Mystery Head Pain
This story isn’t so much about our son John or our struggles. It is about you and your situation. I am going to ask a series of questions. If they do not apply to you, read on anyway. The knowledge in this story may not affect you now, but you don’t know when some friend or family member will someday need this information, thus making you a potential conduit of hope. If these questions do apply, I won’t have to ask you to read on. We have been in your dark and desperate situation and I pray that this will be the answer you have sought and that it will be in time to help your child.
I am not a doctor, nor do I claim to be able to heal your child. I am just a parent and I propose to share with you what we have found in our long search. I hope that this will spare you some of the heartache that we have endured, but mainly I pray this will lead you to a timely cure for your child’s illness.
I DO NOT WISH TO USE THIS NARRATIVE TO ATTACK DOCTORS IN GENERAL.
Most doctors are kind, caring and dedicated to healing. If anything is under attack here, it is the system flaws that confine doctors in their time and their thinking.
In this story, I have not directly identified the doctors who failed to help, or have hurt our son, but I have used the real names of the doctors who have helped us greatly.
I will begin with my favorite doctor, the Great Physician. In order to find hope, you must first pray.
Just a father
An Innocent Enough Start
I must first state that I have the best wife a fellow could ever hope to have. Sue has been a partner from the start and has been a wonderful mother to our children. Sue and I were both in our early thirties when we were married and had the whole world before us.
All of that changed rather dramatically when Sue became pregnant about a month after the wedding. I can’t say it was a bad thing, being the age we were at the time, but I distinctly remember what she said when asked if she wanted a boy or a girl. “I want a puppy” was her response. Sometimes the first response is the best.
All-in-all things went well and we had a daughter who turned out to be the perfect baby. Jenny was sleeping through the second week. She was alert, well formed and good-natured.
Having been so successful the first time, Sue and I decided two years later that it was time to give Jenny a sibling. For being such a good guy, God has a wry sense of humor. John was nothing like Jenny.
To begin with, Sue did every exercise imaginable to make sure she went into labor on April 19th, which was her dad’s birthday and not on April 20th, which happened to be Adolph Hitler’s 100th birthday.
John had no sense of history at the time and held on as long as he could. In fact, while it had been a fairly normal pregnancy, it was a scary labor. The umbilical cord was over John’s shoulder and every time Sue had a contraction, his heart rate slowed. Dr. Beck-Coon, of whom we both think the world, was deeply concerned and was looking to possibly take John by C-section. While she was starting to make those preparations, Sue dilated to the point that she could deliver a natural birth.
From that time on things took a more normal course. We told Dr. Beck-Coon about the Hitler thing and she laughed, “That’s my sister’s birthday! I can’t wait to call her and give her a hard time”. Everyone had a good chuckle over that, except maybe Sue, who was a little preoccupied. It seemed forever before John popped out and if we knew then what we know now, we would have understood his hesitation.
There he was, on his mother’s chest, the seemingly perfect baby boy. John was a little scrunched up in places, as newborns tend to be, but he had all the right numbers of things he should have.
As she held him, Sue
thought back to Mrs. Hitler and how 100 years ago that day, she held her son for
the first time and thought “I wonder what he’ll be when he grows up”. This is
why I married Sue. She has a tender heart for the forgotten victims of life’s
heartaches. It was also a sad reminder of the awesome responsibilities of
A few days later it was time to bring John home. We had prepared Jenny as best we could for the event and she was a very excited two-year-old. We set him on the floor in his car seat so she could get a good look and before long she had him buried in her favorite toys. It was the start of a life long bond between those two. They have had their normal differences, but I will always remember the times they sang in such harmony in the back seat of the car, or the times they gave each other comfort when one was hurting in some way.
Still, John was not at all like Jenny. John had a blood-curdling scream that he used equally if in pain or if he was blissfully happy. Many were the nights when I took John to the laundry room, laid pillows on the floor, turned on the radio softly and laid him on my chest so Sue could get some sleep.
We still don’t know if the screaming was a sign of the pain we would later discover, but he did have other disturbing signs. When we held him, he would often resist us and be very stiff. It was not as if he wanted down. It was more as if he were in pain. Too often he would follow a good meal with projectile vomiting. The kid had the firepower of a panzer division.
When Sue took John to the doctor, his response was “you don’t know what a normal baby is like, your first one was too good”.
