Sunday, November 25, 2012

Appearance Vs. Reality

“Appearances are often deceiving”—Aesop

In last week’s blog entry, “Temporary Bump,” I described dealing with Alex’s recent various health issues.  After fighting yeast overgrowth for months that invaded his mouth in the forms of thrush and cheilitis, we were coming to the end of a month-long run of taking the antifungal prescription drug Diflucan daily, which we hoped would finally mark the end of dealing with candidiasis. After fighting a cold for a week, I was back to feeling good and was thankful that Ed and Alex seemed to have avoided my germs. After taking Alex to the Minute Clinic on Saturday for a sore on his scalp, we believed that he had folliculitis, an infection of the skin easily treated by antibiotics. However, the appearance of a few blisters on his skin made me wonder if something else could be happening. After I posted my blog on Sunday morning, I assumed anyone who wanted to read it could access it online.  What a difference a week makes! I discovered this week that what appeared true last week was not exactly reality.

First of all, some friends and family have told me that lately they have been unable to access the most recent installments of my blog. They can see the picture and the title, but what follows is the text of the previous week’s blog instead of the new entry. Apparently, the old entries are visible, and if they wait a week until I post a new entry, they can then read the entry that did not appear the previous week. However, the newest entry again cannot be seen, other than its title and picture. Trying various browsers, I found that Google Chrome, Safari, and Firefox had no issues showing the blog correctly; the culprit seemed to be Explorer. Because Ed is more tech savvy than I when it comes to online publishing, I asked him to figure out what was wrong with the blog when someone uses Explorer. He found that many blog websites have been having issues with Explorer not showing the complete text, and fixing the problem is not a simple matter. Therefore, I recommend that any readers of my blog use a browser other than Explorer to read the entire text in a timely fashion.  However, those who are devoted to Explorer can just wait a week until the old text decides to make its appearance with the new title and picture.

Aside from the blog posting glitch, this week we finally received the results of Alex’s yeast tests that were done a few weeks ago. A swab culture of his mouth and a blood test to determine the presence of candida antibodies both came back negative, which suggests that he doesn’t have yeast overgrowth, after all. Basically three possibilities exist for these test results: false negative results, successful eradication of the yeast by antifungal medication, or something else has been causing the sores in his mouth. The nurse practitioner who prescribed the month-long use of Diflucan gave us a referral to an ear-nose-throat specialist who might be able to diagnose the problem. With the Thanksgiving holiday, Ed and I decided to wait before making an appointment with the specialist, especially since Alex’s mouth looks much better. Taking him to a doctor without any symptoms seems pointless, and we’re hopeful that he is, indeed, healed of the condition that two doctors and three nurse practitioners diagnosed as thrush and cheilitis, forms of candida overgrowth. Also, Alex has a weird fascination with ear-nose-throat doctors, whom he refers to as ENT’s, because he researched them a few years ago when he wanted to have his voice surgically altered. If we can avoid taking him to an ENT, we may be able to avoid the obsessive conversations about his desire for vocal cord surgery that doesn’t even exist. Mainly, we just pray that that the yeast overgrowth and whatever caused it is finally gone.

Last week’s appearance of a nasty sore on Alex’s scalp sent us to the CVS Minute Clinic, where a nurse practitioner diagnosed him with folliculitis, an infected hair follicle. After giving Alex oral antibiotics and treating the sore with antibiotic cream, we have been amazed and pleased how quickly this infection has healed. The evening after we took him to the Minute Clinic, we discovered a small blister behind his ear and two on his shoulder. After some Internet research and consulting with my mom, sister, and sister-in-law by phone, we diagnosed Alex with chicken pox. Moreover, we suspected that the sore on his head might have also been a blister that was knocked off accidentally and became infected. Even though Alex had the chicken pox vaccine when he was younger, apparently mild cases of chicken pox can occur in up to ten percent of people who have had the vaccine. We watched Alex carefully this week; fortunately, he had no more eruptions of pox and didn’t seem bothered by those he had, which are healing nicely. Perhaps this light case of the disease will finally give him the full immunity he apparently lacked.

