My Daughter NEEDS Oxytocin after her Craniopharyngioma Brain Tumour-But why isn’t she getting it?

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Hana has sometimes shown affection to her sister since her tumour was removed but it is definitely a lot less than before. She definitely seems to have reduced empathy towards her. She can be distressingly ‘cold.’ I wonder if Oxytocin will help her ‘feel’ the love once again? I hope so…

Two days ago I published this: WOW! Is this a potential cure for my Daughter’s Obesity and Extreme Hunger? This ‘cure’ is not a wonder drug at all but something my daughter, and most likely all other patients with Craniopharyngioma, are deficient in. My daughter takes a cocktail of drugs to keep her alive (see Brain Damage and the Medications that Keep my Daughter Alive) but not once, Not Ever, did anyone even mention the possibility of her taking supplemental Oxytocin, a hormone that she no longer produces.

Aeons ago it was thought Oxytocin was only necessary for breastfeeding and labour. But there are NO excuses for still believing that – research into the incredible, whole bodily actions of Oxytocin have been abounding for years. There is a great pamphlet on the multiple uses of Oxytocin which can be found here, the earliest listed reference I could find was 1995, that’s a loooong time ago in medicine.

Oxytocin is already being prescribed for a range of medical conditions for people thought to be low in the hormone, for example in Autistic children, in those suffering stress and anxiety, repetitive behaviour, loneliness, relationship difficulties, sexual dysfunction – the list goes on. But why hasn’t anyone, over the last few years postulated it’s potential for enhanced quality of life for those that DO NOT PRODUCE THE HORMONE AT ALL? For those on ‘complete’ hormone replacement therapy? If someone has done a study on this, please let me know, because us parents of kids with craniopharyngioma know nothing about it…and I can’t find anything online.

Over the past couple of days I have been conducting non-stop research on Oxytocin. I wanted to share the researched benefits with you so you can see, and so others who have had the same tumour as Hana can see, how preposterous it seems (to me anyway – a consumer of the system) that it is absent from their medication regime. Is it possible that I am missing something here?  I’m open to opinions, after all, I’m not an endocrinologist – I could be terribly wrong.

Benefits of Oxytocin

General: Increases smiles, improves social interaction, lowers stress levels, reduces anxiety, improves orgasm, regulates ‘thoughts of food/appetite’, encourages relaxation, improves peripheral circulation.

It is worth adding here that since the removal of her tumour Hana has had difficulty relating -lovingly- to her sister. I thought it was purely a brain healing issue, but having looked at the effects of oxytocin I can see this may also be due to a hormone deficiency. Anecdotally, many cranio parents have told me that their children ‘don’t have many friends’ which also made me think this could be related to low or non existent levels of oxytocin. Speculation only.

Medical Disorders: It is being studied for its use in Depression, Schizophrenia, Autism, Anxiety Disorder, Eating Disorders and Drug abuse.

Obesity Related: The 2013 human study that I found over the weekend found these awesome features of administered Oxytocin in obese patients: Improved Blood sugar balance (therefore could be indicated for treatment of Diabetes), decreased Insulin ‘dumping’ (this make you hungry and makes you want to eat again), reverses insulin resistance and glucose tolerance, lowers ‘bad’ fats in the blood and researchers found the Oxytocin also improved liver function in their patients – Bonus!

So the above metabolic changes facilitate weight loss in addition to the fact that Oxytocin appears to reduce Hunger through acting on satiety centres in the brain. The researchers thought that Oxytocin facilitated weight loss via metabolic changes in a similar fashion to the actions of ‘lap banding’. Another member in the Cranio Facebook group (thanks Christina!) found this interesting study in London where Oxytocin was used to decrease food preoccuption in patients suffering from Anorexia. The total irony in this is that I suffered from Anorexia as a teenager – it’s almost hysterical that they find a potential cure for it now…a cure I want to use to cure the very opposite to Anorexia in my own daughter. Life is seriously screwed up.

Testing Oxytocin Ourselves

I was very lucky two days ago in that I nabbed an appointment to see a Dr in the city, a GP who is passionate about bio-identical hormone replacement. His name is Dr Hart, here he is. He usually sees adults but very generously agreed to see Hana when I explained our journey and that I was desperate to try anything to help her. I chose to see him before my endocrinologist with regards to Oxytocin supplementation as I knew he was familiar with using and prescribing Oxytocin – something a paediatric endocrinologist simply wouldn’t be familiar with as 6 year olds generally don’t lactate or go into labour! Then together, we planned to discuss the oxytocin trial with our endocrinologist – this is to be a team approach and I obviously need his blessing, support and brains in this too.

We will chart Hana’s progress and share it here. I’m expecting it to be slow as we will “start low and go slow” with her dosages as we know she is very sensitive to hormones (remember the 1 kid every 10 years with Growth Hormone related Cerebral Oedema incident!?). But what we really need is for someone, somewhere to conduct a proper study on this, as what is true for Hana may not be true for others:

Q. Why wasn’t my daughter prescribed Oxytocin along with her life-saving meds? A. I’m guessing this is due to an absence of recent studies demonstrating exactly how it would help people like her. If it isn’t PROVEN to be True in a Randomised Controlled Trial, it isn’t True, it’s a theory! And quite understandably many Doctors are cautious of theories. Fair enough.

My Next Mission therefore is to contact research centres, that have conducted trials on oxytocin and obesity to see if one will consider conducting a trial on cranio patients with hyperphagia and obesity. In addition, even though it’s an obvious ‘no brainer’ (haha) that people like Hana (should) need oxytocin routinely for psychological benefits, without a study to back this claim/idea/concept few doctors will be as forward thinking as Dr Hart, and I wonder how easy it would be get Oxytocin routinely prescribed. And with that, I will sign off and also keep you posted.

Thanks for reading! There is more on our Brain Tumour Journey under the Brain Tumour Category and I usually update my Facebook Page every day with news.

 

 

 

 

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  2 comments for “My Daughter NEEDS Oxytocin after her Craniopharyngioma Brain Tumour-But why isn’t she getting it?

  1. Melissa
    September 4, 2014 at 3:17 am

    I was diagnosed with pan-hypopituitarism as a result of a post-pardem hemorrhage in 1998. I have struggled for years to get doctors to do what is best for me and not what they have been instructed to do by a text book. There is clearly not enough research on the signals sent from the pituitary and how to properly replace those hormones when there has been trauma to the pituitary. I am currently working to get on proper hormone replacement therapy, even after all these years. This illness needs more research so we can help those affected with it. I know the struggle of living without those critical signals from the pituitary. I wish you and your family the best of luck.

    • Naomi R Cook
      September 4, 2014 at 3:20 am

      Hi Melissa,
      I couldn’t agree more! Thanks for getting in touch x

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