There is one rule that applies equally to being a good father or a good doctor: A MOTHER ALWAYS KNOWS WHEN HER CHILD NEEDS HELP.
A Normal Boy
Despite Sue’s lingering doubts, John did seem to be a pretty normal boy. As he grew older, he was a bit on the skinny side, but so were we at that age. He had big beautiful eyes and an expressive face. John gravitated to about anything musical and played well by himself.
I once told him that I didn’t care so much what he did for a living, but I did expect him to be a gentleman. He really took that to heart and has always been an uncommonly courteous young man. One day I took him to the movies and when I stepped up to buy the tickets, John was nowhere to be found. I didn’t panic because I had a pretty good idea of where he was. Sure enough, he was back holding the door for everyone else to enter. Some of the people passing through treated him like a doorstop, but most were appreciative and some downright astonished at this polite young man.
John has often had that affect on people. When he was still quite young, we asked him what he wanted to be when he grew up. He said “I want to be a Saint”. People who know John believe he could probably pull that one off.
John was a little slow in his speech development, so we held him back one year to begin school. He did very well in school, staying on the honor roll the whole time he was able to attend.
When John was about four, he began to tell us about spots he saw. They became almost a playmate to his young mind. John was also very adverse to loud noises, such as fireworks displays. We later found out what we thought was a childhood fear was actually an ability to hear sounds louder than the average person. There may also have been some head pain along with it that he was unable to express at the time.
By now some doctor is reading this and surmising “Ah –Ha, he has migraines!” READ ON.
January 13, 2000, was Sue’s birthday. It was the last good birthday she would have for several years. A few days later we had a boy in trouble. John had a headache so bad that we decided to take him into the local Emergency Room. They were concerned enough to do a CAT scan. It showed no cause for the head pain; therefore it was diagnosed as probably a migraine.
The previous April, as John was playing basketball at recess, he was pushed into a brick wall during some rough play. It appeared to be one of those no-harm-no-foul situations, but we had him checked out anyway. It was thought he might have had a mild concussion.
A few days later, he was at the YMCA practicing against the tennis ball machine. John was just starting out at tennis and had become quite good for his level. He played only for a little while and became very fatigued. He was actually starting to turn a little purple, so that ended the session pretty quick. Eventually John resumed his normal activities.
That autumn, John moved to a new school. The classes were a little smaller, but he made some wonderful friends and was doing very well academically. John tried out for the basketball team, but in practice hit his head going out of bounds. This wall was padded, but John said it hurt worse than the schoolyard incident.
We don’t know if either basketball incident was a contributing factor in unleashing the monster lurking in our son’s body, but a month later the misery began.
A Big System and a Little Boy
Since that first ER trip, John has been examined by nine neurologists, two optometrists, six psychologists, three chiropractors, GPs, endocrinologists, cardiologists and a few assorted specialists I can’t even remember.
He has had four MRIs, two CAT scans, two sleep EEGs, one spinal tap, 0ne twenty-four hour video EEG to detect seizures, sonograms, Baer tests, other assorted tests and enough blood tests to feed the entire mosquito population of Indonesia.
The first neurologist set the tone for what we would see thereafter. Doctor EC, I’ll call him, was a nice man who was known as a prime pediatric neurologist. It was his early assessment that John had migraines. Dr. EC tried a sleep EEG and an MRI and found nothing. He was then more convinced that John had classic migraines.
He tried a few medicines on John, which as a rule followed the same pattern. They all failed to do any good. They even seemed to build up in his system making his situation worse.
When nothing seemed to work, the diagnosis became classic migraines, with an “emotional component”. In other words, if I can’t figure it out, it can’t be my lack of skill; it must be a psych problem.
We were of course just dumb uneducated parents. Sound familiar? Did I hit a nerve? The pattern repeated itself, especially among neurologists:
- Step 1. Examine and test.
- Step 2. Try various medicines.
- Step 3. Find nothing in their power to fix the problem.
- Step 4. Throw the kid in the psych bin.
We went along and ran John through several psychologists, but most of them wondered why we even brought him. It didn’t make sense to us either. John was doing well in school and had hooked up with some good friends. Sue, Jenny, John and I had an otherwise happy and safe home. There was no sign that John had ever been abused by anyone, or had had the opportunity for any such trauma that would have scared him.
It simply didn’t make sense. The worst part was the embarrassment John endured, knowing himself that he wasn’t mentally ill, but being constantly labeled that by big men and women with fancy diplomas. As a family it caused us more trauma than the illness itself.
