Trichotillomania and Amino Acid Therapy

Three months into my daughter's hair pulling, I had become an avid reader on anxiety disorders, OCD, Tics, Nail biting, skin picking and hair pulling.  A reading list not for the faint of heart. I worked daily to keep my own anxiety in check and manage the response to my daughter's condition.  The professional guidance was, " if you want the pulling to continue, talk about it".  It was the most counter intuitive thing in the world to see your daughter pull her hair and not talk about it with her. Don't ask why she pulled, how she felt when she pulled, where she was when she pulled.   All of these questions are apparently bad for parents to ask as it brings attention to the condition and therefore focus on the activity.  Some days I was better then others.  Some days I would see the new spot, go into the bathroom cry, scream in the towel, curse, and come out with a quite calm covering the storm inside.  Other days, I would lose it and ask her why she won't just stop, why does she do that to herself etc.  Those were the worse days because she felt worse as did I.  

As I worked my way through all the parental advice and ambiguous medical information, I came upon a blog that was discussing the use of amino acid therapy in the treatment of trichotillomania. The premise was that it was a neurotransmitter imbalance that was creating an uncontrollable urge to pull resulting in both baldness as well as mood disorders.  The treatment was a fairly aggressive dosage several times a day of amino acid vitamins that over time rebalance the neurotransmitters in the brain.  A neurotransmitter is a chemical messenger that carries, boosts, and balances signals between neurons, or nerve cells, and other cells in the body.  These chemical messengers can affect a wide variety of both physical and psychological functions including heart rate, sleep, appetite, mood and fear.  Billions of neurotransmitter molecules work constantly to keep our brains functioning, managing everything from our breathing and heartbeat to our learning and concentration levels.

Within one week of taking the amino acids, we noticed a different in her mood. There were no tantrums, she seemed in a better mood and while the pulling seemed to continue it wasn't as explosive as it had been.  The second week was even more improvement in the mood and by week three we noticed that there had been no urge to pull. She reported feeling better and was relieved that she had not had the urge to pull her hair.That was three months ago.  I was so relieved that the hair pulling had stopped and really felt like we dodged a bullet.  Somehow she had developed an imbalance and now through the amino acids we were finding our way back to balance.

This month, as part of the amino acid therapy we took a urine test to measure the neurotransmitter levels- serotonin and dopamine being the predominant measures.  Her serotonin levels were off the charts high ( because she had been supplementing for 3 months) but her dopamine levels were relatively low.  The doctor decided that she needed to increase her dopamine supplements and decrease her serotonin.  The first couple weeks I didn't notice anything because honestly, I thought we were out of the woods.  Gradually, however, I started noticing that her mood was more anxious, she wasn't sleeping or eating as well, and that a new little spot had emerged on her head.  My heart sank, called the doctor and his suggestion was that we increase the dopamine as he thought that she needed more of it.  We discussed why the imbalance could be creating the condition and agreed that we would give increasing the dosage a try.  Within days, it was noticeably worse, her pulling had increased and she was not able to sleep. I discontinued the dosage and notified the doctor we would be resuming our old dosage.

That brings us to today. She was weeks away from not needing a headband to leave the house for the first time in months, and this morning in the rush to complete a school project she pulled another chunk of hair creating a significant hole in her bangs.  The rage I felt inside was palpable. Instead of comforting my daughter, all I could say  was"you are stronger then this- make another choice".  Thinking that she was upstairs I swore cursing the huge hole in her hair and the months ahead of headbands.  She heard me and my ravings and felt even worse about having pulled her hair.  I did everything I wasn't supposed to do. I asked her about it, I showed my own fear about her condition, and basically made her wrong for pulling her hair.

This experience prompted me to start this blog. My daughter is my only child, and while I have nothing to compare it to, I have to believe that this is one of the most challenging things for parents to endure.  It is for all of us that I create what will hopefully be a forum for us to communicate and share solutions and experiences of managing this condition.

One Day at a Time

That little pulling turned into more quiet time in the bathroom, resulting in more red spots that ultimately started moving her hairline back.  My daughter is now nine years old and has been dealing with hair pulling for nine months.  At its worse, she would pull out full clumps of hair essentially giving herself a mohawk. Day after day, I was stunned as I found hair littered throughout her room and ordered wider and wider headbands to cover the bald spots.  While the initial pulling seemed sporadic, it grew to be pretty consistent and embedded in fits of rage and huge mood swings. I was terrified. I no longer recognized my girl both physically and emotionally. What was happening?

 I felt completely overwhelmed. I had moved to spend the summer with family in the hopes that a change of scene with her favorite people might make things better, but it just kept getting worse.  While my family meant well, there was a pervasive feeling that they would be doing it differently.  My mother, fortunately, was the one that saw it all first hand and understood that this was a parenting challenge she had never encountered in raising her four children.   By month three, she had pulled 75% of her crown hair and there was no sign of it easing up. We had started seeing a therapist who was helping us track what prompted the pulling and how she felt, but at the rate we were going, she would be bald before any significant change was going to occur.  I felt certain I was missing something, it just didn't feel right.

