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Oct 15, 2010
mrsdtek
Child Gainng weigth with GERD
Can anyone tell me if they experienced their child steadily ganging weight with GERD diagnosis? I spoke with a pediatric gastroenterologist today who essentially told me that because my daughter is gaining weight and does not have blood in her vomit or spit up that they wouldn't change the treatment she is receiving (Axid). And until she loses weight or starts bleeding from somewhere he would never give her a PPI. AHHHHHHH!!!!! I find it highly unlikely that a "healthy" adult with GERD would be denied medication or treatment because they were too heavy or weren't bleeding!!! I was so frustrated after I spoke with him I just cried because I think it is unfair that these Doctors aren't willing to help her be comfortable. I am not asking for a miracle I just want my baby to not let out blood curdling screams. I feel like I keep hitting walls with every doctor I speak to!
Oct 16, 2010
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.
My son not only gained weight in his first year, he was always in the 50-75% for weight. His GERD symptoms included spitting up, including through the sinuses, gagging and coughing while nursing, gagging and choking while sleeping, screaming and clawing at our hands, arching his back while nursing, aspiration, frequent URI's and a weakened immune system, tachycardia and SEVERE sleep disruptions. He was later diagnosed with Obstructive Sleep Apnea, and it was only then that I was informed that GERD (whether the reflux is acidic or not) can cause BOTH Obstructive and Central Sleep Apnea. In addition, I have since discovered that my son has Sensory Processing Disorder, and, while a recent pH Impedance probe showed an "acceptable" level of reflux, his particular reaction to the reflux has caused many problems, as his brain is essentially overwhelmed by each event and it sends his body into fight/flight mode so that his parasympathetic nervous system is constantly "on."

My point is simply that there are numerous other reasons, aside from weight gain, to be very concerned about GERD, and if a GI told me that s/he REFUSED to re-assess my child and consider an alternative course of action in the face of my observation that things were not going well, and would not discuss the matter to my satisfaction, I would find another GI immediately.

Oct 16, 2010
mrsdtek
Thank you. I am looking right now. I think the best part of the visit was that they told me she lets out blood curdling screams because "she isn't in that much pain, she just dosen't like the sensation of her food coming back up" Your son's symptoms sound similar to my daughters. I feel like the major reason I am being dismisses is because this is my first child...I was asked that three different times. And when I replied yes they just look at me like that is my child's problem! I'm glad I found this site so I know to be the best and most relentless advocate for my daughters health because God knows these Doctors don't seem to care.
Oct 16, 2010
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.
Do not let yourself be dismissed -- medical professionals are SERVICE PROVIDERS and you are the customer. If someone is dismissive, either find a new provider or get Mama Bear with them. You have a right to have your concerns and questions taken seriously, and you have a right to adequate care for your baby. Don't be shy of insisting on it. I learned that the hard way, allowing myself to be intimidated and humiliated out of insisting. When my son was diagnosed with sleep apnea, after months of me telling his pedi that I was observing episodes, I wanted to strangle her -- but I was really just as mad at myself for not insisting that he get the care I knew he needed....
Oct 17, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I am not a doctor and am not giving out medical advice... I am just saying that you no longer need a prescription for a PPI. They are over the counter now. You need a script if you want the pharmacy to make the PPI into a liquid for you, but you can also do that yourself. You open the capsules of Zegrid or Prevacid, mix it with water and a flavored stabalizing base which can be ordered at refluxsolutions.com.
Oct 17, 2010
jgsbennett
Ginger Bennett
Mom to Stanton - 2 year old with GERD, DGE and MPI
ourcarpetstains.blogspot.com
I have to agree with Karen here. My son has always gained weight (well he lost a lot with an aspiration pneumonia one time but I don't count that!) My former pediatrician wouldn't support the PPI idea either, so when Prevacid became over the counter, I just did it myself through MARCI.
Oct 18, 2010
dcd
I agree with Karen and Ginger. Marci-kids.com and Refluxsolutions.com have lots of great info on PPIs, if you want to explore that route yourself while waiting to get in with another GI. David at Marci-Kids has always been very helpful to me over the phone, too. My daughter is on Prevacid suspended using the Buffer Babies. We buy the 15 mg capsules over the counter, break them open, and mix them with the suspension.

I also agree with Lorenzomama - my daughter has always gained and been in the 50th percentile for weight. Even though she was constantly puking and never slept (etc!) We finally found out at 7 months that she is severely allergic to milk and corn, in combination with reflux. Since we switched her to Neocate formula she's completely stopped puking and no longer has pain with her bottles.

I too had trouble getting some doctors to take me seriously because it's my first baby, and because she never lost weight. But I knew something was wrong and I couldn't stand to see her in pain. My advice, keep fighting and find a new GI immediately.

Oct 19, 2010
mrsdtek
Thank you ladies! It amazes me that these health care providers can't wrap their minds around the fact that a first time mom could actually be right and not overreacting. Even my mother almost had a heart attack after watching her reflux and scream. She was shocked that no one was listening to me because no baby in our family has ever done anything like that!!! I am calling David today and have an appointment with a GI next Tuesday they seem through from the 20 page packet of info I have to take in and they even requested I bring soiled diapers to the appointment and be ready to spend 1.5hrs in the consult...so I am hoping she is the answer!!!
Oct 24, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
my son was born 9lbs 5oz. He is now 4 months and is 16lbs! His G.i. doctor says that he does "comfort eating" thats why he gains so much weight! All the time my friends and family are like "ohh he looks like a healthy boy" Ive had to try 3 different meds (zantac, pepcid and now prevacid) and im starting to see an improvement. His g.i. doctor did say that treatment would have been different sif he wants gaining weight, but i cant change that. I see it as a good thing that my LO is getting fat becasue that means he doesnt need an NG or a G tube.
Check with your
doctor first!