"So, should I medicate my child?

"
helping parents determine when medication may be effective and how to
navigate the pharmaceutical choices
Joshua D Feder, MD
Faculty, Interdisciplinary Council on Developmental and Learning Disorders
Assistant Clinical Professor, Department of Psychiatry,
University of California at San Diego, School of Medicine

January 23, 2008

at
Crimson Center for Speech & Language
9606 Tierra Grande #107
San Diego, CA 92126

Preamble

How is this handout different from my prior handouts?

• So many similar talks – so what’s new?
• I considered adding jokes: monster under bed, stealing…
• Research: mirrors, joint attention, GxE
• Updated meds appendix (to include steroids)
• This time it’s about whether to medicate, all else is commentary…

Ambling...

Being stuck.
• Most people consider meds because they feel stuck, maybe desperate
• Emergencies: aggression, depression, others?
• Lack of progress: in what areas?

What kind of progress is important?

• What do you want for your child?
• What the meaning of the disability is to you and to your child?
• Goal: a meaningful life socially, emotionally, and cognitively.
• Requires a plan, and medication alone is not a plan.

Do I have good enough program in place?

• regulatory issues/ motor and sensory areas addressed
• engagement and reciprocity
• language/ communication
 • cognition/ learning
• daily living skills followed by broader and broader areas of life skills, from
school and playground to vocational skills.

Current trends in research:

• Mirror neuron systems
• Joint attention and relationship-based intervention
• GxE: genetics and environment

The Impossible Program:

• Are you asking too much of the child?
• Of the family?
• Of the school?

Will meds work?

• Is the program adequate?
• Will they change my child’s brain and fix it?
• Will they injure my child?
• What should I expect?

Why wait at all?

• Losing time while pulling the program together
• Doing as much as possible
• Awakenings – should we go for a miracle?

Coming to rest

Every family is different

• We do not know enough to say ‘you really should medicate’
• If there is no emergency, you have more time to think about it
• When parents differ, if makes for more thoughtful planning

Notes:
APPENDIX A

An Approach to the Use of Medication for Developmental and Learning Disorders

Trust Me…

• Few doctors have the time to do this well – it’s messy and takes time, so they
may stick to a ‘medication management’ model.
• Involves, if nothing else, the need to reframe BPS to SPB

Marketing medication

• Risperdal approved
• Market share
• Good news – it can help
• Bad news – weight, diabetes, TD, dystonia, NMS
• How do we know a medication is helping?

Efficiency Studies

• DBPC Efficacy studies hard to do well – clean diagnosis

• Efficiency studies – ‘all comers’, canceling out confounding variables
• We await more research (CAPTN, etc.)
• In the meantime, we do what think helps, hopefully with a rationale

General Approach:

• Are you trying to save a placement or make up for a bad one?

• Are meds a last resort or is it unethical to withhold them?
• Availability - doctor MUST stay in touch with family and school
• Rapid, large, or multiple changes are often problematic
• Grid target symptoms vs. possible meds and fill in possible +’s & -‘
 GRIDDING OUT TARGET SYMPTOMS VS. TREATMENTS

Anxiety

Tics
Targets

(“aggression”)InstabilityMood

Comments
interactionReciprocal
PlanningMotor

Sleep
Cognition
Attention

Depression
Activity

PerseverativeO/C, rigidity

SensitivitySensory
Stimulants + ++ - + - - + - +? - - - Wt
Ht
tics
SSRIs - - + - + -/+? ++ +? -? Wt
Ht
Neuroleptics +? -? + - +? +++ - + ++? +? + + Wt
/+? TD
NMS

AEDs +? - + - +? ++ -? +? +? +? +? + Mult.
/+? /+? -? SE…
Steroids -? -? +? +? _/+? -? +? -? ++? -? +? -? Mult
SE…
Central Alpha +? +? +? -? +? 1/+? -/+? +? +? +? +? + Sleep
Agonists +? BP

Etc…
LIST ALL
OTHER
TREATMENTS!

Bottom Line

• have a good overall picture of a person and the context,

• have a good working relationship with your doctors and other helping
professionals,
 • brainstorm the set of possible interventions, including medications, non-
medical therapies, environmental circumstances and supports,
• sort all the above out and create a workable plan for each individual.

Appendix B

Understanding Your Doctor

Care and feeding of your doctor:

• Find a doctor you like and feel you can work with
• AACAP people promised to be ethical and do their best
• APBN Board Certified Child and Adolescent Psychiatrists were checked for
competence in assessing autism, esp in infants and children, and for the regular
use of collateral information from family, school, and other professionals.
• Keep the doctor in the loop
• Don’t overwhelm with data
• Think carefully before rapid, large changes in dose or before changing more
thing than one thing at a time.
• Respectfully offer resources – don’t expect your doctor will read a book for you,
but do expect your doctor is interested in other opinions from other doctors

What About the….

