New Things

 

This past week was the first week of my summer vacation from school, but it was a busy week filled with activity and new things. Thankfully, Alex handled the hectic schedule and transitions amazingly well, which shows the progress he’s made in being more flexible and willing to try new things.

On Monday, we had an appointment with his psychiatric nurse practitioner who prescribes his medications for OCD and anxiety. This was the second time that we had visited her new office, which is conveniently located less than ten minutes from our house. Previously, we had to travel about thirty minutes to her old office, and we’re thankful that our travel time is much less now, even though we only need to see her every six months.

For this appointment, Alex did an especially good job of answering her questions instead of relying on us to answer for him. We were also pleased to tell her about the additional services that Alex receives since she last saw him in December. She had good news to share, as well, telling us that all of Alex’s blood tests looked very good. Since his lab work indicates normal levels and he is doing so well, she decided to not make any changes in his medication. After we thanked her and left her office, we took Alex to Target to pick out the things he would need for his next adventure on Tuesday.

“Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert.” Isaiah 43:19 KJV

On Tuesday, Alex not only had computer class at his day program for adults with disabilities, but he also stayed for lunch hour there with his peers for the first time, something he’d been eagerly anticipating for weeks. With his brand new lunch bag that he chose himself, he headed off for class and lunch with friends. When Ed went to pick him up afterward, they told us that he had done very well but was a little shaky, which can happen for various reasons.

After we questioned him a bit, he told us that he was a little nervous that we might not pick him up on time after lunch. Considering that he’s used to being around us most of the time, his separation anxiety was understandable. We reassured him that we will always pick him up on time, and he seemed satisfied. During his behavioral therapy session that afternoon, his therapist also assured him that he didn’t need to worry about being picked up after lunch because he could depend on us.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19 ESV

On Wednesday, his caretaker Jessica came to, as she says, “hang out with” Alex in the afternoon. Ed and I had planned to go out to lunch while she was there, but Alex seemed to be a little off. In fact, he told me that if we left, he was going to be bad for Jessica. Since that didn’t sound promising, I told Jessica that we’d stay home since I didn’t trust him. However, Jessica stepped up, assertively told Alex that he was going to behave while we were gone, and encouraged us to go, insisting that they would be fine. Since I still had doubts, I told her to call me on my cell phone if she needed anything, and I kept checking it throughout our lunch. However, she never called, and when we came home, she told us that Alex had been perfect and had not given her a bit of trouble. This was the first time that I had left him when I was concerned he might not behave, but Jessica’s no-nonsense attitude showed Alex that she was boss, and he complied.

“See, I will do a new thing, now it shall spring forth; shall you not be aware of it? I will even make a way in the wilderness and rivers in the desert.” Isaiah 43:19 MEV

On Thursday, Alex once again had computer class and lunch at his day program, and he once again got along very well. In fact, the supervisor told Ed that after lunch, she had Alex help clean up by washing dishes, wiping off tables, and running the vacuum cleaner. Not only was he comfortable having lunch there on just his second time, but he was also practicing daily living skills by cleaning up afterward. He seemed pretty proud of himself when he told us what he had done while he was there.

That afternoon, we had another new thing: instead of having his music therapist come to our home for his session, we went to the music therapist’s new office here in town for the first time. Even though we had prepared him for this change, his music therapist and I anticipated that he might need some transition time to adjust to the new setting. However, Alex sat right down at the keyboard with a huge smile on his face, ready to start the session. Afterward, his therapist told me that he had done a terrific job and didn’t seem to mind being in a new place at all. This new flexibility on Alex’s part amazes all of us who know him well.

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19 NIV

On Friday morning, we took Alex to his new doctor for a follow-up visit since he last saw her for the first time in the fall. At that visit, he was pretty edgy and didn’t seem comfortable in the new office. However, this time he was calm and pleasant, and he answered the doctor’s questions nicely. Because he has yeast overgrowth, thrush, in his mouth again, we’re going to treat him with antifungal medication, and we’re going to try vitamin B12 shots for a few months to treat his slight anemia. Even though we have done these treatments before, doing them with a new doctor feels different. However, we like her very much because she is kind to Alex and takes our concerns seriously. We pray that she will help him continue to heal.

“Be alert, be present, I’m about to do something brand-new. It’s bursting out. Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.” Isaiah 43:19 MSG

Yesterday we started Alex on a new supplement to help heal his gut and boost his immunity. After listening to an online lecture featuring a doctor who specializes in internal medicine and wellness, I found his explanation of inflammation and its connection to disease logical and fascinating. Consequently, I decided to try his recommended protocol for Alex in hopes that we can eradicate the stubborn yeast infections that have plagued him for more than three years. We pray that this new method will bring healing not just to Alex but also to others with autism. As someone who does not like change, I felt a bit unnerved as this week of new things shifted us out of our comfortable rut. Nonetheless, I have faith and hope that God is making the paths out of the autism wilderness, desert,  wasteland, and badlands, and He is taking Alex where he needs to go. Behold!

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19 NLT

Organic Acids Test Results

In a previous blog post entitled “Lab Tests” [October 13, 2013], I explained that we were having The Great Plains Laboratory’s organic acids test with yeast culture and sensitivity run to check Alex’s metabolism as well as to determine the presence of yeast in his system. After collecting his urine and stool samples, we sent the test kit off to be analyzed and waited for results. A couple of weeks ago, Alex’s doctor sent us a copy of the results from the organic acids test, a ten page document that carefully detailed and explained what the test revealed along with recommendations for treatment. Since Alex has had this test run in the past, I was familiar with the information given in the results; however, I still needed to review the potential causes for the various results that were out of the normal range. Out of the seventy-six metabolic markers tested, Alex had seventeen that were abnormal.

The good news was that after comparing the most recent test results with those from the last time the test was run in August 2004, his metabolism shows improvement over time. Essentially, even though he has some metabolic issues, his body does seem to be healing. However, the tests indicate that he still has some vitamin deficiencies, excessive inflammation, and mitochondrial dysfunction—all of which are common in autism. Since Alex has been dealing with a chronic yeast infection of his mouth for many months despite antifungal medication, we were not surprised the test indicated that he does, indeed, have yeast overgrowth in his system.

After studying the test results carefully, highlighting key passages, taking notes, and writing questions, I was prepared to discuss the results with Alex’s doctor last Monday. Once again, I was reminded how blessed we are to have found him. Not only does he possess knowledge about nutritional medicine, but he also enthusiastically pursues ways to make Alex better. As he laid the test results across the examining table and made notes on the paper liner on top of the table, he clearly explained his interpretation of the results, which confirmed my suspicions. I especially appreciated that he treated me as an equal as we discussed possible approaches to treatment, and his warm, reassuring manner made me comfortable about asking questions.

