My Daughter’s Obesity: One year after the War began.

IMG_0362One thing is for sure: we’re still losing the battle…but we aren’t giving up.

Hana’s Hypothalamic Obesity…

Hana hit 51.4 KG this week. So she’s gone from 21.4 KG January 2014, to 51.4 KG in just over 12months. Can you imagine what that must be doing to her body on the insides? It makes me feel sick to think about her liver, her heart and the threat of Type 2 Diabetes looming on the horizon. She had an oral glucose tolerance test a few months ago and this showed that her body churns out enormous levels of Insulin – both fasting and with glucose stimulation. What this means is that her brain is stimulating her Vagus Nerve – which connects to her Pancreas – to constantly pump insulin. This contributes to her sensation of constant hunger but high levels of insulin can also cause weight gain, brain fog and irritability. This is known as ‘Hyperinsulinemia’ and it is a frequent fall out of the Craniopharyngioma brain tumour so I wasn’t surprised to see her levels, the numbers themselves were the serology evidence to what we observe every day: She has brain damage. But this constant churning out of insulin will ultimately lead to fatigue in the beta-islet (insulin producing) cells of her pancreas and she will develop diabetes, it is inevitable, especially when combined with her obesity – I wouldn’t be surprised if that happens this year. You wouldn’t believe that she lives on salad, lentil soup, vegetables and cashew nuts, her diet is so clean and healthy yet she is punished for every mouthful she takes by further, completely unreasonable, weight gain.

Cruel Suffering…

She’s so outrageously beautiful…but her tiny body is just morphing beyond recognition. I forced myself to look through family photos of our last holiday together three months before she was diagnosed last year: It’s a different child. She even has a different voice. Then I dragged my eyes over more recent shots of her: wired up at her sleep study, sitting in her wheelchair tormented with an all-consuming hunger and in so much pain – it all showed in her eyes, that deep suffering she experiences EVERY DAY. Actually – the emotion that I got from her eyes in one particular photo of her at her sleep study was betrayal. She was suffering so much she was emanating a sense of betrayal. How could my husband and I let this happen to her? And then flowed guilt (more guilt) that this should happen to my daughter – and not to me. That it is her childhood and her life that is being snatched from her and all I do is stand by and watch from the sturdy viewpoint of my own healthy, strong body. It is a something like a cruel joke that I can move about so easily with my athletic, triathlon trained body, run 12KM without even thinking about it, leap around the lounge with my skinny, leggy four year old  who doesn’t walk but skips every where like a gazelle or mountain goat. And Hana looks on at us with eyes full of pain, suffering and betrayal. It is just so unbearably unjust that her one chance at life is being screwed and ruined by this condition that modern medicine has no fricken idea how to treat let alone cure.

And now, more so than ever, she gets stared at in her wheelchair wherever we go. We’ve had the wheelchair for some time and this made people ‘look’ but now she is becoming so much bigger…people stare more now. They don’t mean anything nasty by looking – she just catches people’s eyes now more than before. Kids look at her confused at her ‘different’ she looks and they tug the arms of their parents ‘Why is that girl in that?’  I just switch off and disconnect myself from everything and everyone around me and try to insulate myself in my own world, pretend that I can’t see or notice the looks around me. Sometimes I have to disconnect myself with my own thoughts and just pretend that this isn’t real.

Can this really be happening? Is this really real? I ask myself that every day as she gets off the weighing scales or whispers that she can’t stop thinking of food. Again. ‘I hate thinking of food.’ I would do anything for that feeling of hunger to leave her alone, once and for all.

The worst times are late at night, or if I wake up in the middle of the night – the darkness makes my fears so much worse, it’s like that shadow that hangs over us in the day is there full bodied at night – terrorising me about my daughter’s fate. What the hell is going to happen to her? And can I stop it? I won’t stop trying of course, I won’t stop trying until I die.

Drugs

We tried the injection drug Octreotide on two occasions – both times it paradoxically increased her appetite rather than subduing it, and it did not facilitate any weight loss during those periods. However, we will need to try it again to rule it out for once and for all. It’s not the nicest drug on the planet as there are other side effects too, and at a whopping  $1,400 for a weeks supply, it isn’t kind to the bank balance either (Octreotide isn’t available on the PBS here for Hypothalamic Obesity…yep, lucky us).