• Vitamins and Supplements?

• Oxygen?
• Chelation?
• Treating Yeast?
• GFCF Diets?
• Neurofeedback?
• SPECT Scans?
• What about the DAN! Protocol?
• Etc., etc.

Why don’t allopathic (MD) physicians move quickly to endorse these?

• Responsibility and Liability

• Reimbursement and Lack of Business Acumen
• Training and Tradition
• Not seen as in the purvue of medicine, even though officially psychiatric and
truly neurodevelopmental
• Medical information is constantly evolving, yet these ideas are so far afield of
 the ever more rigorous manner of accepting medical information in
treatment protocols that they are bound to be left to the side.
• Public pressure has led to funded studies of thimerisol, secretin, and more
recently neurofeedback. So far, no data in support, but the people who
derive their income from these treatments remain critics.
Appendix C

Summary of Greenspan on Empathy (5/04 podcast):

Empathy is not inborn. It’s not like fear or anger, but more like love and compassion.
The mechanisms are there to develop it, but it depends on the person’s experiences to
develop. A truly empathic person can understand how another person feels; tunes in and
listens and truly understands and is there w/ you – emotional tone, posture convey can be
in your shoes and make you feel better but not so much that they exaggerate your feelings
not just a few mechanical questions w/out the feeling level beyond intellectually. Can be
taought to any child, and if you start late it is harder to do but it is still possible.

level 1 - Shared Attn and Regulation (0-3 months):

• First relationship, experience empathy for the first time

level 2 - Engagement and Relating (2-6 mo)

• Depth of that relationship is the depth of empathy.

level 3 - Two-Way Purposeful Communication (4-9 mo)

• Reading and responding to emotional signals at 8-9 mo
• Sense them and feel them in the body, physically

level 4 - Shared Social Problem Solving (9-18 mo)

• Negotiating problems – 18 mo
• Beginning of cooperative, collaborative interaction – 18 mo
• Shared humor between toddlers at 18 mo
• Behavioral evidence of altruism: pat mommy’s arm (may be imitation at this
point), also around 18 mo

level 5 - Creating ideas (18-30 mo)

• Shared pretend play at a symbolic level
• Shared world of emotions – joy, anger, sadness, etc.
• Child not only feels empathically but can think empathically.

level 6 - Building Bridges Between Ideas: Logical Thinking (30-48 mo)

• Cause and effect: asks why you feel that way
• Can separate his internal world from your world, and still feel concerned

level 7 - Multi-Cause Comparative Thinking (4-6 yr)

 • Mom’s mad, bad day at work, but asks if there are other reasons.

level 8 - Emotionally Differentiated Gray-Area Thinking (6-10 yr)

• Hierarchies, playground politics
• The best time for disappointment – better to lose now and have mom’s support
than to lose as an adult and have no experience to fall back on.
• Emotional experiences define, expand, and deepen the boundaries for the self.
Without anger we don’t know what annoys us, without joy we don’t know what
makes us happy.
• Refining the gradations of these emotions
• This expanded and deepened appreciation for emotional experience makes us
more able to appreciate it in others.

level 9 - Intermittent Reflective Thinking, A Stable Sense of Self, and an Internal

Standard (9-12 yr and beyond)
• Really adolescence and beyond…
• the ability to empathize in a truly reflective manner
• able to understand a range of feeling in others and compare it to your stable sense
of self, retaining who you are
• helps you to be truly a great friend or partner.
• Reflecting on yourself and others w/o taking over nor removing yourself
• Expanding sense of empathy, more and more inclusive: other kids, groups, school,
country, … the world (other races, religions, etc.).

Advice, in general in working with people with special needs, is to provide more than
usual opportunites for experiences that reflect empathic thinking, in pretend play and
everyday life, asking about what others might be feeling, asking opinions and avoiding
rote thinking.