In addition to the organic acid test results, he also discussed the results of the yeast cultures and sensitivity, which detected the presence of the fungus Candida albicans in Alex’s stool, which came as no surprise, since he has had bouts of candidiasis throughout his life. What was surprising was the indication of another fungus, Rhodotorula mucilaginosa, present in his system. While I wasn’t pleased to discover that Alex has not just one but two strains of fungus in his digestive tract, I was relieved to discover that the sensitivity tests showed several antifungals to be effective on these fungi. In fact, the same antifungals that were beneficial to treating one strain were also useful to treating the other, which was good news. The natural antifungals caprylic acid and grapefruit seed extract were shown to be effective, as was Nystatin, an antifungal commonly used in children with autism who have yeast issues. In addition, all three of the prescription azole medications, fluconazole (Diflucan), itraconazole (Sporanox), and ketoconazole (Nizoral), were shown to treat the fungal infections effectively. Fortunately, Alex has taken all of these medications and caprylic acid at one time or another without any negative side effects. In the past, his yeast cultures have shown resistance to Nystatin, so I was pleased to see that we can now add that antifungal to our arsenal along with grapefruit seed extract.

After carefully considering all the test data, Alex’s doctor and I discussed the plans for his treatment. He recommended finishing this month’s dose of itraconazole and then switching to grapefruit seed extract for a month, followed by a month of Nystatin. This rotation of antifungals is a common method of treatment to prevent resistance to any antifungals. He suggested that repeating this three-month cycle would be likely, as he foresees that getting the yeast under control will likely take at least six months. In addition, we prioritized the treatment with supplements recommended by the organic acids test. Because we always do a control method whenever we do something new with Alex, starting only one new supplement at a time, I asked him which supplement we should try first. He suggested a good vitamin B complex to strengthen his immune system and to address nutritional deficiencies indicated by the test results. After that, he recommended adding the supplement CoQ10, followed by the amino acid taurine. Although Alex has taken all of these supplements in the past, we still need to monitor the effects they may have upon him, especially until we get the yeast overgrowth under control.

Along with a copy of Alex’s test results, his doctor gave me a copy of an article about amino acids he had read recently that made him think of Alex. We discussed some of the amino acids Alex has taken in the past, including GABA, taurine, glycine, and thianine, and he explained the benefits of some of these amino acids upon the nervous system, which he felt would help keep Alex calm. Our hope is that once we get the yeast under control, we can reduce the number and/or dosages of psychiatric medications Alex is currently taking and replace them with more natural substitutes to address his anxiety. I also shared some research I had found written by a doctor who has a child with autism and who treats many children with autism. She mentions that whenever her daughter has yeast overgrowth, she complains that she has “fleas” and begs her mother to call the doctor for antifungals. In addition to medication, the doctor recommends frequent Epsom salt baths to help detoxify and calm the itching, the sense of having fleas. Interestingly, Alex has been asking to take two or three baths a day and specifically requests Epsom salts in the tub. As I have mentioned previously, Alex is very in tune with his body, and I was amazed that he knew what he needed to feel better. His doctor agreed, and he recommended that we continue the Epsom salts baths when Alex requests them.

While we wish Alex could be spared of the annoyance of yeast overgrowth, and we continue to pray for his healing, we are thankful that a variety of ways exists to treat the problem so that we don’t need to worry that he is running out of options. Moreover, we’re especially grateful to have a doctor who is in this battle with us for the long haul and who understands the importance of addressing a physical issue that significantly affects Alex’s behavior adversely. Most of all, we are thankful for the healing power of God and for His guidance through medical professionals and tests so that we can help Alex be healthy and happy.

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

Lab Tests

As I explained in my last blog post, Alex has been dealing with a chronic case of thrush for over a year. Despite several trips to doctors and urgent care clinics along with a variety of antifungals, we keep trying to get rid of this stubborn candida in his mouth. Last weekend, his doctor decided to try another antifungal medication to see if it may be more effective. In addition, he has concerns that the thrush will become resistant to the one medication we know works, Diflucan. We started the new medication this week, and so far, Alex seems to be responding without any negative side effects. Hopefully, this will be the one that finally knocks out the fungus for good. However, this may be a slow process, as his doctor gave enough refills for six months of this medication.

Since antifungals can affect liver function, Alex’s doctor wanted a blood test run to make sure the medication was not causing any damage. Last Sunday, we took him to the laboratory where we have his routine blood tests done because we never have to wait long, and their staff are friendly and pleasant. As they rapidly processed Alex’s paperwork, he happily watched a football game on the big screen television in the waiting room. Within minutes, the lab technician came to get us to draw Alex’s blood, and we recognized her because she has drawn his blood for previous tests.

Before we began, we reminded her that Alex does very well with blood tests; in fact, they never seem to bother him at all. As she placed the tourniquet around his upper arm before drawing the blood, she told him that she didn’t like tourniquets “because they hurt.” I’m not sure why she put such a negative spin on this step necessary to the blood test, so I quickly told Alex that they never bothered him in the past. Before she stuck the needle in his vein, she then told him that it would “just hurt for a minute.” Alex looked at me, and I reassured him that it would only be a little stick for a second, which was true and less upsetting. As always, he did great while his blood was being drawn, never flinching or complaining. After she was finished, she placed a bandage on his arm and instructed us to keep the bandage on for about twenty minutes. I told her that Alex never bled more than a pinprick after blood tests, and she replied, “Some people tell me that, too, and then they look to see blood running down their arm.” As my mom would say, this lady was a real “crepe hanger,” finding all the worst-case scenarios in a situation. Fortunately, I know Alex much better than the technician does, and he handled the test beautifully despite her frightening comments. Thankfully, blood did not run down his arm, and he seemed unfazed by the lab technician’s warnings.

In addition to his blood tests, I had asked Alex’s doctor about running a test his childhood doctor had done several times in the past, the Great Plains Laboratory organic acids test with yeast sensitivity and culture. This test assesses intestinal yeast and bacteria and determines which medications and supplements best treat the condition. Although Alex’s doctor was not familiar with the test, after showing him previous test results, he agreed that this test would be helpful in treating Alex’s chronic yeast overgrowth. With his authorization, I ordered the test kit, which arrived on Friday. Since we had not done one of these tests for several years, I had to refresh my memory as to how the urine and stool collection were to be done to make certain the results were accurate. For example, certain fruits, namely apples, grapes, raisins, pears, and cranberries, and their juices must be avoided for twenty-four hours prior to the test. The samples must also not come in contact with water; therefore, the “nun’s cap” specimen collector I purchased several years ago for tests makes the process easier since it fits nicely in the toilet. With all the paperwork completed and instructions clear, I was ready to play amateur lab technician with the single rubber glove they sent me. (Why they don’t send two gloves has always been a mystery to me.) Now, the rest was up to Alex to produce the samples.

