Wasted Worry

 

In May, Alex mysteriously changed his eating habits. Because he has always had a good appetite and a willingness to eat almost anything, we became concerned when he seemed to lose interest in eating foods he had previously loved. Even more concerning was the weight loss that accompanied this change of eating habits. Consequently, we took him to the doctor, who diagnosed him with thrush, yeast overgrowth in his mouth and throat that seems to plague Alex at regular intervals. Since his mouth and throat were sore, apparently only cool and smooth foods, such as coconut milk yogurt, Rice Dream ice cream, applesauce, and pureed fruit appealed to him. Moreover, he told us that some foods he had previously liked now tasted bad, which apparently was a side effect of the thrush.

After prescribing a week of the anti-fungal medication Diflucan, the doctor told us that if Alex’s appetite continued to be affected, he might want to do an abdominal CT scan to determine whether he may be having gall bladder issues. In addition, he wanted to see him again in a few weeks to monitor his weight and see if the thrush improved. The medication did help the thrush, but his appetite was still not back to normal. Fortunately, by encouraging Alex to eat foods that did appeal to him, he was able to gain back some of the weight he had lost.

When we returned to the doctor in June, he was pleased that Alex was doing better and gaining weight. Since Alex was improving, he didn’t think the CT scan was necessary, but he indicated that if Alex continued to have thrush outbreaks, he may want to refer us to an ear-nose-throat specialist who could better view what was going on in Alex’s upper digestive tract. While I was not thrilled with the possibility of Alex needing a scope of his upper GI tract, I trusted the doctor knew what was best for him and hoped that this test would not be necessary. In the meantime, he prescribed another round of Diflucan to address the residual thrush and wanted us to return in three months to check Alex’s progress.

Over the summer, Alex seemed to be getting better, as the signs of thrush improved. When Alex has thrush, his anxiety and OCD increase, and he also has acne breakouts and terrible dandruff. Fortunately, all of these symptoms subsided, and his appetite, while not back to normal, improved. Because he was doing fairly well, his psychiatric nurse practitioner took him off one anti-anxiety medication and reduced another. He adapted to these medication changes overall quite well, which was encouraging. However, he seemed to have some increased sensory issues, such as covering his ears when he heard loud noises. Perhaps his eating habits were affected, as well, with intensified tastes, smells, textures, and even sounds of foods. While we had seen some improvement with his willingness to eat a greater variety of foods, we saw a setback recently where he reverted to eating only the cool and smooth foods he preferred in May.

Knowing that we were taking him back to the doctor last week, I began to panic that the doctor would want more tests run on Alex. In case his eating habits were more mental than physical, I decided to try a new method: offering him a reward for eating. All summer long, we have been low key about his eating habits, not wanting him to feel anxious and not putting pressure on him. However, in trying to spare him medical procedures, I was willing to push him a bit to see if he might eat more. Last week, I told him that if he would eat his dinner, he could get an Italian ice at Fazoli’s for dessert.

The first two nights, the plan worked well, as he ate dinner and earned his reward. The third night, however, he became agitated trying to comply so that he could get the dessert he really wanted. The next night, he began shaking before dinner ever started, fretting about the task of eating, and I knew we needed to abandon this plan. Instead of pushing him to eat a variety of foods, I fixed him foods I knew he could eat, and he was much calmer. Apparently, his eating habits were not just a matter of stubbornness on his part, and I felt bad about pushing him to eat, even if I had his best interests at heart.

In the days before we took him back to the doctor on Wednesday, I fretted about what might be ahead of us, just as Alex had fretted about eating a few days earlier. As I worried about possible medical procedures Alex might need, or even worse, what terrible illnesses might be responsible for his lack of appetite, I knew I needed to pray and find peace. Whatever God had planned, He would see us through, just as He always has.

When Alex went to the doctor on Wednesday, the doctor was pleased with Alex’s weight gain and fortunately did not feel the need to run any tests. Unfortunately, he diagnosed Alex with another case of thrush, which would explain the decline in his appetite that had been improving a few weeks ago. The doctor also thought that the decrease in anti-anxiety medications could cause sensory issues that would impact his appetite, as well. He prescribed ten days of Diflucan followed by weekly doses to keep the thrush at bay and told us to call him in two weeks and let him know how Alex is doing.

Fortunately, this case of thrush seems much milder than the ones Alex had earlier, as his symptoms are less intense and don’t seem to be bothering him too much. Thankfully, we are already seeing improvements in just the few days Alex has been on the anti-fungal medication. We are also pleased with how the doctor is handling Alex and have confidence that he is doing what is best and genuinely wants to help Alex get well. While we hope and pray that Alex’s appetite will return to normal soon and that the thrush will disappear permanently, we know that God has a plan for Alex’s healing and that we need not worry about the details. Instead, we just need to wait and to trust that in the end everything will be all right.