Like a beaten boxer we held on. We held on to each other, we held onto God, we held on by a thread, but THANK GOD WE HELD ON.
The Monster Eats the Child
While the doctors continued to stumble and accuse, John suffered more and more and the illness took on new dimensions. It seemed impossible that he had so many different symptoms and yet they were right there before us. Check this list. Does your child have any of these?
- John had constant head pain. It was worse some times than others, but it was always there.
- John easily fatigued. A walk to the end of the block and back and he was finished for the day. This condition became worse over time.
- John suffered bouts of memory loss. He became confused and didn’t know what to call simple things like “that big box with food in it”. He didn’t know where to find the cereal bowls. He even forgot our names. For a period of a few weeks, he called us “pipe” and “cork”.
- His pronunciation and voice became young. He pronounced his sister’s name “Remmy” instead of Jenny.
- John began to fall. He would be walking across the floor and would just collapse. I was behind him one day and caught him. It was as though his skeleton had dissolved. He got to the point where he couldn’t walk at all and he had to use a wheel chair.
- John would be easily spooked, taking on a “fight or flight” reaction to his surroundings.
- John would sometimes grab the back of his neck, near the base of his skull and shout, “Take it out!” During these times it was obvious that he was in great pain.
- He was adversely affected by temperature and weather extremes.
- He would get worse after some meals.
All of these weird symptoms and no test results to reflect a cause. It’s no wonder that the doctors thought he was staging the whole thing.
If that was the case, it still didn’t make sense. He did these things whether alone or the center of attention. It didn’t mater if it was a school day, or summer vacation.
The worst was yet to come. John began to have something that was like seizures. He would crumple over in extreme pain. It was as though he was being electrocuted. John would cry out in a grinding twisted scream that could only be compared to the agony of entering hell.
We video taped some of the episodes and showed them to Dr. EC. He didn’t know what it was, but he didn’t believe John was in pain. “If he were in pain, he wouldn’t be crying out like that, he would be withdrawn and quiet”. Following that logic, if I smashed my thumb with a hammer, I should expect to find eternal bliss. Where do some doctor’s get their . . . well never mind.
I do know this; it tears a father’s heart out to be driving his ten-year-old son to the emergency room and to hear him say “I want to die!”
Thousands of Miles
It was Halloween time and we were scared. John was at his worst. The pain was intense. He wasn’t mentally coherent in his responses. He couldn’t walk at all. His legs could move, but he couldn’t judge the distance to the floor. It must have been a living hellish nightmare for him.
It was about that time that we were encouraged to go to a neuro-psychologist. The nearest description I can give of this guy is that he must have been Darth Vader’s personal physician.
Dr. DVPP was squirreled away in the corner of a large hospital. He was so much of an enigma that no one we asked knew who he was or where he was stationed. His consultation office reminded me of a small version of the back lit conference room in the empire’s death star.
He was the most cold unfeeling doctor we have encountered, to the point where he seemed unsuited for his profession. There are times when I was not sure he really was a credentialed doctor.
Dr. DVPP told us that John was faking the whole thing to get our attention. He told us that John failed the easy parts of his tests and aced the hard parts. Note that this was another oddity of this mystery illness.
What he told us in the office was diametrically opposed to his final report. It was a scathing document that labeled John as psychotic. It took us a long time to get over that insect and the long term damage he inflicted. I have no problem saying that, because if we had followed Dr. DVPP’s advice, our son could be dead.
As depressing as that experience had been, we were in good spirits. The very next week we were accepted into the Big Clinic. We figured the Big Clinic would have the answer and we would be able to bring John home on the way to a full recovery. The Big Clinic was to be the place where doctors of every discipline would form a team around John to find the answer.
To this day we remain grateful to the local person who helped us get the appointment, but this resource too became an utter disappointment and left us in a deep hole of discouragement.
Our first doctor was Dr. Bow Tie. Dr. Bow Tie was a neurologist. He was convinced that he was quite good because “I am always overbooked” he said. He studied the MRI negatives and other test results we had brought and then he took us to a small room, about six feet wide for the exam.
In one of the tests he asked John to walk across the room. This was at a time when we were carting him around in a wheel chair. John stood up and fell across the narrow space. Dr. Bow Tie’s report stated that John walked with a “normal gait”.