Just as he is a trouper with blood tests, Alex is amazingly cooperative about urine and stool tests. In fact, he gets excited about these tests, asking when we’re doing them and when we’ll get the results. I suspect that he likes the numerical statistics that come with lab reports, but he also tells me that he likes the tests “because they’re rare and special.” His enthusiasm helps me deal with the gross factor of collecting the samples, especially the stool sample that needs to be made into a slurry before sending it to the lab. I’ve discovered the old saying to be true: to paraphrase, the more you stir it; the more it stinks. Nonetheless, Alex produced a good stool sample yesterday, and I managed to produce the slurry without gagging. The second part of the test required collecting his first morning urine, and this morning, he came through with flying colors, giving way more than was needed. Once again, I collected his sample, placed it in the test kit container, and was thankful we were able to complete this test easily. Tomorrow, we’ll have it shipped to the lab and await the results and hope to gain insight into what is lurking in Alex’s gut. While I wish that Alex didn’t have to deal with the yeast overgrowth that has chronically plagued his digestive tract, I’m thankful that we have a doctor who will aggressively pursue curing him and that Alex handles lab tests fearlessly and even happily. And now, as we so often do with Alex, we just wait to see what the tests reveal.

“Search me, O God, and know my heart; test me and know my anxious thoughts.” Psalm 139:23

Divinely Designated Doctor

Yesterday we took Alex to the doctor for a follow-up appointment after two months of taking the antifungal medication Diflucan for thrush, yeast overgrowth in his mouth. As I mentioned in a recent blog entry, Alex has made great progress over the past couple of months. We believe that healing has been the main reason he has improved in many ways, including being calmer, showing mental sharpness, and speaking more clearly. Although we had hoped that two months of Diflucan would finally clear up the thrush that has plagued him for over a year, we saw signs of decline this past week since he finished taking the medicine last weekend. Instead of being content and easygoing, Alex has been irritable and obsessive. Knowing that we were taking him to the doctor, we bided our time this week and gave in to Alex’s requests to take two baths per day, which seemed to calm his nerves—and ours.

Before we left for his appointment, I asked Alex if I could look at his mouth, and he was cooperative about letting me take a peek. The inflammation, milky saliva, and telltale white spots explained his behavior this week: he has thrush again. Knowing that he was likely to be impatient if he had to wait long at the doctor’s office, I called the receptionist to see how the schedule was running. She told me that things were running on time, but a couple of minutes later, the nurse called to tell me that the doctor was about fifteen minutes behind schedule and suggested that we plan to arrive a little later so that Alex wouldn’t have to wait, which we really appreciated. Fortunately, his nurse understands Alex quite well, always turning the blood pressure/pulse monitor so that he can see it as she takes his vitals and allowing him to read her notes on his chart, knowing his interest in medicine and mathematics.

When we arrived, we were immediately taken back to an examination room, and a young man took Alex’s vitals, telling us that the nurse had reminded him to let Alex see the blood pressure numbers. After he wrote down the information, he turned the chart around for Alex to see, but as I told him, Alex had read the chart as he was writing because he can read upside down, which seemed to impress him. Thankfully, we didn’t have to wait long to see the doctor, who also understands Alex very well and interacts with him in a way that is compassionate yet never condescending. As he held out his hand to shake Alex’s hand (and as usual, Alex offered his left hand instead of his right hand), Alex showed what his behavioral therapist has taught him by shaking hands and saying, “Nice to see you,” which delighted the doctor, Ed, and me.

He then addressed Alex, commenting that he was reading a research article that made him think of Alex, and he began asking me about what amino acids Alex has taken. We discussed taurine and theanine, both of which Alex had taken in the past with some positive results, and I explained that Alex had negative side effects with tryptophan, which made him hyperactive. I also shared with him, since he is also an emergency room physician, the article I mentioned in my last blog entry about trauma surgeons using a combination of vitamin D, omega fatty acids, progesterone, and glutamine for patients with brain trauma. Since he placed Alex on three of those four supplements, he found that research interesting and recommended that we try glutamine, which he thought would be helpful. As we discussed the research we had read, he commented that he believes that divine guidance leads him to what he needs to know, and I totally agreed with him. In addition to his kindness toward Alex and us, our shared faith gives me complete confidence in Alex’s doctor.

After Ed and I explained the improvements we saw while Alex was on antifungals along with the decline we have seen this week post-antifungals, the doctor agreed that the thrush had likely returned, and his examination confirmed our suspicions. We discussed the problems of keeping him on Diflucan, which can lose its effectiveness over time, and the need to check Alex’s liver function, which the medication can affect. After consulting his electronic guide to medications, the doctor suggested another antifungal Alex had not tried, and he prescribed this medication daily for another two months. In addition, he gave us lab orders to have Alex’s liver function assessed through a blood test, which we will do this afternoon. Also, I asked him about running an organic acids test with yeast sensitivity and culture, something we had done with Alex in the past. While he was not familiar with the test, he listened intently as I explained the benefits of this urine and stool test that diagnoses metabolic issues and yeast overgrowth and additionally makes treatment recommendations. Apparently, my summary of the test was convincing, as he enthusiastically agreed that we should run this test on Alex. Consequently, I will soon be playing amateur lab technician, collecting Alex’s first morning urine sample and making a “slurry” of his stool to send to Great Plains Laboratory. Hopefully, this test, along with his blood test, will provide us with some guidance as to how to treat this aggressive yeast overgrowth.

Even though dealing with Alex's having thrush for many months has been frustrating and worrisome, we are very grateful to have a doctor who understands our concerns, works cooperatively with us in trying to help Alex, and interacts with Alex in such a positive way. For example, the last time Alex saw him, he kept staring at the doctor’s watch.  Without hesitation, he took off his watch, and with total trust, handed it to Alex to examine. Alex took a quick glance, gave the watch back to the doctor, and told him, “The date is wrong,” which made the doctor laugh, change the date, and comment on how smart Alex is. Just as Alex’s doctor believes that divine intervention leads him to the research he needs to help his patients, we believe that divine intervention has led us to him: God knew the doctor we needed to take care of Alex. Despite our concerns that the thrush stubbornly keeps coming back (or perhaps never really goes away), Alex’s doctor assures us that he’ll keep working until Alex is finally well. With a doctor who inspires confidence like that and who relies upon God's guidance, we know that healing is coming, and we anticipate that blessing eagerly.

“For since the world began, no ear has heard and no eye has seen a God like You, who works for those who wait for Him!” Isaiah 64:4

Normal

A common expression autism parents hear is the saying, “Normal is just a setting on the dryer.” Because life with autism is often anything but normal, this quote is intended to offer comfort, indicating that the concept of “normal” is often overrated. Although we wouldn’t trade Alex for the world, we often long for the normalcy of life that autism frequently denies us. Especially in May and June, I have to fight my feelings of jealousy toward people whose children are “normal” when I see their pictures on Facebook enjoying proms, graduations, weddings, sports, and vacations. Certainly, we are grateful for the progress Alex has made, but human nature makes us wish for an easier life, not just for Ed and me, but for Alex, as well.

