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Aug 25, 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.
Impedance Probe results
So...some big surprises and some confirmation of what we already knew. The big surprise -- and this is a HUGE surprise to me, was that Lorenzo has only 1 reflux episode of any kind (and it was acidic) while sleeping, and it wasn't correlated to a sleep disturbance (I noted 10 sleep disturbances that night). That strongly suggests that his multitude of sleep mysteries are not directly related to reflux...

He had a total of only 47 reflux episodes, 11 were acidic. I didn't really know what to expect by way of numbers, because I only see a few obvious episodes happen each day. The general impression given by the Dr. was that this indicates a normal physiologic pattern of acid reflux. The two things that were noted as potential concerns were the correlation to coughing and hiccuping -- that there seemed to be a fairly close correlation between his episodes of coughing and hiccuping with reflux (acidic and non-acidic with the coughing, non-acidic with the hiccuping).

It's a little confusing to me still. I don't quite understand how one determines how much acidic reflux is not likely to cause damage versus that which is likely to cause damage, and I continue to not understand why no one is concerned about the aspiration episodes he's had. I mean, I get it that if he isn't getting pneumonia then his body is handling it well, but how is it normal to aspirate on reflux? And given the indicators of neurological issues on the sleep study (total lack of REM) am I crazy to be worried about WHY he has aspirated in the past? Do I just need to let this go and wait to see if a crisis develops -- which seems to be what his doctors are saying?

We are doing an intensive alternative therapy approach right now, and seeking OT for potential sensory processing issues (which, I'm currently theorizing is responsible for most of his health issues). I'm just hoping we're doing the best we can for him....

Aug 25, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
if it's any help, we had our PH impedance probe done at 18 months...152 episodes in 24 hours and 30% were acidic I think...pretty bad...not hard to figure out why it's SO easy for him to vomit, but also helps to understand how someone LIKE him can have little to no damage...his reflux is largely non acidic... I hope you can figure something out for L...Z is still having flares occasionally, but it IS better than it used to be.
Aug 27, 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.
Thanks for that -- it does make a difference just to know some of the ranges that are seen on probe results, since it's rare to actually have anyone describe them in detail. It's all still just very confusing, and of course, now he is sick and so he is having a lot more reflux and his breathing and coughing at night sounds awful...

I think Lorenzo is a lot better than he used to be, too. I guess I just never expected to still be figuring this out almost 3 1/2 years later...

Aug 27, 2010
kavyamom
When Lorenzo gets up (you mentioned 10 sleep disturbances), what does he do? I think sometimes you mentioned that he coughs. Does he fully wake up and is it hard to put him back to sleep? I hope the intensive alternative therapy helps with the sleep. Sleep deprivation is so stressful for both mom and baby. HUGS to both of you.
Check with your
doctor first!