It was my first day at a local moms' group. It was a place where I was supposed to feel supported, encouraged, and loved, and heaven knows, I needed that. But before the meeting even officially started, the director of the group approached the microphone and made the following announcement:
"Would the mother of (my daughter's name) please go pick up your child? She vomited and is completely covered in stomach acid."
Way to make an impression. Way to feel supported, encouraged, and loved.
When my girls were still infants, there were times when I spoke with parents of non-GERD babies who did not understand why I was not more involved in my church, community, or even a professional organization. When I tried to explain the extra demands that go along with caring for a GERD baby, I was often met with quizzical looks. Every once in a while, a bold mother would ask me outright, "But caring for a GERD baby isn't like caring for a special needs child, or a child who's dying of cancer. They have medicine for reflux. Just give the girls a pill and move on with your life."
Give them a pill and move on. If only it were that simple.
Make no mistake: there are some babies whose acid was so mild that a simple little miracle pill "took it all away" and made life easy for them and their parents. (These would typically be considered colicky or GER babies, though, and not truly GERD babies.) But for others--the true GERD babies who fall in the moderate to severe category and do not grow out of the symptoms in a year--it's not that simple.
Taking care of a baby or preschooler with moderate to severe acid reflux is time-consuming, energy-absorbing, and sleep-depriving in its most basic sense. There can be difficulty establishing a routine, which is almost always complicated by the nagging, nearly-insurmountable self-doubt that maybe, just maybe, you're not able to handle motherhood or parenthood like everyone else around you who seems to breeze right through it with hardly even a blink. You know your child has special needs, but until society around you recognizes that, you can't really find a support group that understands.
The good news is that in recent years, physicians, therapists, and specialists have begun to examine GERD more closely in relation to special needs. Part of this is due to the increasing diagnosis of GERD in children who already have other classified special needs such as autism, and Down's syndrome. But part of this new consideration, too, is due to the fact that pediatric GERD patients exhibit so many other symptoms beyond incessant crying during infancy. Ongoing physical symptoms of GERD include feeding issues (difficulty swallowing, food pickiness, texture issues, pica--or routinely eating non-edible items, etc.), breathing difficulties (chronic croup, asthma, wheezing, stridor, enlarged tonsils and adenoids, etc.), motility concerns, gross motor developmental delays, and speech delays. Pediatric GERD patients also regularly exhibit sleep disturbances including sleep apnea, nightmares, night terrors, and chronic insomnia. They also have emotional struggles: excessive clinginess, extreme and sudden tantrums (which often include growling or other animal noises in addition to screaming and crying), periods of violence or self-harm (self-biting, hair-pulling, head-banging, etc.)
Taking all these symptoms into consideration, it is no wonder that a simple little pill sometimes does not "do the trick" for children with moderate to severe GERD. It should also be no surprise that professionals are beginning to consider GERD a special needs category in its own right, considering the fact that parents of GERD patients struggle to help their children cope with the same symptoms that make other diagnoses--such as autism, for example--worthy of the term "special needs."
Taking all these symptoms into consideration, it is no wonder that a simple little pill sometimes does not "do the trick" for children with moderate to severe GERD. It should also be no surprise that professionals are beginning to consider GERD a special needs category in its own right, considering the fact that parents of GERD patients struggle to help their children cope with the same symptoms that make other diagnoses--such as autism, for example--worthy of the term "special needs."
For more information about professional organizations offering support and therapy to pediatric GERD patients as special needs children, you may check out the following links:
ComeUnity Support Website for Parents of Children with Special Needs, including GERD
PAGER article regarding GERD in Special Needs Children
GERD Issues Requiring Physical Therapy
GERD as an Area of Specialization in Physical Therapy
Jan Gambino (MD and GERD Author/Mother) discussing the link between Acid Reflux and Autism Spectrum Disorders
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