I just got off the phone with the GI’s nurse and she said the results of the ph probe were normal. When I asked her what exactly that meant she seemed confused and said that it meant that he was with in the normal limits. So I asked if it meant he did not have reflux at all and she said yes. Then she asked if he was taking medication and I told her he was on 15 mg a prevacid. She said to stick with that and we would discuss it further at his follow up apt. on Sept. 5.

Now here is where I am confused. If he has no reflux any more why should he keep taking medication for it and why should we bother going back to see the GI. I would be fine with it if his apt was in a week or so, but it is a month away.

I am still concerned about the coughing and choking that he dose and the spasm thing he has been doing with his head. I wish I could discus the test result with someone who seemed to know what they were talking about. I checked the meter when he was doing the thing with his had and it said 2.1. I assumed that was the ph level which seems pretty low to me. I don’t know if they are just saying the average levels for the 21 hour period were normal or if he never had any reflux episodes at all.

She said she would fax the repot to my ped. I am not sure if he would know much about it or not. He has never taken the coughing and choking seriously. He would just say that it looked like the had a bit of a virus every time we were in for an apt. I tried explaining to him that he has sounded like that from birth, but he would just dismiss it.

May be I am just a total nut job and there is nothing wrong with my kid at all.

Katey, My DD, Zoee had a Ph probe did when she was younger. It turned up normal as well. What i was told by my Feeding specialist as well as the GI is this...The normal is the level of acid that they are refluxing. So for Zoee, it showed that she was not refluxing acid but she still was refluxing to the point that she was choking on it. Maybe this is the way it is with Sebastian. My ped is like yours and doesn't think that Scarlett(my youngest)cough is reflux either!:evil: Good luck with your appointment in September!

:hug:, Katey! Noah's results were also normal-minimal. How long did Sebastian end up being off his meds before the probe? How did Sebastian eat while the probe was in?

I wouldn't do anything at the moment. What are Sebastian's symptoms of reflux as of now? I find myself *trying* to second guess his diagnosis all the time, but all flags point to reflux. None of his doctors (including the GI that ordered the probe) will admit that Noah does not have reflux. The GI told me that is very possible to reflux below the probe, especially if the child has a history of silent reflux. Noah was also on his meds for the procedure.

Can you get into the GI any sooner?

He was off the meds for two days before the test. He did not eat as much as he normaly dose. Probalby about half the amount of solids and only four oz bottles inseatd of 6.

He mostly has the respratoy symptoms coughing, choking and he will get really rattly in his chest where you can hear him breath and feel it in there. and then he dose this Sandifer's type thing with his head. He also has episodes where he will turn read and grunt when he is eating, only with solids not with the bottle.

I just worry that I am reading too much into things and over reacting. It is just so hard to be sure.

Katey,

Sorry you didn't hear anything new, as I said before, either did we. And yes, it is frustrating to get your info from the nurse and not the doctor. If you keep insisting that something is wrong with Sebastian, then Dr. J. will do a scope. That is exactly what they did with us, but the reason I kept calling and bugging her is b/c Allie's eating just got worse and worse.

Hang in there, I'm not sure what the answer is for you. As you know, I do not like Dr. J at all and would recommend you try to get an appt with the GI docs at U of M that come to Genesys once a month if possible.

Christyn

For Daniel's ph probe, we kept him off his meds for a week, per the GI's instructions. He recorded more than 100 reflux episodes, some of which were very acidic.

I have read somewhere that even if the reflux is not acidic, the movement of food up the oesophagus can still be really uncomfortable especialy if it reaches their throat.

I feel a little better after reading this. My son has not had a Ph yet but he has had an upper GI and endoscopy that revealed no visual problems and the biopsies were normal. Yet his screaming is getting worse, can't get him to eat more than a few ounces. Use to take 8 ozs., this AM I barely got him to 5 (he wanted to stop after 3) and then he was so worked up he had a huge wet burp. But the PA is the one that told me these normal test results meant no reflux, but keep with the meds till you see the dr. My question is like yours, what for if he doesn't have reflux. So we experimented and skipped his evening Zantac dose. Poor little guy was awful, couldn't even take 2 ozs. So we ended up giving it to him, it apparently does something although it doesn't help that much more. After reviewing all the symptoms of reflux again and various other ped. GI disorders I am still convinced this is what Keegan has. So I told the PA I want to talk to the dr. before we come in next week. What is the point of me taking time off of work (again!) to drag him down there for what? He looks fine to the naked eye, the tests were just done last week, nothing was found to be wrong then but I am telling him he is getting worse. I really hope I can get him to up the Prevacid dosage to the recommended amount for his weight-age because from what I have seen on here everyone else's kid same age as mine and even younger are on much, much more. He is currently on 7.5 mg daily or 2.5ML of compound. Zantac is at max dose for age and weight, so there is no room for movement there. But from what I have seen Prevacid works better anyway.

