The Feeding Family

How many questions do we ask our children in a day? In an hour? Maybe 5, 10, 100? Often it depends on the day, activity, and our mood (and that of the child!). What do you want to eat? How was school today? Why are you crying? Which book do you want to read?

Questions are a wonderful tool to gain knowledge and understanding of our world and of the thoughts and feelings of others. The way we ask questions of our children can give us more or less information, just by choosing our words carefully. 

When we ask a question, we expect an answer. Think about the question, "What color is that carrot?" It requires a very specific answer, usually only one word. What do we learn from our child's answer? At most we are likely to find out if they know their colors. A great way to ask the same "question" is to say, "Tell me about that carrot." This question is open-ended and invites the child to think critically about many elements of that food. They may respond with their feelings about carrots, or they may describe the carrot's shape, texture, temperature, color, or smell. A simple change in our words can open up a deeper conversation about everyday experiences.

How about this situation, your child is sitting at the table with food in front of them and a sour look on their face. What do we say to them? Often we ask our child, "Do you like/want it?" or even, "You don't like it?" When we ask these questions, however innocently, we can sometimes plant seeds in their little brains that maybe there IS something not to like or try! Next time you see that look, try this instead: "I wonder what you're thinking about that food." Instead of a question, this is a statement which encourages your child to also reflect on how they feel, negative or positive. You might be surprised by what your child replies with!

Questions are an important part of teaching our children about language and about the world around them. With a few simple changes to our words, we find that our children have a lot to teach us as well!

Our Sunday Fun-Day posts feature fun, easy, food-related activities for you and your family to enjoy. These include ways to explore new food textures or flavors outside of the pressure of a "mealtime". We hope that this "food-play" will allow a new opportunity for your little ones to learn to love food.

This week's activity is Oobleck, a well-known messy-fun activity that is wonderfully easy to set up. To make Oobleck, you only need two ingredients: corn starch and water. Mix the two together in equal amounts to create a weird and fun mixture that firms up solid when manipulated, but "melts" back into a liquid when held in a warm hand or simply left on the table.

Here are a few new ideas to make Oobleck a great learning experience about smells, colors, and textures:

What's that smell?: Instead of water, mix your cornstarch with fruit or vegetable juice, vinegar, or even chocolate milk. This will add a subtle scent and color to your Oobleck. Have fun guessing what each one smells like.

Tie-Dye Oobleck: Once the water and cornstarch are mixed, drizzle food dyes over your Oobleck. See what happens when the dyes are mixed or swirled. Talk about the colors and how they change to build vocabulary.

Buried Treasure: Hide 3-4 small beans, nuts, raisins or another small hard food in the Oobleck mixture. Encourage your child to help you find the "buried treasure" within the mess. This will help build texture awareness and fine-motor skills. Don't use this activity with smaller children who might put the bean or nut in their mouth. It could be a choking hazard!

While Oobleck is completely edible and non-toxic, this is not an activity to focus on eating. This activity is meant to encourage your child to explore a new food-like item through the senses of sight, touch, smell, and even sound! All of these experiences can help your child feel more comfortable about food with these same sensory properties. Have fun!

Progress! Not a word that had been at the forefront of my therapy sessions with Sarah. But since my trip to the New Visions Clinic in Virginia, progress was our word of choice. In four weeks, Sarah went from automatic meltdown during tube feedings to an active participant. She was requesting breaks during gravity bolus feedings and allowing for gentle abdominal massage and venting of gas through her g-tube before, during, and after feeds. However, she was still showing many signs of stress and discomfort. As formula flowed into her belly, she would breathe more heavily, close her eyes, and rub her ears. Her parents and I all felt that something was still not right.

Sarah’s parents were reluctant to add another doctor or medical group to their already complicated team of professionals. They consulted with the physicians from their inpatient behavioral feeding program. The program suggested that Sarah had “dumping syndrome”, a scenario in which the body rapidly expels food or liquid through the digestive system due to a damaged GI system. Dumping syndrome is common in children who have had Nissen fundoplications, as Sarah had along with her g-tube placement. The symptoms didn’t add up though, and Sarah’s parents felt uncomfortable with such a serious diagnosis made over a phone conversation. Sarah’s pediatrician was also out of ideas and further recommended to the family to another feeding team lead by a GI doctor.

This new feeding team suggested the placement of a g/j-tube (combination gastronomy tube and jejunostomy tube), which would allow for Sarah’s formula to be dripped slowly into the jejunum, the second part of the small intestine, just past the lower sphincter of the stomach. 

No surgery would be necessary to change the g-tube to a g/j-tube, but it would need to be changed under anesthesia and with some radiation to ensure proper placement. The new team felt that Sarah’s discomfort was the result of overstimulated sensory receptors in the stomach, probably in conjunction with food intolerances or allergies. The idea was to give Sarah’s stomach, as well as her emotional system, a nice long break from food. Once Sarah’s system was given time to re-regulate itself, the team thought that therapy directed at the feeding aversions would be successful.

