First Person: Fighting Sophie's OCD Was a Family Affair

First it was certain words that upset 7-year-old Sophie. Then many words—so many that the family couldn’t keep up. And sounds. “You could barely breathe,” said Sophie’s mother, Laura. “You couldn’t yawn.”  Laura talks about the treatment that helped Sophie get better.

When she was in the threes and fours and preschool, I would have to pack lunch.  The teachers would say she spent more time setting up her napkin and her juice box and her lunch than eating.  And I would jokingly say, it’s as if she has OCD!

When she was in kindergarten, she was struggling with her reading.  By the middle of first grade, I knew something just wasn’t right.  So we pursued a neuropsych evaluation.  And the findings were that she had significant anxiety and perfectionist tendencies.  When she would do her homework, or when she would be writing, if the letter wasn’t formed properly, it was erased.  So there were holes in the paper.  We started with a reading specialist, and by the end of first grade, her reading blossomed.  By second grade she was reading at higher grade levels and her understanding was really very insightful.  So she progressed academically.

About three summers ago, I started to notice that she was in the bathroom for much longer periods of time.  And that we were going through bottles of hand soap.  And the paper towels.  And as that happened, I just knew.

I talked to the pediatrician, and she recommended a child psychiatrist.  And the psychiatrist again agreed that there was a significant level of generalized anxiety as well as some bouts with depression.  She said it was on the spectrum of OCD, but let’s not call it that.  We had a lot, a significant amount of loss in the family.  Of family members who she and I were very close to.  And so Sophie really became like obsessed on illness and death.

Sophie was doing some cognitive behavioral therapy, and we tried an antidepressant for a period of time.  And Sophie had some kind of response and then plateaued.  And then we increased the dose and it just wasn’t right.  And we tried something else and she got very agitated. She would vacillate between periods of being very anxious and hyper-agitated or very sleepy, and she wasn’t functioning.  So it was really now taking a toll.

“So she would bottle it up at school, and then basically come off the bus at home and just explode.  Physically and verbally she was very upset.”

Things began to escalate.  At first only a few words bothered her — like “beautiful” and “gorgeous.”  If someone said one of them, she would demand that you say, “sorry.”  Then it got to be so many words we couldn’t even keep up.  And then sounds.

Like the “shh” sound — she really couldn’t tolerate it.  If someone said “shh,” I mean in school, she would rock herself, she would doodle on a sticky pad, and really, the way the doctor initially explained it to me, it was like nails on a chalkboard to her.  She started having stomachaches; she was spending a lot of time at the nurse.

So she would bottle it up at school, and then basically come off the bus at home and just explode.  Physically and verbally she was very upset.  And it became not only the words, it became the noises, it became not only the word “kiss” but the kissing sound.  So if my husband would leave for work or go to say goodnight to someone and give a kiss, that just—she decompensated.  You couldn’t rub — It was both seeing it and the sound that went with it.  And crossing — she couldn’t tolerate my crossing my legs.  She would literally ask me to change my pants if it was like cotton and she could hear it.  I wasn’t allowed to hold the banister because of the sound of my hand rubbing down the banister.

You could barely breathe — you couldn’t yawn.  She could be upstairs and she could hear my husband yawn down here and she was down like a bat out of hell.  If we were in a car like she would be literally kicking the back of my seat or pulling my hair if I yawned or said a word inadvertently.  So it really took on a life of its own.

“You couldn’t just close a door; the door had to be shut over and over until you did it a certain way, a certain loudness.  Our house was falling down at points.”

Yes.  My father was diagnosed with pancreatic cancer, and he’s a huge part of our life, and Sophie is exceptionally close with him.  Emotionally it took a huge, huge toll on Sophie.  She knew something was wrong with my father, she knew he had surgery, she knew he was having special treatments, but it became like another kind of another obsession.  You know, worrying.  Everything was happening at once, and she wasn’t responding to the medications.  So finally, in the spring, I said, let’s take her off everything.  Let’s go back to baseline, and then reevaluate.  So we took her off of everything.  And it was like, just out there.  I mean she just couldn’t cope.

