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All Things Tubie

An Interview with Siblings of Child who is Tube Fed

by Feeding Tube Awareness Foundation on 07/08/14

We thought it would be helpful for parents to hear from siblings about tube feeding. Parents are often concerned about how tube feeding with impact the family. Cole and Ashtyn are the older siblings of Raya, 4, who has had a feeding tube nearly her whole life. 

Interview with Cole (age 9):

 Q:  How long has your sibling had a feeding tube?
A:  Since she was a baby.

Q:  Do you know why?
A:  She can’t eat things through her mouth because she puked all the time when she was a baby.
[Raya had chronic vomiting of unknown etiology that has now resolved.  She is currently diagnosed with dysphagia, GERD, gastroparesis, mild developmental delays, multiple food allergies and intolerances, and 18p11.31 duplication]

Q:  What do you know about how the feeding tube works/helps?
A:  It feeds her formula that gives her the energy food gives.  If she didn’t have a feeding tube she would have to always eat through her mouth and she wouldn’t really feel good like that.

Q:  How do you help with the feeding tube, pumps, feeding?
A:  I can check to see why the pump is beeping, like if it’s empty or if it needs to be primed [when there’s a blockage that causes a no flow out alarm].  I kind of know how to put it back in if her tube comes out.

Q:  What kinds of things do you like to do with your sibling?
A:  Play games, go outside with her, play with toys, read her books, and help her reach the sink and do things that are hard for her.

Q:  Do you think the feeding tube gets in the way of the activity or makes it hard for her to do things?
A:  I can’t really think of anything.

Q:  What’s it like when you’re out with your sibling and people see her tube feeding?
A:  I don’t really notice people looking.

Q:  Do your mom and dad ever worry about the tube (seem worried or struggle with the tube)?
A:  Yes, I think it’s hard for them to have a kid with a feeding tube.

Q:  Do you remember how you felt when your sibling first got her feeding tube?
A:  Annoyed because I thought now we would always have to see her looking different.  The tube bothered me because she was always crying when you stuck it up her nose.  I didn’t like seeing you [mom] put the tube back in her nose because she cried a lot.  And sometimes it gets really old when you hear that every day.  She looked more different with the one in her nose than the one in her stomach.  The one in her nose was the most unusual.

Q:  How do you feel about it now?
A:  Now the tube doesn’t bother me as much.  It’s annoying when the extension tube comes out and we have to put it back in.  The pump is annoying too.

Q:  What’s one thing you don’t like about the tube?
A:  It’s always in the way of things when she’s not wearing her backpack and her tube isn’t tied up [she doesn’t always wear her backpack when we’re at home so the tubing gets in the way].  I don’t like when it pops out because we have to take up time and put it back in.  And it makes a mess and it smells.

Q:  What’s one thing you like about your sibling’s feeding tube?
A:  Her new one glows in the dark and that’s pretty cool.


Interview with Ashtyn (age 11):

Q:  How long has your sibling had a feeding tube?
A:  I want to say a little less than 4 years.  [close, it’s been 4 years and 4 months].

Q:  What can you tell me about why she has a feeding tube?
A:  Because when she was little she wouldn’t eat like she was supposed to so the doctors gave her the feeding tube through her nose and then that kept coming out.  Then they gave her a different tube and a couple other tubes after that.  Now she has a glow-in-the-dark one. She threw up all her food after she ate.   [Raya had chronic vomiting of unknown etiology that has now resolved.  She is currently diagnosed with dysphagia, GERD, gastroparesis, mild developmental delays, multiple food allergies and intolerances, and 18p11.31 duplication]

Q:  Why does she still have a feeding tube?
A:  There’s a lot of things she can’t have and there’s only certain things that she can eat.  She won’t exactly eat all the stuff she’s allowed to eat and she doesn’t eat enough.

Q:  What can you tell me about how the feeding tube works/helps?
A:  The feeding tube gives her food and helps her not be hungry.  Without it she’d have to drink the formula and probably wouldn’t really accept that.

Q:  How do  you help with the feeding tube, pumps, feeding?
A:  Sometimes in the morning, I help get the pump ready by getting the bag and turning on the pump.  When her balloon comes out, I find the emergency kit and put it back in.  If her pump beeps, I fix the problem and get it going again.

Q:  How did you learn to do everything you know how to do with her tube and pump?
A:  You [mom] taught me and I learned by watching and asking questions.

Q:  How does knowing how to do all those things make you feel?
A:  I feel unafraid and relaxed because if her tube comes out I know what to do.  If I didn’t know how to take care of her, I would be worried and scared.

Q:  What kinds of things do you like to do with your sibling?
A:  Dance, talk about things, let her sleep in my bed, play games, let her play with my jump rope, teach her things.

Q:  Do you think the feeding tube gets in the way of the activity or makes it hard for her to do things?
A:  No.  I mean, swimming, if she’s plugged in.  We have to unplug her and then plug her back in when she’s done, but I don’t really think it gets in the way of anything.

Q:  What’s it like when you’re out with your sibling and people see her tube feeding?
A:  Sometimes at school I’m talking about her and they don’t know who I’m talking about so I give them a brief summary about why she got her tube.  My friends sometimes wonder what the tube is and why she has it, but mostly they just think she’s cute.

Q:  How does that make you feel when people are curious about her tube?
A:  If I can tell they’re curious, I go up to them and tell them about it.  I can usually tell if they’re staring at her.  If they’re staring with a disgusting face, I feel like doing something about it and telling them not to stare at her because she’s just a normal kid.  If they’re just looking at her in a normal way then I’ll be nice about it and just answer their questions, if they have any.  And if I can answer it.

Q:  Do you remember how you felt when your sibling first got her feeding tube?
A:  I was sort of curious and eager to learn about it and sort of impressed by her feeding tube.  She looked a little different, but she was still really cute.

Q:  Do your mom and dad ever worry about the tube (seem worried or struggle with the tube)?  Do you think it is hard for your parents to have a kid with a feeding tube?
A:  Sometimes

Q:  What’s one thing you don’t like you don't like about the tube?
A:  Sometimes if the pump beeps a zillion times and we can’t figure out why, it’ gets on my nerves a little.

Q:  What’s one thing you like about your sibling’s feeding tube?
A:  I like that she’s happy about it.  I also like that it keeps her healthy.  I also really liked giving a presentation at school about feeding tubes. 
http://agirlandhertube.blogspot.com/2012/02/feeding-tube-awareness-week-day-7.html

 

Cole and Ashtyn are the children of Brandis Goodman, Chief Multimedia Momma of the Feeding Tube Awareness Foundation.  Brandis is also the author of the blog, Feeding Raya: The Story of a Girl and Her Feeding Tube (http://agirlandhertube.blogspot.com/ ), which has been named a Top Special Needs Site.

 

A Resource Guide for Enteral Formula Coverage (By Traci, Founder)

by Feeding Tube Awareness Foundation on 04/10/14

This article appeared in Complex Child e Magazine (April 2014) 


Getting insurance to cover medical foods, including enteral formula, isn’t a new problem.  However, there seems to be an increasing number of insurance companies that are choosing not to cover medical formulas, despite the medical need.  As we all know, these formulas can be very expensive and it can be a real financial hardship for families if they need to cover the expense of medical foods.  There can be real medical consequences for children who require more specialized formula if that formula is no longer available to them for financial reasons. 

Here are some tips and resources to help navigate regaining coverage or finding alternative means to get the specialized formula prescribed for your child. 


Check Your State Laws

There are currently 13 states (Arizona, Connecticut, Illinois, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Oregon, Rhode Island, Texas) with laws mandating enteral formula coverage.  However, some are written more broadly than others in that they may name specific medical conditions or have age limitations.  

South Dakota doesn’t have a law, but it has an insurer’s agreement among several companies to cover amino acid-based formulas.   Washington has a bill before the Governor now that is expected to be signed, and there is currently a bill that will be voted on in Pennsylvania. 

For the most up to date information see the American Partnership For Eosinophilic Disorder’s page on state laws.


Health Insurance Appeal

The first course of action is to appeal the denial.  You should get letters of medical necessity from the appropriate specialists or other medical professionals that detail why your child requires this formula for his/her medical condition, and states the possible medical consequences if your child isn’t able to continue to use the prescribed formula. 

There are templates available from many formula companies: 

 

Government Programs

WIC and Medicaid cover a number of enteral formulas.  These programs are based on family income and geared towards lower income families. 

Children under 5 may qualify for WIC.   To find out more, see these links:

 Medicaid eligibility varies from state to state, but all very low-income families are eligible.  To find out more, visit these links

Children with significant special needs, disabilities, or medical issues may qualify for Medicaid Waivers.  Medicaid Waivers allow Medicaid to become the secondary insurance for children who have qualifying health needs.  Each state has a number of different waiver programs. It may take asking some questions of other parents or calling agencies to figure out which program you need to apply for and to determine if your child will qualify.  Visit Kids' Waivers for a comprehensive list of programs by state.  


Check with Human Resources

If your health insurance plan is provided through a mid-size to larger employer, there is a good chance it is a self-funded plan.  A self-funded plan is one where the employer pays for the benefits that employees receive directly.  Self-funded plans do not need to follow the state laws on formula coverage, though most do.  In a self-funded plan, the employer has the option of overriding a denial to provide coverage.  It is worth talking to the Human Resource department and sharing your child’s medical need, the financial burden it will place on your family, and the potential medical consequences if coverage is denied.  You may need to provide additional documentation from medical professionals.  


Patient Assistance Programs

Some formula makers have patient assistance programs to help families get formula at reduced rates or even free if they can document a significant financial need.  You can ask your doctor or nurse practitioner if they have the forms for patient assistance programs.  Medical professionals do need to complete parts of the form for you.  Some offices will submit them for you, once you provide the needed financial information. 

You may also find the forms yourself by Googling “Patient Assistance Programs” and the company that makes the formula. 

Here are some links to some program applications and information:

  • Nutricia (Neocate, Ketocal, and many others)  
  • Mead-Johnson (Enfamil, Nutramigen, Pregestimil, and many others) --
  • Abbott Nutrition (Pediasure, Elecare, Similac, Alimentum, and many others)  
  • Nestle (Boost, Compleat, Peptamen, Nutren, Vivonex, and many others) - call (847) 808-5300

The Abbott program is not currently taking new applications due to the large demand that they are currently fulfilling through the program.  However, it is worth checking back to see if they are starting to accept new applications.  You can contact the Abbott Nutrition Patient Assistance Program at 1-866-801-5657 to inquire about the program. 


