Okay, our little guy Max (now 17 months old) is 100% tube fed since birth. He has never fed orally though we are trying REALLY HARD! He is a habitual mouth breather and doesn't want to swallow - even his own saliva secretions - he is a big time drooler. The mouth breathing started when his adenoids swelled up so bad he couldn't breath nasally but he has since had his adenoids out (twice) so I think the mouth breathing is habitual now (if I hold his cute little lips together, he can breathe through his nose though he prefers not to).

Anyway, we try "feeding" him orally three times a day while we're having meals. Feeding him involves basically trying to sneak in tiny amounts of pureed foods or handing him a cookie which he usually just plays with. He has progressed very slowly, at least he now doesn't gag whenever he gets a taste. And, he used to be distressed just holding a cookie but now he plays with them and occasionally brings them to his mouth but then he freaks if he gets any crumbs in his mouth. He'll either spit them out or try to pull them out of his mouth with his finger.

We struggle to get anything in his mouth. He shakes his head if we try to get a spoon in his mouth...he's more receptive to food from my finger but he now has seven teeth so....ouch.

He doesn't really swallow. If we manage to get a bit in his mouth, he has learned to spit out the food by blowing raspberries.

Our OT doesn't have a whole lot of suggestions right now other than to try to encourage him to close his mouth, keep trying with the food cause even if he doesn't swallow, at least he is getting oral stim, and to keep it positive. As he gets older we may be able to reason with him but she says for now just keep trying.

Am I missing anything? Is there more I can do? Any tips on actually getting more food in his mouth (he hasn't yet developed adequate fine motor skills to feed himself) or how to encourage swallowing?

I could go on and on in this post, but it's late and I just wanted to get something down...

Please help!

Vicky

Hi there Vicky...
I'm sure you have already mentioned this somewhere, but why was Max tube fed from the start??
I really can't be whole lot of help to you as I have not experienced this with my guys. I know that it must be so very hard to try and get the little guy to put things in his mouth. (((HUGS))) You sound like you're doing an awesome job! :D I'm sure other mummy's will be along to give you some more ideas...... hang in there!!!

Vicky--

I have no tube experience, so I really can't help you, but I know you'll get some input from the other ladies. Just wanted to wish you luck! Hope he starts eating for you very soon!

Max used to be distressed just holding a cookie but now he plays with them and occasionally brings them to his mouth but then he freaks if he gets any crumbs in his mouth. He'll either spit them out or try to pull them out of his mouth with his finger.

At the feeding clinic we went to last April, we learned there are something like 25 steps to eating, the first few being able to tolerate looking at food, progressing to touching it, bringing it to the lips, etc. So it IS a very long process. I will e-mail you the list of steps as it is copyrighted. But hopefully it will help you see that Max has made real progress.

He doesn't really swallow. If we manage to get a bit in his mouth, he has learned to spit out the food by blowing raspberries.

Daniel has mastered a technique of sticking his tongue way out, then closing his lips around it and scraping everything off. I swear, he does not miss even the tiniest morsel.

Our OT doesn't have a whole lot of suggestions right now other than to try to encourage him to close his mouth, keep trying with the food cause even if he doesn't swallow, at least he is getting oral stim, and to keep it positive. As he gets older we may be able to reason with him but she says for now just keep trying.

I think D has exhausted our OT (who actually only lasted a few months) and STs. He really has gotten the best results, as far as I can tell, through hippotherapy (horseback riding) with an ST. Where he goes, they take kids as young as 18 months. Something to look into for Max? I think it works for D just because he has such a fun time and he's in a terrific mood when they start offering him snacks right on the horse.

Am I missing anything? Is there more I can do? Any tips on actually getting more food in his mouth (he hasn't yet developed adequate fine motor skills to feed himself) or how to encourage swallowing?

I'll look through my info and see if I can come up with anything else that'd be useful.

My guy started solids at 14 months of age and prior to that was 100% food averted. We got food into him by distraction and smearing puree onto the roof of his mouth and immediately plunking in a bottle and praying he swallowed and this would yeild us maybe a lick to a tablespoon a day. He got very good at "pushing" everything out of his mouth regardless of how we placed it in. At nearly 22 months of age now, he still pushes tons of stuff out.

