Posted By Posting
Aug 18, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Preliminary probe results...I'm confused....
So, in a way this is what I was expecting, but I'm still feeling pretty confused. I got a voice mail message from the GI, who was on his way out of town, so of course I can't get any clarification yet...

According to the Impedance probe, there was no abnormal presence of acid reflux. Form what he said, it sounds as though there was some non-acidic reflux, but that it did not correlate with our observations of coughing, swallowing or sleep disruption most of the time. He didn't say how frequently he was refluxing non-acidic material, nor how far up the esophagus it traveled.

Here's what confuses me: 1) Lorenzo is on no medications at all right now. Isn't stomach acid naturally acidic, and so, if stomach acid is entering the esophagus, wouldn't it be acidic? And if it's not stomach acid, what is it? 2) I'm feeling like we are about to, yet again, be tossed out on our own from western medicine because no one can figure out what the heck is going on, and so, the tendency in the past is to say, well, he seems to be doing okay, don't worry about it. But I DO worry about it, because I can't see where it is normal to aspirate, to have no REM sleep, to have such disrupted sleep and insomnia, to have tachycardia....

Ugh...he's waking up....I'll have to come back later....

Aug 19, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
So, I've answered my own question about non-acidic reflux, though I'm still confused about where we stand with it since I don't yet know how many episodes he had during the probe.

I don't know....I am just really feeling at a loss about how to deal with this. I mean part of me just feels like maybe this is just something he's going to be living with forever, and if it isn't causing him to have some major crises, then maybe I just need to stop trying to figure it out. But that's hard for me to accept. I mean, it is true that he hasn't developed asthma, or pneumonia or any of the other significant problems associated with refluxing and aspirating (which he only does occasionally); he's growing slowly but adequately, his cognitive development is great.... What's the problem? But I just can't shake the worry that he is headed for a train wreck, that his body is only going to be able to compensate for so long, and if we could intercede now that might be averted. I feel like I'm going crazy...

Aug 19, 2010
dcd
LorenzoMama... I'm sorry, this sounds so frustrating. Could his sleep and other issues be attributable to something other than the reflux? I'm just wondering if there's some other kind of specialist out there besides a GI that might have some insight. Not that I'd know where to start. It is hard when you get news like this...you're torn between feeling grateful the results aren't really terrible, but it's almost as bad to go through all that and emerge with no answers, just more questions.
Aug 19, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Yeah, we are back to considering the probability that Sensory Processing Disorder is the biggest underlying problem, so we are doing some intensive alternative therapies and scheduling with an OT to get started trying to to address things from that assumption. We also need to do some closer exploration of allergies as a potential factor. It is mostly just frustrating to me that we are over 3 years into this, and it feels like we have been spinning our wheels for so long..... And it is so confusing, the interaction of all the components of what's been going on with him.
Aug 20, 2010
kavyamom
Lorenzomama, Your situation sounds so frustrating...Kavya is going to be 2 years soon and I also feel like we are spinning our wheels. Especially when the endoscopy came back all clean I felt like we are back to square one with everything. We tried zantac, prevacid solutabs, prilosec compounded, prilosec capsule, nexium, and finally we are trying prevacid capsule now and it is the only PPI that she is not screaming on so I am a little hopeful that this might help. Has lorenzo tried any PPIs (in your profile you mentioned only zantac)? But if it is mainly non-acidic reflux I guess that is not going to help. What is his current sleep pattern? Kavya gets up every 2 hours and sometimes even every 1/2 to 1 hour if we tried some new food. It is very rare for her to get a 4 hour stretch. But last night with the prevacid capsule and zantac combo, she got a 5 hour stretch so I am keeping my fingers crossed. Keep us posted on your exploration of allergies...I will also be seeing an allergist soon.
Check with your
doctor first!