Then there is Ritalin, we’ve had some stints on that but have had to come off it a couple of times as we’ve been adjusting Hana’s thyroid meds – she went a little ‘hyper-thyroid’ over Christmas which made her heart rate very elevated. Ritalin isn’t good for Hana’s overall mood and sense of well-being, it makes her emotionally labile and moody. She doesn’t need it for energy either as her energy levels and ability to concentrate are very good – she frequently does mental maths ‘just for fun.’ The main use is to see if it elevates her metabolism a little – but certainly at the lower dose it had no impact on her constant sensation of hunger.

These drugs are not miracle solutions – we never thought they would be (and no one said they would be) but we’d hoped for a more positive impact that the one we’ve observed so far.

Bariatrics

We still don’t know whether anyone will conduct a bariatric procedure on Hana. The plan was to try the Vagal Bloc and we had found someone willing to consider this – which was amazing. However, we can’t get around the MRI issue (the Vagal Bloc is contraindicated in MRIs) which Hana still needs them once or twice a year. We are also aware that some studies on bariatric procedures often show total weight gain after a while – for this reason we’d prefer to consider a reversible procedure such as a lap band…if the effects of a bariatric procedure will ultimately ‘wear off’ at least the device could be removed and then we’d be back to square one again, of course.

What Next?

I’m not sure yet how this year will pan out – once we’ve fully tried out the drugs and either seen success (hmmm) or finally ruled them out, if the weight gain continues to not stabilise then we will definitely pursue a reversible bariatric procedure such as a lap band. If only she could just stabilise. Whatever weight her brain has now hard-wired her body to reach is too high for her to sustain, and it is getting more deadly with each kilo she gains. Speaking of which: I need to organise a liver scan and echocardiogram to check out what’s happening on the inside. Of course there are some other things we are still trying – including homeopathy – but we don’t appear to be close to finding an acceptable solution yet, neither in the form of a cure nor an acceptable long term ‘treatment’ for her condition.

IMG_0252

Hana on a recent trip to the Art Gallery pondering how easy it would be to replicate this pink masterpiece.

On the bright side…

Hana is much happier in herself these days. She has energy, she swims laps twice a day (before and after school), she plays with her sister, sings and enjoys playing with me again to0. She is spending less and less time with her pens and colouring and more time with the rest of the family. We have got a little more of ‘Hana’ back recently and I keeping holding on to that. Plus, even though the weight is still piling on she is mobilising quite well – thanks to some excellent Occupational Therapy. Her ankle and knee pain has also decreased with a new homeopathic remedy ‘Phos Ac’ at the 200c potency and it’s been awesome to see her get in to the swimming pool without crying with pain as she goes down the steps.

I’ll keep you updated as things progress – hoping to hear back about the Oxytocin case study soon too. In case it’s your first time here, you can read more about my journey as a Nurse turned Consumer after my little girl’s diagnosis with a Brain Tumour here. And just so you know, I usually update my Facebook Page daily, I’d love to ‘see’ you there.

 

 

Advertisements

  17 comments for “My Daughter’s Obesity: One year after the War began.

  1. Leesa Saunders
    February 4, 2015 at 2:43 am

    So well written and so honest. I love following your blogs. So much love to you. Xx

    Sent from my iphone

    >

  2. Maha Mourad
    February 6, 2015 at 9:56 am

    My Dear Naomi, my admiration to your fighting spirit as a mother and seeing you holding a firm grip on your family , I know you will NOT LET Go, making Hana and Mimi as healthy AND HAPPY as you can is one hell of a job, GOD BLESS YOU ALL, my dearest,
    Maha😍😍😍😍😍😍😍😍😘😘😘😘😘😘😘😘😘😘😘😘😘😘😘😘😘😘😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍

  3. Carol Johnson
    February 7, 2015 at 3:34 am

    I so sorry for all the pain your family has had to endure. My daughter will be staring a new medication in May and I will share her experience with you in case in some way it can help your beautiful daughter.
    Best wishes,
    Carol Johnson
    Sent from my phone

    >

  4. Jess
    March 16, 2015 at 9:30 pm

    I just saw you on sunrise Naomi. Your daughter is just beautiful. I pray that you both stay strong and get through this tough time, you are doing an amazing job! xxx

    • Naomi R Cook
      March 18, 2015 at 8:43 am

      Thank you so much Jess for these kind words and for stopping by here to read about our journey x

  5. Nikki Brown
    March 16, 2015 at 9:34 pm

    Hi there I had a thought. I’m training to be a hypnotherapist. Why don’t you try hypnotherapy and hypnotherapy CDs with built in sleep spindles for weight loss. Retrain her brain (which can be done) to switch off what has become faulty. She can have a script in Hymothrapy that reads something like, “your body is nourished with food at every meal time, you feel full at meal time and don’t feel the urge to eat more than what you need”
    You can also have gastric band placed during hypnotherapy.

