Schizophrenia or a Mysterious Illness:: Julia’s Journey

By Jessie Cheek

When the most unpredictable happens…..

Parenting is challenging under the best of circumstances. If your child suddenly begins exhibiting strange behaviors and appears to be contracting an unknown psychiatric or neurological illness, parenting becomes even more confusing. If the medical professionals can’t seem to figure out what kind of disease your child has, where does a parent go for help?

Discovering the answers to Julia’s mysterious illness was a long and complicated journey. A misdiagnosis of Schizophrenia delayed proper treatment. Once a correct diagnosis was given, finding and receiving the appropriate treatment for her condition was another major challenge. This story is a journey of perseverance amidst many obstacles.

• Language: English
• Publisher: WestBow Press
• Release date: Jan 21, 2021
• ISBN: 9781664217799

Jessie Cheek

Raised in California by two Dutch immigrant parents, Jessie Cheek graduated from Azusa Pacific College with a double degree in Liberal Studies and Biblical Literature. She also received both a Master of Arts in Theology and a Master of Arts in Cross-Cultural Studies from Fuller Theological Seminary. Her husband, Michael Cheek, a native of Texas, was her next-door neighbor in Fuller Seminary student housing. During their thirty-four years of marriage, they have lived in California, Texas, Illinois, Kansas, Florida, and now again in Texas. During her twenty-two years as a homeschooling mom of five, she amused herself by researching and writing about genealogy. After her daughter, Julia, contracted a mysterious illness, Jessie’s interest changed to becoming an advocate for patients with rare diseases. Jessie has always been very persistent in all of her endeavors, whether it is praying for family and friends, playing her favorite board game, Catan, researching genealogy, or researching her daughter’s mysterious illness. Her Christian faith has sustained her through many challenges. Her motto is, “Nothing is Impossible with God.”

Book preview

ONE

WHAT HAS HAPPENED TO OUR DAUGHTER?

SATURDAY, SEPTEMBER 21, 2013

At 5:30 a.m., my husband, Mike, and I were jolted awake by a phone call. Who in the world would be calling us so early in the morning?

The caller identified himself as a police officer; then, he asked, Do you know a Julia Christine Cheek?

Yes, that is our daughter, I answered.

We have her in custody, he declared.

I couldn’t believe what I had just heard! At that time, Julia was eighteen years old, and as far as we knew, she was sleeping in her bed. We were suddenly wide awake and very alarmed to hear the policeman tell me that he had been called to a house in a nearby neighborhood because our daughter, Julia, had been banging on their door. The officer said he would bring Julia to our home, and he would talk to us in person. We gave him our address.

The first thing we did was to run to Julia’s bedroom to verify that it was indeed empty. We ran downstairs and observed that the front door was wide open. The reality of the situation began to set in. We quickly got dressed and met the officer at the front door.

Julia was still wearing a hospital identification bracelet. The night before, Julia had been in the ER, and we had gotten home about 3:30 a.m. We were asleep by about 4 a.m. and had assumed that Julia had gone to sleep also. She had left our house, in the rain, barefoot, without her glasses. Julia walked down the street, crossed another wider road, and wandered into another neighborhood. She knocked on a stranger’s door, and they called the police. Thankfully, the neighbors did not press charges.

When the police were questioning Julia, she was able to remember her telephone number, but she insisted that she was not Julia Christine Cheek.

As Julia walked in our door, she began telling the police officer that we were not her real parents, that her name was not Julia, but Rebecca Jones. She believed that we had adopted her. What had happened to our daughter?

The officer proposed to take her downtown to Ben Taub Hospital’s psychiatric ward. We objected and asked if he would please release her into our custody. We promised that we would take her to a psychiatric facility of our choosing. We further explained that we had been proactive, and we had been taking her to see many doctors during the past year. We knew there was something wrong with her, but we hadn’t been able to discover what was wrong. The officer agreed to allow us to handle the situation, but he warned us that if he ever found her on the streets again, that he would be taking her to the Ben Taub Hospital’s psychiatric ward.

