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Learning from My Experiences: How You Can Help Your Baby

The internet has been a huge help to me as I have struggled to help my daughter. Both in the initial period of diagnosis, and in the months and years that have followed. When she was two months old and her behavior was still being dismissed as colic, I got on-line and found a list of symptoms that matched. I returned to the Ped the next day and said, "Could it possibly be silent reflux?" The doctor, one I had not seen before in that practice, said it might be and prescribed Zantac. Unfortunately it was too late. She was admitted to the hospital a few days later and came home a week later with a feeding tube in her nose. It is my wish to help other parents in the diagnosis and treatment of their babies with reflux, so that you may arm yourself with information to present to your child's doctor. If even one baby is helped, then Nitara's struggles will have counted for something.

The contents of this page should never take the place of medical advice or treatment. This is just for general information, based on my experience.

Symptoms of Infant Reflux:

I was once told by someone on-line, "Reflux is just a laundry problem." Yes, in most cases it is just a laundry problem. If the baby continues to eat and put on weight and is happy, then there's not a problem. They will probably outgrow it. But for some infants it can be very serious. Reflux does not always mean spitting up or vomiting, either. For the first three months of Nitara's life she had mostly silent reflux. She only spit up a little bit, and only vomited if I tried a new formula that didn't agree with her, in my desperate attempt to find something she could digest.

Some of the most common symptoms are:

back arching, head turned to one side during or after feedings
coughing
stuffy nose, esp. in the mornings
ear infections
bad breath or sour breath
acid diaper rash with bm's
gurgly, wet voice
hiccups or wet burps
poor sleeping
drinking frequently or not drinking enough
slow growth
"concerned" look on the face
spitting up bits of blood (brown or red) or yellow bile
gagging during the eating of solid foods
overeating (the act of swallowing milk may relieve the burning for awhile but eventually a full stomach will cause more reflux to happen)
undereating (the baby may hurt so much that it will avoid swallowing at all. Nitara was taking 12-15 oz on average per day. If you suspect undereating and you are breast-feeding, rent a babyscale and weigh your baby before and after each feeding to see exactly how much they are eating over a few days).

Kellymom Infant Reflux page, for breast-feeding mothers

Ways to Relieve the Pain of Mild to Moderate Reflux

Avoid curling the baby's body, which puts pressure on the stomach. This includes cradling in your arm, putting the baby in an infant carseat, or wearing the baby in a sling in the "cradle" position. Instead, get a convertible seat once the baby can hold its head up well, wear the baby in a front carrier such as Snugli or Baby Bjorn, and hold the baby so that the stomach is not compressed.
Elevate the sleeping surface. You can buy commercial wedges but they are expensive. If the baby is sleeping in your bed, elevate the bed by putting bricks under the feet (and make sure the baby won't slide down under the blankets at night-- best to have separate blankets for you and your partner and none for the baby). If the baby is in a crib or cosleeper, elevate the feet, or what I found extremely effective, put one or two adult pillows under the crib mattress to elevate one end.
Feed the baby smaller, more frequent meals rather than larger, spaced out meals. For breastfed babies this means let baby empty one breast only, and then wait 30 minutes and nurse on the other breast. Do not limit the total intake over the course of the day, just try to prevent baby from getting a full stomach. You might want to rent a baby scale for a few days to make sure baby is getting enough. (A newborn will take about 24-28 oz of milk, up to 32 oz per day until the baby is ready to start solids. If the baby is taking in huge amounts like 48 oz per day that could indicate overfeeding to soothe reflux-- or it could just mean a very hungry baby!)
Avoid spicy foods in your diet if you are breastfeeding, as well as chocolate and other foods that cause heartburn. It will come through in your milk. If baby is showing signs of allergies such as skin rashes or diaper rashes around the anus, consider an allergy elimination diet.
If the baby is having trouble sleeping, give 1/4 (under 3 mos old) to 1/2 (over 3 mos old) teaspoon Mylanta 4x a day by syringe. If that helps the baby to feel better and act better, consider asking for a prescription for Zantac. There are other meds that are stronger if Zantac doesn't work (such as Prilosec or Prevacid). Do not use Mylanta long-term, but it's okay for a few weeks. There is no cure for reflux but some meds do help to reduce the pain of heartburn and prevent esophageal irritation and ulcers.
Give a pacifier or encourage thumb sucking. Non-nutritive sucking will help tremendously with reflux, especially during sleeping.

