Wednesday, November 28, 2018


Nostalgia: a wistful desire to return in thought or in fact to a former time in one’s life; a sentimental yearning for the happiness of a former place or time. (

Last week I heard a discussion on NPR about nostalgia and since then I’ve been thinking about the memories that cause me to experience nostalgia. These are a few:

  1. My dad is an avid cyclist. Actually he’s avid for all things fitness and I can only hope to be as in shape as he is when I’m 63. He got my sister and me involved in biking pretty early and that soon led to bike trips. This is essentially where people pay money to ride hundreds of miles with hundreds of other people and then sleep in tents every night. As an adult, I’ve been confused by my friends who pay money to run long distances in races, but I recently joined that trend and even though I still think it’s a little crazy, I’m planning to keep at it.
I believe we took our first bike trip when my sister was twelve and I was fourteen. An important aspect of the bike trip was training, because on average we would need to bike fifty miles each day, for six days. So my dad set out to get us in shape. Just so readers have a point of reference, my mom refuses to let my dad even attempt to “get her in shape”. He’s intense about training and exercise; he’s been logging his workouts and exercise goals since he was a child, so it literally makes me laugh as I’m writing this to think about my dad setting out to prepare us for a bike trip and the thoughts that were probably running through his mind. His regimen meant long rides on the weekends and some training on the stationary bike. He would load up the Honda Civic hatchback with our bikes and we’d head out somewhere in the country to bike a planned route. My dad had these little maps that he attached to the top of his bike bag and I wouldn’t have known if we ever got lost or not. We just knew we were going to bike until we got back to the car.

Getting back to the car was the fun part. Once the bikes were back on the bike rack, we’d drive to a gas station and my dad would buy Gatorade and a medium bag of spicy Doritos. And my sister and I would sit in the back seat chugging Gatorade and eating all of the Doritos. It was the best. I’m not sure why, since as an adult I never ever drink Gatorade and I rarely eat Doritos, but this is the memory I always come back to when I think about those bike trips and those training rides.

(There are many other memories regarding those bike trips that I’ll share in another post)

2. My dad has always worked late. He has a demanding job as a psychologist and after seeing patients well into the evening he would go to the gym, so this meant my sister and I spent lots of evenings alone with my mom. We’d often just stay home and do homework, play outside, or watch Rescue 911 or Home Improvement--which is really funny to me now because my husband grew up without a television and he’s recently been watching reruns of Home Improvement since we don’t have cable. Sometimes though, my mom took us to Beachwood Place Mall. Not for shopping, just to walk around--something to do in the winter I guess.

I tried to find a little history about the mall and its renovations, but couldn’t find much. The mall is very different today than it was in the 90s. For us, the mall was very exciting because where they now have an open area with escalators, they used to have a fountain with a glass elevator that would lower near the water. Near the fountain was the food court, whereas today, the food court is on the second floor. We almost never ate at the food court because it was too expensive, or my mom didn’t want us to eat unhealthy food and just told us it was too expensive, so instead, she would pack sandwiches in brown lunch bags for each of us and we’d sit on the steps to the fountain. My sister and I thought this was great fun--especially watching the glass elevator going up and down. Whenever I go to Beachwood Mall and pass through that area I remember sitting there, in a spot that no longer exists the way I remember it, with my mom and my sister eating our packed sandwiches just outside of the food court.

3. When I see mothers nursing babies I feel a pang of longing for the many hours I spent nursing Isabella. Isabella’s infancy to toddlerhood was simply the best time in my life. I felt a sense of belonging for the first time in my life and I was proud of my body for the first time in my life. Breastfeeding and La Leche League led me to establishing my most valued friendships with women I wouldn’t have met otherwise. Eleven years later each of those women, even though a few I haven’t seen in over a year, hold a very special place in my heart.

I used to sit in a very uncomfortable glider I bought at a second hand store, nursing Isabella to sleep and singing Amazing Grace and Grace Flows Down over and over again. Isabella would fall into that drunken baby stupor, milk dribbling down her cheek while I soaked in the weight of her, and felt as if I couldn’t bear to part with her, ever.

I think nostalgia shows up when you least expect it. It’s so interesting how very small, seemingly inconsequential details, will immediately jog a memory. Last week, we were having dinner and Walter asked how my grandma was doing, and before I responded he said, “‘bout half?’” because this is what my grandpa always said when we called and asked, “how are you, grandpa?” In the moment, I had to blink away tears and still do as I’m writing this.

