INTELLECTUAL PROPERTY NOTICE

*ALL information on this website is the intellectual property of the blog/website owner! Unauthorized use is prohibited. If you see something you'd like to repost or share, please email me and ask first. This includes but is not limited to all text, information, and photos on the blog. Thank you!*

**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Monday, April 16, 2012

Kathie Lee & Hoda's can o' worms

The Today Show on NBC ran a story today that has been making big waves amongst the members of the feeding tube community. Really big waves. The title of the article by Linda Lee of the New York Times is "Desperate brides try feeding tube diet". The content of the article is really nothing new. It's all about brides going on crazy fad diets in order to shed a few pounds before their big day. It lists several diets (Master Cleanse, HCG, Atkins, etc.) and gives examples of women who have been able to lose a quick 15 or 20 pounds before their wedding. Then it takes a rather despicable turn.

It seems that there is a doctor in Florida who has started offering a "feeding tube diet" to people who want to lose weight quickly. The diet is called the K-E diet and is more widely known in parts of Europe as the KEN or "ketogenic enteral nutrition" diet. The story talks about a woman who wanted to lose weight quickly in March so that she could go dress shopping for her upcoming wedding in June. For a price tag of $1500, she went to this physician's clinic and had a nasogastric feeding tube placed through which she would be fed a ketogenic formula of 800 calories per day for 10 days with no other food being consumed during that time. This formula throws the body into a state of ketosis, meaning that the body is burning fat rapidly. I know that sounds like a good thing, but it's not because the body is in crisis mode. (I will talk more about the ketogenic diet later.) The NG tube prevents the person  from having to drink the formula. (I was going to say "patient" instead of "person" but I don't think the word really fits this situation.) In this case, the woman had the tube removed (which sounds more complicated than it really is, Raya "removed" hers just by sneezing a few times) after 8 days instead of 10 because she lost the 10 pounds she wanted to lose more rapidly than expected and reached her goal weight of 127 pounds. Yep, that's right. She weighed a whopping 137 pounds and NEEDED to lose those horrid 10 pounds SO badly that she just HAD to get an NG tube and use an 800 calorie per day ketogenic formula to do it so that she could go WEDDING DRESS SHOPPING.

I'm trying not to pass judgement on women who obviously are feeling insecure about their bodies and want to look good on their wedding day, but I think that using an NG tube and ketogenic diet to shed a few vanity pounds takes extreme and ridiculous to a whole new level. Here are the ways that this story bothered me:

1. I don't understand why it's really necessary to even use an NG tube for this diet. I loved this statement by Dr. Scott Shikora in regards to low calorie diets: "...any caloric restriction will lead to weight loss. “The novelty is, they shove a tube in your nose,” he said. It doesn’t matter if it’s through a tube, a straw, a meal plan,” he said. “They all work, if someone goes from 3,000 calories a day to 800.”
And he's absolutely right. Cutting calories leads to weight loss. Why is it necessary to use a feeding tube and ketogenic formula which both come with potentially serious health risks in and of themselves when you could accomplish the same thing by eating nothing but lettuce for 10 days? If all she drank was 800 calories' worth of vegetable juice or Slim Fast for 10 days, she would probably lose weight that way too, if for no other reason than the diarrhea that would likely result from 10 days of nothing but liquid. (Believe me, liquid diet=liquid poop. Ask Raya.)

2. If you're planning a wedding months or years in advance, you have plenty of time to plan a healthier lifestyle that can give you better and longer lasting weight loss results than a risky crash diet. It's just common sense.

3. Ketogenic diet. Want to know what the real purpose of the ketogenic diet is? Ask a child with a seizure disorder. Kids with seizure disorders often start out the treatment of their disorders by trialing different medications. These meds are cruel. They have awful side effects. Sometimes they work and a child can go from having a hundred seizures a day to maybe a dozen or two. There are all kinds of seizures with varying degrees of debilitation involved, and when the meds don't control the seizures as well as they need to in order for the child to function, desperate parents and physicians sometimes try putting the child on a ketogenic diet to help alleviate the seizures. This diet is almost always started in the hospital under direct supervision of physicians, dietitians, and nurses. Ironically, it is a high-fat and low carbohydrate diet that induces a state of ketosis where the body burns fat instead of carbohydrates. The diet is strenuous on the liver and kidneys and as such, patients are monitored closely for signs of liver and kidney failure. Other possible risks are kidney stones, bone fractures, high cholesterol, constipation, dehydration, and slow growth. Does this really sound like something that should be used to shed a few vanity pounds?

