As far as I know, at the time of publishing this post, Hana is the first and only child worldwide who is trying Oxytocin Hormone Replacement Therapy for the purposes of appetite control and for the promotion of emotional wellbeing. Hana does not produce the hormone Oxytocin from her Pituitary Gland anymore as a result of a brain tumour that was removed earlier this year. Although she still may secrete some Oxytocin directly from her Hypothalamus to surrounding brain areas, the full function of this isn’t guaranteed as she also has some hypothalamic damage. Using ‘Oxytocin Hormone Replacement Therapy’ for the particular purposes of appetite and weight control plus quality of life improvement in children and adults post brain tumour like my daughter, has not yet been studied.
A week ago I published a “plea” to the International Scientific Community, asking that someone, somewhere consider conducting a study on adults and children like my daughter who have zero Pituitary Brain Function. These people can no longer produce hormones from their Pituitary Gland, yet only a portion of these hormones – the life saving ones – are replaced by medicine. Oxytocin isn’t one of them. Although I am lucky to have a found a Doctor (Dr Hart – in Sydney) who also sees the glaring need to replace the deficient Oxytocin in Hana, many others won’t feel comfortable doing so without a clinical trial backing them which in the age of extreme litigation is understandable. For all the details on Oxytocin read these posts: ‘WOW is this a potential cure for my daughter’s obesity and extreme hunger and ?’ and ‘My daughter NEEDS Oxytocin after her Craniopharynigoma brain tumour- Why isn’t she getting it?’ and Studies on Oxytocin: A non-exhaustive list of recent studies that may be of use to Brain Tumour Survivors
Firstly, a note to the Critics…
I have been criticised for ‘doing this by myself,’ for contemplating trying something on my daughter that hasn’t yet been concluded as “efficacious” through a clinical trial. I could go into the restrictions, problems and pitfalls with clinical trials themselves but it would bore you and I don’t have time. Time is an issue for us in general, we don’t have time to wait for ‘someone’ ‘somewhere’ to decide to conduct a trial on the potential uses of Oxytocin in children like Hana. It’s a good few years into scientific exploration of the therapeutic benefits of Oxytocin in medical circumstances beyond lactation and labour yet it appears that no one has considered looking at how it might improve the quality of life in those completely deficient in the hormone, like my daughter. Every day that goes by, so does a day of my daughter’s life. Every day that passes, she gains weight and suffers from a myriad of negative symptoms. Oh, yes, one thing that medical research has established is that Craniopharyngioma survivors often suffer from a poor quality of life (here is that study).
My husband and I have taken control of the situation and decided to try and help our daughter ourselves. We DO have a supportive doctor AND we are using a well tested ‘medication’ that is replacing a natural deficit in her body. Oxytocin has been administered and tested in humans many times already, it is not an ‘unknown’ drug. According to the studies, Hana is just one of the youngest children to take it – she is 6, the youngest child I could find in the studies on Autistic children was 7.
Starting Oxytocin: What we did
Before starting I had already conducted enough research to know that Oxytocin may impact on Hana’s medication for her Diabetes Insipidus – as Oxytocin bears a similar molecular structure to Vasopressin (which is the natural antidireuctic hormone) and so I was prepared for the need to significantly reduce her daily medication of Desompressin which is the medication replacement Hana receives for missing Vasopressin.
I had a blood electrolytes request form lined up in order to test her sodium a few days into Oxytocin treatment in order to check that she wasn’t developing Hyponatremia (low blood sodium which can be life threatening).
Our prescribing Doctor, Dr Hart recommended that we assess for dosage suitability by watching for facial flushing that may be transient on administration but prolonged in the cases where Oxytocin dosage is too high. He also advised to observe levels of affectionate behaviour, Oxytocin is known as the love hormone and can increase loving/’sticky’ behaviour.
In addition, I had to keep in mind that hormones affect hormones and therefore needed to be aware that further tweaks to her other medications may be needed. To keep track of these I made list of observations I intended to keep and further my daily detailed notes on:
Weight, Waist Size, Pulse, Body Temperature
Food Preoccupation/Hunger Levels: These are currently debilitating (on average Hana asks for/mentions food every hour a day). We do have some good days, some bad, some good weeks and some bad, so we won’t be able to properly assess the impact of Oxytocin therapy for some weeks yet. I do have some ‘yardsticks’ to compare developments to.
Sodium Levels, Mood, Crying Fits, Time spent with Sister, Manner of communicating with Sister, Facial Flushing, Peripheral Circulation (I test this by feeling for hand and foot warmth as well as counting the number of seconds for capillary refill i.e pushing my finger into a finger or toe and seeing how long the ‘blanch’ occurs until blood flows back through).
Summary of first few days (Detailed Diary Below)
It’s very early to judge whether the changes we’ve seen are transient or a coincidence – time will tell, I must say that I’m very encouraged and excited by what I’ve observed over the past few days. We are reluctant to use the word ‘transformation’ but so far, a transformation is what we’ve seen.
