She jokes, smiles, laughs…. We no longer have to walk on eggshells every moment of the day.
E. was always a bit different. As an infant she cried if anyone held her but her mother. By the time she was a toddler it was clear that she was terrified of being separated from mom, and would not interact with anyone, including peers, unless her mother was nearby. When people approached E., even as a toddler, she would growl at them. This behavior lasted until she was about 8 years old. E.’s differences followed her into her sleep. She began having night terrors at a young age and would sit-up in bed and scream—without ever awakening. This went on for years. Unfortunately after the night terrors ended, the nightmares began.
E. began pre-school at 2 ½ years of age. The teachers reassured us that she would get comfortable and stop crying uncontrollably when we left after the first few weeks but she never did. The build up to going to school and saying good-bye remained a challenge for the entire time she attended preschool. E. would cry and need to be held by a teacher for nearly the entire 3 years of the program. Often, she would fall asleep from the energy exerted from crying after we left.
E. also had a temper in the early years and could hold a grudge indefinitely. Even now she talks about the kid who bit her when they were 3 years old.
When E. began kindergarten the school fear began in earnest. She would need to be physically removed by an adult and taken into class. This time the teachers reassured us that she would be fine as soon as we left but she never was. The first few days we would see her sitting on the principal’s lap, outside of the classroom, sobbing, as we drove away. Then we learned that she would get under a table and growl at everyone once she returned to the classroom. The teacher said, “I know what to do with sad little girls but I don’t know what to do with her anger.” At this time we started therapy to try to help E. adjust.
E. also seemed to have more energy than others. Her imagination during play was always the driving force in peer interactions. She was always creating a play, or a game, or an activity, but she always needed to be in charge. Her peers were often timid children who allowed E. to take the reigns and be in charge.
E. began having serious stomach pain in 2008. We took her to the doctor many times and tried to convince him that she was not having school refusal pain in spite of the fact that she never liked going to school. We could see physical symptoms that did not improve when she stayed home. After two years of tests, the doctor finally tested for celiac, which she had. At this point the doctors told us we had finally figured out why she had so many early challenges and that a gluten free diet would help control her mood and fear issues as these behaviors often accompanied untreated celiac. In fact, her mood and fear took a turn for the worse. We wondered if the celiac diagnosis could be so upsetting that it caused a worsening of problems but we were told that the diagnosis (a life altering one) was not that big of a deal.
In fall 2011, we watched our daughter turn from a mildly quirky—but fully functioning—11 year old to a scared, suicidal, irrational shut in. A list of ill-prescribed medications only hastened this transformation. SSRIs, ADD meds, and a host of off-label, epilepsy, Parkinson’s, and migraine medications caused rapid weight gain, diminished cognitive functioning, and uncontrollable mania. We removed her from our town’s local “gifted” school after E. broke down during a math test and crawled under a car in the teachers’ parking lot, pleading to be run over. Within a month she had been placed in a 72-hour psychiatric hold in a state facility after kicking out our car’s windshield and running barefoot down the street on a 105-degree day. Soon we were forced to place her in an out of state residential program for nearly three months.
While the long weeks of residential therapy did somewhat stabilize her, she was far from normal. She couldn’t return to school because—from her perspective—everyone hated her. She snapped at the rest of the family for the tiniest reasons. She demanded food, toys, clothes, to be delivered upon demand; she stopped bathing and brushing her teeth. She constantly badgered us to lower the air conditioning settings even when the in-door temperature hovered around 65 degrees. We were emotionally depleted, and could not imagine a world where we could continue to have her stay at home. We had resigned ourselves to the reality of long-term residential care or an out of state therapeutic boarding school.
We knew that the situation was not sustainable. Our family was indeed cracking. But E.’s medical history was complicating things beyong the problems with her bipolar disorder. She also required brain surgery for a Chirari I malformation that blocked the flow of fluid between her spine and cranium. This caused her to lie flat on the couch for three months while suffering from debilitating headaches and pain (and numbness) in her extremities. There she remained, angry, scared, hostile, over-heated, and immobile.
In March this year, we heard about the potential of ketamine treatment from a piece on National Public Radio and the research work of Dr. Papolos into a common subtype of childhood-onset bipolar disorder, Fear of Harm. We quickly contacted him and began treatment just after E. returned from brain surgery. Before the first administration of ketamine, we were highly skeptical (so many failures), and E. did not make it any easier by refusing to allow us to spray anything into her nose. After a battle or two, we administered the drug correctly and have been astounded by the results. While she’s far from perfect, E. has undergone a remarkable transformation.
After having been on ketamine for two months, she has once again become a participant in life. She jokes, smiles, laughs, and even eats dinner with the family. We no longer have to walk on eggshells at every given moment. Granted, we still have a long way to go, but the progress thus far is nothing short of remarkable.
So, where are the research findings? Why all the anecdotal information but no data?