Sarah’s parents were initially afraid of another “medical” procedure. Especially when they had been told that the placement of the g-tube would solve many of their problems and in turn caused many more than they could have imagined. They were also concerned about what a j-tube would mean for their daughter. A j-tube meant that Sarah’s feedings would need to run for most of the day. She would have to wear the small feeding pump in a backpack during the day. Would she still be able to participate in dance class? What about playing outside with other kids at their neighborhood park? What about swimming in the lake during the summer? Fortunately, the new GI doctor walked through the entire process with both parents. Sarah would be able to participate in most activities with only a few modifications. For certain activities, the feeding could be stopped for a few hours to allow her a little more freedom. Eventually, they would try to run the feedings overnight, so that Sarah would have even more time “off the pump” during the day.

Sarah received her g/j-tube a little more than a week after her first evaluation by the new feeding team. Being fragile, it took a very long time for her body to heal after the new placement. Her family struggled with leakage around the g/j-tube site, infections, and with the new process of carrying around a feeding pump everywhere they went. After a few weeks, things had finally settled down and Sarah was back to herself, and even a little bit better than she had been before. Overall, the transition to the g/j-tube was a success. Sarah no longer retched or arched during tube feedings. She appeared comfortable almost all of the time. The one exception was during activities that were particularly stressful. Sarah still demonstrated retching and gagging in response to anxiety, even if it was unrelated to food. She even began to explore foods independently during family mealtimes. She no longer appeared “afraid” of food, even though she was not yet eating by mouth.

Lesson #6: Sometimes one finish line is the start of another journey.

Even though Sarah is now tolerating her tube feedings, gaining weight, growing, and happy; the real work is about to begin. This is the beginning of the true feeding therapy. Now that Sarah’s medical needs are met and she is comfortable, we will begin to explore ways to help her eat comfortably by mouth. 

"What do you do?"
"I'm a speech pathologist"
"A what?"
"A speech therapist"
"Oh, my sister/brother/mom/cousin had a lisp/stutter/couldn't say their 'r' sound! Do you work in a school?"
"No, I work at a children's hospital"
"Wow. Why do sick kids need speech therapy?"
"Well I work with kids who were preemies, or who have had head injuries, and they need help with communication. Actually, mostly I work with the babies"
"But babies don't talk."

This is how most cocktail party conversations go. If anyone out there is a pediatric SLP  working with children under the age of 3, you've probably had the same conversation. The simple fact is, no one really knows what an SLP does until they need one. The same is true for most other rehabilitative services as well. So, what does an SLP do exactly? And why do SLPs work on feeding and swallowing disorders? Do other therapists work on feeding and swallowing? How do you find the right person to work with your child?

Speech and Swallowing? What's the Connection?
A speech-language pathologist, or SLP, works with patients from birth through old age on communication and swallowing disorders. Communication includes the understanding and production of the sounds that make up words (speech) and the understanding and production of sentences and stories (language). Other communication disorders that an SLP would address include stuttering, social language impairments (such as with autism spectrum disorders), and voice disorders. Because communication is controlled by the brain, the mouth and throat, and the respiratory system, it makes logical sense that the SLP would also address feeding and swallowing - which uses the same structures and systems.

Does Every SLP Treat Feeding and Swallowing Disorders?
This is a great question, and one that every parent or caregiver should ask. The answer is NO. While every SLP receives some amount of training in swallowing disorders during their graduate school training, not every SLP has skills or experience in this area. The key is to find out how much and what kind of experience your child's SLP has in the areas of feeding and swallowing. How many years of experience is a place to start, but it's not the whole picture. Here are a few questions to ask your SLP to find out about their experience level:

1. What kinds of feeding and swallowing disorders have you treated before?
2. How many patients with feeding and swallowing disorders are on your caseload right now?
3. Do you have any certifications or continuing education in specific treatment approaches? (some of these might be S.O.S., NDT, Mealtime Partners, or VitalStim)

As always, if your SLP tells you about anything you don't understand ASK QUESTIONS. The more you understand, the better advocate you can be for your child.

Do People Other Than SLPs Treat Feeding and Swallowing Disorders?
Yes, there are other types of therapists who treat many aspects of feeding and swallowing disorders. However, an SLP is the only discipline to specifically address feeding and swallowing disorders in their required graduate education and in their standards of clinical practice. Occupational therapists, lactation consultants, and even some nurses and dietitians treat feeding and swallowing disorders from different perspectives. While these specialties bring unique information to a feeding and swallowing treatment plan, it is again best to ask the question about experience. 

A good friend and colleague of mine is an occupational therapist who is also pursuing her lactation consultant certification. In addition, she has a degree in early childhood development and 5+years of experience in a NICU (Neonatal Intensive Care Unit) setting. Do I think that she is qualified to treat feeding and swallowing disorders? Absolutely. In a perfect world, the many specialists who address feeding and swallowing would work in collaboration and share their specialized knowledge.

The Team Approach - Building a Feeding Family
Sometimes it can feel that finding the one perfect person to provide therapy for your child is a daunting task. How could one person possibly have all the answers!? The answer is that they don't. The best approach is to find an SLP with a good amount of experience who is willing to work as a part of a team of specialists. This team could include any or all of the following:

• Pediatrician
• Dietitian or Nutritionist
• Occupational Therapist
• Developmental or Early Childhood Specialist
• Lactation Consultant
• Social Worker or Family Counselor
• Nurse

Don't forget that the most important person on this team is YOU, the parent or caregiver. YOU are the one person on the team who knows your child the best. YOU are the person who will be coordinating follow-through of the team's recommendations at home. Make sure that you build a feeding team who values your input and listens to your suggestions and concerns.