Since it was obviously not a neurological problem, Dr. Bow Tie went outside his field and declared that it must be a psychological problem called Conversion Disorder. Conversion is where a person with perfect legs may walk with a limp, or a person with functioning eyes believes they are blind.
Dr. Bow Tie told us “I know this is hard to hear and you don’t want to believe it, but there is no shame, to your son it is real”. Dr. Bow Tie asked if we could stay in town for a few more days so he could arrange for a Big Clinic psychiatrist to see John. Seeing our dismay, he also offered another Big Clinic doctor for a second opinion. After having such high hopes and traveling so far we muttered a feeble yes.
The next day we met Dr. Nice Gal, who was indeed very pleasant and sympathetic to our plight. However, the Big Clinic is a high-class good old boy network and Dr. Nice Gal knew her place. It appeared it was her job to throw us a bone and support Dr. Bow Tie’s diagnosis. She set us up for a CAT scan, an optometrist appointment and a sleep EEG.
I don’t recall the exact schedule, but I took John in for the CAT scan, an odd invention that looks and sounds like a giant washing machine. This found nothing but a few small cysts on the outer edge of John’s brain. Dr. Bow Tie wasn’t worried about this; after all he had already made his brilliant diagnosis.
It was Sue’s turn for the optometrist. I went to the hotel room to get some sleep, for I knew I would be up all night with John to prepare him for his sleep EEG.
Sue came back in tears. Much like John, Sue has acute hearing and while in the optometrist’s office she overheard the nurse as she pointed to John’s chart and whispered to the doctor “psych”. I suppose I should say something here to tell you how we felt at that moment, but the words fail me.
The sleep EEG is an odd test where they paste electrodes all over the patient’s brain area and run something like a polygraph. To do it right, the patient must be asleep. It was our job to keep John awake all night, so he would sleep through the test. I wonder why they don’t schedule these tests at night when it is more natural to sleep.
It is here where I want to interject our gratitude toward the ordinary people we have met along the way. I will start with all of the people across this nation who have sent us their prayers. People who don’t know us have John on their prayer list and while they will never know the results, they have given us strength when there was no strength to be had at all.
We have met people in doctor’s offices whose own children were much worse off than John and yet they have given us the right words of encouragement, just when we needed them most.
There was a Bellhop in our hotel adjacent to the Big Clinic, who took John in as if he were his own child. He joked with John and encouraged him in any way he could. He even loaded up John in his wheel chair, put a coat on him and raced him around the block, so John could enjoy the snow. We will ever be grateful for this kind man, but I won’t mention him by name least we get him in trouble with his employer.
The afternoon before the EEG test, we went to the Big American Mall to get our minds off the disappointments. There we met a person working a small stand selling toys. He talked to John for quite a while and then gave him one of the toys, a ball on a string that one can throw and pull back. He gave us a few words of encouragement as well. We did meet our share of “angels” along the way.
That night I wheeled John through the halls of the hotel and the strange city beneath that connects it with the Big Clinic. There we met the citizens of the wee hours, the maintenance folks, security people, the doctors who had worked far into the night and the overwhelmed patients, who just needed a quiet place to take it all in.
John and I found a hallway where we could throw the ball without disturbing anyone else. I’m sure the security folks enjoyed watching it on their monitors. We talked about the events of the past two days and I could see he was trying his best to be patient with all of the accusations. Knowing you are perfectly sane when you are being told by the supposed best doctors in the world that you are not is a hard enough battle. Imagine trying to fight back when you are only 11 years old.
I must mention here that in general, the Big Clinic staff was remarkably kind and helpful. The staff that handled the sleep EEG was no exception. They fitted John with a cap of electrodes instead of the usual pasting of patches to his head, this seeming to be the better choice.
The test began as usual, but something happened to John midway through. He was attacked by some kind of horrible pain. He cried like a person who had been tortured and had had enough. Normally and unusually strong under these trials he broke down in a mournful wail. We had never heard him cry like that. Because of the test electrodes, all Sue could do was to let him squeeze her hand. Later, in the hotel room, John told us that he felt someone holding him. It was not us.
On Thanksgiving Day we drove home.
Our main source of hope dashed and our local sources exhausted, we continued to search elsewhere for a cure.
On the Internet, we found what I will call the Big Pain Clinic. As it turned out their facility was smaller than their website, but they had a good variety of doctors dealing exclusively with head pain. It was a four-hour drive to get there, but our first visit was positive. The neurologist listened intently to our story and had some interesting ideas to try. As a standard part of their procedure, we also spent some time each visit with a staff psychologist.