I started researching every night after I put her to sleep. The stories were horrifying.  I would read medical journals that described the condition as a psychiatric disorder linked to OCD and anxiety.  There was very little information other then the prescription medicines that were prescribed for the disorder and many accounts indicating that they had very little impact on the hair pulling behavior.   I read stories from adults who had suffered from this condition for their entire life and a few teens who would give pretty graphic descriptions of their pulling habits, locations, feelings etc.   For hours, I was bombarded by pictures of bald spots, shaved heads, head bands, wigs, painted eye brows, and beanies all describing these heart wrenching conditions that profoundly impacted families and lives.  At the same time, I found a Facebook page of parents dealing with this condition and heard over and over again that we just needed to accept this as the new normal.  Hair was not important, our society over rated hair as beauty and we just needed to love our children no matter what. The level of despair I felt is indescribable.  Of course, I would love my daughter with or without hair but no way was I ready to accept her condition as the new normal. 

Fortunately, as is often the case, hope was right around the corner

The Journey Towards Hairpulling Begins

People have asked me when I first noticed that my daughter pulling her hair. The following is the story that I share. 

March was a crazy month. Lila was in full swing in her 3^rd grade year and struggling with some girl drama at school.  She was very stressed by the power struggles among her friends and was coming home crying quite often.  I was in the process of trying to finalize a contracting agreement and launch a big technology initiative with multiple organizations in the state.  I was preparing for a conference the first week of April which would then be followed by my 50^th birthday and Lila’s 9^th birthday.  My birthday celebration was a trip to Mazatlan Mexico with a few close girlfriends.  We were both excited about our celebration month and there were lots of talks of planning. 

One day as Lila was getting ready for bed, she began her usual download of the days challenges and noteworthy events.  Her voice was filled with emotion and excitement.   She was describing how the little girl in school, who she repeatedly had problems with, was teasing her about a small mole that she had at her hair line.  She was in the bathroom and I was in the kitchen listening trying to keep calm and not get frustrated at this little girl harassing my daughter and Lila continuing to be drawn to her like a moth to a flame.  As I am working in the kitchen and feeding the dogs, I realized that Lila had been very quiet in the bathroom for several minutes.  I stuck my head in to see what she was doing and saw her staring closely at herself in the mirror.  She was looking at her mole that she had now made very red.  I didn’t notice it right away but as I looked closer I realized that she had pulled the hair around the mole out entirely leaving a splotchy area on her forehead and making the mole even more noticeable.  She was upset as she realized that her picking it did not make it disappear.  I pulled her hands away from her forehead and told her that it picking a mole, and anything for that matter was always going to make it worse.   My little speech had become a mantra with Lila as for as long as I could remember she had the tendency to scratch excessively at itches and pay very close attention to the little scratches, splotches, bumps and bruises.  “Let it be” I would always say. “Let your body heal it”.  “Its going to be fine”, “Scratching is going to make it worse” and on and on.  Lila was always disappointed that I didn’t share her fascination with her scratch, itch, blotch etc.  “You don’t care” she would declare. “You aren’t even helping me”, she would proclaim as I limited my attention to providing her a bandaid for the imaginary scratch and/or the cream for the sensitive blotchy area. 

For most with young children, my story is in no way unique.  What may be a bit noteworthy, however, is that as a single working mom, I probably was slightly less doting on the little wounds and as a very sensitive child, Lila was slightly more astute to the minor scratch.

“Stop playing with your mole and love yourself for who you are. You have a beautiful face and that little black dot is part of what makes you uniquely you.  If your friends are teasing you about it, then they are probably not your friend. Stay away from her and play with some of the nicer girls.” And that was it.   Looking back, I had no idea that that was the beginning of what would be a traumatic experience for us both. 

Our Beginning

My first blog post begins midstream, much like everything else it seems. The blog tracks my journey as a single adopted parent; a journey which began 2 years ago when I received a call from my social worker that a 4 day old little girl was in the hospital and needed to be checked out in 5 hours. While my heart began to race, I had been a foster parent for almost a year and had become familiar to the bizarre and often heart wrenching calls of children in need. I had come close just two weeks prior to agreeing to take a 2 year old that had just been pulled from her mother. After a year of waiting to be a mother (decades more than that really), I had grown impatient and was ready to get this party started. After doing a quick gut check though, I decided to pass on the 2 year old as ultimately she was very likely to be returned to her birth mother and I was hoping to be a fully adoptive parent; more than a temporary haven.

So, with the social worker saying think about it, we'll call you back in 20 minutes to see what you decide, I once again was doing a gut check to see if this sounded like my little soul mate in waiting. With a big swallow and a series of quick calls to clear the rest of my week, I called the social worker and said I would take the little girl. I got the directions to the hospital, the name of the social worker to meet, and a very brief medical history indicating that the child had tested positive for drugs and that the young mother was drunk when she came in to deliver the child. "By the way", the social worker said, "the baby isn't named, would you like to name her?" Name her? of course, but I hadn't even thought about it. After a quick google search of girl names, I called my brother on the way to the hospital asking him to search the meaning of Lila- "divine play" he said. I like it. So as I pulled out of Target with infant clothes, a car seat, and some bottles on my way to the hospital, I decided my little girl would be called Lila.

The emotions and adrenaline that I felt as I pulled into the hospital and found my way to the Neonatal ICU is very hard to describe. I was somewhere between a state of shock, exuberance, and terror. As I walk in after a scrub down, looking at all the feeble infants, i see a gorgeous strong baby and hold my breath hoping that was my little girl. Sure enough- it was her. I vaguely heard the nurses saying something about how kind and brave I was, and did I have anyone to help with her? I mumbled something about friends not being able to get off work with such short notice and that I would be fine. There were pictures taken, documents signed and the two of us were wheeled out of the hospital as the start of our journey together.

The day will forever be the turning point in my life and one in which I experienced guiding angels and answered prayers.