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Feeding Therapy: Learning From Our Mistakes

Feeding your child can be one of the biggest, most painful struggles you’ll face after leaving the NICU. I know it has been for us. When your child doesn’t eat enough, or won’t eat at all, it can consume you. It became an emotional journey for me. Feeding my son was supposed to be a beautiful time of bonding. Instead, feelings of failure, guilt, and frustration filled meal times. What kind of mom can’t feed her own child? Friends and family, even complete strangers, were quick with advice. All children eat. “What am I doing wrong?” was the constant question in my head.

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James had truly outstanding therapists who worked with him and prepared him for bottle feeding.

James’ feeding journey actually started out pretty well. He had some excellent therapists in the NICU who worked with him from very early on, preparing him for his first oral feeds. He was almost five months old when he was given a bottle for the first time. He did so much better than anyone expected. He seemed to enjoy it, and with a few strategies in place at each feeding, was successful. James went home from the NICU taking all of his feeds orally.

He continued to do well for quite some time. It wasn’t easy, he struggled with solids, and his weight was monitored very closely, but James took enough in to maintain his own growth curve. His biggest challenges came following a serious illness when he was two and a half years old. James became dependent on an ng tube, taking nothing by mouth. In the months that followed his illness James received feeding therapy with no success, and ended up needing a g-tube placed when he was three.

Since his g-tube placement, James has received some very effective feeding therapy. Now, at three and half, he takes all of his feeds orally again. We use his tube for medicine and water, and have it as a back up in case of illness, but he’s eating again. It’s very structured, and he only eats pureed foods, but he eating, he’s growing, and he’s gaining weight. That is success for us.

If you’re just beginning this journey it can be difficult to know where to even start. Choosing to begin feeding therapy is a big decision in itself. When you discover all of the options that exist, it can become overwhelming. We made some mistakes along the way that likely made this journey more difficult than it had to be. We’ve learned from them, and are definitely better prepared now when seeking therapy for our son. Maybe our mistakes will help you avoid some of the situations we found ourselves in.

Things to Keep In Mind When Considering Feeding Therapy

  • A phone call to your insurance company to see what they cover is always a good place to start. It’s never quick, but it will be time well spent. Do they cover home based therapy? Center based therapy? Small group therapy? In-patient feeding programs? Are there a limited number of sessions covered each year? Who needs to make the referral and what documentation is needed? This is an important first step in finding out what’s available for your specific situation, and you may be surprised by what you find out. When we decided to pursue intensive therapy for James, we were surprised to discover that his insurance actually covered in-patient programs easier than out-patient programs.

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    Feeding is very structured now, but he eats. When feeding therapy works the results can be astounding.

  • Many options exist for the type of feeding therapy your child will receive, but you have to do some research to find them. Programs have different philosophies and different models of therapy, and vary greatly in the number of sessions offered each week. Know what options are available, and pick a program that will best meet you and your child’s needs. It’s easy to do what we did, and just accept what’s offered by local programs, even when it isn’t enough. Frequency of services is important. Every other week, once a week, and even twice sometimes doesn’t help. Voice your concern early on and often. We wasted several months with very ineffective feeding therapy this way.
  • Ask questions and observe to be sure you and your therapist are on the same page, working toward the same goals. This is one of the most important steps you can take to be sure your child is getting the therapy they need. Even though we wrote other goals, one of the therapist who worked with James was only concerned with weight gain. James ate only yogurt, so the therapist’s plan was to increase the amount of yogurt he could tolerate. We wanted James to gain weight too, but there were many factors to consider with his feeding therapy, not just weight gain. Again, we wasted time. What we needed was a therapist with a plan to address the whole situation.

Through our mistakes, we finally figured out what James needed. We figured out what we were willing and able to do, and then found the best option for our situation. We ended up out-of-state, at an in-patient program for two months, but it worked. With some research, I hope you’ll find what you need too. Our preemie journeys are filled with many bumps along the way. Hopefully our mistakes will help you avoid a few of your own.

Alison Epps About Alison Epps

Alison (TX) has one child, James. He was delivered by emergency c-section at 22 weeks 6 days gestation, he weighed 15oz. and was 10 ½ inches long. He endured a 160-day NICU stay with 4 surgeries and multiple complications. He is now an active 5 year old who recently started Kindergarten! You may connect with her on her personal blog, Facebook or email, 22w6d@gmail.com. She hopes to encourage change in hospital policy so babies born at less than 23 weeks gestation will be given a chance at life.

Comments

  1. Loved this, Alison! I found my son’s feeding therapists in the NICU to be invaluable and they were wonderful advocates for him when it came to dealing with doctors who weren’t always willing to be patient with his feeding issues. And now that we have been home for almost a year, we lucked out again and got an awesome feeding therapist through ECI. Hopefully this trend continues, but if not, I will remember your advice to keep searching until we find one who fits my son’s needs the best. Thanks for writing this! and I am so happy that James is doing so much better with his feeding.

    • Thank you Beth! I’m so glad you have had excellent therapists to help with your son’s feeding issues. It truly makes all the difference!
      Alison

  2. Thanks for this, Alison. Our son is a former 25w3d preemie. He will be one year actual next week. He is doing great with everything but feeding. He has a g-tube which has saved him, and does take about 20% of his feeds orally. We feel like the speech therapy he has received has not been effective for him. We are just now going to a feeding program out of our area, and the goal is an out-of-state program eventually. The program is the Treat model. Can I ask which program worked for James? You can PM me if you like. Thanks again for sharing your encouraging story.

    • Hi Christine, I have read about the Treat model and it sounds like it’s been very effective. One of the people who developed it was trained at the Kennedy Krieger Institute, where James received his therapy. At KKI the feeding program is part of the Behavioral Psychology Department, and they use an ABA approach. There are definitely lots of opinions about ABA, but I think sometimes it is misunderstood. I’d be glad to go into more details of how they developed James’ feeding protocol. Email me if you have more questions. I’d love to hear how your son does with the Treat model. I hope it’s exactly what he needs!

  3. Hi Alison, This post was helpful and encouraging. Thank you. I’m curious, where did you end up taking your son for in-patient therapy? We are in TX too and right now I’m banging my head against the wall with my son’s slow progress. I haven’t even considered in-patient therapy as an option until I read your post. Thanks again, Kathy

    • Hi Kathy,
      We briefly attended an in-patient program here in Dallas, but it just wasn’t working for James at the time. We ended up at the Kennedy Krieger Institute in Baltimore. They were exactly what James needed and he made tremendous progress while we were there. They continue to be a great support now and help as we make changes and have questions. Feel free to email me if you have specific questions. I’d be happy to answer any that I can. Feeding is such a complex issue. I hope you find what works for your son soon!
      Alison

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