Signs Your Baby Has Severe Reflux and Needs Immediate Help

I cannot stress enough how important it is to get immediate help. Reflux can kill. It can also hurt your baby's health and development. Nitara's reflux and eating problems didn't have to get as bad as they got if only her pediatrician had taken me seriously. If you think your baby has severe reflux and the above techniques do not help, please, please, please get a 2nd opinion. And a 3rd one. Take your baby to ER. Do whatever you have to do in order to get your baby the help it needs before the reflux causes more problems.

Baby is generally unhappy. Periods of screaming for hours on end. Unlike colic, it does not happen at predictable periods of the day.
Baby does not want to be held. Baby appears to be stiff and uncomfortable when held.
Frequent choking or coughing during and after feedings. This could also indicate a swallow dysfunction so be sure to bring this to the ped's attention.
Periods of apnea or turning blue from aspirating the reflux.
Baby loses weight or does not grow fast enough. Loss of body fat observed.
If the head stops growing in relation to the rest of the body.
Baby appears to be dehydrated, constipated, and does not produce enough wet diapers.

Diagnostic Tests for Reflux

My advice is to treat the reflux with meds first and see if it gets better, except in cases where the baby is choking and having blue periods. Then you need to get testing done right away.

24 hour pH probe. The baby is admitted to the hospital for 24 hours and a tube is run down their nose and down their esophagus. It measures reflux episodes and acidity.
Gastric Empty Scan. The baby is given a radioactive substance in milk, and then is observed under an xray type machine. The machine can measure how fast the stomach empties (some reflux babies have delayed gastric emptying) and can sometimes detect periods of reflux.
Swallow Study: The baby is given barium in a bottle and will swallow it in front of an xray machine to see if the baby can swallow normally or if there is a problem with the swallowing function.

Meds

Mylanta, for short term or occasional use
Zantac, the first acid reducer that is usually given. Takes several days to work.
Tagament, slightly stronger than Zantac
Prilosec/Prevacid, the strongest meds for acid reduction
Carafate, helps heal esophageal damage

There are others, but these are the most common

Feeding and Occupational Therapy

A baby whose reflux was untreated for too long, or who was treated but still continued to struggle, will almost always develop feeding aversions and sensory issues. My first child also struggled with reflux but not to the same degree as Nitara. And yet she developed some eating problems that lasted well into her 3's. I wish I had known about FT and OT for her. For nursing problems, first consult a good Lactation Consultant to rule out latch problems caused by tongue tie or poor suck coordination not related to reflux. For solid feeding problems, if you live in the United States you can call your state's 0-3 special needs program. It has different names in different states. Call your local school district office, or ask for the information from the pediatrician. The evaluation will take place in your home and is free. If the child qualifies for therapy, that will also be free. Your insurance may cover feeding therapy. In order to qualify for state services you may need a letter from your insurance stating that therapy has been denied.

Signs of feeding problems with nursing/bottlefeeding infants

Nursing or bottlefeeding very small amounts, about 2.5 oz typically and resulting in slow growth
Arching back during feedings
Resisting nursing or bottlefeeding during waking periods, and only feeding when drowsy or sleeping
Only feeding in a bouncy seat or on the bed, and not in the mother's arms.
Milk dripping or pouring out of the edges of the mouth during feedings (check for latch problems)
Clicking sounds during feeding (also check for tongue tie)

Signs of feeding problems with solid food

resistance to eating at all
gagging with smells of food, even the sight of food
gagging when food is placed on the tongue
subsequent vomiting
choking when attempting to swallow
refusal to touch foods
no interest grabbing foods off the plates of the parents

Note: some breastfed infants are simply not ready to start foods until they are older. That is fine and normal as long as they continue to grow and thrive. If you have concerns about your otherwise normal infant not eating solid foods, call La Leche League. They can give you some good resources to reassure you that your baby is fine. If your baby wants to eat but can't, or is beyond the age of about 12 months and still not eating at all or showing any interest in food, it might be time to request an evaluation from a feeding therapist.

