By Stephanie Petters, leader of API of North Fulton, Georgia, & API’s Membership Liaison
**Originally published in the Fall 2007 Special Needs issue of The Journal of API
New Year’s Eve and New Year’s Day used to be uneventful times for my husband and me. Then, my daughter Hannah was born. The New Year holidays of 2004 etched permanent and vivid memories in our brains.
We had our beautiful newborn in our arms protesting at the top of her lungs. She had just spit up for the third time in the past half hour. Beginning that New Year’s Eve, we were awake for an entire 48 hours. Hannah was either spitting up or crying. She was very uncomfortable, in pain, and exhausted. We were sleep-deprived and mentally drained. This seemed to be our routine for the next month.
Something with this situation wasn’t sitting right with me. I knew newborns spit up, and I knew it was to be expected to not get much sleep, but it seemed like this was in excess. But then again, I was a new parent. I doubted my instincts and listened to those around me who said, “It’s just normal.”
I finally decided to start doing some research to verify if we were overreacting. I looked through Dr. Spock’s book but was uncomfortable with the information I received. I then read The Baby Book by Dr. Sears. I loved the information I received, as well as the fact that it helped me look into food being a trigger and encouraged me to talk with our pediatrician if I suspected Gastroesophageal Reflux (a.k.a. “GER,” or “reflux”).
We went to our pediatrician recounting what our past month and a half had been like. Things like: Hannah arching 15 minutes after nursing, spitting up so much that we went through six soaked outfits a day (we always had a burp rag available), her seeming to sleep 15-minute stretches at a time at night and only napping if we rocked in the rocking chair in an upright position, her incredible pain whenever we changed her diaper – turning bright red, her body going stiff, and screaming the type of scream that activated my maternal alarms.
After telling the pediatrician all of her symptoms, he felt that we were definitely dealing with reflux, a condition that, in his opinion, is fairly common. We could prescribe a medication or just wait it out until Hannah outgrew it. He said that most babies do by six months to 12 months of age. We chose medication. I wasn’t comfortable with prescribing her medication at such a young age, but it did seem to help her tremendously.
What are the Signs of Reflux?
There are many different symptoms of GER. Your child may only have a few of these symptoms. The most common symptoms include:
- Pain, irritability, constant or sudden crying, “colic”;
- Frequent spitting-up or vomiting;
- Projectile vomiting;
- Vomiting or spitting up that occurs later than one hour after eating;
- Spitting up beyond the usual developmental stage;
- Refusing food or accepting only a few bites despite being hungry;
- Poor sleep habits, frequent waking;
- “Wet burp” or “wet hiccup” sounds;
- Bad breath.
Less common symptoms of pediatric GER include:
- Constant eating and drinking (to soothe a sore throat);
- Intolerance of certain foods;
- Poor weight gain; weight loss;
- Swallowing problems, gagging, choking;
- Hoarse voice;
- Frequent red, sore throat;
- Respiratory problems, such as pneumonia, bronchitis, wheezing, asthma, nighttime cough, apnea, aspiration, noisy or labored breathing;
- Ear infections;
- Constant running nose, sinus infections;
- Tooth enamel erosion;
- Excessive salvation, drooling;
- Peculiar neck arching (Sandifer’s syndrome).
PAGER…and Relief at Last
Then the medication started to become ineffective, and I really wanted to find the cause of the reflux rather than just continuing to treat the symptoms. It was very intense for us at home with so many sleepless nights and the days being constant. We wanted some relief, but I didn’t want to jeopardize her health by missing the important “clue” to her reflux. I wanted my baby to stop being in pain.
It became my mission to understand this medical condition, so that I could more effectively help my daughter. I had conducted this sort of investigation before, when my husband was diagnosed with IBS (irritable bowel syndrome). I focused on finding the “reasons” for the condition and trying to implement possible solutions.
Through my research, I found a wonderful organization that was consistent with my parenting style: Pediatric Association of Gastroesophageal Reflux (PAGER). My eyes were opened, and I discovered I wasn’t the only one suffering. I discovered that other families were also battling this, and that some of them were suffering far, far worse than we were. I devoured the wealth of information on the PAGER website, www.reflux.org. We learned to think about the reflux triggers for Hannah and to make accurate notes for the pediatrician.
We discovered that Hannah’s triggers seemed to be lack of sleep, stress, and food. Guessing from the foods that her father had a problem with (dairy and soy), I eliminated those from my diet. I noticed some improvement. I then went on to eliminate anything acidic, chocolate, as well as certain vegetables that were recommended by PAGER. That helped dramatically. We were still happily nursing; I was definitely on a limited diet but not as limited as others I had known.