1. We’ve noticed a mood transformation, this grey veil of depression since her surgery has lifted. She is happier, laughs more, smiles more, and there is an increased overall jolliness and chattiness. Hana has been very glum and ‘low’ since her surgery, she has only truly been ‘happy’ at mealtimes, her mood plummeting to the biggest low in the afternoons. Yet the happiness we have seen over the past four days has gone as far to impact on her motivation to swim in the afternoons. Getting her in the pool everyday has been a depressing, frustrating mission for 5 whole months! The past few days she’s been excited about swimming and has stayed in the pool actively playing! It’s been bliss to see. She has also had fewer ‘tears’ and episodes of crying, (since her surgery she has been extremely tearful and will cry at the smallest opportunity), four days of relief from this.
2. Secondly, we’ve noticed a dramatic change in the dynamics between Hana and her sister, there has been more affection, more talking and they’ve played two long imaginative games together, since her surgery 5 months ago they’ve only had played together once. Her little sister has responded to this by demonstrating more affection to Hana than she has over the past 5 months, although she isn’t conscious of it, she is clearly overjoyed at Hana’s change of character – it’s beautiful for my husband and I to observe.
3. Effect on appetite – this is too early to tell as we do have some good and some bad weeks with Hana’s hyperphagia, this could just be a ‘good week.’ On the whole, she has still asked for food at the average frequency but hasn’t complained of being ‘starving’ at all. We still haven’t brought her up to the maximum dose of x4 doses a day so we can watch and wait and see how this affects her appetite (and weight) as time goes on.
4. BUT There is definitely some water retention – around a sudden weight gain of 1KG. Hana has also had a marked thirst over the last four days which if you are on medication for Diabetes Insipidus is not a good thing as the medication prevents you from getting rid of excess fluid. Fluid build up can be very dangerous. We will do a blood test today to check for hyponatremia. The oxytocin prolonged the life of her desmopressin the first two days, but not the third. We stopped using the Oxytocin yesterday as Hana had a a headache (although she also has inflamed ear drums), just in case she was developing low blood sodiums. Once we get her sodiums back, and her headache has gone, we will re-start it, potentially at a lower dose if sodiums have been affected.
Journaled Events ‘as they happened’ for the Hardcore Readers
Day One: The First Dose
0500 I administered the first dose of Oxytocin right before Hana had her early morning ‘breakthrough’ – this is when her night dose of medication for her Diabetes Insipidus wears off. I wanted to see if the administration of Oxytocin prolonged the lifespan of her nightly dose – it didn’t but I still gave Hana a lower dose of her DI medication, her Desmopressin, so that I could carefully monitor any change in potency of this medication to reduce the risks of her developing hyponatreamia.
Hana’s dose was 5 units in one spray. She experienced a little left sided facial flushing (I gave the spray in the left nostril) and pink chin, but nothing significant. Her pulse before administration was 116, an fifteen minutes after administration it was 110. She played a game with her sister and chatted quite happily with her – which it must be said, IS a rarity nowadays but this one observation didn’t convince me it was the Oxytocin promoting sociability, it is way too early to say. Time will tell. She continued to ask for her breakfast as frequently as she normally does but made an executive decision to ‘hold off’ eating for a bit so she wouldn’t have to wait as long for morning tea. Good move Hana. Again, this is most likely a coincidence.
0815 Hana’s hands were extremely warm on the walk to school, she has suffered from poor peripheral circulation (cold hands and feet) for some weeks now so it was nice to feel them emanating warmth for a change, as Oxytocin is known to improve peripheral circulation, this was good to see.
1130 Within five hours Hana’s cheeks had paled a little although her chin was pinker than usual, and her hands had cooled down, pulse 106. Even though these observations were back at baseline by lunch, Hana did not ask for or mention lunch after a short morning nap for a 40 minute period. This is very, very, very rare. But most likely another coincidence. Quite chatty and verbally animated before lunch, very pleasant. Prolonged action of diabetes insipidus medication by a few hours, this returned to normal in the afternoon when the oxytocin wore off.
Because the half life of Oxytocin is so short, doses need to be administered frequently, four times a day. We just gave her one dose on the first day in order to ‘go slow’.
Day Two: The Second, Third and Fourth Doses
0500, First dose. Hana asked for her ‘first breakfast’ (this is usually cereal or porridge) at the normal time and with average frequency. However there was a marked change in her frequency in asking for her ‘second breakfast’ (this is a piece of toast, we split this breakfast by an hour or so usually – since we wake up at 5 a.m, waiting until morning tea/snack is too long unless breakfast is split). As she hadn’t mentioned her toast breakfast, two hours into her dose of Oxytocin I thought I’d ask her to see how she responded. Bemused, I asked at 0700, ‘Don’t you want your toast yet?’, she shook her head, ‘No, my tummy is still full from my porridge.’ This is a great rarity, I’m sure it may have happened once or twice since her surgery but I cannot recall an incident like this, she is usually desperate for her toast. Still not raising my hopes. Coincidence? Complained of a headache that comes and goes. Slight facial and right ear lobe flushing (administered in right nostril). Complains of feeling hot.