Medical Supply and Formula Exchanges

There are a number of medical supply and formula exchanges where people list their no longer needed supplies for the cost of shipping and possibly copay costs.  This isn’t a long-term solution, but you may be able to use these exchanges while you are working out longer-term solutions for enteral food coverage.  A list of exchanges is available here.  


Additional Resources

For elemental formula coverage, the American Partnership for Eosinophilic Disorders has a very comprehensive guide to coverage and great links.  

 

Traci Nagy is the Founder of Feeding Tube Awareness Foundation, a 501(c)(3) non-profit charitable organization and the Feeding Tube Awareness facebook page.  She is the recipient of the 2013 Lyn Howard Nutrition Support Consumer Advocacy Award from the American Society of Parenteral and Enteral Nutrition and Mom to Super Tubie, Lucas.  

The Story of the Feeding Tube Awareness Foundation (by Brandis, Chief Multimedia Momma)

by Feeding Tube Awareness Foundation on 02/11/14

In August 2008, Traci Nagy heard her 8 week old son’s doctor utter two words that simultaneously struck fear and relief into her heart: feeding tube. Prior to that day, her only point of reference for feeding tubes was tragic end-of-life stories that hit the mainstream media. Now she found herself being thrown into the world of tube feeding, which she quickly learned did not necessarily equate with the end of life. With nowhere to turn for moral support as she navigated through months of testing, hospital stays, and daily life with a tube fed child, Traci yearned for a way to connect with others who could relate to what she was going through. The journey was lonely, but was made more difficult by labels like “failure to thrive,” well-intentioned but misguided advice from friends and family, and the strangers who stared at what was obviously a medical device taped to her infant son’s cheek. In the midst of all the negativity she felt coming from those around her, she saw what tube feeding was truly about. It was literally saving her son’s life. Not only did it keep him alive, but it allowed him to grow, develop and thrive. This new understanding of what tube feeding could do for a child who struggled to eat ignited a new passion in Traci, and a desire to show the world that the general perception of feeding tubes was wrong.

In an effort to try and share the positive side of tube feeding with the world, Traci first started an online campaign to get a tube fed child on Sesame Street. Although that effort did not produce the desired result, it didn’t deter her from pushing forward in her efforts to rebrand the feeding tube as a life-saving medical device and increase awareness in order to change public perception. In October 2010, Traci came up with the idea to hold a Feeding Tube Awareness Week. She posted her idea on the My MIC-KEY facebook page and they liked it. With that, the Feeding Tube Awareness Foundation started to take shape.

Traci got to work building an organization that could support Feeding Tube Awareness Week. She built a website and started a facebook page. A board of directors was established and a volunteer staff comprised of other parents of children with feeding tubes began supporting Traci in carrying out the Foundation’s mission. Parents began flocking to the facebook page in droves, thrilled to find support in the form of other parents who understood what life with a feeding tube was like.

In 2011, the first official Feeding Tube Awareness Week was held and the “I heart a Tubie” and “Super Tubie” merchandise were launched. Since then, the expansion of the Feeding Tube Awareness Foundation has been moving steadily forward with the mission to provide practical information on the day-to-day life with a feeding tube, and to raise positive awareness of tube feeding so that ALL who rely on feeding tubes can get the support they need. The website is continually expanding to include any and all information that parents of children with feeding tubes need. The Feeding Tube Awareness Facebook page is the largest online support group for pediatric tube feeding in the world with nearly 17,000 “fans” and counting. Volunteer staff members dedicate countless hours each week to answering every question asked on the facebook page, constantly striving to improve the quality and quantity of information provided on the website, and building relationships with providers of services that are vital to those with feeding tubes. All of this is done while balancing careers, families, educational pursuits, and caring for their own medically complex children.

As a parent-to-parent organization, the FTA staff truly understands what life is like with medically complex children and as such, understands the value of public awareness of tube feeding. Greater awareness means that parents find the support they need more quickly and feel less alone and scared. It means that family, friends and strangers have more compassion and understanding. It changes public opinion and by doing so, it changes the experience of tube feeding. Awareness matters in very real and tangible ways.

Brandis Goodman is mom to 4 year old tubie Raya and her soon to be 4 siblings. She currently serves as the Chief Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers as a Tubie Friends Surgeon. Her blog “Feeding Raya” is a Top Special Needs Site. In all of her spare time, she has returned to school to pursue another degree.

The Mealtime Approach, Part 2 (By Traci, Founder)

by Feeding Tube Awareness Foundation on 12/03/13

This is the second blog in a series on the 2-day seminar given by Dr. Suzanne Evans Morris on Feeding the Whole Child, A Mealtime Approach.

The first blog http://www.feedingtubeawareness.org/Blog.html?entry=the-mealtime-approach-part-1 discussed taking a step back and thinking about feeding as a mealtime and reducing the stress around mealtime and the tactics we use to feed our children.

Dr. Evans Morris set forth a framework on how to think about a mealtime. First and foremost is Comfort. From a tube fed child perspective, GI comfort weighs heavily on this. We need to address the medical issues in order for children to have the desire to eat. Who feels like eating when they are constipated, their throat burns from vomiting, or their tummy is full of food from a meal hours ago.  We need to address the medical issues and we need to get the tube feeding bit right, for the oral eating to improve. This means having tube feeds that are well tolerated, in addition to having feeding schedules that accommodate oral eating. I know from my own personal experience that my son’s oral eating improved and we were able to make more headway on oral aversions once we got the tube feeding right and he felt better.

There is also a significant sensory component to comfort. Many children who are tube fed have sensory issues. Dr. Evans Morris discussed what I think is a more novel approach to improving sensory issues. She uses music in her practice with great success. Not just any music, but music that uses certain frequencies designed for sensory integration and learning. She also feels there is a rhythm to eating that is enhanced by music tempo. Music is also relaxing. This really appealed to me. My son has significant sensory integration issues and we use therapeutic listening to help with sensory processing and motor coordination. I had never put it together with feeding skills. But, it makes sense that if it helps sensory processing and learning that it would carry over to learning to eat and the sensory experience of eating. Dr. Evans Morris likes Hemi-Sync. She has a list of the CDs she likes on her site (link below). What she made very clear is that parents and therapists need to like the music – be it Hemi Sync or other music, since you will be listening to it to. Hemi-Sync CDs are offered many places, including Amazon.

With infants and young children, she said try humming. Humming creates a gentle vibration that is very soothing. Humming also is a great stress reliever for adults. We did an exercise where we hummed and reported how we felt after. I wasn’t expecting to feel calmer, but I did. Humming helps organize sensory input.

Her case studies also mentioned more common sensory inputs like deep pressure/joint compressions, swinging, do movement/heavy work. I personally did a lot of these things, including brushing in my son’s physical, occupational and feeding therapy. It is worth reading up on sensory processing disorder, sensory integration disorders, if only to understand more about treating sensory issues.

Another tactic that Dr. Evans Morris has found useful is giving a small water bolus about 30 minutes prior to a meal. It helps prepare the stomach for food and also can serve to calm a child because water is so well tolerated.  All of these things in combination increase comfort.

Next is Confidence.  Confidence is about creating an interest and curiosity about food while maintaining the trusting partnership. She talked about creating environmental opportunities for food exploration. Eating at a table and having food available with no pressure to eat it. Maybe discussing how interesting the food is – color, texture. Or having a child help prepare some of the food or get involved in the mealtime. This also reinforces our kids who are tube fed eat what the family eats (when it is medically safe for them to do so). Parents who are desperate for their children to eat will allow them to eat anything, even if the variety of what they eat dwindles to a few foods.

I feel like this is an area where I can improve.  Since so much of my son’s oral eating is at school during the week, our real opportunities would be lunchtime or an early dinner on the weekends (given how early my son goes to bed).  We often have errands or are busy and lunch isn’t always a real sit down meal. My son may eat, and then we may eat before or after. When we do have sit down meals, I am completely guilty of letting him watch a video at the table and serving him the foods I know he likes. I thought I was doing it to keep him engaged, because it is hard to sit at the table and not really eat much. But, we need to do more to have a meal with conversation that reinforces all the positive social things that happen at mealtime that aren’t about the food. And, I need to let him become more curious about foods that are on the table without feeling pressure that he needs to try them.

 Of course, you need Competence – the feeding skills necessary to eat. She discussed that these are often small steps and that challenges have to be “just right.” You can’t expect a child to go from puree to eating a sandwich. There are many small steps in between. She didn’t go into specific techniques, but she has loads of information on her website and I will include links below.

All of this is done in the context of Connections, which is the supportive feeding relationship between a parent and child where a parent pays attention and listens to the child’s cues. This is in contrast to some behavioral approaches that have you ignore the cues your child gives. She also discussed the roles we have in creating a mealtime partnership. As parents, it is our role to provide the food for our children to eat and to be present (not multitasking or doing other things) at meals, so we can participate in the meal with our children. It is our children’s responsibility to determine what they eat and how much. This is a tougher one for tube feeding parents. So often, we are looking for our kids to eat more. But, we have to remember that forcing food doesn’t build a positive relationship with food or increase our children’s desire to eat. Also, with children when you apply pressure, you often get pressure back which makes mealtimes stressful and unproductive. 

She showed us how she does an initial evaluation on a child, and a parent. She focuses on what is working for the child and what isn’t working, as well as what is working for the parent and what isn’t working. It allows you to acknowledge what is working, even if it is a small and start building from there to address the things that aren’t working for both parent and child.

The message in her work is clear. We want children to have a positive relationship with food. We want children to be curious about food and to be self-motivated to eat without external rewards. We want mealtimes to be positive and rewarding experiences for both parents and children.

Here is some food for thought from Dr. Evans Morris:

Increasing Gastrointestinal Comfort - http://new-vis.com/fym/papers/p-feed25.htm

Stress and Mealtimes - http://new-vis.com/fym/papers/p-feed26.htm

Becoming a Mealtime Partner - http://new-vis.com/fym/papers/p-feed21.htm

Expanding Children’s Diets - http://new-vis.com/fym/papers/p-feed13.htm

Changing the Sensory Environment - http://new-vis.com/fym/papers/p-sens5.htm

Food Progressions for Biting and Chewing - http://new-vis.com/fym/papers/p-feed18.htm

Users Guide – Hemi Sync and for Learning and Stress Reduction http://new-vis.com/fym/papers/p-lrn1.htm

And a video of her talking about how Hemi-Sync music has helped in her practice: http://www.youtube.com/watch?v=FsWoKDPuH-g

 

Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 5 year old son Lucas is a Super Tubie, who has the newly named, Koolen de Vries Syndrome.

