Kartini Clinic for Children and Families

Pediatric Eating Disorder Treatment Program

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    • ARFID
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      • Inpatient
      • Partial Hospitalization (PHP)
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      • Direct Referrals
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      • Julie O’Toole MD MPH
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Genetics of Brain Disorders

September 18, 2014 by Morgan O'Toole-Smith

Medicine is moving at the speed of light.  And that’s a good thing.  We have a long road ahead of us to move out of the pre-scientific eras, where no one required an evidence base to do most anything.  And we face an even longer road to shed the paternalistic roots of “doctor knows best” (not to mention parent blaming for brain disorders!).  But perhaps the longest road of all is the road that is now leading us to real “individualized” or “personalized” medicine.

Actually, I prefer the term “personalized medicine” because it says the same thing as “individualized medicine”, without forgetting that we are persons.  And as persons, we are psyche and soma: spirit and flesh, so to speak, even where “spirit” may be closer to “neural connections” than to “ghost”. We have thoughts and feelings which, even if all thoughts have a neural basis in our physical brain, are as important—or more important—than our hemoglobin, our cholesterol profile or our IQ.

Genetic testing—the scientific core of personalized medicine—offers us the hope of tailoring medical recommendations to our own biology.  Am I someone who should avoid salt? Am I someone who will have cardiac complications with non-steroidal anti-inflammatory medication?  Can I/should I take Prozac? Do I need a yearly mammogram?

I am blogging about genetic testing again as I think this is going to evolve rapidly from something used in only a few forward leaning practices to something being used in everyone’s practice, and sooner than you think.  And, really, how could it not?  I am certainly not going to allow myself to be prescribed any medication for which there is known, evidence-based, testing regarding efficacy and safety for people who carry the gene mix I do.  I want testing based on my genetic make-up, not pooled evidence from 10,000 of my closest middle-aged +, Caucasian, female, cohort-mates.

I think, however, as we examine which variations each of us carries in regards to the metabolism of psychotropic (brain-affecting) medications, we may learn more than we bargained for.

For example, I come from an Irish American family.  Alcoholism runs notoriously in families of Irish descent, just as it seems to run in Native American families.  I have spent lots of time thinking about this issue (familial alcoholism) as it affects many of those whom I love, actually or just potentially.  As a young person I observed that my father’s generation on his own father’s side (the Irish side) were about half severely affected and the rest moderately to mildly affected.  There appears to have been a “wash-out” effect in subsequent generations as “outbreeding” diluted the original gene pool, even though there are still affected family members: about ¼ severely, ¼ not at all and ½ mildly.  It was clear to me as a child that “who received the alcoholism gene(s)” was not dependent on “who was a good person”.  Even though, notoriously, alcohol abuse will ultimately destroy a person’s relationships, ability to work, brain functioning and health, the people who are affected are still wonderful people.  My favorite uncle was so affected. And although his wife stood by him in his illness and he eventually became sober, it was far too late to prevent the tale of woe that had dominated the lives of my cousins.

I guess what I am trying to say is that I suspect we will find out – have reinforced – the fact that alcoholism and drug abuse are brain disorders and disorders of metabolic processing of substances, not the character flaws they appear to be.

When I looked at the results of a young man whose heritage was half Lakota/Sioux and whose parents’ lives (both of them) had been destroyed by opiate and meth abuse in one and alcohol abuse in the other, and I listened to the young man himself tell me how he had struggled to come off of every psychotropic medication he had ever been prescribed, and experienced little help from them and then I saw the results of his gene testing which predicted this very thing; I was awestruck.

We are standing on the verge of something very big, folks. And in many ways, it’s high time.

Filed Under: Uncategorized

The Long Silence

August 19, 2011 by Morgan O'Toole-Smith

Occasionally we invite guest bloggers to write about their experiences in the field. Steve Nemirow has been, among many things, a intake co-ordinator at Kartini Clinic for many years, and has talked to hundreds of families about their struggles to find proper eating disorder treatment for their children. This is one of those conversations.

Life on the Fracture

Recently I was on the phone with a young father from a southwestern state, whose 8 y. o. son was refusing to eat any solid foods, after he choked on vomit during a bout of ”flu.”  This conversation presents a problem I can’t fix.  This happens in the world of childhood eating disorders, more often than anyone wants to talk about. I imagine the problem could be fixed, but that will only happen once a voting majority decides that childhood illnesses belong to all of us, and where children are involved, health problems are never “somebody else’s responsibility.”

