Posted By Posting
Jun 15, 2011
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
Update on "PH Probe and Redo Endoscopy"
I would like to give an update of our 2nd opinions. First, we saw our peditrician and he agreed with me that it's not necessary to redo scope and PH study for now. He supported me in continuing with Nexium and try to wean him down to 1/2 packet and then stay there for a while. Then last week we saw another GI doctor and he said that he is concerned with Gastric Delayed Emptying and possibly allergy since Matthew's eosinophiles in the blood test was higher than usual. He think it's important to make sure we are treating the right condition whether it's reflux or Delayed Emptying or allergy. He recommends doing a scope and more importantly doing PH study with the Bravo capsule instead of the catheter one, and then possibly a food emptying test. He saids we just need to stop Nexium 3 days before scoping and the PH capsule will be in his esophagus for 2 days with a small monitor device that he can wear around his waist. It seems the Bravo capsule PH technology is less invasive and brings good results. My gut feeling is that it's reflux and not Delayed Emptying nor allergy. We had been with an allergist and tested negative with all common allergents in blood test as well as skin prick test. When Matthew was infant, I troduced new food slowly with 1 food at a time to make sure we catch allergy symptom and I never saw any change in him at all. He had been on dairy free diet for 1 month and nothing changed either. My husband said let's do it but I am not sure it's worth it for him to go through all the scope, anesthesia, capsule probe, etc. Have any of you done the Bravo capsule probe before and how was it? Did it give a good result in term of determing acid reflux? Also is the food emptying test a reliable test to find out that condition? I wonder why can't we do that test first before doing any scopy and PH study. Thank you very much for your feedback and any thoughts. Cristina - I wonder if you got my email las time. I just resent my email to your email address. Hopefully it reaches you ok. ------------------------------------------------------------------- Hello - I haven't came back on this forum for a while. It's been a difficul time for us. My son, Matthew was diagnosed with Autism last summer and we have had a lot going on, more intensed therapy time and other issues to deal with. He has been doing very well in term of reflux, no more throwing up except when sick and eating and sleeping well. In Jan, our GI pressured me to wean him off Nexium and things started to get worse. I saw more tantrum at home and meltdown at school. A lot of burping, hiccup and sleeping issues. He tossed and turned a lot and woke up tired in the morning. He said several time "ouchy. Tummy hurt." after eating sour yogurt or sour juice. I brought him back to see GI doctor and she said that she recommended to redo scope, which we did in Sep 2009 with normal result, plus PH Probe study. We haven't done PH study yet. Without the scope and PH Probe's definite result that he refluxes, she can't continue to prescribe Nexium because PPI comes with side effect which is decreased absorbtion of calcium and magnesium. Btw, we just recently did blood test ordered by the GI for level of calcium, magnesium, etc. and the result came back within normal range. I give Matthew vitamin and mineral and probiotics supplements daily. He has been on Nexium for 2yrs 4mos now and had tried other meds Zantac, Prevacid, Omeprazole since he was 2 mos or so. She wanted us discontinue Nexium and switch to Zantac 3ml twice/day for a month and stop all med 3 days prior to the Scope and PH study. I'm terrified at the idea. He's already not doing well on Nexium wean, how can we possibly switch to Zantac without causing him more pain. Matthew is very sensitive and has sensory issues. It would be very hard for him to tolerate the Probe for 24hrs. Can I ask you ladies for your advice? Is the PH study a good test and necessary to diagnose GERD in kids? Have any of you tried PH Probe and how did it go? What other options do I have at this point? Should I seek for a 2nd opinion? I have a strong feeling that his behavior and tantrum are due to reflux pain but I can't prove it. It's heart breaking to me that I have to let him suffer for a month and get his esophagus inflamed so it shows on the scope and hopefully the PH study can prove it to the GI. Thank you so much for any feedback or advice you can give me.
Jun 15, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
possibly allergy since Matthew's eosinophiles in the blood test was higher than usual

This really sticks out to me. Let me talk to some of my EE Mommas and see what they have to say about testing EOS in bloodstreams. They all got their DX from an EDG so, I need to ask someone who's walked that road.

I do know that altered diets and skew the results of an EDG if you are looking at getting a DX of something like EE. It can give you a "clean" scope when in reality it was only "clean" because you were limiting the diet prior to the scope.

Let me get back to you.

GES are notoriiously unreliable, I'd to ahead and do one though, they are VERY non invasive. The problem with them is the fact that motility can change from hour to hour with some of these kids so, it's hard to tell. Jedd has had 2 good GES and his A an D man, test through his G tube showed mild slowing, go figure. The A and D man, is *the* gold standard for DGE though. If it says you have slower than normal motility you *have* slower than normal motility.

Most regular GIs will just RX the meds and if you see a lessening of symptoms, then they will continue with that course of treatment.

Jun 15, 2011
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
Thanks for your insight Jessica. When we did the scope in Sep 2009, Matthew was exposed to various types of food (dairy, wheat, oat, egg, veggie, meat, nuts, etc.) and it came out negative for EE at that point. But he was on Nexium so there's no inflamation on the esophagus. The 1st GI didn't even mention the high EOS result on the blood test, but the 2nd GI was concerned. He asked if Matthew was sick on that day of the blood test and I said he was well on that day but he had been sick a week before that. I look forward to any info from you or other moms on the high EOS and EE. Thanks a lot again.
Jun 16, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
OK, they have told me that EOS on the blood stream is a sign of allergies. Did you do any foods with that allergy testing you did?

There are other ladies that know much more about food allergies than I do.....just warning you...LOL

Jun 17, 2011
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
Matthew hasn't had any new food for a long time...I definitely bring it up the EOS issue at the upcoming appointment. We're going to see another pediatrician next week. Thanks Jessica.
Check with your
doctor first!