This week emphasized the value of normal when we took Alex to the doctor for his annual physical. Since Alex receives disability benefits from the state, we must have a doctor assess his status and health each year. On one form, the doctor must confirm Alex’s disability as a diagnosis of autism with impulse control disorder and obsessive-compulsive disorder. These conditions qualify him as having a developmental delay, something that strays from the norm. On another form, his doctor must assess his physical health by checking a box marked N for normal or AB for abnormal for each body part or system. Thankfully, the doctor was able to mark N for everything for Alex, who is generally quite healthy, except for neurological and speech, which he marked as AB, or abnormal, with an asterisk “due to autism.”

In addition to filling out the forms we needed, Alex’s doctor went over recent test results with us. Because of the various medications he is taking, he needs to have blood tests every few months to monitor any possible side effects. Not only are we thankful that Alex always complies nicely with having his blood drawn for the tests, but we are also pleased that his test results always come back in the normal ranges, indicating that he is healthy and that the medications do not seem to affect him adversely. His most recent tests revealed that all of the results were once again in the normal range, which pleased us. In addition to the blood tests, we had also done a 24-hour urine collection to test whether Alex had any heavy metals in his system. When he was eleven years old, we discovered through urine testing that Alex had high levels of the toxins arsenic, mercury, lead, and aluminum. This led us to two years of chelation therapy with the medication DMSA, a sulfur-based compound that rids the body of toxins. Since we had not tested him in several years, we thought that checking his levels would be wise to see if any toxins had built up after completing chelation. Once again, we were relieved to discover that all of his levels on this test were normal, as well. The only thing that marred this good news that everything was normal was Alex’s abnormal frustration with having to wait in the doctor’s office, which is part of our life with autism.

Aside from the medical tests that indicate Alex is doing well in spite of autism, we have recently seen improvements in his thinking and language that suggest his brain is working better. Because his medications that help him deal with anxiety and aggression keep him sedated, Alex has not been as sharp mentally as he used to be. However, we have noticed that he seems to be regaining his perceptive skills lately, making comments on things he notices and asking interesting questions again. In the past, Alex liked to make proclamations that something was rare, and he has started doing this again, saying things when we’re driving, such as, “It’s rare for the speed limit to be 25 [miles per hour]; it’s usually 30 or 35 or 20 in a school zone.” Another day this week as he was looking out the window watching cars go down our street, he commented, “Purple cars are very rare.” In addition, he has been asking unusual questions, including, “Can we get some food from a gas station?” Food has been a big topic with him this summer, as anytime we go someplace, he will ask, “Will there be food?” He also makes very specific requests for food he’d like to eat, including asking me recently to make shish kebab for dinner. While these comments may not seem remarkable, to us they represent a return of the alert and observant Alex who was overwhelmed by anxiety and then sedated by medication for many months. During those difficult times, we missed his observations and comments that revealed his unique perspective on life. Once again, we begin to see how his mind works, and we welcome the return of the bright, funny, and clever person Alex truly is. For us, that is the normal we know, and while we aspire to the more traditional concept of a normal life, we feel blessed to regain what we thought we had lost and appreciate the comfort of the familiar as we hope for even better.

“Then you will have healing for your body and strength for your bones.” Proverbs 3:8

Acts of Kindness

 

In March, I wrote a blog entry entitled “Should Autism Be Neither Seen Nor Heard?” describing incidents reported in the media where children with autism and their parents had been treated badly in public places because of the children’s behavior. Fortunately, we have not had to face scorn in public, partly because Alex likes going places and generally behaves well when he is out and mainly because Ed and I make certain that his behavior never disturbs others. Keeping Alex close at hand, watching for cues that he’s becoming overwhelmed, knowing where all exits are located, and moving rapidly to remove him from others’ view should he become agitated, we never want him to bother other people. Nonetheless, we would hope that other people would be patient, tolerant, and understanding should he have a sudden meltdown, knowing that he really can’t help his behavior when anxiety overtakes him. Moreover, we would do everything in our power to calm him and remove him from the situation so that he wouldn’t be disruptive to other people.

To avoid ever having a public incident, parents whose children have autism would have to stay home all the time, which would not be conducive for their learning social skills and proper behavior in public. While taking these children places may involve some risk, we won’t know if our kids can handle situations until we test them. What has been a pleasant surprise for Ed and me is that not only have we found people who are tolerant of Alex’s differences but are also genuinely kind and willing to be especially thoughtful in their dealings with him.

Last week, we took Alex to the doctor because he has another outbreak of thrush, or yeast overgrowth in his mouth. We have only been seeing this doctor a few months, but we have been especially impressed with how kind he and his staff are to Alex and us. Knowing that Alex is fascinated with numbers and vital statistics, the nurse always tells Alex his weight, temperature, blood pressure, and pulse and tells him what they were the last time he was there. In addition, she makes certain to show him the monitor screen for the electronic blood pressure cuff so that he can watch the numbers change as it registers. While that gesture may seem small, it means a great deal to Alex, and even more to us as parents who appreciate someone making Alex happy. Similarly, the doctor has such a wonderful bedside manner with Alex, explaining everything to him as he exams him and speaking to him in a gentle yet never condescending manner. Not surprisingly, Alex actually looks forward to going to the doctor because they have made appointments such a pleasant experience for him.

Yesterday we took Alex to a Celebration of Wildlife at a nearby county park. Every weekend we try to find outings for him as a way for him to get out of the house, be around other people, and learn new things. The main attraction at this event was a large tent with several animal displays from veterinarians, animal rescue groups, and a zoo. The highlight for Alex was seeing turtles and tortoises, which are among his favorite animals. At one exhibit, he was intently observing a turtle when a young woman asked him if he would like to touch the turtle. His eyes lit up, and he shyly told her yes. She picked up the turtle, assured him it was very nice, and encouraged him to touch its shell. He was pleased to have this opportunity, and we were impressed by how sweetly this young woman spoke to Alex and allowed him to have a special hands-on experience. After that, she offered to let him pet a lizard from the display, also assuring him that the animal was nice, nothing to be feared. As she gently encouraged Alex, he also touched the tail of the lizard, which he found interesting. While Alex was impressed with the animals, I was impressed with how naturally she interacted with him and appreciated how kind she was to make his experience at the exhibit more special. A few minutes later at another exhibit, an older gentleman observed Alex happily watching small alligators swimming in a wading pool at his display and offered to let Alex touch one of them if he would like. When Alex indicated that he wanted to touch the alligator (which had its mouth duct taped shut so that it couldn’t bite), the man kindly reached into the pond to get the alligator and hold it for Alex to see and touch. Noticing that Ed had a camera, the man also offered to let Alex take a picture with the alligator, which was a thoughtful gesture. Like the young woman, he was friendly and encouraging with Alex, but he did so in a way that was genuinely kind, a seemingly effortless gesture to make Alex happy.