And that’s when we referred to Dr. Jerry Bubrick for intensive treatment.

We started seeing Jerry and Brady Case—Brady prescribes the medication.  We tried a couple medications and it wasn’t so easy until we found the right one, a mood stabilizer.  And then once her mood was stabilized—she had kind of a gradual reaction, but it took that component for Jerry, for the intensity of his exposure therapy, to take effect.  Because in the beginning, she stormed out, she could not stay in the room.  And her compulsions were like, you couldn’t just close a door; the door had to be shut over and over until you did it a certain way, a certain loudness.  Our house was falling down at points.  And when, if someone said, you know, “beautiful,” she would demand a “sorry.”  It had to be exactly how she needed to hear it.  So I, we were living—you know, sorry, sorry, sorry, sorry, sorry—we were at her mercy.

And finally you know, when the mood stabilizer really reached the right dosage, and she started doing the work, and started developing a much better relationship with Jerry, we were able to add on an antidepressant, which has also been shown to be helpful to children with OCD.

In the beginning when she was going to see Jerry, she would come home and say, “You know what, he hurts my feelings.”  And he explained to us that in order to really break down her OCD he couldn’t allow her symptoms in his office during sessions.  Otherwise nothing would change.  So, as a child, she perceived it like, he was hurting her feelings.

And then Jerry’s mother passed away.  And Sophie knew what it felt like, you know, to have a loss.  And she felt so terrible, she couldn’t wait for him to come back because she baked him cookies. And then they developed a much more mutually fulfilling relationship.  I think she got to trust him and it was, you know, I described it as tough love.

“He was very confident because he has the experience.  It’s practice-based, evidence-based.  So we trusted him from the get-go.  And I basically said to him, all of our eggs are in your basket.  We need her better.”

He met with David and I, and he met Sophie’s sister Rachel, and my parents.  And it was so helpful for my parents, who are very invested in her and in our lives.  To involve them in the process.  To tell them, “This is what you need to do.”  Sophie was spending a weekend with my parents, and he had to explain to them how to respond.  If she said, “Say sorry,” instead say, “Sophie, we’re on your team, we are going to help you.  You can get through this.  We are not going to keep saying sorry.”

She was resistant at first.  In the first few weeks we weren’t getting the right medication and she really wasn’t responding, so it was terrifying.  He was very confident because he has the experience.  It’s practice-based, evidence-based.  So we trusted him from the get-go.  And I basically said to him, all of our eggs are in your basket.  We need her better.

And then she started.  It was like one word.  Some days were better sessions than others, but they were able to kind of like tolerate each other and the toughness.  We would always go in together and kind of fill Jerry in on what had transpired since the last time, and then he would explain what they were going to work on, and then they would have the bulk of the session on their own.  When she had a good session, you know, you could see it.  She would come out and, you know, skipping down the street happy.

We had assignments.  When they worked on the word “cream,”  we had to go to a supermarket and buy every item we could find with “cream”:  whipped cream, sour cream, heavy cream, cream cheese.  And then the next morning I would say, Sophie do you want butter on your bagel or cream cheese, and she would totally decompensate: “Why did you say it?”

The hardest thing was not saying “sorry.”  That’s what we had to not do.  And she would demand a sorry, and she still does.  But now we’re able to say, “Sophie, do you need the sorry?  Because you know if we say sorry it’s just making Leaf stronger.”

She’s made tremendous progress.  We had gotten to that point where it took over our lives.  I didn’t know what to do besides scream, because I couldn’t fix it.  Now I’m a lot calmer, and she’s much better.  She had a very successful start in school this year.

And we have a new addition to our family—a Cavapoo named Brady.  You see, the first session, maybe the second session, Sophie had with Jerry, he asked her, “If you could beat this OCD, if you could overcome and control and manage it, what would be your greatest reward?”  She said, “I really want a puppy.”

To Sophie’s great surprise and delight, her puppy joined our family this past Sunday.  The puppy is so sweet and truly a testament to the tremendous efforts Sophie made to get better.