The Mealtime Approach, Part 1 (By Traci, Founder)

by Feeding Tube Awareness Foundation on 10/30/13

I thought I knew a lot about feeding after five years of ongoing feeding therapy, four feeding therapists, having lived the experience of a child who vomited if food got on his lips to having him enjoy eating (even if it is a work in progress) and having heard other professionals lecture about feeding therapy.

Well, within moments of beginning a 2-day seminar with Dr. Suzanne Evans Morris on Feeding the Whole Child, A Mealtime Approach, my mind was blown. There were things I should have been doing, could have been doing to improve my son’s relationship with food. My thinking about mealtimes and children who are tube fed had been more focused more on the loss – the loss (or acknowledgement) that it is fundamental for a mother to want to feed their child and how emotionally devastating it can be when you can’t, the challenge of keeping a child who can’t eat occupied during a meal, what relatives may say at the holiday table, the separation of a child who is only able to eat a limited diet, etc. But, what I missed was what else a mealtime is really about and it is more than the food.

First, think about a nice dinner you have had – one with friends or family. When you remember the meal experience, it was likely more about the conversation, the enjoyment of a shared social experience, and maybe the food and drink. We watched videos of adult mealtimes and people talked and laughed, and they didn’t pay all that much attention to the food itself or how they were chewing and swallowing. The focus wasn’t on the volume consumed. It wasn’t stressful.

When we have mealtimes with our children with feeding issues, we focus almost exclusively on the mechanics of eating. It is all business. There is pressure to eat what is on the plate or in the bowl. We comment on chewing, swallowing, etc. We don’t enjoy the food or the company and we often don’t use the time to bond or talk with our child. 

I found myself thinking back to the first few months of my son’s life.  He had an NG, we didn’t have a diagnosis other than reflux, FTT and then delayed gastric emptying. I was gung ho on oral feeding. I didn’t understand oral aversions and how my shoving a spoon into his mouth and ignoring all his cues may make those worse. I figured it was just natural for him to eat orally, and I thought feeding therapy was kind of hokey. I remember waiting for him to vomit, because after a vomit he would eat so nicely. This all makes me cringe now. Who wants to eat after they vomit? I did realize soon after that I was likely doing more harm than good and I also noticed that my son began to refuse to eat with me. Of course, this makes a mother feel horrible. I was a ball of stress and I was putting a lot of pressure on him and eating, and he could feel that. It became medically clear that we were in it for the long-haul with tube feeding and my attitude shifted to getting the tube feeds right and increasing his tolerance of tube feeds. It wasn’t until we got to a GJ where, ironically, oral eating became more enjoyable for everyone and we were all less stressed about it.

What Dr. Evans Morris was talking about was a shift in thinking to supporting children with feeding issues at meal times to celebrate food and relationships. Giving kids reasons to want to eat, rather than having a child’s motivation to eat by an external force (like a reward, or pleasing others). A central part of this is creating a relaxing mealtime. One of the things we discussed was the impact of stress on gastric emptying. Wow, this hit home since so many of us have kids with motility issues. Kids can get into chronic stress patterns over eating. When the body is in flight or fight response, motility slows down. It is physiological, but doesn’t it make common sense? Also, if you think about when you are in that state of mind, do you learn anything? Well, no. You are focused on getting out of the situation; you aren’t going to learn how to eat better.

So, how do we create a relaxing, stress free mealtime? Dr. Evans Morris explained that we start by thinking of the mealtime as a partnership, where our child has an equal role. We, as parents (or our therapists), have to honor our child’s cues or what they are telling us. We have to build (or build back) trust. My big “a ha” moment was an exercise where we had to eat applesauce. First, we ate applesauce feeding ourselves with a spoon. Next, someone fed us applesauce. It was a completely different mouth feel. The spoon became really obvious, the applesauce and taste less obvious. Next, we fed our partner watching for their cues of when they were ready to accept food. This was really hard. I found myself focusing on the position of the spoon, how much was on the spoon and I missed looking at the eyes. I didn’t always wait for the other person to lean forward signaling they were ready for more. When I was being fed, I felt pressured to swallow and I found that I couldn’t manage to do that. I was overwhelmed by the volume in my mouth. I turned my head away. I didn’t look at my feeder. We then had to feed each other ignoring cues completely. WOW. My feeder was putting the spoon on my lip to make me open my mouth and I really didn’t like that. I cringed, she put more on the spoon. I wouldn’t have known if it was applesauce or another fruit. I was so focused on getting the food out of my mouth, I didn’t care. If it was more socially appropriate for me to have spit it out in the middle of a conference, I likely would have. Have I done this to my son? Looking back, absolutely. I have been guilty of pushing on the lip to open the mouth, putting more on the spoon and trying to feed faster when he was being accepting of food. I bet most parents are. You should definitely try this at home. You need to experience it for yourself. I don’t think I would have learned the lesson if someone just told me to put myself in my child’s place, because I already thought I was more empathetic to his situation than I really was.

I know that in thinking back I wasn’t as attentive to the cues my child sent me with oral eating and I was pretty motivated to ignore them, at times. In the end, we want our kids to have a positive relationship with food and a desire to eat. Pay attention to the subtle cues your child sends you, or what your child says if they are verbal. Notice that when you ignore those cues, they get bigger. 

This may also require a change in perspective for some parents, but one of the great things about tube feeding is that it can take the pressure off of oral eating enough to allow children to develop good oral skills and a good relationship with food, so that they become better oral eaters.

One of the things I really loved about this approach is that is focuses on the enjoyment of eating as the end goal, not achieving a certain volume of food eaten. It is eating for pleasure, and the rest follows.

This is the first in a series of blogs about the seminar. More to come! 

Further Reading from Dr. Suzanne Evans Morris:

Becoming a Mealtime Partner -  http://new-vis.com/fym/papers/p-feed21.htm

Communication at Mealtimes - http://new-vis.com/fym/papers/p-lrn3.htm This is a comprehensive overview of all the cues that infants and children use to communicate their needs at mealtimes.

 

 

Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 5 year old son Lucas is a Super Tubie, who has the newly named, Koolen de Vries Syndrome.

13 Things You Need to Know When Traveling With Medical Liquids (By Brandis, Chief Multimedia Momma)

by Feeding Tube Awareness Foundation on 10/10/13

From time to time, headlines in the news highlight stories of people who run into trouble while traveling with medical supplies and liquids. These stories can be scary for anyone who is considering flying with these items, but don’t let your fear of the TSA screening process stop you from traveling. While there are no guarantees that everything will go perfectly, ample preparation ahead of time will greatly reduce your risk of difficulty with the screening process. Here are a few things to keep in mind when preparing to travel.

1. You can and SHOULD call the TSA Cares hotline before your trip. The purpose of TSA Cares is “to assist travelers with disabilities and medical conditions.” According to the TSA’s website, it is recommended that passengers call the hotline 72 hours prior to traveling. Representatives at TSA Cares are able to give advice specific to each individual’s particular needs that will aid in the security screening process, and give the traveler a better idea of what to expect when they arrive at the security checkpoint. Moreover, the TSA Cares program can provide a TSA agent to escort the traveler through the airport and assist in the screening process. The hotline’s toll-free number is 1-855-787-2227 and the email address is TSA-ContactCenter@dhs.gov. The hotline’s hours of operation are Monday-Friday from 8am-11pm EST and weekends and holidays from 9am-8pm EST. More information can be found at www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions

2. Use the TSA’s Disability Notification Card. This card can be printed from this link (http://www.tsa.gov/sites/default/files/publications/disability_notification_cards.pdf ) and handed to a TSA agent upon arriving at the security checkpoint to make screeners aware that you will need some type of additional consideration during the screening process. The card will not get you out of any part of the screening process, but it will discreetly alert them to your needs and hopefully help the process to go more smoothly.

3. You CAN carry more medical liquids through security than would be allowed through the 3-1-1 rule. Medical liquids such as formula, breast milk, baby food, and liquid medications are allowed through security checkpoints. (http://www.tsa.gov/traveling-formula-breast-milk-and-juice) The TSA website warns, however, that travelers carrying medical liquids MUST declare medical liquids at the beginning of the screening process due to the additional screening measures required. If you or your child require a specialized ready-to-feed formula that cannot be purchased at a retail store in the event that checked baggage were to get lost, it is a good idea to carry enough formula on board for 2 days. (see #11 for blenderized diet suggestions) That would hopefully allow enough time once you’ve reached your destination to make emergency arrangements with your supply company or find someone local to the area you are visiting that could spare enough extra to hold you over until your baggage arrives. Any necessary medications should ALWAYS be brought in carry-on luggage.

4. For longer trips, ship supplies and formula to your destination ahead of time if possible. This will prevent you from having to pack all of your needed supplies in your checked luggage.

5. Check with your airline about waived baggage fees for medical supplies. Most airlines that charge fees for checked baggage will allow one bag of medical supplies to be checked without paying the usual baggage fee. You may still want to pack one or two days’ worth of supplies in a separate checked bag as well, just in case the medical supply bag arrives late.

6. Pack your liquids last. If they are the last thing you put in your carry-on bag, they will be easily accessible when it’s time to go through security. Put everything in zippered plastic bags so that when you get to the security checkpoint, it will be easy to pull them out without having to dig through your whole carry-on bag.

7. Print all of the TSA policies that pertain to what you’re carrying with you. While the TSA works to ensure proper training for all its agents, there is always a chance that you will encounter an agent who does not have experience with or a thorough understanding of the policies pertaining to medical liquids and supplies. Print any policies from their website that may apply to your situation and keep them in a zippered plastic bag inside the same bag with your medical liquids where they are easily accessible. If anything comes into question, you can quickly identify the policy that pertains to that item. It is also not a bad idea to have a letter from a physician listing the medical liquids, supplies and equipment that you will be traveling with that may affect the security screening process.

