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TrinewB

Hypothalamic Obesity Help please

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Hey mate,

 

It's hard when we have our own lives to lead and I admit your daughter had slipped my mind.

 

Your post in about racing at Kurnell reminded me.

 

How are things going?

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Hey mate,

 

It's hard when we have our own lives to lead and I admit your daughter had slipped my mind.

 

Your post in about racing at Kurnell reminded me.

 

How are things going?

Thanks for asking. Unfortunately we are still searching for a solution. She is now at 47 kg from 21 kg in January. We need to use a wheelchair now as her poor knees and ankles can't cope with the weight. Also was diagnosed with sleep apnea. We had tonsils out two weeks ago.

 

We are trying two drugs under the supervision of a US expert ATM because no one in Oz wanted to do it but so far doesn't look too promising. Next step may Bariatric surgery.

 

Not been a good 2014 hoping 2015 will bring something better.

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I'd love to be able to offer something besides good wishes but I can't imagine what. Rest assured there's plenty of people thinking of you and your family and hoping for a successful treatment.

Edited by trinube
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Damn sorry to hear. Check out everything Robert Lustig has said or written on it. Seems to be ahead of the Aussie specialists on this issue - it's what dragged him into being one of the world's best obesiologists.

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Damn sorry to hear. Check out everything Robert Lustig has said or written on it. Seems to be ahead of the Aussie specialists on this issue - it's what dragged him into being one of the world's best obesiologists.

Yeah we have been in touch with him he cannot believe the Aussie specialists were denying she even had a hypothalamic obesity. We have read his studies and trying one of the drugs he advised. So far though it's had the opposite effect :-(

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Hi TrinewB, not sure you want this old topic to be brought up but I just read your daughter's story in yesterday's paper. I really hope things will go the right way from now on!

 

For those who haven;t seen it:

http://www.essentialkids.com.au/health/latest-health-news/obese-7yearold-from-sydney-travelled-to-egypt-for-lifesaving-surgery-20150629-gi0idm.html

 

All the best!

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Hana's story will be featured tomorrow on Channel 7's Sunday Night for those of you who were following her progress.

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Hana's story will be featured tomorrow on Channel 7's Sunday Night for those of you who were following her progress.

 

I missed this, can it been seen online anywhere?

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I would imagine it will be available on sevens catch up service. Have a few tissues ready.
These stories are hard enough to watch when any kids are involved, but when you know the people involved it's so much worse.

Good luck Nour, Naomi and girls

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Just watched Hana's story. While I was looking for answers to chronic pain, I read about Dr Kahns work in a book by Norman Doidge called 'The Brains Way of Healing'. I believe this and some of the other 'left field' treatments about re-wiring the neural pathways have real potential. I hope Hana gets good results with the cold laser therapy. Like you said (like I found), the ideas of Australian medicos were pretty limited in some areas - almost bordering on dis-interest. You get to a stage where you have to go seeking answers for your self. Hang in there TrinewB.

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Hana's story will be featured tomorrow on Channel 7's Sunday Night for those of you who were following her progress.

 

Thanks mate, I'm glad I watched it. You've got some beautiful girls there!

 

Good luck with it all, hope things continue to improve.

 

If there's anything I can do (apart from teaching you how to ride a mountain bike) then let me know.

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I think it can be seen on the above link

 

Thank you all for the well wishes and messages we've been overwhelmed by the outpoor of love and support

 

Channel 7 did a good job we were nervous about how they may portray Hana and us.

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Nice story, I have the greatest respect for what you're doing and for the bravery she's showing. I wish all the best to the entire family.

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Nice story, I have the greatest respect for what you're doing and for the bravery she's showing. I wish all the best to the entire family.

Thanks mate

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Holy shit mate, just watched this. Really puts things in perspective.you seem like such a great family, really hoping the best for Hana and yourselves. Thoughts from across the miles to you all.

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We are all thinking of you. We are so proud of all of your family, coping with set backs. Stay positive, enjoy the things you can and keep those wonderful smiles going. I will hug my family tonight. You have shown us how life is fragile but also how love is the glue that binds.

 

Mick

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Hang in there mate, I think everyone's on Hana's side - remarkable little girl.

 

 

We are all thinking of you. We are so proud of all of your family, coping with set backs. Stay positive, enjoy the things you can and keep those wonderful smiles going. I will hug my family tonight. You have shown us how life is fragile but also how love is the glue that binds.

 

Mick

 

Thanks guys we're very touched by the outpour of love and support we've received over the last few weeks.

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I just read the last article. My thoughts are with you all. I hate it when kids are sick, but I love their strength in dealing with it! I guess us adults could learn a lesson or two :)

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Hi Guys, been a while since I posted here. life was busy and certainly lost a bit of my triathlon mojo.

My wife has put her journey with our little Hana over the past 4 years in a book. I know some of you have been very closely following and supporting us through this difficult journey.

check out her book trailer and please support it! she's put her heart into it. Both of them Hana and my wife Naomi are my heroes. 

https://www.youtube.com/watch?v=cw8jSdMf_i0&t=21s

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