“Don’t worry about anything; instead pray about everything. Tell God what you need and thank Him for all He has done.” Philippians 4:6

The Inflamed Brain

 

Obsessive-compulsive disorder is defined by the Mayo Clinic website as a common condition affecting more than 200,000 people in the U.S. per year. Those with OCD, as it is more commonly known, tend to focus on thoughts and fears that become obsessions and then attempt to deal with these upsetting thoughts by engaging in compulsive behaviors.  Statistics indicate that OCD affects approximately two percent of the general population. However, various studies show that the rate of OCD ranges from eight to thirty-three percent of those with autism––much higher than the general population.

When Alex was eleven, he was diagnosed with OCD and began taking the SSRI medication Prozac to alleviate the symptoms. In his late teens, Prozac suddenly stopped addressing his OCD symptoms, leading to extreme anxiety, and he was placed on another SSRI, Zoloft, which he currently takes daily. His primary obsession is time, and he needs to know what time it is at all times and requires a watch and schedule and calendar to keep track of time. Although medication and behavioral therapy have helped ease some of the symptoms of OCD, such as frantically searching for a clock every few minutes, he still can become unnerved if his schedule changes or if he can’t find his wristwatch.

Because of the link between autism and OCD, I found a recent article on OCD especially interesting: “Brain Inflammation Discovered in Those With OCD” published online in Neuroscience News.com on June 21, 2017. [To read this article, please click here.] This article focuses upon research published on the same date in the journal JAMA Psychiatry. The senior author of the study, Dr. Jeffrey Meyer, is the Head of the Neuroimaging Program in Mood and Anxiety at the Centre for Addiction and Mental Health (CAMH) Campbell Family Mental Health Research Institute in Canada.

This study used PET scans of the areas of the brain known to function differently in OCD, and dye was used to measure the activity of immune cells (microglia) found in inflammation. This research discovered for the first time that brain inflammation is much higher in people with OCD than in those who do not have OCD. Specifically, those with OCD had greater than 30% higher brain inflammation. Noting the significance of this novel research, Dr. Meyer stated: “This finding represents one of the biggest breakthroughs in understanding the biology of OCD and may lead to the development of new treatments.”

While inflammation and swelling help the body to heal from infection and injury, this immune system response can also be harmful. In addition to discovering the link between brain inflammation and OCD, Dr. Meyer also found in an earlier study that brain inflammation is elevated in people with depression. Moreover, some researchers have suggested that autism is linked to inflammation of the brain and nervous system. Consequently, the link between mental health disorders and brain inflammation indicates the need for new methods and medications to treat these conditions.

Currently, the most commonly used medications for OCD include SSRI medications to ease depressed mood and anxiety, anxiolytic medications to relieve anxiety and tension, and antidepressant medications to prevent and relieve depression and elevate mood. However, these current medications do not help one third of those dealing with OCD. This study indicates that additional research needs to be done to develop low-cost tests, perhaps in blood markers, to identify those OCD patients with brain inflammation who would respond to treatment addressing the inflammation. Additionally, the study suggests that medications used in other disorders for brain inflammation might be helpful in treating OCD.

Another important discovery in this research is the connection between brain inflammation and stress response. Approximately ninety percent of those with OCD engage in compulsive behaviors in attempts to lessen their obsessions. Those who tried to avoid engaging in compulsions experienced great anxiety and were found to have the highest levels of inflammation in one brain area. Consequently, stress appears to play a role in brain inflammation. As Dr. Meyer notes, “Work needs to be done to uncover the specific factors that contribute to brain inflammation.”

Although more research needs to uncover sources and potential treatments for brain inflammation, this groundbreaking work by Dr. Meyer and his associates gives real hope for those struggling with OCD, depression, and other conditions impacted by neuroinflammation, such as autism. Not only might they find better ways to treat the inflammation in the brain that impacts thoughts and behaviors, but they also may be getting close to finding the causes of the inflammation, which may eventually lead to a cure. As I follow research like this and continue to pray for a cure for autism, I wait with anticipation for the day that Alex will be completely healed.

“Lord, my God, I called to You for help, and You healed me.” Psalm 30:2

The Mighty Pen

 

Like me, Alex is an avid list maker. While I typically write lists of things I need to do or buy, Alex makes lists of dates, facts, and numbers he wants to remember. Over the years, his lists have taken varied forms: individual pieces of paper scattered throughout the house with his notes, legal pads filled with jotted assorted information, and his current preference, classic marble cover composition books filled with his mostly illegible scrawl. Certainly, the composition books are a neater way to store his various lists, and I prefer them to some of the other alternatives he’s chosen at times, including using his bedroom walls to record dates or his leg as a young boy to record pi digits because he couldn’t find paper, as he told me. Through it all, he has relied upon his trusty Bic ballpoint pens that will write on nearly any surface, as we have discovered.

