So, you've finally gotten the appointment. After waiting a year (and sometimes more) you are actually getting in to see the developmental pediatrician. If you are like me-you have been waiting so long, that by the time you do get in-you lose sight of why you made the appointment to begin with! So much may have changed in that year of waiting. Your child may have changed, your needs may have changed...you start to wonder.."Why are we going?".."What exactly is going to happen at this appointment?" "What can I expect?" and (I think) more importantly-"What should I expect?" I know that I could have really used some information before our appointments.
Thankfully, we have just the person to ask. Dr. James Coplan, (who blogs here and here) is the author of "Making sense of Autistic Spectrum Disorders". He was very gracious to take the time and answer some questions for me. (more info on Dr. Coplan is on bottom of post) After reading this, I think you will agree-the man knows his stuff. Whether or not you are new to diagnosis-I think that this is insightful for everyone.
What
is a developmental pediatrician?
A Developmental Pediatrician is,
first and foremost, a pediatrician – a physician who has
completed a rigorous training program in general pediatrics, and been certified
by the American
Board of Pediatrics. Developmental Pediatricians complete
additional training in either Developmental-Behavioral Pediatrics (D-BP), or
Neurodevelopmental Disabilities (NDD). For additional information, go here.
More
than you probably wanted know
Strictly speaking, there is no
such thing as a “developmental pediatrician.” Rather, there are Developmental-Behavioral Pediatricians,
and Neurodevelopmental Disability
Pediatricians. Most of the time this distinction doesn’t matter, and in
day-to-day usage, we use the term “Developmental Pediatricians” to encompass
both Developmental-Behavioral Pediatrics (D-BP) and Neurodevelopmental
Disabilities (NDD). I am one of the
few pediatricians certified in both D-BP and NDD. To make matters even more
confusing, Child Neurologists also can take NDD training, and become
board-certified in Neurodevelopmental Disabilities. Child Neurology is an
offshoot of internal medicine, not pediatrics, so most Child Neurologists are
not pediatricians.
And what you
really do need to know
You
may not be interested in the finer details of the doctor’s training (although
some people have Googled me all the way back to High School!), but what you
need is a doctor who can listen to your
story, establish rapport with your
child, perform a competent neurological
exam and developmental assessment, and talk with you in terms you can understand. You want the doctor to
be knowledgeable regarding medical
diagnosis, developmental diagnosis, behavior
management, family function,
and community-based therapy services
(public and private). Finally, you want the doctor to be someone you and your child both will look forward to going back to periodically.
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What
can I expect at my first appointment?
Even before the visit itself, the
doctor may ask you to fill out a questionnaire, and may have gathered up
whatever records already exist (hospital discharge summaries, Early
Intervention or school evaluation summaries, therapist reports, etc.). You can
expect the doctor to have reviewed these child’s records before the day of the
visit. The visit itself typically has
three phases: History-taking, evaluation, and post-evaluation counseling.
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History-Taking
The doctor should sit down, give
good eye contact, put you at ease, and encourage you to tell your child’s story
in your own words, while occasionally asking you clarifying questions (“Can you
tell me a little more about that?” etc.). Once you have finished describing
what you are worried about, the doctor will complete the history-taking portion
of the evaluation, including additional details about your child’s development,
as well as your child’s medical history, family history, and social history.
This information is helpful to put your concerns about your child into a larger
context, and may lead to specific recommendations regarding medical evaluation,
developmental intervention, and/or measures to address family function.
In my practice, I require both
parents plus a third adult to attend the initial visit. I bring the parents
into my office, and leave the child in the waiting room under the supervision
of the third adult (typically a grandparent). This gives the parents a chance
to speak freely about their child, rather than talking in front of the child.
Having both parents present highlights differences in parental perceptions or
management styles, that are often just as important as the specific details
of the child’s development. This is particularly true if the parents are
separated or divorced. Both parents need to believe that they have been given
a fair hearing, and that my evaluation is non-partisan, and meant to serve
the child’s needs.