TWO

THE BEGINNINGS OF JULIA’S MYSTERIOUS ILLNESS

Julia had always seemed like a pretty normal child, except for one thing. She had a sleep problem. Even as an infant, she could never go to sleep before midnight and had always seemed very tired in the mornings. Yes, we had tried all the usual interventions to try to get her on a regular sleep schedule, but nothing worked. Finally, because we were a homeschooling family, our solution was to adjust her schedule so that she could begin her schoolwork each day at ten o’clock in the morning.

She had always been a very pleasant little girl. Even as a toddler, she earned the name Smiley Box. She even thanked me one day as I was changing her diaper. She couldn’t have been more than two years old at that time. She was unusually compliant and pleasant as a young child.

Julia was a very bright girl, having taught herself to read, beginning at the age of three and a half. When she started school, she completed her homeschool assignments quickly. Julia had a particular curiosity about foreign languages, and her math papers were such a breeze, I never even drilled her with the flashcard math facts as I had done with her two older brothers. She had a good imagination and wrote creative stories effortlessly. When she was in the fourth grade, she almost won the homeschool spelling contest (for kids up to 8th grade).

When Julia was in the eighth grade, she began having difficulty with math. That was a surprise. It seemed to me that she might have Attention Deficit Disorder (ADD), as she appeared to be losing some of her ability to focus. I attributed her problems to stress as it hadn’t been an easy year for our family. In December of 2007, in the middle of Julia’s seventh grade, Mike and I, and our five children had made an unplanned move from Tallahassee, Florida, to Houston, Texas.

We lived in an apartment for three months before moving into our house on March 17, 2008. We bought a house large enough to accommodate my father-in-law, Lewis Cheek, but at first, he refused to come to live with us. Every Saturday, Mike and I would leave the children and go to his home in Baytown, which was 56 miles away, to attend to his needs.

SEPTEMBER 2008

The summer of 2008 had a very active hurricane season. Three hurricanes threatened to hit near the Houston area. On August 5, we had Hurricane Edouard. Since my father-in-law was living near the coast, he agreed to come and stay with us for a few days. After the danger was over, Mike took him home. On September 1, Hurricane Gustav hit the Texas Gulf Coast, but Baytown was not severely impacted. That time Granddad stayed with us for a week, and again Mike took him home. On September 13, when Hurricane Ike threatened to hit our part of the Texas coast, Granddad agreed to stay with us again. We were becoming more and more aware of how much his health was declining.

Hurricane Ike did a lot of damage to Baytown, and it was several weeks before the power was restored. When his home in Baytown finally had the power restored, he again requested to go home. This time Mike told him that he needed to continue to live with us instead. It was very hard for us, and Granddad was very unhappy, but all his friends and extended family thought our actions were long overdue.

Julia has two older brothers, Tim and Philip. In the summer of 2008, Tim had moved out of the house, and Philip was attending Mayde Creek High School. I was homeschooling Julia and her two younger siblings, Peter and Amy. Due to our unexpected move to Texas, the older boys had had a lot of adjustments to make. Tim had to change schools in the middle of his senior year, and Philip was in the middle of his junior year. Their plans had to change completely, and Philip missed his friends very much. Both boys had already completed the requirements for the Florida Bright Future’s Scholarship, which would have assured them of a free ride to a Florida public university.

None of that was possible since our family had to move to Texas. Mike’s job in Florida had ended, and his dad needed us in Houston. In October of 2007, Mike had been offered a job at KBR in downtown Houston. He moved to Texas and lived with his dad for a few months while I prepared for the sale of our home in Tallahassee. It was a hectic time as I had to work with a contractor to make many repairs and upgrades. After we put the house on the market, it took a while before it was finally sold.

Julia’s seventh grade school year was, therefore, a tough one for our family, but her eighth grade school year was challenging as well. Since Granddad had come to live with us in September 2008, I had to care for him in addition to homeschooling three children. I noticed that Julia was having more difficulty with her schoolwork, but I attributed it to all the adjustments that our family had been experiencing. I was very busy but managed to help Julia make it through her schoolwork.

SUMMER 2009

One day the home health care nurse came to check on my father-in-law. His pulse was dangerously low, and she told me that he needed to be admitted to the hospital right away. As I looked at him peacefully lying there in the ER room, I thought that he might pass away in peace. The doctor had an emergency pacemaker put in and said he would be on the road to recovery. The discharge nurse told us that he would need even more care than he had needed before. I began to cry. I didn’t think I could help care for him any longer and continue homeschooling, especially since Julia seemed to be having a hard time with her studies and would need some extra attention. Mike agreed that we could no longer care for Granddad at our home. We moved him to Colonial Oaks Assisted Living nearby in Katy. Granddad was very unhappy about this move as he had gotten used to living in our house that year.

AUGUST 2009

Philip also moved out of the house that month. Although Granddad was being taken care of in a facility, I was still feeling stressed, and I wasn’t sure I had the energy to help Julia with all her schoolwork and continue to teach Peter and Amy as well. I thought things would go better for all of us if I sent Julia to a public high school. She began her freshman year at Mayde Creek High School.

Julia seemed to adjust well to high school. She had some church friends who also attended Mayde Creek. She didn’t seem to handle the pre-AP classes very well, though, and that kind of surprised me, but we didn’t make a big deal of it.

Soon after starting high school, the school nurse had reported that she had tested Julia for scoliosis. We went to the orthopedic doctor, and he told us it was a mild case of scoliosis, and we didn’t need to worry about it. Her pediatrician noted that Julia seemed to have stopped growing and wondered if we should do some testing to see if she had anything wrong with her. Since some of our relatives were short, we didn’t think much about it, although everyone else in our nuclear family was tall.

SEPTEMBER 2009

Our podiatrist diagnosed Julia with flat feet, but since she was not experiencing any pain, he did not recommend surgery. Since both Mike and Amy had flat feet, this didn’t seem like a severe problem. So, Julia had scoliosis, flat feet, and she was a little shorter than the rest of the family. These were the only signs we had that anything at all could be wrong with our daughter. We thought these little things were nothing to worry about.

SEPTEMBER 2011

During her second year of high school, she joined the drama club, even landing a part as a lady pirate in the school play, Treasure Island. Yet, Julia seemed to become fatigued quite often, so we encouraged her to drop out of the drama club.

FEBRUARY 2011

During the second semester of Julia’s sophomore year, things began to change. Her grades began to slip. I started to get emails from her teachers, saying she was sleeping in class, and she was missing assignments. Her teachers were concerned for her as she didn’t seem to be rebellious at all, just unable to focus. Her teachers gave her many chances to turn in papers, but she continued to skip assignments. I would try to talk to Julia about these issues, but she became more and more unwilling to talk to me about anything.

MAY 2011

Julia had one teacher who had known her during her freshman year, and she remarked that Julia seemed to be different this year. Even so, her teachers all loved Julia. She was chosen from among all the students in the sophomore class to receive the RAM pride award. This award was usually given to a student who excelled academically, had integrity, was courteous, punctual, and dependable. Her teachers didn’t think she was suffering from a case of rebellion. I’m sure that other students had better grades than Julia had, but for some reason, the teachers chose Julia to receive this award. In the future, we would be thankful for this as telling the doctors about her teachers’ opinions of Julia would be useful to the doctors, and it was probably instrumental in her eventual diagnosis.

I wondered if getting up so early for school was beginning to take a toll on her. Before going to high school, she had never gotten up early in the morning, and now she had to get up at 6 a.m. and be at the bus stop at 6:42 a.m. I began to wonder if we had made a mistake in sending her to public school. Then one day that spring, I learned that a gun had been found on campus, and I began to wonder if Mayde Creek was a safe school for my children to be attending.

As I contemplated my homeschool book order for the next year, I realized that I would have to decide that week if I should order some curriculum for Julia for the following year. I prayed and asked God to show me a sign that day if I should be bringing her home. Later, when Julia came home from school, she told me that it had not been a typical school day. The students had a big protest because some of the teachers had been let go. Somehow, I knew this was the sign that I needed. I told Julia that I thought she should come home to finish high school. I thought she would argue with me, but she didn’t. I thought she would be disappointed if I would remove her from her friends, but she said, Okay, Mom. Wow! That was amazing!

JUNE 2011

At the beginning of the summer, Julia, and some of her drama friends, assisted the drama teacher at Mayde Creek High School in a summer drama day camp for elementary children. Amy attended the day camp, and both girls had a great time during this camp.

Philip moved back home that summer. I was happy to have him home again as he helped us empty my father-in-law’s home in Baytown. It was a big production. I didn’t spend much time worrying about Julia’s health. In the fall, I began homeschooling Julia again, in addition to still homeschooling Peter and Amy.

Julia continued to struggle with her schoolwork, especially with her math. Soon she could no longer write essays. Julia was withdrawing socially as well, showing no interest in keeping up her friendships from high school. She was only able to complete about half of her schoolwork during that school year.

NOVEMBER 2011

Julia had all four of her wisdom teeth extracted. I thought it was a little odd that she didn’t ask for any pain medication after she came home. Her older brothers had needed strong medications to endure the pain, but she claimed that she didn’t feel any pain.

We began to notice some other strange behaviors, like pacing and jumping all around. Julia had always been interested in role-playing and drama, and she said that she was just acting things out. Since we noticed that sometimes she was awake during the night, it was no wonder she was tired in the daytime.

Because I thought Julia must have a sleep disorder, I made an appointment to see a sleep specialist. After our initial consultation, Dr. Nicholson declared that since she had no apparent respiratory problems, a sleep study was not warranted.

I continued to try to homeschool Julia, but she was completing fewer and fewer assignments. I had no idea why her schoolwork was becoming so difficult for her. She didn’t seem rebellious but seemed to withdraw more and more from our family interactions. She rested a lot in her bed, and when she wasn’t relaxing, she was pacing all around her room. Looking back on this time, I should have known something was seriously wrong, but nothing in my background had prepared me for a situation like this. She wasn’t complaining of any pain, and she didn’t appear to be ill in any way. I wondered if this was an unusual kind of teenage rebellion, but it didn’t feel like that.

SUMMER 2012

When summer arrived, we went on a big five-and-a-half-week family vacation to the West Coast. I was delighted for my three younger children to see the places where I grew up in California. Mike and I both had friends and family in Oregon, Washington, and New Mexico as well. It was a great summer. Julia was a bit aloof, but otherwise, we didn’t notice too many problems. Philip had stayed behind to look after Granddad and our house.

Things had been slowing down in Mike’s department at KBR, and Mike wasn’t sure he would have a job when he returned, but we had a great time on our vacation anyway. KBR didn’t have much work, but they never laid him off from his job. Nevertheless, Mike decided to attend a job fair that was close to our home, and Mustang Engineering was very interested in hiring Mike.

SEPTEMBER 2012

Mike began his new job with Mustang Engineering, and he would no longer have the long commute to downtown. He was able to be home earlier each evening, which helped us to face the challenges of the next few years.

NOVEMBER 2012

I finally decided that maybe Julia was developing ADD, so I convinced her pediatrician to prescribe some ADD medications. I had no idea there could be any other explanation for her strange behaviors. It now became impossible to have a normal conversation with her. Her words were few, and often she would only grunt in response to our attempts at communication. Her pediatrician first prescribed Intuniv, but that just made Julia sleepy, so after one week, I asked the pediatrician for another option. Next, she prescribed 5 gm Focaline, and then she continued to slowly increase the dose to 25 mg. The only results were a big loss in appetite, but no improved concentration. In January, the pediatrician switched her to 40 mg of Vyvanse, but that didn’t help her either. She lost ten pounds during those two months, so I decided to discontinue the ADD medications on February 6, 2013.

Mustang Engineering had a health clinic inside their building, and in October, the entire family received their free flu vaccinations at this clinic. Julia had had all of her childhood vaccinations, even her meningitis vaccinations. We were not an anti-vaccination family.