Maybe after reading this, you can take a moment to remember the “happiness of a former place or time”.

Wednesday, November 21, 2018

Why do people have kids?

Last week Isabella and I were in the car together, and she was in the back seat because I don’t let her sit in the front. I don’t think I’m ready to have a front seat companion and even though she's eleven, she's probably not even big enough. My general rule has always been, no talking in the car. It’s my sanctuary or something. The rule started when Isabella was a toddler. She was basically born talking and since I’m a fairly quiet person who is extremely sensitive to noise, it just made sense that everyone should cease talking for at least ten minutes on the drive to the library, or the grocery store. So, it’s worked all of these years. My kids look at books or we listen to an audiobook, sit in silence, or very rarely, listen to music. But then over the last year I’ve realized I should probably allow talking because that’s supposed to be a good time for parents to bond with their kids or something like that.

With the ban on talking lifted, it meant on this particular day that I got to hear about Meth and how it destroys your body and could very easily blow up your house if you try to make the drug. Noted. So far sixth grade has been most beneficial for learning all about drugs and alcohol in health class. I don’t think she’s learned anything else. And as I was listening to the riveting facts regarding Meth, I thought, why do people have kids? I mean, really, what is the reason? This also gives you a window into the weird thoughts in my brain.

When you sign up to have kids, you also sign up to be in a perpetual state of exhaustion, give them all of your money, put stress on your marriage, have stretch marks in places you didn’t even know you could have stretch marks, and thanks to birth, lose your ability to hold your pee. So why on earth do millions of people sign up for this? And why do the people with kids get confused when other people don’t want kids?

I actually don’t have an answer. I googled: “why do people have kids” and it led me down the rabbit hole that is the internet, citing reasons like, “to give and receive unconditional love” and “fix the mistakes of their parents”. First of all, Isaac doesn’t even tell me he loves me back. When I drop him off at school I say, “have a fun day! I love you!” and he says, “bye, Charley!” and runs to the building. He also doesn’t hug me, so the whole love things is definitely not a good reason to have a kid. Secondly, you might fix the mistakes of your own parents but you are surely going to make a million of your own mistakes, so that’s a horribly selfish reason to bring a human into the world.

I got pregnant with Isabella when I was in my last year of college (which was actually my fifth year of college). Before that I had a surprise pregnancy and before that, I wasn’t planning to ever have kids. I know, crazy turn of events. Doesn't make sense to me either, but something weird happens to the brain when you read those two lines on a positive pregnancy test. For me, after the panic dissipated, I thought what power my body had to hold and grow a life. And then I immediately fell in love. I am completely aware that it may not be this way for everyone, but with our first pregnancy that came and went so quickly, I fell in love, plain and simple. And though my miscarriage was extremely early, apparently these days it’s called a “chemical pregnancy” which seems so cruel, I felt like a mom, instantly. Because what does a mom do: protect, grow, love, nourish...whether you’re newly pregnant or the mother of three...and as I had a miscarriage, I felt I’d failed at all of those things.

From that point it seemed only natural to me that I would want to get pregnant again. I desperately wanted that life inside of me again. So I did, and I graduated from college about a month before Isabella was born. Two years later I still wasn't interested in having a second baby. I loved Isabella so deeply (and still do, obviously) that I couldn’t imagine having another child and thought we were perfect with just Isabella. But after some convincing, I told Walter he had two months and if I didn’t get pregnant one of those two months we were done. I got pregnant the first month. And of course, I fell in love.

But all of this still doesn’t the answer the question: why do people have kids. I mean, I didn’t have any good reasons to have children or get pregnant while I was still in college and planning to follow the path to become and English Professor.

So I thought about it some more and I came up with a few reasons:
  1. Once they’re old enough, they can get stuff for you so you don’t have to get up and do it yourself. This is assuming they can actually find what you ask for, so this isn’t always beneficial since kids are born blind and I'm not entirely sure that the male species ever recovers their sight. Literally, my kids can’t find something that’s right in front of them.
  2. They provide an excellent source of entertainment. Kids are basically a built in entertainment system. From the first sound they make you’re just in awe that they could do anything so wonderful as that little coo.
  3. They say ridiculously adorable things. Like last week when we were at a store and Isaac said, “hey Isabella, when we get outside, do you want to play that game where we try not to step on the cracks?” Obviously Isabella rolled her eyes and said, “no, I don’t want to play that game” in a disgusted voice, but she’s 11 and has been kidnapped temporarily by monsters that I assume will return her loving self when she’s about twenty.
  4. Hypothetically, they’ll take care of you when you’re old. This is assuming you don’t screw up their childhood.
  5. Even though I tell the people in my house if they say, “mom” one more time I’m going to change my name or explode, I still love it.
  6. Now that they’re older we can actually do fun things like play games that I actually enjoy and have real conversations...about meth.