4. I'm kind of sickened by the fact that a licensed physician would go so far in his quest for the almighty dollar that he's putting feeding tubes that are intended to SAVE people's lives into people who, by his own admission, just want to lose a few pounds. Here's what he said about it, “At first I decided not to do it for people who just want to lose a few pounds,” Dr. Di Pietro said. “But then I thought, why should I say 5 or 10 pounds are not enough? People want to be perfect.”  He outright admits that he's exploiting the insecurity of people who "just want to lose a few pounds" by offering them this...unique diet. He uses a lifesaving medical intervention as a gimmick to attract people who don't want to use safer methods of dieting. To me, that walks a very fine ethical line.

On to the next portion of my diatribe. :) After the original story aired on the Today Show, the segment was re-aired on the Kathie Lee and Hoda hour. This was the part that really got to me. In the past 2 1/2 years, I feel like I've developed a pretty thick skin when it comes to feeding tube related things, but I have to admit this part stung a little bit.
I suppose I shouldn't have expected any amount of class from the two of them in their delivery of this story, but their complete lack of it was a little bit surprising. They started out by saying that there's a new diet trend using feeding tubes that according to Hoda is "actually kinda sick" and according to Kathie Lee is "ingenious". They go on to talk about how the person gets the tube put in their nose and then they have to carry this BAG with them and they have to SLEEP with it and take it to work with them. (oh, the horror) Hoda starts to mention something about the risk of infections with the NG tube but then scrunches her nose in disgust and asks, "And if it gets knocked out? What if you fall down?" giggle, giggle, giggle. As if that's really the worst thing that could happen to someone. (and yes I'm watching it right now, and yes my eyes are stinging a little again as I reach for my kleenex) It wasn't the words they were saying that was a problem, it was the attitude with which they delivered the story. It was all a big joke to them.

Well let me tell you, Kathie Lee Gifford and Hoda Kotb. Let me tell you what happens when you have to carry "that bag" around, and what happens when it gets knocked out or you fall down. Well, actually, let's start with the way people stare at you when you have a tube in your nose. It doesn't matter how old you are, people stare. Some stare in innocent curiosity, some stare in disgust. When you have a toddler that can barely walk and they're toddling around wearing a tiny backpack with a tube coming out of it, people stare. They make comments like, "What a cute little backpack! Where did you get it?" (from my home health company to the tune of $115) They sometimes ask you why your baby is wearing a backpack. If you carry the backpack for them, people look at you like you're horrible for putting your child on a leash. The pump always beeps at the most inopportune moments. And guess what, Kathie Lee and Hoda. The tube DOES come out. And guess who gets to put it back in. ME. That's right, I get to bind my baby in a blanket with her arms tucked down at her sides so she can't move, put her on the floor, straddle her so I'm keeping her from moving but not squishing her, put one palm on her forehead to keep her head still and slightly tilted back, and then run the tube up her nose and down her throat while she cries and gags and chokes and screams. Then I get to try to hold it down in place with one hand while I stick a piece of tape on it with the other hand (tape which will cause her skin to blister within a few days) and then get out my stethoscope to listen to her stomach and make sure it's in place. Then I unwrap her and hold her close until she's done screaming. That's what real life with a feeding tube is like. But I guess you probably don't know about that part because a story like that is sad and doesn't get the same ratings as an outrageous fad diet story.

When I saw the first story air this morning, I actually kind of laughed about it because it is just so ridiculous. The fad diet aspect of it is, for lack of better words really stupid, but the part that really upset me was the complete and total lack of respect or empathy for the people who use feeding tubes because of genuine need. There are so many people who suffer through painful diseases like Eosinophilic disorders that cause the body to attack itself in the presence of food who have no choice but to live off of nothing but hypoallergenic formula that really doesn't taste good. There are people who would drown every time they took a drink of something if they didn't have feeding tubes because they are unable to swallow without food or liquid entering their lungs. There are those whose stomachs and intestines have suddenly shut down without apparent cause or warning. There are others like Raya who have had such painful and negative experiences with food that they become physically ill at the mere thought or sight of food. There are people who have had parts of their digestive systems removed due to cancer or other diseases and are left with no option but tube feeding.
These are tiny premature babies, toddlers, older children, teenagers, young adults, middle aged adults, and the elderly. They and their families deal every day with the physical and psychological ramifications of being forced to be fed through a tube in order to survive, and stories like this only further perpetuate the negative stigma that none of us in the tube feeding community want our loved ones to have to face. The woman in the story mentioned that she couldn't even go into her children's school because all the kids would be scared of her. How would she feel if it was her daughter that was forced to wear a feeding tube taped to her face and walk into that same school every day where her own classmates would be scared of her?
I've tried to keep an even keel and not be melodramatic about this, but I really felt like I needed to address it. The content of the story, albeit ridiculous, was not what bothered me. To each his own, if you want to pay $1500 to voluntarily shove an NG tube up your nose and starve for 10 days on 800 calories of formula, that's your business. The part that bothered me was the flippant giggling and tone of disgust when talking about feeding tubes. I know they probably didn't intend to insult people like me, but their attitude was hurtful. I realize that their disgusted looks and mocking laughter came as they were watching footage of a tube being inserted into an adult woman's nose, but when I see an NG tube, I can't stop the images of my sweet little baby screaming while I put the tube back in for the umpteenth time from flooding my mind and there is NOTHING even remotely funny about that. They ain't pretty but dangit, that awful beautiful little yellow tube saved my baby's life!