Please see my feeding therapy tips coming soon!

Surgery: The Case Against Routine Nissen Fundoplication
(and special circumstances when it might save your child's life)

Unfortunately there is no cure for reflux. The best you can do is manage it with meds and hope they outgrow it. There is also a surgery that can be done to prevent reflux in some children. In the past it was very popular to do this surgery. It is, in fact, the third most common pediatric surgery in this country. It was at one time considered a cure-all for reflux. Now doctors are thinking twice about it. If your child's doctor has recommended this surgery for your child, please do your homework!

This is a picture of the surgery. It basically wraps the stomach around the esophagus to create a one-way valve that prevents vomiting or reflux from happening.

As many as 15% of children who have a fundoplication will develop an intestinal obstruction from scar formation or adhesions, although this may be less frequent after a laparoscopic fundoplication. After a successful Nissen fundoplication, a child will not be able to burp or vomit. The inability to burp can cause a problem called gas-bloat where the stomach fills with air that can't be easily expelled. For this reason, we may place a gastrostomy at the time of the fundoplication in young children, even if they are able to eat by mouth. Since children are no longer able to vomit after a Nissen fundoplication, they may have episodes of wretching when they have a reason to vomit--such as the stomach flu. When there is not a gastrostomy tube, the contents of the stomach will usually eventually pass into the intestine in this situation, although some children may need to be brought to the emergency room for placement of a tube in the stomach through the mouth. (source http://www.llu.edu/lluch/pedsurg/gereflux.html)

As you can see from the illustration, a fundo makes the stomach smaller. This means that your child will not be able to eat as much in one sitting and may have a decrease in appetite.

Another picture showing the vagus nerve, which can become damaged for life. One of the risks of the fundo. If it becomes damaged the stomach can no longer contract and empty food into the small intestine, thus requiring slow, continuous tube-feeds through the small intestine for the rest of the person's life. I personally know the parents of such children on-line.

My daughter was a proflic vomiter. I changed her outfits so many times a day, washed her bouncy seat liner and carseat more times than I can count. She basically ruined our carpet. It was so stained and smelly that we had all the carpeting in our home ripped out and replaced with tile so we could clean up her vomit more easily. Just recently, she projectile vomited 6 oz onto the floor because she has a stomach virus. However I'm glad she was able to vomit and release that stuff from her stomach and feel better. One thing she couldn't do if she had the fundo.

Surgical Procedure to Treat GERD in Children Found to be Ineffective
Bethesda, Maryland (Nov. 1, 2004) – According to a study published in the American Gastroenterological Association (AGA) journal Clinical Gastroenterology and Hepatology, more than 60 percent of the children who received surgical fundoplication to control gastroesophageal reflux disease (GERD) had recurring symptoms of the disease months following surgery. The procedure is the third most common major surgical procedure performed in children. Overall, fundoplication as a treatment for GERD in children needs further evaluation. "Fundoplication is not a long-term solution for children with GERD, whether or not they have medical conditions that predispose them to the disease," said Hashem El-Serag, MD, MPH, senior study author.

and . . .

Certain Drugs Found as Effective as Surgery for Management of GERD

The report finds that for the majority of patients with uncomplicated GERD, a class of drugs called proton pump inhibitors (PPIs) can be as effective as surgery in relieving the symptoms and improving quality of life. At the same time, although the surgery is sometimes chosen with the goal of removing the need to take medications, the evidence is unclear as to whether a significant number of surgical patients eventually become freed of the use of medications. In the studies reviewed for today's report, 10 percent to 65 percent of patients resumed the use of medications.