On the first visit, it took about ten minutes for the staff psychologist to figure that there was nothing psychologically wrong with John and he spent the rest of the 30 minutes swapping jokes with John and discussing his attempts to get on a national game show.
Our next visit was less inspiring. We were assigned a new neurologist. The one we liked from the first visit had quit the Big Pain Clinic and we were assigned to a guy I’ll call Dr. Wrong. Dr. Wrong had many of the traits of Dr. Bow Tie. We were disappointed to lose the first neurologist, but Dr. Wrong seemed intelligent enough, so we decided not to judge on the first impression.
The third visit was a total disaster. We saw the psychologist first, a different one this time (there seemed to be quite a turnover at the Big Pain Clinic). The new psychologist I’ll call Dr. Chicken. We made the mistake of sharing what Dr. DVPP had said about faking the whole thing, so she ran some tests on John and noted some slow responses, but nothing to raise concern.
After lunch we saw Dr. Wrong. He was very tense and spoke to us as though he was trying to hold back some anger. Dr. Wrong told us that Dr. Chicken had told him that John had failed all of her morning tests and had determined that John was faking. He told us that John may “like the attention that he was getting when he came to see the doctors” and that we didn’t need to bring John back for treatment.
We were in shock at his accusations. That wasn’t at all what we had heard from Dr. Chicken. After we paid we asked to see Dr. Chicken to find out what she had said to Dr. Wrong. She did see us after her next patient left and seemed surprised to hear what we reported.
Dr. Chicken said she would talk to Dr. Wrong and clear up the situation. We don’t know if she talked to Dr. Wrong or not, but a few months later we got a real shock.
There it was, laid out before us in a meeting with a local school official. The Big Pain Clinic had determined that John had “factitious” or “conversion” disorder. We had no idea that the Big Pain Clinic had made that diagnosis. No one had reported that to us. We were mortified and embarrassed beyond description.
At first, we thought that Dr. Chicken was being used by Dr. Wrong to cover his embarrassment over not being able to help John, but a follow-up visit proved her part.
We had been treated so poorly at this clinic that I decided to write to the clinic’s head Dr. Savior. As a manager myself, I would want to know if any of my employees had treated a customer poorly.
Dr. Savior invited us to return and talk to him directly. He promised to examine John himself at no charge. We agreed and set the appointment. We also brought along a good family friend, who was also a registered nurse. She had witnessed one of John’s seizure-like episodes and could perhaps supply useful professional information to Dr. Savior.
What we found when we got there was an ambush. No one was going to besmirch his Big Pain Clinic. He was clearly enraged at our observations and was out to smash our insolence. We took a video of John’s seizure episodes, which he said he would watch, but laid aside like a used napkin.
When we introduced our friend to share her observations, he immediately attacked her credentials, saying that she was not qualified to make any statements related to neurology.
Hard as it was, we kept our cool, but every time we said anything on John’s behalf Dr. Savior accused us of being hostile. He was the one who was rude and angry. After a cursory examination, Dr. Savior declared Dr. Wrong was right and implied that we had better get used to it and quit making such wild accusations against his sacred institution.
On the way out, we passed Dr. Chicken in the hall. It was clear by her reaction that she had not defended us and was embarrassed to be seen.
Well, we didn’t have anything to lose at this point. John was no better and if anything, worse. It was suggested that we try a visit to the Palmer College of Chiropractic in Davenport, Iowa.
On the whole, the Palmer Clinic was not able to cure John’s illness, but this trip was worth every penny and every mile. The staff was friendly and helpful. The doctors were amazing.
We were the first appointment of the day for Dr. Kenneth Parker. After hearing John’s story Dr. Parker lit up and became very energized. He was bound and determined to find a cure for John and asked us to stay for some testing. Dr. Parker had a full day of bookings, but he worked the spaces in between for John.
The whole clinic seemed to gather around us. You could sense the rumors passing in the hallway as more people were asked in to help John.
Dr. Parker called in Dr. Shayan Sheybani, the head of the clinic to ask his advice. Late that evening, Dr. Sheybani did a treatment on John for the pain at the base of his skull. It worked and for the first time, John had relief from that part of his pain.
We were the last ones out as the clinic closed. They had done all that they could. John was not cured, but he certainly felt better and our souls had experienced the first real nourishment in over a year.