Whenever people are kind to Alex, they endear themselves to Ed and me and reaffirm a faith that the majority of people are good. While not everyone may realize that he has autism, I’m sure that most people realize that Alex is different from observing him a few minutes. When people are willing to look past his differences and reach out to him with genuine kindness, I hope they feel the joy they bring him and the gratitude Ed and I feel for their efforts. Of course, Ed and I make certain that they know how much we appreciate their kindness by having Alex thank them for their gestures and always expressing our gratitude to them, as well. While their actions bless us, I hope that their interactions with Alex bless them, too, so that they might bless other children like him. I’m reminded of a line from Israel Horowitz’s play I teach my seventh grade students that is an adaptation of Charles Dickens’ A Christmas Carol: “An act of kindness is like the first green grape of summer: one leads to another and another and another.” Moreover, I hope that Alex not only appreciates the kindness of others but truly learns from their examples so that he can show others kindness, too.

“We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love.” II Corinthians 6:6

A Week in the Life with Autism

This past week began Autism Awareness Month, and many people whose lives have been touched by autism have used this time to make others more cognizant of this epidemic. For parents of children with autism, awareness involves more than wearing the distinctive autism puzzle-piece logo or lighting blue lights. Autism awareness is a way of life for us. Yesterday I read an excellent blog entry written by an autism mom who detailed a typical day in the life of her family. [To read this article, click here.] Impressed by her devotion and her willingness to share what her life is really like, I decided to try and do the same. However, I got bogged down thinking about how much time we spend giving Alex pills and fixing food for him throughout the day, as well as helping him with tasks he cannot complete on his own. Instead of providing an hourly report as she did, I decided to write about the highlights of our past week so that others can see that having a child with autism—even an adult child, like Alex—entails planning, coordinating, and supervising in ways different from those of parents of typical children. With that in mind, here is a glimpse of last week with the Byrnes.

Saturday—We had a 10:00 appointment with Alex’s new doctor, who wanted to see him a month after his last visit to see how he was progressing with the supplements he had recommended. After I explained how we had gradually phased in vitamin D, gentian violet, probiotic with prebiotic, and vitamin C over the past few weeks, the doctor carefully examined Alex. Fortunately, the yeast overgrowth in and around Alex’s mouth has improved, but he still has some thrush and cheilitis. The doctor suggested increasing the doses of vitamin C and probiotic/prebiotic and gave us a prescription for the antifungal drug Diflucan. He also noted the acne on Alex’s face and recommended a progesterone cream to decrease the inflammation and prevent secondary infection. We were once again impressed with this young doctor’s enthusiasm about making Alex healthier and his compassionate manner.

Sunday—Alex seemed pleased with the contents of his Easter basket. Since he is on strict gluten-free and milk-free diet, we always have to be creative when it comes to treats for him. Fortunately, he is a fan of Kraft Bunny Mallows marshmallow bunnies, jelly beans, and marshmallow Peeps (specifically the blue bunnies), all of which are allowed on his diet. In addition, I found him some nice paperback books in the children’s nonfiction section of Barnes and Noble on some of his favorite topics: the sun, the moon, the earth, thunderstorms, and earthquakes. While I was at the bookstore, I also found a small "computer sitter" figure of Sheldon from The Big Bang Theory, which is one of his favorite television shows, and a street map of towns in Northwest Indiana, where we live. Of course, the last thing I grabbed—the street map—was his favorite gift.

Monday—I received a letter in the mail that elevated my blood pressure from Indiana Medicaid, who provides disability services for Alex. In a previous blog entry, I explained that they had sent us a letter in January threatening to cancel Alex’s benefits because they alleged that I had “failed” to send them his financial records. After several calls to them, they discovered that they had received the information I had sent in a timely fashion, but someone had forgotten to note that in his file. Fortunately, my organization skills and tenacity prevented his benefits from being cancelled. The letter I received this week stated that they had sent us a letter in January indicating his benefits were to be cancelled, and a class action lawsuit had been filed against them because they had failed to notify people properly. Because the letter was not clearly written, I had to read it a few times before realizing that they hadn’t actually cancelled his benefits, which made sense because they have been paying for services for him the past few months. However, to be certain, I logged onto their website, looked up Alex’s files, and discovered that he was still covered. While I was relieved that his benefits were still in place, I wasn’t pleased that they had me worried and that I had to double check to make certain his status was correct.

Tuesday—We took Alex to one of his favorite places, the Target Café, for a snack of potato chips and Sprite. Ed and I have decided that outings to the Target Café provide us with a nice break, as well, since Alex happily watches people come through the store, and an added bonus for him is when small children, whom he finds especially amusing, appear. With something tasty to eat and drink and a good people-watching view, Alex thoroughly enjoys himself and smiles the entire time he’s there. We’re pleased that something so simple and inexpensive makes him happy. Besides, Ed and I are also fans of the hot pretzels they serve there, too.

Wednesday—Alex’s behavioral therapist came for her weekly session with him. Before she arrived, I did my regular inspection of our main floor to make certain that the house looked nice before she arrived. In addition, I filled out his weekly behavioral report for her, noting any issues we had observed during the past week. As usual, I wrote that his primary weakness has been speaking too softly to be heard, which shouldn’t seem like a problem. However, as she has explained to us, not everyone will be as patient as Ed and I are about having him repeat himself. Consequently, we have been working with him to make his voice audible. In addition, she and I worked together on Alex’s newest ploy, leaving in the middle of his behavioral therapy sessions to go to the bathroom. I suggested that she not even mention the topic, as he was likely to obsess on it, and I closed the bathroom door to hinder his efforts to interrupt his session. Our plan worked, as Alex only tried to leave the session once, and I told him to go back because he did not need to go to the bathroom. I think he learned that two women could outsmart him any day of the week.

Thursday—Alex’s case manager who oversees his state disability benefits came to see us to complete his annual level of care survey. The state uses this information to assess what services and funding Alex should receive. To determine his eligibility, Ed and I had to answer several questions regarding his physical mobility, his self-care skills, his self-directional abilities, and his learning skills. His case manager helped us immensely as she was able to explain the nuances of the questions and provide examples of what kinds of skills the questions intended. As usual, Ed and I were in complete agreement on our answers regarding Alex’s strengths and weaknesses. After his case manager left, Ed commented to me that this process was a good news/bad news experience. The good news is that Alex qualifies for disability funding and services; the bad news is Alex has weaknesses that qualify him for disability funding and services.

Friday—Alex was delighted to have books arrive that he had ordered from Amazon using gift cards he’d received for Christmas. He had chosen a book on winning strategies for the dice game Yahtzee, a chart explaining how to bet on the card game blackjack based upon the odds of winning, and a trivia almanac with questions for every day of the year written by one of his heroes, Jeopardy champion Ken Jennings. While he was pleased with these books, he was a little disappointed that another book he ordered had not yet arrived. Because The Handy Science Answer Book is apparently out of print, we had to order it from a specialty bookstore. Although Alex will be thrilled when that book arrives, I will be even happier since I won’t have to listen to Alex ask me if the mail has come, when I think it will arrive, and where I think the book currently is in transit. I just hope he’s as enthusiastic about that book when it finally does get here.

