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Apr 14, 2009
ttrumbo
PH Probe?
Our GI just ordered this for my daughter today. Would love to hear stories from other mom's on what this test was like. It sounds like it would be very uncomfortable for the baby and I would think they just try to pull the thing out of their nose the entire time. For those of you that did it, did it provide useful info?
Apr 14, 2009
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!
For us the pH probe was helpful. It convinced my ped that Mags actually had reflux that was acidic enough to cause the problems I was describing to him.

She was 8wks when we had hers done. It was much worse for me than for her :) The only time she was uncomfortable was during insertion and taking it out. While it was in, she didn't know it was there. It wasn't a problem. How old is your lil one?

Apr 14, 2009
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!
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Apr 14, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
My son had a ph probe done at 8 months and the insertion wasn't painful for him because it was placed while he was under anestheia for an endoscopy. He really did hate having it in and tried to pull it out the whole time. They taped it up to his face really well and boarded and taped his hands so he couldn't pull it out. Even with all that he still managed to pull it out during the night. It did provide us with a lot of information as my son refluxed almost all day and night and pretty much had battery acid coming into his esphoagus constantly. It also was done in conjuction with a sleep study for us and that helped prove that the reflux was the cause of my sons apnea. It really is a simple and easy procedure. I wouldn't worry about it.
Apr 14, 2009
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
Apr 14, 2009
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
Jedd tried to pull his out but it you tape it really really well form nostril all they way to the ear you will lessen the chances of it getting yanked all the way.

Apr 14, 2009
ttrumbo
My daughter is 5 months. The doctor said they'd place the tube in the hospital and then we'd just go home for 24 hours. It looks like for some of you it was done while staying in the hospital.
Apr 14, 2009
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
There are pros to going home. The top one being that the child can behave normally. the big downside....what are you gonna do it the equipment malfunctions. AND you will need to stay up to monitor the times and the symptoms you see for them.

Now we had an Impendance Probe done. but we had a "constant" in the room for the full 24 hours. She logged all the info into the machine. She logged when Jedd: ate (what he ate and how long), slept, moved, burped, coughed, hiccuped, changed positions, ect...this was done all night long. We had 3 constants overall. Basically ALL of his activities were logged into the machine.

We also made it a point to allow him to run amok in the room just like he normally would at home. We have pictures of him standing on the heater grate looking out the window...LOL

There are pros and cons but I'd rather have it done IN than at home. JMHO though. Everyone is different.

Apr 14, 2009
mommato3
We are having one done on Thurs. for my 5 month old. We will stay in the hospital for 24 hours. We are doing our probe on prevacid. It has been confirmed by upper GI and symptoms thar he has the reflux. He is still having a hard time though so they want to see how acidic it is while being on meds. Has anyone heard of doing it while on meds? They want him off Reglan and on prevacid.
Apr 14, 2009
mommato3
Jessica-That is the sweetest video.
Apr 14, 2009
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
AWW thanks. Tube feeds really did save his life....sigh...I love that kid. and I love his tube....:-)

Ours was done off meds. Don't know that I can say I know anyone who has had it done ON meds...LOL

Alot of times they do it off to see how bad the GERD really is. We had to come off Prilosec and all motility meds for Jedd's.

I would guess that as long as they know he's on meds and take that into account while doing the test all will be fine.

Have you thought about doing a EDG to have a look see at what is going on inside???

Apr 14, 2009
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!
We had no problem at home but again it was at 8wks.

They do have little brace like things to put around their arms so they can't bend at the elbow. I knew an 18mo old that had to wear them for weeks. That might be a good way to keep him from pulling the probe. Just remember...it's not that bad and in the big scheme of things, it's only 24hrs. :)

Apr 14, 2009
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.
My son had a pH probe at 15 months, in conjunction with a sleep study. I don't want to freak you out, because our experience was definitely not the norm, but I think it is worth knowing what happened to us in order to avoid it (if possible).

