Time is running out: Why Hana needs bariatric surgery NOW and why we can’t get it…

Hana HO Face CryingEvery week that we delay getting Hana fitted with a lap band means more weight.  Every KG she gains she gets sicker and her quality of life decreases. Every KG she gains she is a KG closer to dying from her weight and from weight related morbidities. We DON’T have time to play with.

Two weeks ago,  a beautiful, very young soul died due to his hypothalamic  obesity. Two days before he died, he saw me and Hana on TV on Sunrise and was so excited that this might mean the start of a change for sufferers of Hypothalamic Obesity – that by getting the condition into the limelight, medical professionals who should be responsible for fighting this condition with bared teeth might WAKE UP and start doing something rather than ignoring it, telling sufferers to ‘get used to it’ to ‘live with it’ whilst their bodies slowly age and break down from the morbid obesity. I think about him a lot these days as I’m battling to get help for Hana…I think that I’m not just battling for Hana but hope that this battle will bring about good for others too.  I dream that I can help facilitate a change in treatment protocol for these survivors – because as you can see; the current treatment protocol DOESN’T WORK! I soooo want to move science in this area.

This bodily destruction is happening to Hana – what we can see on the outside of her innocent child’s body is this enormous increase in size, stretching her skin tight over the sudden increase of weight. She has new bulges in places that shouldn’t bulge, around the sides of her knees, over the elbow, a soft pillow of fat billowing under her chin, beginning to suffocate her while she sleeps. Her face beads with perspiration while she huffs and puffs as she waddles around, clumsy with the 30KG in one year weight gain on her 125cm build. But on the inside, what is happening? Her liver by now will be fatty and enlarging, and there is a huge chance her heart will already have had to enlarge a ventricle to cope with this enormous load it has to pump blood around. Diabetes type 2 is just around the corner, I am waiting for it to rear it’s ugly head ready to wreak further havoc and destruction in my daughter’s broken body.

Why Hana needs a Lap Band

The lap band will interfere with neural signals from the brain to the tummy, telling Hana she is full, this will transform her quality of life because she is tormented by thoughts of food. However, as you know well by now, Hana doesn’t over eat so eating less isn’t an issue BUT this interruption to neural signalling acts as a circuit breaker to part of the troublesome excessive neural-hormonal activity that causes Hana to gain weight uncontrollably. It should interrupt the signals that ‘hard wire’ her to obesity.  For the medically minded, it acts as a “functional vagotomy” and should act on her hyperinsulinemia too.

In my humble opinion, Hana would have benefited enormously from being given a lap band last year, before she reached the stage of morbid obesity. I used to think of this as a ‘prophylactic lap band.‘  (This is something I’d love to research for sufferers of this condition, somehow I don’t think I will find a like minded health care professional who would agree with me). Hana’s disease state is and has always been rapid, progressive and unrelenting – heading in only one direction. However, imagine the resistance I’d have faced presenting my “merely” overweight daughter to the bariatric community last year? If we are having issues with a morbidly, dangerously, obese child, we’d have had no chance presenting earlier, (and yes, I was dumb enough to try once…don’t get me started on what they told me). And so, we’ve had to wait for her to get more and more obese before seriously approaching this sector of medicine for help. How sick is that?

Why can’t we get a lap band done urgently?

In short, because getting a lap band put on Hana will be a World First for someone her age, with her condition.

We finally found someone almost as passionate about helping Hana as we are – last week. We found an absolute angel, empathetic, compassionate, outrageously & brilliantly intelligent and highly experienced, who also agreed we needed to act with a lap band as a matter or urgency. However, the framework in which this awesome individual works is resistant. The first hospital he asked whether he could perform this ultimately life saving procedure in, refused him. He is now trying to work out other options but he does fear that he may not find a place where he can conduct the procedure.

Lap banding has only ever been done in adolescents here in Australia and ultimately world wide (except for Saudi Arabia), who go to the Adult hospital for the procedure. Adult hospitals won’t home Hana, a child. Whereas the children’s hospitals don’t conduct bariatric procedures.

