“If Science Won’t Move for You: MOVE Science!” Oxytocin and how YOU are Moving Science!

If Science won't move for you: Move science! I believe that together we can leave a little heart shaped mark on Planet Earth - we just need to keep on pushing, asking, pestering and TALKING about Oxytocin and things will change! Thank you NASA for letting me share the gorgeous image

If Science won’t move for you: Move science! I believe that together we can leave a little heart shaped mark on Planet Earth – we just need to keep on pushing, asking, pestering and TALKING about Oxytocin and things will change! Thank you NASA for letting me share the gorgeous image

Science is moving forwards and it’s you guys that are moving it!

I’m hearing there are some Oxytocin changes on the grapevine and some of it is thanks to YOU for reading and sharing my posts on Oxytocin and Hana’s trial and for persisting and believing that treatment for Pituitary patients could be better! Of course I’m not saying that these recent blog posts can account of all the changes happening now – the Pituitary consumer community was talking about Oxytocin waaay before I came along with Hana’s Story – but I do know that some of these recent changes  occurred after my posts began to be widely disseminated. THANK YOU for doing this.

Moving Science:

1. I have decided to truly try and move science forwards myself by writing a Case Report of Hana’s Oxytocin trial – Dr Hart (her prescribing Doctor) will co-author it with me and we will submit it to a Peer Reviewed Scientific Journal for (hopeful) publication.

2. “Toot Toot!”

One reader sent me a message saying she’d sent my blogs on Oxytocin to an endocrinologist in the USA. A few weeks later he apparently announced that he would begin prescribing Oxytocin! Hooray!

After reading my blog posts, another Endo in the USA has agreed that Oxytocin should be studied and is now contemplating doing it himself! Hooray!

3. German Expert

I’ve  been in touch with an expert on Craniopharyngioma and Hypothalamic Obesity in Germany. I told him about our Oxytocin trial and he had this to say:

” Your treatment is very interesting. We currently investigate neuropsychological findings in appr. 40 craniopharyngioma patients in relation to their oxytocin concentration in saliva. We conducted this study during the national meeting of the support group which recently took place in Germany. We have no experiences on oxytocin treatment, but this study will hopefully be conducted during the next meeting in September 2015.”

I must say that I was ecstatic to be told that our treatment is ‘interesting’ – like many of you, I’ve been 1. frowned at for suggesting Oxytocin is required and 2. Regarded warily when I declare with such passion that it has TRANSFORMED Hana’s life. Instead – a very high profile Professor has said it’s ‘interesting.’ Ha! Recognition!

4. Other readers are pushing, asking and planting seeds of interest in the Medical Community. I know of three doctors that after being asked to prescribe it, have agreed to test for Oxytocin Deficiency. Although I don’t believe ‘testing’ for Oxytocin deficiency is necessarily helpful (Oxytocin is pulsatile – released in happy, huggy moments) the fact they have agreed to ‘look into it’ is so promising. Change is on the horizon!

5. Other readers are coming forth and sharing some fascinating stories – all point to the Heart Shaped Oxytocin gap in Hormone Replacement Therapy:

Check out Tanya’s comments:

“My attention was drawn to your blogs especially because of Hana’s emotional wellbeing and overall motivation + bonding experiences with the family. Very slowly over time I have ‘felt’ like there was something VERY missing. And after some hormone changes and coming off another drug last year I noticed that there is a huge ‘maw’ or gap in my emotional, plus social behaviour, self esteem, general wellbeing and ability to fulfil every day tasks.

In the journals you have surrounding Hana’s behaviour with people without oxytocin it is pretty much the same for myself. I have a hard time connecting to the ‘experience’ of bonding with people. I can ‘feel’ to an extent, but there is no bridge or gap to connect to what that person is feeling. I may feel a sense of emotion from another person’s experience, but I am not sure ‘how’ to feel it if that makes sense? It ‘feels’ like a lack of sensory problem that has only worsened over time.

I sometimes have a hard time interacting with the emotions of my children. This has been the biggest impact for me and clearly the most disturbing. Of all the people that we have in our life, our children need to see our emotions and also emotional wellbeing and quite clearly the kids haven’t seen that in me for a very long time. I am looking forward to discussing options with Dr Hart and I will be letting my current Endocrinologist know that way he can monitor my other hormone levels. I’m no longer shy about it. It has to be done. Not just for my kids, but also for myself. I will let you know how it goes.”

6. And here are the experiences of Carol who is now trying Oxytocin for her daughter: 

“She feels better after 60 days on Oxytocin nasal spray. The only thing we could find was one source in the US. ABC Pharmaceuticals. We really don’t know if it is legitimate Oxytocin but we decided to try it anyway, with support from her Endocrinologist who said she is not able to prescribe it at this time but supported us trying what we could find online. One thing my daughter noticed right away after a short time taking Oxytocin was her skin seemed to heal much faster than usual.” (Hey it’s Nurse Naomi here, check out this to see why this skin healing speed could be improving on Oxytocin!)

