The Beginning of Jayde's Journey
This post was written in the summer of 2016. It is the beginning of Jayde's Journey. Little did I know when I wrote it that POTS should have been the least of our worries, but each time I read it, so much makes sense.
I was sitting in my kitchen, talking with two dear friends, and they encouraged me to share the recent journey our family has experienced. From this conversation, I knew I needed to share Jayde's journey. Thus, #jrsjourney grew wings. This post is a mother's/caregiver's view of what living with POTS is like.
I once believed our journey began the first week of November 2009, when Jayde became ill with the Swine Flu, but the swine flu only made the invisible more visible. Jayde was two when she had her first migraine. When I was six, I encountered my first one. So, I knew how debilitating and horrible they were. At first, the thought that she could be experiencing a migraine at the age of two did not seem possible. Until she said, "Mommy, turn out the light." It was the middle of the day, and no light was on. I responded, "I can't turn off the sun." She cried, "No, it makes my head ouchie." Jayde was four when she began seeing a neurologist. After scans and an MRI, she was diagnosed with migraines. She would throw up for seven or eight hours, and as quick as the vomiting began, it was over. Other than being exhausted and needing fluids, she would be fine. I am not the type of mother to call or run to the doctor whenever my child has a runny nose. We discussed these episodes with her pediatricians, and neither seemed concerned. Jayde was in the lower percentile for height and weight but was not underweight and otherwise seemed healthy.
It was a few weeks after her eighth birthday. The swine flu would take hold of her for the next eight weeks. As quickly as she would begin to show signs of bouncing back from her illness, it would grab her as if to say, "Not so fast. I am not ready to leave yet." The fever and extreme fatigue were the worst part of her illness. She was my cuddle bug, running a high fever for days without a break. Motrin, the only medicine ever successful in bringing down her fever, was scarce in our town. The grocery stores were out, Walmart was out, and all the pharmacies were out. Even the Rutter's convenience store was out of medicine. The Swine Flu had hit our area with a vengeance. Chris drove around from store to store and pharmacy to pharmacy, searching high and low. He finally found the last bottle at the Rutter's at the opposite end of our town.
A few days after we thought Jayde was on the road to recovery, she developed a severe respiratory infection. Her doctor said it was a secondary infection caused by the flu. It would be New Year's before she would feel somewhat normal again. However, she struggled well into March. Until now, Jayde had been a typical little girl. She had a prior history of migraines, reoccurring vomiting episodes, stomach aches, a few sinus infections, and reoccurring strep throat. We noticed that after she recovered from the Swine Flu, her health never seemed to return to normal. Her migraines were worse and more frequent.
The joint pains she experienced since she was a toddler were daily and more intense. She was experiencing anxiety, heart palpitations, chest pains, and stomach pains. She was sensitive to heat, and she was fatigued all the time. Except for the migraines, all her symptoms would be explained away by her doctors. I called these unexplained symptoms ghost ailments. They were elusive and invisible, and no one seemed to have an explanation for what we saw happening to our daughter. The only symptom that made any sense was her sensitivity to heat. As a true redhead with a fair complexion, Jayde's extreme sensitivity to the heat did not seem abnormal. Yet, her heat sensitivity was severe. Too long in the sun or heat, like thirty minutes, and a migraine accompanied by vomiting was sure to ensue. The ghost ailments would come and go without discrimination or warning. With each new case of strep throat or a sinus infection, her symptoms became worse. The confusing addition was that her recovery period took longer as time wore on, and the fatigue she experienced was relentless. By the time she was nine, she could no longer continue her dance classes. Once her menstrual cycle began, it was guaranteed she would be bedridden every month for several days.
The insensitive comments from friends and family would help fuel the internal anxiety I was battling, which eventually would pale compared to the anxiety that engulfed Jayde. These comments became my canned responses, "Yes, I know she has missed a lot of school. No, I do not think she is faking it. Yes, I am aware she gets sick a lot. No, I do not care if you think us taking her out of school for a much-needed vacation is a mistake." These critical individuals were not living my life, our family's, or our baby girl's life. They were not witnessing what was right in front of our eyes. They were not the person who was sitting up with her all night while she vomited for hours without end. They were not the ones questioning whether we should head to the ER for fluids. They were not the ones who felt helpless while sitting on the bathroom floor or laying in her bed with her, cradling her in their arms, as her bright blue eyes seemed dull and lifeless. They were not the ones who did not have an answer when she would muster the strength to look at me and ask, "What is wrong with me? Why am I so sick all of the time?"
