Experience with feeding therapy

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Allegra

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Has anyone here had a child in feeding therapy before? I’ve been concerned about my 22mo son’s feeding since he was an infant. I was specifically worried that he might have tongue tie and lately took him to a speech therapist because I felt he was behind in his speech and his pediatrician wasn’t dealing with my concerns. The speech therapist felt he was a little bit behind the curve for speech development, but not to the extent that therapy was recommended. She did refer him for a feeding evaluation though, because of my concerns about his choking and gaging frequently and not wanting to eat many different textures. He had his evaluation and they confirmed that he doesn’t have tongue tie, but he is gagging (even moreso than I had noticed) when attempting to chew and swallow certain textures. They’ve tentatively diagnosed him with a “texture based food aversion” and they’ve recommended that I bring him to weekly therapy sessions for the next half a year. (I can’t find the screaming emoji that used to be there on the old site, but this is where I’d be inserting it.)

We both work full-time and we can’t take off once a week to take him to weekly two-hour appointments between the epically inconvenient hours of 10AM to 4PM. (With an hour off for lunch at noon.) So, even if we were able to swing this therapy for him, it definitely wouldn’t be with the practice that evaluated him.

Does anyone have any advice? I got a book from the library on “food chaining”, in hopes that I could do this at home, but the contents of the book can be summed up as, “You’re to dumb to do this on your own. This is why you need to get your child a “feeding team”.” So, not a lot of help. I did get him to eat grapes this week and he even gave pineapple a totally legitimate try. (lots of kids hate pineapple because of the acidity)

This week, I’m going to start looking for other practices that might have more reasonable hours or who might be able to help us on a bi-monthly basis. If my husband took him to one session and I took him to the other, we might be able to make that work. I’m not currently concerned about his nutrition. He’ll eat any fruit or veggie from those puree pouches as long as there isn’t any chia seeds. He’ll eat chicken breast meat and chicken and apples puree, and chicken nuggests when he can get us to give them to him, as well as yogurt, peanut butter and milk. He’ll also eat watery oatmeal, bread, Cheerios, goldfish crackers. Aside from that, he likes watermelon, canned peaches, and recently grapes and cracker thin slices of apple. I’m pretty confident that he’s getting all his nutrients from that, but I’m worried that this food aversion could get worse rather than better. It really does seem to be a genuine physiological reaction, rather than just being a little table tyrant. Any suggestions on how to get this “food chaining” thing started?
 
Truthfully, I think you are overly concerned. The list of foods you provided are easily more than any “normal” kids I have known to eat at that age. Plenty of nutrition to be had within the list you provided. Whatever you do, don’t make this a big deal for your kid. Feed him what he is willing to eat at this stage of his life. Always offer other options, but leave it up to him as to whether or not he wants to try them. You don’t mention if you have other children. I know that once my daughter went to preschool and saw the other kids trying different things it opened up a whole new world for her. For some reason kids are willing to try things that other kids are doing.
 
I do have another child, but neither one is in preschool. The concern isn’t his current nutrition, as I said. He gets plenty of nutrition from the puree pouches. The problem is that he actually physically gags when he puts anything that isn’t dry crackers or puree smooth in his mouth. It even happens when he really wants to try something. He can’t go through life taking his meals through a straw.
 
On a side note, it looks like the parenting forum just literally popped up. I wonder if I’d get in trouble if I started a new thread there. I was wondering what happened to it.
 
I agree with you that finding another therapist with evening hours might be your best bet. But if there’s no significant progress in a couple of months, you might re-evaluate his need for therapy. Frequently kids have weird food “aversions”; my grandson won’t eat any vegetables. And I just fed my kids fruit when they were little as they refused veggies for quite awhile. Now my oldest is a vegetarian!
 
