The Crazy Things Doctors Told Me (Pre lap band). You’ll want to bang your head against a wall.

Me and Hana at Fairytale farm, UK

Happy Early days post Lap Band. Hana and I at Fairytale Farm in the Cotswolds, Oxfordshire. Thanks to Lynda Renham for the gorgeous photo!

Pre-Lap Band Conversations – a different doctor each time. Enjoy…

Doc: “She’ll have to grow into her weight.”

Me: *Grow into a kilo every fricken week?*

 

Doc: “You’ll just have to get used to this side effect of the surgery.”

Me: *You mean the part about watching her suffer until she dies?*

 

Me: “Obviously, I’m sure you’re aware the research states that hypothalamic obesity is notoriously resistant to strict exercise and dietary  interventions-”

Doc: “-What’s she eating?”

Me: *-?*

 

Me: “She’s gaining a kilo a week…”

Doc: “What is she eating?”

Me: *Sigh. Note Photo.*  “We are primarily organic vegan, high vegetable, (low fruit even), intake  – we are very healthy eaters. My children have never tasted junk food. They don’t even know what the ‘sweets’ are at the candy counter. There is no processed food in the house.”

London 2013 World Champs

We both have Master’s Degrees as Health Care Professionals – but that didn’t seem to count for anything – the family diet was under constant scrutiny. JUST HOW HEALTHY WAS THE FOOD WE ATE AT HOME?

NOTE PHOTO.

Doc: “Well…what does she drink?”

Me: “Filtered Alkaline Water.”

Doc: “Hmmm, well the diet sounds OK, but it might be worth seeing a dietician for, you know, any loopholes.”

Me: *Bang head against the wall x5*

 

As we we leaving, Doc, to Hana

Doc: “Now not too much ice-cream now!”

Me: *? Didn’t you just hear what I…? Bang head against wall x5*

 

Doc: (after reviewing diet sheet) “Well the diet seems ok, I just wonder if there’s a few things we can tweak, like the handful of walnuts for morning tea? They’re very high in cholesterol you know.”

Me: *Activated, organic walnuts are causing her rapid, unrelenting, life threatening morbid obesity?? Refer to conversation #3.*

 

Doc: “She needs to get out of the wheelchair. She needs more exercise.”

Me: “She swims 1 K a day. She can’t walk because the of the weight on her tiny ankles and knees. The pain is simply excruciating for her.”

Docs: “But if she could get out of the wheelchair the increase in exercise might slow the gain.”

Me: “If we could slow the gain, she might be able to walk again.”

Doc: (learning forward, earnest about this:) “How about we try, really try and get her out of the wheelchair?”

Me: *Bang head on wall x5*

 

Doc: “Be good with your food now Hana!”

Me: *Be good with..? The girl lives on salad, is tormented by a hunger  that she ignores every second of the day and yet is still burdened relentless weight gain. (Bang head on wall x5)*

 

Doc: “Now Hana, I want you to be really, really good with your eating OK?”

Hana: *??*

 

Me: (after handing doc detailed diet sheet) “She lives on salad, she is the most delicate and disciplined eater that I know. Particularly in light of her hunger.”

Doc: (scans immaculate diet sheet) “You know we could admit her for a hospitalised stay for  strict dietary observation, just to make sure that there are no loopholes.”

Me: *Refer to previous comment and refer to conversation #3. Also, compare quality of processed hospital junk food in relation to our whole food organic diet outlined in conversation #4.*

 

Doc: “Bye now! Try and lose some weight OK Hana?”

Me: *Do you even KNOW what Hypothalamic Obesity IS?? Someone grab me a fricken textbook here.*

So there is a teeny tiny taster of the cr – whoops, I mean things I had to listen to, with a wretchedly respectful smile on my face for 18 months while Hana’s life slipped through my fingers with each kilo of weight gain. Until, of course, we decided to take Hana to Egypt for life preserving Bariatric surgery. The surgery  transformed things for Hana and the family (update on that soon) but it isn’t a cure of course – only a healed brain would be a ‘cure’! And, as you know, I’m working on it..!

