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Nov 12, 2008
keely_and_allie
pH Probe and Scope
My daughter's gastro would like for us to do a pH probe and scope on my daughter, who is 3 months old. She has not responded to any of the meds we have tried so far. I'm a little hesitant to put her through these tests. Has any done these tests with their children? How bad was it? Thanks for your help!
Nov 12, 2008
bobblesmom
I am the Mother of 3 children, Alix, Aaron, and Aidan. Alix (5) had "silent" reflux until she was 5 months old; Aaron(age 2) has had GERD since he was just days old but was officially diagnosed with it at 4 months old and has had many tests to confirm it since. Aidan (8 mos) has no signs or symptoms to date thankfully. I never knew what it meant to have a "normal" baby since I had 2 pukers! Nobody understands how hard it is to take care of GERD babies unless they've had one themselves.
PhProbe and Scope
Hi, We just had this done for our 9 month old, Aaron last week. The PhProbe is the "Gold Standard" and will tell you if your daughter has reflux and the extent of it. Because you daughter is so little, you shouldn't have too many problems with it. I found it to be a nightmare experience because Aaron is so mobile that he kept getting tangled in the cords and I couldn't put him down. Basically what the PhProbe will entail is a very simple procedure. They will put a tube down your daughter's nose which will rest somewhere in her chest, something like midway down from what i saw. They will then take her for an xray to check the positioning of this probe and will make any adjustments as necessary. The tube itself will be tape down on her face, basically giving her a tape mustache. The other part of this will have a probe attached to her chest. These two cords will then be attached to a logger, or a small computer. You will be required to hit some buttons on this logger when your baby sits up, lays down, eats, finishes eating, fusses, spits up, or whatever other complaint they ask to monitor. You will also have to write these things down. At least, this is what our experience was. Because you are likely carrying your baby around most of the time and she likely isn't moving around, the test will be pretty easy that way. She won't be entirely comfortable because of this tube, but it is very thin so shouldn't bother her too much. Our problem was that my son kept getting tangled in the cords, despite the fact that I was holding him and the logger! I don't have the results yet for him so I'm not sure how good the test was but everyone I have spoken to tells me this is the way to go before having an endoscopy. Good luck. I hope she will feel better soon.
Nov 12, 2008
keely_and_allie
Thanks for sharing!
Nov 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!
We had the pH probe when Mags was 7wks. old. It wasn't nearly as bad as I thought it would be. She cried while they inserted it, but after that she didn't even realize it was there. The removal was absolutely nothing.

I think since it's not invasive at all, it's worth it.

I don't have experience with the scope but many here do. Hopefully they will be around soon.

Nov 12, 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
Impendance probes are actually the "new gold standard" for DX reflux. Our hopstial is getting rid of it's PH probe stuff and installing Impendance Probe stuff. The leading hcildren's hospatls have already done this. An Impendacne can tell the difference between acidic adn non acidic reflux on the PH scale.

The probe is simple. I have some pictures of Jedd with him Impendance in on my myspace account here:

http://www.myspace.com/theonionjewell

Some kids need to be off meds and some kids are allowed to say on meds, it's all the Dr discretion. We came off ALL meds for Jedd as per their instructions. He came off about the week prior to testing. Jedd's test was done at Nationwide Chidlren's Hosptial one of the leading GI hospitals in the Nation for peds.They are in Columbus Ohio.

If you want an Impendance done in stead of the PH one, you can ask for a referal and go out of town, that's what we did. Since an Impendance probe wasn't availiable at our hospatla yet, we got approval through the ins. co. and got it scheduled. Jedd was also gettign extensive Motiltiy testing as well taht is NOT availiable here so we were killing 2 birds with 1 stone..KWIM

The scope is avery simple procedure. Jedd was out all of 15/20 mins really. They took 4 biopse thorugh his GI tract starting with the esophagus. They test the biopses to see if anything other than reflux is going on. There are other DXs that mimic reflux, so they test for those.

they also take pictures so you can get to "see" how their tract looks.

Jedd had to stop eating at midnight the day prior for his and was allowe dto have liquids in the PACU after he was done. Jedd had an IV because he had to run ABX since his heart had been repaired just a couple of monhts prior to the EDG. That is standard protocol for him when ever he goes under sedation.

I hoep the tests give you some more answers to what is going on. They were worth it for us.