This list is not conclusive and I don't pretend that it comes close to answering the main question.

I never had a strong pull to be a mother. In my mind it’s hard to believe we actually signed up for this job. Kids manage to drain you physically and mentally, every single day. They are literally the neediest creatures on the planet and always need food. But we get up every morning (and for many of you, multiple times each night) and do it all over again, pray we get it right, and love them as deeply as one can possibly love another.

Sunday, October 8, 2017

In Defense of the Medical Necessity of Chewing as Directly Denied by Aetna

In Defense of the Medical Necessity of Chewing as Directly Denied by Aetna

Sierra Hampl


Background: The patient, Isaac Kohn, is dependent on a soft diet (SD). This document is his mother’s defense that an inpatient feeding program is medically necessary for Isaac (and any other child) to learn how to chew. Isaac has been in outpatient feeding therapy since he was nine months old. Prior to his current inpatient intensive feeding program at The Children’s Institute he was admitted at age six to wean from the feeding tube. At the time of admission, Isaac was one hundred percent dependent on the feeding tube for all caloric intake. Upon completion of a five week inpatient intensive feeding program, he was discharged with a one hundred percent success rate of oral feeding in the form of formula and pureed foods.
Results: Based on a thorough review of medical journals, chewing, otherwise referred to as mastication, is vitally important to the maintenance and/or growth of spatial memory and cognitive function, oral health, development of the central nervous system, sensory input, social health, quality of life, growth of maxillofacial tissue, cortical blood flow, and hippocampus-dependent cognition. Additionally, the research shows that mastication aids as a stress reliever. Those who lack the skills required for mastication or have never been taught how to chew due to a complex medical history, have higher stress levels and are more at risk for mental health disorders.   
Conclusions: In reference to many medical and dental journals, this article will defend the medical necessity of learned mastication particularly within the setting of an inpatient intensive feeding program when outpatient therapies have documented a lack of progress. Due to a complex medical history, some pediatric patients have been denied the critical stage at which they wean from a liquid diet to a solid diet. The result is that any given child in this situation has a decreased quality of life in addition to decreased development of the central nervous system, sensory input, social health, growth of maxillofacial tissue, cortical blood flow, and hippocampus-dependent cognition. It is medically necessary that these children have insurance coverage of outpatient feeding therapists and when outpatient therapies are not effective, that insurance recognizes the medical necessity of mastication and allows patients access and coverage of an inpatient intensive feeding program.

The patient in this article is named Isaac Kohn. Isaac was born on 4/13/10. There was nothing unusual about his gestation and his birthweight was normal at 6 pounds 15 ounces. However, shortly after delivery he was diagnosed with Severe Metopic Trigonocephaly Craniosynostosis. At six months he had a Major Craniofacial Reconstruction with Orbital Lobe Advancement which was performed by Dr. Gosain at University Hospitals Rainbow Babies and Children. This surgery took twelve hours. Isaac stopped breathing after being transferred to the PICU and was reintubated. That night he fought the breathing tube and his arms had to be strapped to the hospital bed. I believe this trauma has significantly impacted Isaac’s feeding issues over the last seven years.

In addition to the post-op trauma, and four additional surgeries, at fourteen months of age, genetic testing results showed a deletion on the short arm of the ninth chromosome, a syndrome called, 9p-.

