PH probe

[Anonymous]

I think that there have been alot of people on here over the years that have tried erythromycin.

Could his macrocephaly be causing some of his fussiness? I would think that extra fluid surrounding the brain could leave someone with a headache alot of the time.

It IS scary when your baby gags. sylvia cannot throw up since she had her fundo. the first time she got sick and started sretcheing, I thought she was choking and it scared me to death before I figure out what was going on.

Just look at his face when he is gagging, as long as his color is good and he is making noise, he should be ok–but it definitely is scary.

[Anonymous]

I am so sorry all this had to happen with the doctor and records etc… 🙁 I think I’d be crying too.

I know I posted earlier about the probiotics and enzymes and maybe you haven’t had time to read my blog or maybe you have and are giving him probiotics and enzymes by now, or maybe you feel they wouldn’t help him. I am not trying to force you to try them and I’m certainly not saying they would cure him.

For some people when they first start taking the pills it can cause symptoms to worsen temporarily. So if you decide to try some be prepared for that. It is caused from undigested protein buildup being broken down and the probiotics killing off all the excess yeast that has taken over. Yeast and probiotics live in the same environment so when probiotics are low yeast will overgrow. 🙁

Probiotics make up 70-80% of our immunity. So when low on them we tend to get sicker more often. Antibiotics kill off probiotics so when we take antibiotics it can actually make us more prone to getting more illnesses. 🙁

My sister was diagnosed with motility problems and the doctors tried her on many kinds of drugs. One of them was erythromycin. That is an antibiotic and if I understand it correctly what it does is stimulate the stomach to cramp up more and get the food out faster. One of my sister’s biggest complaints was constant bloating. She also suffers from acid reflux and heartburn. She has been taking the Digestive Health pills for about 9 months and says that within days of starting to take them her bloating went away. The pills have by no means made all symptoms go away. But she is still taking them because they have helped her A LOT!!

I seems as if your little one could be sruggling with more than just reflux but I do think that the probiotics and enzymes would be worth trying. Just in case they would help even just a little. Happy Mom2012-08-09 16:06:14

[Anonymous]

I bet you wonderful ladies can answer this much quicker then I can find it…Laytons study “that was missing” had been mailed to me before it went missing.

What does

proximal esophageal reflux

Total perecnt: 51.4%

Is that the percentage of his reflux that reached a certain point in his esophagus?

Proudmama20122012-08-11 16:49:03

[Anonymous]

And happy mom, I did suspect small bowel bacterial overgrowth. I did purchase a digestive probiotic combo from a chiropractor and we are starting. We are scheduling the DGE now, and sounds like the erytho could be troublesome. Since starting the Peptimin Jr, he is doing better. Less volume= happy baby. But he has starting soaking diapers constantly, like 15 a day. I know thats probably a good thing, its just weird. especially since he is off the bottle now in the day time.

[Anonymous]

I can not tell you what the figures on the test meant but I’m sure one of the other moms can. 🙂

I’m glad your little guy is doing better. And hopefully the digestive pills can help even more.

That is strange about all the wet diapers. Seems though that it would be a good thing. 🙂

[Anonymous]

proximal is a location in the esophagus. it is a term they use along with distal. They say proximal reflux and distal reflux. neither of these were mentioned on sylvia’s reflux report—that I remember—but her esophagus had alot of damage. 54.1% total reflux sounds like alot—but your son showed very little damage in his esohpagus—-so I don’t know what it means.

What does the rest of the report say?

[Anonymous]

I did a little looking around, and can’t really tell what that measurement, alone, means. i think it needs to be in context with the rest of the report—then it might make a little more sense.

[Anonymous]

I think the reason the dr is saying the test is “gone”, and we should contact the hospital about refunding the money to the insurance, is because I suspect the machine was not calibrated (the time was definitely off and we had to use the time on the monitor). So, I am not even sure these values mean anything. I think we are very lucky he has had 2 negative endo’s. He has been on Nexium since 6 months old, and prior prevacid and prilosec. Because of the test she took him off the nexium. Now I wonder. His problem is more with his aspirating, choking, gagging, and maybe the motility. I do not know if I told you they had to cancel his follow up bronchoscopy the day of the procedure because of a prep issue. His bronchs showed eosinophils, lipids, and chronic inflammation in his airways.. They suggested this could be from the reflux and contributing to the worsening swallow function. Anyway, now I have the hard copy of the graphs. I can barely make out them out but what I suggested to the dr is on these. For some reason during the test, his PH was around 7 the whole time. So I think the entire test is flawed, because she said that is impossible. She said she is going to try to view it again at the hospital tomorrow (see if it magically returned). I understand why its hard for her to read this graph. Its very very unreadable. Anyway, here are some values:

Longest reflux: 25 minutes

Total
16 acid reflux
94 Weakly acid reflux
1 Non-acid reflux

All reflux 111

I think they only use the acid reflux events to figure the Demeester score, so I think its pointless, if the entire PH was off the entire study…

It was 12.8 which is normal

She is supposed to call me tomorrow. I am going to call the hospital again, as the patient relations has not called me back yet.

