19 month old reflux? Help!

My son has never slept well and was finally diagnosed with silent reflux at 11 months (he had a lot of signs but I didn’t know you could have reflux without a lot of spitting up: arching back after feeding, gagging then swallowing painfully , chronic mouth breathing, cough, runny nose, constantly begging to nurse). He went on Prevacid 15 mg. at night when he was 11 months old and we gave it to him for 3 months. Also we eliminated eggs and milk from his diet because an allergy test came back positive. During that period we weaned him from night nursing and we had 2 months of bliss when he awoke occasionally once, but sometimes went straight through until 4:00 am and we were grateful!

Then a repeat allergy test came back negative so we reintroduced all foods. Around the same time we tried going off the meds because the regular pediatrician convinced me that it had really been a nursing/limit setting issue not a reflux issue that was making him wake up. Unfortunately he also got the stomach flu a week after we stopped meds I nursed him at night for a few days because I was worried about dehydration (he wouldn’t drink at night from a cup) and my husband was out of town and I just got worried and exhausted and caved. Since then (in Sept.) he has awoken at least twice a night, sometimes more, but didn’t seem in pain until I tried weaning 3 weeks ago. Since Sept. we have not nursed at night but have responded to crying with soothing, hugs, etc. About 3 weeks ago I weaned him almost completely because the pediatrician thought that would help with sleep and eating solids. He increased his solids but his sleep got much, much worse. He went back to his waking 11-12 times a night rhythm on bad nights and 3-4 times a night on good nights. And he seemed in pain, he couldn’t get comfortable. He would even get out of bed and try lying on the hard floor. We accidently gave him a double dose of Prevacid one night (I didn’t know my husband had given him it already) and he slept until 4 am. So we asked the pediatric gastroenterologist if we could double dose and she said we could try it. We propped the crib and bed up and started meds. Immediately he seemed to be much more comfortable. Even with a new cold he only woke a couple of times and didn’t seem to be in pain and by the third day on 30 mg he was sleeping until between 4:10 and 5:20 with 1-2 night awakenings on a couple of nights and some nights with none! We were so excited, but then I went on a trip and his sleep while I was gone and sleeping at grandmas and now that I’m home is awful again (tons of night awakenings). Since we’ve doubled the meds it is not as clear that he’s in pain (no sharp screams with a refusal to lie down) but on the bad nights he seems genuinely uncomfortable and as always snores, coughs, mouth breaths etc.. We have an appt. In 2 weeks to see the specialist again (we’ve been on waiting list for 2 weeks already).

So to summarize, after we doubled the meds he had 8 good nights and 4 bad nights, with all the bad nights coming during or after my trip. I’m not nursing except at bedtime, and I do not nurse to sleep. I could eliminate that feeding but I’m concerned that reducing the breast milk and increasing the solids so dramatically is why the reflux came back and I’d hate to eliminate the milk completely if it’s acting as an antacid.

I am so confused. Does he have reflux for sure? Does he also have sleep dependencies? I don’t want to let him CIO if he’s in pain. We’ve never had a “test” done for reflux, they don’t do that kind of test here in Hawaii. Any ideas?

Thank you! rebeccamay2009-01-29 11:54:56