It's been a month since I last blogged about GERD, and some of you, (my friends who follow me privately), have been asking where I have been. Well, I've been experimenting with a gluten free diet for the girls. After my experiment with the goat's milk (which enabled them to sleep better until they simply refused to drink it based on taste preferences), I realized there was a clear tie between their diet and their sleep--and it was possibly related more to protein (casein) than sugar (lactose). So I took it one step further and decided to try the gluten (grain protein) part of the Gluten Free Casein Free diet, since gluten and casein intolerance often go hand-in-hand.
I began the gluten free diet because I understood it could work miracles on the sleep patterns and behavior issues as well as the dietary struggles of individuals with a variety of conditions: acid reflux, autism, Asperger's, ADHD, Crohn's, colitis, irritable bowel, hypoglycemia, schizophrenia, wheat allergy, etc. This diet relies heavily on what is considered "the brain-bowel connection." In other words, the diseases and conditions mentioned above often have overlapping symptoms because what happens in the digestive tract impacts the way the brain is able to function: if the body is unable to absorb all the nutrients necessary for optimal health and well-being, certain "triggers" are going to go off--triggers which (besides digestion) affect behavior and sleep.
I have a very mild wheat allergy myself: I can eat wheat, just in limited amounts. I don't have to worry about elimination or cross-contamination. But while mine was diagnosed through a blood test after years of obvious trouble, my girls' symptoms are (according to our medical professionals) more behavioral than physical, and as behavioral problems, they fall under the category of "Mom's not being tough enough." So runs the repeated advice I get.
Of course, the doctors are not present in the middle of the night when I'm lying awake listening to my daughter struggle to sleep, as she tosses and turns for hours on end, pleading, "Please, please, please, Jesus! Help me sleep!"
They're not there when she has random outbursts or meltdowns (not tantrums, mind you) that include physical shakiness or paleness--when a little bite of protein instantly calms her and she's back to normal. This, from the child who is so self-controlled she generally puts herself into time out when she knows she needs it--sometimes before she does something naughty!
There are times when she awakens on her own, rolls over, and goes back to sleep. Those are not the issue. The problem arises when she cannot sleep for 2 or 3 hours at a time. Usually, she tells me she doesn't feel good but can't explain why. Last night, for the first time, she offered the strange response, "My hands hurt." Upon further questioning, she explained, "My hands are trapped and I can't use them." I don't know if her hands "fell asleep" and she couldn't move them when she first awoke, or if something else was the issue.
Sleep is important--for anyone, but particularly for young children as they are growing and developing. When they go without sleep, they become easily frustrated and more prone to illness and meltdowns. Most of the professional advice I have received (i.e. ignore them at night and they will stop making noise when awake) neither works nor addresses the problem. Ignoring the sleepless child at night may enable the parent to sleep more, but it doesn't enable the child to sleep, which is the core root of the problem!
So I put the girls on a gluten free diet. It was easier with my younger child, who is home with me all day and never out of my sight. The diet worked wonders for her. Random meltdowns during the day diminished, and her sleep at night improved. She now regularly sleeps through the night, and her night terrors are less frequent. On those days when she does eat some gluten, the night wakings and night terrors return. Clearly, there's a connection.
With my older daughter who goes to preschool twice a week, it's been a little more difficult, since she is more likely to get crackers and pretzels during the day. But with the teacher on board with the new diet, and with my daughter exerting her 3-year-old self-control to eat only what I provided in her lunch box, I was able to eliminate gluten from her diet as well.
Her results were not so drastic. Her meltdowns during the day are diminishing, but her sleep at night is not improved, and that is a primary concern for us. Ideally, I would like to keep her on the gluten free diet and switch back to goat's milk to see how she does, but that's going to be a bit tricky. These things take time, and you can't just switch a preschooler's diet all at once, especially when that preschooler is a picky eater!
While there are plenty of research sites out there on the Internet for eating gluten free, one of the best books I have ever read on the subject is Breaking the Vicious Cycle by Elaine Gottschall, which discusses the specific carbohydrate diet--one that is even more restrictive than the gluten free diet. However, this book clearly explains the digestive disruption that takes place when an individual has been on antibiotics or acid-reducing (or suppressing) medications. This disruption is consistent with my post on Proton Pump Inhibitors, so I won't go into repetitive detail here. Suffice it to say, I think any parent weaning their child (infant or toddler or even older) off acid medication or multiple rounds of antibiotics should spend a month or two placing their child on the gluten free diet or the specific carbohydrate diet, in order to allow the digestive tract time to heal, before gradually introducing the child to gluten products again--if they choose to return their child to a normal diet. And for those parents whose GERD children continue to suffer from insomnia and random meltdowns, the gluten free diet is well worth considering as an option.
Showing posts with label Special Needs Concerns. Show all posts
Showing posts with label Special Needs Concerns. Show all posts
Monday, April 12, 2010
Monday, February 22, 2010
Pediatric GERD and Special Needs
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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