re: Beyond Early Intervention

Harriet Gilman — Mon, 28 Sep 2009 04:10:40 GMT

Jina D, did you get some advice and help? Has you son begun to eat more successfully since your posting last June? If you're still having trouble I will venture some advice.%0d%0aHarriet

re: Beyond Early Intervention

Jina D — Fri, 05 Jun 2009 04:46:26 GMT

Dear Stephanie,

I do really need your help with my 14 month old feeding aversion (spoon and ANY liquids).

Please excuse the length of this narrative, but we would really appreciate if any interested reader going through this first-person account of our son’s adverse feeding behavior. He is currently 14 months old.

The first signs of his adverse feeding behavior may have commenced when he went without any food from the time he was born to 3½ days. During this time I thought that I was giving breast milk but in reality there was virtually none. After this initial period of time, he would eat only between 2 and 3 ounces of pumped breast milk mixed with Similac for each feeding session. (Please note that all breast feeding ended at the end of May.)

This went on for about 2 months. Beginning the 3rd month, when I tried to feed him in my arms as I usually had done before, he began showing signs of great resistance such back arching, screaming, crying, and generally total unhappiness. This feeding situation went on for a few weeks and the way he was getting ANY nutrition of any kind was hodong him in my arms and forcing the bottle in between his sobbing. I was never advised by anyone how to feed him much less how not to feed him. Once in a while I would wait to see if he showed signs of hunger by not feeding him for a period of time. The longest was 7 hours. He clearly was not going to show when he is hungry. I tried to change his methid of being fed by using such implements as a syringe with a long thin tube and spoon with no success. I also changed formulae and suckling nipples with no success as well. It got to the point that he began to show signs of great hatred while he was feeding such no eye contact and would do all he could to distance his body from mine. This is wen I thought about feeding him in a small bouncing chair, thinking the motion might break this impasse. Although he cried each time he was fed in this fashion, he would eventiually quiet down after a few minutes so he can relax with the bouncing motion to the point of sleep and only then would he accept the feeding. The average feeding volume was about 4 ounces.

I went to his pediatrician for advice and he began ruling out what his condition may not be, such as reflux, and also felt there was no evidence of oral deformity. He felt this may be something behavioral instead. He offered no diagnosis but referred our son to a local children’s hospital, Rady, pediatric gastroenterologist. She tried giving him some relux medication anyway that had no effect. He wound up twice in the ER last July for dehydration. After this, at my insistence, I asked that he be admitted for 3 days at Rady for observation. He was given an upper GI, endoscopy, swallow test, and allergy test; all came back negative. The only advice we received was that if his feeding quantity does not improve he’ll need to start first start with steroid therapy and later be put on a feeding tube. The staff was good at telling us what NOT to do (e.g. force feed him) but unfortunately never said what SHOULD be done for us to avoid steroids or a feeding tube. From the hospital he was assigned to see an OT team at Rady for 2 months on a weekly basis. Unfortunately his sessions did not improve his feeding from the way it was going already (he was not increasing the amount of his food intake). Their advice was to begin introducing solids and for him to master a sippy cup so he would not need to be bottle fed any longer.

He refused using his bouncing chair. It got to the point that we were forced to drive him around in our car in order for him to get tired enough to feed. We discovered (and this is an extremely important point) that it was the motion of the car that tires him, so we bought a cradle-type swing that has worked in getting him totally asleep since this is the only fashion he will take any formula. The real danger we now face is that he will soon outgrow the swing and the reality of his starving is imminent. He is currently 50 percentile in his weight, height, and cranial measurements, but again we have to face everyone telling us how healthy and normal he appears. But not one person understands the incredible sacrifice it has taken me as his mother to pay such a tremendous emotional and physical cost to keep him from drugs and a feeding tube. From what I have read in the forums, there may be very few if any mothers with the same problem.

Everyone has been hoping that he will take in more solids before the outgrowth of the cradle-swing happens. But as of today, he is still way behind on eating solids and refuses any liquids given in any manner (cups, sippy cups, straws, spoons, skewers, etc.) especially if it is administered via these artificial means. What he will eat in solids is when he initially picks at this food and will take about 5 bites and that is the end of it. This happens despite my constantly changing nutritional recipes on a daily basis as advised by the Rady dietician.

I am pleading with anyone who is reading this to please let me know if you are familiar with his condition or if you know of anyone else that has gone through this similar situation, to let me know what to do. This would be extremely appreciated