GERD: the lessons my new grandchild taught me

April 2006

After she was 1 week old, my new, otherwise normal 36¾-week gestation granddaughter started to whimper and cry sporadically (in intervals of anywhere from 1 to 10 minutes), while wrinkling her brow, arching her back and flexing her knees and hips sharply during the obvious painful episodes.

The episodes initially only lasted 45 minutes at inception, but increased rapidly to 12 hours day and night at their peak, at 2 weeks of age, and the baby required constant consoling during the painful entire episodic period, to prevent the whimpering from escalating into screaming. Painful attacks were much worse during the late evening or night. Keira, Sydney’s mom, tried, among other things, swaddling in double blankets, exclusively breast-feeding, soy formula, Alimentum, frequently burping during and after breast or bottle feeding, humming and shushing in the baby’s ear, rocking, swaying, and dancing with the baby, listening to music from a baby toy and white noise from a sleep machine. We also tried pacifiers of different shape, including Nuk (Gerber Products) and a Soothie pacifier (Children’s Medical Ventures, www.childmed.com) specially geared toward newborns, and inserting our fingers and thumbs into Sydney’s mouth upside down, for her to suck. We varied the bottles given to Sydney (with breast milk). Of course, we also attempted formula substitutions, first with soy isolate (which Sydney promptly spit out and refused to take any more), and then with hypo allergic formula (Alimentum), and a minimal avoidance diet for mom.

Of the pacifiers we tried, the best by far was the Soothie, which even comes in two different preemie sizes (for different gestational ages), a 0-3 month size and a 3+ month size, is made of silicone (not latex rubber), and for the 3+ month size has a vanilla-flavored option. Although not perfect, the Soothie pacifier and little fingers or thumbs worked somewhat, particularly when the peak of irritability passed.

Although Sydney never rejected any brand of bottle or type of nipple, we did try the Playtex Vent Aire bottle and others, which allowed for the user to manually adjust the flow from slow to medium to fast, all of which claimed they would eliminate gas and colic pain. None of these bottles had any observable benefit; instead they leaked, caused excessive bubbling of the milk at the corners of Sydney’s mouth and were messy to use. Keira preferred the Avent bottles, which were initially given to her by the maternity ward. They leaked the least and produced the least amount of bubbles of milk outside Sydney’s mouth.

Keira added rice cereal to the breast milk in a bottle. After Keira saw no noticeable change from giving the rice cereal in the bottle, it was suggested that she try giving full strength rice cereal by spoon, however Sydney was too immature to coordinate eating by spoon.

When the minimal avoidance diet did not appear to relieve any of Sydney’s pain, Keira (who was allergic to dairy as a child herself) bit the bullet and went on a severe elimination diet, including all dairy products, soy, acidic foods, tomatoes, cruciferous vegetables, onions and garlic, spices, and caffeine. (Previously, Keira drank diet sodas daily). She did not try to go on a wheat-elimination diet, which we felt would be cruel and unusual punishment at least at that time. Simethicone drops had no beneficial effect, nor did commercial gripe water made with fennel oil. I suggested the original Woodward’s Gripe Water made in England from water and dill seed oil.

Lession #1

I learned that the FDA banned dill-derived gripe water in mid-2005, and it is difficult to find in the usual pharmacies and specialty food stores. The original Woodward’s Gripe Water was available all over the United Kingdom and is available to purchase on the Internet from the United Kingdom. We ordered a few bottles. We were reluctant to purchase the Woodward’s Gripe Water that was manufactured in Pakistan or India, which was somehow available locally in south Asian food stores. We did order a few bottles of the British Woodward’s Gripe Water and we noted only a transient improvement.

