abilities and deficits.
Occupational therapy evaluation to determine motor functions and adaptive abilities.
Speech and language evaluation to determine abilities to understand and communicate.

Think about your child’s medical history. Write down what you know. Try to collect photos of your child taken between the ages of two and ten. Photos should be straight on, not smiling and without glasses. This may help your health provider or professional to obtain a diagnosis. Once the diagnosis is made, specific deficits will be identified. Recommendations for intervention and treatment services will then be made.

What Should I do to prepare for a Diagnosis?

Preparing for an FASD Diagnosis. Take some quiet time for each of the four categories below. Think of how your child's medical history relates to each one. Make a separate sheet of paper for each category and write everything you can think of in each subject and take this information with you to your appointment. (Source: FASD Family Resource Institute, Washington)

Sheet 1: History of Prenatal Alcohol/Drug Exposure

Did your caseworker give you verbal or written information on prenatal alcohol exposure?
Did a previous foster parent have maternal drinking information?
Request prenatal history from adoption agency.
Ask maternal relatives/friends about prenatal exposure.
Ask paternal relatives/friends about prenatal exposure
If you are a biological parent, self-reporting is considered documentation.

Sheet 2: Face/Head Characteristics

Look for "typical" FAS face structure; narrow eye openings which cause the eyes to appear wide-set, short nose for face size which leave a long, flat space between bottom of the nose and upper lip, flat mid-face, narrow upper lip, zipper missing between nose and upper lip.
Has your child had:
1. Ear/hearing problems -
include auditory processing problems you have noticed
2. Seeing/eye difficulties -
include visual processing problems you have noticed
3. Teeth/jaw malformations or needed braces?
Try to collect a sequence of school photos between 5-10 years old.

Sheet 3: History of your Child's Growth Patterns

Was your child every called a "failure to thrive" child?
Do you have medical records documenting a growth deficiency?
Was your child a premie?
Do you have school records documenting growth deficiency? or class photo?
Do you have access to pre-adoption hospital birth records?
Did you child go through precocious puberty?
Did you child loose teeth early? Get adult teeth early including wisdom teeth?
Request pre-adoption medical records concerning growth/weight information.

Sheet 4: Central Nervous System Damage (Behavior)

Difficulty concentrating or staying on task?
Difficulty connecting behavior to consequences?
Thinking rules are for other people?
Unpredictable, impulsive, unable to accept responsibility?
Lies with clear conscience, unusually manipulative toward others?
Diagnosed as Attention Deficit Hyperactivity Disorder?

Discussing the Diagnosis with Your Child

Some parents and caretakers are hesitant to discuss the diagnosis with their child. By school age, children with FASD usually recognize that they are not like others. They may have suffered teasing, frustration and humiliation in the classroom or on the playground. Self-esteem may be bruised by the time the diagnosis is made.

Having a medical diagnosis is often a relief to children with FASD. A diagnosis provides a reason for their problems. They understand it is not their fault. They can begin to understand that their mother did not intentionally hurt them by drinking during pregnancy. Parents may also feel a sense of relief. A diagnosis provides a medical reason for their child’s behavior. They can understand that behaviors may not be intentional or due to poor parenting skills.

Help me understand those crazy codes ....ICD ...DSM-IV...

ICD codes (International Classification of Disease) used for insurance purposes: http://www.mcis.duke.edu/standards/termcode/icd9/

According to info on the following URL, all DSM-IV diagnostic codes are also valid ICD-9-CM codes.
http://horizon02.mc.duke.edu/standards/termcode/dsm4.htm

The diagnostic code for the static ("unchanging") encephalopathy is:
348.3 Encephalopathy, unspecified

But...

FAS is a medical diagnosis. Code # 760.71 - According to International Classification of Disease, 9th revision, Originally published by the World Health Organization (WHO). 760.71 can also be used for ARND.

According to Dr. Sumner, Partial Fetal Alcohol Syndrome is also included as a DSM-IV Axis III (medical problems)

Other Diagnosis numbers common with FAS
RAD = Reactive Attachment Disorder, 313.89
ODD = Oppositional Defiant Disorder, 313.81
Bipolar I = 296.xx (at least 6 types)
Bipolar II = 296.89 (Recurrent Major Depressive Episodes with Hypomanic Episodes)

DSM series has long advocated what they call a "Multiaxial assessment". If you are getting a psych eval for your child, it is almost always a good idea to ask for a full multiaxial assessment.

Axis I: Clinical Disorders; Other Conditions That May Be a Focus of Clinical Attention

Axis II: Personality Disorders This Axis includes any diagnosis of Mental Retardation

Axis III: General Medical Conditions, and refers to any conditions in the ICD system that are not included in the DSM-IV. Naturally, this would include 760.71, which is for prenatal alcohol exposure, including FAS, ARND, Static Encephalopathy (if alcohol exposed), etc.

Axis IV: Psychosocial and Environmental Problems

Axis V: Global Assessment of Functioning

http://www.behavenet.com/capsules/disorders/dsm4classification.htm

Health Concerns

The most important concern for children with FASD is the altered brain function. Physical health problems related to the central nervous system (CNS) are frequent. These may include visual problems, seizures, tremors and incoordination. CNS problems may also cause a wide variety of behavior and learning difficulties.