At nine months old, Isaac was severely FTT and he was referred to the pediatric feeding program at The Cleveland Clinic. During this program, mainly consisting of forced feeding, the family was able to delay the placement of a feeding tube. Unfortunately, Isaac’s feeding did not improve during the feeding program and his progress declined which then forced the decision to place a g-tube. The family took a few months off of feeding therapy in order to adjust to the g-tube and a new feeding schedule. However, since the goal has always been for Isaac to eat orally, the family pursued feeding therapy at Akron Children’s Hospital. Isaac had been attending feeding therapy weekly at ACH with an SLP for approximately one year when that SLP determined that she was no longer able to treat Isaac due to his complex oral aversion. The family then sought out an OT familiar with feeding therapy at ACH, who treated Isaac for two years with very minimal success. Eventually it was determined that due to the nature of his complex oral aversion, a different feeding therapist would have to be sought out. The family then found a new OT specializing in feeding therapy at The Cleveland Clinic, who did not subscribe to forced feeding as did the previous Cleveland Clinic program. During his years with this OT, who is also his current outpatient OT at this time, Isaac was able to make minimal progress in the form of playing with food and allowing food to touch his lips. In 2016 it was determined by Isaac’s therapy team that outpatient therapy could not meet the needs of his complex oral aversion. In April 2016 Isaac was admitted to the inpatient intensive feeding program at The Children’s Institute of Pittsburgh. Isaac entered the program taking 0% orally and after five weeks in the program he was discharged taking 100% of his caloric needs orally in the form of formula and purees. This was a monumental success and showed the value of an interdisciplinary team approach along with daily intensive therapy as the only way in which to meet the complex needs and overcome the severe oral aversion Isaac had lived with for six years. As stated, Isaac was discharged after five weeks of the inpatient program and moved directly to outpatient therapy in order to maintain his new feeding goals. At this point the g-tube was only being used for Zoloft which was prescribed while at TCI where he was diagnosed with anxiety and obsessive compulsive disorder, both of which were largely contributing to the complexity of his oral aversion.

At the time of this article, Isaac has been attending weekly outpatient feeding therapy for the last fifteen months. It has recently been determined that outpatient therapy cannot meet the complex needs for Isaac to move from his dependency on a soft diet, mainly consisting of formula and yogurt, to a solid food diet. Therefore, we have petitioned for a second admission to the inpatient intensive feeding program at The Children’s Institute of Pittsburgh so that Isaac may learn how to chew.

Initially, Aetna denied TCI’s pre-authorization for the inpatient stay. Furthermore, TCI requested a peer-to-peer review of Isaac’s case and he was denied again for the program despite the argument that Isaac’s oral health, quality of life, and failure of progress during outpatient showed that an intensive feeding program would significantly improve Isaac’s ability to learn how to chew. Aetna’s denial stated:
Coverage for this service has been denied for the following reason(s):

We reviewed information received about your condition and circumstances. We used the MCG criteria for Recovery Facility Care. Based on MCG criteria and the information we have, we are denying coverage for the requested admission. You do not meet all of the following admission criteria: (1) you need intensive skilled nursing services, (2) you need two or more therapy types (such as physical, occupational or speech therapy), and (3) you need and are fully able to fully participate in at least 15 hours of therapy a week (such as three hours per weekday). Treatment could be provided at a less intensive level of care or in a less intensive setting.

(Medical Necessity Denial) This coverage denial was based on the terms of the member’s benefit plan document...The plan does not cover services that are not medically necessary. (Page 1 of 8, Member Services Denial)

I refute the denial on the grounds that historically Isaac’s inpatient care is successful whereas outpatient care has not been able to meet the needs of his complex oral aversion. As related to (1) Skilled nursing is important when adjusting food volumes as these need to be closely monitored by the patient’s input and output in addition to weight changes; skilled nurses are all necessary for  monitoring changes as psychiatric medication is adjusted so the patient’s mental health is not negatively affecting progress in the program. (2) Upon admission it has been determined that Isaac does need two or more therapy types. He is daily seen by physical, occupational, and speech therapy. (3)Isaac is more than able to fully participate in more than three hours of therapy per day and notes regarding his inpatient stay will show that he is tolerating all of the therapy services currently provided by TCI. Due to the intensive and interdisciplinary nature of this program, he is making progress.

Isaac’s dentist, physicians, and therapy team firmly believe in the medical necessity and social importance of chewing. Numerous studies have used mice to show the medical necessity of chewing; health-related quality of life (HRQOL) articles have shown the disparity in one’s life when due to a complex medical history they do not have the ability to pursue age-appropriate activities or self-care. One must also consider how a lack of mastication and decreased HRQOL will impact the livelihood of a pediatric patient as they develop into an adolescent and adult. The studies report several findings related to loss of HRQOL as associated to oral health, mental health, and social health. Additionally, reports confirm a susceptibility to early memory loss, and delayed cognitive function.