8. Don’t send your liquids through the x-ray machine in a closed carry-on bag. If you have your cans or bottles of liquid formula and medications in zippered plastic bags, it’s easy to pull them out and put them in one of the plastic tubs provided at security. (The plastic bag will also keep them from getting dirty since people put their shoes in those tubs too.) If you have a soft cooler with medical liquids and ice packs in it, unzip and open it before putting it through the x-ray machine and set it into one of the provided plastic tubs. Before any of your medical liquids go through the x-ray machine, make sure that the TSA agents who are doing the x-ray screening see what you have and hear you say that you are sending medical liquids through the machine so they know what’s coming before it pops up on their viewing screen. Most other medical supplies, such as syringes, pump bags, extension tubes, and medical tape can go through the x-ray machine.

9. It’s okay to ask your TSA screener to put on a clean pair of gloves before handling your medical supplies. Ask nicely, and insist if you need to. Explain that because of the individual’s medical conditions, you are doing everything you can to avoid contact with germs and cross-contamination. It may be a good idea to remind them to put on fresh gloves after coming into contact with your medications as well.

10. When you travel with medical liquids, you WILL be asked to open them, or they may be opened for you. The TSA’s website states, “Liquids, gels, and aerosols are screened by X-ray and medically necessary items in excess of 3.4 ounces will receive additional screening. A passenger could be asked to open the liquid or gel for additional screening. TSA will not touch the liquid or gel during this process. If the passenger does not want a liquid, gel, or aerosol X-rayed or opened for additional screening, he or she should inform the officer before screening begins. Additional screening of the passenger and his or her property may be required, which may include a patdown.” (http://www.tsa.gov/traveler-information/medically-necessary-liquids , 2nd paragraph) If you are carrying ready-to-feed liquid formula in cans or tetra paks, know ahead of time that you will most likely have to open them and bring something to pour the formula into, such as a spare feeding pump bag or empty baby bottles with tight-fitting lids. Even an empty plastic water bottle will do. To avoid concerns over opened formula spoiling, travel with a small soft cooler and ice packs. Opened formula is good for 24 hours when it is kept refrigerated. Medications will need to be opened and tested as well. Even though the TSA doesn’t require it, it’s a very good idea to put bottles of liquid medications in zippered plastic bags in case of spills. It’s also a good idea to make sure the lids are on tight after they’ve been tested and before you put them back in your carry-on.

11. Frozen items do not count as liquids as long as they are frozen solid. The TSA website states that “Frozen items are permitted as long as they are solid and in a ‘frozen state’ when presented for screening.”  (http://www.tsa.gov/traveling-formula-breast-milk-and-juice) This includes ice packs used to keep formula and medications cold. However, if they are at all thawed or slushy, they will be subject to the rules and regulations for liquids. (http://www.tsa.gov/traveler-information/medically-necessary-liquids , 3rd paragraph) For individuals who use a blenderized diet or breast milk for tube feeds, this would also mean that pre-blended formula or breast milk that has been frozen solid would be permitted without being subject to the additional screening for liquids as long as it is not partially thawed.

12. Allow extra time in case you run into delays at security. Of course this is advised for all travelers, but going through the security screening process with larger-than-usual quantities of medical liquids and individuals with special needs means can take extra time. Find out the recommended arrival time for the airport you will be departing from and add an extra half hour or hour to it, just in case. You may end up sitting at the gate for a longer time than you’d like, but that is much better than missing your flight. If you have allowed ample time before your flight, you will not have the added stress during the security screening process of wondering if you’ll miss your flight or not.

13. Be polite. Patience and a positive attitude can go a long way in helping the screening process go smoothly.

Links to TSA Policies: 

 Other helpful links:  

 

Brandis Goodman is mom to 3 year old tubie Raya and her 3 older siblings. She currently serves as the Chief Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers as a Tubie Friends Surgeon. Her blog “Feeding Raya” is a Top Special Needs Site. In all of her spare time, she has returned to school to pursue another degree.

An Open Letter to Medical Professionals on Tube Feeding

by Feeding Tube Awareness Foundation on 09/23/13

Here at the Feeding Tube Awareness Foundation, we are parents of children who are tube fed. We also have thousands of parents who share information, knowledge and experience on tube feeding every day. These are some of our thoughts to keep in mind as you work with our families.

  • We are entrusting you with our child’s health. Think of your own children, nieces, nephews or friends’ children. A little bit of caring will go a long way in treating not only the child, but in reassuring scared, often sleep-deprived parents. Moreover, listen to what parents are telling you about what their child is experiencing.  

 

On Parents New to Tube Feeding:

  • Be careful about giving estimates about how long a child is going to be tube fed, if the underlying medical conditions aren’t fully known. It sets up expectations for parents and they can feel blindsided if things do not work out as you said. Moreover, it is better to prepare them for the journey ahead, which is likely to include testing and may include oral feeding challenges.

 

  • When you give parents a feeding schedule, give them one that is sustainable at home. Many are given a starting feed schedule of bolus feeding every 3 hours, round the clock. This may work in the short-term, but we all need to sleep for longer than 2 hours at a time. Moreover, parents need to learn how to adjust their day-time schedule (which may involve other children) to feed every 3 hours. It takes time for parents to build up the confidence to feed anywhere or ask your permission to do a continuous overnight feed, so they can sleep.  

 

On Feed Intolerance:

  • Please address feed intolerance in a meaningful way. It isn’t enough that a child is gaining weight, if they are having issues with feed intolerance. Vomit, retching, constipation, diarrhea, discomfort, etc. impact quality of life. Moreover, not only are they signs of underlying medical conditions that may need to be addressed, but they can really increase oral and food aversions. Make sure parents know that these things aren’t just expected when you tube feed. Take a look at what is being fed (whole protein/peptide/elemental/blended foods), calories per ounce, the feed schedule (bolus/continuous/intermittent), and address potential medical issues, etc. A formula switch is a quick fix, that doesn’t always tackle what can be a multifactorial issue. Have parents keep logs or food journals, so you can see how different changes impact tolerance. 
  • Think about the ability of the body to process high calorie formula.   We know that medical professionals recommend high calorie formulas for kids with volume intolerance. But, the volume intolerance is goes part and parcel with dysmotility. Kids with dysmotility often have hard time tolerating high calorie formulas. Some are better able to tolerate lower calorie formulas at higher volumes. Moreover, when increasing calories per ounce, make sure parents understand that their child will need additional free water to make up for the loss of water in the formula. Less free water = more constipation = more feed intolerance.  
  • Tell parents to adjust feeds when children are sick. We don’t eat the same foods at the same rate and volume when we are sick. It takes time even after an illness to feel like eating as much or as often. Motility slows and hydration becomes more important (especially with fever, increased vomit, diarrhea, etc.). Feeds need to be slowed down, calories per ounce need to be cut, and Pedialyte or other oral hydration solutions, may be recommended. Reassure parents who are concerned about their children’s weight that their child will recover better if their feeds are tolerated and if they are hydrated. Increased vomit or diarrhea doesn’t help a child feel better or gain weight.

 

On Testing:  

  • Don’t just label it reflux and move on. While reflux is an issue, it isn’t typically the only one in a child who requires a feeding tube. Vomit is a vague symptom of many conditions. Investigate what is causing a child to stop eating or have difficulty eating enough. Check for motility issues, food allergies, Eosinophilic Disorders, structural issues, etc.  The wait and see approach may be OK for a couple of months, but not longer. 

 

  • Involve other specialists and think outside the box. It is a whole new world of rare conditions out there with the mapping of the genome and more cost efficient genetic testing. Just because a child doesn’t fit a profile of the known disorders, diseases, etc. that you have seen before, doesn’t mean there isn’t a diagnosis out there for them.  

 

 

On Motility Issues:

 

  • Don’t move kids to a GJ if they haven’t failed continuous G feeds. (The obvious exception is when a child is aspirating secondarily into the lungs and the GJ is being used instead of a Fundoplication). We hear from a lot of parents who are concerned about continuous feeds when moving to a GJ. You may be able to avoid a GJ by addressing feed tolerance issues with the G, including trying continuous G feeds. GJs are fabulous when you really need them. But, they are a much harder tube for children and parents. It means exposing children to sedatives (in many hospitals) and x-ray exposure with every GJ change. They are more problematic if they get pulled out, because they can’t be replaced at home. It can also be emotionally traumatizing for a child to have a procedure done so regularly. Moving to a GJ, should be done when the options are exhausted with G feeds.

 

  • Make sure you test for delayed gastric emptying/gastroparesis BEFORE performing a Nissen Fundoplication.  This should go without saying, but we hear from a number of parents whose children are having difficulty with feed tolerance, retching, vomiting past the nissen, slipped nissens, etc. who learn that their child has motility issues.

 

 

On Oral Eating:

 

  • Don’t de-emphasize oral eating, if it is safe for the child to do so. Recommend parents to feeding therapy, stress keeping oral skills alive (even for those who are NPO), and make room in the feeding schedule for oral eating. Prepare parents that their children aren’t likely to eat the same amount when they are being tube fed, because they are taking in more calories than they were before the feeding tube (this is especially true of many children who are failure to thrive beforehand).

 

  • Have a plan for weaning, but don’t implement it until a child is really medically safe to eat or drink all their nutrition and hydration.  It is great when we hear of medical professionals who help guide their patients to greater oral eating and drinking. There are many children who safely wean at home or with the use of programs, to remain oral eaters after that. No question. But, we hear of too many cases where children are being pushed to wean, or have been weaned, only to learn that there is an unresolved medical condition that is preventing them from eating.   

 

 A great specialist, doctor, nurse, dietician and nutritionist can make all the difference to a child and family. We are forever grateful to those who care for our children like they would their own. Thank you for what you do. 

 

 

Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 5 year old son Lucas is a Super Tubie, who has the newly named, Koolen de Vries Syndrome.

 

Tips for Tube Feeding at School

by Feeding Tube Awareness Foundation on 08/18/13

Many kids are tube fed at school. Some kids are able to eat orally during their school day. But, either way parents must make sure that the protocols they set in place are being followed. 

Write it into the IEP or 504 Plan:

  • The IEP is an appropriate place to include a child’s tube feeding regime – from how they should be fed at school, be it via their feeding tube or orally. 
  • If your child does not have an IEP, then you will need to get a 504 plan. A 504 plan is specific to medical issues. Here is a good resource:  http://specialchildren.about.com/od/504s/f/504faq1.htm
  • If your child needs assistance during meal-time, even for oral eating, it should be written into their IEP or 504 plan.
  • Sometimes you need doctor’s notes or instructions. 
  • If your school wants an IHP – Individual Health Plan for the school nurse, it is a good opportunity to give them the details of how to care for your child. However, you should know that they aren’t legal documents that the school has to abide by.  So, make sure if you do an IHP, you also have an IEP or 504 plan stating what needs your child has. 