Nov 12, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
My son had a bronchoscopy at 3 weeks, and both my kids were scoped (EGD) when they were older -- 2 & 6 yr I think! A pH probe will tell you if she is refluxing, and is minimally invasive. Really no big deal. If she is having reflux, and not responding to meds, have they looked at other issues like changing formula or mom's diet (if nursing)? Mine both had food allergies, and when I ate their allergens, they were big time pukers. They still had/have reflux on top of them, but going milk/soy/etc. free really helped with the VOMITING.
Nov 12, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
my emily had a EDG or Endoscope when she was 10 months old. she had to be without food for 12 hours and no liquid for 4 hours. the hospital was very strict about this b/c the is a refluxer; they don't take aspiration lightly. it is possible, even under anesthesia, for them to reflux.

it wasn't as scary as i thought it was going to be- but if you ask emily you might get a diff answer (if she could talk!) the whole thing took about 30 mins, i wasn't allowed to be in the room while they put her under but some hospitals will let you. they took biopsies and samples and scoped for damage.

you get immediate confirmation of damage from the GI. when the procedure is over they will come and tell you what they saw and bring pictures too. some labs will come back in a couple days while others may take a week or longer.

when they come out of anesthesia she was groggy and spit up blood- but that was considered normal. the rest of the day she was a little fussy but otherwise fine. she was also more clingy that week too and slept in my bed, i think the doctors scared her.

i would talk to the dr about it more but it does sound like a scope would be a good idea.
Nov 12, 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
Here's a Slide show of Jedd's Impendance Probe
I always do a slide show because I can't get the others to post right...LOL

Oh and ignore the sryinge with the formula (orange stuff) he was being tube fed during the test because he refused to take enough orally. He has a sever oral averison and has been tube fed on and off since 9 weeks old.

Nov 12, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
emi's GI still sticks with PH probe is the "gold standard" thing. i was told that they will only do impedance probe on children who they suspect esophageal motility problems. Although i agree with Jessica and think that the impedance probe seems like a better option, you may have a GI like mine who sticks with the PH probe.

ultimately, from what i read, if the child has acid reflux, both tests are equal; the impedance only coming out slightly ahead in technology. the difference is shown when the child has NON-acid reflux. the impedance probe will give much more information on that then the PH probe. this comes in handy to know b/c treating non acid reflux with reflux meds might make reflux worse.
Nov 12, 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
I think the thinking behind the Impendance being better is due to chidlren who are vomitting due to DGE hence the reason why it is better for GERD. DGE is one of those times were GERD may not be present at all but the parents would "think" so because of th 4ever present vomitting. The vomitting would be due to DGe and not reflux in somecases. As in ours.

Both tests will give you lots of answers though.

Nov 12, 2008
bobblesmom
I am the Mother of 3 children, Alix, Aaron, and Aidan. Alix (5) had "silent" reflux until she was 5 months old; Aaron(age 2) has had GERD since he was just days old but was officially diagnosed with it at 4 months old and has had many tests to confirm it since. Aidan (8 mos) has no signs or symptoms to date thankfully. I never knew what it meant to have a "normal" baby since I had 2 pukers! Nobody understands how hard it is to take care of GERD babies unless they've had one themselves.
PhProbe note
I would say the whole procedure both in and out wasn't really that bad. It was just the way the probe was hooked up to Aaron that bothered me. I asked if it included an impedence test and was told that it did. What do I know? Aaron had to be off the meds 72 hours in advance, so he was off for 5 days ahead of time (the nurse who called to book the test told me 5 days). He wasn't allowed to eat or drink anything 2 hours prior to the test, which meant nothing after 5 am. He didn't get fitted until after 9am and was finally able to eat after 10am. That wasn't bad. The irony for me was that we were to have as normal a day as possible but our day was anything but normal. He vomited only once (a nice change), but his eating schedule was "off", he didn't have any bowel movements, he couldn't move around properly because of the logger. I just wonder what the data will show. I'm leary about putting him back on his meds because I have seen any difference with him on or off the meds--well, his puking has gone down considerably now, so maybe it was bothering him. Overall, the test really didn't hurt him; it was more inconvenient and clumsy than anything.
Nov 12, 2008
keely_and_allie
How did these tests change your treatment plan?
Nov 12, 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
For us, it didn't change the treament plan at all. I did however see a HUGE differnce in JEdd vomitting while he was off meds. We were also able to tinker with his formula a bit whiel in paitnet so ltos of goodies came out of it that we would not have found out otherwise. We were in patient allready and paying the co-pays whether or not he got the test.

If I was specifically looking for a test as far as reflux and hos sever it is, I'd do a EDG scope. You have to remember too that the Ph probe and the Impendance or only snapshots in time. LOTS of kids have good days while on the probe and then are normally much worse. So you have to take that into affect as well.

That's why I'd do the EDG instead. JMHO.

Nov 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!
Mags at 7wks with her pH probe:
Photobucket - Video and Image Hosting

Nov 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!
A pH meter is an electronic instrument used to measure the pH (acidity or alkalinity) of a liquid (though special probes are sometimes used to measure the pH of semi-solid substances). A typical pH meter consists of a special measuring probe (a glass electrode) connected to an electronic meter that measures and displays the pH reading.
Nov 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!
http://www.articles.complexchild.com/00002.pdf

this article compares the pH and impedance probe. Basically the same test, the impedance is just a little "tweaked".

Check with your
doctor first!