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Samuel and Jennifer's Stories
Samuel and Jennifer's Stories...A Success and A Work In Progress
This story starts with me finding out that I was having twins. Imagine my shock since no one in my family has ever had twins! I had a relatively easy twin pregnancy, so I figured that I was either going to have an easy set of twins or was going to pay big time with them!! I would say neither has happened really. Samuel and Jennifer were born August 23, 2005. Jen was 5 lbs. 9 oz and16 inches long, and Sam was 5 lbs. 5 oz and 17 inches long.
Let's start with Samuel, as he is the easy one and the success. His battle with reflux started in his third month of life. He had been a "happy spitter" up to that point, but after getting the stomach bug from his big brother, he became quite the unhappy spitter!! He would stop to burp halfway through his feeding and once the burp came along with a little bit of spit-up that feeding would be over. He would refuse to eat anymore. We could get a whole feeding into him only if he didn't stop to burp. This was easily fixed with thickened feeds....or so we thought. The rice cereal led to constipation and even an ER visit for inconsolable crying due to what we then found out was the constipation. We got rid of the cereal in the bottle and put him on zantac. We tried this for 2 weeks without success. Back to unhappy Sammy. Once we went back to the thickened feeds he was ok again, as long as we added prunes to help keep him regular. This soon, however, became not enough and he had to be started on meds. again. This time, the doctors opted for prevacid along with the thickened feedings. This did the trick and we had our happy baby back. We were able to wean him from the prevacid at 8 ½ months old and he continued on just the thickened feeds until he went off the bottle at a year old. We haven't looked back since.
Then there's Jennifer...our work in progress. At 3 weeks old, Jennifer started having problems with eating. This was about the same time that I had to stop breastfeeding and go to formula. I, still to this day, wonder if things would have been better for her if I had only been able to continue breastfeeding her. During a feeding, she would arch her back, scream, turn purple, draw up her knees, and pull off the bottle frequently. We tried different bottles, gas drops, thickened feedings, and every supposed remedy out there with no change in her. Just after this started she was admitted to the hospital for a fever and a sepsis work up. The nurses noticed it, but she was in the NICU of the hospital I work at as a favor to me and they weren't totally used to working with a term newborn that old (almost a month old) so they weren't sure why she would act this way.
Once discharged, the feeding troubles continued along with frequent screaming unless she was being held and soothed. On a Friday afternoon, I was at my whit's end and was about to call to schedule an appointment for her when I noticed that her cheek was suddenly quite swollen. Another hospitalization (this time at a larger children's hospital) and sepsis work up followed. She was diagnosed after 3 days with parotiditis. During this hospitalization, the attending pediatrician also diagnosed her with silent reflux. This started the process of her symptoms being minimized. He didn't want to treat the reflux at that time due to the difficultly they were having diagnosing the parotiditis and so that he wouldn't "step on your pediatrician's toes".
The day after she was discharged, she saw her regular pediatrician who stated that she "could" have some reflux but that it also could be colic. He did start her on zantac though. At first we saw a difference. She slept better during the day (we were fortunately blessed with a wonderful nighttime sleeper, though she screamed all day) and initially we thought we had our answer. We did some formula changes with minimal results. Each subsequent visit was met by reluctance to increase her zantac dosage based on her new weights. I was also told at each visit that she would "outgrow" this. I do believe that at this time it was felt that I was overreacting to a crying baby and that I was overwhelmed at having a 2-year-old and fairly newborn twins. In my heart, I knew it was so much more though.
At 4 ½ months, I had finally had had enough. Seeing my baby being in so much pain and having little time for my other two children, I took her for a second opinion to another pediatrician in my group. She agreed that Jen had moderately-severe silent reflux and immediately changed her to prevacid. I had myself a new baby after a few days!!! We saw major improvement in feeding and in her comfort level. She did have a major flare at 6 months old, where she again became uncomfortable and refused to eat for 2 days. I discovered the magic of Mylanta Supreme at that point and was able to ward off full food aversion. All the while, she continued with gurgling breathing. She was treated with two rounds of antibiotics to make sure this wasn't a sinus infection. No improvement was noted.