My mother's intuition knew something was not right with our daughter, but the doctors, time and time again, told us she was okay. Her chest pains were dismissed, "It's just heartburn. We should try Zantac." On the next visit, I told her PCP, "You were wrong. Zantac did nothing to help. She is getting worse." The routine perplexed look, "Hmm, do you want to try something else?" Followed by my frustrated look, "NO, I want you to actually tell me why my daughter is having chest pains." Jayde's joint pains were chalked up to, "It's just growing pains. Try more exercise." Never once investigating why this was an ongoing issue every day for several years. "Her palpitations and heart sound normal to me. Many children become anxious coming to the doctor's office. I'm sure that is why her heart rate is elevated." (Except her heart does not sound normal, her heartbeat has a distinct abnormal rhythm, which her cardiologist would inform us of several years later.) Her anxiety, "Well, she seems depressed. We should put her on Zoloft." It's a wonder I didn't leave in handcuffs for this one, "At the age of twelve? NO f...ing way!" Her extreme fatigue is still unexplainable. So let's test her for mono three times in less than eighteen months. Actually, she was tested twice. The third time, I told her PCP, "Shred the damn lab slip, do your job, and figure out what is wrong with my daughter.,,
"Maybe her blood sugar is off. We should check her for juvenile diabetes." No, that wasn't it, either. "Perhaps it is Lyme disease." Really!?! None of those. Let's stick her some more and check for thyroid issues. Big surprise, it was not her thyroid. Then there was the trip to GBMC hospital when they were convinced she had Lupus. It was as if they were throwing anything at the wall to see what would stick. Please do not misunderstand. I was happy to hear my daughter did not have Lupus, Lyme disease, Mono/Epstein Barr, diabetes, or thyroid issues. Yet, while it was not one of those illnesses, something was obviously wrong. With each office visit and blood test, her doctor consistently told me, "She seems fine." Except she wasn't!!! We understand medicine is a practice, and no doctor gets it right one hundred percent of the time. Yet, no doctor was willing to look outside the box or open their minds to the possibility of something unusual or rare. No physician was willing to put their ego aside and admit they didn't understand what was wrong. They were more comfortable gaslighting my daughter by telling her, "This seems to be a psychological issue." I vividly remember driving home and Jayde asking me, "What does she mean this is a psychological issue?" I wanted to cry but saved my tears for later when I was alone. I've always taught my children to be honest, no matter what they may fear. I despised having to honestly answer her question. "She thinks this is all in your head, or you are making this up." She began to tear up, "You don't think that, do you?" We sat in front of Rita's as I made a vow to my Baby Girl. "NO! Not now, not ever. I promise I will not stop until we figure out what is wrong with you."
Fast forward to March 2016, with years of no answers, and here we are. It was a Wednesday afternoon; Jayde had stayed home the previous day because of a migraine. She was resting on the sofa when she arose to walk into the kitchen when I heard the frightening sound. It was a deafening thud. She had fainted. As quickly as she had gone down, she was back up again. She was shaken and confused. I called the doctor's office, but we could not be seen immediately. The receptionist suggested we go to urgent care. However, because of our prior experiences, we despise urgent care, their lack of care, and the idea of starting at square one. She now seemed fine. No dizziness, no fever, just a little frightened. I maintained a close watch on her as we waited a day to be seen by a doctor in our family practice. She had seen Dr. Bhatia for the first time in December 2015 for a sinus infection. During the December visit, she noted Jayde's elevated heart rate and checked her oxygen levels, which were fine. Before this appointment, not one doctor had been concerned over Jayde's heart rate. When she fainted, Dr. Bhatia was the apparent choice for whom she should see. Her initial diagnosis, Jayde has Tachycardia. She needs to be seen by a pediatric cardiologist. The sooner, the better. It took almost four weeks to meet Dr. Joel Brenner, not terribly long by most standards, but it felt more like a year. After much research, he was not our initial choice, but he is the chief of Pediatric Cardiology at Johns Hopkins and had an opening. Sometimes, things work out for the best, even if we cannot see it initially. Dr. Brenner was an amazing fit for us and, more importantly, for Jayde. This is where our journey of the unknown would end while a new journey of discovery would begin.
