Hi all,

I posted before because my baby (6 months) has had coffee ground spit up since 3 weeks old. For a long while they thought it was a nosebleed. It went away for 2 months. After a cold, no matter what I did, it just got worse, along with his reflux. He had reflux on his upper GI that was done at 2 months old, but was asymptomatic until these last 2 months. His edoscopy was done last week and was BAD!!! He has esophogitis and sores all in his esophagus, hence the bleeding, and a hiatal hernia. We just got the results of the PH study and it was "extremely abnormal", the worst our GI guy has ever seen. The PH score was 208 (2-10 being normal and >22 being clinical reflux). He wants to repeat the test next week, after we get off the drugs again, in case the tube was in his stomach. The only thing is that there were times that his PH was 7 something, particularly when he was sitting on the floor by himself. When he was sleeping flat, even on his stomach it would drop into the 2's for long periods.

Four questions:
1) Has anyone heard of such a high score or had a probe misplaced?

2) Where can I get research information about PH scores?

3) What can I do to keep more damage from happening while he is off the medication. His numbers dropped so much last time during sleep, I'm afraid I will have to hold him upright for 5 nights, just to protect his esophagus.

4) We nurse, almost exclusively. They wanted us to feed every 6-8 hours. That was almost impossible because breastmilk is digested so quickly. They didn't have a protocol for nursed babies. Did anyone who went through this get a protocol for nursing?

Thanks
Sarah and Michael (6 months)

We weere not given a score for our pH probe. I think that it would be easy for the probe to be misplaced. But they should have checked it with an x-ray after insertion. If it moved at all they should have been able to tell as the tubing has length markers. I know that with my daugher they rechecked placement to make sure that it was in place.

My daughter was eating and nursing and there was no problem. She also had a feeding tube. I don't think there is any way that you can wait for 6 to 8 hours between feeds. They did not tell me to do this. They told us to eat normally except for the fact that they wanted her to consume some apple juice.

If you are afraid of aspiration or breathing problems you can have your child sleep in a car seat. You can also tell doc that you need an apnea monitor. Good luck.

Laura

http://www.medtronic.com/neuro/mfd/gastro/tom_demester.pdf
My daughter has had 2 PH Probe Tests Done. I never received actual scores on her 1st one, just length of time that acid sat in her esophagus. She just recently had another Test done last friday and i am awaiting the results of that one. The above URL may be helpful. i really couldn't make that much sense of it, i hope you can. Let us know what happens.

My son has had numerous pH probes done. Depending on the doc, they determine scoring differently. Some score by the number of episodes in the 24 hours. Others score by the percentage of time the pH is <4. Others determine the severity of reflux based on prolonged reflux episodes. My son's worst pH probe showed that the pH was <4 for 74% of the time. I don't know actual numbers of episodes.

Every time he has had a pH probe, placement has been checked by x-ray and the probe was adjusted if necessary to be sure that the probe wasn't in the stomach. Then, like Laura said, they can continue to adjust the probe by looking at the measuring lines on the probe.

I can't imagine having to go 6-8 hours between feeds for a probe. The most vigorous schedule we've ever dealt with was a meal every 3-4 hours with nothing passing over the probe for about 3 hours at a time to give them a clearer picture of reflux after a feed.

I hope things go well with the next probe. You didn't mention your son's meds. If he isn't on a motility medication like Reglan, Bethanacol, or Erythromycin, you may want to ask about that after the probe.

Patti

Thanks to everyone for your input. We are repeating the pH study, just in case it is off. When the nurse removed the probe last time, it didn't appear to have moved from where she marked it when she put it in. She did adjust it after the x-ray. Maybe she put it in a little too far. I suppose we will know next week. The composite score came from 37% reflux, a 40 minute longest reflux episode, 349 episodes, and 25 episodes greater than 5 minutes. Anyway, thanks.


Sarah