As I reflect back on the past week, I feel thankful that we have found wonderful people to help us with Alex. From his doctor to his behavioral therapist to his case manager, these support people have guided Ed and me with their expertise so that we can help Alex reach his full potential. Now if that Handy Science Answer Book would hurry up and arrive, I would be even more grateful.

“Tune your ears to wisdom, and concentrate on understanding. Cry out for insight, and ask for understanding. Search for them as you would for silver; seek them like hidden treasures.” Proverbs 2:2-4

A New Path

In the more than seventeen years since Alex was diagnosed with autism, I’ve found myself spending a great deal of time searching for resources to help him. Often, looking for people and methods that may help him takes tenacity and patience because those answers aren’t readily found. Other times, things seem to fall into place with such ease, and then I know the hand of God is at work in our lives.

Shortly after we discovered that Alex had autism, I began reading Dr. Andrew Weil’s book Spontaneous Healing, looking for ways to make Alex as healthy as possible. In one section, Dr. Weil discusses cranial therapy, a gentle manipulation of the head believed to improve wellness. At the end of the book, a resources section provides contact information to find practitioners who can provide the holistic approaches Dr. Weil describes in the book. After more research, I decided that I would like to try cranial therapy for Alex and wrote a letter to the address provided in the book requesting a referral.

When I received their response, I was pleased and surprised to find a local doctor of osteopathy who did cranial therapy with her patients. This began a decade long relationship with an outstanding doctor who worked cooperatively with us to help Alex. With her expertise in nutrition, chelation, and cranial therapy, she provided Alex with the care he needed to deal with his food allergies, heavy metals toxicity, and other health issues related to his autism. When she had to retire a few years ago due to her own health issues, we felt a terrible loss, and when she passed away last fall, we felt deep sorrow.

Without the guidance of Alex’s beloved doctor, I have been searching for another doctor who would take a holistic approach to his health and would be willing to follow biomedical methods found to be helpful to people with autism. In the past few years, we have been fortunate to find compassionate and competent medical professionals for Alex; however, other than his psychiatric nurse practitioner and a chiropractic internist, their background with autism has seemed rather limited. Moreover, we have sensed that they were more concerned with treating the symptoms than looking at underlying causes. For example, Alex has been diagnosed six times in the past eighth months with thrush and cheilitis, or yeast overgrowth in and around his mouth. While treating the yeast with Diflucan helps the symptoms and makes them better, something is causing the recurrence of this problem. I knew we would need to get to the bottom of this problem, but I was having trouble finding a doctor who would take a more holistic approach. Feeling frustrated, I have prayed for patience and an answer.

Several days ago, I picked up a magazine advertising local business that had come in the mail a few days earlier. Thinking it was junk mail, I nearly threw it in the trash, but I decided to take a quick look. As I flipped through it, I noticed a picture of a building I recognized: the office building of Alex’s former doctor. A closer look at the ad revealed that a new medical practice had been established in that office building by a father and son who are doctors of osteopathy specializing in nutrition and wellness, like Alex’s doctor. After consulting their website listed in the ad and discovering that they offered the holistic approach I had wanted for Alex, I decided this was an answer to prayers.

Without hesitation, I called their office that Friday afternoon to see if they would accept Alex’s insurance and take him as a new patient. After confirming that they could see Alex, the receptionist was able to schedule us for an appointment for Monday afternoon. Last weekend, I felt hopeful that this new doctor would be able to help Alex, and I looked forward to meeting with him. On Monday, we were pleased we didn’t have to wait for our appointment, and I was immediately impressed by the doctor’s manner: kind, understanding, and compassionate. He interacted with Alex easily, and Alex felt comfortable with him during the examination. As Ed and I discussed our concerns about Alex’s repeated bouts with yeast overgrowth, he listened carefully and explained his ideas clearly regarding what he thought was the cause and what we could do to help Alex. Not only was he likeable, but he also inspired confidence, making us feel that we had brought Alex to the right place.

His assessment is that Alex’s immune system has been weakened, leaving him vulnerable to infections, such as the fungal thrush, the bacterial folliculis, and the viral chicken pox, all of which he has had recently. To strengthen his immunity, the doctor recommended high doses of vitamins C and D3. To address his yeast overgrowth, the doctor suggested that Alex take a prebiotic supplement in addition to the probiotic he has been taking, which will help balance his digestive system. To ease the mouth discomfort the yeast causes, the doctor recommended an old herbal remedy, gentian violet. Armed with this information, we have gradually implemented the recommended protocol, starting with vitamin D3, then gentian violet. Next, we will add the prebiotic, followed by vitamin C.

With Alex, we have learned that adding only one new thing at a time is crucial to measure its effects upon him, whether positive or negative, and the doctor wholeheartedly supported our gradual approach to the new supplements. He wants to see Alex in a month to check his progress, and we hope and pray that the next time we see him we can tell him how much Alex has improved, thanks to his help. The way things have moved quickly and easily into place with this new doctor reminds me that God is in control, and when the timing is right, He will bring the right people across our path and give us a sense of peace, knowing that everything will be all right in the end.
 

“Your own ears will hear Him. Right behind you a voice will say, ‘This is the way you should go,’ whether to the right or to the left.” Isaiah 30:21

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

Is There a Doctor in the House?

This week was the first week this summer that we didn’t have any appointments scheduled and that I didn’t have any phone calls to make. Of course, these unplanned times sometimes allow unexpected surprises to arise. As I described in a previous blog entry, “An 'Aha!' Moment,” Alex was diagnosed with a yeast infection in and around his mouth about a month ago. We’ve been treating the infection with a once-a-week dose of the anti-fungal drug Diflucan along with an anti-fungal ointment on his face. He finished the fourth and last dose last Saturday and seemed to be doing better. However, on Wednesday morning, he awoke with his tongue coated in thick yeasty substance.

Since he would be due another dose on Saturday, and we were out of the prescription, I decided to call his doctor and make an appointment for him to see if he needed more anti-fungal medicine. I thought we were fortunate to be able to see the doctor early that afternoon, but I didn’t have any idea that our plans would suddenly change.

When we arrived at our family doctor’s office, the receptionist asked for our insurance card, which I gave her. I also gave her Alex’s Medicaid card that had arrived in the mail last week with instructions to present it any time he was going for medical appointments. She told me that she didn’t think they took Medicaid, but she would check. I explained that he was still covered under our health insurance policy (since Medicaid had recommended that we keep him on our policy), and we would pay any expenses the insurance would not, as we always had in the past.

When she went to ask another receptionist about Medicaid, I heard the other one indignantly ranting how Medicaid never paid for anything, so they never took Medicaid patients. She then told me rather rudely that they would not see Alex because he has Medicaid. I explained that Alex had recently been approved for Medicaid because he was disabled, and I assured her that we still had private insurance for him, plus we would pay ourselves for what expenses were not covered.  In response, she condescendingly informed me that the doctor could not legally see Alex since he has Medicaid now; we would have to find another doctor. Annoyed by her attitude and relieved that Alex wasn’t very sick, I told Ed and Alex, who were sitting in the waiting room unaware of what was transpiring at the reception desk, that we were leaving, and I would explain why once we were in the car. Medicaid apparently necessitated needing to find a new doctor for Alex; and the receptionist’s nasty attitude made me decide that I would find a new doctor for myself, as well.