On March 30, 2016, Jayde, at the age of fourteen, was diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS. After years of searching with no answers, there came a great comfort with her diagnosis. We finally had a name for the invisible beast we had been fighting. There is no cure, only medications and lifestyle changes to help control her symptoms. POTS is the most common form of Dysautonomia (pronounced dis-auto-know-me-a), affecting between 500,000 and 1 million individuals in the United States, with most patients having multiple forms of Dysautonomia. POTS is generally brought on by a viral infection, head injury, severe stress, or surgery. It is defined as a type of Dysautonomia, a malfunction of the Autonomic Nervous System. The ANS automatically controls our heart rate, blood pressure, gastrointestinal motility, and other automatic functions of the body. Think of it as the unconscious areas of our bodies, which, when they are working correctly, we do not give it much thought. A POTS patient experiences an extreme increase in their heart rate upon sitting and standing. For example, the typical adolescent's heart rate is between 60 and 80 bpm. Jayde's average heart rate is around 125 and spikes to 140 bpm and up to 180 bpm.
The symptoms of POTS are dizziness or pre-syncope (almost fainting), syncope (fainting), palpitations, headaches/migraines, brain fog or difficulty in thinking, debilitating fatigue, a sense of anxiety, shakiness, visual problems (graying, tunnel or glare), GI problems (nausea, diarrhea, pain), sweating, chest pains, insomnia or difficulty sleeping well, worsening of symptoms with bright lights or loud sounds, purplish discoloration of the skin due to blood pooling in hands and feet and bladder problems. The factors that worsen POTS: prolonged heat exposure, after eating - especially refined carbohydrates, sugar, white flour, etc., standing up quickly, dehydration, time of day (especially after waking), menstrual cycle, hot showers, deconditioning, prolonged bed rest (this one is a damned if you do and damned if you don't scenario), alcohol (as it dilates the blood vessels), excessive exercise and illnesses such as a viral infection or after an operation.
Some POTS patients search for answers 10, 12, and even 15 years before their diagnosis. On average, it takes between six and seven years for most POTS patients to receive a diagnosis. Our search took ten years. It is a bold reminder that there is no better advocate for your child than you. I have several friends and family members who have battled chronic illnesses and even cancer on behalf of their children. Until you are in the midst of it yourself, you cannot imagine the depths you will go to protect that fragile life entrusted to your care. Your children are fighters, and you are warriors; you have my utmost respect and love!!! I knew from the day she was born that Jayde was strong and she is a fighter. The invisibility of POTS has made that all the more visible.
I was sitting in my kitchen, talking with two dear friends, and they encouraged me to share the recent journey our family has experienced. From this conversation, I knew I needed to share Jayde's journey. Thus, #jrsjourney grew wings. This post is a mother's/caregiver's view of what living with POTS is like.
I once believed our journey began the first week of November 2009, when Jayde became ill with the Swine Flu, but the swine flu only made the invisible more visible. Jayde was two when she had her first migraine. When I was six, I encountered my first one. So, I knew how debilitating and horrible they were. At first, the thought that she could be experiencing a migraine at the age of two did not seem possible. Until she said, "Mommy, turn out the light." It was the middle of the day, and no light was on. I responded, "I can't turn off the sun." She cried, "No, it makes my head ouchie." Jayde was four when she began seeing a neurologist. After scans and an MRI, she was diagnosed with migraines. She would throw up for seven or eight hours, and as quick as the vomiting began, it was over. Other than being exhausted and needing fluids, she would be fine. I am not the type of mother to call or run to the doctor whenever my child has a runny nose. We discussed these episodes with her pediatricians, and neither seemed concerned. Jayde was in the lower percentile for height and weight but was not underweight and otherwise seemed healthy.
It was a few weeks after her eighth birthday. The swine flu would take hold of her for the next eight weeks. As quickly as she would begin to show signs of bouncing back from her illness, it would grab her as if to say, "Not so fast. I am not ready to leave yet." The fever and extreme fatigue were the worst part of her illness. She was my cuddle bug, running a high fever for days without a break. Motrin, the only medicine ever successful in bringing down her fever, was scarce in our town. The grocery stores were out, Walmart was out, and all the pharmacies were out. Even the Rutter's convenience store was out of medicine. The Swine Flu had hit our area with a vengeance. Chris drove around from store to store and pharmacy to pharmacy, searching high and low. He finally found the last bottle at the Rutter's at the opposite end of our town.
