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Feeding Programs for Oral Defensiveness

These posts are from Margie M., mom to Ryan who has had a g-tube since 3 weeks and has some oral defensiveness, include information on feeding programs:

Next THE BIG NEWS for the week. I am a little hesitant to brag here but Ryan has consistently done this since Wednesday, so here it goes - Ryan has been putting his baby spoon with food on it in his mouth. Yes you read right he is putting his spoon in his mouth with food on it. He is not very coordinated at eating and swallowing (remember right now he gets all his meals via g-tube feedings) but at least he is getting some food with flavor in his mouth. He even gets angry when I take the spoon to put a little more food on the end. I guess the consistency is paying off. He still won't let me go anywhere near his mouth but this is all part of oral defensiveness. One step at a time. We are lucky where we live we have a lot of resources to pull from in this are we live within an hour of DC and an hour and half of Baltimore. Anyway the doctor yesterday recommended another feeding program at a very reputable center in Baltimore. I am going to look into that for Ryan.


I am sitting here reading all your responses to my bragging THANK YOU ALL SO MUCH. I know a pinch of food on a baby spoon is a long way from getting the g-tube out but it is a start. Anyhow I wanted to tell you all about a feeding program that we are thinking of enrolling Ryan into.

The doctors slowly but surely have been telling us we need to find a feeding program for Ryan. Now as usual mom here has to do the foot work. Well I asked our local pediatrician about it on Friday and he gave me a number of a program at a renowned center in Baltimore. The center has been there since the 60's and this feeding program has been there since 1978. They have all kinds of programs that are tailored to your child's needs. Ryan is a candidate because of the oral aversions and the uncoordinated swallowing. Remember Mr. Ryan has been getting his feeds exclusively through the g-tube since three weeks of age and the NG tube before that. We need to get an appointment for the evaluation and to see what their recommendations for Ryan are. This program is supposed to be very intense and demands parent involvement (like I wouldn't be right there). The program will also help if Ryan needs therapy in other areas which we know he does and already gets some. I feel we are really heading in the right direction with the feeding issue.

Anyway I wanted to alert people that may be having similar problems with feeding (I realize there is only a small number of g-tube and n-g babies on here) but hopefully this will help. We know of two major feeding programs in our area and I am sure some other large children's hospitals and rehabilitation centers must have them also. The two I have found are both at rehabilitation/long care centers.


The feeding programs I am in contact with are a bit different than the ones most of us come into contact at respective centers when seeing the PS and ENT. Debbie we had had the same feeling that you expressed with the speech therapist/feeding therapist that we saw early on at our center. The programs we are in contact with are both at rehabilitation centers. They are multidisciplinary. They work on everything from behavioral modification with eating etc etc etc. They will evaluate Ryan for his needs and decide from there the type of program he needs. It is very intensive at first and will probably require a week impatient stay in Ryan's case. Many cases they do on an outpatient basis.  He will get all the therapies he needs including PT, OT, speech and feeding. All the doctors we saw today think it is time we look at these programs seriously but I am not sure if I am up to an inpatient stay quite yet.

Tom - Our ENT today said that kids like Ryan often like items we don't expect them too that they have different taste then expected. He mentioned these children often like toothpaste, vinegar, spicey foods etc and usually do not like sugar foods.

Pat - One of Ryan's major problem is that low tone does effect the swallowing and his tongue. Ryan has not a clue of what to do with his tongue or really how to swallow well. This is why even though he now puts some foods in his mouth we really need to get into a feeding program like the one I have described.

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