At 7 months old, we made our first visit to a pediatric GI doctor. I told them I was afraid she was having lung problems from the reflux and that I didn't want her to end up with asthma. At this point she had had several episodes of wheezing. I was told by him that there is no cause-effect relationship between asthma and reflux. He did a swallow study on her at 7 ½ months old. This showed microaspiration meaning that formula was entering the airway but not fully going into her lungs. It was recommended that we change bottle nipple types and continue thickened feedings. We were told she would outgrow both the reflux and the microaspiration. At this point her reflux was pretty stable on the prevacid and besides a hospitalization for dehydration at 8 months old and the continued gurgling breathing, we were doing well.
At 13 months, we took her off her prevacid assuming she had outgrown reflux since she had been doing so well. At this point I had noticed that she would cough every time she drank any liquids and asked for a repeat swallow study. My request was not granted. The first four weeks off prevacid went well. The last two went not so well. She would suddenly start to scream inconsolably. It took me 1 ½ weeks to figure out that this was reflux rearing its ugly head again. Mylanta helped me figure out that it was reflux and not behavioral. It would calm her instantly. At this time she was put back on the prevacid and I again asked for a swallow study as the coughing had continued. It was again denied.
At 19 months, Jen was first seen by a pulmonologist for continued asthma symptoms that were viral induced, exercise induced, change in air temperature induced, emotionally induced. She was diagnosed with infantile asthma, which came as a crushing blow to me. This was why I had first brought her to the GI doctor. She was started on singulair, and continued on albuterol and pulmacort as needed. Singulair was a wonder drug for her. It basically took all the asthma symptoms away. Upon follow up 3 months later with the pulmonologist, I again mentioned the coughing with drinking and that the GI had not been concerned. The pulmonologist ordered a swallow study. Jen miserably failed it and had evidence of aspiration with every swallow. She was immediately put on nectar thickened liquids and no longer coughs when she drinks.
Upon recommendation of the speech pathologist performing the swallow study, I took her to an ENT doctor and had her vocal cords looked at. They were terribly inflamed and swollen. He said this was due to undertreated reflux and was causing the swallowing problems. Once the GI got this news, he finally started taking us seriously and tripled her prevacid dosage. About this time, she started having episodes at night where she would wake up coughing, gasping, choking, and screaming. It is assumed that she is refluxing and waking up when she aspirates and has difficulty breathing from the aspiration. This would happen 4-6 nights per week and 1-3 times per night. Based on this, it was elected to do an endoscopy and a bronchoscopy.
The endoscopy showed no inflammation in either the stomach or the esophagus, so we know that she is on enough acid supression to protect them. She did have some inflammation in the small intestine though, so she is being tested for celiac disease. The bronchoscopy showed small amounts of both inflammation and cells evident of aspiration, but both were fairly mild, so for now we stay the course. She will have her vocal cords re-looked at in October, 2007, and then we will make any changes from there.
In October, Jennifer's vocal cords still showed no improvement in
inflammation, so Zantac was added at bedtime. Jennifer's issues were
minimized by the GI doctor, so this was the last straw for us. Knowing
there was more to the story and needing more answers, I transferred her
care to a multidisciplinary team at Children's Hospital Boston. At her
first visit there, they did more for her than she had had done in all
her previous visits combined.
The first thing the
team there did was to take her off milk and soy. With this strict
diet, she is almost reflux free. They also rescoped her vocal cords in
the office, and with the added Zantac they were finally healed!! The
next visit entailed a triple scope (this was delayed several months by
a bout of pneumonia) involving an endoscopy (GI), bronchoscopy (lungs),
and laryngoscopy (throat/upper airway) along with a 24-hour esophageal
impedance study to quantify her actual number of reflux episodes.
During these scopes, it was found that the inflammation on the last
endoscopy in her small intestine had healed on the milk/soy free diet.
It was also found that she has a rare anatomical abnormality called a
laryngeal cleft. This is what is causing all her dysphagia (swallowing
difficulty) and aspiration and is the bigger picture that I kept saying
was there! She is scheduled for surgery later this summer to repair it.
Written by: Benstwins, Tracey
Read more about Children's Stories:
Zac's Reflux Success Story,
Noah's Story,
Emma Claire's Story,
Evan's Story,
The Story of Andrew,
Owen's Story,
Raeden's Story,
Olivia's Story,
Hannah's Story
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