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Preemies
TheShellSeeker
member
Met with feeding team & got recommendations
TheShellSeeker
member
in Preemies
Two weeks ago, we met with an interdisciplinary feeding team at the children's hospital (dev. pedi, nutritionist, psychologist, speech therapist, and our feeding therapist). John's been in feeding therapy since last Aug for hyperactive gag reflex and oral defensiveness. He is exclusively bottle fed and vomits any & all solid food the second it hits his mouth. We've made no progress with 6 months of feeding therapy so we met with the team for new ideas & perspectives.
I've been waiting for the letter with the recommendations of the team and it finally arrived today. They recommended...
1) increase his prevacid dose (J's been on this since he was a few months old for reflux)
2) try a soy drink instead of the milk-based formula that we are using now (Good Start 2)
3) continue with therapy
4) consider speech therapy so he can communicate better with us (??)
5) consider a gastric emptying study (we think he has delayed gastric emptying but J has never been formally diagnosed).
The psychololgist won't help until any & all possible medical issues are addressed. The nutritionist did tell us that J is getting suitable calories and nutrition (YAY!).
We meet with our feeding therapist Wed to discuss these options. I hope some of this helps. I just want my little boy to eat. 
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Re: Met with feeding team & got recommendations
well I guess it's a few avenues to explore.. I hope something helps.
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Yeah, I'm not very optimistic at the moment, though. I expected alot more from the team. Sigh.
Yeah. I mean, I'm not you and wasn't there, but I feel a little underwhelmed by that.
I swear, girl.. I'm so fed up with therapists lately. Maybe I'm not the best person to weigh in on it.
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I am so with you on that! I'm totally sick of therapists and specialists. I had alot of hope in this feeding team that they would help us yet I feel like we've been given next to nothing.
Yeah, increasing the prevacid may help J feel more comfortable but really....after a year and a half of fighting us on every feed he will suddenly magically want to eat?! And the soy will make it all better, too?
Then, they tell us to continue feeding therapy which has done nothing, add in speech therapy (ummm...how will this help feeding?), and do a gastric study (which may or may not help).
Yeah, underwhelmed is a good word!
Yeah. I mean.. he's taking liquids, so I'm not really sure about blaming DGE or reflux. I'm not saying NOT to investigate those.. maybe they can help. But it seems to me it has more to do with the solids themselves. Particularly since it's so immediate that he reacts.
You know Robbie has issues, too. And he does still have reflux, but for the most part, no pain with it any more. I do not believe it is the reason he won't eat any more. Perhaps it's the reason he stopped eating and now we have to overcome those associations.. but I don't think stronger meds will change his associations from the past.
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John also gags with the bottle. Sigh. We've been dealing with this for so long. It's so exhausting.
(hugs) to you in dealing with Robbie's issues. It sure is tough.
Good luck to you guys. Robbie's actually made a lot of improvement with solids/textures, but still won't drink anything.
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Just weighing in.
Those recommendations were kind of.....lacking.
I really don't see how the gastric emptying is going to tell you anything that relates to solid food. And really even if he has that most docs just put you on a motility drug and move to the next issue.
Speech therapy can actually help with eating. Esp. some of the issues your little guy has. The right speech therapist can help work on tongue placement, strengthening mouth muscles and combating oral defensiveness. I would look for one with some sort of experience with feeding issues.
Considering the fact that my little one is three and doesn't swallow anything I can't really tell you anything beyond that. Does J show any interest in solid food? Not to eat but just to check out?
ugh. feeding issues. I'm sorry. We've had no success with the feeding team either.
The idea with the DGE is that it contributes to John not wanting to eat because he is always full and never hungry. Also, reflux can be worse when DGE is involved. Sometimes if you treat the DGE, the reflux is better and causing less problems. John is still having problems with the bottle, too.
That's interesting about the speech therapy. I understand, now.
John does show interest in solid food as long as he isn't eating it! He wants to touch it, see what it is, watch us while we are eating but if you try to feed it to him, he turns his head and tries to avoid it.
I didn't realize he had trouble with the bottle too. It all makes sense now
Has he ever been on erythromacin? That and Prevacid help Olivia A LOT with her motility issues.
Have you ever tried an antihistamine for appetite stimulation? It made Olivia cranky and it didn't show any noticeable difference but a lot of kids find it useful.
The only luck we ever have with Olivia and food is if she can control it. She likes things like goldfish because we can't just put them there and if she doesn't want to swallow it she can spit out. Maybe over time that will help your little guy?
No, John's never been on Erythromycin. He's never been formally diagnosed with DGE although we're pretty sure he has it. 4 hours after a bottle, he still spits up milk.
We've never tried anything for appetite stimulation, either. Those are things to consider, I think.
We give John puffs - he has put them to his lips before but if any - even a crumb - gets into his mouth, he gags and throws up. He's learned that they are more fun to play with than eat so when we give him some, he throws them to the dogs instead of eating them. We let him have fun with them because at least it's a positive fun experience involving food - which he doesn't get with the bottle. I show him how I can eat the puffs and he watches me carefully but he won't mimic my action or let me put one in his mouth, sigh.
My mom just went to a feeding workshop (for kids that are trying to transition off of tube feeds). The woman had a suggestion to use powered stuff like salad dressing mix or koolaid to put on a child's tongue so they get the taste of food without having to actually swallow something with texture. Maybe he would do that?
Olivia's feeding therapist suggested crumbling up something like a Ritz cracker and just brushing the crumbs across her lips and then doing something else. So if he is sitting in his high chair, swipe the crumbs and then go back to talking to him/reading a book or whatever you were doing. The thought being that he might use his tongue to get it off his lips or some might just get in there and then he gets a little taste without it being overwhelming.
Hope that helps