How did this happen?

Most people are surprised to find out that my child refuses to eat food. Some people don't know what to say, while others have lots of suggestions. It is still hard for me to understand how something that seems to be as natural as eating, isn't always a natural thing.
Ben was born at 36 wks. gestation. He was baby "A" in a twin pregnancy. He weighed in at a feather weight of 3lbs. 6oz., while his twin brother weighed a healthy 5lbs. 6oz. They certainly did not look like twins. Ben stayed in the NICU for 11 days while he had problems regulating his temperature, experienced jaundice, and learned to suck from a bottle. He was very difficult to feed, and for him to take in 1cc of formula took maximum effort on our part. It often took 30 minutes to get that 1-2 cc's down. He worked up to about 15cc, or half an ounce by the time he was discharged. He had to be fed every 3 hrs. and was limited to 30 min. per feeding. We were told to hold him as little as possible so as not to stress him, or to make him burn any more calories than he had to. His weight at discharge was 3lbs. 10oz. I was very nervous about taking him home.
Once at home, Ben put on weight slowly, but steadily. He continued to be difficult to feed by drinking only small amounts from a bottle, while his twin soon learned to drain a bottle. Ben's twin grew as he should and began to meet his developmental milestones, while Ben seemed to only gain inchstones. Ben would often aspirate on his formula as well. The most he ever drank was 6 oz., and that happened just a few times. He usually would get 2-3 oz. down, and then the fighting would start. I would keep the bottle in his mouth, and he would try to push it out. Eventually he learned to fold the bottle nipple over with his tongue so that he couldn't drink. I began to see a feeding therapist, but the going was so slow. During this time, he was diagnosed with developmental delays, and he was usually 3 or more months behind his twin. When solids were introduced, Ben was initially the better eater, but it wasn't long before his twin assumed that role. Ben would often choke or gag, then throw up what was fed. It began to take me longer and longer to feed him. I would reheat his food several times during a feeding. I also was told to add vegetable oil to his food to add calories--yuck!
By the time Ben was just over a year, I took him to a gastroenterologist. She performed an esophagogastroduodenoscopy. An "EGD" is a procedure in which a special scope is put down the throat, into the stomach, then duodenum, to examine for abnormalities. Ben's EGD showed redness in his esophagus, so a pH probe was put in. To do a pH probe, a probe is threaded through the nose, and then down the esophagus. It measures the pH of the esophagus at various places, and takes data for 24 hrs. Ben's pH probe showed moderate gastroesophageal reflux disease, or GERD. He was apparently having a lot of heart burn. He was given Prevacid as a prescription for this condition. I was hoping that the Prevacid would help make eating more pleasurable for him by stopping the heartburn, but he did not change his eating habits.
The GI doctor also prescribed a modified barium swallow for Ben to try to understand his aspiration of liquid. In the "MBS", Ben was given barium to drink that was of different thicknesses. It was discovered that he was aspirating liquids that were thinner than honey, so we had to thicken his drinks with a special thickener. That was a difficult thing to do since most drinks of that thickness will not go through a sippy cup. We had to use cups with no valves which were messy at best. He was drinking Pediasure for extra calories, and to his food we would add Duocal, a powdered calorie additive.
Because Ben had swallowing problems, we tried a therapy called VitalStim. VitalStim is done by placing small electrodes on the neck and throat muscles. A small current is introduced through the leads and will cause the muscles to contract. The concept is similar to lifting weights in that a person will contract their muscles multiple times in doing a repetition of weights, eventually strengthening the muscle. Ben's muscles were caused to contract multiple times by the electrical messages sent by the leads on his throat. The process is very painful, and must be endured for an hour, for atleast 20 almost consecutive days. I tried the VitalStim, but could only endure a few minutes. I admire my tough little guy for making it through that. The MBS following the VitalStim appeared normal, so that therapy worked well for Ben, and we feel it was worth it.
When Ben was 20 months old, we did another EGD to determine the condition of his esophagus. We needed to find out if the Prevacid was working. It appeared that the esophagus was healing, and the redness and irritation were going away. For that we were very excited. As part of the EGD, most doctors take biopsies. With this endoscopy, Ben's biopsies showed a large amount of eosinophils had gathered in his esophagus. An eosinophil is a white blood cell that is often associated with allergies. Ben was now given the diagnosis of eosinophilic esophagitis. "EE" is an auto-immune disorder in which eosinophils are drawn to the esophagus and cause irritation and inflammation. Doctors do not know why this happens, and really do not know much about the disease. A person with EE usually has a difficult time swallowing, food can get caught in their throat, experience a lot of pain when swallowing, weight loss, and refusal to eat. In Ben's case, he simply refused to eat. He had not gained weight, at that point, for 6 months. Although he was 20 months old, he wore a size 6 month waist. We were told that a nasogastric tube (NG tube) would need to be placed so that Ben could be placed on a purely elemental diet. An elemental diet is a highly specialized formula that has no food proteins, and is therefore hypoallergenic. Two days before the NG was put in, he quit eating and drinking.
Ben did well with the NG. We were worried that he would pull it out constantly. He very rarely pulled it out, but when he did, it had to be put back in. It is a difficult thing to pin your own child down and to put a tube down their nose and into their stomach. I often felt like a cruel mom, but I know that without the tube, he would die. One of the problems with NGs for kids, is that the tube can be felt in their nose, and down their throat. This often leads to a child developing oral aversions, and Ben did develop those. What that means is that he does not want anything near or in his mouth. He can no longer tolerate textures in his mouth. His gag reflex has moved forward in his mouth, so he gags very easily. The NG eventually caused an ulcer in his esophagus, so a gastrostomy tube was placed. (G-tube for short.)
Because EE is associated with allergies, we were referred to an allergist. He did skin prick testing, and all of those tests turned up negative. He then did a new type of allergy testing called a PATCH test, which measures a different type of allergic reaction that the body can have. He wore a bunch of metal disks on his back that had pure organic food pureed, placed on the disks, then taped to his back. After 48 hrs. the tape and disks are removed. When his was removed, the area where the corn meal had been was literally eaten off. It was the worst reaction his doctor had seen to the PATCH test. Ben is severely allergic to corn.
After being on the formula for atleast 6 wks., he had another EGD to determine if the formula had helped get rid of the eosinophils. Amazingly, it did work, and the eos were gone. With the permission of Ben's food allergist, we began to try to introduce foods again, but Ben continued to refuse the food, often going days without eating anything by mouth.
Ben continues to refuse food and drink. He is completely dependent on his feeding tube for all of his nutrition. We were referred to a feeding clinic to try to teach Ben to eat. The waiting lists are long for the few clinics that specialize in this, and it took us 4 months to get into one. I am relieved to turn Ben's feeding over to the experts, and hope so much that he can be helped.