    • Naomi R Cook
      March 18, 2015 at 8:43 am

      Yes! We have looked into this and we were about to proceed but then we had issues with the hypnotherapist. Thanks for reminding me about this! I will definitely pursue this.

  6. DONNA
    March 16, 2015 at 9:46 pm

    Sorry to hear of your sad story… I lost my son to a bone marrow failure in october… I hope you never experience my pain or sadness… Taylor was 17 & 7months when he passed away..

    You might like to reasearch afruit extract called garcinia… its suppost to stop your body from absorbing fat… there are suppost to be no side effect
    Also green coffee bean extract is suppost to boost metabolism…
    Print out the information on both and present it to your doctor…. its worth a try

    Best of luck

  7. March 17, 2015 at 9:30 pm

    Reblogged this on lyndarenham and commented:
    There are no words to express how we feel…

  8. Sree
    March 18, 2015 at 4:02 am

    Cashew nuts is definitely BIG NO NO !!!!. Its so high in Saturated fat !!! .
    Also avoid , prunes , raisins(sultanas) , figs , Dates , , all sugary. Other worst nuts are pecans peanuts( though high in folate- they do more bad than good, a fist full is enough to destroy thyroid) , macadamia

    Never roast nuts or buy roasted

    Substitute it with organic pumkin seeds with outer green cover and
    organic almonds ( few )
    organic walnuts ,
    Organic Brazil nut ( 1 or 2 per day for a child),
    very few unsalted organic pistachios

    • Sree
      March 18, 2015 at 7:49 am

      always check for nut allergies. Limit the quantity of nuts.Best to gives boiled okra , boiled carrot with tomato with few soaked chia seeds sprinkled

      • March 20, 2015 at 9:39 am

        I strongly feel Pranic Healing can work to induce sleep , control hunger. , improve the central nervous system . I see there is NSW Pranic Healing center whom you can contact .

        You too can learn it too ( will be handy ), whenever Hana feels pain , you can cure her in minutes, help her sleep well , reduce her cravings . A trained Professional can do cleansing daily and improve overall health

  9. Jane Thorne
    March 18, 2015 at 10:15 am

    Love flowing to Hana and to you all, huge hugs Naomi…. Xxxxxx

  10. Sree
    March 20, 2015 at 9:53 am

    I strongly feel you should try Pranic Healing for these reasons
    1. Advanced Pranic healing can cure problems of central nervous system , improve brain functions, gastro intestinal tract and endocrine glands
    2. Can Help control hunger
    3. Is very useful for sleep disorders . You should ensure Hana gets undisturbed sleep at night.Max weight loss happens during sleep.
    4. Cures pain in minutes

    I searched and saw there is NSW Pranic healing center which offer courses and also has a team of professionals from their site. I think you should ring them up and explain about the problem. Daily cleansing by Professional can definitely help to alleviate all problems.

    You too can learn. It will be very handy for you to cleanse Hana daily and improve all her body functions.

  11. Honeypie GB
    March 26, 2015 at 1:34 am

    Will pray for your daughter and your family!! Keep the faith! 🙂

  12. Justin Young
    April 8, 2015 at 10:05 am

    More power to you Naomi I hope your enthusiasm will make the medical system sit up and take notice. Research and effective treatment for hypothalamic sufferers is so lacking. I wish Kate and I had addressed many of these issues with our Timothy when he was first diagnosed as we were initially well out of our depth.
    Justin and Katrina Young (Tim’s parents)

    • Naomi R Cook
      April 8, 2015 at 9:57 pm

      Of course you were out of your depth – what parents go through post Craniopharyngioma is monumental. What is so sad is the apathy from the medical system when kids start demonstrating signs of hypothalamic damage. ‘Nothing can be done’ – ‘You’ll have to get used to it.’ Horrid, horrid things to say to a parent facing the prospect of observing their child suffer for the rest of their lives! No! I think of you and Katrina a lot, and also Tim. If Hana does well after her lap band, I hope that we can start to change the approach to childhood morbid obesity post Craniopharyngioma. This something I want to work towards.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: