Sunday, July 29, 2012

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

Sunday, July 22, 2012

Winning the Prize

Years ago, I used to fill out entries for the Publishers Clearing House contests, hoping that some day, the Prize Patrol van would pull into our driveway, bringing roses, balloons, and best of all—a giant check showing that we had won the large cash giveaway. This week, we had something nearly as exciting happen as we found out that Alex qualified for state disability funding that will pay for a number of services for him. First, we were notified that he qualifies for Medicaid, which will help pay for his medical expenses. Then, we received a call that he qualified for the Indiana Medicaid developmental disability waiver, which will pay for various services to help him become more independent. Although the supervisor who came to our home this week to discuss his services budget didn’t bring roses and balloons, the file folder indicating how much money Alex would receive was essentially the equivalent of the giant check often featured in the Publishers Clearing House commercials. Needless to say, we were thrilled.

Waiting for disability funding is a notoriously slow ordeal in Indiana. Many parents wait several years before their children receive money for programs and assistance they desperately need. When we started applying for funding about three months ago while Alex was hospitalized, an official from the state agency initially told us that we would likely have to wait two or three years to receive services. With the help of Alex’s caseworker at the hospital, we were able to move things along more quickly. Since she knew how the process worked, she guided me through the arduous paperwork, expedited forms by faxing them for us, made phone calls pleading our case, and scheduled necessary medical work while Alex was in the hospital by arranging a psychological evaluation, a physical exam, a TB test, and a chest x-ray. Having her as our advocate was truly a blessing because I know she moved things along much more rapidly than we could have done on our own. While she was taking care of these details, I was busily filling out required forms and submitting documents, which made my organizational skills come in handy. At one point, I asked Ed what people who weren’t organized do in situations like this, and he responded, “They marry people like you.”

Once all of the paperwork had been sent to the state agencies, we were told that although “there is no timeline,” we would probably have to wait at least four or five months. In the meantime, I decided to investigate various agencies that provide services for adults with autism in our county and adjacent counties. Between Internet research and several phone calls, I had a better idea of what kinds of services each provider offered. Also, Ed, Alex, and I toured three facilities to see first-hand what programs might best suit Alex’s needs. As I mentioned in a previous blog entry, all three of us were especially impressed with Lakeside, a local facility that operates a curriculum-based program for adults with disabilities, very much like a school where Alex could continue to develop skills and learn. Once we made this decision, we have been working with an intake coordinator to begin the process of considering Alex for enrollment.

One of the prerequisites for Alex’s enrollment in the school program was to have a behavioral assessment. After more Internet research and making several phone calls, I found two therapists who could evaluate him. Some therapists indicated that they don’t have experience with autism, and those with autism experience have so many clients that they have waiting lists for new patients. As I explained in my last blog entry, our first behavioral assessment essentially was a waste of time because the psychologist wanted to run many more tests than we felt were needed. However, we were able to find another therapist with extensive autism experience who was able to see Alex within a week. We were very impressed with her warm interaction with Alex and her understanding of autism. After our hour-long session in which she asked all three of us questions to gain more insight into Alex’s behavior, she told us that she felt confident that she could write a behavioral assessment based upon that single session. Moreover, she indicated that she could write the report we needed within a week. In addition, she explained that once Alex received state funding, he would be eligible for behavioral therapy through her office in which therapists could come to our home and work on not only curbing negative behaviors, such as his impulse control issues, but also work on helping him develop positive behaviors, such as self-help skills.

When the supervisor from the state-appointed agency that helps clients who receive the developmental disability waiver came to our house this week, she explained that based upon all the information we had provided, Alex qualified for several services. First, they will pay for a day program for him, such as the Lakeside program. They will also fund transportation for the day program; a van can take him from our house to and from the day program so that we don’t have to drive him ourselves. In addition, they will provide respite care as needed, so that a qualified caregiver can come to our home and watch him, allowing both Ed and me to leave the house and know that he’s in good hands. Another service offered is the behavioral therapy we had learned about during his behavioral assessment, and we requested that the therapy group where he had his assessment done provide this service since we feel confident they will work with Alex well.

While we would ultimately like Alex placed in a good group home, we discovered from the agency supervisor that Indiana is moving away from this concept in favor of supported living. A more likely scenario for Alex, she explained, would be that he would live in an apartment with two roommates who also have disabilities, and they would have caretakers provided round the clock to help meet their needs yet working to make them more independent. Since I hadn’t considered supported living as a possibility for Alex, this concept seemed a bit shocking to me at first. However, the supervisor explained that this program offered more freedom, as Alex could move from one apartment placement to another if needed more easily than from a group home. In addition, finding an apartment here in town would be easier than finding a local group home placement. Again, we plan to work with our local disability service provider to see what they can find regarding supported living placement and will pray that when a good arrangement comes up for Alex, we will know this is the right time for him to move. Until then, we are thankful that the process of getting him state aid proceded much more rapidly than usual and that our local disability agency offers outstanding programs that can meet his needs. Once again, we wait patiently for the next step God has planned for us, and pray that all three of us will adjust well to the changes, knowing that He has arranged everything in advance ultimately for our good.

