Oral aversion problems in son need advice or just someone to talk to that is going through the...

[RyannKalebsmom]

I am new to this so bare with me.  My son is almost 3 and has been diagnosed as a failure to thrive since around 15 months of age.  He goes through speech and occupational therapy every week.  We have taken him to childrens hospital in akron ohio and he now goes to a gi doctor at cleveland clinic.they have told us he as an oral aversion problem.  he went from pocketing food in his mouth to spitting it out once its chewed up. he rarely swallows food. he was not drinking enough and kept getting dehydrated. we went through an ng tube and now have a g tube placed so that we can insure he gets the calories and nutrition he needs even when he doesnt seem to want to drink.  Me and his father are at wits end and do not know what to do to help him.  he has been on countless different medications and is now taking a higher dose of pepcid then he used to and is still not responding very well. if anyone has any ideas please email me at [e-mail] or post on here. i just need some advice...we have exhausted just about every thing we can think of and everyone has suggested in the past.

Ryans mom

[isisreturning]

My daughter has a long standing and severe oral aversion. She stopped eating entirely at age 11 months (she was on high dose chemo getting treated for brain cancer). She had an NG tube for about a year and has had a g-tube for 3 years. She is 5 years old now and is finally showing some interest in learning how to eat. 

We took her to feeding therapy when she was much younger - after treatment was over - but she just wasn't into it at all. Our feeding therapist advised us to take it real slow, to never force her, to let her come around to liking food in her own time, so that's what we've done. We've just relied on the g-tube.

Now that she is showing an interest in food, we have gotten involved with an intensive feeding therapy program at our children's hospital. She (and we) will spend the summer getting ready and then she'll do a two week outpatient intensive program for two weeks in the Fall. She will accept a wide variety of foods, but she doesn't chew, so it takes a long time to get through each bite because we have to wait for it to dissolve. She will swallow it once it dissolves. She doesn't drink very much; we're working on it. We're hoping she will start chewing after this intensive program; many of the kids that complete this program get 50% of their daily needs met by mouth by the end (right now 0% of her needs are met by mouth.)

It is really hard to force a child to eat and drink if they don't want to. We weren't sure if our daughter would EVER get the urge to eat by mouth. We finally made peace with it and decided that eventually she'd be old enough that we could just teach her how to make her own food and tube feed herself! Either way, she could eventually transition to caring for her own eating needs - by mouth or by tube.

[RyannKalebsmom]

So basically this problem he's having should improve with age...we are fortunate that he does chew up what food he puts in his mouth and that he does drink some from a sippy. He had to have the opening from his stomach to his intestines stretched open prior to the g tube. we have had problems since he was born...he had severe acid reflux along with aspirating every feed...he's still in a lot of discomfort and has trouble passing gas without a lot of pain. we have been through a lot of different therapy for his eating and had him eating but he got sick with a sinus infection for a month straight and that was the end of his eating. He has a low igg and gets sinus infections real easy. We are still dealing with him throwing up here and there. I thought with the tube his puking and the gas pain would all get better and while they have it hasn't completely. He is just now 23lbs...back in january he was down to 20.4lbs which brought on the ng tube followed a month or two later the g tube.