We had horrible experiences in the highchair and found that once we moved him over to a booster seat things got a bit better and he was more open minded about seeing food in front of him. (He did not get reflux meds until he was 14 months and is not tube fed) We allowed lots of play, introduced Gerber little dippers, a toy or two for distraction, and eventually he started using the dippers himself to feed puree. GERDlings are very oral sensitive, so a spoon is not the best for them. Also, if he is drooling or has a ton of goop on his face, resist the urge to "scoop the goop" with the spoon as most GERDlings will freak.

The key is to relax and make it fun. Easier said than done. It takes forever it seems to get children to have an interest in food when it has caused them pain in the past or in the case of tube feeding I would imagine he does not have the same recognition of hunger pains. To give you a rule of thumb, solids are introduced at 4 months, so if he is now 17 months old and still a non-eater he is 13 months behind in feeding skills. That does not catch up overnight. We are at month 8 of a 10 month delay and now we are referred to a feeding skills behaviour clinic to work on behaviour and how Iain views food (and how we deal with it as well.) Our OT said it will take another year at least until he is intaking consistantly and over food aversions. :roll:

If he freaks with cookies, how about trying purees and sticking to baby foods first? We use Baby Mum Mum rusks here still as they are so easy to melt in the mouth. Perhaps you just need to experiment with textures and maybe go right back to stage one foods to get him interested. From there, they learn how to take on stage 2, etc. As Becky said, feeding is a complex process. Since he has been tube fed for so very long I really do not know what to say as I have not experienced that part, just having a non-eater which is terrifying.

How is his speech? Sometimes speech and sounds are helpful for swallowing as well. We are working with a private SLP until we get into a program for Iain next year for that. It actually has helped his swallow by playing with sounds and noises. Every little bit helps.

Take care. It is so hard to go through this. {{{hugs}}}

I am in the same boat. We are trying to introduce oral feeds to Sam and I am exhausted. Some days I think he will be OK and other days I think that he will be tube fed forever. He has done so poorly this past week that I gave it a break and have not offered anything in a few days. I think the break was more for me, but I will get back at it tomorrow.

Sam seems to have some neuro issues--I really do not see it as a food aversion for him. I think he just needs to learn how to eat.

Has your guy had swallowing issues??? Sam was aspirating food to his lungs. We are to repeat the swallow study soon--but he has to swallow something to do it so I have not set a date yet!

You are doing everything I have been told to do. I hope it is just a matter of time.

Am I missing anything? Is there more I can do? Any tips on actually getting more food in his mouth (he hasn't yet developed adequate fine motor skills to feed himself) or how to encourage swallowing?

Vicky,

We've been through the major drooling well past Evan's second birthday, and well as major feeding aversions. Like the others suggested, try making eating fun. Distractions from a parent or a sibling, or a favourite toy or video can really help. It took us roughly 2 1/2 years to train Evan to eat.

You mentioned problems with the spoon. Metal spoons and forks are horrid for kids with feeding aversions. The rubber tipped ones are supposed to be the best, but when things are really bad around here, we still have to resort back to finger feeding, which is where we are again today. :( Another thing that you can try doing to get him to learn to move the food around in his mouth (a precurser to chewing) is alternate which side of his mouth you put the food into. You can desensitize him orally by using a Nuk brush. It has a rubber nobby on the end. From there, you can try using an electric toothbrush. Start slowly with each, by doing it on the legs, arms and hands for AT LEAST a few days before trying the cheeks and the mouth area.

Please keep us posted on how the feeding is going!

Pretty long day for us today. I'm really tired but I need to post and get some advice. I apologize in advance for the length of this post but I don't get on very often and am going to have a busy couple of weeks.

Today we saw GI, ENT, Opthalmology, Surgeon; we are going with the J tube surgery. It will happen on Monday - this coming Monday, the 5th - unless there aren't enough beds in ICU. (They want Max in ICU for the first day post-op because of his history with obstructive apnea.) He may be in hospital for as little as 2 days or possibly a week...NOT looking forward to that. We also found out he needs glasses - don't know why that makes me upset - I mean, both me and my husband have terrible eyesight and it's not like glasses are such a big deal since he's been through surgery etc...sometimes I think I am a nutbar!

