Lap Band Adjustments in London! How Hana’s life has changed in 8 weeks…

Hana and I at Fairytale Farm in the Cotswolds, Oxfordshire. Thanks to Lynda for the gorgeous photo!

Hana and I at Fairytale Farm in the Cotswolds, Oxfordshire. Thanks to Lynda for the gorgeous photo!

It has now been nearly 8 weeks since Hana had her lap band surgery and I thought it was time to let you know how she is doing!

As you know from this post, we had the surgery conducted in Egypt because we were unable to find a full medical team and hospital willing to conduct this potentially life-saving procedure, in Australia.

Quick Review:

The Laprascopic Adjustable Gastric Band over another Bariatric Procedure

There were a few sceptics to the LAGB, our choice of bariatric procedure – some doctors were advising us to pursue a non—reversible sleeve gastrectomy due to the fact that Hana’s condition is ‘permanent’ as a result of her brain tumour. However my husband and I were very specific in why we chose the LAGB for Hana – there is more on why we were intent on choosing the lap band in this post here but in case this is the first time you’ve read our story, you should know that short three reasons include:

  1. It is a reversible procedure (take it out if it doesn’t work – no long term harm done) – there are no long term studies assessing the outcomes of an irreversible bariatric procedure in a child with Hana’s condition.
  2. It is a minimally invasive procedure (a day procedure in the USA, 24 hour hospital stay elsewhere and there is a very quick recovery)
  3. But my MAIN reason for wanting the lap band specifically for Hana was that according to a case report by Hermann Mueller, four adolescents who received the procedure had a remission of their ‘food focus/constant hunger.’ Aside from the life threatening aspects of Hana’s condition, it was this terrible hunger and obsession with food that was destroying Hana’s quality of life, every minute, every second the day.

We were ‘losing’ Hana…

I was watching this condition, Hypothalamic Obesity, steal my daughter’s life a little more each day, physically, emotionally, mentally: her ‘life-force’ was ebbing away, the way sand falls through your fingers.

‘This is no life. This isn’t a life…’ I’ve lost count of the number of times I’ve said this to my husband in hushed tones as Hana asked for food repeatedly, crying sometimes, even in public.

The life Hana was living was barely a half-life going by her food obsession alone. Throw in her joint pain, wheelchair dependence, sleep apnoea, physical exhaustion, myriad of metabolic consequences to the obesity and her uncomfortable ballooning body size whatever ‘life’ she had left was disappearing rapidly and I was facing the prospect of losing her to an early death in her teens unless something was done as a matter of urgency.

The Anticipated Update!

No longer Tormented by thoughts of Food…

Since the surgery, Hana has not once said “I’m thinking of food.”

For me, a heavy, suffocating darkness has lifted. For Hana, this procedure has cut her free her – like a little balloon heading to the sky – from that terrible mental, emotional and physical torment. She is the happiest she has been since she had that wretched, godforsaken tumour taken out.

This is what hope feels like…millions of balloons heading to the sky. When I wake in the morning the heaviness that sat in my belly like stones for eighteen months has gone. There isn’t a euphoria – it’s too early for that, and I’m still cautious in my expectations – but hope and a blissful sensation of peace is slowly inching over me. I don’t know if you can tell by looking at me, but I imagine you could. I feel lighter. I feel I could lie down now, look at the sky and just allow myself to breathe!

Reduced Appetite

In the UK, thanks to some awesome help from friends and friends of friends we have been able to get Hana’s band adjusted four times. At the first adjustment we found that Hana only had 2ml in the band and so began to slowly add saline at each visit. Although she has a few more adjustments to go until she should reach what legendary lap band surgeon Paul O’Brien calls ‘the green zone’ Hana already has a slightly reduced meal-time appetite on top of the remission of constant ‘thoughts of food.’

Hana has slightly smaller meals and we are working towards eliminating her morning  snack – immediately after an adjustment she doesn’t need this small snack which is encouraging. She has also virtually eliminated her need for dessert (even my healthy ones!), reaching the state of satiety much more easily than  before the band. We still need a few more adjustments over the next few weeks to achieve this ‘green zone’ (= satiety inbetween 2-3 small meals a day, ability to eat ‘normal’ food plus some slow weight loss).

Weight Loss

Hana lost four kilo’s very quickly after her surgery. After rectifying a little dehydration that has stabilised at a 3.5 kilo loss for 6 weeks even though she is eating decent sized meals and some days a morning snack – this is interesting because before the procedure she would still be gaining weight with this diet due to her neurological ‘hardwiring’ to obesity. And now we are slowly approaching the ‘green zone’  she may start to slowly lose some more weight. Right now she is on target for the predicated weight loss curve for normal adults (without Hypothalamic Obesity) who have a lap band. This may or may not continue as the predicated weight loss program is not one that takes Hypothalamic Obesity into consideration. Although I’m excited to see if there will be further weight loss, as I’ve said before, even if there is none what we have gained so far (VERY slow loss/stabilisation and remission of the food focus) is enough to transform Hana’s quality of life and ours and we are grateful for that result alone.

Hana is also moving better and going for admirable distances without her wheelchair! She actually asked to go for evening walks most evenings in the UK, this is a different girl to the Hana who couldn’t even stand in the lift to get down to our swimming pool in Sydney. Maybe because she is happier and therefore happier to ‘move?’ Or maybe because her body has had a break from gaining 1KG a week for the first time in a year and a half? It is beautiful.

And Next:

We have just flown back to Cairo for another month or so and will head back to Australia at the start of September. I’m still not ready to go back, just not ready to face the place we suffered so much in for so long, but come September I think I’ll be feeling stronger and ready to start afresh, in Spring, a new beginning for us all..?

Thanks for catching up with me, if this is the first time you’ve read our story you’ll find the rest of Hana’s journey under Brain Tumour…don’t forget to connect with me on Facebook, I also share updates from Nurse Naomi Press there too. 

 

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  4 comments for “Lap Band Adjustments in London! How Hana’s life has changed in 8 weeks…

  1. Leigh
    August 1, 2015 at 7:28 pm

    Fabulous news Naomi. Those changes in Hana in such a short period of time are wonderful. I hope more positive changes continue for you all. I love the image of millions of balloons heading up to the sky. You are right about quality of life, any improvement in that, be it large or small, is what we are all aiming for. I look forward to reading your updates, they are part of my hope and help me to keep fighting xoxo

  2. Andrew
    August 2, 2015 at 1:47 am

    So happy some progress is being made.

  3. sarah
    August 3, 2015 at 1:53 pm

    Naomi, hi, can you explain this ‘neurological hardwiring for obesity’? Are you referring to the metabolic damage? Our endo has said our guys are permanently damaged in their metabolic function.. is that what you mean?

    • Naomi R Cook
      August 4, 2015 at 4:56 am

      Yes – they don’t fully understand the mechanisms of HO yet but one causative factor in the relentless weight gain is thought to be neural-hormonal disruption due to Hypothalamic disturbance. So one theory is that there is ‘disinhibited’ vagal (vagus nerve) activity – this can lead to excessive secretion of insulin (hyperinsulinemia). Insulin stimulates the appetite and facilities fat storage. Similarly it is thought that strong vagal tone reduces hormones such as adrenalin and noradrenalin which are ‘fat burning’. This is why many Cranio’s are put on Ritalin and Adderall.

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