Trying oral feeds

[jingle]

Hi ,
Need some advice ,
Jiya is never oral fed since birth ,now she is 1year and 6 months always on NG feeds continuous .i spoke with dietician about increasing her breaks so she will feel hungry and try some oral tasting.Last week I started some oral tasting with puréed diet, but the minute she feels the tiniest bit on her tongue she gags and then there is this non stop yawning one after the other.She did it few times different time of the day?any experience? Those who had babies with continuous fed Ng how did they start eating.also she is cutting here molars now.

Thanks in advance

[kadiera]

Find a speech therapist who deals with oral aversions and feeding therapy. There are ways to work on the gagging - a lot of it is just practice, but generally, a speech therapist will be able to help you with specfic things you can do.

[IzzyB]

I agree, it sounds like an oral aversion and a speech therapist would be the one to help you. I also agree with getting off of continuous feeds. You will never be able to feed your LO properly with them never feeling hungry. It will also make life easier one you. We transitioned from continuous to regular feeds starting at 10 months very slowly. We then started gravity feeds at 12 months and started with those every 1 hr 20 minutes. We are now at feeds every 4 hours. I think we got to those around 14 months. SO it took us a little over 4 months to go from continuous to every 4 hours feedings.

We did the transition when we started testing of foods, because we knew he would never take food unless he was hungry. It also was a pain having a pump hooked to him all the time and it allowed us to do so much more with him after getting away from the pump all together.

[Caleb'sMom]

i would definently get a feeding therapist or an OT with experience with oral aversion and eating on board as soon as possible.

because she never ate as an infant (as many of these kids didn't) she has not had the normal progression of mastering a suck and swallow with the bottle and then move onto stage 1 baby foods. she doesn't know how to move the food around in her mouth so she just gags on it.

because she has never had the normal eating progression, the sensitivity of her mouth hasn't developed normally so things that would feel normal to a baby without issues causes her to panic and gag because that part of her mouth is sensitive

a therapist can work on decreasing her oral sensitivity and gradually work her up to being able to move food appropriately in her mouth and swallow.

trying to change around feesd in a way that could make her hungry will help but..if she doesnt know how to eat yet then in the beinning it may not make as great of a difference as it would once she knows how to eat.

you should be able to get such therapy through the infant and toddler program or early intervention program in your state that provides therapy to children under 3 years of age.

not trying to sound like a know it all- just have been/am going through this with my kid. it's a very long road to get a kid who has never eaten to start eating. slow and steady wins the race. for us i has been very slow and frustrating but consistency and patience is key. every child is different in this regard too. best of luck and keep asking questions. I have learned a lot on here in regard to this issue.

[Ainsley's Mom]

First I would not start with purees. And wait until she's not teething, that's too much. Just like an infant I would start with liquids. And just FYI many trach kids are texture adverse, so when you do start purees start with very smooth. Many kids seem to like smooth, not too thick, yogurt.

The yawning might be her trying to work the food out of the back of her throat. Non oral eating trached kids are not used to the feeling of stuff in the back of their throats.

I would try starting with dipping teethers in her formula, since she burps that up the taste will be somewhat familiar. And you might try dipping your finger in it as well and exploring her mouth as a means to desensitize. Once you see that she can swallow safely then you can move on to larger quantities or purees. Really it would be best to work with an SLP to show you how maybe at your local birth to three center. Also I would inquire about a speaking valve because they help with swallowing. It makes it a little easier to swallow.

You might want to ask for a swallow study if she hasn't had one.

[Cillian's Mom]

I agree with Susan, get a swallow study first, you want to make sure there are no aspiration issues before doing oral feeds. Good Luck

[kadiera]

Originally Posted by Cillian's Mom

I agree with Susan, get a swallow study first, you want to make sure there are no aspiration issues before doing oral feeds.

You know, we were told that a swallow study was useless if you couldn't get a child to take at least 10 ml by mouth. Which leaves me really confused about all the swallow studies everyone else is doing.... Alexander never had one, and if they push for one for Bethany now, we'll probably push back.

[Cillian's Mom]

Janet, that is very true. Cillian has had 4 swallow studies done and with the very first one, he was unable to take enough by mouth to see anything. We were told that this usually means that they need more work with OT and Speech to prepare them for the study so that they can take some of the small amounts of barium and the different consistencies. To prepare him for his 2nd study, we used Simply Thick (a food thickener) and his Speech therapist worked with him using vanilla flavored formula at different consistencies. We worked with syringe feeding first and them moved to a spoon. We found on that second study that he could handle honey thick foods but had "silent" aspiration with thin liquids so he wasn't cleared at that time to drink by mouth. For the 3rd one, he was a little under the weather and wouldn't take anything for the test and on the 4th......success.

[IzzyB]

When your child is older and supposed to take pureed food, it is a little easier. Because they put pureed food in and that tells them if they are able to swallow, how strong their swallow is, and if they aspirate. I will say they are not perfect and I have had my issues with swallow studies. Mainly because they don't give a child a chance, but overall for safety reasons they are good to have and they can really tell you want your child needs next. For example, we figured out that we can not feed our child on the vent. While this was awesome information to have, I wish they would have gone the step further and tested him off the vent. But our place is pretty strict on once they aspirate they are done. So that is where I have a love/hate relationship with swallow studies. Because he would have had a huge aversion to food if we continued to feed him on the vent, because we found out it would go up his nose, make him cough sometimes, then swallow, and then aspirate. All bad things that we had no clue was going on. He was telling us by not opening his mouth and overall being a pain to be fed. So now we are doing it off vent and he is progressing well, but we can't do real spoonful size of purees because they still don't know whether he will aspirate since they never tested him off the vent. We know it is better, because he is swallowing faster then before. So he no longer has an aversion to eating the food because it isn't be shot up his nose

[MelissaRyan210]

I have three year old triplets. Two of whom have very bad oral aversions.

What you are describing is daily life at my house (by the way, SO impressed you are able to still NG - we had to stop doing that long ago because they always pulled out the tube).

My two trached kids are on different levels but started at the same place you are. One will lick salty things if greatly cheered. The other will now chew things up but not swollow (and still gags all the time).

What worked best for us was finding the right feeding therapist. Keep in mind, there are good AND not so good ones out there. We never did purees around here. My kids didnt like them. I would suggest trying, but also try hard salty things that can be licked. Keep in mind that your child is going to have a hard time tasting so the more flavorfull the better. Think salad dressings, hot sauce, soy sauce.... you can try these straight or add to what you are already giving.

Also, try the oral desensitizing before hand. Brush teeth and then do food. They will gag and hate the brushing. Then getting food in the mouth wont seem as bad.

Good luck!