Resources:
1. Engaging Autism – Greenspan and Wieder
2. Playground Politics – Greenspan
3. ICDL.com: lots of free information, including hours and hours of free podcasts –
learn as you drive to work!
4. ICDL Guidelines: 800 pages in 8 pdfs of free comprehensive information:
http://www.icdl.com/staging/bookstore/catalog/clinical.shtml
5. The Floortime Foundation: books, dvds, other resources
6. http://floortime.org/
7. Celebrate the Children: very practical information specific to schools
8. http://www.celebratethechildren.org/
9. Dr. Feder’s Free support group: Next meeting is December 5, 2007, 1030 am, at
415 North Highway 101, Suite A, Solana Beach, CA, 92075.
Appendix D

Medication for the Treatment of Autism and Autism Spectrum Disorders

Many families wonder about the use of medications to treat autism and related disorders
(ASDs). For decades doctors have been using many different medications ‘off-label’ to
treat various symptoms of these disorders. In 2007 one medication, risperidone
(Risperdal) was given the first FDA approval for marketing a medication for autism,
specifically for the control of aggression. Medication can sometimes be very helpful,
making it possible to utilize other treatments more effectively. At their best, some people
have remarkable improvement in social awareness. However, medication cannot make
up for an inappropriate placement or poor staff training. Also, families need to weigh the
benefits of medications against side effects and work closely with the prescribing
physician. Here are examples of medications and classes of medications often used:

Neuroleptics (Antipsychotics): These medications have the most research about their
use in persons with ASDs. All are FDA approved for schizophrenia, but virtually all can
help with mood stabilization in bipolar illness and with mood stabilization and aggression
in ASDs. Neuroleptics are very helpful for tic disorders (Tourette’s, etc.). These
medications can also occasionally create significant improvement in social function,
leading many doctors to recommend them as first line treatments for ASDs. These are,
however, powerful medications and side effects, depending on the medication, can
include weight gain, insulin resistance, sedation, agitation, changes in cardiac conduction,
higher risk for seizure, new abnormal movements and muscle spasms (dystonias, Tardive
Dyskinesia), and rarely a dangerous fever with muscle stiffness (Neuroleptic Malignant
Syndrome). These medicines are often used safely but require good follow up and good
communication between family and the physician. Members of this class include
chlorpromazine (Thorazine), molindone (Moban), fluphenazine (Prolixin), thioridazine
(Mellaril), haloperidol (Haldol), trifluoperazine (Stelazine), etc.; and the new: clozapine
(Clozaril), risperidone (Risperdal), olanzapine (Zyprexa), quetiapine (Seroquel),
ziprasidone (Geodan), and aripiprazole (Abilify).

Serotonin Specific Reuptake Inhibitors (SSRI’s): These medicines are often used with
persons with ASDs to target depression, anxiety, obsessiveness/perseveration, and rigid
thinking. While often helpful, they also frequently create ‘behavioral activation’, i.e.,
make the person more active and impulsive. This can interfere with learning. People
sometimes gain weight on these medicines over time (many months or years). People at
risk for manic episodes can become manic or hypomanic on these medications. These
medicines can also raise seizure risk, and in combination with other medicines (MAOIs,
buspirone, etc.) can create a risk for a potentially dangerous Serotonin Syndrome. Again,
used with care these medicines can be very helpful. The SSRI’s include fluoxetine
(Prozac), sertraline (Zoloft), paroxetine (Paxil), fluvoxamine, citalopram (Celexa), and
escitalopram (Lexapro).
Stimulants: These are the medications most used for Attention Deficit Hyperactivity
Disorder (ADHD), and given the apparent genetic overlap between ADHD and autism,
and the frequency of ADHD symptoms in persons with ASDs, it makes sense to consider
these medications too. While early studies found them ineffective in autism, more recent
work and clinical experience shows they can help with inattention and overactivity in
some persons with ASDs, but they do tend to have more trouble side effects. Side effects
can include loss of appetite, sleep disturbance, irritability when the medicine is wearing
off, tics, increased sensory sensitivity, increased obsessiveness/ perseveration or rigid
thinking. Stimulants are a good example of a class of medication that can often be used
with good effect when in combination with another medicine that balances the side
effects, and equally a good example of medications that are pretty safe but easy to dislike
because of side effects. Most stimulant medications in use are different packing and
delivery systems of either methylphenidate or dextroamphetamine. Names of
methylphidate type medications include Ritalin, Metadate, Methylin, Concerta, Focalin,
and Daytrana. Dextroamphetamine type stimulates include Adderall, and ‘mixed
amphetamine salts’. A ‘prodrug’ called Vyvanse has just been releases on the market. It
becomes dextroamphetamine once in the body and may have less street value because of
this. Despite real concerns about addiction to stimulants, it is important to note that most
people are not as risk for addiction and, when used appropriately, the risk of substance
abuse for people with ADHD using these medicines is actually lower than expected,
presumably because they make better decisions. In any case, people treated with
stimulants require cardiovascular screening and follow up (history, blood pressure, pulse)
as well as monitoring of weight and growth as these can be affected (likely due to
reduced appetite).

Tricyclic Antidepressants, such as clomipramine (Anafranil), imipramine, desipramine

(Norpramin), nortriptyline (Pamelor), and amitriptyline (Elavil) are older medications
that some people still use for depression and anxiety, inattention,and bedwetting. While
clomipramine can be an excellent medication for obsessive-compulsive symptoms too,
these medicines require careful cardiac monitoring and can be cardiotocix in overdose
and must be used with caution.