The father had taken his son to a major medical center where a standard battery of medical tests all came up negative.  Still, the boy wouldn’t, couldn’t eat. He was losing weight. He wanted to eat.  They took him to an ear/nose/throat specialist. They took him to a speech pathologist.  A swallowing specialist.  The boy couldn’t eat. He kept losing weight, despite his parents’ best efforts to keep his weight up using Boost and smoothies and milkshakes. He dropped from 63 lbs to 52 lbs.  Then his father found our website on the internet.

After speaking at length with the father about the onset of symptoms, I offered him my non-expert opinion (preceded by the usual caveats that (1) I am not a medical doctor, (2) this is not a diagnosis but only a conversation, and (3) to get a real diagnosis it will be necessary for one of our doctors to examine the patient, take some time doing so, and meet with his parents): I said, it sounds like your son may have food phobia.  

“That’s what I think.” Said the father. “I knew it as soon as I read your website. It was like you already knew my boy, knew what happened to him.”

“If that’s what he has, I believe we can help.”

“I’m glad to hear it, you’re the first place I’ve talked to that says they think they can help.”

The question, I said, is going to be resources.  There was quiet on the line.
“Health insurance,” I said.

“I got laid off in January.”

“Any COBRA coverage?”

“COBRA shit its 1,300 a month.  That’s more than my unemployment. What’s so expensive?”

“It’s the hospital. Its about $3,500 a day.  Plan on a couple weeks’ stay.  It could be shorter or longer, but a couple weeks is a good planning number.”

The long silence.

“You know how the President says our health system’s broken?” I asked him.
More silence.

“You’re right on the fracture.”

After more silence he said softly, “That’s like 49,000 dollars. And then there’s the airplane tickets.  You tell me how I’m supposed to do that.”  I could hear his breathing.

“You tell me why a boy’s not going to be treated because his father’s been laid off and can’t find work,”  he said.  “My boy didn’t do anything wrong.”

Filed Under: Eating Disorder Treatment, Food Phobia

5 Things to Look for in an Eating Disorder Program

July 16, 2011 by Morgan O'Toole-Smith

As Dr. O’Toole is away this week, I thought I would try to fill her rather roomy shoes and take a stab at this week’s blog. As CEO I’m often asked by parents and providers: what makes a good eating disorder treatment program? What specific criteria should one use to compare programs? What questions should one be asking?

And you won’t be asking these questions only of prospective treatment programs. These will come in handy talking to your insurance company, when they make the inevitable “in-network” treatment recommendation.

Firstly it’s important to remember that insurance companies make treatment recommendations based on commercial relationships with providers (i.e. network contracts). These have zilch to do with appropriate treatment for your child. That’s not to say they couldn’t make an appropriate recommendation. They might; then again they might not, and it falls to you, as parents, to make the right choice based on what really matters: the health and welfare of your child.

And contrary to popular belief, you don’t actually have to take their treatment recommendation(s). You have options.

Secondly, insurance companies are always at pains to stress they never make medical decisions. Oh no, that’s strictly between you and your doctor. Well fine, in that case you and your doctor will determine if their treatment recommendations are appropriate. If you (parents) think they aren’t  – and even if your doctor doesn’t agree with you – be prepared to fight. You should know that insurance companies are legally obligated to furnish “appropriate” treatment options within 50 miles of your home or pay in-network reimbursement rates (i.e. higher rates)  for you to see an appropriate specialist, even if that specialist is not contracted with your insurer and/or is located far away (i.e. out of state). This is called an out of network exception, four words you are unlikely ever to hear uttered by an insurance company representative.

So then, what does an appropriate treatment program look like? Since Kartini Clinic is a pediatric eating disorder program specializing in children and young adults, particularly those under 12, we have strong opinions about the proper qualities of a program for this age group. The following are five questions to ask.

(1) Is the program truly a program for children or merely an adult program that treats kids?

This might sound obvious but too often I hear insurance companies insisting that an adult program should be able to treat a 15 year old (never mind a 12 year old). Nonsense. Children and young adults need a program tailored specifically to their needs, and not just one where the “adolescent treatment group” is staffed by providers who are really trained to treat adults.

