Update on how Oxytocin Hormone Replacement changed our lives! (Please share and spread the word for Brain Cancer Survivors and Sufferers of Pituitary Disorders)

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Oxytocin brought our affectionate and loving Hana back to us…

This update is loooong overdue! Sorry about that, but if you’ve been following my Facebook page you’ll know that life for my little Brain Tumour survivor, Hana (- and us!)  has been pretty tricky recently. The ups and downs have really taken it out of me, feeling just a tad faded and jaded…

The Earlier Blog Posts:

So, as you know, one Sunday afternoon, while scrolling through Facebook back in May, I had this major ‘apple dropping’ moment about Oxytocin, I then went through the following thought processes and motions:

1. Hana’s Hypothalamic-Pituitary Access is damaged due to her Craniopharynigoma brain tumour.  Hana takes medications to substitute missing hormones but this therapy only appears to be ‘partial’ (she just receives the hormones necessary to keep her alive and grow). So I asked the question: Why doesn’t she receive Oxytocin as part of this therapy? (See, My daughter NEEDS oxytocin after her brain tumour – Why isn’t she getting it?).

2. I complied a non-exhaustive a list of studies that could back the concept of replacing Oxytocin in Pituitary patients and brain cancer survivors. See: Studies on Oxytocin;A non exhaustive list that may be of use to Brain Tumour Survivors …. and Oxytocin for Muscle Healing & Anti-Ageing: Another reason to Prescribe for Brain Cancer survivors?

3. I asked readers to share a Plea – to draw attention to my wish that scientists (somewhere in the world!) study Oxytocin for brain cancer survivors with pituitary and hypothalamic damage. There is a huge gap in the research here. Pituitary patients appear to be a completely ‘forgotten population’ in Oxytocin focused research, which is really quite bizarre considering Oxytocin is a hormone.

2. Then my mission was to find someone willing to think outside of the box and prescribe Oxytocin to improve Hana’s quality of life. I was very lucky and found Dr Hart. Meet our AWESOME doctor here: Introducing Dr John Hart and Compounded Pharmacy

3. Then, under his supervision, I conducted my own ‘oxytocin trial’ on Hana and was amazed by the results; My daughter is the only child in the world to take Oxytocin for Extreme Hunger, Obesity and for Emotional Wellbeing: This is what happened.

From then until now:

So – you’ll know from the last post linked above that the higher doses of Oxytocin (5IU twice a day) caused Hana to experience extreme thirst which made her drink more – this was highly undesirable due to the actions of her medication for Diabetes Insipidus – this medication prevents her body from excreting fluid whilst it’s in action, so if excess fluids are consumed, water retention and hyponatremia result and  this is a potentially dangerous condition. We had to decrease Hana’s doses to 1IU twice a day.

We have carefully observed the potential effects of Oxytocin on Hana’s other hormones, knowing full well that hormones interact and work synergistically. As far as we can observe Oxytocin hasn’t affected anything except for a reduced DDAVP requirement (this is the medication for her Diabetes Insipdius) and this is actually a very desirable outcome as Hana had previously been on sky high doses of DDAVP – now her requirements have fractioned. This is such a bonus as it means less medication and thus improves her quality of life even further.

How much Oxytocin does Hana actually need?

Firstly it’s not really known how much Oxytocin individuals secrete every day – one reason being Oxytocin increases with physical contact! For example, on a very huggy day with a lover someone could secrete larger amounts of Oxytocin than for example, on a day they have a stressful meeting at work! Or, for example, someone with a dog or cat at home may also secrete more oxytocin than someone living completely alone. I once read in a brochure (no link or ref – sorry, it was a photocopied piece) about Oxytocin that it’s believed individuals may secrete something between 1-5IU a day. If this is the case then Hana’s current dose is akin to a ‘physiological’ coverage. HOWEVER – as you also already know, I originally wanted to give Hana Oxytocin due to the results of a 2013 study on Obese subjects, all of whom lost weight and experienced a reduced appetite with high doses of Oxytocin supplementation. The doses given to these participants was 24IU four times a day, much, MUCH more than the dose Hana currently receives.

How does Hana benefit from Oxytocin?

On the current dose of 1IU twice a day, Hana’s appetite and weight – a huge source of suffering to her due to her Hypothalamic Obesity – are not affected (more on that terrible condition here). But, Oxytocin has transformed her life and our lives in the following ways:

1. Oxytocin improves Hana’s mood and sense of wellbeing. This in turn inspires her to play actively – something she wasn’t doing at all post surgery before Oxytocin administration. She once again enjoys swimming, active imaginative play and occasionally, riding her bike – just like our old Hana used to.

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Hana is stroking her little sister’s face. Post op and before the Oxytocin, Hana had lost all affection for her little sister.

2. Oxytocin was a godsend to Hana’s relationship with her younger sister and overall ability to socialise. Post surgery Hana had become very cold and emotionally distant to Maryam, my other little girl. I’d go as far to say there was a borderline cruelty in the lack of love she demonstrated towards Maryam – she simply didn’t care when Maryam was upset anymore, she wouldn’t play with her at all and was almost rude and impatient when Maryam wanted to talk to her! It was devasting to watch, poor little Maryam suffered so much 😦 Well, all that transformed with Oxytocin! Within a couple of doses it was like a switch had been flicked on, Hana started playing with Maryam again. Now she is back to her old loving self, she tells Maryam she loves her, takes care of her again, and she sometimes tells me when Maryam is at preschool: ‘I’m thinking of my sister…I WANT MY SISTER!’ As a side point, I’ve also observed Hana’s love of her cuddly toys return with Oxytocin treatment. Post operatively Hana simply didn’t seem to care about her soft toys anymore – it was quite weird but almost like her nurturing instinct had gone. Now she is beautifully loving and kind to her soft toys again.