Allegra said:
y worried that he might have tongue tie and lately took him to a speech therapist because I felt he was behind in his speech and his pediatrician wasn’t dealing with my concerns. The speech therapist felt he was a little bit behind the curve for speech development, but not to the extent that therapy was recommended. She did refer him for a feeding evaluation though, because of my concerns about his choking and gaging frequently and not wanting to eat many different textures. He had his evaluation and they confirmed that he doesn’t have tongue tie, but he is gagging (even moreso than I had noticed) when attempting to chew and swallow certain textures. They’ve tentatively diagnosed him with a “texture based food aversion” and they’ve recommended that I bring him to weekly therapy sessions for the next half a year. (I can’t find the screaming emoji that used to be there on the old site, but this is where I’d be inserting it.)

We both work full-time and we can’t take off once a week to take him to weekly two-hour appointments between the epically inconvenient hours of 10AM to 4PM. (With an hour off for lunch at noon.) So, even if we were able to swing this therapy for him, it definitel
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Unfortunately, Allegra, I think you’re in quite a difficult position in the medical community. Because your son is getting nutrition they are less likely to act. In a case where a child will not take food by mouth, the typical answer is a g-tube or a GJ-tube. I do have a friend whose child this is the case for.

Therapy is often the only answer that medical science has. Can your nanny get him to therapy?

And please, please, do not take this as a slight against your parenting. You have been through a lot and acted amazingly. Is there any chance that what he is encountering is psychological based on the needs of his sister? I imagine he would get quite a bit of attention during mealtimes being cajoled to eat or rewarded for eating different textures. If that could be the case and you want to try things on your own you may want to watch some episodes of Supernanny.

Please, please do not think I am trying to make light of what you have endured or the struggles your son faces at all. I’m just throwing out a suggestion based on the knowledge that you also have a special needs child he’s “competing” with.
 
I’m satisfied that my son issue is more significant than him simply not wanting to eat certain foods. The therapists showed me how he was gagging with only the tiniest amount of soft carrot chunks mixed in with a carrot puree that he had no problem with. They told me that this kind of aversion doesn’t necessarily resolve itself and frequently becomes worse with time.
 
He’s not doing it for attention or control, as lots of kids do. The gagging and choking happens even when he’s voluntarily eating certain things. And we haven’t been fussing over him much. We’ve just been giving him what he wants to eat and continuously offering him new choices. Fortunately, the things he likes or tolerates are various enough that we haven’t had to push the issue for health reasons. I don’t see a g-tube in his future. He probably would drink pediasure without having to have it pumped in. He doesn’t really mind liquids. I could easily manage his nutrition with a shake diet, but that would only be putting a bandaid on the problem that his gag reflex won’t allow him to try any food he finds “weird”.
 
The nanny is unable to take him to therapy because she would have my other child and her own child and they don’t all fit in her car. Besides, I’m pretty sure the point is for the therapist to teach the parents how to do this technique, what to look for, how to prepare the food, etc.
 
Allegra said:
He’s not doing it for attention or control, as lots of kids do. The gagging and choking happens even when he’s voluntarily eating certain things. And we haven’t been fussing over him much. We’ve just been giving him what he wants to eat and continuously offering him new choices. Fortunately, the things he likes or tolerates are various enough that we haven’t had to push the issue for health reasons. I don’t see a g-tube in his future. He probably would drink pediasure without having to have it pumped in. He doesn’t really mind liquids. I could easily manage his nutrition with a shake diet, but that would only be putting a bandaid on the problem that his gag reflex won’t allow him to try any food he finds “weird”.
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Then it seems as if only therapy is the answer. There’s not really any other medical way to help him through than having a professional address the issue with all the nuance and knowledge they have. It’s good that he’s strong and healthy enough not to need medical attention to keep him alive. It’s a blessing.

I forgot, is he 2 yet?
 
Allegra said:
The nanny is unable to take him to therapy because she would have my other child and her own child and they don’t all fit in her car. Besides, I’m pretty sure the point is for the therapist to teach the parents how to do this technique, what to look for, how to prepare the food, etc.
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Sometimes yes, sometimes no. From my understanding with my friend, much of the work is actually in helping the child relax and “tricking” the reflex. Even if you learned nothing, the once a week session would still garner him more help than nothing.