Good luck, I share your frustation. I felt like I was crazy on Monday when the PA said he doesn't have reflux because the biopsy was fine. Then I go home and try to feed him and he screams and arches his way through the whole 6 ozs. I finally was able to get him to eat (it took an hour!) But after reviewing the symptoms again I am convinced this is what is going on which is why I said I just preferred to speak with the dr.

Katey,
I'm sorry to hear you haven't found any answers yet. I've got a feeling I'm going to be in the same position as you next week when my son has his probe too.

Do you know you're one of the first Mum's to talk about this "rattle" re: breathing. Can you describe to me what it's like in more detail. I don't know anybody's child who has this. My son basically sounds normal until you really listen to his breath in, then it sounds rattly/ husky, as if he needs to cough to clear his throat. I hear it most when he cries and when he eats he becomes more and more rattly with every mouthful. It sounds mucousy! He sometimes cough at meal times too as if he can't cope with the lumps (but he's 18 mths!!!). When he coughs he goes bright red between his eyes as if his veins are popping out!. Normally just one cough and you wonder if he is going to throw up.

When he's sleeping or just round the house you don't always hear the "rattle" (as I call it). The docs did question asthma, but it doesn't seem to fit the picture.

My gut feeling is that it must be his throat being aggravated by acid? He's had a chest infection, bronchiolitis and bronchitis in the past 18 mths too.

And of course he has very disturbed sleep. He goes back to sleep if I give him water, but then wakes again later.

Other than that though he is thriving.
What do you reckon?
Does any of it sound familiar or not?
Thanks
Love Beth

Oh I forgot to say katey, he is always his most "rattly" in the night if he wakes.

Wow Beth, that sounds so much like Sebastian. I always call it a rattle too because that is the best way to describe it. It is not like he is weezing or having a hard time breathing it just sounds rattley. Like you said it is like he has to cough or clear his throat. He also does this choking thing where he turns all red and coughs and gags.

The reason I have always thought that it was reflux related and not asthma or some other respiratory problem is that it is so random. He will be like that for an hour or two and then sounds totally normal. It usually happens several times a day. I think if it was asthma it would not come and go the way it does. Of course he never does it when we are at the drs office so he always tells me his lungs are clear and he has a bit of a cold.

Oh, he also has had a bit of a stuffy nose since he was born. At first they said it was mucus from delivery, but it never totally went away.

Please let me know what you find out from you ph probe. It is interesting that our kids have such similar symptoms.

That is amazing Katey,
I can't believe how similar they are either. You could be talking about my son! Does he ever sound hoarse? I've noticed with my son that at times when he cries at night, the breath in starts to sound really raw, almost like stridor (croup).
I know exactly what you mean about coming and going over the course of the day though. The docs too, say his chest is always clear. I'm sure all my friends think I'm nuts too, as they can never hear that famous "rattle". Definitely not a "wheeze". You start to question your own sanity don't you, then you think to yourself "I know this isn't normal". If your son vomits is it very mucousy?

They say, don't they, that the body compensates for too much acid by producing mucous. I even started wondering whther he had a malformation that was trapping liquid, food, mucous and creating that"rattle"???
Anyway, I'll let you know how we get on next week
love Beth

P.S my son was very snuffly from birth and so rattly by 4 mths that they did an xray (of course it was clear!!)

You are starting to freak me out now. He just spit up a couple hours ago and it was clear and slimy. He is not really a spitter but when he does spit up it usually has mucus in it.

He does get a little hoarse soundng at times. dh and I joke that the madder he gets the more quite he cries.