After we seemed to be done with illness, a couple of days ago Alex started showing signs of the cold I had last week. Thankfully, he seems to have a mild case, as I did, but he has a little bit of congestion. With his various contagious ailments, we decided not to risk exposing anyone to whatever Alex might have that could be catching, and so the three of us spent a quiet Thanksgiving at home. Among the blessings for which we are thankful are the doctors and nurses who have helped us find ways to make Alex healthy again and for the improvements we have seen in him. I’ve heard people say that fear is an acronym for “false evidence appearing real.” Even though I first heard actor Gary Busey say that on the reality television show Celebrity Apprentice, where his behavior was a little scary, I think he makes a good point. So often, we worry about things that seem really frightening, and in the end, they are not what they seem.  I have fretted too much over various symptoms Alex has shown, and I need to remember that God is taking care of him, making sure he’s going to be fine. No matter whether Alex has thrush, cheilitis, folliculitis, chicken pox, a cold, or any other illness that looks like these conditions, he’s on his way back to health. For that, we are truly thankful.

“But all who listen to me will live in peace, untroubled by fear of harm." Proverbs 1:33

Sunday, November 18, 2012

Temporary Bump

Alex will turn 21 in less than a month, and one would think after that much time, I’d pretty much have most things figured out in this task called mothering. However, from time to time, I find myself temporarily baffled, engaged in an internal conflict as to what is the best thing to do. In these situations, Ed usually defers to my judgment, which sometimes adds to my anxiety, wondering if he really agrees with my decision or if he just thinks he shouldn’t question my maternal instincts. Anyway, one of those moments arose yesterday.

As I have written in previous blog entries, since June, Alex has been dealing with yeast infections in and around his mouth, and we have relied upon six different doctors or nurse practitioners to have him assessed and treated.  Three of the times, he became symptomatic on weekends, which meant taking him to a clinic open when doctors’ offices are not. Once we took him to urgent care when his regular doctor would not see him since he is now on Medicaid for his autism, and twice he has seen nurse practitioners at his new family doctor’s office. A couple of times, I have called the nurse practitioner who oversees his psychiatric medications on Friday afternoons to get prescriptions over the phone so that we would not have to take him to the off hours clinics. While all of these health care practitioners—all women, I might add—have been very sympathetic, compassionate, and helpful, I wish we had one consistent doctor or nurse practitioner who has seen him every time for consistency. Nonetheless, all have agreed upon the same medication for treatment, which is reassuring. This last round of the antifungal medicine, Diflucan, has spanned a month of daily doses, which Alex will finish on Monday.

A couple of days ago, I was thinking about this month of daily antifungals ending, hoping and praying that the medication had finally kicked out the yeast that has been invading Alex’s mouth. Ready for him to be healthy after all this time, I was encouraged that his mouth does look better. Then, this week I came down with a cold that was thankfully mild, which I attribute to taking Vitamin D drops. Even though my cold wasn’t that bad, I prayed that Ed and Alex wouldn’t catch the cold from me, and I faithfully washed my hands to try and keep the germs to a minimum. All week long, I have watched Alex for signs that—despite my best efforts—he has caught the cold, too. Fortunately, both Ed and Alex seem to have escaped getting the cold I’ve had.

With my cold gone, my guys remaining healthy, and the end of Alex’s yeast treatment hopefully in sight, I thought maybe things were finally on the right track health-wise. We were getting ready for a trip to Target, one of Alex’s favorite stores, to pick up a few things when I offered to help Alex comb his hair. Since he’s nine inches taller than me, the only way I can comb his hair properly is to have him sit while I stand over him. As I began combing his hair, which I had cut fairly short last weekend, I noticed a red splotch in his scalp that had not been there the previous day. Looking more closely and moving aside his hair, I saw that the red splotch was not just inflamed skin on his scalp but oozing fluid. This fiery red weeping sore was about an inch in diameter on the crown of his head. Having never seen anything like it, frankly, it scared me.