Things were starting to get better. She still had her reflux but at least there were breaks in between the episodes. She was still a very poor sleeper, and the only way to have her sleep was on me (skin to skin) while I was in an upright position. It was very, very uncomfortable and definitely not consistent with safe sleeping guidelines, but it was working for our family and we were able to sleep in two- to three-hour stretches. For naps, she still needed to be in an upright position, but there was less daytime spit-up.
We implemented the home care techniques provided by PAGER (loose diaper, remaining upright for 45 minutes after nursing, keeping things calm for her, etc.), and those were making tremendous improvements. We really felt that we were possibly going to get ahead of the curve and beat the reflux after all.
Reflux Back with a Vengeance
Around nine months of age, we started introducing solids, beginning with the foods that were recommended by PAGER, except in jar form. One week after starting solids, her reflux was back in full force. It was New Year’s Eve all over again! We were beside ourselves. We couldn’t figure it out. We were using the foods recommended, the least allergenic and most gentle on the digestive tract.
I was then introduced to reading food labels and discovered that the baby food jars were adding fruit juice concentrate to the mix. Hannah was very sensitive to any amount of fruit juice. We started making her baby food at home with no additives. When we did this, we saw some improvement but not much.
Her silent reflux was really bad, but the pediatrician felt confident that she would outgrow this by 12 months of age. So we waited, put her on medication again, and just held her tightly – crying with her when there was nothing we could do to take away the pain and discomfort she was feeling. We felt so helpless.
What is Silent Reflux?
Silent reflux refers to the backflow of food or stomach acid into the larynx (voice box) or pharynx (throat) without spending enough time in the esophagus to cause heartburn. This is a dangerous condition, because although a person with silent reflux might not feel the pain associated with this condition, damage is still being done to his esophagus – putting the person at risk of complications such as ulcers, strictures, and cancer.
While silent reflux may not cause heartburn, other symptoms may arise from regurgitation (spitting up) and difficulty swallowing to sinus problems and even asthma. In many people, silent reflux goes undetected for many years before enough damage has been done to cause painful complications.
It was around the same time that we were also going to physical therapy to correct her torticollis. It was a very stressful time period for Hannah.
What is Torticollis?
Torticollis is a condition in which the head is tilted toward one side, and the chin is elevated and turned toward the opposite side. In most cases, it can be successfully treated through physical therapy to stretch and correct tightness in the affected muscle of the neck.
Time for a Food Allergy Test
Around 15 months of age, her reflux was not gone, and I decided that I was going to visit a pediatric GI either with or without a referral from the pediatrician. I felt it was time to take this to the next level. I didn’t want any long-term damage to Hannah, which would be a possibility if she experienced reflux for an extended period of time. The pediatrician agreed to the referral.
The pediatric GI listened very intently, perused my daily journals, and decided to go with my intuition that the reflux was related to a food allergy combined with a sensitive system. He noticed she had eczema and felt that she was having an egg reaction. Other than that, we thought she would show positive for a milk allergy.
The allergy results came back, and it showed that she definitely had an allergy to egg and peanuts but nothing else. He agreed that if she was sensitive to dairy that we should leave that out as well. We felt a breath of air escape us – at least we had an answer – even a possible solution. We stayed away from foods containing eggs and peanuts, as well as dairy, soy, chocolate, fruit juice, anything acidic, and a few other items. We noticed her system starting to improve and her reflux stabilizing again.
Now at three and one-half years old, she rarely has reflux attacks unless she eats or drinks something her body is allergic or sensitive to. If she is exhausted, her digestive tract seems to be very sensitive; and if she is too stressed, her digestive tract will tell us. We have to maintain balance for her – and when we do that, the reflux no longer rears its ugly head.
When I look back, it was a really rough road. Unless you’ve been down that road, you can’t truly understand. Reflux is so common, even in adults, that doctors and those around you seemingly dismiss the challenges it brings to a family. I have walked away with a deeper respect for any family who is experiencing normal or abnormal challenges, and a greater awareness of food and its impact on us, physically and emotionally.
I also have the most remarkable memories of holding Hannah in the sling, dancing, and gently swaying (we couldn’t jiggle her too much) to the song “Unwell” by Matchbox 20. As she listened to the song, I would rub her back, and she would relax. Her body was in pain, and I could do nothing to take it away, so we would wait it out together with this song. Now, when she hears it her face lights up and says, “Hannah’s song.”