But what I'm most worried about is the discussion we had with GI regarding getting Max to feed orally. GI doc says that we have a limited window in which to get Max to be comfortable feeding orally (assuming his vomitting gets under control and he is able to be fed in his tummy) and that is until he is about the age of three (so we are halfway there). After that it is very difficult (from what GI doc said, I understood this to mean impossible) to get kids to feel good about eating. He said at this point we need to work on reducing his vomiting by slowing down his tube feed rate. The less Max vomits, he explained, the more comfortable he will feel about swallowing food. He said to also concentrate on a variety of textures and tastes rather than actual volume. He said texture is actually more important than taste because it is being comfortable with texture and knowing how to handle different textures that will help Max be successful with orally feeding. But introducing different tastes is also important. He said don't worry about volume because he is getting his calories via tube.

This 3 year window thing has FREAKED me out. Have you folks heard of this? I feel a LOT of pressure to get this sorted out. I feel like I could really screw Max up in terms of feeding if I don't "get it right" and get it going before he turns three.

What are your thoughts? Any hints on different textures to try? (GI doc mentioned - smooth, grainy, clumpy, stuff that scatters.) Why hasn't my OT told me about this stuff re the closing window?

Another DUMB question :oops: - I keep seeing mention of different stages of food (Stage 1, 2, 3) - I'm not familiar with these - I imagine it goes from liquid to puree to lumpier stuff but can someone give me the low down on this?

Anyway a very tough day for us today. Feeling pretty down and cried lots this evening...:cry:

Thanks to all for the encouragement and help...I love you guys!! It is SO GREAT to "talk" to people who understand how difficult this is.

Answers to some of the questions you've asked in this thread about our little Max:

1. Why is Max tube fed?

Well from birth he had lots of difficulty feeding. The nurse who first attempted bottle feeding him (which she did without my knowledge when he was only 2 hours old) could only get a few ml's in him so she NG fed him. (Spent lots of time agonizing over this after I found out much later - that maybe if I had been there to try to feed him he may not have all this trouble - gosh we can always find something to feel guilty about can't we?) He seemed to lack the suck/swallow reflux and refused to feed at all. I TRIED SO HARD to get him to breastfeed and also bottle feed. He began showing good signs at the breast after 2 months of putting him there every 3 hours during his NG feeds; but he lacked the skill (or desire?) to actually draw out milk. It was more of a comfort thing for him - nuzzling up to me and being held. Anyway, once his reflux got really bad, and his NG was being puked out like 3 times a day, he got very orally defensive and wouldn't go the breast at all (this was very very hard on me). We soon moved to a G tube and very slowly worked on getting him comfortable with mouthing objects etc. For the last year or so we've been trying to feed him orally. We started with trying to finger feed him (he wouldn't tolerate anything other than my finger in his mouth) drops of breastmilk - without much luck - he would just let the liquid pour out of his mouth; we thought we'd have more luck with solids but that also proved (and continues to prove) difficult.

2. How is his speech?

Max is delayed and will be seeing SLP in a couple of weeks (hopefully he is home and recovered from the J-tube surgery by then). He makes a few sounds - vowel sounds, da-da, ja-ja, gee (hard 'g'), kee (hard 'k'), he blows raspberries, kind of also makes a 'voo' sound. He can clap and has started to wave but doesn't use any other gestures. I am going to look in to private SLP because we are on a 3-month block system here and that concerns me.

3. Has Max swallowing issues?

When he was in the SCN (special care nursery) he had a swallow study done which showed no aspiration or penetration but that he pooled liquids. (The study was a bit of a disaster because he couldn't take a bottle so they just squirted the yucky stuff in his mouth with a syringe. The first squirt we could see he swallowed perfectly, but subsequent ones he just let pour out of his mouth; needless to say he was SCREAMING the whole time.) We haven't had a study since because he is not intaking enough volume. He has never aspirated when vomiting thankfully.

Okay, that's it for now. I'm very tired and emotionally drained. Thanks for your patience in reading this post if you've made it this far!

Good night...

Vicky

Not sure why my last post had the Author as "Guest" 'cause I swear I logged in!.....:?