A fundoplication might be necessary and even life-saving if:

your child has severe aspiration problems, resulting in periods of not breathing, or frequent pneumonia
your child's reflux is not being controlled well by meds and they are showing signs of irritation or inflammation of the esophagus in spite of taking meds. This can eventually lead to severel ulcers and even cancer.

In these cases, do not hesitate to do whatever you need to do in order to save your child's life or quality of life.

Nitara may never outgrow her reflux. She's two years old and still needs an adult dosage of Prilosec every day to remain comfortable. But so far the meds are working for her. If she gets tired of the reflux and wishes to have this surgery, we will leave that decision up to her when she's old enough to make it on her own. By then there may be a better surgical technique or better meds for stopping reflux.

The Mixed Blessings of an NG tube

If your baby is losing weight and not eating, it will most likely be given an NG tube to help gain weight again while they figure out the best treatment options. The NG tube saved my daughter's life. However it was a mixed blessing. NG tubes are supposed to be temporary. They are not meant to be used for weeks or months and here's why:

The baby can feel the NG tube going down the back of the throat. The baby may not want to swallow with the NG in place. It can therefore, make the baby even more reistant to eating by mouth.
The NG tube can make reflux worse. There is a valve on the top of the stomach that will close to prevent food from coming back up. This valve is already weak in a refluxer. When the NG tube is in place, the valve can no longer close fully and food will come back up.
The NG tube can cause sensory issues to become worse. Think about it. Tape all over your cheek, a tube down your nose that you can feel at the back of your throat.
A baby can become dependant on an NG tube and not want to eat by mouth. Tube-feeding is much easier, especially for a baby who doesn't want to eat in the first place.

The Benefits of a G-Tube

Asking for a g-tube was the best thing I have ever done for my daughter. I never thought I'd say that when I was pregnant with her! No parent ever wants their child to have a stomach tube. If your child is going to be on an NG tube for more than a few weeks, I would recommend you start to do your research and consider a g-tube. Here's why:

A gtube does not cause sensory issues. You can work on getting your child to eat again, but still feed them the nutrition they need through their tube.
A gtube is hidden under clothing and people will not stare, as they would with an NG tube.
A gtube takes the pressure off the parents. It was my sanity saver! It made me stop worrying about my child's growth and feeding her. I was finally able to enjoy her as my baby and heal those bonds that had been broken through my struggles to feed her and her struggles to fight me. She can keep it as long as she needs it.
A gtube can help you manage reflux better.

It is important to note that in some children reflux will become temporarily worse after the gtube placement, until the stomach heals and adjusts to contracting around the tube. In most kids it will resolve itself within a few months. Many surgeons will want to do the fundo in order to prevent this temporary worsening of reflux. It is my opinion that it's worth it to wait it out and see. Nitara's vomiting is almost gone now. I'm glad we waited.

My strategy with her to prevent vomiting after the gtube was to:
1) put her on continous feedings via portable feeding pump. Slow drip, 2 oz per hour for most of the day with just a few hours off the pump.
2) giving her 3 oz every 3 hours around the clock via pump. Each feeding took 3 hours.

By giving her just small amounts, there was never that much in her stomach so her changes of vomiting lessened. It took a long, long time to work up to larger amounts and space the feedings out more. I had to be patient and allow her body to grow. After she got her NG tube she went from FTT to 50th percentile in just a few months. She went from mild developmental delays and severe sensory issues at 7 mos old, to a normal, healthy child with typical development by 12 months old. This was because she was finally getting adequate nutrition via the tube (and if she vomited I could just give her more), and because she got put on a medicine that helped control the acid in her vomit so she was no longer in pain.

She is now almost 2, eating 50% by mouth when not ill, very social and active and happy. Her weight has dropped off a bit with the tube-weaning but she's being watched and weighed during this process. She had several months of feeding and occupational therapy that was very useful. She can take about 6 oz in her stomach now. Slow and steady wins the race.

I have no regrets about her gtube.And even with all the vomiting, enough to drive anyone insane, I never regretted not getting the fundo done.