Although Alex has his own iPad and Chromebook, he still makes his lists the old-fashioned way, writing them by hand. Even though he can type quite rapidly and accurately, he chooses the more labor-intensive pen and paper method. Because of his poor fine motor skills and hand tremors caused by medication to ease anxiety, Alex’s handwriting is barely legible. A casual reader could make out some numbers and a few letters, but overall, Alex’s writing looks more like an earthquake seismograph than anything else. Apparently, he can read most of what he writes, though, and perhaps he likes that only he can decipher what he’s recorded in his notebooks.

As a student who learned to take notes by hand because computers were not available, I figure that my preference for writing lists by hand shows my age––someone who grew up before the technology revolution of this century. Although I’ve tried taking notes on my iPad or Chromebook or laptop, I still prefer to write my notes by hand, often edited with crossed out words or arrows not needed in computer-generated text. Besides the familiarity of doing this task in the way I was taught to do it, I’ve also suspected that I remember things better that I have written by hand.

As I always told my students, writing notes sends various inputs to the brain: hearing what was said, seeing what was written, and the feeling of the hand motion in writing. As students began using Chromebooks to take notes, I noticed that they seemed to be disconnected from what they were typing, and I questioned whether they were remembering information as well as they did when they wrote notes by hand. Recent research confirms my suspicions that writing notes by hand is more effective than typing them on a keyboard.

In an online article in Scientific American published on June 3, 2014, psychology professor Cindi May describes research regarding the impact of writing notes by hand upon memory and depth of understanding. This article, “A Learning Secret: Don’t Take Notes with a Laptop,” explains research at UCLA and Princeton University by Pam Mueller and Daniel Oppenheimer. [To read this article, please click here.] In their studies, they compared how students performed on tests, depending on whether they took notes by hand or on a computer.

Because the students could type faster than write by hand, those who used computers took more notes, often copying verbatim what was said. While this process may seem advantageous, the researchers found that this method resulted in less retention of the material because it was a mindless task. Even though writing notes by hand is slower, the students had to “listen, digest, and summarize” the material presented, leading to better retention and comprehension of the material. As Professor May notes, “While technology allows us to do more in less time, it does not always foster learning.” She goes on to state that learning is more than simply taking in and giving out data. Emphasizing the value of taking notes by hand, she concludes, “If we want students to synthesize material, draw inferences, see new connections, evaluate evidence, and apply concepts in novel situations, we need to encourage the deep, effortful cognitive processes that underlie these abilities.” In other words, to develop higher levels of thinking, the slower and lower technology of writing by hand appears to be the best way.

As I watch Alex sitting with one of his many composition notebooks, pen poised to write down things that interest him, I realize that he knows the best way to learn and remember. Perhaps his amazing ability to remember statistics, dates, and facts is related to his insistence upon jotting them in his own handwriting, making meaning of seemingly random details and building connections in his mind. Moreover, he rarely consults these notebooks as reference materials, so I suspect that just the act of writing what he wants to remember achieves precisely that purpose for him because he does have a phenomenal memory of those things he has seen and heard and written down.

Although I want to help him develop his actual handwriting skills to make them more legible not only to others but also to Alex, I don’t want to mess with success. Apparently, his hieroglyphics have meaning to him, as evidenced by his ability to remember what he has written. In his intuitive way, he has discovered that the best way to make sense of a world that overwhelms him at times is to grab a notebook and a Bic pen and jot down data that he wants to remember. Moreover, he maintains his love of learning and has discovered the best way to develop the amazing mind God has given him. As Alex’s mom and teacher, I’m quite proud of my prized pupil.

“Write down what you have seen––both the things that are now happening and the things that will happen.” Revelation 1:19

Picky Eater

 

For nearly four months now, Alex has been limiting himself to what I have dubbed “the cool and smooth diet.” Back in May, he had a mild virus that diminished his normally healthy appetite, and then a strong bout of thrush, yeast overgrowth in his digestive system that lasted weeks, made his mouth and throat sore, causing him not to want to eat. After two doctor visits and three weeks of antifungal medication, the yeast seems to be tamed, but Alex still has not returned to his normal eating habits. Instead of eating a wide range of foods that he usually enjoys, he prefers coconut milk, Rice Dream non-dairy “ice cream,” nondairy yogurt, applesauce, and pureed fruit. Along with the cold and smooth diet, he takes nutritional vitamin, mineral, and protein supplements to ensure he gets what he might be missing in this limited diet.

