PRISONERS OF THE WHEELHOUSE

(Therapy and Medication)

When Violet and I met my current husband, we were about 8 months out of being with my ex, who completely neglected her.  She hadn’t had a consistent, secure, stable male in her life – ever.  This man seemed so THAT.  He has huge muscles, he is like 6’3”, and he just makes you feel SAFE.  Violet was about to turn 3.

Within a month, she wanted to call him Daddy.  It freaked us out a little bit but I also didn’t want to freak HER out, so we decided to go talk about how to best navigate this “stepparent intro phase.”  That was the first time Violet went to a therapist.

For the next 6 years, as her issues began to present themselves, we shuffled through offices and alternative courses of treatment.  She was a kid who couldn’t really control herself.  She would get very upset when it wasn’t called for, seemed to have an irritability issue and always took things in a negative way.  She would be disrespectful, had an impulse control problem, struggled with focusing and processing.

She “left” (note quotes) the swank school and we placed her in a special needs school.  Finding a school in NYC that takes children with emotional issues is a challenge to say the least.  Because this, along with the DOE and attorney topic is SUCH A BEAR, I will place that entry in the resource tab – check it out for more help and detail.

We tried psychoanalysts, therapists, psychiatrists.  We went to 3 neurologists, one did the ambulatory 72 hour EEG.  We went to a cognitive behavioral therapy specialist.  We had someone shadow her at school and try to teach her techniques to better manage herself.  We tried exercise, less sugar, relaxation techniques.  

Aside from the financial imposition, it just wasn’t having the impact we had hoped for.  Everyone had always discussed medication and we were not into it.  The idea of medicating a kid seemed super counter-intuitive to me.  How could anyone know how it would effect the development of her brain?  She was at this point what – 6??? 

She seemed so unhappy.  It was really disrupting everything – school, family, friends.  We took her to Cornell Medical Center and asked that someone guide us through some trials.  Everyone convinced me that giving her a little “relief” would allow her to use all the therapy we were paying for in a much more effective way, so there we went  - on the MEDICINAL RIDE.  Yikes.

We tried what felt like everything, although with the number of drugs they manufacture, I am sure there are still some out there.  It was very very difficult.  She would have a bad reaction and then you had to endure weeks until it was out of her system and start all over again with something new.  We switched to a different psychopharmacologist, who was more of an order-taker and THAT was disturbing.  We went to NYU Child Study Center, who also loved medicating, but had a much more comprehensive approach.

She ended up on Abilify – an intense neuroleptic that they mainly use in adults.  When I even write this it sounds awful.  It seemed to really help her in the beginning.  It felt like it just turned the volume down in her head, took some of the edge off.  GREAT!

Then, like most meds, we discovered the effects started to fade for her.  The only answer from the doctors was to give her more.  Begrudgingly, we did.  She started to gain weight.  Her body mass increased, effects started to fade AGAIN and they told me she needed MORE.  So we upped her again

Now, I started to freak out.  I felt like we were prisoners.  She couldn’t take LESS, because then she was miserable and I didn’t want to give her MORE, because then when does it end???  It was totally scaring me. She gained about 45 lbs over the next year, as an 8 year old. Now add self-consciousness to an already sweet recipe.  Look – if she were large and felt good it wouldn’t have mattered to anyone.  But she felt awful and she was asking to stop.

We went on vacation for a month in the most conducive-to-good-vibes environment we could have found.  We weaned as slowly as I could imagine with the direction of a doctor.  We never got to NOTHING, but we were able to get to a very small dose.  This was not just a – “Hey! Just give her less it’s fine”- thing.  This was every day managing her moods and the withdrawals that came with it.  

She came with me to the grocery store one day.  I looked at her at the deli counter and she just looked like she was pulling at every thread she could to hold herself together.  There wasn’t one thing for her to be upset about.  No one was talking to her, no one was looking at her.  She was just on the verge of a breakdown.  I was witnessing a little girl, MY little girl, STRAINING with all her might to not cry. 

“Vi – hey – if you are miserable you tell me what you want to do.  If you want to go home and take the medicine again we can.  All you have to endure is 20 more minutes while we pay and leave.  I just want to help you, are you ok?”

“I would rather be fat than feel like this Mommy.”

Ugggggghhhhh.  That sentence still tortures me.  This kid was 8 years old.  I don’t care about big or small.  It was just an indication as to how she actually felt.  She ALSO felt terrible about herself physically.  Yet, she was willing to forego that, to feel slightly better inside and that just broke my heart.  Killed me. 

So we took it.  And it never really helped her again.  And I never knew how the hell to get her off.  Wheelhouse of medicine.  We were prisoners of the wheelhouse.

I am not anti-medication.  I have taken medication for anxiety and depression in my life and it helped.  Helped me pull myself out of the hole, do things that would really be helpful like exercise then I weaned and still felt great.  I am unclear as to where I land with the ‘children on meds’ portion of this.  Clearly, they can be helpful.  I waffle between what is best for the kid in the long run versus what makes it easier for everyone to deal with the kid now.  Learning coping skills?  Better.  But maybe some kids need more accessibility to be receptive to tools? 

Violet is now 12.  She has gone through a Wilderness Program and is at a therapeutic residential school.  Over a period of 8 months with tons of therapeutic help, they have helped her wean.  She is officially off her Abilify.  She sounds happier and more like herself than I have heard her in 5 years.  It isn’t just the meds, she has been through a HUGE experience.  But, makes you wonder, no?

STAY TUNED for the Wilderness one – holy cow.

 

 

Some more fascinating reading material –

  1. http://www.huffingtonpost.com/dr-peter-breggin/children-antipsychotics_b_1771152.html
  2. http://www.capmh.com/content/2/1/5/ 
  3. http://www.madinamerica.com/2013/12/neuroleptics-children-harvards-shame/
  4. http://childpsychiatry.thehastingscenter.org/report/introduction/