Breakthrough

As I have explained in previous blog entries, Alex has been dealing with chronic candidiasis, or yeast overgrowth, in his digestive tract for many months, which is fairly common in children with autism. From the time he was a baby, we have treated him for yeast infections every few years, but they always responded to medication and were not as stubborn as this current round. In June 2012, a doctor diagnosed him with thrush and cheilitis, fungal infections in and around his mouth. Since then, we have repeatedly taken him to doctors, who have treated him with runs of antifungal medications and probiotics, hoping to rid his body of these pesky infections. In addition, we were blessed to find a family doctor last spring who emphasizes restoring Alex’s immune system through vitamins and nutrition so that his body can fight infection better.

As we have dealt with the yeast the past year and a half, we have noticed the same pattern repeat itself: Alex becomes irritable, impulsive, and obsessive as we then notice his saliva becomes milky and white spots appear in his mouth. Once he begins taking antifungals, not only do his physical symptoms disappear, but his behavior also improves significantly. His doctor pointed out that when Alex doesn’t feel well, he is just cranky, and his behavior reflects that irritability. While we certainly don’t want Alex to suffer from the thrush, we don’t want to suffer his wrath when he’s feeling ill, either. Consequently, we keep working with his doctor to get this fungal infection under control.

Last month we took him back to his family doctor again with the same symptoms: white spots, milky saliva, and increased agitation in his behavior. Once again, the doctor confirmed what we suspected—the thrush had returned despite two months of taking daily doses of the antifungal Diflucan. During the time Alex was on the medication, he was healthy and happy, and we had a terrific summer with him behaviorally. However, within a couple of weeks off the antifungal, we saw a decline in his behavior along with the telltale physical signs of thrush. This time his doctor wanted to try a new medication to see if it may be more effective long term and to prevent Alex’s body from becoming resistant to Diflucan. He prescribed the antifungal Itraconazole, which Alex takes twice a day, for six months if needed. Once again, we hoped and prayed for healing with this new medication.

Within a few days, we saw improvements in Alex’s mouth and behavior without any negative side effects from the medication, which was a blessing. In fact, last week, which marked three weeks of being on Itraconazole, was one of the best weeks we have ever had with Alex. Moreover, he was the best he has been in his life in terms of his behavior, mood, interaction with others, and speech. One improvement is that he has been more independent and focused, entertaining himself by reading and watching television instead of relying on Ed or me constantly. Not only has he been cooperative and pleasant, but his language skills, which have always been his greatest weakness, have also shown huge gains in a remarkably short time. Instead of speaking in short phrases or sentences with syntax, or word order, problems, he has been speaking clearly in complete, often complex sentences. Also, we have been working with him for many months to talk loudly enough to be heard instead of mumbling, and he has recently been speaking with an appropriate volume so that we don’t need for him to repeat himself. With this breakthrough in speech, we now have a much better idea of what he is thinking. For example, the other night, he asked me, “As people get older, does their metabolism slow down?” After all the years he has struggled with articulation (speaking clearly), volume, syntax, and generating speech, despite years of speech therapy, he finally has found his voice, thank God. Perhaps now that he can express himself, he feels less anxiety and frustration, which has helped his behavior. Perhaps now that he’s feeling better, he feels less need to engage in impulsive and compulsive behaviors. I truly believe that we are finally seeing answers to our incessant prayers for healing.

Interestingly, this week we received test results that we had run a few weeks ago before we began seeing the huge improvements. I had asked Alex’s doctor if we could run an organic acids test with yeast culture and sensitivity through Great Plains Laboratory to see what his urine and stool indicated as far as yeast and metabolism. We had not run one of these tests for about ten years, and we were curious to see what the tests might indicate. Although Alex’s doctor was not familiar with the test, he agreed that this test would be worthwhile after I showed him previous test results. Not surprisingly, Alex continues to show yeast overgrowth in his system as well as some metabolic issues that previous test results have indicated. Once again, his doctor and I will discuss what steps need to be taken to improve his health, but the current antifungal definitely seems to be a step in the right direction.

From our experience, I encourage other parents of children with autism to consider investigating the organic acids test to see if their children might benefit from the biomedical interventions the test recommends if results are abnormal. Dr. William Shaw of the Great Plains Laboratory has a special interest in autism and has done extensive research trying to find ways to help children with autism. His website [which can be accessed by clicking here] has considerable information and resources that offer help and hope. The remarkable improvements we have seen in Alex after having gone through terrible experiences with aggression indicate that proper medical treatment can make huge changes in the life of the child with autism. We kept hoping and praying for Alex to get better, and now we see that he can be better than we ever even envisioned. Through the grace of God and the help of doctors, Alex is getting better, and as parents, we are truly grateful.

