If you’re reading this, is there any chance you can help me with a campaign? I want to ask scientists worldwide to consider researching a new potential cure for my little girl’s brain tumour related health conditions. All you’ll need to do is press “share” on your Facebook or share through whatever social medium you use so that this blog post is seen by as many people as possible. This way, someone, somewhere may go
“YEAH! Cool idea for a study! Let’s do it!’
And that way, you may be instrumental in pushing science forward in a direction that could help my daughter and thousands like her have a better quality of life.
If you are short of time just read these five short paragraphs:
In a Nutshell My six year old daughter had a brain tumour called a ‘Craniopharyngioma’ diagnosed earlier this year. The tumour is out but she is still sick and I promised I’d find a way to heal her: “I will heal you”…A promise to my daughter after her Brain Tumour. So what I want is someone, somewhere to do a study on the effects of Oxytocin Hormone Replacement Therapy in patients with Craniopharyngioma. Things that I would like looked at would include; 1. Management of Appetite and Weight Regulation 2. Improved Perceived Quality of life.
Survivors of Craniopharynigoma are lucky – their prognosis is better than many other types of brain tumours.However, they frequently wake up from their surgery with damage to an area of the brain called the “Pituitary Gland.” The Pituitary Gland is responsible for secreting hormones and so Craniopharyngioma survivors are given a selection of medications to replace some of the hormones missing from the Pituitary Gland. An example of these medications includes synthetic hormones such as Thyroxin to replace missing Thyroid Function and Steroids to replace missing Cortisol, these prescribed hormones are necessary for sustaining life. However, not all Pituitary hormones are replaced via medication; the Pituitary Gland also secretes other hormones that are not directly linked to ‘survival’ and one of these hormones is Oxytocin.
My daughter is alive, she is surviving, yet watching her recover has left me wanting: There is so much more to life than merely ‘surviving it.’ Hana struggles with low energy, low mood, poor social interaction and the worst of it all; an extreme hunger (hyperphagia) that possesses most of her waking thoughts and an enormous, debilitating weight gain, the dreaded onset of Hypothalamic Obesity. So what does Oxytocin have to do with this? Let me tell you:
Oxytocin has been studied over the last few years for its positive effects on mood and sociability in people thought to produce low levels of the hormone, yet suriviors of craniopharyngioma like my daughter, who can no longer produce Oxytocin are not offered oxytocin as part of their standard hormone replacement therapy. Secondly, a study last year, 2013,on obese human subjects showed that oxytocin administration decreased appetite and facilitated weight loss through metabolic changes – with no negative or toxic side effects. Could these remarkable effects of oxytocin, a missing, non-replaced hormone, help people like my daughter?
Doctors are less likely to prescribe a ‘new therapy’ (even though it’s known to be beneficial in other areas) without a study, or a human trial on the intended population. So I am now calling upon the international scientific community to consider conducting a study on a sample of craniopharynmgioma survivors so that we may all see, and know, what impact Oxytocin Hormonal Replacement could have in their lives.
That’s the shortest, briefest summary. If anyone reading this thinks such a trial could be a good idea, please get in touch via this blog or my Facebook Page and I’ll spread the good word to other Cranio survivors and their parents.If you don’t want to read anymore, please press the ‘Share’ button or email this link to someone who may want to help.
IF you have time to read more, here is the background:
I declared war against the onset of Hypothalamic Obesity in my six year old daughter the week after her brain tumour was removed.
It started here: Healing my Daughter’s Brain and a raging War against her Obesity
and then, last week I came across something amazing via the Cranio Facebook Page and I wrote this –
and I did some further research on it –
The medical profession has no cure for my daughter’s condition which is characterised by an all consuming constant hunger and rapid weight gain in spite of diet and exercise. Medical studies haven’t been able to figure out exactly why some patients with Craniopharyngioma develop Hypothalamic Obesity (although there are risk factors, more on that here) but I’m beginning to wonder whether PART of the answer lies in inadequate, partial hormone replacement therapy? The hormone Oxytocin has SO many other functions beyond lactation and labour yet it is not prescribed for patients with tumour related Panhypopituitarism (non functioning Pituitary Gland) and many go on to develop hyperphagia and weight gain. As far as I can see, no one has yet suggested that this missing hormone may actually be a contributing factor to this distressing condition. Medications that work against the body are prescribed, like Ritalin and Dexamphetmaine, stimulants to crank up the broken metabolism and Sympathetic Nervous System, yet could the answer – or part of it – actually lie within a missing, replaceable hormonal signal? Could part of the solution be so obvious, so glaringly simple, that science and medicine have been blind to it?
I will be trialling the hormone, Oxytocin on my daughter over the next few weeks – as far as I know no other child worldwide after a craniopharyngioma has ever used Oxytocin for improved quality of life and weight/appetite regulation. Hana is the first! I intend to blog in detail what I observe. But watching the progress of my daughter isn’t enough. She is highly sensitive to even minute hormonal changes and it could take us a while to work up to a therapeutic dose. In addition, a case study is not considered rigorous science. I could do a Ph.D on the topic – I may well be pushed to if no one else wants to do the study – but a Ph.D will take me years to complete! Meanwhile there are hundreds, thousands, of people who could potentially be benefitting from improved quality of life from Oxytocin replacement therapy right now…If it is proven to help.
This is why I need you to press the share button, and send this “Plea” to the inboxes of anyone you feel would be interested in taking this further. Someone may know someone! I hope and feel the future of my daughter, and so many others, could be so much brighter – if only science would let it be so.
Thanks for reading, Naomi Cook