Norepinephrine-Serotonin Reuptakes Inhibitors: these include venlafaxine (Effexor),

mirtazapine (Remeron), duloxetine (Cymbalta), and nefazadone. They are ‘dual-action’
antidepressants and as a class they tend to be about as effective as SSRI’s for depression
but often have less activation associated with them. Cautions are similar to SSRIs with
additional need to monitor blood pressure if there is already a concern for high blood
pressure.

Bupropion (Welbutrin) is another antidepressant that is dopaminergic and therefore in a

class of it’s own. Like stimulants, which also affect dopamine systems, it tends to help
focus and concentration, reduces craving for carbohydrates (and also tobacco and
alcohol), and may have a place for some persons with ASDs who otherwise lack energy
as they are generally activating. They also increase seizure risk in those who are
susceptible (with ASDs, the more challenged the person is the higher the seizure risk, also
there seems to be an increased risk in the teenaged years for seizures in persons with
autism).

Antiseizure medications, also known as Antiepileptic Drugs or AED’s, include

valproate (Depakote), carbamazepine (Tegretol), lamotragine (Lamictal), oxycarbazine
(Trileptal), topiramate (Topomax), gabapentin (Neurontin), ethosuccimide (Zarontin), and
others. These are medications used for various kinds of seizures and all, to some degree,
are used for mood stabilization in persons with Bipolar Disorder. They are often used to
help persons with ASDs attain better mood stability, however they all have different side
effects and many require blood levels. A full discussion is not possible here, but it is
important that your doctor knows and discusses with you the various options and ways
these medications are prescribed. As a class, AEDs are also often quite useful in the
treatment of persons with ASDs, particularly when there is suspicion that part of the
underlying difficulty includes subclinical seizure activity that makes the person seem
unfocused and at times unruly. Often a 24 hour EEG and a neurologic evaluation are
helpful in deciding whether to try these medications.

Central Alpha Agonists such as guanfacine (Tenex, Guanfacine XR) and clonidine
(Catapres) are medicines that were originally marketed for high blood pressure in adults
but because they reduce the ‘fight-flight’ function of the autonomic nervous system they
have a role in the treatment of many other disorders. These medications can help with
attention and focus, reduce tics and sensory sensitivity, and generally calm people with
ASDs. They can also make people sleepy, dizzy, or cranky. Used with care these
medicines are usually helpful, and often used in combination with other medications such
as stimulants.

Atamoxetine (Strattera) is a non-stimulant medication for ADHD, that is a lot like an

NSRI and carries similar cautions to NRSI’s and SSRI’s. Like with all persons with
ASDs, some people respond well, others have significant side effects, e.g. agitation.

Benzodiazepine medications such as diazepam (Valium), alprazolam (Xanax),

clonazepam (Klonopin), and lorazepam (Ativan) are excellent anti-anxiety medications,
but they tend to interfere in learning, memeory, and coordination, and they can be
addicting for both persons with ASDs and for family members who might borrow them,
and their role in the safe treatment of ASDs is limited by these cautions.

Naltrexone (Revia) is an opioid antagonist used in the treatment of alcohol and drug
addiction, which has also been tried for persons with ASDs, specifically to help with self-
injurious behaviors. While no good research studies have proven that this helps
controlled populations, but like with most treatments for ASDs, there are scattered reports
of good success attributed to naltrexone. Liver function should be monitored.

Memantine (Namenda) is a medication marketed to help persons with Alzheimer’s

Disease retain cognitive function, and there are now several reports of its use in persons
with ASDs, again with scattered reports of success in improving cognitive function.
While it appears to be fairly safe, the long term effects of the use of this medication, like
with most medications, particularly in developing children, is unknown.

Steroid Treatment: Some doctors prescribe courses of steroids, usually Prednisone, and
usually to infants and very young children with autism or with sudden regression of
development, whom they believe may have a variant of Landau-Kleffner Syndrome
(LKS). LKS is a disorder typically seen in infants or very young children who have
severe seizures, and the steroids seem to help some of them stabilize and allow for more
normal development. The treatment has potentially serious side effects which must be
discussed with your doctor, although different methods of timing the steroids can help
reduce side effects.

This is by no means an exhaustive list as there are many other medications used in the
treatment of ASDs. It is important to work closely your doctor, to avoid rapid or large or
multiple changes in medication if possible, and to be sure to look at the entire range of
interventions for the person rather than to become focused on medication as the ‘answer’
to the many many challenges of living with Autism and autism spectrum disorders.

Joshua D. Feder, MD