Posted By Posting
Jul 11, 2008
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.
pH probe and sleep study
Well, we finally completed Lorenzo's pH probe and sleep study. It was a bit of an ordeal, with two unsuccessful attempts to place the probe (with long waits for confirming x-rays) before a third successful attempt, some less than sensitive care from one of the sleep study technicians (although the other was wonderful -- big surprise, the insensitive one is a guy with no children, and the wonderful one was a woman with a 9 month old), and very little sleep to study, but Lorenzo was so amazingly patient and adaptable throughout. He even went 8 awake hours (about 5 hours longer than ever before) without anything to eat or drink without fussing about it, even though he kept asking for milk and I kept having to tell him he had to wait.

We won't have results for a couple of weeks, but if I was reading the pH probe recorder properly, it looks like he still has a lot of very acidic fluid entering his esophagus. It's disturbing, because he really never complains about it, and if we hadn't done this test, we would never have known...

As far as the sleep study goes, we were actually considering canceling that because we have been experiencing a bit of a sleep miracle. Since beginning craniosacral therapy a month ago, Lorenzo's sleep has improved dramatically. He goes to sleep more easily, even asks to go to bed sometimes, and stays asleep for 2-3 hours at a time (used to be every 10-60 minutes), and I'm not aware of any further apnea or tachycardia events.. He still only sleeps for a total of 7-10 hours in 24, but we're hopeful that everything will continue to improve. So I don't expect to hear anything dramatic from the results there, although I am interested in how his refluxing is influencing his sleep.

As always, I am so grateful for all of you, and this forum, for the information and support. I would never have pushed for further investigation if not for what I've learned here...

Jul 11, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
I'm glad about the sleep part! We went thru 3 pH probes studies...ugh! But it is a great way to determine if the reflux is under control or not. Hope they figure that one out!
Jul 11, 2008
jedd'smommy
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
He may not be complaining because what is coming up could be NON acidic reflux. A PH Probe can't tell the difference between the two. So if the probe comes back saying the reflux is totally OUT of control and that is not the physcal traits you are seeing at home or during the test. He is probalby having NON acidic relfux. Meanign the reflux is being controlled by the meds.

Even if the test was conducted after coming off of meds, they are still sotred int he boayd in the liver so they can still be curtailing th eacid for some time. Esp. in children who take a high dose of their med.

The only test to be able to tell the diffence between acidic and non acidic reflux in an Impendance probe. Most of the major children's hospitals are moving to doing those and eliminating the PH probes all together.

Even our local hosp. for child. is moving to Impendance probes and gettign rid of their Ph stuff.....

Jul 11, 2008
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.
Hmm...now I am confused. I understood that the pH probe indicates the pH level of the fluid in the esophagus. Is that not the case?
Jul 11, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Yay! i'm so glad that it is over for you guys!!! I am sure that if there is anything that shows up on his sleep study, they will point the blame to the reflux. I know it is so nice to have some answers! So glad to hear that the craniosacral therapy is working for Lorenzo. Quinn has had about three or four PH probes and it is so hard everytime they have to shove that tube down. A few times, they had to take it out and re-shove it because it was coiled. She would throw up blood and her nose would bleed because of how much she fought it. It was a terrible ordeal. I hope that things turn out well and that everything is treatable. -Sarah
Jul 11, 2008
jedd'smommy
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
The PH prbe only checks for reflux. ALL reflux, I t can't tell the difference between the two types of reflux. That is why MOST children's hosp. are moving to the Impendance probes.

The machine they use is calibrated to each child's body. So it is a more exact test for reflux. Because children's can be refluxing and it can be non acidic. Jedd does it all the time even though his is 100% under control with 2 types of meds.

That is why our local Gi sent us out of town for testing. He knew you would get better results with better technolgy.

Sometimes you hav eto treat the wya a child is acting as well. Jedd woudl vomit and it w aslike nothign, no pain or anything, that is non acidic reflux at it's best.100% acid controlled.

Like with any testign you have done, it's asnapshot in tot he life. It won't always get the perfect picture. That is why alot of GI will treat the symptoms the child has.
Jul 12, 2008
seamus' mama
Seamus was born 7/6/07, one month early with Silent Reflux. Zantac since 3 weeks old, currently taking herbs and probiotics.
I am sooo happy to hear that sleep is better! It makes me feel wonderful..We are having better sleep right now- Waking every 2 ours instead of every hour. I hope you are beginning to catch up on some much deserved sleep! The probe sounds like it takes a lot of patience..Its great to hear some positivity in regards to Lorenzo and his sleep. I don't know how you've done it..The power of positive thinking can do wonders !! I have been meaning to email you but i've been swamped w houseguests and inlaws..I hope you have a good night and I am so glad the cranio-sacral work is helping !!
Jul 12, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Yeah, I was told the point of the pH probe was to read acid. That's what pH is....the level of acid. Low is bad, high is good. Maggie's levels were around 2-3.
Jul 12, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Measuring the pH in the esophagus helps determine whether or not acid is coming up from the stomach. Everything I've found says basically that. If it's measuring the pH, it's measuring the acidity.
Jul 12, 2008
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, that was my understanding too. There was a field on the recorder that had what I assumed to be the acidity level, as it was sometimes in the 6.5 -7 range, which would be normal, but often in the 2-3 range, which would be acidic. The reason I'm distressed at the possibility that the acidity would not be measured is that Lorenzo does not respond to pain like the average child. He has smashed his fingers in doors, fallen on the sidewalk, smacked his head on things, etc and rarely does he ever do more than just look at me as if to say, "what happened?"

The only reason we even did the pH probe was because of that -- we need to know if there's acid in there, because we already know he's refluxing. We just don't know if we need to do anything to reduce the acid to prevent esophageal inflammation, scarring and dental issues, as well as to understand if that is what is causing his night wakings.

Check with your
doctor first!