In addition to that is the fact there is no evidence base established for this procedure on Hypothalamically Obese children – Hana will be the first case. The youngest (mentioned in the amazing research by Mueller) has been an adolescent.  Convincing an ethics committee or more likely a group of non-medical pen pushing executives who decide ‘what happens’ in their hospital is another matter entirely.

We also do not have the expressed support of some of the local care providers here who have dealt with Hana’s case here. They are simply too hesitant. This is a shame, as there are three Experts on metabolic obesity around the world who support the concept – one of them has in fact urged us to a get a bariatric procedure done as a matter of urgency, telling us not to wait any longer.

By the way, one concern we have is that the longer you wait for intervention whilst there is weight gain the more dangerous the surgical procedure will be. Some obese individuals are ordered to lose weight before their bariatric procedure so that they can be safely intubated! Well for a ‘normally’ obese individual some temporary weight loss through a crash diet may be achievable but this approach wouldn’t work for Hana, her body does not work like that. So what would happen if she got too big to be operated on safely?

For now…

We have Easter coming up and little will get done. We are continuing with the extortionately priced Octreotide, which hasn’t halted the gain but has slowed it slightly, and will see if there is any progress next week. We do have another option lined up – but it is in Europe and we know that we will have enormous issues returning to Australia with the procedure completed elsewhere – what happens if the band slips? Or there is another complication? No one will want to touch her and not only that, we face a large stigma as parents for doing that, for taking our child away to another country for a procedure people disagree with here. Of course stigma means nothing to us, but we wouldn’t want a stigma attached to US to impact on the best care for Hana.

Keep us in your thoughts, this battle is far from over.

More on our post-brain tumour journey here. I also update my Facebook page regularly on what’s happening, but I also share work stuff (Nurse Naomi Press) there too, so don’t be surprised. If you feel like ‘liking’ me, I’d like that 🙂 Thanks everyone.

 

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  5 comments for “Time is running out: Why Hana needs bariatric surgery NOW and why we can’t get it…

  1. April 2, 2015 at 11:37 pm

    My heart goes out to Hanna and your family. I pray Hanna will have the proceed that may help you.

  2. April 3, 2015 at 6:28 am

    Its extremely painful to know that a small child has to be put into too much drugs and has to go under knife. On one hand , it does put the body out of balance, and interferes with the normal body functioning also kills the body’s control system to self correct over time. But on the other hand, it gives a temporary solution of stopping weight gain and prevents further damage and danger.

    I am sure you have researched enough and have a plan to restore Hana’s health. I hope bariatric procedure works well on Hana, it you believe on its efficacy and are confident with the doctor who is willing to do the surgery. I hope you have had second opinion from experts before taking a big step and are well informed of consequences, side effects, pros and cons .

    My prayers to you and Hana for whatever decision you plan to take. Its hard to imagine what you may be be going through. Stay confident and have faith.

    God bless Hana. Wishing Hana good health soon.

  3. Carol Johnson
    April 6, 2015 at 9:02 pm

    Have you read about this?
    GLP-1 analogues as a new treatment option for hypothalamic obesity in adults: report of nine cases

    Full text available here:

    http://eje-online.org/content/168/5/699.long

    Carol

    • Naomi R Cook
      April 7, 2015 at 1:21 am

      This is VERY interesting, I’d heard of it before and know of a centre conducting research on this. Haven’t seen anything come out recently on it though, I’ll do a quick pud med search to check

  4. Carol
    April 17, 2015 at 6:19 pm

    I just read your post about the V-Bloc. Best of luck to you.
    Regarding the GLP-1 analogs, another pubmed search (GLP-1 Hypothalamic obesity) brought up a link to an excerpt from a book describing a 17 year old tumor survivor who responded well to the medication. Various forms of the medication are widely available so I am hoping we won’t have trouble obtaining a prescription and support for our daughter who just turned 21. She wants to wait to start the medication until she finishes her semester in college in early May. It is so amazing reading the full research articles because you can so feel for the people in the studies. In one of the articles a participant describes his great joy feeling full after eating- the first time since his surgery. Another refuses to stop the medication even though it makes him extremely nauseous. It seems clear he is relieved from the suffering of constant hunger and weight gain.
    Again the best to you and Hana.

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