Co-sleeping with her head raised on my chest seemed to work fairly well as long as my little finger was instantly available for little Sydney to suck on if she got fussy during a painful episode. Needless to say, Sydney got more sleep than I did. In the midst of all this, I suggested pharmacotherapy, starting with hyoscyamine infant drops for infant colic, a widely popular recipe before the 1980s. The theory is that wavelike pain is caused by peristaltic compression of accumulations of gas in the small intestine, and the anti-peristaltic action of the belladonna derivative would calm down the angry bowel motion. Three drops of the hyoscyamine solution, three times daily for three days, had no observable beneficial effect. We terminated that therapeutic trial after a few tries. I also suggested a therapeutic trial of 0.5 to 1.0 mL of an antacid suspension (Maalox, Novartis), washed down with a small amount of water. Most of the time, this gave immediate predictable, but not prolonged, relief from the painful episodes, which suggested that gastroesophageal reflux disease (GERD) was the likely diagnosis. I then suggested lansoprazole suspension (Prevacid, TAP Pharmaceutical Products) made up fresh from half SoluTab and some water.

Lession #2

With advice from a friendly pharmacist and pediatric gastroenterologist, I learned that it is best to put the cut and crushed SoluTab in the barrel of a 5 cc syringe and add a small amount of water to cover the SoluTab. The thick suspension is immediately given slowly in aliquots at the side of Sydney’s mouth when she was in a semi-elevated position.

Lession #3

Although lansoprazole is available as a ready-made suspension, the shelf life of this product is only 15 days and it must be refrigerated. Some pharmacies will compound the tablets from the SoluTab; this has a shelf life of 30 days.

Lession #4

Sydney did not improve much by the third day after starting the proton pump inhibitor (PPI), and I was becoming discouraged. At 18 days of age, Sydney began to spit up predictably, and it was obvious that Sydney was not a happy spitter. Also at this time, Sydney developed nasal congestion that was worse during the nights and early mornings. This was due to the irritation effects of a high acid column. Sydney also choked while drinking, had respiratory distress, and had brief cessations of breathing and mild perifacial cyanosis, which worried her mom and me.

Lession #5

I learned that PPIs often do not work well in the first week or two of therapy, and a therapeutic trial must last several weeks before calling it quits with that treatment. Additionally, PPIs should be administered twice daily, at least 15, but preferably 30, minutes before feeding in order to be maximally effective. Strictly adhering to the calculated dose by weight may be ineffective because some of the suspension sticks to the barrel of the syringe, and some more of the suspension is spit out or drools out of the baby’s mouth. When we reduced the initial dose from 7.5 mg to 4 mg, based on the dose calculated by Sydney’s weight, there was almost an immediate return of the worst of the GERD symptoms. Because the lansoprazole suspension gave no immediate relief, famotidine suspension was added to the therapeutic regimen in a dose of 0.5 mL: twice daily of a suspension containing 8 mg/mL.

Lession #6

Famotidine must be given one hour prior to or two hours after a feeding for maximal effect. It has a faster onset of action compared with lansoprazole, so it can be started together but not given at the same time. By 6 a.m., it is possible that the effects of the lansoprazole are dissipated, so a middle of the night dose of either famotidine or an antacid suspension may be helpful in the window when the PPI effectiveness is gone and it is a while before the next dose. We also tried sucralfate suspension: 0.5 to 1 mL. It was difficult to administer the thick suspension and the directions stated that it should be given on an empty stomach, one hour before a meal or two or three hours after a meal, which made it very inconvenient to administer to a newborn that was eating every few hours. Additionally, it should be noted that no antacids should be consumed within an hour of administering the sucralfate suspension. We did not find that the effects of sucralfate were any better than the antacid.

At 3 weeks of age, a pediatric radiologist performed a barium swallow by using barium followed by breast milk. A high reflux column was immediately seen reaching to the posterior oropharynx. Our diagnostic impression was confirmed, and Sydney had an appointment with a pediatric gastroenterologist to firm up the management plan.

Lession #7

GERD does not disappear with good management, but the days and nights are much better and life is far less stressful. A mid-day dose of famotidine is often still administered, as is a small dose of antacid suspension. Sydney, Keira, husband Kevin and I are much happier people.

Lession #8

GERD can really cause multigenerational stress.