A few days after we thought Jayde was on the road to recovery, she developed a severe respiratory infection. Her doctor said it was a secondary infection caused by the flu. It would be New Year's before she would feel somewhat normal again. However, she struggled well into March. Until now, Jayde had been a typical little girl. She had a prior history of migraines, reoccurring vomiting episodes, stomach aches, a few sinus infections, and reoccurring strep throat. We noticed that after she recovered from the Swine Flu, her health never seemed to return to normal. Her migraines were worse and more frequent.
The joint pains she experienced since she was a toddler were daily and more intense. She was experiencing anxiety, heart palpitations, chest pains, and stomach pains. She was sensitive to heat, and she was fatigued all the time. Except for the migraines, all her symptoms would be explained away by her doctors. I called these unexplained symptoms ghost ailments. They were elusive and invisible, and no one seemed to have an explanation for what we saw happening to our daughter. The only symptom that made any sense was her sensitivity to heat. As a true redhead with a fair complexion, Jayde's extreme sensitivity to the heat did not seem abnormal. Yet, her heat sensitivity was severe. Too long in the sun or heat, like thirty minutes, and a migraine accompanied by vomiting was sure to ensue. The ghost ailments would come and go without discrimination or warning. With each new case of strep throat or a sinus infection, her symptoms became worse. The confusing addition was that her recovery period took longer as time wore on, and the fatigue she experienced was relentless. By the time she was nine, she could no longer continue her dance classes. Once her menstrual cycle began, it was guaranteed she would be bedridden every month for several days.
The insensitive comments from friends and family would help fuel the internal anxiety I was battling, which eventually would pale compared to the anxiety that engulfed Jayde. These comments became my canned responses, "Yes, I know she has missed a lot of school. No, I do not think she is faking it. Yes, I am aware she gets sick a lot. No, I do not care if you think us taking her out of school for a much-needed vacation is a mistake." These critical individuals were not living my life, our family's, or our baby girl's life. They were not witnessing what was right in front of our eyes. They were not the person who was sitting up with her all night while she vomited for hours without end. They were not the ones questioning whether we should head to the ER for fluids. They were not the ones who felt helpless while sitting on the bathroom floor or laying in her bed with her, cradling her in their arms, as her bright blue eyes seemed dull and lifeless. They were not the ones who did not have an answer when she would muster the strength to look at me and ask, "What is wrong with me? Why am I so sick all of the time?"
My mother's intuition knew something was not right with our daughter, but the doctors, time and time again, told us she was okay. Her chest pains were dismissed, "It's just heartburn. We should try Zantac." On the next visit, I told her PCP, "You were wrong. Zantac did nothing to help. She is getting worse." The routine perplexed look, "Hmm, do you want to try something else?" Followed by my frustrated look, "NO, I want you to actually tell me why my daughter is having chest pains." Jayde's joint pains were chalked up to, "It's just growing pains. Try more exercise." Never once investigating why this was an ongoing issue every day for several years. "Her palpitations and heart sound normal to me. Many children become anxious coming to the doctor's office. I'm sure that is why her heart rate is elevated." (Except her heart does not sound normal, her heartbeat has a distinct abnormal rhythm, which her cardiologist would inform us of several years later.) Her anxiety, "Well, she seems depressed. We should put her on Zoloft." It's a wonder I didn't leave in handcuffs for this one, "At the age of twelve? NO f...ing way!" Her extreme fatigue is still unexplainable. So let's test her for mono three times in less than eighteen months. Actually, she was tested twice. The third time, I told her PCP, "Shred the damn lab slip, do your job, and figure out what is wrong with my daughter.,,
"Maybe her blood sugar is off. We should check her for juvenile diabetes." No, that wasn't it, either. "Perhaps it is Lyme disease." Really!?! None of those. Let's stick her some more and check for thyroid issues. Big surprise, it was not her thyroid. Then there was the trip to GBMC hospital when they were convinced she had Lupus. It was as if they were throwing anything at the wall to see what would stick. Please do not misunderstand. I was happy to hear my daughter did not have Lupus, Lyme disease, Mono/Epstein Barr, diabetes, or thyroid issues. Yet, while it was not one of those illnesses, something was obviously wrong. With each office visit and blood test, her doctor consistently told me, "She seems fine." Except she wasn't!!! We understand medicine is a practice, and no doctor gets it right one hundred percent of the time. Yet, no doctor was willing to look outside the box or open their minds to the possibility of something unusual or rare. No physician was willing to put their ego aside and admit they didn't understand what was wrong. They were more comfortable gaslighting my daughter by telling her, "This seems to be a psychological issue." I vividly remember driving home and Jayde asking me, "What does she mean this is a psychological issue?" I wanted to cry but saved my tears for later when I was alone. I've always taught my children to be honest, no matter what they may fear. I despised having to honestly answer her question. "She thinks this is all in your head, or you are making this up." She began to tear up, "You don't think that, do you?" We sat in front of Rita's as I made a vow to my Baby Girl. "NO! Not now, not ever. I promise I will not stop until we figure out what is wrong with you."
