Just over two years has passed since the incredible day it ‘clicked’ that not only was Oxytocin missing from Hana’s medication regime (and, at the time – in my opinion -in the regime of every single Panhypopit patient in the WORLD) but that she NEEDED it and MUST have it.
To my surprise, my initial posts on oxytocin for the patient population like Hana went viral with one post reaching over 20,000 people on Facebook in 72 hours. For months I was contacted by people worldwide who were interested in, or desperate to get oxytocin as part of their medication regimes.
Meanwhile, I had started Hana on oxytocin and although I didn’t find a dramatic impact on appetite and weight at the low dose, I discovered a phenomenal incidental finding that transformed Hana’s, and the whole family’s, quality of life: Her sociability.
Hana had woken up from her initial surgery not only without pituitary function, but also without affection and any desire to socialise with us. Previously loving and affectionate, the new post surgical Hana was cold and had no desire to ‘play’ with us, preferring solitary activities.
One thing was clear – science wasn’t ready to yet move in the direction of studies for this hormone, although some medical specialists I contacted voiced that they had ‘considered’ what oxytocin may do in this population, the majority that I encountered ‘poo poohed’ the idea. Many, to my shock and dismay, still viewed oxytocin as being only necessary for lactation and labour – incredible, really incredible, considering the amount of studies in different scientific fields that demonstrate oxytocin as the ‘love’ hormone, needed/useful for a myriad of bodily functions.
Although I had an extremely out of the box and supportive GP behind me, there were black marks against my name in my daughter’s medical notes amongst her early specialists for daring to trial something ‘unproven’ and ‘untested’. My reputation with some of these care providers was absolutely negative and because I was simultaneously proposing another world first, potentially life saving bariatric surgery for my little girl I will admit that I was worried about whether some pious health care professional overseeing Hana’s case would want to involve the social services. These were frightening, lonely days and I’m glad they are over.
It was time to do something about it myself – “If science won’t move for you, move science” became my motto and I decided that I would write up my findings in a case report and submit it to medical journal for publication so that my efforts to help Hana would not just be recognised and made legitimate for her benefit but also so that the many people contacting me would have something concrete to hand over to their own specialists who were demanding to see the ‘science’ before trying something new.
The wonderful GP John Hart who listened to me and agreed to prescribe Oxytocin for Hana agreed to co-author in addition to a lovely paediatric endocrinologist in Florida. I was lucky enough to get editorial input from a high profile neurosurgeon in LA and also from one of my favourite doctors of all time, Hermann Mueller in Germany.
Yet the road was tough – my initial ‘feelers’ for co-authors led me to a couple of academics who wanted to not only help me write the paper (which was almost completely written) but also take my name off the paper, claiming this medical world first for themselves! I’m lucky that my husband pushed me through this ‘hump’ in the road, demanding that I would not remove my name from my discovery, my own research and my hard work putting it all together.
Well, as you know from Facebook, the paper was submitted last year and accepted for publication by our dream medical journal, the Journal of Pediatric Endocrinology and Metabolism, and now my name Cook, N et al. will be cited in the studies that follow as science moves forward to improve the lives of those like Hana.
I’m just overjoyed that I have had the chance to be able to contribute something new to the medical evidence base and I’m grateful that the Journal also agreed that this very limited, non-objective case report was important for the medical community to read and learn from.
If you want to see the snail trail for the whole thing (minus the drama’s in the middle – I haven’t blogged about those, I’m saving them for the memoir 🙂 follow the links in this post.
Meanwhile here is the abstract and link to PDF:
Parent observed neuro-behavioral and pro-social improvements with oxytocin following surgical resection of craniopharyngioma
Social and emotional impairment, social dysfunction, and neurobehavioral impairment are highly prevalent in survivors of childhood craniopharyngioma and negatively affect quality of life. As surgical resection of craniopharyngioma typically impairs hypothalamic/pituitary function, it has been postulated that perhaps post-operative deficiency of the hormone oxytocin may be the etiology of social/emotional impairment. Research on the benefits of oxytocin treatment as a hormone facilitating social interaction is well established. However, no research has yet been conducted on patients with known pituitary/hypothalamic dysfunction due to structural lesions or surgery. This case report investigates the effects of oxytocin therapy on a youngster with pituitary/hypothalamic dysfunction after craniopharyngioma removal. In this individual, treatment with low dose intranasal oxytocin resulted in increased desire for socialization and improvement in affection towards family. In light of these findings, the authors believe that further research into the potential benefits of intranasal oxytocin therapy for patients with panhypopituitarism is necessary to determine whether a broader population may also benefit from intranasal oxytocin therapy.
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