Safety:

  • Give the school information on safe handling procedures – clean hands before venting a child/attaching an extension set, making sure that any tubing is out of the way during toileting/diaper changes, tube sites shouldn’t be touched, etc. 
  • Make sure you understand the school’s policy if a feeding tube is pulled out. Some schools will have a nurse replace it, but many will not. It is important for there to be clear directions on who to call (or how to proceed) in the event that this happens.
  • If children are active during the school day or receive physical therapy and there is going to be a possibility of sliding on the tummy or similar activities, you may consider protecting the tube site with an ace bandage or g-tube protective belt.

Feeding:

  • If your child is an oral eater, provide any information to the teacher about food allergies, unsafe foods, aspiration risks, etc.  You can state that only food you send in should be served to your child. 
  • Talk to the teacher to find out if any foods will be used in art projects or if there are class cooking projects to determine what, if any, limitations your child may have from participating in those activities. (i.e. kids with allergies, or are NPO, may need an alternate activity or materials)
  • Write down the instructions for your child’s feeding regimen. Be specific about volume being fed, over what period of time, etc. Offer to train staff – be it a nurse, nurse assistant or aide on tube feeding your child. Make sure at least 2 people are trained. 
  • Many schools have rules about what feeding practices they will allow. Make sure you find out in advance any specific limitations your school district or school location has in place. Pump and gravity feeds are typically not a problem, but parents may encounter some issues with feeds given by syringe.
  • If you are sending in supplies – make sure they are clean and clearly labeled for your child. See if the school nurse or teacher will hold back-up supplies.
  • If you are sending in a venting tube to stay at school, make sure that you discuss cleaning with the school nurse, aid or staff.  During the school year, you can ask that it be sent home so you can evaluate if it needs replacing.
  • Make sure that food or formula is in a cool pack with an ice pack if it needs to remain cool during the day.
  • If you are sending a pump and backpack, make sure that staff understand how to troubleshoot alarms. And, make it clear that turning the pump off and not feeding your child, isn’t an acceptable solution.

Bus Travel:

  • If your child has a feeding pump, it will most likely have to be turned off during bus rides. Make sure there is a dedicated person (and a back-up) who is responsible for turning it back on.

For additional resources - http://www.feedingtubeawareness.org/TubeFeedingAtSchool.html

Please feel free to share what you have learned about tube feeding in school in the comments!

Safer Enteral Connections

by Feeding Tube Awareness Foundation on 07/17/13

As many of us know, tube feeding connections aren’t always the best. Med ports pop open, bags disconnect from extension sets and some syringes fit better than others. But, these connections have posed serious safety and health concerns because enteral connectors fit into other medical tubing. This has caused frightening and evenly deadly situations in hospital settings.

As a result, for the last few years there has been a lot of work going into implementing a system where enteral connections will only fit feeding tubes.  In the next year or so, you will likely see this playing out in your medical supplies.

What does this mean for us?

  • Hopefully, greater patient safety because connections will be specific to the system, so it will eliminate misconnections.
  • It means that the design of connections on extension sets, med ports and feeding bags will change. We feel this will be very positive in that these connections will be more secure and will not easily open, as they do now.
  • It will mean that syringes will be specific to feeding tubes and will differ than those used for other systems.

We will keep you updated as we learn more. We will also share information from the manufacturers of enteral products on their roll out of new product designs. This process will take time, but we feel it is going to be a positive move for us all.

Answering Hard Questions (By Brandis, Chief Multimedia Momma, with contributions from the FTA Staff)

by Feeding Tube Awareness Foundation on 06/17/13

Nearly every parent of a child with a feeding tube will be asked questions. Sometimes the questions are from a place of genuine curiosity and interest, and sometimes they are hurtful or shocking because of the way they are phrased or the tone in which they are asked. When parents are still in the early phases of tube feeding, it can be difficult to answer the questions asked by family members, friends, and complete strangers. Even the most well-intentioned questions can be upsetting when they are asked at the wrong time. People often speak without realizing how they are coming across, and unless they have been through very similar circumstances, it is very difficult for them to understand how the things they say can exacerbate the emotions you are already feeling. It is completely okay to respond to any question or comment with, “I’m sorry but I really don’t feel like talking about this right now.”

 

Just as important as the answer you give is the tone with which you give it. Part of our mission at the Feeding Tube Awareness Foundation is “to raise positive awareness of tube feeding so that families have the support they need.” (http://www.feedingtubeawareness.org/about-fta.html) Many times, people ask questions because they’ve never seen a feeding tube before and they’re curious. Your answer will set the stage for how they view feeding tubes. It’s difficult to put a positive spin on the situation when your own emotions are in turmoil, but if you can respond with a positive attitude and focus on the benefits it provides, the person you’re talking to will pick up on that.

 

Here are some of the commonly asked questions and a few suggested answers.

 

Question: What’s wrong with him?

Answer #1: He has a medical condition and needs a feeding tube in order to get enough nutrition. There’s nothing wrong with him though, we love him with or without the tube!

Answer #2: He has some medical challenges and we’re working with specialists to figure out the best way to handle them.

 

Question: Is that an oxygen tube on his face?

Answer #1: No, it’s a feeding tube.

Answer #2: No, that’s his feeding tube. He has trouble swallowing, so he gets all of his food through the tube.

 

Question: Are you sure she won’t eat? Have you tried giving her ice cream? All little kids love ice cream!

Answer #1: Actually, she has severe food allergies and it’s not safe for her to have ice cream.

Answer #2: She’s not able to swallow safely and if we gave her ice cream, it would go directly into her lungs and cause pneumonia.

Answer #3: She has a difficult time with certain textures and temperatures of food, and if we try to feed her things she’s not comfortable with, it will make things worse. We’re working with therapists to help her overcome her oral aversion.

 

Question: What a cute backpack! Where did you get it?

Answer #1: Thank you! It came from our medical supply company.

Answer #2: Thank you! It’s a feeding pump backpack and we got it from our medical supply company.

Answer #3: It’s from ______________ (Target, Walmart, Amazon, etc.).

 

Question: Is that a leash?/Why do you have your child on a leash?

Answer #1: No, it’s not a leash, it’s a feeding tube. Her formula goes from the pump inside this backpack through the tube and into her stomach.

Answer #2: She’s not on a leash, she has a feeding tube. Her backpack makes her tired so I’m carrying it for her to give her a break.

Answer #3: The backpack has her feeding pump in it but her balance isn’t quite good enough yet for her to carry it by herself.

 

Question: Does he really need a feeding tube? He looks so healthy.

Answer #1: He’s healthier right now than he’s ever been, thanks to the feeding tube!

Answer #2: As long as he has his feeding tube, he’ll stay that way!

Answer #3: He’s come a long way since he got his tube. It’s the reason he’s doing so well right now.

 

Question: When will she get rid of the tube?

Answer #1: We really don’t know. It could be a few months or it could be a few years, and we’re so thankful that we have a way to keep her nourished and growing until she’s able to eat enough that she doesn’t need it anymore.

Answer #2: She’ll probably always need the feeding tube, and we’re okay with that.

Answer #3: When she can eat enough food and a wide enough variety of food to meet her nutritional needs, drink enough fluids, take all of her medications by mouth, get through a cold and flu season without using the tube at all, and go for 3 to 6 months without using the tube at all, then we’ll be able to remove it.

 

Question: Well if he’s eating food now, why does he still have the tube?

Answer #1: I know it looks like he’s eating, but he doesn’t actually swallow the food yet so he still needs the tube.

Answer #2: He eats a little bit of food but he won’t eat enough to make him grow, and he doesn’t drink enough water to stay hydrated.

Answer #3: Because of his food allergies, he’s only able to eat two foods right now so that’s not enough to give him the nutrition he needs.

 

Question: Will you be ordering anything for him? (At the restaurant)

Answer #1: No, thank you. He has a very limited diet so he doesn’t need anything/We brought food that is safe for him to eat.

Answer #2: No, thank you. He gets everything he needs through his feeding tube.

Answer #3: No, thank you. He’s not able to eat food, but could you please bring him a cup of crushed ice?

 

Question: How do you do it?/I don’t think I could handle that.

Answer #1: You would do the same, you just haven’t had to.

Answer #2: We take things a day at a time.

 

Question: Is he eating yet?

Answer #1: Not yet, but he will when he’s ready.

Answer #2: We’re really not focusing on eating right now but when the time comes, we will.

Answer #3: If we get to a point when he’s able to chew and swallow safely, then we’ll work on getting him to eat but there are other things that are more important right now than eating.

 

Question: My best friend’s cousin’s baby had the exact same problem and they did __________ and he’s totally fine now. Have you tried that?

Answer #1: We’re really not sure what’s causing her symptoms yet so we’re working with a team of specialists to try and figure out what’s really going on before we start trying things.

Answer #2: No, but we’ll keep that in mind. Thank you.

 

Question: Has she been tested for ______________ yet?

Answer #1: We’re testing her for everything her doctors feel like we should test her for.

Answer #2: I’ve never heard of that. What are the symptoms?

Answer #3: Yes, she’s been tested for pretty much everything.

 

If you have been asked these or other difficult questions and would like to share your short replies, please leave a comment at the end of the post.

 

 

Tube Feeding: Not a “One-size-fits-all” (By Brandis Goodman, Chief Multimedia Momma)

by Feeding Tube Awareness Foundation on 04/10/13

Cross post with Feeding Raya: The Story of a Girl and Her Feeding Tube (http://agirlandhertube.blogspot.com)

My first introduction to tube feeding was at church. I was in the mothers’ room feeding my baby, and another mom came in with her 7 year old son, who had severe spastic quadriplegic cerebral palsy. She made friendly conversation while she expertly connected a syringe and bolus extension to his G tube with one hand while popping the tab on a can of formula with the other, and then gravity fed him without spilling a drop. Having never seen anyone do a tube feeding in person before, I was intrigued and she was very open in explaining what she was doing. I was impressed by how easy she made it all look, and even more so in retrospect. That was also my first exposure to the fact that older children can live off of formula. Who knew?