Fast forward to March 2016, with years of no answers, and here we are. It was a Wednesday afternoon; Jayde had stayed home the previous day because of a migraine. She was resting on the sofa when she arose to walk into the kitchen when I heard the frightening sound. It was a deafening thud. She had fainted. As quickly as she had gone down, she was back up again. She was shaken and confused. I called the doctor's office, but we could not be seen immediately. The receptionist suggested we go to urgent care. However, because of our prior experiences, we despise urgent care, their lack of care, and the idea of starting at square one. She now seemed fine. No dizziness, no fever, just a little frightened. I maintained a close watch on her as we waited a day to be seen by a doctor in our family practice. She had seen Dr. Bhatia for the first time in December 2015 for a sinus infection. During the December visit, she noted Jayde's elevated heart rate and checked her oxygen levels, which were fine. Before this appointment, not one doctor had been concerned over Jayde's heart rate. When she fainted, Dr. Bhatia was the apparent choice for whom she should see. Her initial diagnosis, Jayde has Tachycardia. She needs to be seen by a pediatric cardiologist. The sooner, the better. It took almost four weeks to meet Dr. Joel Brenner, not terribly long by most standards, but it felt more like a year. After much research, he was not our initial choice, but he is the chief of Pediatric Cardiology at Johns Hopkins and had an opening. Sometimes, things work out for the best, even if we cannot see it initially. Dr. Brenner was an amazing fit for us and, more importantly, for Jayde. This is where our journey of the unknown would end while a new journey of discovery would begin.
On March 30, 2016, Jayde, at the age of fourteen, was diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS. After years of searching with no answers, there came a great comfort with her diagnosis. We finally had a name for the invisible beast we had been fighting. There is no cure, only medications and lifestyle changes to help control her symptoms. POTS is the most common form of Dysautonomia (pronounced dis-auto-know-me-a), affecting between 500,000 and 1 million individuals in the United States, with most patients having multiple forms of Dysautonomia. POTS is generally brought on by a viral infection, head injury, severe stress, or surgery. It is defined as a type of Dysautonomia, a malfunction of the Autonomic Nervous System. The ANS automatically controls our heart rate, blood pressure, gastrointestinal motility, and other automatic functions of the body. Think of it as the unconscious areas of our bodies, which, when they are working correctly, we do not give it much thought. A POTS patient experiences an extreme increase in their heart rate upon sitting and standing. For example, the typical adolescent's heart rate is between 60 and 80 bpm. Jayde's average heart rate is around 125 and spikes to 140 bpm and up to 180 bpm.
The symptoms of POTS are dizziness or pre-syncope (almost fainting), syncope (fainting), palpitations, headaches/migraines, brain fog or difficulty in thinking, debilitating fatigue, a sense of anxiety, shakiness, visual problems (graying, tunnel or glare), GI problems (nausea, diarrhea, pain), sweating, chest pains, insomnia or difficulty sleeping well, worsening of symptoms with bright lights or loud sounds, purplish discoloration of the skin due to blood pooling in hands and feet and bladder problems. The factors that worsen POTS: prolonged heat exposure, after eating - especially refined carbohydrates, sugar, white flour, etc., standing up quickly, dehydration, time of day (especially after waking), menstrual cycle, hot showers, deconditioning, prolonged bed rest (this one is a damned if you do and damned if you don't scenario), alcohol (as it dilates the blood vessels), excessive exercise and illnesses such as a viral infection or after an operation.
Some POTS patients search for answers 10, 12, and even 15 years before their diagnosis. On average, it takes between six and seven years for most POTS patients to receive a diagnosis. Our search took ten years. It is a bold reminder that there is no better advocate for your child than you. I have several friends and family members who have battled chronic illnesses and even cancer on behalf of their children. Until you are in the midst of it yourself, you cannot imagine the depths you will go to protect that fragile life entrusted to your care. Your children are fighters, and you are warriors; you have my utmost respect and love!!! I knew from the day she was born that Jayde was strong and she is a fighter. The invisibility of POTS has made that all the more visible.
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