I’m so sorry to read your story- it really brings me back to very difficult times. Your story sounds almost exactly like ours. You can read more details by reading the link from Laura’s post above.
The first sign that something was wrong with Hailey was the feedings- difficult feedings, eventually very difficult feedings, and finally impossible feedings and a feeding strike. It took us getting to the point of the impossible feedings for us to get the reflux (silent) diagnosis- but even then, the meds didn’t fix the problems with the feedings.
The first thing was that the dose wasn’t high enough- some babes need higher doses to get relief, and also for us, that we were giving a compound that wasn’t being made properly. In your case, I suspect that your son needs a higher dose. Also, for kids with feeding problems where it’s hard to get them to eat, they often don’t consume enough per feeding for the solutabs to work really well. You might want to look into caracream/buffer babies (you can do a search on here for more details).
The other thing is that if he’s been in pain for a long time, sometimes the feeding aversion can be hard to break, even when the pain is controlled. For us this was the case unfortunately. Some people have been able to turn the bad feedings around- others have not been able to do it as easily. It really depends on the baby and how persistent they are, how much they remember the feeding pain, and how strong the fear of eating is. I’m glad to hear that you’re not force feeding anymore- whoever gave you that advice did not tell you something good. Yes, it’s important to try to get the food in, but forcing it is definitely not good for feeding aversions. We also ended up sleep feeding, and unfortunately it led to Hailey only drinking bottles while asleep in her chair in her room until she was about 2 years old. But we had no choice, it was the sleep feeding or the feeding tube. For us, I chose the sleep feeding, others have chosen the tube. It’s a personal decision. The doctors we saw didn’t think there was a problem b/c Hailey gained fine. They didn’t care that I comitted every minute of my day and night to trying to feed her for over 1.5 years. For us, the first step was getting the pain under control with a good dose of prevacid in caracream. Once I knew that the pain was well controlled and her tests came back showing this, then I knew that we could address the feeding. We tried to switch to goodstart to alimentum, like you, but were unsuccessful b/c the feeding aversion was already in place and she wouldn’t take to the switch. But others have done this successfully and may be able to advise you on how slowly and how to try this switch if you want to. I just couldn’t get her to do it, and b/c her intake was so low (also around 12-16 ounces a day with a lot of persistence while sleep feeding), we couldn’t force the issue. The next step for us was feeding therapy. You might want to try the same thing, but the pain really needs to be well controlled first.
Hang in there. It does get easier, but unfortunately sometimes it’s a long road. How is he with solids or drinking from a cup? If it’s any consolation, we started feeding therapy at 8 months until around 15-16 months, can’t remember the details anymore. By age 2.5 we had a very fussy eater on our hands, but an eater nonetheless. By age 3.5 we now have a finicky eater who drinks with a definite repetoire of foods to eat, with her own likes and dislikes. I never thought we’d be here. But now it’s hard to imagine that we were once there. It’s hard. Try to get as much help from others as you can. And don’t be afraid of getting other opionions if your doc won’t try other doses or approaches. There’s a doctor’s recommendation page from Laura’s intro, and maybe you can find someone in your area who can help you. HUGS.
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first of all the prevacid probaby isn’t enough…http://www.marci-kids.com is at the forefront of researching dosing of PPIs in infants
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