My next introduction to tube feeding was through a friend whose baby had been diagnosed with eosinophilic esophagitis and had an NG tube. When she explained more about what his diagnosis meant, I couldn’t help but ask what they were feeding him since there were literally no foods that were safe for him. She pulled a pitcher of Neocate out of the refrigerator. Two years later, I was mixing Neocate to feed my own daughter through her NG tube. I equated feeding tubes with formula.

I don’t remember when I first heard of putting pureed food through a feeding tube, but it made sense to me. The people I encountered that were doing a fully“blenderized diet” for their children had very compelling stories about why they chose to feed their children “real food” as opposed to commercial formulas. At one point, we were experimenting with blenderized food but it never really got off the ground for us. Making blended food that was a small enough volume with high enough calories and the right balance of nutrients was difficult for me. Plunge feeding it into a very active toddler who wouldn’t keep her hands to herself while trying to manage mealtime with 3 other kids never went well either. Before long, gastric dysmotility and multiple food allergies squelched my attempts at partial blenderized diet. It was disappointing. After having read so many accounts of mothers who were feeding their children perfectly balanced diets of various grains, fruits, vegetables, lean protein sources, healthy oils, and broths, I felt a little guilty that I had failed at blenderized diet, even though medically, it just wasn’t appropriate at that point in time.

I’ve thought about those feelings of guilt and disappointment often in the last couple of years. In many online forums, there tends to be an overall air of negativity towards formula in general. A simple Google search for“breastfeeding vs. formula” will yield 5.5 million results that argue both sides of the age-old debate. After having successfully breastfed my first 3 children, it was heartbreaking for me to be told that I could no longer breastfeed the 4th baby. Not only could I not breastfeed her, but after 2 months of painstakingly watching my diet so that I could pump and freeze breastmilk for her, we realized that she would never be able to use it. At that point, formula felt like my enemy even though I knew it was the only thing keeping her alive. Acceptance of formula did not come easily to me. I had to work for it, but I eventually made peace with the cans of smelly powder and liquid that showed up on my front porch every month. That did not mean that there was anything wrong with formula, or with any of my friends or family members who chose to use formula, it just was not what I had planned on. The choice to breastfeed had been taken away from me and that was hard. That was my personal feeling, but ultimately I was incredibly grateful for the formula that was keeping my baby adequately nourished when my breastmilk could not.

Within the world of tube feeding, the trend towards blenderized diet over commercial formula seems to be taking on a similar tone to the breastfeeding vs. formula debate. I sometimes cringe when I see what people write about formula in online forums. There are claims that it is nearly always better than commercial formula, references to commercial formula as “goop” and “chemically processed science in a can,” and touting the virtues of lovingly preparing a blenderized diet rather than use “synthetic formula with a long list of ingredients that you can’t even pronounce”. Here’s the problem with that undertone. There is no inherent virtue in any particular method of feeding a child. The virtue is in doing what is best for that child, no matter what that may be.

Truth be told, there is a large population of individuals who have only mechanical reasons for being fed with a tube. Many people lose the ability to eat due to cancer or stroke. Some simply cannot consume enough calories in a day to maintain a healthy rate of growth, and still others are unable to swallow safely. In the absence of medical conditions that preclude regular foods as an option, a blenderized diet of healthy foods is obviously much more natural to the digestive tract than a diet consisting strictly of commercial formula. However, for a large population of individuals with feeding tubes, there ARE medical conditions in which using a blenderized diet could be largely detrimental to their health. In our case, a wide variety of known food allergies and protein intolerances coupled with dysmotility make it incredibly difficult to find adequate sources of all of the nutrients that are provided by commercial formula in a caloric density that is well tolerated. I WISH that this was not the case, just like I WISH that I could have kept breastfeeding, and just like I WISH we had never needed the tube to begin with.

Not every woman who feeds her baby formula is compelled to do so for medical reasons, and not everyone has a medical reason for not doing blenderized diet. To be honest, even if the medical reasons had not been there, I’m not sure that a 100% blenderized diet is something that would be feasible for me at this point in time. There is nothing wrong with that, and there is nothing wrong with me as a parent for choosing formula over blenderized diet. It doesn’t mean that I’m lazy, or somehow not as loving as the mother who chooses blenderized diet, it just means that my life is different than hers.

Just as there is no inherent virtue in a woman’s decision (or lack of choice) to breastfeed or use formula, there is no inherent virtue in choosing to use a blenderized diet versus choosing (or lack of ability to choose) to use a commercial formula. Those of us whose children are unable to subsist on “real food” are eternally grateful for the technological advances that have led to the development of these highly-specialized formulas that keep our children alive and thriving, and I would venture to say that those who ARE able to do blenderized diet are eternally grateful for the ability to select food of their choosing and prepare blenderized meals for their children. The bottom line is this: there is no one way to use a feeding tube. Each individual does what he or she feels is best for his or her child and family, and no one needs or deserves to be made to feel like that choice is wrong or “lesser than” someone else’s choice for their family.

Brandis Goodman is mom to 3 year old tubie Raya her 3 older siblings. She currently serves as the Chief Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers as a Tubie Friends Surgeon. In all of her spare time, she has returned to school to pursue another degree.

Roger Ebert and Awareness (By Traci, Founder)

by Feeding Tube Awareness Foundation on 04/05/13

I remember when I found out Roger Ebert had a feeding tube. It was the day he re-released this article http://blogs.suntimes.com/ebert/2011/05/the_way_to_a_mans_heart_is_thr.html in the Chicago Sun-Times and on his facebook page.

I couldn’t believe that someone so well-known was talking about tube feeding and that it was reaching so many people. What struck me about this article was that he spoke so plainly about it. He described the experience from the physical to the emotional. He also understood the need for awareness. I am not sure if he understood the impact it would have on those of us who shared this world with him. It was so comforting to see the show of support for him and thus, the rest of us.

“Now why am I writing about this in the first place? Because so many people don't understand it. Every day my radar picks up subtle signs of people who wonder what the deal is. How do I eat and drink? What's going on? Do I actually have a tube going into my stomach? Yes, and they do too. It's in their throats. 
I feel that the less mystery we make about life and illness, the better. When people know what's going on with me, they're not nearly as freaked out as you might imagine.”

Doesn't that just sum it up?

I posted on Roger Ebert’s facebook page the next day, and to my surprise he acknowledged it.
https://www.facebook.com/RogerEbert/posts/218818604795880 While I was horrified that I misspelled awareness, I was elated that he became aware of our efforts. I had crazy thoughts of asking him to be on our Board of Directors. In my mind, the possibilities were endless.

I can’t remember any of this without also remembering the late Aadhaar (Eric) O’Gorman, the author of Complete Tube Feeding, and one of the original founders of the Blenderized Diet Resource Group. He was the one who shared the article on facebook and thus, informed me of Roger Ebert’s feeding tube. He also may have greatly influenced Roger Ebert to start using a blended diet. Scroll through the comments on the article. Roger Ebert bookmarked Aadhaar’s blog. Aadhaar was a great lover of sharing knowledge, teaching people what he had learned and de-mystifying all that is tube feeding. He, like Roger Ebert, had lost the ability to speak and used social media to maintain a voice.

Roger Ebert wasn’t a big player in the development of the tube feeding movements, but his presence and his acknowledgement of our efforts, made a real difference in knowing we were gaining momentum. Moreover, it energized us. If I could have bottled the enthusiasm of the FTA staff when Roger Ebert tweeted about Feeding Tube Awareness Week (without any prompting from us), we would have the energy to run the organization for years.

Roger Ebert was a great man, who changed movie critiques and put “two thumbs up” into our vernacular. He was a great writer who connected with his reader. But, he also inspired a great many of us with his candor and willingness to discuss what so many would rather hide.

I regret not sending him a “Super Tubie” t-shirt, because he deserved the title.

 

Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie who has the newly named, Koolen de Vries Syndrome.

Outreach and Spreading the Word! (By Traci Nagy, Founder)

by Feeding Tube Awareness Foundation on 02/14/13

One of the ways that I spread the word this year was by attending Clinical Nutrition Week, a conference held by the American Society of Parenteral and Enteral Nutrition (A.S.P.E.N), where I was given the Lyn Howard Nutrition Support Consumer Advocacy Award. A.S.P.E.N is an interdisciplinary organization made up of physicians, dietitians, pharmacists, scientists, and educators – basically any professional who works in nutrition support with IV or tube-feeding. They promote research and have medical journals. They work with hospitals and government agencies. They are the real deal.

Frankly, I am not sure if I would have made the trip to Phoenix and left my son alone with my husband for 5 nights and 4 days if I wasn’t getting an award. But faced with the opportunity to speak in front of a clinical audience that we haven’t had much contact with, I had to go. Thankfully, FTA staff member Brandis lives nearby and was able to attend. Now that I have gone, I will go every year. It was just that good.

A lot of the clinicians we met hadn’t heard of us or Feeding Tube Awareness Week. But in conversation after conversation we heard, “it is great to hear this from a parent perspective” or “I am so glad you are doing this, it is so important.” They really cared. They were thankful to be reminded of the consumer and get insight into what parents go through when they begin tube-feeding. It was refreshing. They took our buttons and brochures. They listened to us talk about our experiences. A doctor from Colombia (the country, not the hospital) stopped us and asked for brochures because there is nothing like this in his country. We assured him that we would find someone to translate if need be. He seemed so relieved. We did meet a few people who knew of us through other parents. That was amazing to hear! It all leads to a better understanding of us, as parents, and our children who are tube fed.

One of the more exciting outcomes was meeting people from the companies whose products and services we use (Kimberly-Clark, AMT, Moog, Covidien, Abbott, Nestle, Byram HealthCare, Walgreens, ThriveRx) and being able to give them feedback. They listened and heard us. Please, if they have a Facebook page, like it and participate. Take note of who makes what you use, the services they provide and what they do to support the community. They want to hear from us to make their products and services better.

One particular meeting is worth mentioning. We spoke to a group from Moog. To date, they have been elusive; there is no Moog Facebook page and they are hard to contact. They convened an on-the-spot session with us. We pulled over chairs and sat around in a big circle for 45 minutes. We had pumps, bags, and backpacks and we went through everything. Alarms, holes in bags, air in bags, the current screw-on caps, how it would be easier if the Velcro didn’t have to wrap around the bag in the backpack. If we heard it over and over on the page from you, we mentioned it. Their Senior Product Manager took notes, which he reviewed with me before we left. They were so appreciative, and it was amazing. They didn’t know we existed. Now they do, and I hope we are able to continue to provide feedback.

