Small Setbacks

A few weeks ago, when we took Alex for his annual physical, his doctor proclaimed him to be in excellent health. Although we suspected this to be true, for Alex had not needed to go to the doctor since his last annual exam a year ago, we were delighted to get such a good report. Nonetheless, the doctor did have one issue for Alex (and us) to work on: eating more calories per day and trying to gain about fifteen pounds. While many of us would be ecstatic to have our doctors give us that advice, we knew this could be challenging for Alex, whose metabolism and level of activity keep him naturally thin. Along with the food aversion issues he’s struggled with for more than a year and a half that caused him to lose weight, gaining weight for Alex is as difficult as losing weight is for most people.

Nonetheless, we took the doctor’s suggestion to heart, trying to find ways to get Alex to eat more and consume more calories. Fortunately, Alex made a real breakthrough around Christmas, suddenly eating a greater variety and quantity of foods, returning to his past habits of eating healthy, instead of limiting himself to cold and smooth foods. He even began asking for old favorites, such as meatloaf and shrimp, and happily devoured them. Thanking God for this Christmas miracle, we thought Alex had made a big breakthrough in overcoming the food aversion that not only made him not want to eat certain foods but also triggered panic attacks at the kitchen table.

Because his doctor understands Alex’s issues well, he recommended adding nutritional supplements, namely Ensure or Carnation Breakfast Essentials, to Alex’s daily diet. Although both of these products contain milk, to which Alex has a dietary sensitivity, I was willing to take a chance that their benefits outweighed the potential concerns about giving him milk products in these supplements. After I added Carnation Breakfast Essentials powder in Classic French Vanilla flavor to Alex’s nondairy shakes made of Rice Dream ice “cream” and coconut milk beverage and strawberries, he seemed to like the taste and was willing to drink three of these shakes every day. I thought we had found a great way to get some calories into him easily.

However, after a few days of these shakes, Alex began complaining of headaches. While I suspected the milk in the nutritional supplements might have been the culprit, I thought a few more days wouldn’t hurt. I was wrong. The more days Alex had the powdered milk supplements, the more irritable he became. Then he started complaining of stomachaches. Although I was fairly certain the source of his pain and grouchiness was milk in the doctor-recommended nutritional supplement, I knew we had to test this theory by eliminating it from his strawberry shakes. Once I removed the milk product from his shakes, Alex stopped complaining of headaches and stomachaches, and he stopped being cranky, which was probably a result of not feeling well. Consequently, we had to abandon the doctor’s simple plan for adding calories and find other ways to help Alex gain weight.

About the same time, and probably not coincidentally, Alex’s wonderful progress in eating a variety of foods was followed by a regression. Unfortunately, he wanted to return to the cold and smooth diet, favoring applesauce, dairy-free yogurt, and non-dairy pudding. Between the bad reaction to the nutritional supplements and the return of food aversion, I was terribly frustrated by these setbacks, even though they were relatively small. Knowing that Alex has an appointment in a few weeks with his doctor to monitor his weight, I am feeling pressure to make sure he puts on some pounds to show that I’m putting forth effort.

Feeling a bit defeated and disappointed, I knew what I had to do. Reminding myself of Philippians 4:13, “I can do all things through Christ who strengthens me,” I resumed my usual determination and began researching other ways. Knowing that Alex likes pudding, I found a great and simple-to-make recipe for peanut butter pudding that can easily be adapted with coconut milk. Full of calories and protein, it offers Alex what he needs. In addition, the recipe came from one of his favorite chefs, the late “Mr. Food,” whom Alex loves to imitate by repeating his motto in a deep voice: “Ooh, it’s so good!” I knew that Alex would be willing to try this new food, especially, if we both said Mr. Food’s motto before he ate it. Fortunately, the peanut butter pudding turned out delicious, and Alex loves it because it is, indeed, “Ooh, so good!”

In addition, I found a different nutritional supplement to try that uses plant proteins instead of milk proteins. While I’m not sure whether Alex will like the taste, we’ll give it a try next week. In the meantime, I keep praying that he’ll resume his healthy and varied diet, as we witnessed the week after Christmas. However, I also know that I need to remain upbeat and calm about Alex’s eating habits so that he doesn’t pick up on my anxiety and add it to his own. If nothing else, I am tenacious about making sure Alex is healthy and happy, and I won’t allow these small setbacks to deter that ultimate goal. Most importantly, I know that God has a plan for Alex, and as the Great Healer, He will make certain that Alex gets everything he needs.

