Jarred's Road to Recovery
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On January 28th, 2019, our son, Jarred turned 16 years old. While most kids his age celebrate with friends and family, eat cake and ice cream, and get excited about the prospect of learning to drive, Jarred was worried about whether or not he could get out of bed without dropping to the floor. He didn’t know if he could walk the few steps to the washroom, or if he would make it back, or how high his heartrate would climb. The extreme nausea and upset stomach prevented him from eating much of anything. The headache and weakness prevented him from having friends over, even for a short time. That was the first day I witnessed the cold hand/hot hand symptom he’d been trying to describe. One hand becomes hot, red, and swollen almost to the elbow, while at the same time the other one becomes cold, numb and bluish to the elbow. One doctor gave us a very strange look at this description and said, “Take a picture next time.” Jarred described this as his “worst birthday ever.”
Let me go back. It all started on July 17th, 2018. At least, that was the critical point, as in hindsight, we do now recognize that there were signs of his condition prior to this. Jarred woke up early in the morning, around 5:00 a.m. not feeling well. He rested and tried to go back to sleep but could not. When he tried to get up out of bed, his heart felt like it stopped for a few seconds, then started beating hard and really, really fast. He thought he was having a heart attack, so he called 911. His limbs and his lips started to seize so he moaned and kicked his bed post to wake us up. By the time I flew out of bed and down the hall, my husband already had Jarred propped up against him, but was unable to keep his hand on Jarred’s chest as his heart was beating so hard and so fast. The paramedics didn’t want to take him to the hospital because they said it was just a panic attack and that he was fine. We insisted, so they took him to the smaller hospital to the north of us where they monitored him, did bloodwork, and sent him home after a few hours.
Jarred’s heart started doing really weird things not long after we came home. It would skip beats, double beat, and then race really high. He didn’t feel well. Jarred kept saying that he “didn’t feel right cognitively.” So, it was down to Sick Kids this time. They did the same as the previous hospital but also gave us a referral for a pediatric cardiologist for October 31st. This was July 18th, and the earliest he could be seen was Halloween!
On a side note, our cardiologist told us that there are only 8 pediatric cardiologists in the province of Ontario: two for the GTA, himself and another doctor who is set to retire. The wait list is long now. What will happen when the other doctor retires? Or, what happens if Dr. Singla gets sick, or is in an accident? Who will care for the pediatric cardiac patients in the GTA then? It’s scary! And, the referral for the endocrinologist was potentially to be as long as a year wait. So, I started calling around. Kidcrew is a wonderful place on Bathurst St. in Toronto that our cardiologist told us about. This is where we met the endocrinologist, Dr. Verbeeten, who spent a lot of time asking questions, listening, and examining our son. She was the one who first proposed his diagnosis of POTS. She even followed up with a summary email and information for us. We also had a positive experience with Dr. Soreni, a psychiatrist there, back in October. He gave us very practical suggestions and recommended follow-up with a psychologist.
So, over the past few months, we have had multiple 911 calls and trips to the ER. We have encountered some very “unpleasant” ER doctors, though most of the paramedics and the nurses have been great. I should say though that on two different ER trips, we had doctors who actually listened and tried to help us. The night that we had Dr. Hays was probably the busiest. We spent the night in the hallway. I stood from about 7:30 p.m. until the wee small hours as there was nowhere for me to sit. I kept having to move Jarred’s wheelchair out of the way. Dr. Hays listened, asked questions, actually took the time to examine our son, and was the first to suggest Lyme, and ran the blood test. On another occasion, when we refused to leave the hospital, Dr. Aziz came in. He was equally sympathetic and thorough and really tried to help us.
As well as our family doctor and pediatrician, we have seen a pediatric cardiologist, neurologist, endocrinologist, two psychiatrists (one of whom was absolutely awful!), a psychologist, and two naturopathic doctors. I can’t tell you how many times we were told that it was “just anxiety” or all “psychosomatic.” That’s not Jarred’s personality. He’s a pretty self-aware guy who is usually out-going and confident, and very social. He’s not an anxious type of person.