Sometimes doctors are skilled at the methods of healing, but lose sight of the spirit of the thing. The spirit of healing is the first step toward the actual healing. Without it, all of the skills in the world are useless. We saw more of that spirit at the Palmer Clinic than any place we had been.
Though still far from a cure, this trip was the first step from the road of discouragement, to the road of hope.
Best of all, this trip led us to Dr. John.
Dr. John Lewis is a graduate of Palmer College and has an office in nearby Tipton, Indiana. Dr. John, as we came to call him, charged us a very modest fee for each visit and never tried to gouge us in any way. While John’s cure didn’t lie in the field of Chiropractic, Dr. John was able to give our son a considerable amount of relief from some of the pain.
The visits would usually follow this pattern. John would get out of the car and pick out some unusual rock from Dr. John’s parking lot. Sue and John would go into the office, a converted house and wait for a short while in what I would describe as a modern country comfortable waiting area. If others were waiting, it wasn’t unusual to strike up a conversation with the friendly folks waiting their turn.
In the treatment room, Dr. John would discuss with Sue her observations since the last visit and then the serious work would begin. John would show Dr. John the unusual rock and he would admire it and then make some comment about how John was going to put him out of business by taking all of the rocks out of his parking area.
By this time frame, John had begun to fight back the pain by conjuring up original jokes. John would try out his latest conceived joke and Dr. John would laugh and give his honest evaluation and maybe share a new one he had heard. Then, of course, he administered the chiropractic treatment.
Dr. John was more a big brother and friend than a mere doctor. John’s illness was yet to be fully diagnosed, but he did give our tortured son some relief.
Most of all Dr. John
believed us, and he had faith in John.
John had been on the honor roll the whole time he was in school. He was especially good in math and would often, in his daily activities, work a math problem in his head just for entertainment.
The illness hit John pretty hard in the second semester of his fourth grade year at St. Mary’s. He had a pattern of getting worse just after lunch and was in pain every day. John missed about half of the schooling till the end of the year, through lost days and partial days.
John was only able to attend 24 days of his fifth grade year. On one day that he was able to attend, the class had to take a test. John scored better on that test than most of his classmates and he had missed most of the days that covered the material.
It soon progressed to where we had to take him out of school altogether. To compensate for this we approached the local public school system to enroll in a program they called “homebound”. This was a program for students who had a medical reason for being unable to attend regular school. A tutor would come to the student’s home two or three days a week to keep the student in the game.
It had a great beginning. Some days were better than others and some days John was too sick to see her, but the tutor was a wonderful woman. She was very good for John’s spirits and was able to keep him reasonably close on his studies.
Then the system came crashing down on us. To continue the program John had to go through an exam by the school psychologist, Dr. Stress. Dr. Stress ran some “interesting” tests on John, which on the whole, failed Dr. Stress’ expectations.
When he looked at the inkblots, John saw bugs, rather than the happy children he was supposed to see. When he drew a picture that showed the expansion lines in the driveway as he played basketball, he was putting himself in a box of isolation. When he was asked if he had friends over to play, good old literal John said “no”. There were no other eligible playmates in our old neighborhood and when he did have someone over it was usually one at a time. Friends is plural, therefore the answer is “no”.
The killer was when Dr. Stress came across Dr. DVPP’s report. She decided that John was self centered, “narcissistic” was her word and undergoing too much stress. Her recommendation was that he should take stress management sessions, get over it and go back to school.
Dr. Stress also suggested that we might be guilty of Munchausen’s by proxy. This was a totally reckless charge that could have led to us being jailed and our children taken away. Not armed with the history of John’s illness, some kind but unwitting foster parents would have taken John away from the diet and treatments that eventually saved his life.
All of this was paraded before a meeting between the representatives of the public school system and the staff of St. Mary’s. Dr. Stress was really stressed. It looked like she was afraid that we would explode and become violent. Instead we were completely helpless to defend our position. We knew she was wrong, but we had no diagnosis to refute her charges.
The results were that we were mortified before the St. Mary’s staff. That we could handle, but poor John, who loved school and his friends, was out. He could no longer receive homebound tutoring, nor was he able to continue at St. Mary’s.
Add to that, John, was now listed as a psych case and we were falsely accused of encouraging John’s illness to gain attention and sympathy. All of this in front of the St. Mary’s staff. Dr. Stress was a respected school psychologist and we were the parents of a child with an illness that even the Big Clinic had labeled a psych problem. What would you think?