(2) Does the program bill itself as a “dual diagnosis” program?

There are a lot of programs out there that say they treat children with eating disorders, but in fact they will treat anyone who will will pay their fees. Sorry, but it’s true. We are very skeptical of places that purport to be “experts” in such disparate and unrelated fields as eating disorders, substance abuse, behavioral issues, and developmental disorders. And all this with a single treatment team?! Chances are very good your child will be in the same treatment group as children who have wildly different diagnoses and treatment needs. That’s not appropriate care, in our professional opinion.

(3) Does the treatment team include a medical doctor with expertise in eating disorders?

In our opinion, any treatment team must contain at least one board certified pediatrician and/or pediatric psychiatrist, as well as therapists with specific training in the treatment of eating disorders in children. Don’t be shy about asking for this up front, and don’t be put off with platitudes and excuses. Remember: board certified pediatricians or pediatric psychiatrists. Period. And if these medical doctors don’t supervise your child’s condition daily, move on. There are programs who do, and they’re almost certainly going to be better for your child.

(4) Is there continuity of care?

Eating disorder treatment is complicated. It necessarily involves both expert medical and mental health providers. A good eating disorder program will have the same team of providers working together at all stages of care, whether inpatient, day treatment or outpatient. In other words you don’t want a different doctor or therapist for your child at each stage of treatment. And you don’t want a program that does one phase but not the next, i.e. provides inpatient but not day treatment, or day treatment but not outpatient. This just ensures you’ll have to start all over again with yet another group of providers who don’t know you or your child (or worse, give conflicting advice). Insist on a program that will see your child’s care through from the very first appointment to the last.

(5) Does the program place families at the core of the treatment team?

We are very heartened to hear how everyone now does “family-based treatment”. We’ve been doing it since 1998. And though all the brochures are certain to mention it, the fact is there’s family-based treatment and then there’s family-based treatment. Once a week conference calls with a family member is not family based treatment, in our opinion. True family-based treatment begins by placing the family at the core of the treatment team, not relegating them to the periphery. That means face-to-face family therapy at least weekly with all parents, if possible. It also means parent instruction and training on things like preparing appropriate meals for their child. After all, every child must eventually return home, to be cared for by parents who will need an in-depth understanding of proper treatment for their child. Without this there is little hope of lasting remission. And family-based therapy is not just nice to have, it’s been shown to be more effective in treating children and young adults with eating disorders than anything else out there. Be sure to insist on a program that doesn’t just pay lip service to family-based treatment but really practices it too.

I hope parents find this information helpful when discussing eating disorder treatment options with their insurance company or when looking into programs in their area. Just remember, you may have to insist on the right program for your child. But in order to do that you’ll first have to know what the right program should look like.

Filed Under: Eating Disorders, General

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  • Eating Disorder Treatment
    • Anorexia Nervosa
      • Signs & Symptoms: Anorexia
      • Causes and Triggers: Anorexia
      • Treatment: Anorexia
    • Bulimia Nervosa
      • Signs & Symptoms: Bulimia
      • Causes and Triggers: Bulimia
      • Treatment: Bulimia
    • Food Phobia
      • Signs & Symptoms: Food Phobia
      • Causes and Triggers: Food Phobia
      • Treatment: Food Phobia
    • ARFID
    • Treatment Overview
      • Inpatient
      • Partial Hospitalization (PHP)
      • Intensive Outpatient (IOP)
      • Outpatient
      • Cost of Treatment
  • Eating Disorder Resources
    • For Referring Providers
      • Hospitalization Criteria
      • Direct Referrals
    • For Parents & Guardians
      • Top Tips for Parents
      • Understanding Your Insurance
      • Talking to Your Employer
      • Insurance FAQ
      • Mental Health Parity Law
      • Family Housing Information
      • School During Treatment
      • Give Food a Chance
    • Kartini School
    • Research & Resources
    • Treatment Videos
    • Glossary of Eating Disorder Terms
  • About Kartini Clinic
    • Why Kartini is Different
    • Will Treatment Work?
    • Our Staff
    • Contact Us
    • Careers at Kartini

The Kartini Clinic Difference

At Kartini Clinic we practice only evidence-based, family-centered eating disorder treatment. Our program is a multi-disciplinary medical and psychiatric treatment model rather than an exclusively psychiatric approach to eating disorder treatment.  read more »

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