A few days after the first part of our Oxytocin trial ended (read this to find out what happened!), I noticed something: Oxytocin reduced some of Hana’s obsessional behaviours, but it was only once these behaviours returned that I attributed this to the Oxytocin:
Pens: Counting and Colour Coding
Shortly after my daughter had her brain tumour removed earlier this year she became very obsessive about her pens.
Her pens (which were over a hundred) had to be meticulously sorted into strict colour coded groups every night on the floor, then returned to the table after dinner, in their groups ready for the morning.
They had to be placed in development of shades back into their cases numerous times a day.
They had to be counted every evening. She wouldn’t get into the bath until she’d counted every one.
She wouldn’t let anyone borrow her pens, and began to get iffy about people touching them. Hmmm,this was beginning to smell a bit OCDish-
At first I was pleased she had something to do, something that distracted her from food and her hunger. Then it began to get frustrating, tidying away her pens for and after every appointment in colour shades was time consuming. I voiced my concerns to a psychologist, I suggested that this new habit might have occurred because she was lacking the intellectual stimulation from school, that her bored brain, unable concentrate or focus much after the surgery had needed to ‘invent’ an alternative activity to stay interested. But she said that it may just be a task that Hana felt was achievable and therefore fun to do. I decided not to worry about it, but I was growing concerned at how Hana was unable to move onto a different activity before finishing the pens one.
‘I can’t play with you after the bath Mimi cos I need to count my pens!’ she’d inform her sister.
So I’d say, ‘Why don’t you count your pens after dinner?’
‘No because that’s when I have to bring them all to the table ready for the morning time.’
‘Why don’t you put them on the table in the morning instead?’
‘No. That would just waste time.’
Then we started Oxytocin – which is a massive story in itself, check out the following links for why and how we did that:
Magic effects of Oxytocin on OCD?
Two days into the Oxyotcin, Hana wanted to get into the bath with her sister, ‘But I haven’t sorted out my pens yet!’ She wailed, suddenly remembering.
‘I know!’ I said, (let’s see if she buys this I thought to myself!), ‘Why don’t we just select two types of pens, keep them in their cases for once! That way you don’t have to sort them, count them AND they’d be ready for you in the morning!!!!!’
‘YEAAAAAH!’ She grins, like I’ve had the best idea EVER.
I can’t believe it! I thought, seriously?
And for the next 5 days, during and immediately after the first Oxytocin trial, she was happy to leave her pens in their cases, and didn’t feel obliged to count and sort them. One week post Oxytocin, waiting for our lower dose spray to arrive so we can re-start and lo and behold the obsessive pen sorting and counting behaviours have returned. Interesting.
Other OCDish things post Craniopharyngioma
Hana has also developed some other odd obsessional type habits since her surgery. She randomly counts her fingers, she tends to draw patterns and shapes repetitively – sometimes finishing them, often leaving them, she also has this new bizarre ritual when sorting out her puzzle pieces which is really restrictive and doesn’t make sense to me. Hana has always been very routined focused relatively rigid but these behaviours have been exacerbated by the removal of her tumour and she finds it very hard now to ‘think outside of the box’. It’s also interesting to bear in mind that Hana’s tumour had been growing for years, most certainly impacting on her even though we hadn’t noticed. What is there of her character, her behaviour, her personality that isn’t, wasn’t altered by her tumour? We’ll never know what sort of person she would be if she hadn’t had a Craniopharyngioma.
There was a thread on the Cranio Facebook page a while back about kids developing ODC style behaviours with/post brain tumour and I began to wonder: Could obsessive tendencies in Craniopharyngioma survivors relate to low or absent levels of Oxytocin? This question is even more interesting to ask if you consider that Oxytocin has been trialled in Autistic children in whom Oxytocin levels are thought to low. Interesting too if you consider the studies that effectively used Oxytocin in subjects with Anorexia Nervosa. Anorexia is an illness that is also characterised by obsessive, ritualistic behaviours.
We have just started re-trialling Oxytocin this week – at lower dose to see if the thirst mechanism is as strongly activated – I’ll be blogging the results of this next week, so stay tuned. Remember there is more about our Brain Tumour Journey here, and I also update my Facebook Page every day. Thanks for reading, please leave a comment below, I’d love to hear from you.