Basically, Dr. Christine D. Graham isn’t comfortable providing more than 1.1mg/kg of medicine. After trying that dosage amount and realizing it wasn’t controlling reflux symptoms, we went “rogue” and just dosed the proper amount (1.25 mg/kg) from the compounded prescription we have.
Our prescription says right on the bottle “most insurance will allow refills on __/__/__” (which was around 24 days) and we had no problem refilling it. Whenever we need a new prescription (doctor only provides 2 months at a time), we just call the doctors office about a week before we run out and they phone a refill to the pharmacy. Or, if we need to weight adjust, we go in about a week before we run out and get a new dosage amount and they phone the new prescription to the pharmacy… She STILL doesn’t prescribe the correct amount, but we were able to get her to prescribe almost enough (she gave us 3.3ml x 3 daily, and she needs 4ml x 3 daily). We give her the amount she needs and just refill the prescription about 5 days early.”
Betsy F., Facebook July 2017
Dr Tamara Alvarad- Feliciano with Pittsburgh Children’s Hospital, Pittsburgh, PA
Initially she was helpful and willing to increase meds to 3x a day because we said it was working. However, she now wants to decrease to 2x per day and NOT willing to increase dosage even though my baby has gained weight and I’ve explained that proper dosing has helped my baby eat again. I talked to her about proper dosing and even sent her all the research but she still has immediately shut me down and said absolutely not. She refuses to increase.
So, I would not recommend her since she is unwilling to increase despite the significant change in my baby since proper dosing. Renee M., June 2017 Facebook
I do not recommend this doctor for a gerdling. He will not properly dose and made it clear if I didn’t stop home compounding he would wash his hands of us. He also pushes erythromycin. Erica F., June 2017 Facebook
Adult, not Pediatric Certified Nurse Practitioner
I do not recommend for a gerdling. Simona may be ok for an adult PCP but they will not deal with any of her GI issues and are not interested in learning about marci dosing. They state it is something they grow out of. Erica F., June 2017 Facebook
Dr. Steven L. Singer
I highly recommend him as an ENT doctor. He is very knowledgeable about reflux and latest studies including Marci dosage. He performed a scope on my son and has been pushing the GI to treat reflux properly as well take action requesting the right tests to find the root cause of his reflux.
He also encourages dairy/soy free diet and several flushes of saline per day to avoid ear infection on reflux babies.
He is very proactive, explains everything into detail and listens to all the concerns carefully. Mariana V., June 2017 Facebook.
…after going daily to drs office and seeing different drs we finally saw one that would proper dose my Emily. He said he was familiar with proper dosing because he had two babies with acid reflex. I’m sooooo glad a dr finally listened and didn’t treat me like I’m crazy. I’ll also add that we had issues with insurance covering extra bottles per month and dr called insurance himself to push it through. Karina R. June 2017 Facebook
“Dr. Christine Karwowski at Johns Hopkins in Baltimore, Md- she’s amazing. Listens well, easy to get an appointment with and very proactive. I definitely recommend her! We were already doing Marci dosing with otc Nexium and she had no issue with it.” [so perhaps go into the appointment already on proper dosing via ped, etc.] Christa B., Facebook
Dr. Whiting at Alpine Pediatrics in Lehi, UT is on board to prescribe Zegerid, and supportive of home compounding.
Nikki H., Facebook.
[In 1990, he received his Certification in the Sub-Board of Pediatric Gastroenterology, Hepatology and Nutrition and has held this certification continually since then.]
Dr Kevin Kelly. Pediatric Specialty Care in Willow Grove, Pa.. We really like him. He has no issues with increasing ppi doses to what they should be and didn’t bat an eye when I asked if he was ok with us dosing twice daily. He told us that there aren’t any harmful side effects of PPIs and he was fine with that. He’s extremely nice and very down to earth Posted by Kathleen L., Facebook
My daughter’s pediatrician, Dr. Schwartz supports my plan and MARCI dosing. She is now pain free and a happy little baby! Karen B., Facebook
Dr. Alka Goyal does not believe GERD can cause a baby excruciating pain. She believes a baby screaming and crying is just a baby with colic. She also had no definition for colic. She does not believe in medicating a baby and also does not support MARCI dosing. Her so called exam was very rushed, she did not listen at all, and she avoiding answering any questions. She asked if I was a first time mom and explained that all babies are fussy. I told her I know the difference between a fussy baby and a baby in pain her answer was “she is not in pain she has colic.” Her recommendation was for me to feed my 7wk old no more than every 3 hours and suggested to just let her lay there and cry if she’s hungry. The appointment concluded with the Doctor sending her Aide in with a piece of paper describing what GERD is very vaguely. I will never take my daughter to this doctor again and I definitely will not let my baby lay there and cry. Karen B., Facebook November 2015 (when this dr was in Pittsburgh)
Otolaryngology (ENT), Pediatrics
Our daughter also sees a pediatric ENT at OHSU/Doernbechers for her laryngomalacia, Monica Desphande, who is also great. But again, same story there, she is a NP as the wait to see the MDs was quite long. But we really like her.
[not sure about proper PPI dosing as this mother did not go that route; impressive background, though, so perhaps open to reading the research?]