“Let all that I am praise the Lord; may I never forget all the good things He does for me.” Psalm 103:2

Sunday, July 8, 2012

Making Progress

While we’ve spent most of the week under a terrible heat wave, we have made good progress with Alex. Last weekend, a doctor diagnosed him with a yeast infection of the skin and gave us oral and topical antifungals to treat the condition. Knowing Alex’s past history with yeast infections, however, we suspected that he likely had the yeast overgrowth internally, as well. After his initial dose of Diflucan, we began seeing curd-like substances in his mouth and nose, a sure sign that yeast had invaded his digestive system and perhaps other organs, too.  In the wee hours of Monday morning, we heard him coughing and discovered that he was coughing up more of the curdy yeast, a necessary step to his healing. On the bright side, the yeast rash on his face responded well to the topical cream and began to disappear. Fortunately, the doctor had told us that his condition is not contagious, so we didn’t have to worry about his spreading it to other people.

On Monday, we went again to visit the day program where we want to enroll Alex and met with our intake coordinator and the facility director. When we arrived, all of the staff and clients were outside, despite the intense early afternoon heat. Our intake coordinator immediately came to tell us that the smoke detectors had gone off, forcing everyone to evacuate the building until they could establish that no fire risk existed.  Once the source of the smoke that set off the alarm—an art project that involved melting crayons with a hair dryer—was established, everyone was allowed back into the building. Guided by the school’s friendly director, Alex toured the building for the second time, trying out Wii bowling, scanning through a set of encyclopedias that caught his attention, and checking out the touch screen computers he found intriguing. Seeing him engaged in the various activities and comfortable in that setting makes us hopeful that he will be able to participate in the day program soon.

On Tuesday, we took him to a psychologist to begin behavioral assessment as part of his enrollment for the day program. Prior to our appointment, I had completed nine pages of forms regarding Alex’s health and development, going back to the womb. Although we explained that we were convinced Alex’s diagnosis of autism was correct, the psychologist had me complete an autism rating scale as well as one for attention deficit disorder. As I was completing those forms, Ed had to ask Alex 370 questions for a personality inventory. While Alex was patient and compliant to answer all of these true/false questions, we suspect that he didn’t understand what some of the questions were asking, such as “Is your sex life fulfilling?” or “Do you get embarrassed when someone tells a dirty joke?” The inventory also asked, “Do you love your mother?” and “Is your mother a good woman?” Since he answered both of these questions in the affirmative, I’m hoping that he did understand those questions and was being truthful. After we completed the assigned tasks, the psychologist wanted us to come back on Friday for more assessments.

Since Wednesday was the Fourth of July holiday, we had no appointments scheduled and just enjoyed a quiet day at home relaxing.  Even though people in our neighborhood were setting off loud fireworks throughout the day, Alex seemed unfazed by the noise and never became agitated. In fact, we had noticed that every day since he took the Diflucan on Saturday, his behavior seemed to be improving as he became calmer, more pleasant, more alert, and better natured. A quick review of my books and some online research showed that yeast overgrowth can cause behavioral issues in autism, including agitation and aggression. As Alex’s physical symptoms improved this week, his behavior improved, too, giving us hope that addressing his yeast overgrowth could help him return to his calm and pleasant self.

On Thursday, we had an appointment with the nurse practitioner who oversaw his medication while he was hospitalized in the Behavioral Medicine Department. After we gave her a quick update on his status, she decided to keep him on the same medication regimen but told us that we could decrease some of his sedatives by halving the doses or eliminating them if he seemed calm enough not to need them. She indicated that she wanted to see him again in three months, and she gave us lab orders to be run in six months to check his various levels. In addition, she agreed with my decision to add a multivitamin and probiotics to his medicines as a way to address his yeast overgrowth issues, and she wrote a prescription for two more rounds of Diflucan. After our appointment, I felt thankful that she is handling Alex’s case because of her expertise with autism and her personality that makes working with her very easy and comfortable.

On Friday, we returned to the psychologist’s office, where Alex was to work with one of the staff on a battery of tests, but the psychologist was not there. After one set of tests, the evaluator told us that she wanted to use a different test with Alex, but she didn’t have it there and would have to reschedule in a couple of weeks because she would be out of town the following week. I told her that we needed to have testing completed before Alex could be considered for the day program and asked her to have the psychologist call me. Once we were home, I contacted another office whose counselors have experience with autism and scheduled a behavioral assessment for this upcoming week. When the psychologist called, I explained that while I appreciated all the tests she was willing to run with Alex, we did not need I.Q. testing for him, simply a behavioral assessment. She didn’t seem to agree with me, and she referred me to another psychologist with more experience in autism; however, I know from other parents that agency has a waiting list and is not taking new clients. After thanking the psychologist for her time, I was glad that we were able to find another place to have Alex tested and hopeful that they would know how to assess him.

Although the changes in plans for Friday seemed like a setback, they were actually a blessing because Alex had a die-off reaction later that morning. Often, about seven days after beginning yeast treatment, a person will experience a yeast die-off, which is characterized by vomiting and extreme fatigue. After vomiting twice, Alex spent most of Friday sleeping as his body was coping with the die-off reaction. Even though he probably didn’t feel well, he was very sweet and pleasant and didn’t become upset by his physical symptoms. In fact, every day this week, we saw improvements in his behavior, which we are hopeful is a sign that healing in taking place in every part of his body. Yesterday, he had a minor episode of setback in behavior, but he willingly went to his time out spot and complied in serving his time without complaint. Moreover, as soon as he got there and I explained why he had to have a time out, he immediately apologized, which was surprising and gratifying. He took his second dose of Diflucan yesterday, and we pray that as it heals his body, he will continue to improve his behavior so that we can have our consistently sweet and obedient son again. Seeing several glimpses of the real Alex throughout the week has encouraged us that we are making progress toward that goal, and that God is fulfilling the promise of hope and healing.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

Sunday, July 1, 2012

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