“But as for you, be strong and do not give up, for your work will be rewarded.” 2 Chronicles 15:7

The Reality of Food Allergies

Last week, my friend K.C. Wells wrote a terrific piece in response to an article by Renee Moilanen entitled “Parents Should Relax a Bit About Kids’ Food Allergies.” [To read Ms. Moilanen’s article, click here.] Since K.C.’s little boy has severe allergies to milk and eggs, she justifiably didn’t appreciate Ms. Moilanen’s casual dismissal about concerns parents have regarding their children’s food allergies. [To read K.C.’s blog entry “Oh NO You Didn’t,” click here.] While Ms. Moilanen complains that trying to provide class birthday treats for her son is a nuisance when his classmates have various food allergies, K.C. points out that her son has sadly been left out of sharing birthday treats when she wasn’t given prior notice so that she could provide an allergen-free alternative treat for him to enjoy with his classmates. Moreover, Ms. Moilanen has the audacity to say that many parents of children with food allergies are simply overreacting and suggests, “I'll bet that most of the children in my son's preschool class would do just fine nibbling some foods off the allergy list.” I’m not sure what made her think that she could offer such a potentially dangerous idea; the editor’s note above her article clearly states: “Renee Moilanen is not a doctor.” As K.C. notes, her son may need to carry an Epi-pen his entire life because of the severity of his food allergies; he would not “do just fine” eating foods to which he is allergic. Furthermore, Ms. Moilanen minimizes the seriousness of food allergies when she writes, “Each year, there are only about 9,500 hospitalizations in the entire country related to children with severe food allergies.” In response K.C. wisely comments, “Maybe you think that ‘only’ 9,500 hospitalizations due to children's severe food allergies isn't that big of a deal, but I guarantee that being hospitalized was a huge deal to the parents of those 9,500 kids.”

While Alex’s food sensitivities to glutens, which are found in most grains, and caseins, which are milk proteins, are not as serious as those some children face, they have made us vigilant about removing foods from his diet that he does not tolerate well. After reading that many children with autism suffer from food allergies and sensitivities, I requested that Alex’s doctor test him to see if he had any issues with food. Using the ELISA blood test that detects antibodies indicating immune responses to food, we discovered that he followed a typical pattern seen in children with autism in that he needed to be placed on a gluten-free and casein-free diet. After more than fourteen years on the diet, Alex has done quite well by avoiding those foods that do not contain glutens and milk or milk products. The few times that he has cheated on his diet by sneaking foods he shouldn’t eat, we saw behavioral reactions that convinced us he needs to remain on the diet. Of course, Ms. Moilanen would probably disagree and simply think that we should relax and let Alex eat whatever he wants. Clearly, she’s never witnessed what happens when a teenager with autism breaks his CFGF diet by eating a paczki (a Polish jelly donut traditionally eaten for Mardi Gras); essentially it’s the equivalent of giving a kid two double espressos. As they say, “Don’t try this at home.”

In reading Ms. Moilanen’s article, two things struck me as the parent of a child with food sensitivities as well as an autism mom—her lack of compassion for these parents and children and her self-designated expertise. Unfortunately, she is not the only observer who feels confident about criticizing how other parents handle their children, even though she has no first-hand knowledge of the problems the parents are facing. Until we have walked in another parent’s shoes, we have no right to judge their decisions and actions, especially when that parent’s primary motivation is doing what’s best for the health and welfare of the child. Rather than feeling sympathetic toward her son’s classmates who cannot eat chocolate cupcakes, Ms. Moilanen resents their parents for not allowing their children to eat foods containing allergens so that her son can have the birthday treat of his choice. Perhaps a better lesson for her son would be for her to teach him compassion for these children who, unlike him, cannot eat anything their hearts desire.