Finally, early in February, after the specialists consulted each other, and they cleared him of other issues (heart, neurological, endocrinological, etc.), we received a diagnosis of Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS) with mild Elhers Danlos Syndrome. What a mouthful! What a relief to have a diagnosis…except that there really isn’t anything they can do for him.
The few POTS specialists in Canada won’t even look at him until he is 18. My husband called the clinic in Hamilton. That’s two more years! Our cardiologist said it didn’t really make a difference as they would give him the same advice: increase water and sodium intake, and record everything to see if there are triggers. The sodium makes Jarred nauseous, and the more water he drinks, the more he has to go to the washroom, which he doesn’t always have the strength or the energy to do. Many POTS patients are functional, unlike Jarred. Many can also take beta blockers to control their tachycardia. Jarred can’t because his type of POTS also causes his heart rate to drop too low.
For anyone else out there suffering through a similar situation, here is a list of some of the symptoms Jarred has been experiencing over the past seven and half months:
• Tachycardia (rapid heart rate) sometimes brachycardia (low heart rate)
• Headaches (not a headache sufferer prior to this)
• Nausea (extreme, random)
• Extreme fatigue (to the point of collapsing/unable to stand for shower)
• Tingling and numbness in face and limbs
• Joint pain
• Blurred vision
• Weight loss (over 20 lbs and he was thin to begin with!)
• Muscle twitching all over, especially chest
• Rapid body temperature changes
• Inability to regulate body temperature (ears and face can be hot while feet numb from cold)
• Hot hand/cold hand at the same time
• Inability to concentrate, fuzzy thinking
• Gluten causes spike in heart rate
• Major insomnia (used to sleep for 20 hours when going through a growth spurt, now 6 hours is a good night)
I’m sure there are more symptoms that I’ve missed. The point is, that this condition has been very debilitating for Jarred. He has spent most of the past 7 months in bed, unable to go to school, visit or hang out with friends, or go to the dentist and other such appointments. This illness has taken a real toll on our entire family as well.
Jarred just wants his life back. He wants to be able to go to school and see his friends. One thing I miss more than anything is his singing. He has a beautiful, rich singing voice, and from the time he was 11 months old, his vocal chords never stopped. If he wasn’t talking, he was singing. Now, he can’t do either for long. He gets out of breath, his chest gets tight, and he has an episode. Jarred wants to sing and play his guitar again! Also, he was determined to be well for the Robotics launch on January 5th. He is a programmer for the Alpha Dogs. All fall that was his focus. And now, he’s missing out. He missed build season and it looks like he will miss the competitions. This was essentially the only reason he went to school last year. Jarred wants nothing more than to be back there supporting his team! Plus, he’s missing his entire year of school.
I refused to believe that nothing can be done! So, once I recovered from my own illness, I started researching non-stop. I have found a clinic in the US that will treat Jarred. They have experience with “hopeless” POTS patients like Jarred and have had good success. I had a phone consultation with Dr. George Michalopoulos at the Neurologic Wellness Institute outside of Chicago. He told me there were no guarantees, but that he thought he could help. POTS is a dysfunction of the autonomic nervous system. They work to use the neuroplasticity of the brain and reprogram it so that it works properly. We are not looking for complete recovery. We are hopeful that Jarred will be well enough to return to school for at least one class, and to be able to complete the two online courses he has been struggling to do. It will take him time to rebuild muscle, gain weight, and overcome these many months of suffering. I found medical professionals in Ontario with similar credentials and spent the last couple of days on the phone with some of them. Dr. Michalopoulos is highly regarded by his peers and the Ontario doctors said that he was the man with the experience, the equipment, and the team behind him to help our son, as Jarred’s case sounds very complex. They said that this was where Jarred needed to go.
