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Is wrong ever right?

December 31, 2013

Weight LossFat PoliticsFat HealthFat ScienceFat NewsWeight Loss SurgeryDickweedDiet Talk

Trigger warning: Discussion of weight loss surgery as treatment in hypothalamic obesity.

I came across this article in my news feeds Saturday morning. Alexis Shapiro is a 12-year-old girl who had a tumor removed from her brain two years ago. She has since developed hypothalamic obesity with a 140 lb. (63 kg) gain in two years. However, her body keeps sending hunger signals. Her doctor wants to give her a roux-en-y procedure. This is national news because Tricare denied the procedure. I see a lot of the discussion around Alexis’ case revolves around the evilness of insurance companies, but I think that misses the mark in a huge way.

Alexis Shapiro

Alexis Shapiro
Ilana Panich-Linsman for NBC News

Why wasn’t this news to spotlight an orphan disorder? Here is a case of someone who is deathfat from a documented physiological imbalance, yet I’ve still read suggestions that she put down the fork and/or will herself thin. Facts be damned! She must be cheating on her diet if she’s still gaining weight. Whenever an actor/actress gains weight for roles, there are inevitably articles written to praise their bravery (gag me) and divulge how it was done. I remember one who said they’d set an alarm to go off every two hours for food. They were waking up many times in the middle of the night to eat. That weight gain is accepted as both difficult and courageous while Alexis’ is seen as bad parenting, emotional issues, or lack of desire to be thin.

More importantly, why wasn’t this news on an ethical front. The Shapiro family doesn’t need Tricare’s approval because they crowdfunded enough for the procedure. The question shouldn’t be, “Is Tricare a bunch of heartless bastards?” but rather, “Should Alexis be having this procedure?” We don’t have much information on the long-term impacts of weight loss surgery performed on juvenile patients. There are case studies of adults suffering from hypothalamic obesity who experienced improved prognoses after weight loss surgery. Although they developed their pathology following craniopharyngioma treatment as children, the weight loss surgeries weren’t performed until they were adults.

I found a decent meta-analysis (study of studies) from 2008, “Systematic Review and Meta-Analysis of Bariatric Surgery for Pediatric Obesity.” They conclude significant weight loss occurred, but with serious complications. They also score their evidence as moderate to weak due to short time frames, small cohorts, etc. It’s the same old song of weight loss surgery: it’s horrible, but it’s the best we’ve got so do it anyway.

Performing the surgery on a growing body runs the risk of malnutrition. On the pro-surgery side, I hear she can receive shots for anything she’s deficient in. On the anti-surgery side, who wants to do that? I suppose an argument could be made that she’s already injecting insulin so what are more shots, but I’m biased by my needlephobia. I personally find weight loss surgery to be medically-induced aversion therapy. I believe it is morally wrong because it creates more problems than it solves. But that is me and I am not in the Shapiro family’s shoes.

When I am making a decision about a treatment, I focus on the concept of acceptable risk. What are the odds of Complication X and am I willing to take that chance? Which side-effects would I be willing to tolerate to alleviate Symptom Y and which ones wouldn’t I accept? What I find acceptable others might not, and vice-versa. If my untreated prognosis was death, I might be more receptive to weight loss surgery and its possibility of death. If my life currently sucked, I might be willing to trade that for a life of different suckiness post-surgery.

I don’t know enough about Alexis’ case to know if her family’s sought a second opinion. When your disease is rare and other people with it lost weight surgically, maybe you’ll take that option. Now the Shapiros have a decision to make.  How would you choose?  Are there any circumstances that would change your mind?

03 Jan.  Update on Alexis: The Shapiro family has raised over $78,000 and Tricare approved the procedure.  Her mother says they plan to use the crowdfunded money on non-covered expenses, such as travel to the surgeon, and that they want to help other children in need with the rest.

Gingeroid Sig

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25 Comments leave one →
  1. December 31, 2013 9:20 am

    From the sounds of it, Alexis could very well just keep eating until she dies of serious complications from her body putting on so much weight so quickly and at a young age. It’s a terrible postion to be in, between the rock and the hard place, so it’s a matter of choosing which road is the least awful. As a parent, if I knew I could do something to reduce the weight and keep it off while research kept going into getting the hypothalamic thing under control, I’d take that route. What’s my alternative? Watch my kid eat herself to death? No thank you. I respect that others may feel very differently, however.