Not wanting to send Alex into panic mode, I knew better than to let him see my fears or let him know how bad the spot on his head looked. I told him he had some sticky stuff in his hair that I wanted to wipe with a washcloth, and he was agreeable. As I dabbed the sore spot, he never flinched or complained, which was a good sign. I asked him if his head hurt, and he said no, another positive. When Ed came to see why we were taking so long to get ready, I motioned him over and pointed to the sore on Alex’s head, and I suspect the facial reaction of shock he had was the same I had when I saw it for the first time. He mouthed, “What is it?”  In response, I shrugged my shoulders. However, I suspected an infection, so trying not to alarm Alex, I suggested we take his temperature, which was only slightly above normal. Nonetheless, my mother’s instinct that didn’t quite know what the cause of this sore was made me think that we needed to have it checked, so we headed for the CVS Minute Clinic here in town, where we had been pleased to get Alex such good care several weeks ago when his yeast infection flared on a Saturday afternoon.

Grabbing Alex’s medical file that contains his list of medications, our legal papers granting Ed and I authority to make medical decisions for him, and a copy of his Social Security card, I followed Alex and Ed out the door to the local CVS Minute Clinic. On the way there, questioning my decision, I asked Ed if I was overreacting to have Alex checked, but he confirmed my decision by telling me he agreed with me that we needed to have him examined. Fortunately, we didn’t have to wait at all, and the nurse practitioner was very sweet and kind to Alex and us.  After taking his temperature, pulse oxygen, and blood pressure, which were in the normal range, and listening to his heart and lungs, which sounded fine, she took a closer look at the sore on his head, which she diagnosed as folliculitis, an infected hair follicle apparently common in teenage boys and young men. She said her own sons had even had the same thing, which was comforting, especially since she commented that it looks worse than it really is. To assess whether the infection had spread, she carefully checked the lymph nodes in his neck and head, all of which were fine. To treat this infection, she gave us a ten-day run of antibiotics twice a day, and she recommended that we put antibiotic cream on his head to help heal it. The only concern we had about the antibiotics is that they can cause yeast overgrowth, which we’ve been fighting for months. She said that since he’s been on antifungals, he should be fine. Nonetheless, I will double his dose of probiotics to keep his digestive tract in good order while he’s on the antibiotics and hopefully keep the yeast from repopulating his mouth again.

Satisfied that Alex’s newest ailment had been quickly, properly, and accurately diagnosed, Ed and I were content that we had a plan to treat the infection on Alex’s scalp. In the words of Saturday Night Live character Roseanne Roseannadanna, though, “It’s always something! If it’s not one thing; it’s another.” Last night as Alex was getting ready for bed, I noticed a small spot on his shoulder, and upon taking a closer look, I saw that it’s some type of fluid-filled blister. A closer inspection revealed a similar tiny blister just below his ear. Of course, that sent me to the Internet to see what these strange blisters could be. With no definitive diagnosis, I’m hoping that the antibiotic will take care of them, as well.  If not, we’ll be headed back to the doctor yet again. In the meantime, I thank God for the compassionate doctors and nurse practitioners who have been taking care of Alex and for God’s healing that surpasses anything humans can do. As we wait, I’ll keep a close eye on that sore and those blisters, praying that they disappear quickly and making sure that I do all Alex needs for me to do as his mother and caretaker.

“For our present troubles are small and won't last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!” II Corinthians 4:17

Sunday, November 11, 2012

Forgoing Flu Shots

This fall, the urgency to get a flu shot seems greater than any other year in recent memory. Television and magazine ads stress not only how the shots protect against illness, but also how a new version offers a smaller needle, personified by a talking hedgehog who gets a haircut to show just how small that needle is. Besides doctors’ offices and health care facilities, pharmacies, discount stores, and grocery stores offer convenient opportunities for patients/shoppers to get vaccinated. Nearly every time I use the automated phone service to refill our prescriptions, I must listen to the pharmacy’s ad recommending that people get a flu shot now, followed by the times these shots are available at their stores.  

