Switch to PediSure in tube, no longer eating orally & a host of other issues

[lovemy3]

We had made huge steps with Jackson's oral eating. We were actually discussing reducing his tube feedings because he was eating so well orally. However he was a bit below weight so we decided to switch over to a toddler formula, get him back on track, and then cut back on the tube feedings. Mid December he was 18.9lbs. Today he is 22.11lbs. Too big in my opinion.

Early January we switched to PediSure (30cal/oz) at the same volume/rate he was getting previously on Similac (20cal/oz). He tolerated it well so we upped his volume a week later by 30 ml's spreadout thru the day. At the same time he got roseola so we stopped oral feeds. He began to reflux during his coughing episodes, we slowed his feeds and eventually went back to his previous volume.

Fast forward three weeks to now, he seems to be better on the lower volume however he is no longer interested in eating orally. He will take the food in his mouth but spits it right back out without a care in the world. He is still congested w/ increased nasal & trach secretions, he seems to be breaking in his molars as I can feel bumps on his lower gums, and he is chewing on his fingers/sippy cup with a vengeance.

I feel like there are a lot of factors at play here (teething, sick) but the big thing jumping out to me is that he isn't interested in eating anymore. He seems to have lost his motivation and desire. I think he is overfull with the Pedisure. He has gained 5 lbs in 6 weeks and his stomach is large/round again. I want him off this formula or either the volume cut because we need him hungry. He doesn't fight us when we feed him, he opens his mouth, smiles and then just lets it run out.

We go to his SLP today and I am discussing this with her. Has anyone else dealt with this with a formula change?? Any thoughts on Jackson's behavior? One of our nurses suggested holding a tube feeding and seeing how he responds to an oral feed a few hours later. I think I will try that this weekend. He is a chunk, he isn't going to starve by missing one feed. I have waited it out for a month thinking he is just struggling right now but I am tired of waiting.

[Caleb'sMom]

Somewhat similar experience...

Caleb was doing well with eating by mouth (for him...which still means he wasn't eating ANYTHING substantial but was finally taking multiple bites in a row). He wasn't gaining weight though. He would actually whine and reach for the bottle his formula was in that we were about to tube feed into him. So i knew he was hungry.

We had to increase his feeds because he wasn't gaining weight. At the same time he started teething horrible AND he got a pretty bad cold. He was very gaggy from all his secretions. His interest in eating was completely gone. He refused everything for weeks.

Since your little one isn't having a problem with keeping his weight up right now I would def. hold a feed and see how he responds. If he responds in a positive way towards oral eating then I would consider cutting back a little on his feeds.

Just a thought- the response may only be a slight improvement because he hasn't been interested in a while and has had eating problems in the past.

Finally- I'm going to PM you because I would like to hear about your oral eating experience with your baby and tell you about ours bc sometimes I'm not sure the next step to take.

Good luck!

[Ainsley's Mom]

Every kid's different so maybe our experiece won't matter, but for Ainsley it is typical to backslide with oral feedings during illness. We've been at this 5 years and there have been many times I thought she was on the verge "being able to eat orally". This summer I was doing blenderized food like I always had and she was drinking 2/3 - 3/4 orally(30-32oz per day). Then she got sick and would drink an ounce at each meal and that was it. I'm sorry if this is discouraging.

What I think it comes down to is that some trach kids have a hard time eating. And when they are sick they don't enjoy it as much. When they are tube fed, they KNOW you can just feed them. And when we do, they aren't hungry enough to be motivated. Typical kids can lose weight when ill because their appetite decreases. Kids, with tubes, we can prevent this but there are consequences to their oral eating progress.

Even if your child wasn't sick, but had increased secretions from teething and reflux from overfeeding, I think that can have the same effect. I too have tried withholding feedings to increase hunger. With the extra weight Jackson has right now it's probably a good time to try. The only thing to consider is that sometimes I think certain kids have legitimate reasons for being unable to swallow. In Ainsley's case I think when her reflux was bad and her airway was swollen from it, it probably was uncomfortable and difficult to swallow. So if things don't go well trying hunger then I'd hold off until he seems to be over the reflux, teething and has normal levels of secretions. Good luck!

[lovemy3]

After meeting with his feeding therapist yesterday she agreed that he has gained too much weight and it's time to drop a feed. Also stated that like you said Susan, his airway/throat is probably sore because we know he has been refluxing these last few weeks.

Today we are going from 5 feeds to 4. And will be offering baby food at 2 hr intervals in between. Tubes will be 8, 12, 5:30, 9. Oral will be 10, 2:30, and 5.

FT also said that it could be a week or more before we see any changes. Thanks for the honesty Susan, I would rather know real life than someone give me what I want to hear!

CalebsMom - send me a message. I can only share what we have done with our therapist but she has given a lot of great ideas.

[Sweet Harrison's mommy]

I would definitely hold a tube feed every once in a while and see if it helps. He isn't going to suffer if you do this sporadically and he has demonstrated in the past that he is able to consume a good amount of food. Maybe you need to stimulate that hunger in him to get him eating again??

What did your therapist say??

[Sweet Harrison's mommy]

ok, just read your last update. It sounds like you have a plan! Keep us posted on how it goes

[JandD]

Pediasure is very, very filling. I had a foster that had Pediasure and even though he was perfectly capable of eating, he never did because he was always full. He has FTT, delayed gastric emptying, and reflux.

Have you ever had a bottle? The strawberry is the most palatable. If you drink that, you won't be hungry for hours. I cut back Pediasure and sure enough, he began eating like a champ.

[lovemy3]

Thanks for that confirmation Jenna - we have dropped a tube feeding within a day he was way more interested in eating. We are not back to where we were before the switch to Pediasure but it's getting better everyday!

[tbhartman]

Glad it's improving. Pediasure is so calorie dense, it'd probably fill anyone up!

[JandD]

Yay! I am so glad that he has more interest in eating again. I ended up stopping all Pediasure over the course of a month. No, the weight gain wasn't as good but he didn't lose weight and I believe that food is best whenever possible.