When Dr. Sue Carter discovered the social bonding properties of oxytocin in her seminal research on prairie voles, it opened up a world of research regarding oxytocin's role in autism, social anxiety, relationships, and other arenas.
Long, long overdue (in my opinion) is the need to study social impairment among survivors of pituitary and hypothalamic tumors. Anecdotally from my own observations of Sasha as well as from hearing reports from many others with craniopharyngioma, there are some commonalities that affect social motivation and social impairment. A while ago, I sent out a survey on the mental health of cranios and found that issues with socializing were rated among the most common and problematic areas affecting quality of life (guess what was number one...? Yep, HO!)
Now, there is a study at Stanford University recruiting 6-30 year old subjects to study this very phenomenon. Dr. Karen Parker is the principal investigator. Please see this study flier for more info: http://med.stanford.edu/parkerlab/research/Biomarkers-of-Social-Impairments-in-Individuals-with-Hypothalamic-Pituitary-Disorders.html
From our observations before oxytocin, Sasha had an odd combination of being very warm and friendly yet lacked friends. He also had a strong tendency to want to chat up adults but really didn't show any interest in kids his age. He was quite content to stay by himself and didn't complain of feeling lonely. He appeared to feel comfortable hanging out with his adult aides at school. Most adults who met him found him very charming and mature, an "old soul." Interestingly, I have heard very similar reports from other parents of cranio kids.
What's up with these symptoms? Could it be that something is amiss in their oxytocinergic systems since many of these brain tumor survivors have had brain damage and NOT had their oxytocin replaced by hormone replacement therapies? Since Sasha has been getting oxytocin replacement, he has shown more social motivation. He made a friend a year ago and continues to see him on the weekends. He would also like to make more friends and has been making some attempts through the lunch time clubs in high school. Because he's missed 5 years of socializing, he is behind and it will be hard for him to catch up with his peers in the social realm, but this is a noticeably different way of being for him... before OT, he was totally indifferent to wanting to hang out with kids his age.
It is my hope that more can be learned about the socialization issues of these brain tumor survivors. Depending on what Dr. Parker learns, perhaps there will be more impetus to offer treatment (got oxytocin?) for the social needs of survivors of pituitary and hypothalamic tumors. Please consider participating in this very important study. Thank you!