Because I wanted a doctor to check Alex’s mouth, we decided to take him to St. Anthony’s Express Care here in town, which is affiliated with the hospital where Alex stayed in Michigan City, as well as the ER in Chesterton where we took him last month when the infection erupted. Fortunately, they do take Medicaid patients and were willing to see him that afternoon. All of their staff were very kind to us, and the doctor was sympathetic about our experience about basically being dumped by our family doctor. After examining Alex, she thought his mouth was healing, but she gave us two more doses of Diflucan in case he needed them. In addition, she suggested the names of three family doctors she thought would take Alex as a patient now that he has Medicaid. Grateful for her help, we headed home with the prescription and information she provided.

That evening, I began researching Indiana Medicaid providers online and found the doctors the urgent care doctor had recommended along with the names of family physicians in two groups here in town who have a good reputation. Jotting down names and phone numbers, I planned to make phone calls the next morning to see if they were taking new patients and would accept Alex. The first group I called was not currently taking new patients, and they would not accept new patients with Medicaid. The second group was taking new patients, but they also would not accept new patients with Medicaid. The third group had two doctors accepting new patients, but they could only take new patients with Medicaid if Medicaid assigned the patients to their office. Frustrated with the lack of progress I was making, I decided to call Medicaid for assistance.

First, I called the phone number on the back of Alex’s Medicaid card, and while the woman was very nice, she recommended that I check the website, which I had already done. She then suggested that I call our local office who may be able to help more directly than her state office in Indianapolis. When I called the local office, the woman with whom I spoke was also very pleasant and apologetic that I was having trouble finding a doctor for Alex. She recommended that I call another Medicaid office in Indianapolis that coordinates services and providers. When I called that office, the man took all of the pertinent information about Alex regarding our address, phone number, file number, Alex’s birthdate and Social Security number. He then told me that he would have to speak with Alex since he is legally an adult. I explained that Alex’s autism is his disability that qualified him for Medicaid and that he doesn’t communicate well. I also explained that besides being his mother, I have medical power of attorney for him and that Medicaid has designated me as his authorized representative. Very politely, he said, “Mrs. Byrne, I believe everything you’re telling me, but because of HIPAA [health care privacy] laws, I cannot discuss your son’s case without his permission or the legal documents showing that you are his medical power of attorney.” He then gave me the information as to where I need to send a copy of Alex’s medical power of attorney papers so that he can talk to me instead of Alex.

While I certainly understand an individual’s right to privacy regarding health matters, the extent to which this law is enforced strikes me as ridiculous, especially when it comes to a parent seeking help for a disabled adult child who cannot advocate for himself/herself. Nonetheless, I will fax yet another copy of Alex’s medical power of attorney papers in hopes that we can find a doctor for him. Fortunately, Alex is rarely sick, so he doesn’t need a doctor often. His nurse practitioner’s office accepts Medicaid, so she can continue to oversee the medications that control his anxiety and agitation. Until we find a doctor for him, we’ll just plan to take him to St. Anthony’s Express Care here in town or their ER in Chesterton because we know they will treat him, and we have been extremely pleased with the care they provide. I’m sure God will provide a good doctor for Alex, but once again, we will need to be patient until He reveals his plans.

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that He has promised.” Hebrews 10:36

An "Aha!" Moment

Since Alex has been home from the hospital, one of the changes we’ve noticed is that he seems to have some loss of motor function, likely caused by the medications that are intended to keep his anxiety and aggression under control. He isn’t as sure on his feet, but more significant has been the effect upon his mouth. While Alex used to be an extremely neat eater, lately he seems to have trouble chewing and often lets food fall out of his mouth, leaving crumbs all over the table and on the floor. In addition, he has had difficulty for the first time taking pills, something he mastered at age five. This has created a new concern because he has nearly choked on his food a couple of times because swallowing appears more labored for him than previously.

Yesterday, we had a frightening experience that resolved itself quickly and led to a welcome “Aha!” moment. When Alex awakened yesterday, he was agitated, so Ed and I needed to stay with him every moment because his behavior was unpredictable. This meant that we even accompanied him to the bathroom because we didn’t trust him to be alone, even though he has toileted independently for years. After he finished, Ed and I happened to look in the toilet at Alex’s first morning urine and panicked at what we saw—instead of its usual yellow, his urine was quite dark, almost the color of iced tea. The fear in Ed’s face, I’m sure, mirrored my own, and I began to think of reasons why his urine would look abnormal.

At best, I suspected Alex might have a urinary tract infection that would cause the dark color, but I was more worried that he might be bleeding internally. This fear was intensified because Alex had two nosebleeds last week. The medications Alex is taking seem to make his skin dry, so we thought that they probably had made his nasal passages dry, as well, making them more likely to bleed. In addition, we had been giving him antihistamines for allergies, which probably intensified the dryness, so we stopped giving him those after he had the nosebleeds. Yesterday morning when Alex awakened, I had noticed that he had dried blood on his lips. At first, I thought his nose had bled some in the night, but closer inspection revealed that his nose hadn’t been bleeding; his mouth had been bleeding instead. This mouth bleeding, along with the dark urine, made us decide that we needed to take him to be checked to make sure nothing serious was wrong.

Wanting to avoid a trip to our local ER, we headed to a local urgent care facility affiliated with St. Anthony Hospital, where Alex had stayed this spring to get his medications adjusted. I figured that the urgent care would be faster and less traumatic; plus, they would be able to access his records from his hospitalization. Before we left, I grabbed a list of his medications and dosages along with our legal papers showing that Ed and I have medical power of attorney to make decisions regarding Alex’s health care, even though he is legally an adult.

When we arrived at the urgent care clinic, we were the only ones there, so I was able to talk to a nurse and doctor immediately. The doctor listened to my concerns and explained that she thought he would need to have lab work done, but they were not able to do lab work there. She told us that we would need to go to the ER instead, which was not what we wanted to do. As we were getting in the car, reluctantly headed to the ER, the doctor came running out to our car and suggested that we might want to go to their new ER facility in Chesterton, which may be faster than our local ER. Again, they would have Alex’s records, and since this ER was only a fifteen-minute trip away, we took her advice and headed to Chesterton Health and Emergency Center, affiliated with St. Anthony Hospital in Michigan City.