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·
Evaluation
The
next portion of the visit involves direct interaction with the child. Developmental
testing typically includes measures of your child’s verbal and non-verbal
abilities and academic skills, if relevant. The specific measures will vary,
depending on your child’s age, developmental level, and the preferences of the
physician. Developmental testing by the pediatrician is similar to what a child
psychologist or speech-language pathologist does, but briefer, less formal, and
should not use instruments that are reserved for use by psychologists or SLP’s.
The purpose of developmental testing (in my view) is not to duplicate what a
psychologist or SLP can do. Rather, it’s to enable the pediatrician to compare notes with the psychologist or
SLP – in the same way that a pediatrician or internist may look at an X-Ray,
form his or her own opinion, then talk to the Radiologist. If you are at a
multi-disciplinary clinic, the developmental evaluation phase of your child’s
visit also may include assessments by other clinicians in addition to the
doctor, such as a psychologist, Occupational and/or Physical Therapist, or
Speech-Language Pathologist. You may be interviewed by a social worker.
Ideally,
your child will be given a chance to warm up to the doctor before any testing
begins. In my practice, once the parent interview is completed, the parents
and I return to the waiting room. I instruct the parents to play with their
child, as if they were at home, and not to worry about getting their child to
perform for the doctor. Initially I sit across the room and observe. Then,
bit by bit, I approach the child and eventually try to insert myself into the
child’s play, still letting the child direct the interaction. Of course, all
of the child’s behavior during this phase of the visit helps me in forming my
diagnostic impression, but the child does not feel the as if he or she is
being “tested” at this point. Once the child is comfortable with me, we move
on to the next phase: Developmental testing. This means shifting from the
waiting room (full of toys) to the examining room (bare, except for whatever
toys or other items I produce out of my desk or bag). Depending on the
child’s age and developmental level, testing may occur with the child seated
on the floor, in a parent’s lap, or seated in a chair at the table. The
parents are present as observers, but I instruct them beforehand to remain
silent, and direct their eye gaze towards me. This gives the child the
unspoken message that I am the only source of adult attention for the moment,
and has the effect of greatly increasing compliance. Another reason I bring
parents into the room during developmental testing is so that they can let me
know afterwards how well I did at eliciting their child’s cooperation, and
respond to the question “How did your child’s behavior compare to what you
thought he or she would do under these circumstances?”
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The
next portion of the evaluation phase will be a physical and neurological
examination by the doctor. You should be present for this portion of the
examination. Sometimes, with teens, the doctor may ask you to step out, and
have a nurse in the room instead. The doctor will look for any findings on
physical exam that might offer a clue as to what’s going on developmentally. During
this phase of the evaluation the doctor will also look at gross and fine motor
skills, tone, and coordination in ways that overlap with what an Occupational
Therapist (OT) and Physical Therapist (PT) do. As with the assessment of
cognitive and language skills (which overlap with the domains evaluated by a
psychologist and SLP), this portion of the evaluation is not meant to replace
what an OT or PT can offer. Rather, by doing a hands-on evaluation, the doctor
will be able to meaningfully compare his or her impressions with those of an OT
or PT.
Occasionally
I come across a situation where someone has referred a child to a Child
Neurologist, “because the child needs a neurological exam.” In actuality, one
does not need to be a neurologist in order to perform a neurological exam.
Most Developmental-Behavioral Pediatricians, and all Neurodevelopmental
Pediatricians, are capable of performing a comprehensive neurological
examination. I frequently refer children to Child Neurologists for a second
opinion if I find an abnormality on neurological examination. But if my
neurological exam is normal, then sending the child to a Child Neurologist for
a second exam is unlikely to turn up additional information.
