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Celiac
Mystery Head Pain
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CELIAC
Tuesday, 23 January 2007
John's Story - Misdiagnosed - too Young to Fight Back
John?s Story 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. The questions: ? Have you traveled thousands of miles, spent thousands of dollars and had scores of tests run on your child? ? When the tests all come out negative, do these doctors label your child with an ?emotional? or psychological problem? ? Do you know in your heart of hearts that these diagnoses are wrong, but you still can?t find the cause of your child?s pain? ? Are you on the verge of giving up? DON?T! 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. - Don McAllister Just a father Chapter 1 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 parenting. Chapter 2 Early Warning 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. Chapter 3 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. Chapter 4 January, 2000 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. Chapter 5 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. Chapter 6 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!?


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. Chapter 15 Too Late? 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

Posted by in4/nat_vet_hist_arch at 4:11 PM EST
Updated: Tuesday, 23 January 2007 4:07 PM EST
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