While keeping Alex gluten-free and casein-free has required research, creativity, and diligence, I’m certain that he is healthier for being on the diet. Overall, he has been very cooperative about not eating foods he shouldn’t, and I think he probably eats a more varied diet than most people because he is willing to try any fruit, vegetable, or meat. As I’ve noted previously, the only foods he won’t eat are popcorn, mashed potatoes, and sometimes broccoli. Whenever presented with a new food, he will always ask, “Does this have glutens or dairy?” Although some people have sympathetically asked about the limitations of his diet and inquired as to whether he’ll always have to avoid certain foods, they have never questioned our decision as parents to keep him on the diet. Fortunately, the increasing number of gluten-free foods that actually taste good have made feeding Alex easier. Moreover, my mom and I both enjoy baking and have learned to make homemade cakes and cookies using alternatives to wheat flour and milk products. Hence, the sacrifice becomes less of a sacrifice, and we are blessed that Alex is so cooperative.

As I reread “Parents Should Relax a Bit About Kids’ Food Allergies,” I noticed a number of parents with children who have food allergies have posted comments highly critical of the article’s assertions. Obviously, these parents feel passionate about protecting their children and don’t appreciate anyone questioning their judgment. Although I’d like to think that the author could learn from the first-hand stories of these parents dealing with their children’s food allergies, I suspect from her tone that she will only resent them even more. God clearly knew what he was doing when he entrusted the children with food allergies to these parents who are willing to fight for their children and keep them safe. As for those like Ms. Moilanen who can only offer criticism and bad advice, well, “Let them eat cake!” We’re too busy taking care of our kids to care what they think.

“God blesses those who are persecuted for doing right, for the Kingdom of Heaven is theirs.” Matthew 5:10

Results

As I mentioned last week in my blog post “Modifications,” we had some blood tests run on Alex recently because he has not been his usual energetic and congenial self. Waiting for test results always proves nerve-wracking for me, wondering what the outcomes might reveal. In addition to allergy tests, the doctor ordered a thyroid profile, a complete blood count, and a comprehensive metabolic panel. Basically, if anything were really wrong with Alex’s health, something would show up in one of these tests. As the days passed until our appointment to get the lab reports, I tried to reassure myself that Alex was fine because his appetite had been excellent, even though he has acted lethargic and irritable. One evening, I even convinced him to let me take his temperature, thinking that he would run a fever if he were ill. Fortunately, his temperature was normal, which was a good indication of his overall health.

When we received the results on Friday, we were pleased to find that Alex is remarkably healthy. All of his blood counts are within normal range, which eliminated my fears of anemia or a more serious blood disorder. Thankfully, his metabolic tests showed that his major organs—heart, kidneys, and liver—are all functioning well, too. Glucose levels well within the normal range ruled out my concerns about hypoglycemia or diabetes. Another indicator of his healthy metabolism, the thyroid profile, showed that, unlike me, his thyroid and thyroid hormones all function properly. As I quickly scanned these test results, I breathed a sigh of relief that all of Alex’s numbers fell within range, and the “Out of Range” columns were completely empty. Besides these wellness tests, Alex’s allergy tests were also quite encouraging. The last time we ran food allergy tests on Alex when he was seven years old, his scores revealed that he was sensitive to a number of foods, including milk, wheat, glutens, eggs, green beans, bananas, and a few others. At that time, we put him on the strict gluten-free and casein-free diet, which he has remained on for a dozen years. Before we ran this test again, the doctor advised us that the results would probably not show sensitivity to milk and glutens because Alex has kept them out of his diet for many years. Nonetheless, I thought he might show more food allergies, but this time he only showed strong reaction to lobster, which he rarely eats, and chestnuts, which I doubt he has ever eaten. Also, he showed moderate reaction to barley, which he doesn’t eat because it has glutens, and olives, which he does eat in the form of black olives and olive oil. The good news is that avoiding these foods will be no hardship for him. Besides these foods, he showed reaction to the artificial sweetener Xylitol, the food additive potassium bromate, the pesticides heptachlor and pentachlorophenol, and the plastic additive dibutyl phthalate. Since he doesn’t consume Xylitol or potassium bromate (which is added to baked goods that are not on his gluten-free diet), we don’t need to worry about exposure to these additives. The exposure to chemicals in the air is likely inevitable and difficult to avoid, plus his current behavior is unlikely related to these substances; therefore, we’re not concerned about these findings, either. Basically, all of the data from these tests revealed Alex to be quite healthy, which was comforting.