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·
Counseling
The
final phase of the visit involves summing up the findings and making
recommendations. If your child’s evaluation is being conducted by an
interdisciplinary team, there may be a wait of several days or more between the
evaluation phase and the parent conference. During the parent conference, the
doctor (and sometimes other members of the team) will share their diagnostic
impressions. These will include some statement regarding your child’s
underlying developmental diagnosis and medical diagnosis, as well as
recommendations regarding further testing (medical or developmental), and
intervention (therapies, school, etc.). The doctor and/or social worker should
explain what will happen next (how to connect with your Early Intervention
provider; applying for Medical Assistance, etc.) Finally, the doctor should suggest a time for
a follow-up visit, to see how your child is progressing, and to see how well
you are doing, both emotionally and with respect to putting together the necessary
team of people to help your child.
In
my practice, counseling occurs immediately after completion of the evaluation
phase. Upon completion of the physical and neurological exam, the child
returns to the waiting room and goes back under the watchful eye of the third
adult; the parents accompany me into my office. Having the child out of the room
lets the parents give me their undivided attention, and gives the parents a
chance to react emotionally. My practice is a bit unusual. Most physicians do
not require a 3rd adult, or even that both parents attend. This is
unfortunate. Often, it is inappropriate to talk about a child in front of the
child, and it is supremely unfair to burden one spouse with the task of
having to go home and tell the other spouse “what the doctor said.” This is
doubly true if the parents are separated or divorced.
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What
are the questions I should be asking?
Remember the things every cub
reporter is taught to put into each news story: Who, what, when, where, why, and how.
·
Why?
Why isn’t my child walking, talking,
or behaving as other children the same age? This question has two answers: the
developmental diagnosis, and the medical diagnosis. For example, if your child
has no eye contact, echolalia, stereotypies, and insistence on routines, the
developmental answer may be “Your child has Autism Spectrum Disorder.” For a
physician, however, ASD is just a list of symptoms. The deeper “why” is
medical: Your child has ASD because of
some underlying medical condition (Fragile-X, some other genetic or metabolic
abnormality, family genetics, etc.). Sometimes, answering this medical “why”
leads to additional information about medical care, prognosis, and/or can
enable you to link up with other parents whose children have the same underlying
medical condition. There is always strength in numbers. Sometimes the medical
“why” also touches on another parental concern: Could this happen to us again?
Or, what about our children’s children?
·
What, Where and How?
What can we do to help our child achieve
his or her milestones? This includes a discussion of different forms of
therapy, who the therapy providers are, as well as where and how to get your
child enrolled in services.
·
When?
When will my child achieve specific
skills? Sometimes the best answer to that question, especially at the initial
visit, is “I don’t know.” In fact, I would be a bit skeptical of anyone who
tries to give you unequivocal answers to prognostic questions at the initial
visit. “Wait and see” all by itself is never an appropriate strategy. But
“Let’s start therapy, and then revisit this question in a few months” is
usually acceptable, and often preferable to offering the family hasty
predictions (pessimistic or optimistic).
What
is the most important thing(s) we can tell the doctor?
This
may sound corny, but the most important thing you can tell the doctor is exactly what’s on your mind. Sometimes
parents are embarrassed or afraid to speak their mind. Don’t be. Some parents are
afraid of disagreeing with their spouse. Don’t be. This is a time when the
doctor needs to hear from both of you. Don’t
worry about asking the doctor “stupid questions.” There is no such thing as a
stupid question, and any doctor who makes you feel otherwise isn’t someone you
want to go back to. Likewise, don’t be afraid to ask the doctor to repeat
something, or re-phrase it, until you actually understand. And don’t be afraid
to redirect the doctor, if necessary: “Doctor, I need you to talk about X.” What
the doctor doesn’t want is for you to say to yourself in the car on the way
home “I never got to talk about what was really bothering me.”
How should I
prepare my child for this visit?
Be
sure you and your child both get a good night’s sleep the night before the
visit.