In dealing with Alex’s persistent case of thrush and cheilitis, or yeast overgrowth in and around his mouth, we have taken him to five different doctors or nurse practitioners in the past few months. In addition, he has had blood tests three times. Almost every time we have taken him for medical treatment or testing, we have been asked if he has had a flu shot this season. When we have said no, the health care provider has asked us if we would like for her to give him a shot, and every time we have said no. I then quickly and vaguely explain that he doesn’t do well with the preservative in flu shots, which usually ends the discussion. At his family doctor, I had to sign a form that we refused the flu shot and provide a reason in writing. Despite my desire to teach the staff with a more detailed explanation as to why flu shots are not a good idea for Alex, I simply wrote that he has adverse reactions to preservatives found in flu shots.

When I was younger, I was a proponent of flu shots. As a middle school teacher, I’m constantly exposed to various illnesses from my contact with students who may come to school ill or carrying germs prior to showing symptoms of illness. In addition, my internist recommended that I receive a flu shot annually because of the effect viruses can have on my chronic autoimmune condition, idiopathic thrombocytopenia. Basically, a virus can send my immune system into overdrive, causing my spleen to destroy healthy blood platelets, which are necessary for blood clotting. Since I already tend to have a low platelet count, the effects of a virus can potentially put me at risk for bleeding. Following my doctor’s advice, I would annually get vaccinated against flu. However, in those days, flu shots were not available on every corner, and I would constantly search the local newspaper every fall to see when and where flu shots would be given. One year, a limited supply of the vaccine allowed only the elderly and chronically ill to be eligible for flu vaccines, which meant that as a relatively healthy young adult, I didn’t qualify to receive a flu shot. Perhaps coincidentally or through blessings from God, that year I never became sick at all—no flu, no cold, nothing. In some years when I had gotten the flu shot, I still came down with flu, a possibility always mentioned when flu shots are given. After the year I stayed healthy despite not having a flu shot, I decided that I wouldn’t get flu shots any more, and I believe that I am healthier each winter than I was the years I received flu shots. For me, I suspect that not tampering with my body’s overly sensitive immune response enables my antibodies to react more appropriately when a virus or flu activates them.

For Alex, I have a different reason for refusing flu shots for him. When he was eleven years old, I asked his doctor if we could have him tested for heavy metals after I had read that many children with autism carry toxic loads of various heavy metals because their bodies have difficulty removing them in the detoxification process. Although she didn’t think he probably had heavy metal poisoning, she understood my concerns and agreed to run a heavy metals urine challenge test, which required that I collect his urine over several hours. When the results came back, she and we were surprised to discover that Alex had toxic levels of arsenic, lead, mercury, and aluminum. In fact, his arsenic levels were the highest she had ever seen. To remove the heavy metals, Alex had to go through chelation therapy by taking DMSA pills, a sulfur-based compound that binds with the heavy metals and removes them from the body through the urinary and digestive tracts. This process took over two years before testing showed that his heavy metals levels were in the normal range. While we don’t know the original sources of all the toxins, we suspect that thimerosal, a mercury-based preservative used in vaccinations, likely contributed to his mercury poisoning.

Even though most people in the medical community argue that thimerosal has no connection to autism, this mercury-based preservative was removed in 2001 from most vaccines children receive. However, many flu vaccines still contain thimerosal unless they are single-dose vials or syringes since thimerosal is supposed to protect multi-dose vials from contamination by bacterial or fungal growth. [I confirmed this information on the Centers for Disease Control and Prevention’s website. To go to their website on flu vaccine safety, click here.] One year when a particularly virulent strain of flu was infecting children, I asked Alex’s doctor if he should get a flu shot to protect him. She was adamant that he not receive the vaccine because of the effects of the thimerosal on him. In addition, she did not want him to have the nasal version that does not contain thimerosal because she felt the live vaccine it contains was not good for him, either. Instead, she assured me that prevention, such as washing hands and making sure he had proper nutrition and plenty of rest, would likely prevent his getting flu in the first place. If he did get the flu, she would treat him with antivirals and boost his immune system so that his body could fight the virus without the vaccine. I trusted her judgment, and Alex stayed healthy that year. Since then, I have never even considered having Alex get a flu shot, remembering her medical advice and praying God would keep him well. Thankfully, this approach has worked well, and Alex rarely gets sick. Moreover, we have limited his exposure to mercury, a known neurotoxin, which his nervous system certainly does not need.