I had the pH probe done and was disappointed in results also. Minnie and I just had a long thread on the pH probe, etc. I have been stuffed up my entire life and it is just awful. I was not diagnosed with reflux/asthma until just two years ago. I'll try to find that thread and post it. I learned a lot from Minnie, it really described me.

Stephanie, I would go with my gut and keep pushing for answers.

Best wishes

Hope this helps


http://www.infantrefluxdisease.com/forums/showthread.php?p=175131#post175131

Sorry to hear how confusing that is. Like Shannon said, it could just be that the acid levels are low but that the reflux is still there. I hope you guys can get more answers with your GI!

Refluxing "within the normal limits" does not mean he does not ever reflux acid. Everyone refluxes acid everyday whether or not they realize it. Everyone is affected by it differently. What it does mean is that he does not GERD. There is a dfference between gastroesophageal reflux disease and the act of refluxing acid. He can reflux within the normal limits (under 8 percent of the day which is more episodes than you would think of as normal!) and have it still bother him, so that is why you treat him symptomatically if it works. When the ph results are so significantly abnormal, and they dont respond well to meds (the reason you do the study in the first place), then surgery is considered.

If this is an accurate result, this is good news for Sebastian. This means that his reflux is not significant in the scope of GERD (it doesnt mean it isnt significant to you or him) and that it will get better.

If he does not have allergies, the mucous is likely from refluxing. The body produces mucuos to protect itself from acid exposure. If his symptoms present his case of reflux as more significant than the probe revealed, you could consider that maybe he got a false negative--it is possible especially when not off the meds long enough and if they dont eat and drink what they normally do. His reflux may be not in the normal range based on his symptoms, and if he had been of the meds for a longer period of time it may have revealed something different. But now that it is done already, you could work with the med doses to see if you find something more effective for him.

You can still know that his reflux is not significant enough to consider surgery (which probably never occured to you) and that he does reflux and it does bother him. If the meds help him, then you keep giving it to him. If they dont help, then you should push for them to dig deeper because other things can masquerade as a reflux problem without being one.

Thanks Jean!
I was going to talk about that thread!!!! :)

Ditto ditto ditto what Carla said!!!!

I feel confident that Eric is more on the GER side of things now, and I'm happy that acid isn't the problem, but I am a bit confused.
Eric's breathing and other symptoms are helped quite a bit from taking a PPI.

Confusing as heck! I'm so tired of trying to figure out Eric's belly and other problems. UGH!

I dont know about other moms but 2 days med free seems kind of short- we had to go 5, and most docs here do 7. Ther first two nights I thought wow, this is not too bad. And then, things went downhill. Maiya refluxed 219 imes in 24 hours with episodes lasting as long as 17 minutes


I wonder, could the meds still have been in your little one's system. And if it comes up, it might not be acidic but still there. However, if the voice is hoarse, you would think it was acidic.


I am anxious to know what others think

I have read somewhere that even if the reflux is not acidic, the movement of food up the oesophagus can still be really uncomfortable especialy if it reaches their throat.

We were told this by the GI that ordered Noah's pH probe. He said that reflux can be extremely painful even if it is not acidic. Good point, Jojo!

I talk to my ped on friday (the GI nurse told me she would fax him the results) He said all they faxed him was a copy of the data from the machine and there was not report.

He was upset about the nurse telling me that it ment there was no reflux. He said the is 100% sure that Sebastain has reflux. He said the should have been off the meds for 5 to 7 days. He was hopeful that it meant that the Prevacid is working for him, however he would still like to see a report on the results. He is going to contact the GI and ask for a copy of Sebastian's initial exam and a repot on the test results.

Hang in there Katey, hopefully they'll get it all straightened out! I hope the prevacid is working for Sebastian and that you guys get the answers that you're looking for soon!

Katey,
I think your ped sounds great, so glad you have him. That is a great point that it probably means the prevacid is working for him. My daughter had her first ph study having been off prevacid and zantac for only 24 hours and the result was still severe. She still had esophagitis when they did the endoscopy that same day--this all showed the prevacid and zantac were not working (she had been on them for 9 weeks). If it barely showed any reflux, it means the prevacid works. That is a great thing! I dont know what it is with my kids...it seems like prevacid isnt really working for my son either. It helps, but is not enough. I guess my kids have more acids in their stomach than the normal child!!!!