They ticked off the wrong group of people, by the way. You should have seen the way that all the tubie mamas from Feeding Tube Awareness lit up KL & H's facebook page today. :) Anyway, I'm generally not one to cause a scene or ruffle feathers but in an uncharacteristic move, I sent an email to the Today Show. Here's what it said:

To whom it may concern:
I saw the story that ran this morning on Today and on Kathie Lee & Hoda about the extreme diet involving brides using nasogastric feeding tubes for rapid weight loss and I'm struggling to even put my reaction into words. I am the mother of a 2 1/2 year old girl who has depended 100% on a feeding tube since she was 2 months old for all of her nutrition, hydration, and medication needs. To say that life with a feeding tube has been a struggle would be an understatement. I am a staff member for the Feeding Tube Awareness Foundation which is based out of New York, and stories like the one you ran today accomplish the exact opposite of what our foundation is working tirelessly to do. As parents of tube-fed children and also many adults who are tube-fed themselves, FTAF is trying to share the POSITIVE aspects of what feeding tubes can do for people who are unable for whatever reason to consume enough calories and fluids by mouth to sustain their own lives and help families cope with the struggles of life with a feeding tube. There are thousands of reasons why babies, older children, teens, and adults end up needing feeding tubes that are LEGITIMATE reasons. A bride using an NG tube for the purpose of shedding a few vanity pounds is a mockery what is intended to be a lifesaving medical intervention. There are also thousands of families in the US who fight month after month with their insurance companies (IF they're lucky enough to HAVE insurance) just to get basic feeding tube supplies and specialized formula covered by insurance and these women are going out and spending $1500 just to lose 20 pounds in a rapid and unhealthy way. It's absolutely ludicrous.


To be honest, that part didn't bother me nearly as much as the way that Kathie Lee and Hoda talked about feeding tubes. Their flippant disgust for the tube that has saved my daughter's life every day since she got it is offensive and hurtful, and not just to me personally. That exact attitude embodies the entire purpose behind the Feeding Tube Awareness Foundation, which was started as "a means of supporting parents of tube-fed children and raising positive awareness of tube feeding as a life saving medical intervention." I understand that inflammatory stories such as this one get good ratings, but in the future please do your research before running a story that sheds such a negative light on something that, when used for its intended purpose, saves millions of lives throughout the world. PLEASE consider running a positive story about feeding tubes and the children who depend on them, like my daughter Raya. Her story can be found on my blog at www.agirlandhertube.blogspot.com and on this video: http://vimeo.com/36259981. Please also visit www.feedingtubeawareness.org and the Feeding Tube Awareness Foundation facebook page. Traci Nagy is the founder. She lives in New York and would be an excellent point of contact should you decide to run a story.
Sincerely,
Brandis
So there you have it. Nothing may ever come from that email but at least I've said my peace and maybe somebody at NBC will read it and learn something. Aside from the purpose of empowering parents and people who are tube fed, this is why the Feeding Tube Awareness Foundation exists. I know a lot of people want a formal apology from Kathie Lee and Hoda, but frankly I don't care if they apologize. I think if they apologized for everything offensive they ever said or did on their show, that's all they'd have time for. I would rather have the Today Show bring some children and adults whose lives are saved every day by their feeding tubes onto their show and help us show the world what they're really supposed to be used for. Positive awareness is so important to everyone whose lives depend on feeding tubes. They have enough to deal with without people making light of their lifeline.
The end.

3 comments:

  1. You are my hero. Thank you for standing up for our kids!

    ReplyDelete
  2. Amen to everything you said. I hope the powers that be at NBC read your email and respond to you. They surely received an education if they read it!

    ReplyDelete
  3. Brava!
    Thank you for speaking out and educating the rest of us who have not had these experiences. I have dear friends who are experiencing these things and you have helped me understand them better. Like Noelle said...you are my hero! many hugs~

    ReplyDelete

All comments will require approval from blog owner prior to being published.

Related Posts Plugin for WordPress, Blogger...