That fall, Tim also moved back home. It was good to have the older boys home with us while we were having these issues with Julia. It helped us to have the older boys’ perspectives on Julia’s strange behaviors. It did keep me extra busy. Due to Mike’s new job, we were able to buy a new car, which enabled the boys to share one of our old cars. Yet, sometimes one of the boys still needed my help with transportation.

I took Julia to an ADD counselor, but that didn’t seem to help. She now rarely talked to anyone in the family. Later that school year, we went to see a counselor who specialized in fantasy addiction. Julia was spending more and more time acting out things and was only interested in reading fantasy books. She became angry about some of the things the counselor was discussing with her. She began to eat less and concentrate less in all areas of life. None of these interventions helped at all.

FEBRUARY 2013

I told Julia’s pediatrician that I wanted Julia to quit taking the ADD medications, as Julia was beginning to lose weight and was experiencing other side effects of the medicines, with no positive results.

APRIL 2013

Julia was taking up to two hours to eat a simple meal, she could not answer simple questions, and she began to exhibit symptoms like early-onset Alzheimer’s. Julia could no longer unload the dishwasher, couldn’t remember where food was in the kitchen, couldn’t vacuum her room, and would put things in strange places. She showed no signs of depression, nor was she suicidal. When I would ask her why she couldn’t concentrate, Julia once told me that it was as if the fantasies in her head were taking over, and she was unable to push them away. Her pediatrician suggested that I find an adult doctor for her as she was soon to be eighteen years old.

One day I looked at Julia, and her eyes looked funny to me. She had recently told me that she remembered that her eyes felt funny, as if they were rolling back into her head. I decided there must be something seriously wrong with her. I quit trying to teach her and began to concentrate on finding another doctor who would help us discover what was wrong with her. I took her back to Dr. Nicholson, the neurologist who specialized in sleep disorders. I insisted that he do a sleep study for Julia, even if she had no respiratory issues.

We had discussed with the pediatrician about seeing a psychologist, but we were having trouble finding one who was in our health insurance network. Since I had no previous experience with neurological disorders, I hadn’t recognized them in Julia.

TUESDAY, APRIL 23, 2013

I sent an email to all our friends and explained our concern for Julia. I asked all our friends and family to pray for us as we needed to know what was wrong with our daughter.

WEDNESDAY, APRIL 24, 2013

We had an end-of-the-year homeschool party at Time Square Entertainment. Julia and her brother and sister seemed to be having a good time, bowling, playing at the arcade, and playing pool. Suddenly, I noticed that Julia appeared to be crying, so I took her aside and talked with her. She wanted to sit in my lap. Since Julia was almost eighteen years old, I thought this was unusual, but I held Julia as requested. She told me that she was being troubled by strange thoughts, thoughts which were very upsetting to her. I tried to comfort her. I realized later that these strange thoughts were yet another symptom of her mysterious illness. We talked some more after we got home, and Julia said she was feeling very stressed.

TUESDAY, APRIL 30, 2013

We met with Dr. Nicholson again, and he finally agreed to do a sleep study on Julia. About a week later, the sleep study was done. The technician told me that her test results showed no REM sleep, but he had confidence that Dr. Nicholson would be able to help us. We didn’t meet with Dr. Nicholson again until May 28th. He had ordered some thyroid lab tests. (T4, T3 Uptake, and Free Thyroxine Index).

I am not a medical professional, and before Julia had become sick with this mysterious illness, I had not spent a lot of time examining lab reports. I had had some understanding of lab reports due to caring for my father-in-law, but I didn’t know anything about thyroid labs. Before Julia’s illness, I had always relied on doctors to explain lab reports to me, and I hadn’t done any self-study about the significance of each lab test. Looking back on this first lab report, I now see that her T3 Uptake was just a little high, at 36 (normal is 23-35), but this was not high enough to cause any concern.

I began to research Julia’s symptoms on the internet. I was on a steep learning curve. I read about Alzheimer’s and Parkinson’s but decided that Julia couldn’t possibly have either of these diseases at her young age. As I read about psychosis and schizophrenia, I began to suspect that my daughter was becoming mentally ill.