Vicky

Vicky,

You have the right idea with the stages of baby foods. Stage 1 is a smooth puree of single ingredients. Stage 2 is also a puree but in larger size jars and may contain mixed ingredients (i.e. apples and blueberries). Many parents think stage 2 has more texture to it but it is still is really a puree. Stage 3 usually contains mixed ingredients and may contain spices. They do have texture to them but often their textures are difficult to handle as they tend to have chunks of food swimming in liquid. It is really difficult for little ones to chew a chunk and swallow the liquid at the same time. As a feeding therapist I am not a fan of commerial baby foods beyond stage 1. I highly reccommend making your own baby foods. This way you can control the texture and gradually make his foods thicker then lumpier. It is really hard to make the fine purees that stage 1 offers but once your passed that point I suggest making your own. Not every child needs stage 1 though. If the child is used to baby cereal from a spoon, you can start off processing fruits and veggies right away. At first you can process them in a food processor. I had a mini processor and often used foods from our family meal. To make foods thinner or more finely processed you need to add more liquid to them. Later you can fork mash foods. After that you can progress to finely chopping foods. You can process meats in a food processor with enough liquid added to them but when your first introducing meats it may be easier to use commercial products.

Hope this helps,
Pam

I also came on as guest. My log-in name is pt.

Pam
PAGER volunteer, SLP, reflux mom to Ali 4-3-97

We're planning on changing the permissions to this forum today, so hopefully that will help. You may also want to set things up to log on automatically so that that doesn't happen again.

Vicky, I've been told that Daniel will be more receptive to eating as he gets older because 1. we'll be able to reason with him and 2. peer pressure will start to take a toll (in a good way).

Our friend/NICU nurse just told me that another one of her primary babies just called to tell her that her G tube was removed. This girl is now six and had been taking everything orally for the past year. She was a very sick baby and had used an NG or G since birth.

Good luck on Monday! You and Max will be in my thoughts. Please update us when you get the chance.

Oh yeah, I bet the glasses are upsetting because it's just one more thing. But I bet Max will look very cute in them!

Good luck with the J-tube surgery on Monday!

Since Max is still so young, hopefully the adjustment to glasses will be really easy. An optometrist (and not like the opthamologist, the optician, or the pharmacy) will probably carry a band to attach behind his head to help hold the glasses on if you have trouble. I understand how difficult it is to learn that he needs glasses, as we just went through that last April with Evan.

He said texture is actually more important than taste because it is being comfortable with texture and knowing how to handle different textures that will help Max be successful with orally feeding. But introducing different tastes is also important.
So true! He sounds like an amazingly knowledgeable doctor!

This 3 year window thing has FREAKED me out. Have you folks heard of this?
No.

Max is delayed and will be seeing SLP in a couple of weeks (hopefully he is home and recovered from the J-tube surgery by then). He makes a few sounds - vowel sounds, da-da, ja-ja, gee (hard 'g'), kee (hard 'k'), he blows raspberries, kind of also makes a 'voo' sound. He can clap and has started to wave but doesn't use any other gestures.
It sounds like Max is off to a great start for being only 5 1/2 months old (according to your sig. line). Since there's concern about his speech, have you already had his hearing tested?

It sounds like Max is off to a great start for being only 5 1/2 months old (according to your sig. line). Since there's concern about his speech, have you already had his hearing tested?

Oh my goodness, my sig bar was wrong!! Max is 17 1/2 months...sleep deprivation makes me stooopiddd!! I think I fixed it now. Yes, I would be so pleased if he was doing this well at less than half a year old!!

He has had a number of hearing tests which have given different results. The most recent one was done this past thursday. It showed he responds to human speech as low as 10db - so we know he can hear in at least one ear. Some of the other tests they do have been inconclusive because he either wasn't cooperating very well or because his ear canals are collapsed which makes some readings difficult (he was born with low set ears so I think things are bit tight in there or something). But for a while, he had quite a bit of fluid in his ears (before tubes) and it got all thick and infected (until we put him on antibiotics) which did affect his hearing. So that may have been one of the causes of his speech delay.

It sounds like Max is off to a great start for being only 5 1/2 months old (according to your sig. line). Since there's concern about his speech, have you already had his hearing tested?

Oh my goodness, my sig bar was wrong!! Max is 17 1/2 months...sleep deprivation makes me stooopiddd!! I think I fixed it now. Yes, I would be so pleased if he was doing this well at less than half a year old!!

He has had a number of hearing tests which have given different results. The most recent one was done this past thursday. It showed he responds to human speech as low as 10db - so we know he can hear in at least one ear. Some of the other tests they do have been inconclusive because he either wasn't cooperating very well or because his ear canals are collapsed which makes some readings difficult (he was born with low set ears so I think things are bit tight in there or something). But for a while, he had quite a bit of fluid in his ears (before tubes) and it got all thick and infected (until we put him on antibiotics) which did affect his hearing. So that may have been one of the causes of his speech delay.