“O Lord my God, I cried to You for help, and You restored my health.” Psalm 30:2

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

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

Toilet Training

One of the early clues that Alex had developmental delays was his inability to toilet train as a toddler. In fact, toilet training was a great test of patience and perseverance for us because it took about ten years before Alex could use the bathroom completely independently without any daytime or nighttime accidents. We started working on potty training with him shortly before he turned three, but he was nearly thirteen before he knew when he needed to use the bathroom and was able to stay clean and dry around the clock. Fortunately, his slender build allowed him to wear Goodnights disposable training pants for boys until he was trained because otherwise we would have needed to put him in adult disposable underwear, such as Depends. While parents often reassure other parents by telling them that people never walk down the aisle at their graduation or their wedding carrying a diaper bag, I was beginning to think that Alex could be the exception to that rule. His preschool teacher had added to my concerns by informing me that if children are not potty trained by the age of five, they will never be potty trained. Thankfully, she was mistaken. In the decade that we worked on Alex’s toileting independence, we became adept at changing sheets in the middle of the night, doing lots of his laundry, and using spot remover on the carpets.

The lack of success in potty training was not due to lack of effort or resources on our part. I scoured the Internet for tips and tricks, read every book I could find, and purchased a variety of items I thought would help Alex catch on to using the toilet. I had heard that the technique described in the book Toilet Training in Less Than a Day was useful for special needs children, but their method did not live up to its titled hype for us. Since Alex liked to read books, I thought Once Upon a Potty might help him understand what he needed to do. He even had the deluxe version with the little boy doll and his potty that went along with the book, but Alex had no interest in the book, the doll, or the toy potty, let alone in his own potty. Knowing that Alex enjoyed watching videos, I bought some toilet training videos geared for kids and had great expectations for one made by Duke University Medical Center that garnered rave reviews. While the It’s Potty Time video may inspire some children, Alex wasn’t impressed with it, and I frankly found the “Super Dooper Pooper” song a little creepy myself. The most ingenious device I purchased was a system called the Potty Train which consisted of paper strips similar to feminine panty liners that had strips of foil on the bottom. These adhesive strips attached to the child’s underwear and a small device that activated when wet, playing a song to alert the child and the parent to run to the bathroom. Strangely, the song it played was “Theme from Love Story,” which seemed to upset Alex, who, needless to say, did not get on board with the Potty Train. In addition, we tried various reward systems, let him try to sink Cheerios in the toilet, had him pick out special big boy underpants, bought him various booster seats so that he would feel secure sitting on the toilet, and took him at regular intervals to the bathroom. Basically, nothing worked for him.

After several years and limited progress, I began to suspect that Alex could not make the connection between the sensation of needing to use the bathroom and actually going. I think there were physical issues that prevented his success, but we were able to address them eventually. First, he had problems with yeast overgrowth in his system, which were exacerbated by chelation since the sulfur compound DMSA used to remove heavy metals from the body encourages yeast overgrowth. Shortly before he was toilet trained, his doctor did intense yeast treatment by giving him the oral antifungal Diflucan for a month, which did the trick. In addition, we began giving him twice-weekly injections of the methyl form of vitamin B-12, which helps rid the body of toxins and heals nerve damage. Within just a few short weeks of starting these injections, Alex was completely toilet trained. I suspect that he could finally feel the urge to use the toilet, and he complied by going to the bathroom. About the same time, I was feeling pressure that he was nearly a teenager yet still having toileting accidents. I remember thinking that I needed to stop trying to control the situation and handed it all over to God in prayer. I really think that God answered my prayers and allowed Alex’s body to heal through the Diflucan and B-12 shots so that he could finally have toileting success. Whatever worked, we were thankful that he had finally mastered a task we had struggled with so long. Whenever he walks to the bathroom, does his business, and flushes the toilet, I feel blessed that Alex can use the bathroom by himself without needing any help, reminders, or encouragement from us. I also remember that Alex does things on his own timetable, and we just need to wait until he and God are ready for the right time.

“Commit your actions to the Lord, and your plans will succeed.” Proverbs 16:3