I do want to interject this, Mr. Mathena, the St. Mary’s principal at the time of the meeting, was very supportive of John and his situation. He really stuck his neck out for John.
We had such high
hopes that John would recover enough to return to school the next year, but it
was not to be.
Next year, St. Mary’s had a new principal who did not know John, or what he was like before all of this cut loose. That school year, she decided that John could not be allowed to attend St. Mary’s. The school’s governing body could not allow John’s sporadic attendance to adversely affect the overall statistics by which St. Mary’s was rated.
This was a bitter day for us. We had hoped that John would recover enough physically and scholastically to rejoin his classmates.
Sue called me with the bad news just before I was to attend a department meeting. As the meeting was beginning someone asked what was wrong and I lost it. They reminded me that it was important that John get well first and then we could worry about school.
I can’t describe how hard it has been to see John’s friends move on without him. His friends are now in high school. They are going through all of the social activities of a normal teenager. Next year they will be driving. John is still in grade school.
With the homebound training gone, we looked for ways to keep John current, hoping that someday he could catch up and rejoin his friends. We scoured the Internet and the local library for resources to teach John. It was tenuous at best, so we looked for a good home study course. We finally settled on the A Beka video schooling.
A Beka has a neat format that is a video recording of an actual class. John watches the teacher and responds as if he were a part of the class he sees on the screen. He often talks about the various classmates as though he was a physical part of the classroom.
We also noted that John’s curriculum is about a grade level above the regular schools. John can start, stop and review as needed and can complete most days’ work in four hours. Some days he presses on through the pain, determined to complete the work, so much for John being sick to get out of school. Some days he can’t do the work at all, but others he can double up. Overall John is about a month behind the desired A Beka schedule.
Will he graduate at 18? Probably not. Does it really mater? No. Have peace with today my friends. Tomorrow will come when it’s good and ready. What is normal to the world may not be normal to your situation. You can make plans, but don’t be driven by them. Never give up, but likewise, realize that what you are going through now is perfectly normal for your current situation. Until a better “normal” comes along, live in this one.
It is OK to breathe, eat, live and laugh. There will be bitter times and sacrifices to make, but living in sackcloth and ashes will only make the situation worse and rain guilt on your already wounded child.
In the summer of John’s fifteenth year, Sue said to him, “John’ I’m so sorry you’ve had such a terrible life.” John responded, “Oh, it’s not been so bad”. Narcissistic.
Dr. Guyer a New Alternative
Ann Harmeson Hardacre is among the cream of society in our town. Now retired, Ann had the studio where Jenny took dance. Generations had passed through this hallowed academy and Ann is widely admired. The nice thing about Ann is her kind and genuine interest in other people.
Ann has suffered herself with allergies for several years and had come across a doctor who came highly recommend. Dr. Dale Guyer.
I fought the idea for a while; having heard that Dr. Guyer’s service is very expensive. Finally, when there seemed to be no other viable option I gave in and we made the appointment. It was very expensive and little of it was covered by insurance, but it saved John’s life. Once again Sue was right.
When we first met Dr. Guyer we thought, “Where’s the doctor?” This “kid” walked in. He had fairly long jet-black hair, a broad smile and looked all of twenty. It turns out Dr. Guyer was born in 1960 and has had extensive training in a number of specialties.
The first thing we realized about him was that he is highly intelligent. One of the great qualities of Dr. Guyer is his attention to details. While other doctors would skim over the results summary of John’s various tests, Dr. Guyer read the clues within the reports. While a certain item may be listed as “normal”, it may have been just barely so and thus a previously ignored factor.
After a series of his own tests, Dr. Guyer recommended a wheat free, dairy free, sugar free diet for John. As hard as that regimen was, it was the turning point and provided a dramatic reduction in the factors that were destroying John’s body.
John’s height, weight and even his fingernails and hair had not grown at normal rates. For the first time in two years John began to grow. We didn’t fully understand at the time, but this change in diet kept John from going physically over the edge. Without the change, John would have literally starved to death. There is more to follow on this item.
Dr. Guyer tried various treatments to ease John’s suffering and some helped for various lengths of time, but there was, by his own admission, “something missing”. This is where I have a great deal of respect for Dr. Guyer. When he hit a roadblock, he didn’t try to blame John, or fuss over his bruised ego. He kept looking and wasn’t afraid to defer to another doctor.