Children with FASD sometimes also have congenital anomalies. These may include abnormalities of the ears or eyes, cleft lip and palate and heart defects. Heart defects occur in about one-third of the children. Skeletal problems such as scoliosis may also occur. Children born with heart murmurs or other defects may need monitoring, medical management or surgery. Medical management difficulties can occur if the child is unable to cooperate with the treatment plan.

Early intervention is the first step to an improved prognosis. Discuss a plan for early intervention with your health providers and professionals.

These health problems need medical attention between regular visits:

Ask your health providers or professionals when to call or bring your child in for medical care. Call for advice if you have a health concern or are unsure if medical attention is needed. Always call if your child has:

High fever or fever unusual for the child
Difficulty breathing or swallowing
Signs of depression, withdrawal, anxiety, sudden change in school performance or school attendance
Urges to harm him or herself or others
Noncompliance with the treatment plan

Periodic Health Care

Regular health care visits are important to the well-being of all children. The visits are necessary to check FASD-related problems as well as growth and development. The schedule of visits will depend on the child’s age and needs. Children are individuals and their needs will vary. Periodic health care may include any of the following health issues:

Physical examinations
Immunizations including Haemophilus Influenzae Type B (HIB)
Influenza (flu) shots
Height and weight measuring and graphing
Nutritional assessments
Vision, hearing and scoliosis screening
Discussion of the treatment plan
Discussion of the medication plan, medication effectiveness, possible side effects and adjustments
Discussion of dental and other specialty care
Discussion of development since the last visit
Discussion of emotional adaptation and self-esteem
Discussion of performance at school
Discussion of problems, questions and concerns

Record Keeping

Record keeping is an important part of coordinating health care. Some parents find it helpful to keep their own records. Others prefer to rely on their health provider’s records. If you keep your own records, you can use a loose-leaf notebook which can be divided into sections to fit your needs. Calendars or expandable pocket files can also be used.

Section topics may include:

Names, titles, addresses and phone numbers of health care team members
Immunization records
Growth charts and development records
Dates of developmental milestones such as walking and saying first words
Results of vision, hearing and scoliosis screenings
Results of vision and hearing processing evaluations
Nutritional information such as food intake
Results of tests
Dates of illnesses and complications
Daily care plans if any
Medication plans and medication side effects
Reports from hospitalizations and surgeries
Appointment dates
School records including assessments, performance reports and copies of the Individual Family Service Plan (IFSP), Individual Education Plan (IEP) and Individual Health Plan (IHP)
Resource information such as financial assistance and support systems
Copies of financial information such as bills and payments, insurance policies and applications for financial assistance

Write down questions before visits to health care team members. It is easy to forget what you want to ask during a busy clinic visit. Some parents tape record instructions from health providers and professionals. The tape can be replayed later to review the instructions. It can also be shared with others working with the child.

Specialty Medical Care

A diagnosis is an important part of management of FASD. Once diagnosed, specific deficits can be identified and interventions planned. The following medical resources are available for FASD.

Other Tips for Parents?

IT'S MUCH EASIER TO DIAGNOSE YOUNGER CHILDREN (UNDER 6) AS MANY FASD CHARACTERISTICS VANISH WITH AGE. RESEARCH INDICATES THAT CHILDREN DIAGNOSED WITH FASD BEFORE THE AGE OF 6 HAVE A MUCH BETTER CHANCE OF A POSITIVE OUTCOME.

Send for a "Fasnet Assessment Tool", an excellent 17-page pre-screening assessment guidebook developed by the British Columbia FASD Support Network with the help of funding from the Canadian Government's Drug Strategy Program. This assessment tool was developed for parents and non-medical professionals. It is not intended to make a diagnosis, but "can alert the assessor to the possibility of FASD in an individual, and of the need to obtain a thorough and comprehensive assessment where indicated." The tool looks at Infancy History, Physical Findings, Communication, Socialization, Behavior, Attention, Physical Skills, Memory, Cognition. There are 260 questions and "a score of more than 50% indicates the need for referral to a physician in order to assess the possibility that alcohol related birth defects are playing a part in the developmental/ behavioral problems of this child...(but)...children who score under 50% may in fact require an assessment." There are 5 different versions of the tool, depending on the age of the individual. You would want "2AT036," for children aged from birth to 36 months. The tools cost about $8 each Canadian, which is about $5 U.S. these days, plus postage and handling. For more info, you can phone B.C. FASD at (604) 589-1854, fax (604) 589-8438, or e-mail fasnet@istar.ca

Talk to the University of Washington asking if a diagnosis for Fetal Alcohol Effect is possible. Without the facial characteristics of FAS and without knowing exactly what the birth mother's drinking habits were, a diagnosis of FAS is very difficult to get.

It doesn't matter what the cause of the brain damage, if a person is really disabled by it, try to find a psychologist who will work you.

Have individual tested for I.Q., Achievement, Adaptation, Language, and Neuro-psychology. Request this from the school, and they have to pay for it. Request an independant evaluator, not a school employee. They have to pay for that, too. Do these things in writing. Educate yourself on the law - IDEA. Go to www.wrightslaw.com for starters.

Have your child tested for Sensory Integration Disorder. An Occupational Therapist can do this - but it has to be one with the SID training. Then get him to a University Audiology Dept for Central Auditory Processing Disorder testing. Both of these disorders are extremely prevalent in FASD kids.

Special thanks to all those who have spent time researching this issue for families in need. Also visit http://www.accessone.com/~delindam/