Since no one in our extended family had ever experienced any mental illness, this was a very new experience for me. My father had recently been diagnosed with Alzheimer’s, but he was already seventy-eight years old at the time of his diagnosis. Mike’s grandmother had had Alzheimer’s, but these grandparents were the only family members with any kind of neurological disorder.

Meanwhile, Julia was becoming more and more confused. She was acting out her dreams quite loudly. Julia listened to music a lot and talked out loud a lot, but what she said was no longer understandable. She was compliant but could only accomplish the simplest tasks with great difficulty.

Dr. Nicholson did tell us that Julia’s sleep study showed no REM sleep, but he didn’t think that there could be a physical cause of her problems. He suggested that we see a psychiatrist connected with his practice. Dr. Nicholson didn’t believe that any medical testing was warranted. I did not agree with his opinion of Julia’s situation. I decided to look for another neurologist who would be willing to do additional medical testing.

THURSDAY, MAY 30, 2013

A relative recommended a different neurologist. Dr. Neville listened to our story. We were happy that he was willing to order an EEG and an MRI of her brain.

FRIDAY, JUNE 14, 2013

At our neurologist follow up appointment, Dr. Neville told us that her EEG and MRI were normal. We showed Dr. Neville a video that Mike had taken of Julia’s strange behaviors. Dr. Neville recommended that we see a psychiatrist.

Later, upon reading the MRI report more closely, we noticed that Julia had a small pineal cyst. It was identified as 10 x 7 x 6mm in AP, transverse, and craniocaudally dimensions respectively, no mass effect is seen. Dr. Neville had not mentioned that because he didn’t think it was a significant finding.

Dr. Neville had ordered a little more bloodwork. He tested her vitamin B1 and B12, as well as TSH (thyroid) and a cardiovascular homocysteine test. He also tested for RPR (a test for syphilis). However, all of these results were within normal ranges.

While I was writing this chapter, I realized that I had never researched what the cardiovascular homocysteine test was. I looked it up online and discovered that homocysteine is an amino acid. While high levels of homocysteine are a risk factor for heart disease, I learned that this amino acid could cause brain issues as well.

I had taken the time to learn a little bit about the thyroid gland since both neurologists seemed interested in measuring Julia’s thyroid levels.

The thyroid gland is a small, butterfly-shaped gland located in the base of the neck just below the Adam’s apple. Although relatively small, the thyroid gland plays a huge role in our body, influencing the function of many of the body’s most important organs, including the heart, brain, liver, kidneys, and skin. Learn more about causes, symptoms, tests, diagnosis, and treatments for thyroid conditions. (https://www.aace.com/disease-and-conditions/thyroid) Used with permission from AACE.com.

The psychiatrist that Dr. Neville had recommended was not in our insurance network, so we decided not to see him. A friend recommended a different psychiatrist, but he was also not in our insurance network.

Dr. Neville did suggest some medications to help with Julia’s sleep issues. First, he suggested we try melatonin (3 mg). When that didn’t help, Dr. Neville asked us to monitor her sleep all night. Her younger sister, Amy (age twelve), volunteered to watch her until 2:30 a.m. I took over for two hours, and then her younger brother, Peter (age fifteen), took over for the last two hours. We all watched as she tossed and turned a lot. Next, he suggested Lunesta, and that medication kept her up for three hours. Another medicine made her sleep even more miserable. Finally, he prescribed 10 mg of amitriptyline, an antidepressant. She began to be able to sleep, but she slept too much, twelve to fourteen hours a night. It did seem to help calm her down but did not resolve any of her other symptoms, and she still felt tired.

I became fixated on learning about the pineal gland and pineal cysts.

The pineal gland (also called the pineal body) is a small endocrine gland that produces melatonin, a hormone that affects the wake and sleep patterns and seasonal functions. It is located near the center of the brain and shaped like a tiny pinecone. (https://www.aace.com/all-about-endocrinology/understanding-common-terms-endocrinology) Used with permission from AACE.com

I learned that other patients with sleep issues also had pineal cysts. Unlike people with larger pineal cysts than Julia’s cyst, Julia had never suffered any headaches or blurred vision. No doctor I consulted believed that this pineal cyst could be causing her symptoms. Still, I made a note to myself that we should monitor this cyst to see if it would grow larger later on.

