I don't know what to suggest about the medications, we never did any meds, but let me give you our experience.
My DS had reflux from birth. He also had oral motor issues affecting breastfeeding and later eating. He also has serious texture defensiveness, so eating has been a problem. He didn't start even trying solid foods until he was almost 2 years old, and his trying solid food was only because of feeding therapy. He didn't start actually eating any decent amount of solid food until he was 27-28 months. He was breastfed until almost 3 years old. He was diagnosed with Aspergers at 4 y.o. He is now 6.5 y.o.
1. He had craniosacral therapy at around 3 months old to help the breastfeeding issues - he would constantly chew on me instead of doing a proper suck. Yes I saw a lactation consultant - it was way beyond her experience even. She suggested the CST. After each CST session it was different each time, sometimes better, sometimes worse. He only had a total of 5 CST sessions, one per week. He was also getting physical therapy for torticollis at that time. So the combination of both seemed to help him figure out how to breastfeed - almost correctly, well, at least so it didn't hurt me so bad. Don't feel bad if you didn't get your DS CST early on. I'm not sure that, all by itself, if CST would have made a difference for my DS.
2. Since my DS has picked up eating very, very slowly, we had the benefit of seeing the effects of adding new things slowly to his diet. We discovered over the course of this that he has sensitivities to at least 13 different foods. In hindsight, I can see that my eating of foods that he was sensitive to caused him reflux through the breast milk. This was also compounded by the fact that I was also eating foods that I discovered that I am sensitive to as well. I was tested for IgG food sensitivities (you can get a blood test via directlabs.com) when my DS was about 1 year old and he was exclusively breastfed. I noticed that after I stopped eating the foods I was reacting to, my breastmilk was no longer "bubbly" (I pumped my milk sometimes because of the chewing and pain he caused me, so I could see the milk before and after changing my diet). Some of my food sensitivities are shared with my DS. So both of us benefited from finding and removing my food offenders. His reflux went to just about zero after I removed my/our food offenders. I never had him tested for food sensitivities at the time (ever try to get blood from a 1 year old?).
3. Since then I've discovered a few other food offenders of his. This was largely found by writing down everything he eats. We still do this. It has been very helpful in finding things he's sensitive to. His reactions vary with the particular food, but it can be an obvious rash, or something harder to pin down, like unusual flare-ups in behavior.
4. I do totally get the worries about changing your DS's dietary habits. We have probably *just* enough foods to keep our DS going. His diet is not all that diverse, but probably just nutrition enough. It does get worse when he's sick, though. And I have had to be creative at finding options when a kid has so many sensitivities. But it also helps him in the long run, because it's kind of a catch 22 - the foods that he's sensitive to also often make it such that he is even more sensitive to textures and has more problems eating. So limiting his diet ironically helps him to eat more.
5. We called in a private speech therapist who specializes in feeding therapy. I called around everywhere to find her and she has been great. She did NOT use behavioral techniques, she did play-based therapy. This was extremely helpful in getting him over the anxiety of even trying solids the first time.
6. We still deal with his limited diet and getting him to eat enough. But he is eating and has been generally healthy. I still try to get him to test a new food once in awhile, but I don't expect much. He pretty much sticks with food he knows. He also has a good understanding of which foods cause him trouble because we talk about it. Sometimes I feel bad not allowing him to eat something he wants, like the blueberry he's sensitive to, because he seldom actually indicates he wants to eat anything in particular. But as I explained before I know it's better for him in the long run.
I hope some of my experience is helpful to you. I would suggest you look into getting food sensitivity testing on him. Not simply IgE food allergy testing, but food sensitivity testing. This is a good starting point, but I would also suggest keeping a food log when you are ready to start identifying problem foods. I would also keep him in the loop as much as possible, letting him know you're trying to find what foods are bothering him. It may be that when you identify problem foods and remove them, he may have fewer eating issues and be able to eat more.
Let me know if you have any questions. I'm open to PMs if you'd like.
ETA: I also wouldn't expect your GI doc or any other mainstream doctor to know about or agree with food sensitivities.
Check in at the allergies forum:
There are probably more stories there of reflux getting better or going away with dietary changes.Edited by KimPM - 6/2/12 at 7:52am