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What They Don’t Tell You About Feeding Tubes

What They Don't Tell You About Feeding Tubes - Columbia SC Moms Blog

February 7-13, 2016 is Feeding Tube Awareness Week. There are many reasons a person may be on a feeding tube and for anyone involved with them, there is a lot that has to be learned. Some of it you can find advice on and other things you discover all on your own.

A feeding tube is what gave me my son back. His little body was in a constant fight against all foods and by the time he was 7 years old his health was going downhill fast. Shortly after turning 8, he had surgery for his g-tube to be placed and has been fed primarily via a feeding tube ever since. Through his feeding tube he can better tolerate the special formula he needs in order to get his nutrition. Being allergic to all but about 10 foods makes this tube a necessity for us. And honestly the tube is a life saver.

But there are some things that no one tells you about having a child with a feeding tube. Things you have to learn on your own. So during this week of feeding tube awareness, I reach out to you in an effort to bring awareness to the things that are often left unspoken.

When your child gets placed on a feeding tube, the team of doctors who place the tube and deal with the reasons for needing the tube are all experts in their field. They know what is needed for the care, nutrition, and well being of your child.

But then there are your child’s other doctors. The regular doctors. The ones who are experts in their own fields, but due to the rarity of dealing with medically fragile children, they do not have expertise on the needs your child may have.

Fortunately we have a great pediatrician who does all she can to meet my son’s regular needs. But there is another doctor that is seen regularly: the dentist.

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Just because a dentist is a doctor doesn’t mean they know about the needs of my son’s condition or what life is like for him on a daily basis.

This is where I really started to learn about the things they don’t talk about. My son ended up changing to a new dentist in the midst of all we had going on (that’s a long story for another time). This new dentist made us jump through multiple hoops before they would even look in my son’s mouth all because he had a port for a feeding tube placed in his stomach. To this day I seriously wonder if they would even know about it had I not been totally honest with them up front about medical conditions.

The next problem comes during cleanings. Since most pediatric dentists have multiple cleaning chairs in one location it is easy to overhear every conversation. As I sit and listen, I mentally prepare myself for what will come when it is my turn to hear about my son’s teeth. The “he really should drink water and not tea or juice” speech. My son is allowed to drink sweet tea, pure blueberry juice, and pure cherry juice. That’s it other than water. When it’s my turn, I politely listen and usually just go about my life, but during this past cleaning. I couldn’t keep quiet. When the hygienist started her lecture, I simply looked at her and said I couldn’t take away tea once a day or juice once every few days because for him those items are a couple of the only things he ever gets to taste by mouth. She was stunned into silence.

These are the things that no one tells you about. The regular things that you don’t even think to ask about until you’ve lived through an experience such as this.

So this year, I want to bring awareness to the other healthcare providers who care for children with feeding tubes. While there are many things children with feeding tubes can do that are just like any of the rest of us, there are some things that are going to be different and healthcare providers need to start learning a little bit about these complexities.

To the parent out there who is faced with their child going on a feeding tube, be aware that there are obstacles such as these that are out there. It is our job to help bring awareness so that our children will get the treatment they need and deserve just like any other child.

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5 Responses to What They Don’t Tell You About Feeding Tubes

  1. Christina February 12, 2016 at 9:11 am #

    I think we lucked out with our dentist. Before we went to full feeds for our formula I asked about the supplement she was on and the damage it was going to cause to her teeth (along with her CP making it harder to get a good daily clean of them) I was waiting for the what not to feed her “talk” my dentist said “My most important goal as her dentist is to make sure along with her other specialists is a good quality of life, and if that means I(as in dentist) has more work to do because she is eating things that will damage her teeth that’s fine, her quality of life is the most important, keeping her alive is most important” I think we lucked out with our dentist!

    • Brandi Cade
      Brandi Cade February 12, 2016 at 9:17 pm #

      That is wonderful. I had already switched my son to my dentist prior to the feeding tube. He was great working with my son, but then my son started needed a little more work that they didn’t have all the small sized equipment for. We had to switch back to a pediatric dentist. Unfortunately, it had been well over a year since my son had seen his previous pediatric dentist and since he was now on regular insurance and Medicaid, the original pediatric dentist office insisted they couldn’t add anymore Medicade patients. Forcing me to see the one we do now. I still have hope for the future, but I realized that there is so much educating that still needs to be done.

  2. Kristina February 12, 2016 at 12:32 pm #

    hi. … Nice bit there.

    Yeah I hate when others say the food lecture…. Dentist, PT, OT, teachers….. Etc.
    When we got our gtube 18 years ago we felt so alone now with the web it is so nice.
    I see you are from columbia.
    I wanted to let you know I am getting a local FB group together for all special needs families, not just moms and dads but families.
    I would like the group to meet 1 Or 2 times a years with kids too.
    It is called ‘special needs families of Lexington and Columbia, SC’

    • Brandi Cade
      Brandi Cade February 12, 2016 at 9:21 pm #

      Thank you for letting me know this Kristina. I am also going to share this information with another person I’ve met via Facebook whose son reminds me so much of my own at an early age. Her son is also on a feeding tube. I know she has been really active in trying to connect with other parents in our situation. A strong support group is so helpful in all of this. From the daily aspects to the long term to dealing with all the “red tape” that comes up at times.

  3. Lisa Smith February 13, 2016 at 6:05 pm #

    The biggest problem we have is the calcification that forms on my daughter’s teeth. “You need to work harder to clean them. Try a spin brush. Brush them more often, I get told. I do all that. I listen to her cry for 30 minutes while they scrape plaque and build up off her teeth. She takes nothing orally, aspirates even water, and barely let’s me in to even brush her teeth. I hate dental appointments. She has hypercalcemia as part of her renal failure. The bonus is the calcification keeps cavaties from forming! Got to find the bright spot.

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