Posted By Posting
Aug 31, 2010
kavyamom
Lorenzomama and others: Probe questions
How does an already restless and poor sleeper actually sleep with a probe in place? Do they sleep a little worse with the probe than without one? Does the child eat/drink normally with the probe in place? Kavya refluxes a lot but since the endoscopy showed that she doesn't have damage I am thinking that her refluxing is mostly non-acidic. Lorenzomama, can you please email me at sandhya.nagarajan@gmail.com and let me know which facility you got the probe placed (I think your second experience was better than the first so myabe you can tell me the name of the first place as well so I can avoid it). Thanks!
Aug 31, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Once the tube warms up, it's not too bad, but then again, Jedd had his NG tube for soo long I think he was just used to having something shoved down his nose. :(

We noticed that Jedd's oral intake went down a tad when we had the probe in place. I ended up having to tube feed him the rest of his feeds to make sure he got enough during the day.

He was already a really good night sleeper by that point, and was used to having tubing run through his PJs, so he still slept fine with it in.

We noticed more gagging when he was eating as well but as the day wore on, he stopped and was only limiting how much he was taking orally in stead.

We had Jedd's Impendance Probe done at Nationwide Childrens' Hospital in Columbus, Ohio by the GERD and Motility specialist there.

We traveled out of state as here in VA they don't do Impendances, they do PH Probes. We also had other Motility testing done while there that was not available at all here in VA as well.

Sep 01, 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.
Well, incredibly, just as for the sleep study, Lorenzo did sleep -- not well, not as long as he would have without, but he did sleep. Curiously he didn't have any of the usual easy to observe reflux episodes that night. I, on the other hand, did not, so be prepared for that....I was so worried that during one of his wake ups or confusal arousals (of which he has many) he would pull the thing out, plus you are supposed to press a button for each symptom observed and we were trying to correlate sleep issues....well, I just didn't sleep. He was able to eat normally, but seemed to favor liquids/soft foods (not that that is so different from the norm either, but...), and he coughed more than usual. Some kids get a bloody nose when its put in and/or when it comes out, though Lorenzo never did. He was pretty sensitive about his nose for awhile, though.

I will email you with the info you asked for.

Sep 01, 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.
Z did fine, too. He slept well (except when I woke up and found the damn wire around his neck! Anyway, we had a slumber party in the livingroom that night...I was afraid to put him in his crib with the wires...He didn't eat well, but no differently than normal.
Sep 01, 2010
kavyamom
Thanks everyone for all the info. If the results show that the sleep disturbances are mostly due to non-acidic reflux there isn't much that can be done, right? All the medicines in the world aren't going to help in that case I think. I guess if the sleep disturbances don't correlate with the refluxing, then I guess it indicates behavior issues or some other medical condition like allergies, etc. Anyway, I am still debating whether this test is going to be useful or not...
Sep 02, 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.
Well, if the non-acidic reflux is correlated to a lot of sleep disturbance or a sleep disorder, AND the lack of sleep is having a negative impact on her health or development, then they would likely recommend either trying Reglan or, if the effects were very serious, surgery. The impact on her well being has to be significant for them to suggest those, however, as both come with very significant risks and no guarantees. I had not really understood, even though Jessica told me :), that for Lorenzo, had there been a direct correlation to all of his symptoms, they would likely have started the surgery conversation. As it stands now, he is doing well enough overall, and the serious effects of the reflux (aspiration and apnea) are infrequent and/or mild enough right now that we will not be having that conversation at this point. That leaves us in a sort of difficult state of uncertainty, but for us, it was important, after 3 years of dealing with it, to better understand the state of his reflux.
Check with your
doctor first!