    • gingeroid permalink
      January 3, 2014 10:37 pm

      I respect that others may feel very differently, however.
      That’s the great thing about being able to choose.

  2. Kala permalink
    December 31, 2013 11:20 am

    This is an exceptional case, and I’m sure there’s really no great answer because we don’t have foresight. She could have her growth stunted and abnormal from malnutrition from WLS or her growth stunted and abnormal from being extremely heavy before she is done growing. Also there’s the issue of whether or not the child is always going to have significant illness in her life. If WLS has the potential to bring some relatively normal years to her childhood, where not giving her surgery will not, then I think that’s argument enough in benefit of the surgery.

    • gingeroid permalink
      January 3, 2014 10:39 pm

      Definitely a case of having to choose between the devil you know and the devil you don’t.

  3. vesta44 permalink
    December 31, 2013 1:08 pm

    I’d say the parents are between a rock and a hard place here. On the one hand, Alexis is gaining weight even on a very low calorie diet and she’s hungry all the time. I know a lot of adults who couldn’t deal with that and would see WLS as a solution. On the other hand, Alexis is still growing, and WLS is enforced starvation, with various complications that could permanently stunt her growth, and with which she would have to deal for the rest of her life (and which could shorten her life significantly, if not end it).
    That doesn’t even take into account that she has a medical condition which causes her to gain weight no matter how little she eats or how much she exercises, and people are still accusing her of lying/cheating on her diet/exercise plan and accusing her parents of not caring enough to make sure she’s sticking to “the plan”, because after all, it’s calories in/calories out, and just starve yourself enough and exercise enough and you too can be thin, even if your body is saying “Fuck you, ain’t happening.” I’m betting she’s also facing bullying from some of her peers, not to mention strangers on the street.
    Without knowing if there are other treatments for her condition, without knowing if they’ve even been able to consult with other doctors, we have no way to judge if WLS is the correct thing to do. Some people seem to think that TriCare is the bad guy here because they refused to pay for the WLS. But given that there just isn’t a lot of evidence about how WLS affects kids long-term, I don’t see where they had much choice. It looks like she’s going to be able to get the surgery anyway, but I’m wondering if her parents have considered the fact that TriCare may not pay for any WLS-related aftercare (I’m not sure if TriCare can refuse to do that, what with the passage of the ACA and all, but still, there is that to consider). That aftercare can get to be quite expensive and time-consuming – follow-up appointments, supplements, shots, etc.
    I just don’t know what I would do if I had a child with this condition, despite my misgivings and all the knowledge I have about WLS from my own experience with it (mine that failed, my best friend that died from it, and knowing people online who have had horrific experiences with it). None of us have a right to judge Alexis or her parents for whatever decision they make, we aren’t the ones who have to live with the consequences of those decisions.

    • gingeroid permalink
      January 3, 2014 10:45 pm

      I don’t believe anyone is judging. I made a point in writing this to emphasize what was my opinion and that it may not be shared by all. The question posed is what we’d choose and what, if anything, would change our mind.

      What appears to have happened with the rejection is that Tricare auto-rejected the surgery on the grounds that it was being performed on a juvenile. I believe incomplete bone growth was the specific citation. After reviewing Alexis specifically, they’ve reversed their decision. Your guess is as good as mine as far as what will be covered post-op. However, the Shapiros have the ability to go around Tricare via their crowdfunding effort.

      • vesta44 permalink
        January 4, 2014 12:48 am

        gingeroid – I didn’t mean anyone here was judging Alexis or her parents. All the judgmental BS I saw, and was referring to in my comment, was from comments on the article itself. The trolls were out in force, and being the worst kind of asshats.
        I didn’t know TriCare had reversed its decision when I commented. If they’re willing to pay for her WLS, they’ll also pay for any aftercare she may need. I know that my WLS, back in 1997, cost over $25,000, and that didn’t include any of the follow-up care I’ve needed in the last 15 years. The cost of WLS hasn’t gone down any since then either. It also doesn’t take into account all the vitamins and supplements I’ve had to pay for, out-of-pocket, in that time, either. Most of those are OTC items, and insurance doesn’t pay for those – I spend about $50 to $60 a month on vitamins and supplements to replace the nutrients I can no longer get from food. At that, it’s less than what a lot of people who have had WLS have to spend in order to stay relatively “healthy”.

