AnonymousHi there.
Welsome to the site. I’m sorry to hear what you’re going through with your son. My daughter is turning two and we’ve been dealing with a feeding aversion almost since she was born, it seems. She also has reflux. Her aversion was really bad, and the only way I could get her to take any breast milk or bottle was to feed her when she was asleep, and even that was a struggle. We were facing a feeding tube for a long time, because it was just impossible to get her to feed, and later to eat solids.
What types of symptoms did your son have with his reflux when he was younger? Did he vomit or was it silent reflux? Did he eat? What was his temperament like? Did he sleep? Did he have any testing done? What type of meds was he on and how much? Does he have any allergies?
As for what he’s going through now- Can he talk? Can he tell you a bit about what’s wrong if you ask him?
Interesting that he was diagnosed with asthma, because that can also be a complication of uncontrolled reflux. The stomach pains make me curious about food allergies, or I guess even celiac. I think it’s a good thing that you have an appointment for a ped GI. I know that the appointment isn’t until August, but I would ask to be put on the cancellation list, and I would also call daily or every couple of days to see if there have been any cancellations. Tell them the gravity of the situation, and that you’re really concerned about his lack of intake.
I would also ask your ped to up his dose of medication. I don’t know how much he weighs, but I’m pretty sure that his dose is probably too low even based on conservative measuring. You might want to check out Laura’s intro stickied in the introduce yourself forum, and also http://www.marci-kids.com . Marci-kids is a great site in terms of reflux info- beware that they believe in very high and frequent doses of PPI, but even the North American society of pediatric GIs recommends at least 1-15mg/kg a day (which is also very low). In terms of the losec, I’m not sure how you’re giving it, but if it’s the capsule, then you need to give it on an empty stomach and follow it up with a meal 30 minutes later. You can sprinkle the capsule in a spoon of applesauce or something acidic but make sure that he doesn’t chew the little beads. You might want to try to get the prevacid solutab if you have it there- it might be called zoton- but I’m not sure if you have it. Do you have something like mylanta supreme that you can give and see if that makes a difference? If so, don’t give it near the PPI.
While waiting for the nutritionist, can you see if he’ll take a supplement like pediasure? That way you won’t have to worry as much about his lack of intake. I would also go back to the ped and see if he can push getting you in faster.
As for what do, I really think that you need to get some help from a specialist who can figure out what’s going on. I would probably push for some testing- maybe an endoscopy and/or a PH probe to see if it’s actually reflux that’s the problem and if there’s any damage. Like I said, allergies also comes to mind.
I would also try to get help from a feeding therapist to help give you some guidance, but really you have to get the root of the problem under control. While waiting, you can try to add calories to what he is taking in- give him calorie dense foods, and add butters and oils to his other foods. I would try supplements- pediasure, carnation instant breakfast- I’m not sure what you have in Australia. I might also call back the nutritionist and see if she can give you any suggestions or tips over the phone for things that you can add to his current intake to boost calories and nutrition. Here we have something called duocal which is calories and fats that are almost tasteless that you can add to liquids or foods. Ask your ped if he’s old enough to start a multivitamin so you don’t have to worry about nutrition.
I know how hard it is to watch your child seem to starve in front of you. It’s such an awful feeling. That’s why it’s so important to try to push for earlier testing. If things get really bad, you can always go to the ER, but of course, no one wants to go that route unless they have to. As for eating, I would just keep offering, but not pushing. If it’s any consolation, Hailey NEVER eats anything for breakfast (which is awful, I know), and goes from dinner the night before with a bottle before bed, to nothing until lunch, a small lunch, and a small dinner. We add extra calories through oil/butter on everything, and try to encourage fluids. We also try feeding her on the go things that she likes which sometimes helps, or do things like picnics etc that get some food in when she might not realize it outside of a typical meal situation.
Good luck to you, and hang in there. I remember the feelings of despair very well, and still get them sometimes when I don’t know where to go from here, and few people seem to see that we have a problem. Keep us posted.
BTW, Therese (evergreenie) is also from Aus, so maybe she can offer you some tips or advice.
