Posted By Posting
Oct 27, 2011
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
pH probe study on older child?
My nearly 4.5 year old has gone back on his prevacid. A 3 month trial off has seemed to be a fail. Our GI doctor in the past talked about doing an endo and ph probe study on him if he doesn't tolerate being off of medications. I am a nurse and have seen babies with a pH probe. I am ok with doing and endoscopy but am very concerned about a pH probe. How in the world would my child keep that in and not go ballistic and be totally traumatized? He is developmentally appropriate and I fear he will freak out. I've had to put NG tubes down kids his age and it is not fun. I just can't see this going well. I can see him ripping it out and needed to be sedated. Is this 100 percent necessary? Is there any other way to diagnose this is truly reflux?

For background, he has been on prevacid for 4 years and has done pretty well on it. Growing, gaining weight, etc. Of course I am going to discuss my concerns with his GI doctor but we can't get in for an appointment for 2 months.

What are your thoughts? have you had an older child do a pH probe? Are there other options? Thanks in advance!

Oct 28, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Lorenzo had a pH probe when he was 3. It was both extremely valuable and extremely horrible. On the positive side, we were at a place where we were trying to determine if surgery was the direction we needed to go in, and the pH probe confirmed that surgery was not called for (he did reflux plenty, but most of it was non-acidic and none of it correlated to the things we were most concerned about). Once the probe was in, he seemed totally fine with it -- I was amazed at how little he was bothered by its presence throughout the 24 hour study.

On the negative side, the introduction of the probe was extremely traumatic, as was the removal. Although it is evidently possible to use a topical numbing agent to ease some of the discomfort (and I have heard from a few people that it is routinely used for adults), none was used for him, and I'm not sure it would have mattered -- it was the being held still while it was pushed in that freaked him out (and since I was the one holding him wrapped in a blanket, it felt pretty awful to me too). I would like to say that, once it was over, he was fine, because he appeared to be. He stopped crying, he walked out of the hospital with me, and as I said, he didn't seem at all bothered by the probe in place. Unfortunately, this all took place before we understood that he had Sensory Processing Disorder and Post Traumatic Stress Disorder from medical trauma (this pH probe was just one in a line of invasive procedures he was subjected to since birth -- some of them life saving, but still, all traumatic for him, including a horribly failed effort at a pH probe when he was 15 months old and an inexperienced nurse was tasked with the job and failed at it three times over the course of several hours). So it had a pretty extreme, long lasting effect on him. Within a couple of months, his symptoms of SPD and PTSD were so bad we though he was developing Autism. Now, all that said, it was the severity of his trauma response in this case that finally helped us to pinpoint what was going on, and the combination of those two issues proved to be what had been causing him many of the problems we had been associating with GERD (and probably also exacerbating the GERD) -- so in a sense, awful as it seemed at the time, it actually led to greater improvement in all aspects of his life than anything else ever has.

It kind of reminds me of the Buddhist story about the family whose only son found a valuable horse, which was assumed to be great luck, but then he fell off the horse and broke his leg, which was seen as bad, but then the military came conscripting all young men into battle and he did not have to go because of the broken leg, which was seen as good, and......on it goes. The idea is that we can't really ever know the difference between what is good and what is bad because life is continually unfolding. I try to remember that whenever I am face with a difficult parenting decision -- that I probably can't know if the decision I make will lead to something good or bad, because Lorenzo's life will continue to unfold with all the mystery that all of our lives unfold with.

And finally, for what it's worth, the only thing we ever found that actually eliminated Lorenzo's need for medication to reduce pain from acid (and gratefully we found it very early on) was Chinese Medicine/Acupuncture. I'm not saying it would work for everyone, but if you are feeling really concerned about invasive procedures, and you haven't already done so, maybe it's time to really explore alternatives to the traditional western approach.

I'm sorry I don't have a clearer direction to advise...we struggled with whether to do it or not too, and as I said, even now I can't really say whether it was really a good or a bad idea...

Check with your
doctor first!