Dr. Gerwein is completely receptive to our description of our 19 day old son’s symptoms as being the signs of reflux. Dr. Gerwein supports our attempts while breastfeeding to attempt the total elimination diet (TED), as well as speaking openly and honestly with us about the lack of data supporting or refuting relief being made available with either a 15 degree or 30 degree incline where baby naps or sleeps. Dr. Gerwein supports the parents trying positioning to try to alleviate baby’s discomfort, but is responsible in her duties to review the data that is available about SIDS and reminds us to attempt sleeping on the back whenever possible. Without even prompting Dr. Gerwein, she offered a prescription for Zantac with the dosages that would have been prescribed by a G.I. doctor. We feel completely understood and taken care of by our physician. We will not fill the prescription until our son’s symptoms worsen; for now, we are hopeful that TED and positioning will provide enough relief. Imber A., November 2015, Facebook
I highly recommend Dr Davies. She keeps your file on her desk and will call you everyday to check on your child until we’ve found a resolution. She literally changed my daughters life, and frankly our lives too, for the better. She’s a great dr, great bedside manner, and she’s currently bringing another GI specialist into her practice.
Lindsay M., Facebook, November 2015
Dr Hussein with Spokane valley ent. He’s the best in Spokane for tongue tie. He answers questions, is super kind, makes trips to the hospital for babies in the nicu who need their tongues clipped. He takes care of the more difficult ties and is especially the best for posterior tongue tie. He is the first dr that all the lactation nurses in our area refer to. He did a ‘quick scope’ and I like his personality! Posted by Janelle K., February 2017 Facebook
My son started seeing Dr Dezenberg around 4 months old. Initially he seemed to be concerned and ready to help (at that point my son was screaming for hours each day even with omeprezole and was losing weight). However, as my time has gone on and my son has not followed the path the dr expected him to, he seemed to give up. He was difficult to get responses from and routinely said he didn’t know what was going on with my son and thought it was weird, but that he would just grow out of it. My son’s intake grew so poor that he was prescribed an Ng tube. He was unable to tolerate the tube feeds (placed by a home care nurse and checked with an X-ray at the hospital for placement). I was told to call the dr right away in the morning as no one had ever seen such an immediate reaction to a tube feed. I called Tuesday and didn’t get a message back until the end of the week from a nurse. Then my son was scheduled for a scope even though the dr had still not talked to us. The dr showed up 45 minutes late to the scope, and told us he didn’t know about it (meanwhile the anesthesiologist was visibly angry which made us super uncomfortable to hand our baby off to those two). Two days after the scope the dr called and asked how our son was breathing, because some of the biopsies went too deep. He didn’t even tell us while we were at the hospital. Since then we have seen speech therapy for a swallow study, an ent who used a camera to look at my son’s esophagus, a dietician, and the pediatrician. All agree that more is needed to be done and something isn’t right. The Gi seemed offended that I gave him information from those doctors. I’ve asked him about lab work that has been off and he says he doesn’t really think it means anything, without giving an explanation. He also continues to say that it “can’t be certain things, because they are too rare (despite the fact that the ENT said what he saw is rare and a definite cause for concern).” He only agreed to write us a referral to Seattle Children’s (as the dietician had recommended) after I wrote an email saying how it seems that he and his practice does not listen and I worry about the standard of care. Posted by Lea P. Feb 2016
We just went to see Dr. Dumont out of Easter seals in Villa Park as well as the Raby institute in Chicago and he is amazing! He comes highly recommended by my sons speech therapist and dietician….he really hears you out and is very well versed in alternative medicine as well…I’m not sure about his standing on ppi’s, as he determined my son probably doesn’t have reflux at all and is focusing on minor motility issues..posted to Facebook november 2015 by Mehmooda A.
I can’t recommend my GI, but o would like to put in a shout out for my pediatrician. He doesn’t dose at the MARCI level, but he is more aggressive than the GIs we’ve been dealing with and very understanding of how difficult a reflux baby is. He has been very available and great throughout. His name is Dr. Raoul Sanchez he is with the Carithers Pediatric Group in Jacksonville Florida.
Dr. John Alberty with OLOL in Baton Rouge, LA. He is our pediatric GI while I don’t agree with everything he says to us he is open minded and willing to work with me to treat our son’s reflux. He is not one to push meds but tries to find underlying problem. I would definitely recommend if you need GI doctor in this area- posted to Facebook November 2015 by Becky M
…scheduled me with Janice Tendler, pediatric GI NP. She is fantastic!!! She listened to me, got tears in her eyes with me, spent over 1.5 hours with me and my daughter, got a speech pathologist consult to happen that same visit, and followed up with me. And, we have another follow up Thursday. Have we solved the problem yet? Of course not. But we’re trying and I finally have someone in my court who cares and listens and is willing to try different things to help us. She’s advocating on our behalf to get my daughter accepted as a patient into OHSUs GAD department, which specializes in ENT/GI combination issues, housing all the doctors in one spot. I’ll follow up with more info as we go through this..
We have/are seen/seeing two pediatric GI nurse practitioners at OHSU Doernbecher Children’s Hospital in Portland, OR. Seeing the NP, as the wait to see the MDs was months and I sometimes think you get better care with the NPs. The first NP we saw, Suzanne Kavet. She was TERRIBLE. My husband and I came in with tears in our eyes, saying we’ve tried nearly everything to help her for months and are desperate. Her response was “have you ever tried putting her in the stroller and taking get outside for a walk to distract her?” Um yes, that and a million other things. She had absolutely no bedside manner. Totally dismissed everything. I had to demand an upper GI. I thought about it all night and my anger grew. So I called back the next day and demanded a new NP or MD. – posted in November 2015 by Lauri H