Fashion can come and go. These days it seems like the safety of our children is at risk of becoming the new vogue. Drop down cribs, bumpers, sleeping on the belly, to name a few in a long list of things that have become taboo.
As mothers, it's hitting us below the belt. A mother's instinct is to love and protect above all else. It's become impossible to block out the noise and decipher fact from fiction. We fall victim to consumerism and doubt when buying the latest positioner or tossing out adorable bumpers that make us smile during those long, early sleepless nights based on new expert information that these things could suddenly be the cause of Sudden Infant Death Syndrome.
When I was a child I slept on my stomach usually sucking on a bottle full of sugary milk. Ignorance is bliss and I can assure I slept well. More importantly my parents were able to shut off, recharge and not feel powerless that their precious child would stop breathing in the middle of the night due to a product malfunction.
The same holds true with medicine and today's diagnosis of our children. We need to be our own detectives and fill in the gaps when physicians and modern medicine can't provide clear answers. With environmental toxins, food allergies and nutrition playing a huge part in the development of our children, things like strep throat and the flu are black and white, but very little else is.
I gave birth to my daughter at the same time as my best friend, Samantha. We were two new mothers sharing a very different experience. Samantha's little girl, Lucy, seemed to be in pain all of the time. It was always something, from chronic ear infections, eczema and colic to stomach issues, allergies and mysterious pain.
Lucy was an unhappy baby and extremely sensitive. She cried almost all of the time and would only calm down if Samantha and her mother danced to loud music with Lucy in their arms. Once calm, any noise would set off another crying spell, which lead to the calming process starting all over again. She was allergic to breast milk, soy and most formulas and even the slightest deviation in her food and nap schedule would set off a volcanic eruption. Samantha was exhausted and on edge. Lucy demanded silence, would only eat bananas and only liked soft blankets and clothes. She would cry over the tags that "scratched" her neck. It was almost as if the world was too much for her. She came out screaming and never stopped.
Samantha and her husband fought every day over Lucy's schedule. Back at work most of the time, he couldn't understand the rigidity of it. He blamed Samantha for being too precious with their child. Soon Samantha felt like a failure as a wife and a mother because nobody seemed happy.
As a friend I supported her but I didn't see her much. She retreated into her own world and while I was discovering cool things to do around the city for new moms, I got the sense she was falling deeper into a black hole of despair. She would later share this story with me and agreed to this post hoping her story would help others.
Samantha's house became an unhappy home, she would complain that their sex life was non-existent with both parents emotionally exhausted and physically drained from the demands of Lucy.
Each blamed the other but neither knew what for. How could a baby not even a year old rule the house? Samantha was diagnosed with post-partum depression, but deep down she knew the challenge of an unhappy baby was traumatic enough to cause her depression.
"She will grow out of it," soothed her family and friends along with her pediatrician. All the while, we were secretly pleased our own children were napping quietly in the corner with occasional identifiable outburst from being tired or hungry. We all wanted to help but we didn't know how.
Samantha shared her feelings of failure. Deep down, she felt something wasn't right with Lucy but she was having trouble putting the pieces together. Lucy was hitting all of her developmental milestones. She just seemed so unhappy, like there was a mysterious source of pain.
By age three things had gotten worse and various frightening labels were being thrown around to explain the mystery that was Lucy. At preschool Lucy was having trouble interacting. One minute she would be happy and accommodating and the next trailing off in her own world, impossible to reach. Although extremely verbal, she couldn't seem to understand social cues and often would stand to close, poke other children or talk louder than she should.
She was even beginning to show signs of obsessive-compulsive behavior; hand washing, counting, chair shifting and oral ticks. The staff was doing their best to manage but it was clear they were frustrated. Samantha hit a new low when medication was suggested as the best solution... for her 3 year old.
"Well, you just need to have more play dates. She'll get more social," her friends advised.
However, requests were few and far between. The ones that agreed would either end up in a power struggle with little Lucy or eventually cancel or come up with mysterious illnesses.
Lucy's erratic behavior also affected her eating patterns. She became a picky eater, would eventually become a picky eater, almost addicted to pasta or anything white. As her diet became narrower, her mood swings widened. One minute she was jumping and crashing into things or teetering on the edge of a chair. The next she was lost in space and unreachable.
She was terribly uncoordinated and had trouble with motor skills which made her feel even more awkward socially. She couldn't do puzzles due to lack of focus and she often cried and covered her ears when any loud noise occurred. Crowds became a problem and she had trouble with transitions, waking up or going to sleep.
After many frustrating appointments with "experts," Lucy was finally diagnosed with Sensory Processing Disorder (SPD) and a regimen of occupational therapy was prescribed. Finally, Samantha thought family life would get better. She started to receive OT twice a week and certain behaviors improved,but then Lucy started to struggle with anxiety and feeling like she was different from other children. Samantha felt trapped in a bad game of "Whack a Mole." No sooner would she beat down one problem and another more complicated one would rear its ugly head.
A meeting with her pediatrician did not help. Samantha learned that SPD is a controversial diagnosis and perhaps even a fad. It sounded like SPD was the latest kiddie diagnosis fashion. "Was SPD the new black?" she asked herself: in today, out next year?
The research is growing but the medical community is still looking and not ready to buy. Most doctors still prefer to treat the symptoms, lack of focus, irritability and behavioral issues by assigning the bucket term ADHD and then prescribe medicine. With Lucy now turning four, Samantha wasn't prepared to go down the pharmaceutical road just yet. She didn't want to mask the symptoms. She was hell bent on getting to the root of the problem.