The first challenge we faced was the four hour fasting, which turned into six hours when they ran behind schedule, and then over 8 hours when things went awry. My son was breastfeeding every 1-2 hours at the time, so it was pretty difficult to deal with the delay in allowing him to nurse. Then we were told that we shouldn't be present for the procedure, because he might associate any unpleasantness with us. I said I wasn't worried about that, and insisted on both being present and being the one to hold him wrapped in a blanket as the probe was passed into his nose. After the first placement, it took nearly an hour and a half before we got into x-ray to confirm proper placement of the probe. Once the x-ray was taken, it was revealed that it was not placed properly, so the whole procedure had to be repeated. The second time we got into x-ray much sooner, but again, it was not properly placed. The third time, we were told that it was properly placed after the x-ray was taken. As it turned out, that was not true, and it wasn't until two months later, when we went in to get the results of the sleep study that we were told that the probe had been inserted into his stomach, and the results were meaningless. As you might imagine, we were furious and disappointed and frustrated.

As for having the probe in place, my son actually wasn't much bothered by it at all. I thought he would go nuts trying to pull it out, and resisting the arm boards, but he took it in stride and never complained once the probe was placed. Had the test been performed properly, it would have given us extremely valuable information, and in spite of how it went for us, I still recommend the test.

Best wishes for as easy a time of it as possible, for all of you!

Apr 15, 2009
mommato3
Thanks Lorenzomama! That is good to know. My son is having a video swallow directly prior to the probe insertion so he will have food on his tummy although they said they may do it before his swallow study. They told me that he may vomit when they insert it and that's why they want it empty. I can't stand to see him vomit so I'll push to have it done b/f the swallow but maybe they can use the same machine as the swallow study to see if its inserted correctly. I'll post my experience of Friday. It will be inserted tomorrow. It's nice to have found other mommas who have gone through all this.
Apr 15, 2009
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
Yes, they like them empty because they can and will vomit when it's inserted. When ever we placed Jedd's NG tube in him at home we always did it when empty. If you get a good nurse to place it she'll be fast enough that it will be done before they realize what's going on. I can place an NG in in less than a minute. Including taping it. Jedd's probe was placed about that fast as well. At Columbus there are only two special nurses that place the probes to make sure they are done right and quickly. we also got right into X-ray about 10 mins after we got down there.
Apr 15, 2009
mommato3
I just called Cincy and talked to they guy that will insert holden's probe. I guess they do it just like columbus and have one or two people that just insert probes. I called to make sure I understand that I was to take him off Reglan and leave him on prevacid for this. I got scared I misunderstood or the nurse didn't know what she was talking about. The guy said yes I did it right. They can be done on or off meds. They want to see if he is still having breakthrough acid while on such a high dose of Prevacid. I thought that was the reason for the scope but oh well. For those of you who had to have their arms restrained-Did they keep them restrained with the arm boards the entire 24 hours-to sleep and everything?
Apr 15, 2009
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
Your little guy is 5 months old right??? If so, you will be amazed that after about 45 mins to an hour he will forget the tube is in his nose. That's how Jedd was with his NG tube and the probe is just about the same size.

Just tape it really good and keep the cords behind him so he can't get to them. It should go smoothly. Just make sure to watch like a hawk cause even Jedd got ahold of his. But I think his was by accident as he was playing. He had NO interest is yanking it and he was 15 months old when his was done.

Apr 15, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I can't add too much more on this subject but when we did Adriane's first one she was about 8 months old. She was inpatient the entire time and she was on all of her meds. That included Zantac at the time. That was the only med she was on for reflux. Her arms were restrained the whole time with the arm boards and like Jessica said after about an hour or so it was not a big deal. We had a sleep study done at the same time also. That is what proved difficult with all the wires attached. We had another one this last summer and both tests for very helpful. The ph test showed very, very acidic reflux very often even with the zantac. That is when we started on additional meds. The way things are going now I would almost like to do the test again and see what it says.

Good Luck!

Check with your
doctor first!