Inspired to think outside my usual box by Dr. Eric Topol, author of  Creative Destruction of Medicine this morning, I began to ask myself: how can I help parents who may not have access to experienced care, who fear that their child may have an eating disorder, make that diagnosis and get help?  Where do I start?

Well, start first with self-examination.

We doctors are made very uncomfortable by any talk of patient autonomy or patient empowerment. The words “self diagnosis” are said with scorn. The reason usually given is that self-diagnosis, where patients do a lot of their own research, diagnose themselves or family members, have access to lab studies and collaborate — even usurp — the treatment trajectory, will degrade the quality of medical care. They might make mistakes.  They might misinterpret information.  True.  But so might we all.  In my opinion, the real source of physician discomfort is the sneaking suspicion that our livelihood is being threatened by the enormous expansion of access to information that the web provides.  This is guild protectionism at its worst, and unnecessary to boot, but more to that point in a later blog.

Back to self-examination: if I am successful at teaching parents how to make a diagnosis of childhood-onset anorexia nervosa, is it a responsible thing to do?  Will it lead to better care?

Why not?  Earlier diagnosis is almost always advantageous to better outcome.  It rarely benefits outcome to wait until the patient is “really sick” to intervene.

In the area of childhood eating disorders, I am the doctor.  In all other areas of my life, I am the patient.  What have I learned from my own experience as a patient?

I have principally learned that we patients are on our own in the world of improving health and medicine. Even the best doctors who care (and they can be hard to find) are operating within a system that encourages, even mandates, a huge number of patients and office visits every day.  No one can keep the individual details of such a patient load straight.  And doctors, in general, are quite the techo-phobes, reluctant to embrace technology that might help them do this.  Hiding behind “humanism” and fear of the “de-humanization of medicine”, they often refuse to learn how to track and monitor patients better through innovative technology. De-humanization of medicine? Are you kidding me?  Medicine today is already so de-humanized it may never find its way back to us mere mortals.  But that’s a different story. The real story here is that we–you and I and the people who love us– are our own best advocates when it comes to our own health and that of our children.  Doctors can be our guides, our mentors and our teachers.  They can remove our cancer, operate on our trauma, prescribe life-saving drugs, as well as translate confusing lab results and advances in their field.  Oh, excuse me, did I say “their field”?  Actually it’s our field: the field of our own family’s health. There are not many competent diagnosticians in this country when it comes to childhood anorexia nervosa.  Many people purport to be able to make this diagnosis: pediatricians, therapists, psychologists, dieticians and psychiatrists. But how up-to-date are they really?  Still living in the clouded, highly inaccurate world of the DSM-IV?  I recently heard a Board certified pediatrician testify in court that to make the diagnosis of anorexia nervosa in a child, they must have lost over 15% of their body weight.  Sigh.  I won’t torment you with the details, but that wasn’t even true for the DSM-IV and all vestiges of it have been erased from the DSM-5.  It’s a misunderstanding, but one that can make the difference between a child getting help… or not.

Kartini Clinic contributed data and expertise to the formulation—however imperfect—of the new DSM-5. By the time the DSM system was being over-hauled, it had become obvious internationally that children were not miniature adults and that the presentation of anorexia nervosa in young people could look like the adult form…or not.  To make the diagnosis of anorexia nervosa in your own child you will not need to be familiar with, or even have read, the DSM-5 manual or any other.  You can be far in advance of the average practitioner by understanding a few basic principles and by doing your homework conscientiously.

These are those (ten) principles:

1. Be not afraid.  You know your own child better than anyone else does.  If you suspect there is a problem, there probably is.  But we need to try and determine what that problem might be.

2. Before you jump to a diagnostic conclusion, do as I would do and get the data together.  The important data for you will be family history and growth chart. Let’s take these things one at a time

3. Believe it or not, a family history is very, very important.  Even for a physician it is hard to know and hard to remember, all their relatives’ medical histories.  Research your family.  Anorexia nervosa is highly heritable.  If your child has a first degree female relative (mother, sister) who has ever had an eating disorder, their chance of having an eating disorder themselves is probably 6-10 times higher than another person without such a relative.  If the relative with an eating disorder is a male, the chances are even much higher. So if you know that your child has a genetic relative who has had an eating disorder, this will increase your index of suspicion. This is how a good diagnostician thinks, and you can too.  If the family history is negative (no one with an eating disorder) it doesn’t mean your child doesn’t have one, it just means that we need to keep an open mind about other possible diagnoses.

