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Jun 04, 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.
PH Probe and Redo Endoscopy
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 04, 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
I think you need a second opinion. There's no way I would do a scope just to prove a child needed a med. If they do the med and it works, that is proof enough with out going under G.A. to do it.

Jedd was on prilosec for about 2.5 years with no issues. His labs always looked fine. We weaned to Axid and he is showing issues again now at 4.5 years and we are getting ready to trial Prevacid.

Our GI has NO concerns what so ever of the issues you are being told by your GI. Long term to me means way longer than just a handful of years. Long term to me would be 10+ years. I think you have WAY longer to go before you can feel afraid about those issues.

I don't think I'd hang everything on a PH probe either. Maybe an Impendance probe where they can tell the difference between acidic and non acidic reflux. Many hospitals are phasing out the PH probes and going to Impendance probes.

Jun 05, 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.
I agree with Jessica wholeheartedly on getting a second opinion. I would also, based on my own experience, proceed with caution when it comes to a pH probe with a child who has sensory issues/autism. We had a pH Impedance probe done on Lorenzo when he was 3 years old, and while I'm not sorry we did it in the sense that it helped us understand the role of reflux in his life, it turned out to have exacerbated his Post Traumatic Stress Disorder (which we did not know, at the time, he had). It turns out, and it makes complete sense to me now that I know, that children with sensory issues are very susceptible to PTSD because things like invasive medical procedures, and even things like reflux itself (which was the case with Lorenzo), can feel like life threatening events -- and with no means of carrying out the fight/flight response that that initiates, they are left with a neurological imprint of trauma which can easily become PTSD. (If you are interested in learning more, I highly recommend "Trauma Through A Child's Eyes" by Peter A Levine and Maggie Kline).

I am not suggesting that you scrap the idea of a probe altogether, but I strongly encourage you to explore the potential ramifications of doing it on a child with sensory challenges before you undertake it. I'd be happy to talk with you more about it, and/or our experiences with both the probe and PTSD if you like. (Lorenzo was also on his way to an autism diagnosis -- in his case, it appears that what looked like autism was actually an extreme stress response, as things improved immensely as soon as we began addressing the SPD and PTSD together. )

Jun 06, 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.
Thank you so much Jessica and Lorenzomama for your insight and sharing your experiences. I will definitely call other GI on Mon and also call our peditrician to get appointments for 2nd opinion. Dear Lorenzomom, I'm very interested in understanding more about PTSD, your experience with the probe and how to address the sensory issues. Matthew is very sensitive since birth. Things such as illnesses, reflux, teething have been major stressors and seemed to be traumatic for him each single time. When he's well and has no illness or physical pain, he seems to be much more social, easy going and just like a different child. I wonder what is the best way to contact you. I can either email or call you. My email is heleplai@gmail.com. Thanks much again for support ladies.
Jun 08, 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.
I tried the email you listed but it didn't go through. We are all sick with the flu this week and dealing with a recent tragedy, but if you email me at cristina@mothersupportnetwork.com I will get back to you as soon as I can.
Check with your
doctor first!