You can typically get Dino Radians that fit across the back of a car, RF and can fit in most normal sedans. Some people have managed this with the Graco all-in-ones, too.

Not that that really solves your problem of wanting to be there, and feeding clinics have really restrictive hours. The only thing that could be a solution is a student who’s working on a degree in oral disorders being willing to put in volunteer hours during the weekend at home with your son. Might be extremely hard to come by, and a bit expensive, but I’ve heard of things like that happening.
 
Is there any possibility the therapist would come to the home? My daughter had PT and the therapist would come to the home.
 
Allegra said:
Not yet. He’ll turn two the beginning of November.
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Ok, so there’s still a bit of time before it becomes really urgent. Besides the tongue tie was he assessed for any tonsil or adenoid malformations? Has he had a full workup from an ENT to rule out any physical issues like a narrow esophagus, weak or swollen epiglottis or a malformed pallet?

Edited to add: Any check for reflux or reflux damage?
 
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I’m looking into that as an option. Our state has an Early Intervention program called First Steps and I’ve heard they might send a therapist to the home. I’ve also heard it’s free, if you qualify. I suspect he’d have to be diagnosed with something more official than “texture related food a4version”, but we’ll see.
 
Yes. All of his pallet and relevant facial muscles appear to be fully functioning, and the concerns I had about his lack of speech are resolving themselves. In just a month, he can now easily recite his alphabet and count to ten clearly, is copying all sorts of sounds and words, and is spontaneously using words and a few phrases in context. He’s still a touch behind his two-year milestones, but he’s approaching them.
 
Allegra said:
Yes. All of his pallet and relevant facial muscles appear to be fully functioning, and the concerns I had about his lack of speech are resolving themselves. In just a month, he can now easily recite his alphabet and count to ten clearly, is copying all sorts of sounds and words, and is spontaneously using words and a few phrases in context. He’s still a touch behind his two-year milestones, but he’s approaching them.
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So all in all he’s in a really good place. That should ease your mind. With the ability to understand and verbalize he will be a much better candidate for therapy.

So it sounds, basically, like your options are getting him a firm, undeniable diagnosis that would qualify him for the free therapy that comes to your home.

Has he had an upper GI exam? Don’t forget, because he can swallow liquids and purees, the issue might not be with his facial muscles but hidden in the back of his throat or esophagus. Once all medical reasons are eliminated you’re more likely to get a firm diagnosis that you can take to your EI program.
 
My daughter received therapy through our state’s early intervention program. It was free, though I recall they attempt to charge insurance, but if insurance doesn’t pay, then it’s free.

It was a good program. She matched well with her therapist, and I believe qualified for almost a year. They evaluated her I think every 3 months to see if she’d qualify. She’s 13 now.
 
We had an attempt at food chaining at dinner tonight. He ate tapioca pudding (which was already a stretch for him.) but he seemed to be doing okay. He was actually feeding to himself. Daddy mushed up an inch of banana and mixed it up, but after the first bite, he started to gag. I think he got him to try a couple of bites, but it was a “no go”. Maybe we’ll try a rice pudding first. He likes pudding. He likes rice. Maybe?
 
Allegra said:
We had an attempt at food chaining at dinner tonight. He ate tapioca pudding (which was already a stretch for him.) but he seemed to be doing okay. He was actually feeding to himself. Daddy mushed up an inch of banana and mixed it up, but after the first bite, he started to gag. I think he got him to try a couple of bites, but it was a “no go”. Maybe we’ll try a rice pudding first. He likes pudding. He likes rice. Maybe?
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Are you trying to address flavor or texture right now? Tapioca is excellent! Good for him

Also, how ripe was your banana? You might have more success with an extremely overripe one than mashing one that had any sign of green. Bananas can be very fibrous.

Have you tried plain pumpkin? It can be found in the baking aisle with the pie fillings near the pumpkin pie filling. Libby’s has a good 100% pumpkin.
 
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