Joshua's Story

Controlling Reflux: A Solution for Joshua

By: Dawn

Joshua was born May 12, 1992, full term. He was diagnosed with EA/TEF, tracheomalacia, and GE reflux. After 69 days in the NICU, he went home with an NG tube, apnea monitor and medications for reflux, Tagamet and Reglan.

Joshua refluxed all the time, it didn't matter how long he sat up after meals or what position he was placed in. Joshua refluxed so much that I knew when he was about to. You could hear his stomach making strange gulping noises and a look would come over Josh's face. I could usually pick him up and race to the sink with him before it hit the floor.

Due to the pain from the reflux, Joshua wasn't very interested in eating. I had pumped for five months so in the beginning he received breast milk in the NG feedings. I also worked with trying to nurse him, but it wasn't successful. I did discover that even though all the typical baby formulas have to meet the same nutritional requirements, for whatever reason, Joshua refluxed a little less with some vs. others. I did end up finally switching to Nutramigen which is easier to digest and Josh did do best with this. Since this was a more expensive formula to try, I was able to get free samples from the manufacturer to see how he tolerated it. We had met the qualifications for the WICS program and they were able to supply Nutramigen to Josh after requiring a letter from his pediatrician that due to medical reasons, he required this formula versus the standard formulas. As he got older we started using goat's milk with the formula for extra calories and because it was easier to digest than cow's milk. Joshua also was going to speech therapy to help deal with oral motor control, consistencies and textures, and positive oral stimulation.

Unfortunately, Joshua's refluxing problems were not solved. Joshua was a negative 10 on the growth chart and he was considered failure to thrive. We had to add vegetable oil to his formula for extra calories. The reflux got so bad that during the night he would wake and vomit a brown liquid that we later discovered was blood. The GI doctor we were seeing recommended that we speak with his partner who was fairly new to the practice and had dealt a lot with motility disorders and reflux in children. We were very impressed with Dr. Gunasekaran and the course of treatment he took with Josh.

Joshua had a barium swallow as well as a 24-hour pH probe and an endoscopy done. The endosscopy showed that Joshua had moderately severe esophagi’s, meaning the acidity in the reflux was burning/ulcerating his esophagus. Dr. Guna thoroughly explained what our options were. The manometry, which had measured the effectiveness of the esophagus contracting, showed that 5 out of 6 swallows were ineffective. Due to Joshua's poor motility in the esophagus, neither Dr. Guna nor his surgeon felt he would be a candidate for a fundoplication. In doing a fundoplcation, the stomach contents would be prevented from coming back up, but since his motility was so poor, it could also complicate movement of food into his stomach. They felt this should be done only after everything else failed.

At the time we were having these problems, Cisapride was not yet available for use in the United States. It was being used in Canada and the United Kingdom. We did have the option of trying to get it from the company through a compassion use basis or by going to Canada.

Dr. Guna did explain about another drug that was available called Omeprazole (Prilosec). He had written an article with Dr. Eric Hassell on the use of this drug in children with reflux. It was published in The Journal of Pediatrics, July, 1993. He thoroughly explained to us all the pros and cons associated with Omeprazole. This is an acid reduction medication that could have possible side effects, such as overgrowth of tissue in the stomach. The studies that had been done were in laboratory rats that had been given large doses of this medication. We were informed that Joshua would need a blood test every couple of months to monitor his gastrin levels. Dr. Guna had experience in using this particular medication in children and felt with proper
monitoring it would be worth trying, but the decision was ours.

We read available material on this medication and we made the decision to put Joshua on it. He was put on 10mg daily. It came in a 20mg capsule that we opened and gave him half with a spoon of yogurt or applesauce in the morning. We were to wait 15 minutes after giving it to him before his meal in the morning. Within a few weeks of being on the medication, Joshua had gained weight, was holding down his food and more willing to eat. The vomiting stopped!

His gastrin levels did increase greatly in the beginning. It peaked then tapered back down. He did maintain an elevated level, but not so much that the doctor was concerned. Joshua eventually went to 10mg every other day. He did have a 48-hour pH probe that showed the acidity levels in his stomach were being controlled.

I would like to thank Dr. Guna for all his help, knowledge and concern in the care of Joshua. I also want to thank Joshua's speech therapist who has played an important role in Joshua's life. She has helped him with oral motor control, switching to various textured foods when he was little and increasing his positive oral motor stimulation as well as helping with various other aspects of Joshua's eating and speech. For Joshua, during his stay in the hospital in NICU, being on the ventilator, coming home with a NG tube, and dealing with reflux, eating was not a pleasurable experience. He had much more negative oral stimulation when he was little, than positive and he needed the therapy to help overcome these obstacles forced upon him.

Joshua will now eat almost anything. He is a very slow eater and is the last one to leave the table at meal times. There are no evident signs of reflux. Joshua is still on the Omeprazole, 10mg, every other day. This spring we will be taking Joshua off of Omeprazole. He has been on it for close to 3 years and the doctor feels it is time to take him off the medication and hopefully Joshua has outgrown the reflux. In Joshua's case this was the medication he needed in order to control the reflux and let him eat without the discomfort of the acidity burning his esophagus.