Infantreflux.org | pH Study - Infantreflux.org

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December 25, 2008 at 7:47 pm #59859

Anonymous
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Xavier is getting a pH study done on Wednesday. Anyone have any experience to share? Supposedly the results are really supposed to determine a diagnosis? I posted a bit ago that he was getting an endoscopy, he is 15 months and is still struggling with reflux symptoms. The endoscopy confirmed he has esophagitis, so since he has been on PPIs since he was 2 months old, teh GI wants to confirm it is acid reflux. Any suggestions/advice? He is in a lot of pain. 🙁

December 26, 2008 at 6:59 am #59867

Anonymous
Inactive

i suggest you ask for an Impendance test instead of a Ph test. The diffrence is that the impedance test measures teh acidicic and non acidic of the reflux. I am sorry tehy found esophagattis. You need some very strong dose of PPI. The sutdy is not painful. Just abit uncomfortable and inconvenient beacuse it ha sto read for 24 hous.

good luck!

Leo

December 26, 2008 at 2:16 pm #59869

Anonymous
Inactive

I asked about that and they don’t own that kind of meter. It is so frustrating, he is the only GI in a 2 hour radius and they don’t even have teh right equipment!!!!

December 26, 2008 at 4:09 pm #59871

Anonymous
Inactive

my daughter had a regular ph probe and it gave us plenty of information. it measured when she was having acid reflux episodes and when there was no acid—–i could watch it on a little monitor that was attached to the probe. i think that you will probably get plenty of info from the regular probe.

what else does your doc think could be causing the esophagitis if not reflux? i would think the scope would have given him plenty of info if he took biopsies.

our ped gi did both tests at the same time. sylvia had her ph probe put in one day, and then the next day they removed it when they went in and did her scope.

December 26, 2008 at 9:47 pm #59874

Anonymous
Inactive

Yes, you can get info from a regular ph probe, but they do this test when no on medication. the impedance test measures the acidic of reflux while being on ppi medication. Since he has been on medication for a while already, i suggested this one if posibble. If this test shows severe symtons while being on medication, they can maybe increase the dose and last resort suggest a fundo to avoid further damage to the esophagus (sp?).

I have driven as far as 4 hours one way to see a GI. I hope they can maybe refer you to a different one or maybe with a good dose increase of PPI your child will start to feel better.

there is more info about it here:

http://www.muschealth.com/multimedia/Podcasts/displayPod.aspx?podid=625&autostart=true

I also hope they can give you more anwers from the biopsies.

hang in there.

December 26, 2008 at 9:52 pm #59875

Anonymous
Inactive

Gianna wrote: I asked about that and they don’t own that kind of meter. It is so frustrating, he is the only GI in a 2 hour radius and they don’t even have teh right equipment!!!!

You can go out of network if the test you want is NOT offered in your area. We did and don’t regret it for a minute. If there is that much pain present I’d want the BEST test out there and right now the new gold standard for GERD DXiing is the Impendance like Leo said.

OUr hospital locally is getting rid of their Ph probes and turning over to the Impendances. The vast majority of child. hosp. are doing this.

I hope the testing goes well. Here is a pic. of Jedd with his Impendance in. The PH one looks just like it. Ignore my hand in the way I was giving him a bolus feed through his G tube.

Here are the wires……and my monkey climbing around the heating unit…

Just make sure they tape that sucker really good. See the white tape above…..he also pulled it off and I had to scramble while the nurses were ocmign and put some of MY tape on it to keep it in…..

I was used to taping tubes because Jedd had had a n NG feeding tube in the apst that had to be taped down well. See, my first mistake was letting the nurese tape Jedd up and NOT helping them…LOL I knew teh BEST way to get that sucker taped down from experience…LOL

December 26, 2008 at 10:16 pm #59876

Anonymous
Inactive

The only reason i was thinking about still doing just the pH meter is because I was thinking by the time I find a new GI and get into him that it will be months. there is no impedence test in teh whole area, so i would have to find a doctor who has it. i just figured it was worth getting that information and at the same time try to find a new doctor adn test?? Is that true or am I putting him through an unnecessary procedure? I also don’t want to do that, he has been through so much already.

Also – wiht the endoscopy what worries me is that the doctor (who I don’t like) said after the test that he didn’t think it looked bad. But then the bipsy results came back and said it was esophagitis. I though he should have been able to tell that when he did the scope? the ENT we went to did a throat scope, where he jsu tlooks with him awake, and he said it was red. So is the GI just an idiot? Or do you often not know it is esophagitis until you get the biopsy reults?? Anyone know?

He also said there were 10-16 esonophiles (sp?) but they don’t diagnose esonophilic esophagitis unless there are over 20. So he was thinking possibly food allergies – so we did a dairy free diet and it didn’t work. He was on nutramigen when he was a baby, so it is really only milk or soy he could be allergic to. so when the diet didn’t work, he said acid could also be causing teh esonopile cells at that number, so that is why he thinks it is acid reflux.

I am so frustrated and confused.