I wondered if there might be something we could learn about her mysterious difficulties by doing some more extensive bloodwork, so I made an appointment with a local endocrinologist.

SUMMER 2013

One of our neighbors, Fatema Josh, a professional artist, gave Julia semi-private art lessons for a week, and that seemed to make Julia a little happier. We were thankful for Fatema’s patience with Julia, despite Julia’s difficulties in concentration.

One Saturday evening, we invited a few of Julia’s friends over for a game night, and she was still able to participate in playing games and chatting with her friends.

MONDAY, JULY 1, 2013

We had our first appointment with Dr. Sikes, a psychiatrist. She had been recommended to us by a homeschooling friend. Dr. Sikes told us that Julia’s situation seemed to be unusual. After asking Julia all the usual questions, it was her opinion that Julia was not bipolar, not suicidal, not depressed, and not developing schizophrenia. She suggested that some underlying medical condition probably caused Julia’s situation. She suggested that we look for a more curious doctor at the Medical Center in downtown Houston.

Meanwhile, I talked to my primary care physician, and he suggested that we take Julia to see a pulmonologist, a sleep specialist. I did not know what kind of doctor a pulmonologist was, but I made an appointment for Julia to see one.

WEDNESDAY, JULY 10, 2013

We saw our first endocrinologist, Dr. Chastain, at a local endocrinology office. In addition to the routine CBC and comprehensive metabolic testing, Julia’s vitamin D levels were tested, and more thyroid tests were done (T4, Free, TS total TSH). Her estrogens, estradiol, progesterone, growth hormone, prolactin, cortisol, LH, and FSH were also tested. We had to wait until our next appointment on August 3rd to get the results of this bloodwork. (I didn’t know at this time that I could go online and get the results a bit earlier from Quest Diagnostics. Sometimes lab results are not posted until the doctor has seen the patient.)

TUESDAY, JULY 16, 2013

Not wanting to be in denial about Julia’s condition, we decided to get a second opinion from another psychiatrist, Dr. Peyton. Dr. Peyton agreed with Dr. Sikes that Julia was an unusual case. He said it was very difficult to tell the difference between ADD and a sleep disorder. Dr. Peyton did suggest that we try one more ADD medication, Strattera, along with the amitriptyline Julia was currently taking, and we agreed to try it. After about three weeks on these medications, Julia was finally able to concentrate a little on a computer music program, so we thought we were making some headway. She was also working on a homeschool art class again.

THURSDAY, AUGUST 1, 2013

We saw our first pulmonologist, Dr. Plummer. He examined Julia and looked at her sleep study report, and he agreed that Julia was an unusual case. He said that many college students aren’t getting REM sleep, but they don’t report a lack of ability to concentrate as a result. He wasn’t worried about the lack of REM sleep, and since she was reporting a few dreams, he thought that she was probably getting more REM sleep now that she was on the amitriptyline antidepressant medication. She was getting another kind of deep sleep, albeit this deep sleep was interrupted a lot. He looked at her throat and said that her throat was a bit narrow and that sometimes this causes sleep issues, but he didn’t think that installing an expensive dental appliance to force open her throat at night, or using a CPAP machine would be the right thing to do. Dr. Plummer said that often these kinds of situations are treated with stimulants. Since we had already tried that (the ADD medications of 2012), and there was no positive change in her concentration or sleep patterns, he suggested waiting another month to see if the full effects of the Strattera could help her to concentrate better.

Dr. Plummer had a good sense of humor, although he took everything that we were discussing very seriously. He said there was a medical name for her condition. Idiopathic Hypersomnia and explained what the term meant. Idiopathic meant we have no idea why. Hypersomnia meant excessive sleepiness. The term meant Julia was excessively sleepy, and we had no medical reason to explain it. He said that he knew that didn’t help a lot, but at least we would know how other doctors might refer to her sleep issues. He