So, please help to share our story. We are also doing a GoFundMe to raise money to cover some of Jarred’s treatment costs in the US. The timeline is tight. We are scheduled to leave after work on March 5th so that most of his treatment can happen over March Break. The only glitch will be if I don’t get approval from my employer to take 3 unpaid days of leave to begin Jarred’s treatment. In that case, he will have to suffer another 3 and half months until July, which will be difficult for all of us. Psychologically, I don’t know if he can wait that long. One way or another though, Jarred will be going to Dr. Michalopoulos for treatment! He needs to get his life back!
Let me go back. It all started on July 17th, 2018. At least, that was the critical point, as in hindsight, we do now recognize that there were signs of his condition prior to this. Jarred woke up early in the morning, around 5:00 a.m. not feeling well. He rested and tried to go back to sleep but could not. When he tried to get up out of bed, his heart felt like it stopped for a few seconds, then started beating hard and really, really fast. He thought he was having a heart attack, so he called 911. His limbs and his lips started to seize so he moaned and kicked his bed post to wake us up. By the time I flew out of bed and down the hall, my husband already had Jarred propped up against him, but was unable to keep his hand on Jarred’s chest as his heart was beating so hard and so fast. The paramedics didn’t want to take him to the hospital because they said it was just a panic attack and that he was fine. We insisted, so they took him to the smaller hospital to the north of us where they monitored him, did bloodwork, and sent him home after a few hours.
Jarred’s heart started doing really weird things not long after we came home. It would skip beats, double beat, and then race really high. He didn’t feel well. Jarred kept saying that he “didn’t feel right cognitively.” So, it was down to Sick Kids this time. They did the same as the previous hospital but also gave us a referral for a pediatric cardiologist for October 31st. This was July 18th, and the earliest he could be seen was Halloween!
On a side note, our cardiologist told us that there are only 8 pediatric cardiologists in the province of Ontario: two for the GTA, himself and another doctor who is set to retire. The wait list is long now. What will happen when the other doctor retires? Or, what happens if Dr. Singla gets sick, or is in an accident? Who will care for the pediatric cardiac patients in the GTA then? It’s scary! And, the referral for the endocrinologist was potentially to be as long as a year wait. So, I started calling around. Kidcrew is a wonderful place on Bathurst St. in Toronto that our cardiologist told us about. This is where we met the endocrinologist, Dr. Verbeeten, who spent a lot of time asking questions, listening, and examining our son. She was the one who first proposed his diagnosis of POTS. She even followed up with a summary email and information for us. We also had a positive experience with Dr. Soreni, a psychiatrist there, back in October. He gave us very practical suggestions and recommended follow-up with a psychologist.
So, over the past few months, we have had multiple 911 calls and trips to the ER. We have encountered some very “unpleasant” ER doctors, though most of the paramedics and the nurses have been great. I should say though that on two different ER trips, we had doctors who actually listened and tried to help us. The night that we had Dr. Hays was probably the busiest. We spent the night in the hallway. I stood from about 7:30 p.m. until the wee small hours as there was nowhere for me to sit. I kept having to move Jarred’s wheelchair out of the way. Dr. Hays listened, asked questions, actually took the time to examine our son, and was the first to suggest Lyme, and ran the blood test. On another occasion, when we refused to leave the hospital, Dr. Aziz came in. He was equally sympathetic and thorough and really tried to help us.
As well as our family doctor and pediatrician, we have seen a pediatric cardiologist, neurologist, endocrinologist, two psychiatrists (one of whom was absolutely awful!), a psychologist, and two naturopathic doctors. I can’t tell you how many times we were told that it was “just anxiety” or all “psychosomatic.” That’s not Jarred’s personality. He’s a pretty self-aware guy who is usually out-going and confident, and very social. He’s not an anxious type of person.
