What is it like living with someone with hyperphagia? I often wonder if people want to ask this when I tell them that my daughter Hana, has extreme hunger after the removal of her brain tumour. This post may give some insight to this…It isn’t pretty. It does not mimic my mental state, particularly right now as things have changed – for the better, but captures moments over the past six months that I feel should be shared. I want understanding for these beautiful survivors and what they face daily and I want understanding for me and parents like me who like me who have been forced to change, to metamorphose, alongside their little warriors.
Since my daughter’s brain tumour was removed I’ve had to listen to her scream for food.
I’ve had to watch her hit and scratch herself in frustration that it wasn’t time to eat.
I’ve let her hit me as a way to vent her fury at not being allowed to eat.
I’ve watched her face, dull and empty as she accepts the fact she can’t eat for another half and hour, or another two hours.
I’ve wiped streams of tears off her cheek at night as she’s gone to bed crying for food.
I’ve wiped streams of tears off her cheeks a hundred times a day when the hunger that possesses her every waking thought gets too much to bear. And she weeps.
‘When’s it my snack time?’
‘I’m getting REALLY hungry.’
‘My tummy is saying it’s hungry already.’
‘I don’t like being hungry all the time.’
‘How long now?’
‘I want to EAT! EAT! EAT!’
Then the house is filled with sobs so loud they hurt my ears. Sobs that rise from the depths of her soul; rich, deep, despairing. My youngest daughter reaches for me, scared Hana will hit me again. She places her hands over her ears, her face worried and pale. Hana’s cries cause a steel-like pain in my gut. I want to shut them off, stop hearing it. Say it isn’t happening. This ISN’T my life. Her pain hurts me so much more than it hurts her. The agony knowing I can’t take it away from her, wear it myself – it’s shredding me. I hang like a threadbare, torn blanket billowing in gale force winds. Weakened, a colourless whisper of what it was. This is no life…It whispers around me, ugly and full of hate. This is no life...
‘I hate being hungry all the time. I hate having a brain tumour. I hate being hungry all the time, I hate having a brain tumour.’
The early days were black and relentless, hyperphagia coupled with short term memory loss meant Hana couldn’t even try and be reasonable about her meals and snacks. She’d eat a big meal and then promptly forget it ten minutes later. ‘You’ve just eaten a huge bowl of rice and soup!’ ‘I don’t remember,’ she’d say flatly. Bluntly. The pressure in me built up and up like steam in a pressure cooker, suddenly erupting in crazed, unpredictable screams I couldn’t hold back. My fingers raking the floor, tearing my nails to bloodied shreds that I wouldn’t notice until hours later, the stinging pain they caused a trifle in comparison to the gunshot wound in my heart.
Yes. I know it’s hard to read. There are so many others reading this who’ve been to that dark, rank place. Twisted joy and bitterness; she lives… yet look at the life she leads?
‘What’s the time?’
‘Mummy, what’s the time?’
Her day is one that revolves around food, meals or snacks. Her first waking thought is breakfast when can she eat it? She has to have her morning medications as soon as she wakes, then she has to wait 45 minutes until she can eat so they are properly absorbed. This 45 minute period is frequently very difficult for her. Questions around when she can eat increase in frequency every 5 minutes. I repeat myself like a parrot. Then after she’s eaten she is usually OK for an hour to 1.5 hours but after that period the asking begins again. On a couple of occasions she’s been sleeping then shot up in bed, eyes wide and staring although she is still asleep, saying loudly, panicked, ‘I want food!‘ even in her sleep she is tormented by thoughts of food. The first thing she often says after her lunchtime nap is ‘I’m hungry.’ When I walk through the door after a run or a swim there is rarely a ‘Hello,’ it’s ‘Mummy I’m REALLY hungry.’ She is excited, happiest when it is time to eat. She shows the most affection to me and her sister when it is time to eat. Once the meal is over she will frequently withdraw again.
But things are better now; Here’s why:
Homeopathy curbed her hunger
Without a doubt Homeopathy helped curb her hunger substantially, it gave us the first blissful window of non-food preoccupation between 3-7pm. It allowed me to cook the evening meal in peace, without her sitting at the table angry that dinner wasn’t yet ready, hurrying me as I scampered around the kitchen, a slave to her appetite. Since we started the homeopathy Hana has not once gone to bed hungry or in tears about food and overall it has reduced her hyperphagia more to ‘very hungry.’ Of course, she has better and worse days even with homeopathy, but overall I am flabbergasted by the positive changes I’ve seen. I still haven’t fully explored the full capacity of homeopathy’s potential to further reduce this, so this is one thing to be encouraged and excited about (read this post to find out about the remedy that helped reduce Hana’s hunger). BUT, homeopathy isn’t enough – especially when there is more to the story: Hana’s inadequate hormone replacement.
Is Oxytocin a Cure? Watch and we will soon see…
As far as I know, Hana is the only child in the world who is taking this hormone for appetite, weight regulation and emotional wellbeing. The finding of this potential cure happened entirely by chance, see ‘WOW! Is this a cure for my Daughter’s Obesity and Extreme Hunger?’ and ‘My Daughter’ NEEDS Oxytocin after her Craniopharyngioma brain tumour. But why isn’t she getting it?’. Which led me to start a campaign:A Plea to Scientists around the World: Please Study Oxytocin for Brain Tumour Survivors.
I am documenting everything I obeseve about Hana’s reaction to the hormone which we started administering a few weeks ago, this is what happened during the First Week. I have great hopes that this hormone will act as a cure – even if just a partial one – if not for Hana’s hunger and obesity then for her overall mental and emotional wellness. And if Oxytocin isn’t the final piece of the puzzle in my quest to heal her brain, I know I am one step closer to finding it.