Further research revealed that SPD is a neurological condition that distorts the way we receive and perceive sensory input through sight, sound, touch, taste and movement. It affects daily functioning, social and family relationships, behavorial challenges, regulating emotions, social esteem and learning. If undiagnosed it can cause significant delays, anxiety and depression.
One study (Ahn, Miller, Milberger, McIntosh, 2004) shows that at least 1 in 20 children's daily lives is affected by SPD. Another research study by the Sensory Processing Disorder Scientific Work Group (Ben-Sasson, Carter, Briggs-Gowen, 2009) suggests that 1 in every 6 children experiences sensory symptoms that may be significant enough to affect aspects of everyday life functions.
Samantha thought Lucy probably had SPD, but the diagnosis alone did not address all her issues. There must be techniques beyond OT that could help her distressed little girl, she reasoned. The aha moment came when Samantha ran into a book by nutritionist/nutrition detective Kelly Dorfman, "What's Eating Your Child? The Hidden Connections Between Food and Childhood Ailments (Workman 2011) was filled with similar case studies as Lucy. Using real stories from her practice, Dorfman would draw a connection between diagnoses, like SPD and nutrition problems. Samantha jumped to the chapter on the nutritional connections to SPD but the story did not match her situation. Then she started reading one entitled, "The Bipolar Child Who Wasn't," and the scales literally fell from her eyes. Bottom line, Lucy , though a preschooler, behaved like a bipolar child. She would have been very depressed except that Kelly suggested there could be a nutritional link.
Samantha immediately called for a consultation and the fractured pieces of the puzzle began to come together. After a brief family history, Kelly informs Samantha, "Lucy's mood disorder may actually be a food disorder." She wondered if the stomach pain, joint pain, eczema, bloating and constipation were all symptoms of a gluten-loaded diet. With a long history of stomach issues herself, Samantha stepped forward and agreed to take the whole family off gluten as well as go for initial rounds of gluten screening tests. Kelly also started Lucy on a 90 percent concentrated EPA fish oil supplement to combat anxiety.
Kelly explained it's possible Lucy is exhibiting celiac with neurological symptoms. "These symptoms include numbness and tingling of the arms, legs, hands, or feet, dizziness, headaches, irritability, difficulty concentrating, depression, anxiety or more severe symptoms such as seizures." In a toddler, this will look and operate like SPD.
Kelly added:
"There are no great screening tests for celiac disease with only neurological symptoms yet. Last year the Lancet published a piece on how we are just starting to understand this tangled gut nervous system connection. Lucy could have an endoscopy to rule out classic celiac disease, but she did not have the stomach symptoms to warrant it. Besides, if it came out negative, Sam would have wanted to try a gluten-free diet anyway. She decided not to put Lucy (and herself) through one more torturous process."
SPD is a condition rooted in uneven neurological development. There are many causes so why not a dietary irritant? Samantha learned that the immune system communicates with the neurological system. Through most of Lucy's life she was receiving distress signals and reacting accordingly.
The supplements and nutritional changes were having a stunningly positive affect on Lucy. She liked the new diet, which was shocking in itself and immediately said she felt better. She didn't have as much stomach pain, gas or bloating and the eczema started to diminish on both children.
After a few months, Lucy became calm, smiled more and the strange, risky behavior started to lessen. The improvements were mind-blowing and noticed by each member of the family. Soon she had more play-date requests than Samantha needed or wanted. The family dynamics improved dramatically and although Lucy still had focus issues, it was as if she had grown up over night.
When Samantha reported back to Kelly, she replied, "that's often what it looks like when it works. When you do the right therapy for a child with SPD, it looks like they are 'growing out' of the behavior. The nervous system collates and coordinates information better. She looks more mature because neurologically, she is more mature. "
Soon everyone began to heal and the family really transformed. Samantha stopped blaming herself for a child overwhelmed by anxiety and mood issues. She also started to realize the depth of a mother's guilt. It sapped all of her energy, leaving her tired and depleted.
I think of Samantha's story and I'm reminded as a woman and a mother, that at some point, we need to be detectives, follow our own hearts and instincts. Nobody knows our children better than we do. We also need to give ourselves a break.
If you have had an experience like this or have a child diagnosed with SPD please share it with us.
Heidi Brod has a daily newsletter/website DishInOutBeauty.com that focuses on health and beauty from the inside out.
Kelly Dorfman, MS, LND, specializes in finding nutritional solutions to common ailments. She lectures on diet and health around the country, has written dozens of articles on children and nutrition, and has served, by governor's appointment, on the Maryland Board of Dietetic Practice. All quotes taken from her or her book, "What's Eating Your Child" (Workman 2011).
Research cited from the Sensory Processing Disorder Foundation
Follow Heidi Brod on Twitter: www.twitter.com/dishinoutbeauty
There is NOTHING fashionable or glamourous about SPD, however, everywhere we go, yes, we are looked at like we are on the runway. Strike a pose people, and stop staring, it doesnt help. So for all of you who do benefit, great. However, for those of us who nothing helps, stay strong, and hold your head high, and hey... go eat some pasta and cookies!
Either way, i can see by your last line you are still laughing (and crying) and at the end of the day both help us get through the hard days. Thanks for your comments. Either way, we like to hear from you. Heidi
Thanks again and sorry it didn't post!
I'm so glad. Let us know if it makes a difference. Kelly's book is also a wonderful resource and its nice when a doctor supports the theory.