The vast majority of animals and humans are able to chew their food; however, some children are not born with the ability to take food orally and later, as is the natural process of growth, wean to solid foods. Solid foods require the ability to chew or rather, masticate. This is the process in which the teeth, tongue, and facial muscles perform the first step in aiding the body in nutrient digestion (1). Without the ability to chew, one must rely on a soft diet (SD) or a feeding tube. This is the reality for my son, Isaac Kohn, who was born with a genetic anomaly called, 9p-. Isaac has a complex medical history which has required several surgeries mainly focusing on the craniofacial area. Isaac’s genetic anomaly is very rare, occurring in approximately three hundred people worldwide. In addition to Isaac’s genetic anomaly, he suffers from anxiety, OCD, and I believe trauma from his past surgeries, all of which I feel directly relate to his feeding issues. Isaac is currently seven years old, and the research shows that “mastication has been shown to promote and preserve general health, especially the cognitive function of the brain, beyond its primary functions of food intake and digestion” (7); Furthermore, “the form of food fed to infants during the growing period after weaning is very important for the development of the maxillofacial area and the acquisition of stomatognatic functions” (6). Isaac is still in a period of growth thus it is important he acquire the ability to chew so that we prevent the need for another craniofacial surgery.

Aetna has denied the need for an inpatient intensive feeding program in stating that chewing “is not medically necessary”; however, the research refutes this stance due to the reasoning that mastication preserves general health, maintains cognitive function, physical, and social health all of which are important to one’s quality of life (1, 3). We were able to win an appeal against Aetna; however, after two weeks in the inpatient intensive feeding program, our stay is up for review with Aetna. The physician and therapy team providing Isaac’s care feel that he needs two to three more weeks in the hospital in order to make enough progress to discharge to his outpatient therapist. We feel that without furthering his opportunity for progress here at The Children’s Institute, Isaac’s quality of life, health, and stress will be negatively impacted by decreased mastication.  

Mastication as it relates to oral health
Mastication is remarkably important to one’s oral health and “development of the maxillofacial area (6). As stated by Fukushima-Nakayama, et al: “Oral health consists not merely of the state of being free from oral diseases; oral functions, including mastication and swallowing, are indispensable for oral health throughout the course of our lifetime. In particular, mastication is necessary not only for food ingestion by forming alimentary bolus and swallowing but also for promoting and maintaining the memory function [...] studies have indicated that higher brain functions such as memory and learning function are significantly impaired by masticatory dysfunction as a result of periodontal disease, [and] tooth extraction” (2). Isaac’s dentist has already made us aware of the negative outcomes if Isaac has to remain on a soft diet. We are told that he is at a higher risk of periodontal disease and dental caries; increased calculus; gingival inflammation; and decreased enzymes that lower oral bacteria.

It has been shown in experiments performed on rodents that despite their SD they are able to maintain weight and eat the same amount of food; nonetheless, “the loss of functional teeth for months impairs digestive and absorptive function by altering the maxillomandibular relationship and by reducing secretion of saliva and gastric acid” (7). Though the rodents were able to maintain their weight on a SD, “the weight of masticatory, masseter, and temporal muscles, which are essential to jaw closing, was lower in the mice fed with SD than with ND. [...] These results indicate that reduced mastication impairs the growth of maxillofacial tissue but not the whole body” (2). Researchers have also found “that reduced mastication induces micrognathia. Micrognathia can lead to malocclusion, which can cause further reduction in masticatory stimuli, establishing a negative cycle in the growth period” (2). At age seven, Isaac is at a critical stage of growth, and everything must be done to further the growth of his jaw prior to the intervention of orthodontics and potentially surgery. With the interdisciplinary and intensive approach of the inpatient feeding program, we have a non-surgical approach for Isaac’s health. Additionally, as with the rodents used in the experiment, my son is able to maintain his weight, and gain weight on a SD. Aetna also argued that Isaac is not FTT so he does not need the ability to chew since his SD is meeting his caloric needs. However, there is so much more to consider when looking at masticatory dysfunction.

One must also look at the vast number of sensitive neurons connected to the oral cavity that “are activated during mastication [...]. The accumulating evidence suggests that sensory feedback from the oral cavity plays an essential role in maintaining cognitive function in the hippocampus” (7).

