pulling hair out…

I’m new here, so bear with me as I do not know a lot about reflux. Here’s what is going on. PLEASE help with any thoughts or advice. I seriously need some input here and do not know anyone else in my shoes. I so apologize for the length of this post, but I want to be thorough.

My 17 month old son was diagnosed (like his older brother) with reflux at around 6 weeks. He did have some “little boy issues” in the private area and had surgery for that early on. Because of that, I will say that he is a little developmentally delayed across the board, but not drastically so.

He did not sit up until he had his surgery, which was at 8 months. He also could not roll over until then either. Once he started both, we weaned him off the Zantac as many seem to get better when they are more mobile. Also, at the same time we switched from breastfeeding to regular formula.

At a year, we started table food. Around the same time, we went from formula to whole milk. Here is where our problems begin.

He had 3 horrible episodes of reactive airway disease (like asthma) and ended up in the hospital for each of them….once for a week!!! He also started having chronic ear infections and was diagnosed with a hernia in the groin area. (sigh…so much going on!) Each and every time he had a reactive airway episode, they would do bloodwork looking for infection, viruses, ANYTHING. All of it came back completely negative. I kept insisting that he was having episodes when I put him back on the whole milk. NO ONE would listen to me. Finally, they ran allergy tests and immunoglobin tests (tests immune system). The allergy test (including milk) came back negative, which made me look and feel like an idiot. The immunoglobin test came back very low.

We ended up on allergy medicine and preventative breathing treatments. This just seemed totally strange as we have NO family history of allergies or asthma. Since the blood work came back normal, they just assumed it was allergy related.

So we went to another city to have the hernia repaired and ear tubes inserted since the ear infections never went away. (We are in post-Katrinaville, so it couldn’t be scheduled together or for many months here.) When we saw a new set of doctors, one of them asked if he had reflux. I told him that I didn’t think so. He explained that reactive airway, ear infections, and waking up screaming with clean bloodwork sounded like possible reflux to him.

So when we came home, I gave him Zantac that we had from awhile back. The first week, it worked like a dream! He slept all night and seemed fine. Then the waking up at night screaming started again. (He goes to sleep both for naps and at night on his own in his own bed. I mention this because my pediatrician started suggesting that he was crying to be held and rocked.) I took him in to the pediatrician and asked her what she thought about what the other doctor had said. She seemed a little miffed that I was attempting to tell her what I thought was wrong without her ever suggesting that. Oh well. She gave us a rx for prevacid 15 mg. split into 2 doses. She still disagrees that it could have anything to do with milk, but I’m telling you….there is a big difference in him when he has milk! Last night was our first night on the Prevacid. I did go ahead and keep him on milk yesterday. He woke up only twice screaming, but both times went back to sleep without too much intervention.

Now…about when he wakes up at night. He wakes up SCREAMING. Without any medication, it starts about an hour to an hour and a half after putting him down. We pick him up and give him something to drink. Usually, he takes a small sip then continues to scream. He arches his neck backwards to the point that it is hard to hold onto him while he also tenses up almost every muscle in his body. He will finally fall asleep facing outwards in a semi-sitting position. When we lay him back down, he usually starts screaming again. It then continues every 1-2 hours until about 2 AM. Then it seems to stop for the rest of the night. He wakes up happy in the morning. He is generally happy all day long except when he he wakes up from his nap. Sometimes he wakes up happy, and other times he wakes up too early screaming (about 1 hour and 15 minutes after going down).

I will finally mention that he is in the 5th percentile in weight, but he seems to eat well in my opinion. He does seem to have a lot of gas and more than one dirty diaper a day usually. I don’t know if this plays into it or not. Other than this issue, he is a very laid back, happy baby.

My questions:

Does this sound like anyone else’s experience with reflux?

Has anyone else had issues with reactive airway that can’t be explained except by reflux?

Why did the Zantac not work this time around if it’s reflux?

Is Prevacid a good course of action at this point?

Is it normal to notice MORE burping and hiccupping after starting Zantac or Prevacid? (Doesn’t seem painful for him….just not what he usually does.)

If you’ve gotten this far, thank you so much for reading! I just feel very out of sorts with this since most kids with reflux (that I know) are younger and grow out of it and have more symptoms.

Thanks!

Cindy