        • gingeroid permalink
          January 4, 2014 11:25 am

          Yes, they certainly are. It was refreshing to see at least a few people question whether the surgery was recommended for cosmetic reasons or rehabilitative reasons.

          Her mother announced the reversal last night. She was still denied when you’d written the initial comment. Currently the Shapiros have raised over $78,000. Even with the surgery paid for, I hope they don’t give all of that away in case they do have unforeseen expenses further down the road. It’s not just the supplements that add up. I’ve been going around my insurance company more and more lately because I like seeing, breathing, being awake, etc. more than I like spending weeks on paperwork. For all the bad things people say about pharmaceutical companies, I really appreciate their discount programs.

  4. fab@57 permalink
    January 1, 2014 11:01 am

    Here’s the question(s) I would need to ask as her parent:
    1. Is the WLS going to END her cravings and ‘need’ to eat? Because that’s what her brain is telling her to do, not her stomach.
    2. What if the WLS doesn’t stop all the cravings?
    3. Is the WLS going to be a success if Alexis CAN’T stop eating after the surgery? Won’t she gain back the weight just the same, only perhaps slower, than before the surgery? (Many WLS patients do, even without such serious and rare conditions like Alexis has…).
    4. Because she might not be able to control her eating as well as someone else without such a severe illness/side effect of an illness already at play here, will her negative side effects from the WLS be twice as bad? 5 times worse? 10 times worse?
    5. Even if she CAN control her eating and cravings… if her body is still gaining weight on such an extremely low caloric diet; what makes eating 400 calories a day AFTER WLS any more helpful in losing weight? Her body is ‘starving’ now, and putting on weight, it’s still going to be starving after WLS……. so is it REALLY the answer?

    This is an extremely difficult position to be in for Alexis’ parents. I honestly don’t know WHAT I would do… except cry for my kid every single day….

    • January 1, 2014 2:57 pm

      fab, No. 1 was the first thing I thought of, too. Everyone here makes some good points.

      I feel so bad for the girl, her family and what they’re going through.

    • Nof permalink
      January 2, 2014 9:55 am

      I had those concerns too. I just hope her doctors are doing what’s right for her, not just what’s quickest and easiest for them and what’s most profitable. This may be one of the cases where WLS will honestly help, but I have so many reservations due to stories I’ve heard from others and what people in my family have gone through. And from knowing how much doctors push WLS.

      • gingeroid permalink
        January 3, 2014 11:07 pm

        The trouble is that every doctor thinks they’re doing the right thing. I have a doctor I have to see for my job who is like a male Janice Dickinson. Not only does he think I’m deathfat but he thinks all my co-workers are deathfat as well, including some who are underweight according to their BMI. In his mind he thinks he’s doing us all a favor by telling us how fat we are and all the ways we’ll die from that, regardless of what all the tests indicate. Though I don’t recall him pushing WLS. Maybe it doesn’t penetrate his delusion?

        Regarding the Shapiros, they’ve chosen a surgeon out of state. You typically don’t go to that kind of trouble unless you have confidence in their abilities.

    • gingeroid permalink
      January 3, 2014 10:59 pm

      Some studies have shown a reduction in ghrelin (a hunger-regulating hormone) post-op. There are also studies that show no change or an increase post-op. It might be one of those things that goes down initially then returns to homeostasis over the course of several years. Or the observations could be due to some combination of surgical technique, genetic predispositions, and placebo effect.

  5. lifeonfats permalink
    January 3, 2014 1:44 pm

    I agree with all points here, this case is not the typical run-of-the-mill reason to have WLS. But it does show how much fat-hate and fat-shame is ingrained into our society when people are perfectly fine and willing to attack a child because of her size. I wish the family all the best.