Despite the CDC’s dire warnings of the dangers of flu, stating, “Influenza is a serious disease that can lead to hospitalization and sometimes even death,” we will not be getting flu shots this year. Even the CDC admits that the vaccine’s effectiveness depends on many factors: “How well the flu vaccine works (or its ability to prevent influenza illness) can range widely from season to season and also can vary depending on who is being vaccinated.” Certainly, I respect the decision of others to get vaccinated against the flu, but with no guarantees that that shot actually prevents flu and with the added potential dangers of thimerosal, I’m not willing to take that risk for Alex or myself. In the meantime, we follow the best advice my internist ever gave me for good health: “Plenty of rest, proper nutrition, and lots of prayer.” This sounds like a good plan to me.

“Lord, your discipline is good, for it leads to life and health. You restore my health and allow me to live!” Isaiah 38:16

Sunday, November 4, 2012

Eleven Random Things

1.  One of Alex’s new quirks is to blurt out types of foods suddenly and randomly. He’ll be sitting quietly, seemingly in deep thought, and suddenly say, “Mango,” or “Polish sausage,” or “Cupcakes.” Apparently, he spends a great deal of time thinking about food. If we ask him if he’s hungry, he’ll usually tell us that he’s not, he’s just thinking about food. Finding this random chain of thought interesting, I thought I’d similarly share some random things that have occurred to me this week, most of which have nothing to do with food—I’ll leave that to Alex.

2.  The one random thing that does have to do with food is Alex’s new love of “porridge.” I had mentioned in a recent blog entry that Alex has rediscovered the story Goldilocks and the Three Bears, which he likes me to read to him again. I think he’s amused that I can do three different voices for the bears—Daddy Bear’s deep voice, Mommy Bear’s medium voice, and Baby Bear’s squeaky voice. Apparently wanting to emulate the bears and Goldilocks, he decided that he would like to eat porridge, which took some research on my part to find what porridge is and whether he could eat it on his gluten-free, milk-free diet. The closest approximation I could find for porridge is a gluten-free oatmeal made with water instead of milk. While I wouldn’t touch the mushy stuff with a ten-foot pole, Alex seems to think he has a real treat in porridge, one of his new favorite foods.

3.  The past few weeks, Alex has taken up sleepwalking, which is a bit disconcerting because awakening to a six-foot-tall, half-asleep young man prowling in the hallway in the middle of the night is frankly creepy. Since we don’t want him tumbling down our rather steep stairs to the main floor, Ed and I have been sleeping lighter, listening for Alex to open his bedroom door and start his nightly jaunts. Fortunately, he’s docile and cooperative about being led back to bed, and all three of us are able to go back to sleep quickly afterward. We’ll just be glad when he gets past this phase.

4.  Another recent phase is Alex’s renewed interest in the Disney movie Shrek. When he was younger, Shrek was his favorite movie; in fact, I think Shrek is one of the few movies, other than the Disney cartoons that he watched when he was little, that he has watched in entirety and repeatedly. Perhaps feeling nostalgic, Alex has watched the Shrek movie trailers on You Tube many times the past few weeks. Every time, he finds them really funny, as if he’d never seen them or heard the jokes before. I think it’s sweet that just watching the short clips brings a smile to his face; how nice that something so simple makes him so happy.

5.  Harkening back to his younger days, Alex has also been asking about his childhood doctor. Although she retired a few years ago, Alex often mentions her because he felt a close bond with her during the nearly ten years she took care of him. Last month, I heard the sad news that she had passed away from cancer, which was hard for me because she had been instrumental in helping Alex deal with his various medical conditions and supporting us as his parents. She genuinely cared about her patients on a personal level and did everything she could to restore their health. I wasn’t sure how Alex would take the news of her passing, but when he asked me about her, I explained that she had gotten sick, died, and gone to heaven. Alex seemed to mull this over, satisfied that she was in a better place. However, he did ask if he could call her in heaven, and like Alex, I wish we could call her to let her know we’re thinking of her, and to be truthful, to get her medical advice occasionally.