In the fall of 2003,
he did just that. Dr. Guyer referred us to the renowned neurologist Dr. David
Pearlmutter in Naples, Florida, to find that “something missing”.
It’s a long way from Anderson, Indiana to Naples, Florida. We had an appointment to see Dr. Pearlmutter the morning of December 23, 2003. We had made provision to stay through Christmas morning in the event of the need for a follow-up on the 24th.
From the moment we checked into the motel, we learned of his magic. We were told that people had come from all over the world to Dr. Pearlmutter seeking help, and had experienced amazing results.
In the waiting room, another patient told us “you came to the right place, this man is a HEALER”.
Dr Pearlmutter spent about 20 minutes with us pouring over John’s “suitcase” of reports and tests. We showed him the video that Dr. EC had dismissed. He listened to more of our story, asked some questions and said, “I’m sure I know what this is”.
He ordered an Antigliadin test and sure enough the results showed that John had a gluten intolerance condition called Celiac!
We were stunned. For the first time in almost four years, John had a true diagnosis.
Dr. Pearlmutter even asked that we give him a copy of our tape to show his medical students what he called a classic example of a celiac reaction.
Celiac is brought on by an adverse reaction to gluten. It damages the small intestines’ ability to pass the digested liquid nutrients on to the organs of the body. John was literally slowly starving to death. It is controlled by a lifelong adherence to a gluten free diet. In about six months most patients recover from the damage and are able to live fairly normal lives.
Dr. Guyer’s diet plan was close enough to the celiac diet to keep John from going over the edge, but it was not a complete celiac diet. Not bad at all for an educated guess.
Left unchecked the condition becomes extreme and can lead to the very neurological type of symptoms that John was experiencing.
Celiac is genetic. We had Jenny tested. Sure enough, she has a gluten intolerance as well. For some reason it hadn’t reached the levels that John was experiencing. She had the “normal” stomach and head aches that the average Celiac has.
Celiac can sometimes lead to lymphoma cancer, which had afflicted Sue’s dad. He too, had stomach and head pain all of his life and may have been a Celiac. Had this been discovered in his time, he might have been with us today. Instead, we lost Sue’s dad to brain cancer about six months before John’s birth.
John Prieshoff was a good man and his namesake is poorer for never having known him.
If I could emphasize one idea it would be this. When a patient comes to a neurologist with head pain that resembles migraines, please start with a simple Antigliadin test.
The damage to John’s body has been extensive, due to the lack of an early diagnosis. John is on a strict celiac diet and Dr. Guyer has put him on nutritional IVs to supplement John’s inability to supply enough nutrients to his organs.
Each month we seem to learn of some new damaging ingredient in John’s diet that we hadn’t considered and we are both going blind from reading the fine print on every grocery item we buy.
The diet and IV treatments are working and John is slowly recovering. While there are still many set backs, there is also noticeable improvement.
He no longer has the seizure like episodes and has grown considerably. He is able to do his home studies most days and has been able to double up on his studies on several days.
On the down side, John still fatigues easily and has some level of constant head pain and some days are still just plain bad. As I write this, John has been in horrible pain for two days with no relief in sight.
Will he ever be able to live a normal life? Time will tell, but we don’t worry about time around here. God has his own plans for John and we have learned to stay out of the way.
Of one thing I can be certain. We are the proud parents of one very special young man. We are also the proud parents of a special young lady, who has been robbed of her share of parental attention and has continued to defend and love her brother.
I am humbled by the perseverance of my wife.
Boiled down, it was Sue, the good mother, who took blow after blow in the ring and continued to defend her child. It was Sue who saved John and who has sacrificed the most outside of John himself.
And what of John? Narcissistic? NO! Psychotic? NO! Too lazy or afraid to go to school? NO! A courageous, kind, enduring young gentleman? YOU BETCHA!
John McAllister age 16
John will be 19 years old on April 20, 2008 and has made a nearly full recovery. He will always be on the Celiac diet and he still goes to Dr. Guyer for nutritional IV treatments 3 or 4 times per year when the pain and weakness overruns him. He still has a constant low grade headache which gets worse as he needs another IV treatment. John is well over 6 feet tall, has a fine bass voice and plays piano. He is home schooling to finish his high school studies and has all the promise of living a reasonably normal life.
John McAllister age 18