WOW! Is this a potential ‘Cure’ for My Daughter’s Obesity and extreme Hunger?

Will this help my beautiful little girl live a happier, healthier life? I HAVE to try it and see!

Will Oxytocin help my beautiful little girl live a happier, healthier life? I HAVE to try it and see!

I’m so excited about this, I can’t type fast enough. Is  this a potential cure for Hana’s obesity and constant debilitating hunger? I won’t know until I’ve got my hands on it and tried it… On what, I hear you cry! It’s actually not a wonder drug, it’s something very simple, it’s  a hormone we all release, one that Hana used to release, and you’ve definitely heard of it, it’s Oxytocin.

What is Oxytocin?

Oxytocin is that ‘feel good’ hormone that we release during hugs and physical contact. It is well known for being produced during labour and breastfeeding but it is also secreted and utilised for multiple bodily functions. It comes from the pituitary gland and because Hana’s pituitary gland no longer works, she can’t produce it anymore.  Kind of sad to think that she doesn’t get the same ‘rush’ that I get when I put my arms around her and hug her.

But what does this have to do with Obesity and Hunger?

Last weekend I was scrolling through one of the Craniopharyngioma Facebook groups, and one very clever woman who had the tumour, needed to start taking the hormone Oxytocin because she is breastfeeding, her name is Brooke Szczepanski and I want to credit her for making this initial ‘light bulb moment’ connection. She came across THIS article about oxytocin and, brilliantly, shared it with us, highlighting the significance of ‘point 6.’ I was gripped when I read it, the article mentions a study about Oxytocin being used as a treatment in obese mice;  after  being given oxytocin the mice had a reduced appetite and lost weight. I was hooked on exploring this further from then on.

I went on to read THIS article and discovered more clinical uses for Oxytocin for people who have lower than normal levels of oxytocin. Studies so far have used oxytocin for Autistic Kids – results showed enhanced social interaction, it has been used successfully for people with headaches, depression and it is also used to reduce stress levels. These common uses are encouraging as it proves that use of synthetic Oxytocin not only has a good safety profile but also has great potential to impact on much more than the beastly hunger and terrifying weight if  Hana uses it. In fact it is such a damn good hormone, I’m flabbergasted that it isn’t given out as a standard hormone in “bio-identical” hormone replacement therapy in panhypopituitary patients – it seems crucial for overall and general health and wellbeing in the human body, why has it never been included in the Post Brain Tumour Hormone Package? I’ll answer that question in another post.

By the way, the listed side effect of ‘fatigue’ if Oxytocin is given in high doses may not be relevant to Hana – the fatigue occurs as endogenous secretion of cortisol (stress hormone) naturally decreases in the presence of high oxytocin levels. The difference in Hana is that I control her levels of stress hormones via her medication, in theory the fatigue could be avoided by maintaining a normal steroid dose.

But back to Obesity and Hunger:

The 2011 study on mice showed that mice, who had been made obese through a high calorie diet LOST WEIGHT (via a reduced appetite – the food choice remained the same) during a 13 day trial of oxytocin injections. Of course I wanted to know if there was any follow up, and I found another study, done in 2012 that reached the same conclusions as the 2011 study, here is a link to an article about that study. The researchers of the 2011 study stated that oxytocin may have a use in humans for the management of obesity AND hyperphagia. WOW.

Then I came across the first human trial conducted in 2013! The results were very promising and I have emailed the authors of the study to see if they know anything about treating patients who are actually totally deficient in Oxytocin, like Hana. Here is the awesome study.

So will Hana be the first child- human ‘trial’ in this regard?

I need to get  hold of Oxytocin and try it on Hana. As far as I know, it hasn’t been trialled in hormone deficient children for weight and hunger issues, so the most tricky aspect will be working out a dose for Hana and then working out how that dose will impact on her other hormones; it will be very experimental. I think the best starting point would be to compare the doses given to the autistic children vs the adult doses given in the 2013 Obesity study. In theory Hana should be able to tolerate a higher dose than the Autistic children since she does not have any endogenous oxytocin due to her tumour. I think Hana would make a fascinating case study and I would definitely write up the results of the therapy and send it in to a journal if it proved to be beneficial in anyway – not just weight and appetite related. They are many Cranio survivors who could benefit from improved hormone therapy and enhanced quality of life.

So what now? Do you think I’ll be able to convince my endocrinologist to prescribe it for her?? I’m nervous but I’m on a mission, nothing will stop me. I’ll keep you posted!

For more on our brain tumour journey and for more on why I’m battling against obesity in my six year old daughter check out my posts here. I also update things daily on my Facebook Page.

 

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  9 comments for “WOW! Is this a potential ‘Cure’ for My Daughter’s Obesity and extreme Hunger?

  1. Mary V
    May 18, 2014 at 11:27 pm

    Oh my goodness!!!! I’m literally jumping up and down out of excitement about this. Just the possibility of it working is amazing. If anyone can present a case to an endocrinologist it’s you. Go for it!

    • Naomi R Cook
      May 18, 2014 at 11:42 pm

      I agree! Just the chance that it may work – in any way actually – is awesome! I’m bubbling over with excitement today.

  2. Steven
    May 18, 2014 at 11:39 pm

    Sounds promising, I love reading you thinking outside the box. You WILL beat this 🙂

    • Naomi R Cook
      May 18, 2014 at 11:43 pm

      Yes! The problem is, what if her doctors only want to think inside it? Haven’t got a plan b yet!

  3. courtney
    May 19, 2014 at 3:47 am

    Fellow cranio mom here from USA, my daughter is 5 and is 12 weeks post-op! I saw this posted on FB which led me to your blog! You said so many things that I have felt and am feeling before, during & in the never ending aftermath! I’m going to talk to my Endo as well! Best of luck! Sending warm hugs!

    • Naomi R Cook
      May 19, 2014 at 3:54 am

      Hi Courtney, thanks so much for getting in touch, it’s so nice to know that we aren’t alone. It’s such a dark, frightening time. Keep me posted on what happens and I’ll post our updates here!

  4. Mary
    May 19, 2014 at 4:15 am

    Fingers crossed for you!

  5. Frogee
    May 21, 2014 at 1:30 am

    Naomi, thinking good thoughts and saying prayers for you on this journey. You are such a bright beacon a mist the dark journey.

    • Naomi R Cook
      May 21, 2014 at 2:07 am

      What a gorgeous thing to say! Thank you so much

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