First time here? OK so this post may seem odd, you better read some background! There’s more on my story with my daughters’ Hypothalamic Obesity post brain tumour here. And please do check in with me on Facebook here!

 

 

 

 

 

 

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  3 comments for “The Crazy Things Doctors Told Me (Pre lap band). You’ll want to bang your head against a wall.

  1. Poppy Lopatniuk
    August 4, 2016 at 3:37 am

    Hullo Naomi – I certainly resonate with your writings – this last state of affairs with doctors and weight gain we went through with Tim Young from Tasmania. Tim’s parents appeared on Sunday night programme with your family a little time ago.During his illness Tim went into hospital a few times to monitor his weight – one time he lost 30 k in first week – proved to be all water – he stayed in hospital for some months after on their weight reduction programme and his weight never moved but the 30 k went on again because of unrelenting thirst – he used to suck on ice cubes all through the winter time. It is a cruel illness – I do not understand our Health authorities and Medical Research Institutes that they do not fund research into these complex brain tumours – their cause and dreadful effects on our children. Prolonging the life of aged population seems to be the main aim of our government. Give your little one all the love, the fun and good times that you can and keep up your hope for better times.

    Tim’s grandmother Poppy Lopatniuk plopatniuk@hotmail.com

    ________________________________

    • Naomi R Cook
      August 4, 2016 at 3:41 am

      So good to hear from you Poppy! I too wish that more research was done on this, but being a rare condition it is hard to draw interest/get funding and so on. Hence the reason I took matters into my own hands and up and left Australia for help in Egypt! I think of dear Tim all the time and hope you and his parents are well. May he rest in peace, dear soul xxx

  2. August 4, 2016 at 6:23 am

    Hi Naomi,

    Like Hana, Yvette too has the same problem but, has never had a lap band fitted. As she has become older she has somehow managed to watch what she eats but, then she binge out on junk food and you cannot stop her. So many times I had tried but, it ends up in an argument. It is made harder by the fact she receives a Disability Pension. You cannot do any. Better than you are doing. We have found out that dietitians do not listen and make unrealistic comments regarding what people like Hana and Yvette should eat.

    Yvette has never been on any medication to control her social skills hence people being told where to get off should they upset her in anyway. She has set ideas and ideals. To Yvette there is either black or white but, no in between. Sometimes I could crawl under a table!

    Still no answers from doctors to tell us why she often passes out! Has had quite a few tests now but, only one possible answer after I googled to see if there were any answers from overseas studies. A German study came up with “secondary narcolepsy” bought on by having had a Childhood Craniopharyngioma where not only the pituitary gland was damaged but, also the hypothalamus. It said that goes hand in hand with morbid obesity brought on by damage to the hypothalamus. It said that it is rare but, this “secondary narcolepsy” is caused by an decrease instead of an increase of Melatonin which is produced by the hypothalamus. I have since found a Danish study which backs this up. Yvette’s Nighttime Saliva Tests showed a reading of just 3 when it should be 45+. She has now been put on Melatonin tablets by her new GP. (Losing our old GP is another story.)

    I have also had Yvette passing out due to excruciating pain caused by her very severe double curvature of her spine (scoliosis). The doctors would not give her growth hormone when she was diagnosed with having a Craniopharyngioma as they said she was too tall but, when she has had her arms measured in latter years she has been told she should have been about 6 feet tall instead of 5 feet 4 inches. So, please keep an eye on Hana’s spine.

    There are times when Yvette says she wishes she died on the operating table but, I won’t except this. I told her that I repeatedly heard that from my mother when she was alive and I don’t want to hear this from her.

    I have been told that Yvette’s isn’t just rare but, extremely rare. Her Sleep Disorder Doctor told me that he has never cared for a patient who has had a Childhood Craniopharyngioma before. This is why it is so hard to get our children the right type of treatment. So frustrating when you really don’t have anyone who truly knows all the ins and outs of this type of brain tumour.

    I hope that what I have shared helps Hana to live a long life. I have recently been told that Yvette’s life expectancy is only 10 years shorter than the average life expectancy for most women.

    I am praying for Hana to be healed just like I do for Yvette.

    Take care and God Bless,
    Frances XXX

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