0900 Hana tells me: “Mummy, I’m not feeling very hungry right now. Which is excellent.” She has said things like this before, but extremely rarely. However she was still interested in establishing what her morning snack would be, even though she didn’t want to eat it.
0906 Hana says spontaneously “And I’m not even thinking about food in the tiniest bit.” She is sleepy and yawning, this could be the Oxytocin – but she has also had a few bad nights sleep courtesy of a growth hormone increase (gives her insomnia).
1030 After having chosen her morning tea and packed it ready for acupuncture, we decided that she would eat it in the car. Then she actually falls asleep in the car, the lunchbox in her hand. Although she has short term memory deficit, it’s rare that she would forget when I’ve told her she can eat her snack and she’d usually want to eat it right away – unable to think about anything else.
1150 Facial and ear lobe flushing has gone. Second dose administered.
1153 “Mum, it’s really good that I’m not feeling that hungry right now.” This is lunchtime. She knows we will eat quite soon, and usually around this time she asks very frequently ‘when’ we will eat and she but she is often saying she’s ‘starving.’ Coincidence? It’s a promising one.
1211 ‘My tummy is saying it’s hungry now.’ Mine too. Will see how long she goes until she asks again.
1216 ‘My tummy is getting very hungry now.’ Lunchtime then.
1500 Third dose administered. Hana is very thirsty even though she isn’t breaking through/dumping i.e her Diabetes Insipidus medication is still working and she’s not urinating large amounts. This is odd. I weigh her and she clocks up as one kilo heavier than three days ago – she’s definitely retaining water.
1530 Hana swims laps spontaneously in the swimming pool for the first time. She also plays in the shallow end for twenty minutes. She has had a few good swims post op (we swim every day) but I usually have to cajole her to get in and it’s exhausting. Today she wanted to get in. My brother looks at me with shock on his face as Hana ploughs up and down the pool. She is also quite happy and chatty, she usually struggles with low mood in the afternoons. Coincidence?
1700 Hana doesn’t complain of hunger before dinner – but as you know this time of the day has improved dramatically since we started the homeopathy. Read about that here. She looks visibly bigger to me – there is no doubt in my mind she is water retentive and she is still thirsty, I’m not happy about this. Hana plays with her sister before dinner…rarely happens. Coincidence?
1730 Hana begins to ‘dump’/’breakthrough’ – I decide to let her dump and measure urine output for a while before giving her the next dose of desmopressin but she isn’t pleased about this as she’s very thirsty. I decide not to give her the fourth dose of Oxytocin today in order to prevent more fluid retention. I also give her a homeopathic remedy ‘Nat Sulph’ which is indicated for water retention. I decide to only go for x2 doses of Oxytocin tomorrow in order to watch for the water retention.
1830 Hana and her sister play a lively game in the bedroom before bed, lots of laughter and affection. Rare. Before lights out my youngest daughter says ‘Hana I love you, you’re the best sister in the world.’ Hana replies with the old style affection she used to express ‘And you’re the best sister in the world too!’ Lots of positive coincidences today.
0500 First dose, Hana played with sister again – still not the same engaged type of play they had pre-tumour removal but the playing session definitely turned both my and my husbands’ heads. She asked for breakfast at the usual frequencies.
0830-1130 School – so hard to assess. Hana’s teacher said she complained of hunger during class. Not sure how this compared to other days as I wasn’t there to ask the teacher – my husband picked her up.
1130- Hana complained of a sore foot, there is an obvious swelling in her ankle. Is this the Oxytocin causing oedema?
1400 Second dose. Hana wants afternoon snack as much as she normally does. Action of Desmopressin medication doesn’t seem to be as long today, although her overnight dose is very low.
1500 Hana actually wants to swim again! Post op she has only wanted to swim once or twice. Every other day over the past 5 months I’ve had to beg her to get in the pool, she reluctantly does but usually only sits on her woggle. Today, like yesterday she jumps in, swims laps then begs my husband for a pretend swimming lesson. 20 minutes of happy swimming.Wow.
1700 Girls play together again. Hana’s little sister is being very affectionate to her, responding to a ‘shift’ in how Hana is treating her. No talk of hunger after 3pm until bed. Complains of headache.
1730 We determine swelling in foot may be a genetic problem with her bones called Tarsal Coalition, not necessarily the oxytocin. Watching it carefully. Made appointment for Paediatric Orthopaedic Surgeon.
0430 First dose. Hana asked for first breakfast only twice between 0430-0530, impressive.
0650 I get back from my run, one of my ‘hunger’ yardsticks is whether Hana pounces on me when I walk in. For 5 whole months, she won’t say ‘hello’ when I get back from my run but call out from whatever room she is in, saying ‘I’m hungry’. She’ll then complain of hunger until I get our toast ready together. Today she didn’t mention hunger or breakfast and while I was in the shower PLAYED an interactive, imaginative game with her sister. My husband and I are gobsmacked.
0900 Stopped Oxytocin as Hana has sore, red ear drums and a headache. Not sure if the headache is related to fluid balance so playing safe and holding off until bloods tell us more.