NB Feedback from other Pituitary Patients and Craniopharygnioma Survivors has  interestingly highlighted similar ‘social issues’ – some parents have said their children fail to socialise as they did prior to surgery. It seems that so many others could potentially benefit Oxytocin replacement therapy. Please help me get the word out there!!

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Note the different layout of pens to the layout in THIS post on OCDish behaviours post op.

3. Finally Oxytocin alleviates a certain element of an obsessive compulsive tendency that Hana developed post operatively. As you can see from this earlier blog – Could Oxytocin reduce Obsessive Compulsive behaviour in Brain Tumour survivors? –  post operatively Hana developed some tendencies that are obsessive and compulsive in character. The higher dose of Oxytocin pretty much eliminated these completely – on the lower dose I’d say her tendencies have improved significantly but she still has a few ‘rules’ about her pens in particular – i.e if they are wonky or touching something else on the table. However, her thrice daily obsession with counting and sorting her pens into colour coded groups has completely dissipated with the 1IU twice a day – thank goodness…

NB Feedback from other survivors and parents of Craniopharyngioma survivors confirms that Hana isn’t alone in experiencing the onset of OCD style behaviours post operatively. I can’t find any studies that have analysed or assessed this trait in this particular population but I can confidently say that anecdotally, it appears that many Cranio survivors and potentially some other Pituitary patients have issues with OCDish behaviour. 

AGAIN, this is further proof – to me at least – that there really needs to be a number of scientific trials conducted  on the effects of Oxytocin replacement therapy on these unique populations. It is well documented that Cranio survivors frequently suffer from a very poor quality of life yet here we have found something that ‘appears’ to have the potential to improve life quality – in numerous areas – for many people all over the world.

I need someone, somewhere to listen to me! I need someone who is interested in this area of research to read these experiences, to hear what I have to say…Please help me get the word out there!

What next?

We really want to try and increase the amount of Oxytocin that Hana can tolerate. What we intend to do is add another 1IU dose during the day and observe for signs of increased thirst. If that is successful we can attempt a fourth dose. Then we can attempt 2IU once a day followed  by three other doses of 1IU and move up like that. We may never  be able to get to the therapeutic dose that successfully facilitated appetite and weight loss in the obese subjects of the 2013 study, but to be honest that doesn’t matter to us. Hana’s quality of life has been transformed – and so has the quality of our family life, thanks to Oxytocin.

Opposition from other health care professionals…

We do face opposition from other care members of Hana’s medical team for adding Oxytocin to Hana’s medications, and I will be writing a separate post on this in the coming weeks. But it is worth stating right now that if we were to cease Hana’s Oxytocin, it would be highly detrimental – even harmful – both to her and the family unit.   We do realise that many doctors would have  a problem with the administration of a medication that hasn’t been trialled and tested in this specific population but as you readers all know, from the non-exhaustive list of studies I’ve linked to above, Oxytocin is well known for it’s safety. Earlier this week I wrote this on a Pituitary news site  where there was a discussion – initially prompted by this trial on Hana – about Oxytocin:

“If you aren’t a Pioneer, it’s easier to brush NEW ideas aside and say in a dismissive, authoritarian kind of voice: ‘This is complicating management.’ The thing is, the evidence base is there. It’s just not tried and tested on Pit Patients – yet. Well, I’m not going to wait 20 years or so for science to catch up and ‘tell’ me I am now officially allowed to improve my daughter’s quality of life.”

Thanks for reading,  more of our Journey  can  be found here, and if you fancy checking in with me on my Facebook Page, I’d love to hear from you. Meanwhile, please share if you care and help me get the word out. Maybe someone, somewhere will find this interesting and want to conduct a clinical trial…

 

 

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  8 comments for “Update on how Oxytocin Hormone Replacement changed our lives! (Please share and spread the word for Brain Cancer Survivors and Sufferers of Pituitary Disorders)

  1. Linda Sawtell
    September 25, 2014 at 3:18 am

    Brilliant and passionate post Naomi. Thank you. I am hoping I can get someone to prescribe this to me after having damage to my gland from surgery.

    Thank you for being a voice for pituitary patients. No one is listening . . .

    • Naomi R Cook
      September 25, 2014 at 3:20 am

      They will…we just need to speak louder. Someone will listen eventually. This is just the start! xx

  2. Amy B
    April 19, 2015 at 1:42 pm

    Hi! I actually sent you a PM on FaceBook. I would really love to chat with you about potential treatments for your daughter such as: Beloranib (Stage 3 clinical trials for PWS), Essentialis (can’t remember the name of the drug), CBD Oil, MCT Oil, COQ10, and L Carnitine. Oxytocin is being studied in PWS right now. There have been mixed results in prior trials but they are not sure if the dosage was the correct one. There is hope! As you know, many symptoms of PWS are the same as with a hypothalamic injury.

    • sarah
      July 6, 2015 at 7:33 am

      PWS?

      • Naomi R Cook
        July 7, 2015 at 5:15 am

        Prader-Willi Syndrome

  3. sarah
    July 6, 2015 at 7:32 am

    Omg naomi youre a bloody champion and a right firecracker and my new idol (lol) really, what an inspiration… wish id had the energy/presence of mind/balls to stand up and shake things like youve done, when our Taran needed me too…

    • Naomi R Cook
      July 7, 2015 at 5:16 am

      It would have been very hard without a medical background, my husband is also medical so we were well placed to do this.

  4. Kalyn Kavanaugh
    July 4, 2016 at 5:39 am

    Thank you. Thank you for your hard work!!!

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