6.  Speaking of phone calls, in my blog entry a few weeks ago “Woman’s Day Magazine,” I discussed how talking on the phone with the writer of the article, Marjorie Ingall, was amazingly easy, even though we’d never met. This week I read Marjorie’s blog entry “pam and alex” [To read her blog, click here.], in which she shares that she felt a similar comfort level in chatting with me. As she points, out, even though we differ in some key areas, we found these differences didn’t matter. We liked each other and enjoyed talking to one another. I had to laugh at her description of my blog as having “a whole lotta Jesus going on” and had to agree that I, like she, “felt comfortable instantaneously, two seconds into our first conversation.” And, Marjorie, if you’re reading this, you rock, too.

7.  One of the surprise benefits of having our family featured in the November issue of Woman’s Day magazine in the article “Caring for Alex” was that a close friend of mine from junior high who now lives in California saw the article and contacted me. Even though we haven’t been in touch for more than thirty years, we found common ground in our shared past and in our present day as mothers trying to do what’s best for our children. Guided by our faith and shaped by the difficulties our children face, we can now support each other through prayer and renewed friendship.  We’re both certain that God brought us together again; no randomness was involved here.

8.  This week, we were uncertain as to how Alex would react to Halloween and trick- or-treaters coming to our door. When he was little, Alex loved Halloween, dressing up in costumes I made for him, decorating pumpkins, and going trick-or-treating. As he got older, he enjoyed watching kids come to our house for treats. Since Ed had to teach on Halloween night, Alex and I were left to give out the goodies. Right before the designated trick-or-treat time, Alex suddenly had an anxiety attack and started saying repeatedly that he wanted “to be one, two, or three again.” I suppose he wished he were little enough to dress up and go trick-or-treating himself. Fortunately, he was able to pull himself together fairly quickly and then seemed to enjoy watching kids come to our door. It’s hard to be a little kid trapped in a young man’s body.

9.  On the other hand, Alex, who will turn twenty-one next month, participated in a rite of passage that delighted him as he voted for the President for the first time. With his interest in politics and Presidents, Alex has taken voting seriously and has participated in every Election Day since he turned eighteen and became of legal voting age. However, he had to wait until this year to have his chance to vote for the President. Watching his delight and pride in voting was truly a special event that made Ed and me proud as parents. With Election Day on Tuesday, we’ll see if his candidate wins, which will make his first Presidential election even more special.

10.  This week, we also encountered another calendar milestone that Alex usually anticipates happily—the change from Daylight Savings Time to Standard Time. With the changing of the clocks back one hour, we’re never certain how this will impact Alex’s sleep patterns. I always debate as to whether we should try to keep him awake longer or not. Fortunately, he made the decision for me, as he wound up staying up later because while he was waiting for Ed to come home from the Valparaiso University basketball game, he developed hiccups that kept him awake. He seemed not to be bothered by the hiccups, which was good, and Ed and I were surprised when he clearly asked a question (especially since lately he has limited his speech to only a few words often said quietly), “What was the score of the basketball game?” Maybe hiccups jolted his brain so that he could verbalize his thoughts better, or maybe he’s more alert when he stays up a little later. Whatever the reason, hearing him ask a good question was pleasant for us.

11.  And finally, this week, we found out that enrollment in the day program where we’re hoping to place Alex seems to be on hold even longer. Originally, we were told that they wanted a behavioral assessment and behavior plan in place prior to enrolling him. Now that the assessment and plan are nearly complete, we have been told that the day program currently has no openings.  While we still believe that this program will be good for Alex, Ed and I are convinced that the delay has a purpose to give Alex time to get better so that he’ll be successful once he gets there. I recently saw a quote that has helped me deal with my tendency to become impatient when I have to wait for things: “Faith is not just trusting God, but also trusting His timing.” I’m sure God has a plan, and we just wait for the right time.

 “And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.”  Romans 8:28