Just over a year ago I bundled my very unwell, morbidly obese, wheelchair bound little girl on to an aeroplane for medical help I just couldn’t get here in Australia.
For months my husband and I had been battling to be seen and heard by specialists here – her post brain tumour, unrelenting weight gain was a threat to her life, yet it our pleas for help were either dismissed or disregarded (“nothing can be done”). See here for some of the crazy conversations we’d wait weeks or months for – when we were proposing bariatric intervention.
Hana was gaining an intractable kilo a week in spite of a strict diet and exercise regime – this is typical of hypothalamic obesity, a rare and relentless condition that leads to extreme appetite yet in the face of dietary restriction – rapid and unrelenting weight gain.
My husband and I researched all the treatments successful and unsuccessful described in the medical journals and we were armed with knowledge for each subsequent specialist appointment we’d wait weeks for (each week = +1KG of weight).
Our choice to get a lap band over any other type of bariatric surgery was that 1. It it a minimally invasive procedure 2. It is reversible 3. the biggest reason, the ONE longitudinal study that looked at LAGB in the HO population found that the lap had a significant impact on food focus/hunger. Because Hana’s hunger was tormenting her and destroying her quality of life, getting the lap purely to reduce that symptom was reason enough for my husband and I. However, we also hoped desperately that the lap band would either 1. stabilise her weight 2. Enable her to lose weight.
But how would the lap band work if she wasn’t overeating in the first place?
That’s what a lot of people ask – it seems weird that if Hana wasn’t overeating, how would the lap band enable her to lose weight when it’s primary focus is to reduce food intake?
The answer to that is unknown and it is postulated that the presence of the band over the vagus nerve leads to neuro-hormonal changes which impacts on weight. The study that we had found and that was the only study that had given us hope (see Herman Muller) highlighted that the group initially lost weight but then regained their lost weight, however the reduction in appetite and relationship with food stayed transformed.
Finally saying ‘enough is enough’ after a ridiculous wild goose chase for help here was the most empowering thing I’ve ever done. Ringing my dear mother in law in Egypt – who, with a click of the fingers organised the entire surgery (hospital stay, endocrinology coverage, surgeon and more – it’s possible that in a previous life she may have been an ancient Egyptian goddess) within an entire afternoon. Whereas after some movement and promises here, we had been waiting 8 weeks for a surgical date to eventualise – but it never happened. And the weight was still piling on.
‘That’s it. I’m going to Egypt,’ I told my husband one evening when ‘that’ email didn’t come through. ‘Enough is enough.’
‘Shouldn’t we wait a few weeks so I can organise some time off work to come with you?’ He said.
‘She doesn’t have time.’ I said, ‘Every week we wait is another kilo of weight that she will never lose. I’ll go alone and I’ll leave next week.’
And so, one week later I jumped on a plane with my two little girls. Not knowing what the future held, but knowing that, whatever happened, I was doing the right thing.
Effects of the Lap Band
As you know from the early lap band posts ( see how Hana’s life changed in 8 weeks) Hana initially lost some weight with the band – similar to results recorded in Muller’s study. This enabled her tiny joints to have a breather from weight gain and within four weeks she was out of her wheelchair.
But, the most remarkable transformation was the reduction of appetite – the feeling that she was starving, desperate for food went with the band. Yes, she still had a greater food focus than an average person but her thoughts were not tormented, hellishly, anymore.
And…She began to play again. My little girl was coming back to me.
One year Later
The triumph and power that we seized back by leaving Australia to get Hana treatment has remained. It cannot be undone.
Before the lap band my husband and were helpless consumers in the system, skating around doctor’s ego’s whenever necessary, me, trying to hide my passion to save my daughter in case I came across as too aggressive, (I’d already been accused of being an ‘alpha female’ to Hana’s detriment) keeping silent at c*** like this: Crazy things Doctors told me before the lap band. We felt powerless and dependant on the – ultimately poorly informed – opinions and wills of those who had no personal interest in whether my daughter lived a life a suffering and met an untimely death or if she prevailed.
The reduction in appetite and food focus still remains (and is even better as we’ve progressed with brain healing) and I can say that the band was worth placing for this reason alone. I am so, so eternally grateful to the band for this. And I’m grateful to the pioneers of the band for researching and creating it in the first place. You know after our experiences and as a result of my personal journey I have serious issues with narrowed, pharma focused ‘mainstream’ medicine but here is an example where I treasure and appreciate one of it’s fruits!
And what about her weight? After the initial loss there was a period of stabilisation and a gradual return of weight gain. However it is slower than before – I can not say ‘how’ she would be at this point if we hadn’t intervened and got her the lap band. Would she still be here?
It simply doesn’t bear thinking about.
By not accepting the status quo, I believe that we saved her life. By taking control of her care we had to leave Australia to do it: the system here lacked the passion and motivation to step up to the mark, make medical history and save my little girl. As parents this is a powerful realisation: we cradled the future and longevity of our little girl in our own hands: and in this particular instance, we succeeded.
- I am in the process of following suit with the documentation on our Oxytocin World First (my case report is now published in the Journal of Paediatric Endocrinology and Metabolism) I am writing up the results of Hana’s lap band and will submit it to a medical journal. Hana is the youngest child in the world to have a lap band and the only ‘child’ with her condition to have a lap band. The impact on her quality of life needs to be scientifically documented. In addition, the impact on her weight is extremely significant – going from gaining a kilo a week to this is something that needs to be reported and disseminated! It needs to be screamed from the mountain tops.
- Brain Healing – the only way to ‘cure’ her condition is to heal her brain and I am continuing to do this with LLLT (see this blog, and an update soon) and some other fascinating modalities which I can discuss later on.
- Positive mindset: I don’t weigh Hana any more. It isn’t edifying or helpful in our daily routine. The scales did show an increase in weight at a recent appointment but to me she is shrinking every day. She is more mobile and agile than ever before. I believe she is healing, she believes she is healing. I believe in the power of our beliefs and only choose to focus on the positive. More on that to come in a week or two too.
- Keep a close eye on blogs towards the end of the year…something big – no, not big, MASSIVE may be happening then!
‘As a man thinketh…so is he.’ Proverbs 23:7