Although nearly seventy percent of children and adults with autism are often dubbed picky eaters, Alex has always had a good appetite and been willing to try a variety of foods. While some children with autism limit themselves to the “white diet” consisting of bread, crackers, pasta, and french fries (often because their bodies crave the glutens in them which may be bad for their digestive systems), Alex would eat a wide range of fruits, vegetables, meats, and seafood, as well as gluten-free and dairy-free carbohydrates. We considered ourselves fortunate that the only three foods he did not like as a child were broccoli, mashed potatoes, and popcorn. As he matured, he even decided that he liked broccoli and mashed potatoes, leaving only popcorn as the food he detests because it’s “too salty” (although I suspect its texture is to blame, as well).

In an article entitled “The Picky Eater” found on the Autism Research Institute’s website, Kelly Dorfman addresses four possible causes for picky eating often found in autism and other developmental delays. [To read this article, please click here.] First, she describes sensory issues and poor oral motor skills that may make eating difficult. For example, for those with sensory issues, smells, tastes, and textures of certain foods may be overwhelming. In addition, poor oral motor skills may cause children to choke or gag, making eating challenging for them. To overcome these problems, she recommends reducing anxiety, using an electric toothbrush to desensitize the mouth, and strengthening oral skills by using a straw to drink, all of which we have done with Alex over the years.

Next, she explains the role nutritional deficiencies play in picky eating. Essentially, picky eating can lead to malnutrition, which can lead to even greater reduction of appetite and even more nutritional deficiencies, creating a vicious cycle. To remedy this, she recommends giving vitamin and mineral supplements to address any nutritional needs not being provided by a limited diet. From the time he was little, Alex has always taken vitamin and mineral supplements, and we are fortunate that he has been willing to swallow pills, making giving him these supplements easier.

Another issue addressed in this article is the role of digestive problems that often plague people with autism. She explains that digestive issues can cause a child to feel uncomfortable and make them want to avoid eating. Consequently, she recommends diagnosing any digestive problems through a Comprehensive Digestive Stool Analysis and treating inflammation with proper supplements. When Alex was younger, we had this test run and discovered that he had issues with yeast overgrowth in his digestive tract, which has plagued him over the years. Whenever he has yeast flares, we treat them promptly with antifungals, but we must always be on the lookout for the symptoms that show his system is not in balance. Also, we have repeatedly asked him if his mouth, throat, or tummy are bothering him, and he insists that he feels fine.

Finally, she explains the role of medication side effects in appetite. For example, stimulant medications often given for ADHD can diminish appetite. If the medications are necessary, parents may need to be creative about getting their children to eat, providing the most nutritional meals at breakfast and afterschool when the medication has less impact on the appetite.

Although Alex is not on stimulants, I do suspect that medication may be playing a role in his recent changing eating habits. Because he has been doing so well in managing anxiety, one of his medication levels was lowered significantly, and he was weaned off another medication completely. While he has done quite well with these medication changes, remaining calm and content, I think the reduction of depressant medications in his nervous system could mean that the nerves in his mouth are reawakening. Perhaps textures, tastes, and smells are a bit overwhelming to him, so he is choosing soothing foods, hence ‘the cool and smooth diet” he’s adopted the past few months.

Moreover, I have noticed that he has also become somewhat sensitive to sounds, something he had overcome many years ago through auditory training at home with the EASe listening program. He prefers that the television be turned to a lower volume lately, and we have seen him cover his ears at times when noises bother him. Perhaps the sound of chewing is much louder to him than previously, and he is choosing foods that make no noise when he eats them. A recent trip to the dentist where his teeth were checked and found to be healthy and cavity-free reassured us that dental pain is not behind his current preferences for smoothies and smooth foods. I think that he is avoiding noisy foods right now that bother him.

While Alex’s changes in appetite have concerned us a bit, he seems healthy and happy, and he is maintaining his weight, despite changes in his eating habits. I really believe that increased sensitivity first triggered by thrush and then continued with medication changes that made him more aware of textures, tastes, and smells as his nervous system became more alert, have been responsible for his new eating habits. In addition, we know that Alex is very intuitive about what his body needs, and his wanting to eat kiwi, strawberries, bananas, peaches, and apricots daily instead of occasionally may be because he needs the nutrients in those specific fruits. He will see his primary care doctor again in a few weeks, and we will see what his opinion is regarding Alex’s current eating habits.

In the meantime, we keep offering Alex other foods we know he has liked in the past, hoping that he may be willing to eat them again. In addition, I try to make eating fun for him, offering him a plate of his current favorite foods I’ve dubbed—in honor of one of his favorite television game shows—“The Wheel of Luncheon,” which makes him grin and cooperate with eating, even when he thinks he’s not hungry. Most of all, we pray that God is restoring Alex’s health and guiding us to do whatever we need to do to help him be healthy and happy. Moreover, we know, despite our concerns, that this phase, like so many we have seen over the years, will eventually fade, and Alex will be fine.

“The Lord will accomplish what concerns me; Your lovingkindness, O Lord, is everlasting; Do not forsake the works of Your hands.” Psalm 138:8