At the Emergency Center, the staff immediately greeted us since we were the only ones in the waiting room. As I filled out minimal paperwork because they were able to access Alex’s records, a friendly triage nurse took Alex and Ed back to an examination room where he took Alex’s vitals, which were normal. He then took us back to a very nice room in the ER with a private bathroom. The ER nurse sympathetically listened to our concerns and assured us that the doctor would see Alex soon. A few minutes later, the doctor examined Alex, showing great compassion for us, reassuring us that many people had come in with dark urine this week, probably because the intense heat was causing slight dehydration. As she examined his mouth, she noted that he had cheilitis, a yeast infection, in the corners of his mouth, as well as inflammation of his mouth, likely caused by the yeast. I had noticed the irritated spots on his mouth, but I thought he had a cold sore on one side and dry skin on the other, so I had been treating him with L-Lysine cream for the cold sore and Blistik for the dry skin.  She understood our concerns about infection and/or bleeding and ordered lab tests on his blood and urine.

Fortunately, Alex seemed to view this trip to the ER as fun and didn’t seem to be in any discomfort, so he was calm, pleasant, and cooperative with everyone who examined him. He didn’t even flinch when the lab technician took a blood sample, and he generously cooperated when he had to provide a urine sample. As we waited for test results, the nurses checked on us frequently to see if we needed anything and provided Alex with juice and applesauce while we waited. However, we didn’t have to wait long before the doctor came to tell us that all of Alex’s test results were normal—thankfully, no sign of bleeding nor infection, other than the yeast infection of his mouth. I explained that Alex has had yeast infections in the past and that he responds well to the antifungal drug Diflucan. She gave him a prescription for Diflucan to address his infection systemically along with a prescription for a topical antifungal cream to heal the rash around his mouth. We were thoroughly impressed with this ER. Not only were the facilities comfortable and new, but also every staff member was very kind and capable, especially in how they treated Alex. An added bonus was their efficiency, which meant he was seen, tested, evaluated, and treated within a short period of time without having to wait and worry needlessly.

Finding out that Alex had a yeast infection came as a relief because not only did it mean that he didn’t have a more serious condition, but also this diagnosis made complete sense, causing me to have that “Aha!” moment. Alex’s difficulty with eating and swallowing his pills were probably caused by the irritation in his mouth and lips. In addition, we had noticed that he sometimes seemed to have trouble swallowing, as though he had a sore throat. This, too, was likely caused by the yeast infection. He has been a little more agitated this week, which can be a sign of yeast overgrowth in people with autism, and I’m hoping that as his mouth heals, he’ll feel better and be less irritable. Ironically, a few days ago, Alex had told me totally out of the blue that he needed Diflucan. He hasn’t taken Diflucan in years, and we hadn’t talked about yeast, so this proclamation baffled me at the time. However, Dr. Alex had diagnosed himself; like his mother, reading those medical books comes in handy at times, I guess. Anyway, we were pleased to have such a good experience at the ER and get the medicine he needed. We’re hopeful that he will heal quickly so that he can feel better, which we hope will also address some the eating and agitation issues.  We’re also thankful that once again God led us to good people who could help Alex, reminding us that He will take care of our every need.

“Cast your cares upon the Lord and He will sustain you; He will never let the righteous be shaken. “ Psalm 55:22

Tweaking

From time to time, we sense that Alex needs slight changes in his nutritional supplements, and that leads me to searching Google and thumbing through my well-worn copy of Prescription for Nutritional Healing. A couple of weeks ago, Alex was having anxiety attacks on a daily basis, and they seemed to be escalating. At the same time, his face was breaking out increasingly, which seemed to be an inflammatory response. I e-mailed Alex’s chiropractor, who has been treating his allergies, and he immediately suggested that we give him essential fatty acids. For some reason, Alex does not do well on the omega-3 fatty acids found in fish oil; they make him hyperactive and cause insomnia. Instead, we tried flaxseed oil, a different omega-3, thinking that because it was plant-based, he might have a different reaction. However, he reacted negatively to flaxseed oil, as well, with a middle-of-the-night meltdown, so we had to take him off that. Instead, we tried an omega-6 essential fatty acid, evening primrose oil, which we have given to him successfully in the past. Evening primrose oil does not have the negative side effects in Alex that the omega-3 oils do, and his face looks much less red and irritated, so that does seem to be helping. In addition, we decided to put him back on the amino acid GABA. We had taken him off GABA this summer when he seemed lethargic, but now that he’s more energetic, we felt he needed the calming effects GABA offers him. Since Alex is so sensitive to changes, we must tweak these adjustments carefully and gradually so as not to overwhelm his system.

One day after Alex had experienced two especially aggressive anxiety attacks, Ed and I decided that he probably needed to have his prescription medication altered, as well. After unsuccessfully trying to reach our family doctor, I called our local mental health facility to see if a psychiatrist could see Alex to address his anxiety issues with medication. After I explained our situation and concerns clearly to the receptionist on the phone, she informed me that the soonest we could get an appointment would be about six weeks. Attempting to persuade her to find an earlier appointment, I explained how anxiety makes him aggressive, and since he’s six feet tall, he is a physical threat when he’s in this mood. Unmoved by my pleading, she simply suggested that if he’s a danger to himself or others, we should call the police to restrain him and have him taken to the emergency room, where he could have a psychological evaluation. [Yeah, that sounds like a plan. Take someone who’s already upset and then make that person hysterical by involving police, restraint, and the ER.] Clearly, this was not going to be the way to solve the problem, so I told her we would take him to our family doctor instead.

The next morning, I was able to schedule an appointment with our family doctor, but Alex had another panic attack and refused to go to the doctor. Undaunted, I went to his appointment and explained how he had been obsessing over strange things, such as gas prices from years ago or how deep his voice is, and then becoming anxious and agitated, which caused his adrenaline to kick into “fight” of the “fight or flight” mode. The doctor was very sympathetic and understanding of our concerns, and his years of experience, probably along with his emergency physician training, enhance his ability to assess and diagnose the symptoms. He thought that hormonal changes are likely aggravating Alex’s OCD, and when the obsessions are unresolved, his anxiety heightens and causes adrenaline to kick into high gear. To address these problems, he has increased Alex’s Prozac from 10 mg., which he felt was doing not enough to keep his OCD under control, to 20 mg. for a week and then to 40 mg., and he recommended that we continue to give him low doses of Ativan to control his anxiety as needed. The only problem with Ativan is that it can become addictive, and patients can develop a tolerance that requires higher doses. However, as he looked at the scratches on my hands and wrists, where Alex had attacked me while I tried to give him the sedative the day before because he was so distraught, the doctor noted that we had to weigh the risks and benefits. The risk of my getting hurt was greater than the risk of Alex becoming addicted to low doses of Ativan, and the benefit of sedation was safety during meltdowns. He also told me that I can call him at any time with any concerns or if we need to adjust or change the medications. As I left the doctor’s office, I felt thankful that we have a doctor who will see us immediately and does not make us wait six weeks to see him, who clearly understands what happens when Alex is anxious, and who offers not only his medical expertise but his sympathetic nature. After a week of these changes, we’re relieved that the minor adjustments seem to be easing Alex’s anxiety, and we continue to pray that all of us will enjoy more peace and calm around our home as Alex gets better.

“Then you will have healing for your body and strength for your bones.” Proverbs 3:8