December 26, 2008 at 11:11 pm #59877

Anonymous
Inactive

I’d find an out of network Dr quick……you need to find one that can tell the difference between GERD and EOS diseases. They mimic each other. Some kid sgo years with the GI they have befor emaking it to a really good one to find out their child had some type of EOS disorder.

Where are you located>>>State wise you don’t need to get exact.

There are phenominal GI programs at Boston Chidlren’s Hosapital in Boston Mass and at Nationwide Children’s Hosptial in Columbus Ohio.

We went to Nationwide and they were FANTASTIC!!!!! I can’t say great enough things about them. We spent a week there in patient for testing. We traveled from VA to OH.

Sometimes BOTH hospitals will do a check of your medical records too as well. that can catch things even if you can’t make the trip.

You may want to check ou the EOS forum at this site:

http://www.parent-2-parent.com

There are quite a few kiddos who have EOS or forms of it like EC or EG….They know ALOT more than I do.

I do know that when they are trialing foods PRIOR to the trial they must have a CLEAN scope that means ZERO EOS must be present before they are allowed a new food into their diet.

I’d join P2P and ask the same ??? you did here about the EOS count. I imagine you get a good size response.

It just sounds form your post that it is time to shop for another GI. We did and are glad for it. We found a new one here in town and of course the out of town consult as well.

If you “Mommy Radar” is going off, you need to take action. Never underestimate the Mommy instict.

ETA that your right there is NO need to do more testing for GERD unless it is going to change your course of action. I would want to get the EOS thing straighten out first before doing the PH probe. N o need to do the PH probe if EOS is the answer. KWIM. You know reflus is going on, why go through the test.

For us, we did extensive testign because we wanted to clear Jedd for agressive oral therapy for his tube dependancy. We wanted to make sure that NOTHING else was going on physically before we tried to push feeding therapy on him. KWIM

*Jessica*2008-12-26 23:13:52

December 27, 2008 at 7:40 pm #59890

Anonymous
Inactive

I am in NY – I was looking into Boston, but doesn’t it take a really long time to get in?? Is there any way to get in quickly?

December 27, 2008 at 8:49 pm #59891

Anonymous
Inactive

Gianna wrote: I am in NY – I was looking into Boston, but doesn’t it take a really long time to get in?? Is there any way to get in quickly?

BCH would be GREAT. And yes, it takes a while to get in but it will be worth it. I know lots of ladies on another board who go to BCH. They had nothign but fantastic things to say aobut the Drs there.

I know it takes forever (it seems) to get in for motility purposes but am not sure how long for Impendance studies to get done.

Personally, I’d wait it out and go to BCH.

For us it took about 2-3 months to get into Nationwide for a motiltity work up and an Impendnace study. WAY worth it IMHO.

December 28, 2008 at 12:51 am #59893

Anonymous
Inactive

the docs really can’t make a diagnosis just by looking through the scope—they make a diagnosis based on how things look at the molecular level. the doc told me things looked ok on sylvia’s scope—but that was just to the naked eye. when the biopsy reports came back it showed that her esophagus was getting ulcerated.

however, when kassie had her scope, you could see white bumps all over her esophagus with the naked eye. but, the doc could not tell if it was thrush or food allergies without the biopsy report—-they both must look similar.

i watched tianna’s scope and you really could not tell anything just by looking at the screen—-but when the doc called me with the report, he said she must have a pretty good case of reflux—–we didn’t even realize she had reflux, but it showed up on the molecular level.

December 28, 2008 at 11:16 am #59899

Anonymous
Inactive

We went to Boston. We waited 3 months for motility study, empty scan and scope. For the impendance test, we saw our local GI and we did not have to wait too long, like 3 weeks at the most.

Our experince with Boston was a good one. The test gave us peace of mind that it ruled out some serious issues that we were thinking were causing my dd reflux issues.

i would call right the way at least to find out how long you will need to wait and weather your insurance will cover it or not. You also need a referral and send your child medical records. It is a pain with all the paper work, but for us it was worth it.

good luck.

December 29, 2008 at 8:57 pm #59920

hellbennt
Keymaster

some tips/help to fight/work with insurance:

Going to the Top: https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;KW=going

December 30, 2008 at 8:39 am #59927

Anonymous
Inactive

How did the process with Boston work? they contacted me back yesterday and I am having the records faxed. At what point did they schedule you? They said the 3 doctors get back from vacation on 1/6 and they will sit down and look at his file and decide what tests they need. I am assuming it is at that poitn they schedule so they can see what tests? Did they have you there for several days?

December 30, 2008 at 1:00 pm #59932

Anonymous
Inactive

Yes, after they recieved all the medical records needed and reviewd them, they contacted me with the tests they wanted to get done and a date.

We were supposed to be there for 3 days and ended up staying 5 due to my dd spiking a fever after her scope. it urned out she picked up a virus while inpatient.

Do you know what doctor you will be seeing?

Also make sure you get the insurance coverage figured out as they were a pain about that.
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