Mastication as it relates to the CNS, hippocampus, spatial learning, and memory functions
I admit to being surprised by the medical impact of a masticatory dysfunction. I can see why one might believe it is not medically necessary to chew one’s food; however, upon reading any of the referenced medical journals it becomes clear that, “research in animals and humans has shown that mastication maintains cognitive function in the hippocampus, a brain area important for learning and memory. Reduced mastication, an epidemiological risk factor for the development of dementia in humans, attenuates spatial memory and causes hippocampal neurons to deteriorate morphologically and functionally, [...] Active mastication further improves the performance of sustained cognitive tasks by increasing the activation of the hippocampus and the prefrontal cortex, the brain regions that are essential for cognitive processing. (7)

By studying rodents with the loss of molars or simply feeding them a long-term soft diet, it has been shown that “these rodents are less able to learn and to memorise” which “suppresses the overall learning function of the hippocampus” (7). Not only is “regular sensory stimulation from the masticatory organ” important due to its effect on “hippocampal neurons, which are essential in the learning process” but it has been shown that with those same rodents, when able to regain masticatory function, either through dental work or a move to a regular diet, they were able to recover their learning ability (7). This gives me hope that any damage from delayed mastication is reversible.

It has been suggested in the study of rodents, that there is a link between mastication and hippocampal function. “Recent studies using functional brain imaging support the hypothesis that mastication enhances brain function, [...] there may exist some mastication-specific neuronal mechanism contributing to the maintenance or the improvement in learning and memory functions” (7).  Further study of mice shows that “a soft diet suppresses hippocampal neurogenesis, while subsequent hard diet feeding improves neurogenesis” (1). It appears that the brain requires the ability to absorb and process more than one sensory input to the cortical regions connected with the hippocampus and “the PFC is one of these cortical areas, and it plays an especially important role in learning arbitrary associations between sensory cues and determining voluntary actions to accomplish a task. As both animal and human studies indicate that the primary motor area for the face undergoes neuroplastic changes in association with oro-facial motor learning or an altered oral environment, mastication might modulate the PFC as as the hippocampus to improve cognitive function” (7). It has been collectively shown in the research that “reduced mastication was shown to result in neuronal dysfunction, reducing neuronal activity and synapse formation” (2).

Mastication as it relates to stress and mental health
Have you ever wondered why you reach for a bag of chips, or bite your nails, or clench your teeth when you feel stressed? “Stress-related disease has become a global health problem. Mastication is an effective behavior for coping with stress, likely due to the alterations chewing causes in the activity of the hypothalamic-pituitary-adrenal axis” (3). Thus, studies show that “animals provided the opportunity to chew or bite wooden sticks during immobilization or restraint stress exhibit decreases in stress-induced plasma corticosterone levels and attenuated HPA axis and autonomic nervous system responses to stress, which helps to prevent the stress-induced formation of gastric ulcers, deficits in spatial learning ability, and bone loss” (3). The more one is exposed to stress the more likely they are to exhibit anxiety and mood disorders (3). It would seem that someone who is born with a genetic anomaly and regularly faces challenges beyond their control would be exposed to more stress than the ordinary individual. The inability to keep up with one’s peers seems like it would cause a great amount of stress as one develops into an adolescent. An individual such as Isaac, who is able to learn along with his peers in a typical classroom, but is not able to eat along with his peers due a severe masticatory dysfunction and the need for a specific, pureed diet most of which is reliant on formula, would feel an immense amount of stress as this major difference affects his social and health-related quality of life into adolescence and adulthood.

A study by Nose-Ishibashi, et al, examines the relationship between a soft diet and how it potentially increases a vulnerability to mental disorders in writing, “mastication is one of the most important oral functions, and the period during which mastication is acquired overlaps with the term of rapid development and maturation of the neural systems. In particular, the acquisition period after weaning is related to the potential onset of mental disorders. [...] Compared to mice fed a hard diet, soft-diet mice showed behavioral impairments, including decreased home cage activity, increased open field test activity, and deficits in prepulse inhibition” (5). In terms of Isaac’s case, he is already diagnosed with anxiety and OCD and is under the care of a psychiatrist and a psychologist at The Children’s Institute. With the interdisciplinary team approach they are able to closely observe Isaac’s mental health. Due to his propensity to mental health issues, mastication seems imperative so that he has an inherent way to treat stressful situations. Furthermore, studies of the mice show that a long-term SD affect the mental developmental of mice which then increases the vulnerability to mental disorders (5). Now is the time to stave off any further mental health issues, and the development of mastication seems like a common sense approach.

The food my son is eating is not developmentally appropriate. Isaac is seven years old and relies on formula for 1200 calories of his 1800-2000 calories per day. His preferred food is yogurt, and when the family has to be away from home, he eats a large quantity of yogurt due to the stress of feeding non-preferred foods. In terms of HRQL, Isaac eats his meals in the school clinic and is unable to join his peers due to the difficult task of simply eating a puree and drinking formula.