4. Get the growth chart. Insist. It belongs to you. The number one mistake we see pediatricians make is to misinterpret the information from a child’s growth chart. Parents are not as susceptible to this, in general, because they are more focused on their own child and less on what “the Academy” or “the literature” is telling them about BMI and weight in general, which is all obesity-paranoid and will not serve us well here.  Pediatricians (and others) make the mistake of thinking that if your child has lost weight (or failed to gain) and they are still on the normal growth chart percentiles, there is no problem.  This could not be more wrong!  Weight loss in childhood is not normal and overweight kids get anorexia nervosa too.  So ignore which percentiles are “normal”. The real questions is: has your child lost weight? Have they failed to gain weight since the last time they saw their doctor?  If the answer is yes to either, you will need to get to the bottom of this ASAP.  Is it anorexia nervosa?  Is it another medical problem?  You may need to fight for this one. I will show you how.  Make copies of the growth chart, one for yourself, one for your providers, and one for any relatives who challenge you.

5. Watch and wait (briefly).  This is important. Once your index of suspicion is high you will need to observe closely. Is your child eating normal amounts and still losing weight? Write down what they eat. This is part of your homework. Data needs to be in writing. If the answer is “yes, they are eating”, it is critical to notice whether they seem to be eating normal amounts, but avoiding certain constituents, such as fat and/or sugar.  Fat avoidance is deeply, deeply suspicious. Ignore all protestations of “health” and “heart health”. Try to serve something you know your child likes — or “used to” — that has fat (ice cream? chocolate chip cookies? cake? cheese? ) and see if they will permit themselves to eat it.  If not, you are probably dealing with a restrictive eating disorder, loosely referred to as anorexia.  But keep observing for a few days, or at most a few weeks. You are likely to be challenged by other family members (“over-reacting”) and professionals, and you need to make your case, or at least have your data lined up. Trust your instincts, but do your data gathering with an open mind.

   6. Assess behaviors:  concerning behaviors might be

• • a dramatic uptick in exercise.  Never mind why (“I want to get fit” “I want to join the track team”  “all my friends do it” etc.) just move this behavior to the “high index of suspicion” category, in this context.
  • eating alone or refusing to come to the table at home
  • melt-downs when required to eat in a restaurant or public place
  • running to the bathroom after every meal
  • new-found interest in food, cooking (for others), reading recipes, watching cooking shows, downloading food apps, etc.  Very young children may not do this, but they might get unusually interested in what others are eating, quizzing them about their meals.

7. Interview their friends.  Like all of us, kids will often tell their friends more than their parents.  And peers may have astonishing insight into what is going on.  More than one parent has learned of eating disorder behavior from their child’s friends… or the school counselor has. So ask around.

8. Watch for body image concerns, but please be aware that these can be completely absent, especially in the very young child.  The diagnosis of anorexia nervosa is fairly easy when a child presents with the “adult form” of the illness, complaining that they are too fat even when not, and avoiding food because they are afraid to gain weight.  But a very young child may not offer any explanation for why they won’t eat.  They might just cry and be sad when presented with food. They might just come up with one excuse after another for “not being hungry”. The new DSM-5 addresses this, and while you don’t need the DSM-5 to make your diagnosis, if you get push-back from your provider, therapist or dietician about your concerns for an eating disorder, make sure they are familiar with the new definitions.  Don’t accept outdated information and attitudes from any professional.

9. Assess mood and social functioning.  Given that weight loss is considered an absolute triumph in our society at large, your child may be very happy if they are losing weight.  People may complement them… even doctors may do so.  In fact, especially doctors.  But eventually malnutrition will take its toll on mood and socialization. A formerly social child may become “too busy with homework” for their friends, more socially withdrawn, more irritable at home. If you see this in the setting of poor food intake or — worse — weight loss, you have essentially made the diagnosis.  Now you will need to involve your doctor.

10. Present your written findings and observations to your child’s health care practitioner.  You will now need their help to order labs, not so much to make the diagnosis of an eating disorder, but to rule out rare medical conditions which can present with weight loss.  If you are lucky, your doctor, nurse practitioner or PA will know enough to relieve you of this responsibility (deciding which labs to order), but don’t count on it.  You need to ask for at least the following:

• • a urinalysis to rule out kidney problems or blood sugar problems which can cause wasting

• • a blood sugar level (type 1 diabetes can present with weight loss)
  • a sedimentation rate (if high, consider inflammatory conditions)
  • a complete blood count. There are, of course, other lab tests and vital signs which I cover in my book Give Food A Chance, but they have more to do with management than diagnosis, and today we are learning how to diagnose our children.  

Finally, and most crucially, if your provider completely blows off your concerns, find another provider!  Sometimes this means you may have to travel for treatment. But do not stand for outdated or discredited approaches to diagnosis and treatment.  If you have done your homework, so should your provider.  After all, it is your child who is at stake.

I hope this is of some help.