“Previously if she got a small nick or cut it would take such a long time to heal, she seems to be healing much faster post Oxytocin use.
The situation you observed with your daughter and her relationship with her younger sister post surgery sounded eerily familiar. My daughter’s relationship with her younger brother- and her friends at the time- changed immediately after her surgery. At the time I thought it was the trauma of the surgery, hospitalization and rapid changes in her body. Many years later my daughter is a lovely young woman, but her social relationships have been a struggle, she doesn’t seem to be able to obtain that closeness with people that I just take for granted with my friends. It is hard to tell but I do think that she is feeling a bit more connected with Oxytocin use. We are convinced enough to re-order after the first 60 day trial.”

How interesting is all of that? Can you believe that thanks to all of you for talking, believing and for sharing my handful of Oxytocin posts amongst yourselves and with your doctors, that the future treatment of Pituitary patients could actually evolve? Can you believe that WE might move science forward together? Amazing!

Thanks for reading! More on my daughters journey post Brain Tumour here…and remember to check in with me on Facebook – daily updates are shared there! xx

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  3 comments for ““If Science Won’t Move for You: MOVE Science!” Oxytocin and how YOU are Moving Science!

  1. Marisa Kowalski
    November 23, 2014 at 10:38 am

    Hello Naomi,

    I have a son, Jakub, who is now 9 years old. He was diagnosed with craniopharyngioma the size of an egg when he was 5. He has had a craniotomy to remove the tumor and radiotherapy to destroy regrowth.

    We too have weight issues and are constantly working out ways to manage the food and hunger.

    I have just recently been researching Oxytocin, and was wondering if it was here in Australia. As most adds for it seem to be in the US. I am very interested in your results and will definitely be talking to our doctors about this.

    I know how hard weight and the constant talking about food is to manage. One time I just let Jakub eat whatever he wanted, he ate so much that he made himself sick, I just couldn’t keep battling with him. He thought I was being cruel by managing what he ate, but after he was sick I explained that his mind doesn’t know when his tummy is full, so I manage his food to keep him well.

    It was awful, but now even if he is given lollies at school he brings it home. He trusts me again.

    I don’t know if you have researched food interactions with the hydrocortisone, desmopressin, or thyroxine (I haven’t researched the GH or Oxytocin yet). I noticed some big differences in his medications by fasting and avoiding certain foods at different times of the day.

    I stumbled across looking this up because my neighbor takes thyroxine and after giving birth they were unable to give her iron in the morning because it cancels out the thyroxine.

    I then started to look at what was in the cereals and breads that I was giving Jakub in the morning and found a lot of added iron. So then I looked at what else interacts with thyroxine and calcium (cows milk? ) also has an effect on the absorption of thyroxine.

    I found that Desmopressin should be given on an empty stomach and wait an hour before eating.

    So Jakub has his thyroxine, desmopressin, and hydrocortisone at 6am, then can’t have breakfast until 7.

    The hydro cortisone requires low salt (unless hot weather and sweats a lot)and low carbs diet, but needs extra potassium and calcium (but calcium at end of day otherwise cancels out thyroxine). I am still trying to work out what these two things are
    -metabolic: negative nitrogen balance due to protein catabolism, and
    -give fludrocortisone to replace minealocorticoid deficiency, increase when stress dose is also increased. (Hope your background can give me a better insight to this!)

    Based on this and my endocrinologist telling me to give Jakub less than the daily required amount of calories, I made a pretty tough diet. Similar to yours I think but only having one piece of toast in the morning (without added iron) , twice a week with a boiled egg, and no carbs at dinner just protein and salad (he doesn’t like cooked veggies ). He managed to loose a kilo on this diet in a week, but I honestly don’t think it’s a long term diet. As it would not be enough for his brain or energy for long term.

    I know that every child is different, and that every child who has a brain tumor reacts differently depending where the tumor was, but I hope that I have given you something that might help in your fight to find what your beautiful daughter needs to live the best life she can.

    I will definitely be watching your blogs and rejoicing in any findings you make.

    Regards
    Marisa

  2. Ann Benger
    March 8, 2015 at 12:35 am

    This describes my husband perfectly. He constantly argues with our family and has to be dragged to social gathering. Before dx he thrived on social contact and was a loving father. I have asked our GP about trying oxytocin to no avail and will ask at the next Endo appointment. I am wondering if it is avallable in Australia without a persription. I am very keen to try this as our home life is living hell atm.

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