Historically, Isaac has responded to the inpatient intensive feeding program with a one hundred percent success rate. This is remarkable considering he has a complex medical history including a severe oral aversion and was not admitted to the program to wean from the feeding tube until he was six years old. Isaac responds incredibly well to the intensive environment and due to his lack of coordination and oral motor control, he has several therapies each day to focus on the discipline of learned mastication. Unfortunately, mastication did not happen naturally for Isaac and he is at The Children’s Institute working incredibly hard to learn this vital skill to enhance his HRQL, spatial learning, memory function, and cognitive ability.

I want my children to have every opportunity to reach their greatest potential. Just because Isaac was born with special needs doesn’t mean he should be treated any less than any other individual. His outpatient therapist has already shown that weekly therapy is not enough for Isaac to learn how to chew. After only two weeks The Children’s Institute, Isaac is showing more progress than he has in the last fifteen months. This should prove to Aetna that this is working, and with a few more weeks of inpatient Isaac will reach a point where he can continue this success in outpatient treatment.

The research regarding the medical necessity of chewing is undeniable. Anyone who has read a medical or dental journal in the last ten years would be overwhelmed by the data showing the importance of mastication--not only in association with oral health, but also cognitive function, mental health, and appropriate craniofacial growth. Therefore, I request that Aetna not only extend our inpatient stay at The Children’s Institute so that Isaac can continue his progress, but also recognize for future patients that chewing (mastication) is medically necessary.


  1. Azuma, Kagaku, Zhou, Q., Niwa, M., and Kubo, K. (2017). Association Between Mastication, the Hippocampus, and the HPA Axis: a comprehensive review. International Journal of Molecular Sciences, 18, 1687.
  2. Fukushima-Nakayama, Ono, T., Hayashi, M., Inoue, M., Wake, H., Ono, T., and Nakashima, T. (2017). Reduced Mastication Impairs Memory Function. Journal of Dental Research, 96, 1058-1066.
  3. Kubo, Kin-ya, Iinuma, M., and Chen, H. (2015). Mastication as a Stress-coping Behavior. BioMed Research International, 2015 (ID 876409).
  4. McCarty, Janet, and Hasselkus, Amy (2019). Pediatric Swallowing Treatment Coverage. The ASHA Leader, 14, 3-8.
  5. Nose-Ishibashi, K., Watahiki, J., Yamada, K., Maekawa, M., Watanabe, A., Yamamoto, G., Enomoto, A., Matsuba, Y., Nampo, T., Taguchi, T., Ichikawa, Y., Saido, T.C., Mishima, K., Yamaguchi, Y., Yoshikawa, T., and Maki, K. (2014). Soft-Diet Feeding After Weaning Affects Behavior in Mice: potential increase in vulnerability to mental disorders. Neuroscience, 263, 257-268.
  6. Okihara, Hidemasa, Ito, J., Kokai, S., Ishida, T., Hiranuma, M., Kato, C., Yabushita, T., Ishida, K., Ono, T., and Michikawa, M. (2014). Liquid Diet Induces Memory Impairment Accompanied by a Decreased Number of Hippocampal Neurons in Mice. Journal of Neuroscience Research, 92, 1010-1017.
  7. Ono, Y., Yamamoto, T., Kubo, K., and Onozuka, M. (2010). Occlusion and brain function: mastication as a prevention of cognitive dysfunction. Journal of Oral Rehabilitation, 37, 624-640.

Monday, August 7, 2017

Emotional Growth

The first day of school is next week and suddenly I felt like I needed to start preparing Isaac. Last night I got into bed with him and started on my spiel about how we handle situations that make us mad and what to do if someone says something that isn’t nice. Isaac doesn't like when people bump into him, or even accidentally brush up against him--this makes carpet time and standing in line particularly challenging. He seemed to understand that yelling isn't the right path, though we’ll see how it goes when all of this is put into practice. Out of nowhere he started talking about a girl he liked at school and all about how he asked her to be his friend and that his heart thumped out of his chest when he saw her go down the slide—to show me this he joined his hands over his heart and pulled them away from his body and back in. And it dawned on me that I always pray for Isaac to have friends, or even just one buddy, because we’ve never known if he would be able to understand love and relationship the way we do. But I’m finding that as he develops he is starting to understand emotions and is expressing compassion in ways he never did before. Sometimes he even volunteers a hug which is always a special moment for me.