The
specific information you give your child will depend on your child’s age and
developmental level. For preschool children, something like this is usually
enough: “We are going to see a new doctor, like Dr. X (your child’s regular
physician). The new doctor will ask you some questions, play some games with
you, and do a checkup, but no shots.” You might want to tell your child a few
days ahead of time, show them on the calendar, and then repeat the same
information each day, marking off the days until the visit. For older children, who may be aware that they
are struggling, or somehow different from their peers, something like this is
good: “We know that you have a hard time with (X). This doctor may be able to
help make it easier for you.” It’s also good to tell older children in several
days in advance, but children who are anxious or obsessive may get overly fixated
on the impending visit. If that describes your child, then telling your child
one day in advance is probably best. You definitely do not want to spring the visit on your child as a surprise, on the
morning of the visit.
Your
attitude is just as important as whatever specific factual information that you
convey to your child. If you are calm and relaxed about the upcoming visit,
your child is more likely to be calm and relaxed too. If you are anxious or
fearful, your child will “catch” those feelings and become anxious and fearful.
I realize that this may be asking the impossible of you, especially if you are
(a) worried about your child, and (b) you have had to wait a long time for the
appointment. The best thing to remember is “I don’t have to get everything out
all at once. I can take this one step at a time.” This carries over to the
doctor’s office: Try to refrain from urging your child to perform for the
doctor (unless asked). This can be difficult!
What do I do if
I feel that I’m not being listened to?
The
best thing to do is be candid, in a way that is clear, but non-confrontational.
Make “ ‘I’ statements” rather than ‘You’ statements.” Saying “Doctor, you just
aren’t listening!” is not going work as well as saying “Doctor, I just don’t
feel that I’m making myself clear.” The former way of putting it is liable to
make the doctor feel defensive or impatient. The latter way of putting it may
elicit extra effort from the doctor, and a clarifying question such as “Tell me
what you mean.” If it doesn’t, then you may need to find a physician who is a
better listener. On the other hand, be wary of quacks, who are very good at
sounding sympathetic, but whose technical skills and methods are suspect.
Quackery thrives in part because of the substandard listening skills of some
members of the mainstream medical profession.
What should I
expect after the visit?
You
and your child’s primary care physician should each receive a detailed,
typewritten report summarizing your concerns, a brief synopsis of the outside
records, a summary of the findings during the evaluation, and the specific
recommendations. This report should be written in terms a lay person can
understand. If there are recommendations for medical testing, the report should
spell out whether the developmental pediatrician will be doing them, of if they
have been deferred back to the primary care physician. The doctor is not doing
you some kind of favor by writing a report; it is his or her legal
responsibility to document what happened during the visit, and you have a right
to receive a copy of the report in a timely fashion. Typically, the report also
will include a suggested time for a follow-up visit. In many instances, one or
more follow-up visits will be necessary in order to determine your child’s rate
of progress, and in order to monitor the “fit” between your child’s developmental
situation and the services he or she is receiving.
In
my own practice, about one third of families come just
for an initial visit; another third come “like clockwork” every six to 12
months, and the final third come episodically, usually when there is a crisis
or major transition in the child’s life. Distance is not as much of a factor
as you might think. I have families from all over the country who come to see
me on a regular schedule. I also have families that live nearby who ought to
be coming in for routine monitoring, but who only call when there’s a big
problem.
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Dr. Coplan completed his residency in pediatrics at Hartford Hospital (1973-75), followed by two years in the National Health Service Corps (1975-77). Then he completed his fellowship in Child Development at the Kennedy-Krieger Institute (1977-79). From 1979 to 1997, Dr. Coplan was the director of Child Development in the Department of Pediatrics at Upstate Medical Center in Syracuse, NY. In 1997 Dr. Coplan moved to The Children’s Hospital of Philadelphia, where he was the Director of Leadership Education in Neurodevelopmental Disabilities from 1997 to 2004. Since 2004, Dr. Coplan has been in private practice in the Philadelphia suburbs, while maintaining teaching ties to the medical school and the School of Nursing at the University of Pennsylvania. In 2010, Dr. Coplan published Making Sense of Autistic Spectrum Disorders, a book for parents of children with ASD. More information on Dr. Coplan is available here.