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Isabella’s Story

Isabella was born in February, 2003. From birth on she had problems eating and sleeping. She cried all the time and slept very poorly. The pediatrician said to give her formula when she was three days old. I breastfed her and supplemented her with cow’s milk and then soy formula but it didn’t seem to help and she resisted it, refusing it entirely by six months of age. It took her four months to regain her birth weight. She never spat up at all but was skipping entire nights of sleep from the time that she was less than one month old. Our pediatricians told us first that it was because she was new baby and just adjusting to the world, then at three months, it was because she was teething. Teething was the explanation for inability to sleep and crying until her second birthday. On her first birthday, she weighed fifteen pounds, not even having doubled her birth weight. She was very bright, very precocious and extremely thin to the point of emaciation. More than one doctor told us that we just needed to let her cry it out locked in her own bedroom to get her to sleep when she couldn’t fall asleep in our arms until she was at the point of physical collapse.

From age 2 to 2.5, she was sleeping only four hours per 24 hour period. When our son was born, he immediately slept far better than she ever had and we went to the pediatrician and asked for a referral to a sleep specialist. We saw a doctor at Georgetown who diagnosed her as probably having silent reflux and gave her a prescription for Prevacid and a referral to a GI at Georgetown. This turned into the worst period of our lives, as she stopped eating almost entirely, didn’t gain weight for a year and a half and stopped sleeping almost entirely. On her third birthday, I was forced to quit my job and drop out of my tuition paid graduate school program right before finishing a Master’s. Isabella could only fall asleep after 4 a.m. every day and I would stay up until 6 a.m. daily to give her Prevacid on an empty stomach as she finally collapsed in sleep. Her GI insisted that Prevacid was the best drug for her, that she simply had reflux and that we weren’t dealing with her correctly. We tried an elimination diet for her, eliminating the eight most common food allergies and she lost even more weight and had failure to thrive. Isabella was scoped on her third birthday and the second page of the laboratory report stated that in view of the high degree of eosinophil infiltrate in her esophagus, eosinophilic esophagitis had to be ruled out but her GI apparently missed this fact because she told me over the phone that EE was not an issue. We had been drugging her with Benadryl and melatonin to get her to sleep and on the rare occasions she fell asleep, she would scream in her sleep for hours.

We switched her to Prilosec against the doctor’s advice in September of 2006 and it helped somewhat but the screaming episodes continued. Finally, we went to see a GI at Children’s Hospital National Medical Center and he told us that there was no way simple reflux was making her scream in her sleep when she was already on an adult dose of omeprazole. She was scoped in June of 2009 and we learned that she did indeed have EE. After five days of Pulmicort, she was able to actually fall asleep somewhat normally for the first time in her life, though she is in pain continually. Eating and sleeping are still very difficult for her but she is at least able to attend school, something that we were afraid would never be possible. Her growth has been stunted by EE and she and her five year old brother are about the same size as they have been since he was six months old and she was three, though he now outweighs her.