Even though we were pleased that the results were encouraging, I was a little disappointed that we didn’t have any answers as to why he has been more listless than usual. Somehow I had hoped that we could find a simple solution to the problem that has vexed us the past few weeks. The most telling piece of information we have gained through this process—other than the reassurance that Alex is not physically ill, of course—is that he apparently no longer needs to take melatonin. During the vitamin vacation we have given him the past two weeks to see how he reacted without his various supplements, we discovered that he no longer needs melatonin to sleep, as he previously did. Perhaps he has had too much melatonin in his system, which would explain why he has been less energetic than usual. We plan to keep him off melatonin and hope that his energy level returns to normal. In the meantime, we watch for small signs of improvement and have been pleased to see him sitting upright more during the day instead of crashed on the couch. In fact, Ed commented that yesterday Alex had been the most alert and happiest he'd seen him in weeks, which was a nice change. As we wait for this phase to pass, we are thankful that our prayers for Alex to be healthy have been answered and try to maintain patience, anticipating improvements that restore him to his happy, enthusiastic self.

“Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results.” James 5:16

Food

Fortunately, Alex has always had a good appetite and been willing to eat a wide variety of food. With the exception of three things—popcorn, mashed potatoes, and sometimes broccoli—he likes nearly every type of food, even peas and carrots, which many kids (and his father) won’t touch. He especially loves shrimp and would eat it morning, noon, and night if he could. When we take him to restaurants, he frequently clears his plate and devours half of my dinner, as well. Despite his hearty appetite, he remains slender, partly because he inherited Ed’s metabolism and build, and partly because he primarily eats healthy food instead of junk food. His willingness to try new foods has been a blessing because when he was about seven years old, we discovered that he has food sensitivities and had to remove certain foods from his diet.

After reading that children with autism often have food allergies, I asked his doctor to run a blood test to see if Alex had issues with food. The test results indicated that, while he had no true allergies, he did have sensitivities to several foods, including green beans, bananas, and eggs, which were three of the foods he most frequently ate at the time. (Some children develop sensitivities to the foods they eat most often.) The bigger concern involved his sensitivities to milk and glutens, which are proteins in many grains. In Dr. William Shaw’s book Biological Treatments for Autism and PDD, he explains that many people with autism lack the ability to digest completely caseins, the proteins in milk products, and glutens, the proteins in grains such as wheat. These improperly digested bits of food, called peptides, can wreak havoc on the system. He states, “These peptides from gluten and casein are important because they react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine.” (Shaw, 126) Considering how mellow and somewhat in a fog Alex seemed at the time, I suspect that he was essentially being drugged by some of his food. His doctor suggested that we eliminate all foods to which he was sensitive for three months to give his body a rest and then reassess after that. We made the commitment to keep his diet completely free of these foods for those three months, but we found that he seemed to be almost addicted to glutens and would try to sneak bites of bread, even though we had hidden the offending food from him. Gradually, he adjusted to the new diet, and we learned what he could and couldn’t eat. After three months, we re-introduced all foods, except for those with gluten or casein. He was so much more alert and had filled out his overly thin body to a healthy weight after being on the casein-free and gluten-free diet, usually known as the CFGF diet, which seems to help a number of children with autism. We suspected that his digestive system was healthier on this restricted diet, and his brain worked better without foods that didn’t agree with him.

The CFGF diet requires learning to read food labels and nutritional information on restaurant websites carefully to make sure no sources of glutens or caseins are present. Alex has even become adept at knowing what he can and can’t eat on this diet. While he trusts that Ed and I know what is allowed, he will question others if they offer him food, asking, “Does this have wheat or dairy in it?” Even though my mom is also good about knowing what he can’t eat, I have found Alex in her kitchen reading food labels, making sure that she’s feeding him foods that are acceptable on his diet. We are fortunate to have local stores that carry CFGF foods, especially the tasty Kinnikinnick baked goods, including donuts and cookies, as well as Tinkyada pastas that have the same flavor and texture as regular pastas do. I have also learned to bake with rice, potato starch, and tapioca flours, along with rice milk and Fleischmann’s unsalted (dairy-free) corn oil margarine. Carol Fenster’s allergy cookbooks, along with the Special Diets for Special Kids cookbook, have helped tremendously in preparing delicious foods within Alex’s diet. While the CFGF diet has taken some diligence and research on our part and good cooperation on Alex’s part, we are convinced that the effort has been worthwhile because Alex has been remarkably healthy through the years.

“He gives food to every living thing. His faithful love endures forever.” Psalm 136:25