Spreading the word matters. It matters because it gives us a larger collective voice – with clinicians, with companies, the media, and with the general public.

If we had 500 people on our Facebook page, we most certainly would not have gotten the same response, but we were able to say we would be at 10,000 by the end of Awareness Week! We can make a difference in our own experience by doing it together.

Awareness doesn’t stop when Feeding Tube Awareness Week is over. Here are some templates to help you spread the word:

http://www.feedingtubeawareness.org/provider_letter.pdf

http://www.feedingtubeawareness.org/FTAWSchoolPresentation.html

Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie who has the newly named, Koolen de Vries Syndrome.

I Love My Tubie! (By Hillary Savoie, Chief Communications Maman)

by Feeding Tube Awareness Foundation on 02/13/13

(This is an abridged post. See the full version at thecutesyndrome.blogspot.com)

It seems like such an appropriate thing to be writing about my daughter Esmé’s tubie for Valentine’s Day. You see, I love my girl’s tubie.

It saved her life.

But, I am not going to lie, I had a terrible time coming to terms with it.

Had I known more about tubies, had I known that there was a proud and invested community waiting to embrace us, or what freedom and safety a tube could provide my child, or the stress and fear that the tube would alleviate...I would have been less resistant.

We have made such progress and learned so much...the progress has been Esmé's and our own, as her caregivers:

It’s Easy! You see this was a surprise to me, but dealing with her feeding tube was super easy. It was just a matter of learning how to be a confident tubie caregiver. Once I learned that I knew what was best for Esmé and her tubie, it became the simplest thing in the world to deal with.

HELP!? I found my way onto the Feeding Tube Awareness facebook page by some bizarre accident. No one told me about FTA in the hospital. I just came across it searching for anything relating to feeding tubes. And I was all “OH MY GOD, there are more of us out there!” The feeding tube community is so amazingly knowledgable, thoughtful, and informative. The extent to which people will go to advise and aid their fellow tubies never ceases to inspire me. I am so proud to be a member of this tribe.

A sigh of relief. Of course, the most phenomenal part of Esmé’s tubie is the progress she has made. She is stronger and healthier. And, her airway is safer. The tube helped protect her both by reducing the risk for aspiration and by helping to keep her well-nourished and strong enough to fight off sickness.

How do other parents do this? But the most surprising part to me is how much the tube has become a part of our lives. I honestly forget that all children don’t come with these conveniences...other parents complain about their children refusing food, spitting out medications, and getting dehydrated, and I find myself thinking: “Just use the tubie, geez!” and then: “Oh right! How do they do it? Poor people, no tubie!”

It is funny, but the confusion shows the simple truth that Esmé’s tubie has become a part of our lives, a part of keeping her safe, a part of her. It’s not going away any time soon.  

Which is good, because I love Esmé’s tubie

 

Hillary Savoie, Maman to 2 year old Esmé, is the Chief Communications Mama of the Feeding Tube Awareness Foundation. She also writes a blog about her journey with Esmé: thecutesyndrome.blogspot.com

We can all use a little help: Friends and Family (by Brandis Goodman, Chief Multimedia Momma)

by Feeding Tube Awareness Foundation on 02/12/13

Being told that your child needs a feeding tube is hard. Having to make decisions about whether or not to tube feed is hard. Managing the care of a medically complex child at home is hard. But one of the hardest aspects of having a tube fed child is being judged and criticized during a time when you are already feeling vulnerable, helpless, and perhaps even questioning your own judgment.

People are curious, and some of them were born without filters. Strangers sometimes say stupid things without thinking. We learn to deal with that, as all parents have to at some point. Even more difficult than thoughtless comments from strangers though, are thoughtless comments from friends and family, whether or not they are intended to be that way. Here are some things that you need to know if you have a friend or family member with a feeding tube:

1. We are struggling to accept the tube ourselves. As such, we appreciate support in reaching a point of acceptance rather than reinforcement of the negative feelings towards the tube that we are trying hard to move past. Understand that the tube is not the enemy, and it is not the worst thing that could happen to your loved one. If you have a loved one who has a feeding tube, learn to love their tube because without it, you may not have your loved one in your life anymore.

2. Learn to be comfortable with the feeding tube, even if you’re not. Don’t be afraid to hold or play with the child. Caring for a child with medical complexities is stressful, and parents need a break every now and then, but finding babysitters is difficult. Be willing to learn about the child’s medical conditions, how to care for the tube, how to administer feedings, and what to do in emergencies. If you’re not comfortable doing it alone, find another friend or family member to help you. A couple of hours out of the house alone together can do wonders for the parents, even if they spend it at the grocery store.

3. Please, please, please do not criticize the decisions we make in our children’s medical care. We are not doctors, and we are doing the best we can with the information we have. If you do not understand why we have decided to go ahead with a surgery, medication, or treatment option, use your very best manners and ask, but do it in the spirit of coming to understand the decision and not to argue with it. Criticism only makes us feel worse about an already difficult situation.

4. Respect our wishes when it comes to the care of our children, no matter how silly the request may sound to you. For the safety of the child, listen to what we tell you and don’t stray from it no matter what you think the outcome may be.

5. Be patient with us. Our lives are in upheaval, and once we make it past the upheaval stage, we have a lot of upkeep to do. Most of us don’t get nearly enough sleep and are entirely overscheduled, so forgive us if we forget things or have to miss out on things. We don’t have time for some of the things we used to have time for and getting out of the house can be difficult, but it doesn’t mean that we value relationships any less.

6. There’s no need to feel sorry for us or tell us that you don’t know how we do it. We are not doing anything that any other parent in our shoes wouldn’t do for their children, and we’re not doing it because we wanted to. We are just doing what it takes to care for our children.

7. Bring over a box of tissues and some chocolate and volunteer to mop up the latest puddle of vomit while we cry into a cup of hot cocoa and tell you all about it. Seriously. Some of us have had our social interactions reduced to people under the age of 5 and medical professionals. We need something in between. We don’t need you to fix anything for us, we just need someone to vent to who will still love us even though all we have to talk about is vomit and medical supplies.

The bottom line is that tube feeding is a learning process for everyone involved. It is difficult, and the support of family and friends is critical.

Brandis Goodman is mom to 3 year old tubie Raya her 3 older siblings. She currently serves as the Chief Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers as a Tubie Friends Surgeon. In all of her spare time, she has returned to school to pursue another degree.

Been there, done that (by Stephanie McDowell, Chief Resource Mama)

by Feeding Tube Awareness Foundation on 02/11/13

 Maybe it was in the NICU, or the PICU, or the ICU. Maybe it was in the GI's office, or the pulmonologist's office, or the surgeon's office when you heard the words "feeding tube" for the first time. Maybe it was an NG, or g-tube, or GJ, or NJ. Maybe it was first described as temporary, a few weeks, maybe a month or two. Probably it wasn't temporary like they promised and probably you felt like a boulder had been tossed at you, with no warning and no time to prepare.

While I never blinked at the TPN or NG tube my son had in the NICU; it was the casual, off-hand mention of needing a feeding tube before he could be discharged that blind-sided me. The neonatologist tossed it off as I was standing in the sink area, washing up to re-enter the NICU. I felt as if someone had spun me around and punched me, all at once. A feeding tube? How could that be? Feeding tubes were for people dying and in prolonged comatose states. What weren't they telling me about my son, was his long-term survival suddenly in question? And why were they being so casual about it??

That was three years and many lifetimes ago. We left the NICU with a long PEG and a date to change it to a button six months out, "if it was even still needed by then." My training, in its entirety, consisted of being shown how to draw up a syringe, along with warnings about picking him and flipping him over when he vomited so he didn't "aspirate and die." I spent the first two weeks after being discharged from the NICU watching Teddy all night, snatching up him up every time he refluxed, flipping him over and pounding on his back. I was a basket case.

Three years later, Teddy still has his tube, and now a diagnosis of eosinophilic esophagitis. There is a steep learning curve in tubie world, I'm not going to lie. Managing the condition that required a tube in the first place, the logistical issues of a tube, the results that come from tube feeding before you've found your groove (hello, projectile vomit!). Feeding tube help back in the olden days - 2010 - existed mainly on BabyCenter's tubie board, and I relied on those mommas for everything.

That NICU doctor was so casual because she had long ago conquered the learning curve of tube feeding and had forgotten how hard it is to be standing on the other side of the mountain. I hope this makes your learning curve even just a little bit less steep.

* Research, research, research. I am admittedly biased, but the best place to start your tubie journey is by sitting down and reading our website and then getting on Facebook and connecting with our Facebook page. Your doctors might grumble and you will be asked if you are a medical professional (sometimes in a nice way...sometimes, not), but you know your tubie best. You need to be an informed advocate.

* Watch the video tutorials we have linked. A lot of tube feeding is easier to figure out by watching and then doing.
http://www.feedingtubeawareness.org/video-tutorials.html

* Tube feeding does not indicate failure, on anyone's part. Making the decision to tube feed is a brave and courageous one, and you are commended for recognizing when a little help is needed and doing it. Being ashamed or embarrassed of the tube at first is not unusual, but embracing the "new normal" makes it so much easier on everyone. It's not an easy journey but there are more of us out there than you could ever imagine.

*You will screw it up. And it will be ok. You will catch the tube on something, you will feed too fast or too much, you will Google "remove formula stain from mattress and car seat and carpet and couch and clothes and walls", you will cry. And it will still be ok. It might require a trip to your tubie doctor or buying a new sofa, but you will get through it. And eventually you will laugh -- and sometimes still cry.

Stephanie is a master at finding useful resources and is a wealth of creative ideas. She is also momma to Teddy, who epitomizes the active continuous tube feeder.

It takes a village (by Laura Wagner, Chief Operations Mama)

by Feeding Tube Awareness Foundation on 02/10/13

When you enter into the world of tube feeding, it can be so isolating, especially since it's likely your immediate friends and family know nothing about tubes. That's when it's especially important to know you are not alone. There are others out there who have done this, who are doing this, and who have the same questions, struggles, joys, and triumphs.. Quite a lot of them, actually.