Thanks again.

[Anonymous]

if his ph was 7 most of the time, than that is what it should be—that is normal stomach acid. That would match with the fact that he has no esophageal damage—every baby refluxes, but not all babies have ACID reflux.

I’ve never heard of anyone getting a report that listed “weakly acid” what ph is considered weakly acid?

Was his longest reflux acid, weakly, or was it the non-acid one?

It wouldn’t be impossible for his ph to be 7 for most of the time if he doesn’t have acid reflux.

i don’t know if I can find Sylvia’s tests–but I’ll try and look when I get some time.

Is there any way that you can copy and paste the whole report on here for us? That might help.

What your doctor told you on the phone was drastically different from what you got on the report. I didn’t know a ph probe would even record a non-acid reflux.

Also, weakly acid and alkaline are kind of opposite ends of the scale–unless you are talking weakly acid or weakly alkaline.

It doesn’t look like reflux is necessarily your son’s problem.

kevieb2012-08-13 15:44:12

[Anonymous]

I got a call back from the director and she is going to get a “concrete” answer on whether or not the monitor malfunctioned.

[Anonymous]

It was actually an impedance study with PH probe also..the impedance part is a newer technology. Acid is < 4.0, Weakly acid is 4.0 to 7.0, and non-acid or alkaline is 7.0 or over. The doc said his PH should normally be between 4 and 7.0 because 7.0 is like tap water. When I say it was around 7.0 it was mostly between 7.o and 8.0 .I will scan it a little later, you cant make out the graphs. But the rest of the numbers.. His longest reflux was in the acid category..unfortunately, the report doesnt generate the values of his PH except for on the graph.. If the report is correct, I wonder about lack of enzymes and acid causing some type of carb maldigestive issue, but his GI was pretty adamant it couldn’t possibly have been from 7.0 all the way to 8.9. I feel like I am in a vicious cycle.

Proudmama20122012-08-13 16:26:23

[Anonymous]

Still going to scan his report. we had his allergy testing today, and he skin tested positive for 5 things but they wouldn’t tell me which foods! They always do, but it was lunchtime this time. Then we had to go have Ige levels drawn. I called and left a message I want to know what he skin tested positive for today, not in 2 weeks.

[Anonymous]

weren’t you watching while they did it??

[Anonymous]

I was totally watching..They had them numbered though, so when she was charting the sizes of the reactions, she had to go to another room to match them to the list of what she poked (they do the large stamps on the back). Then a different nurse came in and discharged us, and said to do the blood work and come back in 2 weeks. When they called back last night they were very rude. She ordered almond, fish, egg, milk, and a fruit panel ige levels. Going to go down and request the medical record. I feel like I am in the twilight zone. I am due to start an internship in a couple weeks, and I feel like dealing with the dr.’s is already full time work.

[Anonymous]

what a weird office–i think when they keep switching rooms and people on you–especially during one appointment–it UPS the chances of getting things lost or confused. hope it all workds out. can’t believe they’d let you walk out of there without telling you the things that were obvious that he reacted to–like they didn’t think you’d want to start avoiding them as soon as possible?????

We live in a prety small town in southern idaho–but we have been prettty fortunate in that we have a pretty good allergist who comes to our town several days a week from a larger town. He is the one who helped me when I first suspected celiac disease.

He also told me what they would normally do when I told him how many eosinophils I had when i had My last scope done—I’m not sure the surgeon even knew what eosinophils were.

Just remember, as young as your son is, allergy testing isn’t always accurate—and on a more positive note—I think that kids can outgrow certain allergies–and, if they start allergie shots at a younger age, they do alot better—at least I have been told that about environmental allergies.

The allergist does not expect my son to have allergies when he gets older—and tested sensitive to a lot of environmental things. he had shots for awhile, but i can’t afford them anymore–the shots are cheaper than my co-pay!!! I could buy the vial for his shots if i had a registered nurse that would give them to him for me. They won’t let me give him the shots.

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