Weight gain, or the lack thereof, is often the reason that children are put on feeding tubes. And though parents learn to accept a small bit of loss during the weaning process, often the question remains as to when they might see their child begin to gain again post-wean. So let’s see if we might understand what to expect by looking at how orally-eating children typically gain weight.
The do’s and don’ts of pre-weaning can be difficult to assess and navigate. In particular, many families wonder about their child’s tolerance of tube feeds and how they might adjust in order to make the experience more comfortable and conducive to oral intake. Blended diets, in particular, spark curiosity, so let’s take a look at how they might factor into your child’s pre-weaning stage.
Parents whose children have struggled similarly to mine often face significant trauma triggers, and sometimes, our response to these triggers can unnecessarily stall the progress we make in weaning our children safely from feeding tubes. The minute we hear a cough or baby cry, the second there’s a gag, cough or hiccup – panic sets in. Because to a medically complex kiddo, every scenario feels like a medical emergency, even if it isn’t.
While swallow studies are a useful piece of the puzzle surrounding whether or not your child is able to swallow food and drink safely, they rarely provide us with an absolute, comprehensive picture of what’s going on during typical mealtimes. So, let’s take a look at how swallow studies are conducted, what kind of insight they provide, and how we ought to interpret their results.
When one of your kids is tube-fed or recently weaned, it’s easy to overlook the other kids at your dinner table, or forget that safe and joyful meals are just as important for non-tubies as for tube fed kids. I learned this the hard way – that there are a few things to be aware of when your tubie is not an only child.
Weaning your child from a feeding tube can be stressful and exhausting for a number of reasons, one being that often, a weaning child can begin to wake up at night, crying for reasons that they can’t quite articulate. And while 3 am is sleepy time – especially for us parents! – there are some good ideas for helping you to get through.
Being the parent of a toddler is exceptionally fun and rewarding. It can also be exhausting. Developmentally, toddlers are learning to be independent people. Having a toddler with a feeding tube brings its own set of challenges. How do we, as loving caregivers, help the toddlers in our lives with tubes get ready to participate in a wean during this sometimes challenging developmental stage?
One of the big questions that comes up as a child becomes more and more driven to eat orally is “How do I get their skills to catch up?” While some kids will need the help of a local feeding therapist to more intensively work on the muscles for biting and chewing, there are some things that we can do to help set our kids up to be successful, as well as help progress their skills for biting and chewing naturally.
I learned how to let go of my anxiety-ridden control tactics, and my daughter found her appetite and learned to eat happily and independently. But that took time, patience, and a lot of help. And looking back, there is one thing that I would tell that tired, frustrated mom who skipped Thanksgiving dessert to cry in the bathroom.