When my daughter was in the NICU, and her Doctors concluded she needed a "g-button," I googled my fingers off trying to figure out what that was, what it looked like, and how that would help us feed her. I had a terrible time finding any useful information. It was no big thing to her Docs and nurses, but it's not like they would be going home with us to take care of her. I remember wondering after discharge who we were supposed to go to with questions. It's not like her Pediatrician knew anything about all this.

I tried turning to the message board I'd been a part of during my pregnancy, but I felt like I no longer fit in. Thankfully, another Mama pointed me to private message board, one that was full of other Tubie Mamas! It was life-changing! I'd found others who had been there/done that, who could answer my questions and ease my fears. They had kids that were like my daughter, and they totally understood what I was going through. Over three years later, those Mamas are still some of my best friends. They are who I go to for help, support, and understanding, even though I have not even met most of them in person.

One of my personal goals for Feeding Tube Awareness Week is just getting the word out. The resources on our web site need to be easy for anyone to find. I want those new to the world of tube feeding to know where to find a community full of people just like them, so they don't feel scared or alone. I want veterans to tube feeding, including tubie-graduates, to know their experience and knowledge is invaluable.

Tube feeding really does take a village, even if that village exists online. Help to raise awareness this week, awareness of this village. You may be the life-line to someone who really needs support!

 

Laura Wagner, mama to 3 year old Harmony, is the Chief Operations Mama of the Feeding Tube Awareness Foundation. She also works full time for a strategic consulting organization.

Taking the Stress out of Feeding Therapy (by Brandis, Chief Multi-Media Momma)

by Feeding Tube Awareness Foundation on 01/09/13

Turning a tube fed child into an oral eater is difficult. There are just no two ways about it. Once a child has spent the majority of his or her life being fed through a tube, it is very difficult to convince him or her that eating is, in fact, necessary in order to sustain life. It can be incredibly stressful, especially when you are feeling pressure to “get off the tube,” whether the pressure is coming from others or from yourself. Learning to eat is an instinctual process that usually requires little effort for infants. However, when there is a disruption that prevents a child from experiencing oral eating during the critical phases of oral development, the window of opportunity for effortless instinctual learning is missed. Many tube fed children fall into this category, whether they were intubated shortly following birth, required tube feeds to prevent aspiration, or developed severe oral aversions because of GERD or vomiting. Whatever the reason, the process of learning to eat is exponentially more difficult for a child who did not have the opportunity to follow the natural progression of oral development.

 

Feeding therapy can be immensely helpful to parents who are struggling with knowing how to help their child eat. Until I had a child who literally did not know how to eat, I had never thought about how to even go about teaching a child to eat. We have now had 3 feeding therapists over the course of less than 3 years, and although we have learned great things from each of them, there is one statement spoken by our first feeding therapist that has remained my mantra when it comes to feeding my daughter. On one of our first visits with this therapist, she told me that at that point, we needed to be realistic about the fact that my daughter was not ready to actually eat anything. She was still spitting up and vomiting several times a day and clearly lacked the oral motor skills to effectively swallow her food. Then she said to me, “Right now, our focus needs to be on helping her to have positive interactions with food.”

 

Positive interactions with food. When she said that, it was like a switch flipped in my mind. It made so much sense. Of COURSE we want her to develop a positive relationship with food! How in the world could I expect her to WANT to eat food or put anything in her mouth when the majority of her oral experiences at that point in time were vomit? I would never expect my other children to want to eat when they had a stomach bug that made them vomit, and I realized that I shouldn’t expect that from her either. From that point on, we moved forward with the assumption that until we figured out and resolved whatever was causing her to vomit multiple times a day and got her reflux under control, she was not going to want to eat, and that was okay. Instead of stressing myself out over trying to get her to let me put food in her mouth, we played with it. Whether it involved putting cooked rotini noodles between her toes or finger painting in the bathtub with baby food, the focus was on helping her to realize that food COULD be positive.

 

Due to certain conditions, there are some children who will need feeding tubes throughout life. However, the vast majority of children who spend their early months and years with feeding tubes WILL reach a point where they no longer need them. Children need and deserve to have a positive relationship with food, even if they only have a handful of foods that are safe for them to eat. Pushing them too hard too fast does not foster that positive relationship. As my daughter has come to be more interested in food, the battle has shifted from wanting nothing more than to see her take a bite of SOMETHING, to wanting to see her accept a wider variety of foods and eat larger quantities. There is still a great deal of frustration involved in trying to move forward, but setting the priority on making eating a positive experience rather than focusing on the number of calories she’s taking in has reduced my stress level and allowed her to blossom in her own right. We celebrate the victories, big and small, and when we have a frustrating day, we take a deep breath and try again the next day.

 

"A crust eaten in peace is better than a banquet partaken in anxiety." ~Aesop

 

Brandis Goodman is mom to 3 year old tubie Raya her 3 older siblings. She currently serves as the Chief Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers as a Tubie Friends Surgeon.

 

The Joys of Cold and Flu Season (By Traci, Founder)

by Feeding Tube Awareness Foundation on 12/06/12

The first sign of illness at my house is often feed intolerance. As soon as my son starts not tolerating feeds (meaning coughing, retching, vomit, becomes more irritable), I just wait for the fever or other signs of obvious illness to occur.

When you are sick, food moves through your system more slowly. Think of when you are sick yourself and don’t feel like eating much at all. It is the same for our kids. The focus needs to be on hydration, not calories. This can be a painful thing when your child is failure to thrive. But, keeping calories the same is likely to result in additional vomiting and loss of both nutrition and hydration.

The first thing I do is dilute feeds so that they are about 50% formula and 50% either water and/or Pedialyte (depending on how much vomit and diarrhea is going on). Very often you need to slow feeds down. Whether you are continuous or bolus feeding, you likely will need to run feeds for longer than you usually do. I also try to get in a bit more “free water” if there is fever. This is often in the form of water flushes throughout the day.

If you are using a blenderized diet, consider the foods you include. Stick to the basics of what you would eat while you are sick. Avoid harder to digest foods like dairy and oils.

This can involve some trial and error. If your child still isn’t tolerating, you may opt to go to 100% Pedialyte and/or water and slow feeds down further.

If you are J feeding, you may not have to make as many modifications. I found when I was J feeding, my first sign of illness was more G output and some additional retching. However, tolerance was a lot better and I didn’t have to lower calories or feed rates as much as I do when we are G feeding.

It can take a week or so for full motility (how food moves through the GI tract) to return to normal – longer depending on the severity of the illness. Increase calories and rates as they are tolerated.

When to Call Your Doc

·   If you are new to this and this is the first illness your child had since tube feeding

·   If your child has blood sugar issues then you need to have a protocol in place for when they are sick and not tolerating feeds. Some kids need more sugars than is in Pedialyte and may require D10.

·   If your child has a health condition where they are unable to have Pedialyte

·   If you child is getting dehydrated. Watch for these signs of dehydration  - http://www.mayoclinic.com/health/dehydration/ds00561/dsection=symptoms

·   Obviously, if your child needs to be seen because of the illness itself. This may be a visit to the regular pediatrician, rather than the GI.

 

Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie who has the newly named, Koolen de Vries Syndrome.

The “What Happens if I Get Hit by a Bus” Moment (By Traci, Founder)

by Feeding Tube Awareness Foundation on 10/18/12

I feel like a lot of tubie parents have had the “what if I get hit by a bus” moment, but not too many people are taking about it. I remember so clearly when it hit me. My son was about a year and a half old and had a GJ.  I was in the car for a longer drive with my husband without my son for the very first time for a day trip. (We live in a city, so we don’t drive much and frankly, we don’t get out all that much either.)  About 15 minutes in, I said something about not getting into an accident.  He said he just started thinking the same thing. We had both realized that we were the only two people who really knew how to take care of our son. Sure, the babysitter knew the basics, but that was it.

Now, that was nearly three years ago and not much has changed except we rarely have a babysitter with my son in school. But, recently I am more focused on it. Let’s call it my mid-life crisis. Since entering my forties I am a lot more aware of things like needing insurance, a will, a special needs trust (though very daunting and expensive) and who would take care of my son if I were to get hit by a bus.  I am envisioning a will that actually has directives like “go to the Feeding Tube Awareness website” and ask the tubie mommas if you have questions. 

Like so many mommas, I handle all the doctors, therapists, school, case manager, pharmacy, supplies… the everything it takes to keep my son going. I started taking my mother or husband to doctor’s appointments so someone else besides me would know the doctor. I have my husband do things like set up the pump, formula and meds so that I know he can. I have tried to teach my mother how to vent and she fixes the pump when it beeps. It all falls short of complete knowledge sharing. What I need to is actually make a comprehensive list of all that information, because it is all in my head. No one else knows I have the endocrinologist’s phone number in a pile of post-it notes and business cards on a clip on the fridge because we only see her only once a year.  I have put this “comprehensive list” on my lengthy “to-do” list.


My comprehensive list is going to include the following:

·         Doctors: Contact info, which hospital they are at, how often we see them, last visit

·         Medications: Dosage, times administered

·         Pharmacies: Contact info and what we get where

·         Medical Supply Company: Contact info – what supplies we get monthly and which we get less often

·         Feeding Schedule: Formula prep, pump rates and schedule (including any other instructions about using prune juice, probiotics, etc. – and what brands I use)

·         Therapists: Contact info, schedule (agencies and how billing is covered, if needed)

·         School : Contact info for Teacher,  class social worker, bus company (with bus number)

·         Case Manager: Contact info, how often we see her and what she handles for our waiver program

·         Insurance Info/protocols:  Contact info and who you need to call

·         Tubie mommas “on call” – where to find mommas who I know will know how to answer questions – and a link to http://www.feedingtubeawareness.org/what-you-need-to-know.html  for video tutorials (how to change a g tube, etc)  and other frequently asked questions.

 

Laura, our Chief Operations Momma, has all this info organized in an Excel spreadsheet. We mommas love our spreadsheets! I love that idea, but know I am going to need to print it out and keep it in a fire safe box, too.  Some of my loved ones aren’t computer people.  

There are other resources for medical binders :  

Jonah & The Whale Foundation has an online version to help you get started - http://www.jtwf.org/ResourcesBinder.html

Mommies of Miracles has downloadable Care Pages by subject for your binder - http://mommiesofmiracles.com/resources/care-pages/

 

The resolution for me right now is not to get hit by the bus. Take precautions.  And, hopefully I will get my comprehensive list together, teach others what they need to know and sleep better knowing that.

 

Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie who has the newly named, Koolen Syndrome.

 

 

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