The Longest Follow-up Post Ever

I’ve received a lot of questions in regards to the post I wrote about my son being diagnosed with OCD. Three questions stand out, though. Three questions flooded my inbox, over and over again. Three questions that people really wanted me to answer. I don’t know how well I can answer them, but I can give it a shot.

How did you know something was wrong? What are the signs of OCD?

K was always a particular child who preferred to be clean and refused to eat junk food (in other words, he’s a health nut, and may not be our child), so when the symptoms first started I attributed it to teenage weirdness; the dramatic increase in hygiene and appearance that many teens experience. Over the course of the summer though, my inner dialogue went from “Hmmm” to “Huh” to “Wow” to “This isn’t right” to “Oh, HELL no”. His symptoms escalated, in other words.

J was a hard sell. I have an undergrad degree in psychology, so I think I was more open to a diagnosis. Finally, after going back and forth about our concerns for a couple of weeks, I found a list of symptoms of OCD in teens which I printed off and read to him. J was flabbergasted at first; in fact, he accused me of writing it myself instead of printing it off of a website.  Within a few moments reality began to set in. There was, in fact, something serious going on with our child.

Given that we all have our quirks, and invariably something on the long list below will be something you (or our child) do(es), I’d like to point out that the number of items you (or your child) do(es) is how you know if you have OCD or not. Doing two of these things doesn’t mean you have OCD. Our son meets thirty-three of the categories listed below.

Those categories are:

Cleaning/Washing OCD Symptoms

    Excessive or ritualized hand washing

    Excessive or ritualized showering, bathing, tooth brushing, grooming, or toilet routine

    Involves cleaning of household items or other inanimate objects

    Other measures to prevent or remove contact with contaminants

Checking Symptoms of OCD

    Checking locks, stove, appliances etc.

    Checking that did not/will not harm others

    Checking that did not/will not harm self

    Checking that nothing terrible did/will happen

    Checking that did not make mistake

    Checking tied to somatic obsessions

Repeating Rituals

    Rereading or rewriting

    Need to repeat routine activities (in/out door, up/down from chair)

Counting Compulsions

Ordering/Arranging Compulsions

Hoarding/Collecting Compulsions

Miscellaneous OCD Symptoms

    Mental rituals (other than checking/counting)

    Excessive listmaking

    Need to tell, ask, or confess

    Need to touch, tap, or rub

    Rituals involving blinking or staring

    Measures (not checking) to prevent: harm to self, harm to others, terrible consequences

    Ritualized eating behaviors

    Superstitious behaviors

    Trichotillomania (hair pulling)

    Other self-damaging or self-mutilating behaviors

Somatic Symptoms of OCD

    Concern with illness or disease

    Excessive concern with body part or aspect of appearance (eg., dysmorphophobia)

Aggressive OCD Symptoms

    Fear might harm self

    Fear might harm others

    Violent or horrific images

    Fear of blurting out obscenities or insults

    Fear of doing something else embarrassing

    Fear will act on unwanted impulses (e.g., fear of stabbing a friend or loved one)

    Fear will steal things

    Fear will harm others because not careful enough (e.g. hit/run motor vehicle accident)

    Fear will be responsible for something else terrible happening (e.g., fire, burglary)

Sexual Symptoms of OCD

    Forbidden or perverse sexual thoughts, images, or impulses

    Content involves children or incest

    Content involves homosexuality

    Sexual behavior towards others (Aggressive)

Hoarding/Saving Obsessions

Religious Obsessions & Scrupulosity

    Concerned with sacrilege and blasphemy

    Excess concern with right/wrong, morality

Obsession with a Need for Symmetry or Exactness

    Accompanied by magical thinking (e.g., concerned that another will have accident unless things are in the right place)

    Not accompanied by magical thinking

Miscellaneous Obsessions

    Need to know or remember

    Fear of saying certain things

    Fear of not saying just the right thing

    Fear of losing things

    Intrusive (nonviolent) images

    Intrusive nonsense sounds, words, or music

    Bothered by certain sounds/noises

    Lucky/unlucky numbers

    Colors with special significance

    Superstitious fears

Contamination Obsessions in OCD

    Concerns or disgust with with bodily waste or secretions (e.g., urine, feces, saliva)

    Concern with dirt or germs

    Excessive concern with environmental contaminants (e.g. asbestos, radiation toxic waste)

    Excessive concern with household items (e.g., cleansers solvents)

    Excessive concern with animals (e.g., insects)

    Bothered by sticky substances or residues

    Concerned will get ill because of contaminant

    Concerned will get others ill by spreading contaminant

    No concern with consequences of contamination other than how it might feel

     
Goodman, W.K., Price, L.H., Rasmussen, S.A. et al.: “The Yale-Brown Obsessive Compulsive Scale.” Arch Gen Psychiatry 46:1006-1011,1989.

What are you doing for your son? What does treatment involve?

I talked a little bit about this in the previous post, but let me expand on it a bit. OCD needs two types of treatment to occur at the same time. Doing both at the same time for a period of about two years will significantly reduce or eliminate daily symptoms in about 80% of sufferers.

The first one is medication-- SSRIs (Selective Serotonin Reuptake Inhibitors) to be specific. The brain can experience a low level of serotonin available for the nerve cells to pick up and use to transmit messages, and bad things can result—like depression, anxiety, and OCD. You may know SSRIs as new generation antidepressants (Zoloft, for instance). In fact, Zoloft, I’ve been told, is the only drug the FDA has approved to treat both depression and OCD in kids and teens. While a person with depression may take 50 mg of Zoloft each day to effectively treat depression, a person with OCD will likely need two to four times that recommended dosage. This means people with OCD will likely start with a low dose (50mg) and slowly work their way up to 200mg each day. Zoloft (any antidepressant, for that matter) has side effects. Do not read about the side effects on Dr. Google. People put scary (and sometimes inaccurate) shit on the web. Rely on your doctor and your pharmacist to tell you about and explain the side effects.

The second treatment is Cognitive Behavioral Therapy. This is different than the way we usually think of therapy (“Lay on the couch and tell me about your mother…”). CBT wants to limit the sessions and maximize results. It focuses on training your thoughts and your behaviors. CBT goes through phases with OCD:

1)     Assessment of symptoms

2)     Education about OCD

3)     Skills-training (coping mechanisms)

4)     Skills-practice (also known as desensitization or exposure)

5)     Maintenance and avoiding triggers

6)     Follow-up

The interaction between the two treatments (getting the levels of serotonin in the brain up to where they need to be and learning the skills needed to deal with the obsessive thoughts and compulsions) is imperative, and something that many OCD sufferers will deal with for the majority of their lives. Because someone with OCD is receiving a lot of treatment, you can also expect to have a lot of providers. Case in point, we are currently working with the pediatrician, psychiatrist and psychologist. K’s joke is that we just need to add a priest and our set will be complete.

How can you be so positive about all of this? Why are you making jokes?

We’ve taken the approach of ‘I could laugh or I could cry, and I look ugly when I cry’ in our household. We are, in some ways, making light of some pretty heavy stuff going on right now. I don’t want anyone to think we’re not taking things seriously—because we are. Sometimes, though, you just have to laugh. Sometimes, you just have to make a joke. And I’d much rather see my kid making jokes about this than crying. So when he comes home from an appointment and J asks him how it went, and K quips off, “Not great. Still crazy!”, or if K asks us if adding a priest to his complement would mean he could get exorcisms on demand, we laugh, but we mean no disrespect to anyone who struggles with mental health concerns. We’re just dealing with it the way we know how, and we hope that everyone finds the best way, for them, to deal with their own.