Wednesday, January 23, 2013

Holy crap-after waiting a year-you've finally gotten an appointment! Now what?

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 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.

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.

·         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.

·         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?”

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.

·         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.

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.

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


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