About a month ago, I rested my head on my arms against the kitchen counter and Isaac said, “you have a headache?” I was shocked. He’s never asked or seemed to empathize with another’s feelings or emotions. This was an incredible first. Since then he has asked me if I felt sad, and another time, if I was angry. This is really exciting progress as it shows me that his realm of understanding emotions is broadening. Perhaps this will even help him express his own feelings since to this day, when he is upset, language is the first skill to go.

As Isaac talked about the little girl who made his heart swell, I knew that I needed to start praying for his future life partner and for Isaac's sweet innocence. I think my son will be able to understand love and heartache, and passion and pleasure. It makes me happy to think that he may some day have a meaningful relationship with someone outside of our family. Since the day Isaac was diagnosed, I was saddened by what might be a lack of friendship and quality relationships in his life. But we have seen glimpses of possibility, and because relationship is central to being human, this makes me so happy. 

Monday, June 12, 2017

Maine Vacation Day 3

Today we made our way to Port Clyde and went back to the little beach at Owl's Head since we loved it so much. I'd wanted to go back to Rockland to see if the local art shop was open, but Isaac was done for the day and insisted we head back to the house. He's been super flexible on this trip, so we ended the day's adventure and came home to relax which was needed anyway.

Drift-in Beach--the tide was in so we only stopped for a few minutes.


COFFEE!!! We enjoyed a break and a cappuccino in Port Clyde:

 Back at Owl's Head Beach

I try not to get a tan. As you can see, my legs reflect the sun. Only cool people are proud of this.

I have to take pictures of myself so it looks like I was on this vacation, too.

Marshall Point Lighthouse

Maine Vacation Days 1 and 2

All I keep thinking on this trip, is that Isaac has come so far and this allows us to do some things that we used to avoid. Yesterday we were able to go kayaking as a family and I talked to Isaac beforehand about how brave he would have to be since the kayak would rock a little bit. He said, "okay, I try" and handled the whole experience beautifully. Isabella, our born explorer and adventurer, took charge of her own kayak. She had one moment of panic after discovering a spider in her kayak, but was able to work through that issue. As for me, water in general makes me anxious and I was trying not to worry about the kids drowning for most of our kayak trip, but everything went well--no one tipped over, and we all made it back to shore unscathed--except for that spider.

As you'll see in the photos, Charley is with us on this vacation. It's one of our first vacations including a dog and I couldn't be happier. Stella is at home in Ohio enjoying having the run of our house while my mother-in-law takes care of her. Charley did well on the fourteen hour drive. We tried to block him in the back of the van, but he seems to think his head should be between the driver and passenger seat and creates his own third seat (just for his head). The kids did very well and for the most part we were able to maintain Isaac's meal schedule. It's so hard to stick to that schedule when we are away from home and unfortunately, the change in his routine is causing some very frustrating meal-time issues, but that was to be expected.

We've rented a house for the week in Friendship, Maine. We share the property with the owners who are very nice and have allowed us the use of their kayaks. The following pictures are from our first morning walk to the edge of the property:

In the evening went found a little beach area where because the tide was out, we could walk out to the little island to the left.

More mud on the dog...

Isaac stayed in pretty much the same spot the whole time, but he's becoming more interested in exploring.

Random spot where we stopped to check the map on our way to Owl's Head Lighthouse.

Walk to Owl's Head Lighthouse:

Beach area where we spent a while looking for shells and sea glass. I loved this beach area. The rock formations are so interesting and I like looking at how the shadows fall along the crevices. I'll have lots of material for my next watercolor class.

Attempts for a family photo:

In Rockland. By this point Charley is tired of wandering around a small town and decided to lie down in a flower bed--oops! I went to Over the Rainbow Yarn Shop and can't wait to start some new projects with Maine-made yarn!

Outside the Andrew Wyeth Museum. I'd like to go back. We didn't have enough time to actually go in the museum.

Hike to Mt. Battie. Everyone was exhausted and sweaty since it was a very steep climb. I was worried about Isaac but he was a trooper. By this point we were all getting a little slap-happy and then a little angry. Unfortunately, even with the steep climb, we didn't make it to the top since we lost the trail. Walter went back for the car and we then drove the .5 miles left to the summit.

By this point I'm angry at Mt. Battie, and reluctantly took these photos. Isaac sat in the car and refused to get out--ha!

Everyone earned some ice cream, so we stopped in Rockport at River Ducks Ice Cream.

Ironically enough, I think Isaac is the only sleeping well on this trip. He's been snoring so loudly that Isabella has been sleeping on the couch in the living-room.