    • gingeroid permalink
      January 3, 2014 11:15 pm

      Some people are just rude. My dad has had psoriasis for as long as I can remember. I never saw it as a problem because that was my normal; some dads wear glasses, some dads have beards, some dads have scaly skin. Other people thought differently and felt compelled to share those thoughts. Jerks will find something to attack no matter what she weighs.

  6. January 7, 2014 10:09 am

    Everyone has had some excellent points. The only thing I would add to this discussion is that THIS is the kind of life or death situation that weight loss surgery was intended for. WLS is for extreme situations when all other options are exhausted and I can’t blame the parents for trying to find any solution to what is clearly a medical problem. Personally, I don’t think it will work, but I’m not her parents and I’m not sure what I would do in their shoes. However, I would rather read about Alexis Shapiro’s family struggling to decide whether to get WLS to stem hypothalamic obesity than about the parents of a fat child with no extenuating medical concerns discussing this surgery because they think their kid is too fat. WLS is a last resort, not a cosmetic fix.

    Peace,
    Shannon

    • BBDee permalink
      January 7, 2014 4:28 pm

      Right on, Shannon. A few years ago I was HORRIFIED to see an ad in the Sunday paper “magazine” supplement for WLS. The woman said she had her Big Awakening when her daughter wanted to take her to the amusement park, but she couldn’t take her because she was “too fat”. Her weight BEFORE the procedure-218 lbs!!! Within the range I considered my “thin” weight!!! Trivializing such a decision like this makes things so much worse for people like the Shapiros who have to make a serious life and death decision for their daughter. My heart goes out to them!!

      • gingeroid permalink
        January 9, 2014 8:34 am

        The sad thing is that it probably wasn’t trivial for that woman. It must have been hard having to tell her daughter that they couldn’t go to the amusement park because of an excuse that amounts to the perception that we can’t live until we’re thin. Even Chris Christie fell into that trap. I can think of many reasons he shouldn’t be President, his weight isn’t one of them.

    • gingeroid permalink
      January 9, 2014 8:37 am

      I hope it’s because all the options have been exhausted. Without knowing all the details, it’s hard to say.

  7. Linda permalink
    January 7, 2014 9:24 pm

    If she maintains her hunger beyond the surgery, can’t she possibly rupture the surgery site and die from sepsis? This is what scares me the most in this case. There are so many examples of post-op WLS patients “overcoming” the restricted hunger surgery is supposed to accomplish.

    • gingeroid permalink
      January 9, 2014 8:36 am

      That’s a concern of mine as well. Gotta love those post-op message boards where people blame each other’s lack of will/discipline for their stomach adapting to the changed conditions.

  8. Denise permalink
    January 8, 2014 7:15 pm

    This condition is rare, but my 25 year old daughter died from these complications just two years ago. There is no “cure”. It is an attempt to save her life, at least prolong it. So little research has been done. She could just keep gaining until her body shuts down. which is what happened to my daughter. gaining nearly 100 lbs in her final month. Please send this little girl, Alexis a card or letter of support, and make her feel special. Mail to: Alexis Shapiro po box 147 Cibolo, TX 78108. I got her mother’s permission before passing along her address and I’m trying to get her cards from all over the world. Please pass it on.

    • gingeroid permalink
      January 9, 2014 8:26 am

      Thanks for sharing.the PO Box. It’s definitely a morale boost to get mail when you’re sick.

      I am sorry for your loss. If you don’t mind answering, did your daughter have the surgery?

      • hellavawife permalink
        January 9, 2014 5:33 pm

        Just a week before Jessica passed, we discussed the surgery with one of her Drs., and were going to research surgeons when we came home from our Christmas visit out of state, but she died 12/22/11, just before Christmas. My heart just melted over this little girl and I couldn’t stop thinking about her. I just keeping thinking…”I wish I knew then what I know now”.
        Thank you all for your kindness.

  9. January 9, 2014 12:04 pm

    Thank you for such a compassionate and well-thought-out post about this awful situation. I appreciate the courtesy everyone here has given to each other and the absolute non-trollishness of these comments. Thank you all for being so willing to actually converse about this controversial issue!!

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