Finally, early in February, after the specialists consulted each other, and they cleared him of other issues (heart, neurological, endocrinological, etc.), we received a diagnosis of Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS) with mild Elhers Danlos Syndrome. What a mouthful! What a relief to have a diagnosis…except that there really isn’t anything they can do for him.
The few POTS specialists in Canada won’t even look at him until he is 18. My husband called the clinic in Hamilton. That’s two more years! Our cardiologist said it didn’t really make a difference as they would give him the same advice: increase water and sodium intake, and record everything to see if there are triggers. The sodium makes Jarred nauseous, and the more water he drinks, the more he has to go to the washroom, which he doesn’t always have the strength or the energy to do. Many POTS patients are functional, unlike Jarred. Many can also take beta blockers to control their tachycardia. Jarred can’t because his type of POTS also causes his heart rate to drop too low.
For anyone else out there suffering through a similar situation, here is a list of some of the symptoms Jarred has been experiencing over the past seven and half months:
• Tachycardia (rapid heart rate) sometimes brachycardia (low heart rate)
• Headaches (not a headache sufferer prior to this)
• Nausea (extreme, random)
• Extreme fatigue (to the point of collapsing/unable to stand for shower)
• Tingling and numbness in face and limbs
• Joint pain
• Blurred vision
• Weight loss (over 20 lbs and he was thin to begin with!)
• Muscle twitching all over, especially chest
• Rapid body temperature changes
• Inability to regulate body temperature (ears and face can be hot while feet numb from cold)
• Hot hand/cold hand at the same time
• Inability to concentrate, fuzzy thinking
• Gluten causes spike in heart rate
• Major insomnia (used to sleep for 20 hours when going through a growth spurt, now 6 hours is a good night)
I’m sure there are more symptoms that I’ve missed. The point is, that this condition has been very debilitating for Jarred. He has spent most of the past 7 months in bed, unable to go to school, visit or hang out with friends, or go to the dentist and other such appointments. This illness has taken a real toll on our entire family as well.
Jarred just wants his life back. He wants to be able to go to school and see his friends. One thing I miss more than anything is his singing. He has a beautiful, rich singing voice, and from the time he was 11 months old, his vocal chords never stopped. If he wasn’t talking, he was singing. Now, he can’t do either for long. He gets out of breath, his chest gets tight, and he has an episode. Jarred wants to sing and play his guitar again! Also, he was determined to be well for the Robotics launch on January 5th. He is a programmer for the Alpha Dogs. All fall that was his focus. And now, he’s missing out. He missed build season and it looks like he will miss the competitions. This was essentially the only reason he went to school last year. Jarred wants nothing more than to be back there supporting his team! Plus, he’s missing his entire year of school.
I refused to believe that nothing can be done! So, once I recovered from my own illness, I started researching non-stop. I have found a clinic in the US that will treat Jarred. They have experience with “hopeless” POTS patients like Jarred and have had good success. I had a phone consultation with Dr. George Michalopoulos at the Neurologic Wellness Institute outside of Chicago. He told me there were no guarantees, but that he thought he could help. POTS is a dysfunction of the autonomic nervous system. They work to use the neuroplasticity of the brain and reprogram it so that it works properly. We are not looking for complete recovery. We are hopeful that Jarred will be well enough to return to school for at least one class, and to be able to complete the two online courses he has been struggling to do. It will take him time to rebuild muscle, gain weight, and overcome these many months of suffering. I found medical professionals in Ontario with similar credentials and spent the last couple of days on the phone with some of them. Dr. Michalopoulos is highly regarded by his peers and the Ontario doctors said that he was the man with the experience, the equipment, and the team behind him to help our son, as Jarred’s case sounds very complex. They said that this was where Jarred needed to go.
So, please help to share our story. We are also doing a GoFundMe to raise money to cover some of Jarred’s treatment costs in the US. The timeline is tight. We are scheduled to leave after work on March 5th so that most of his treatment can happen over March Break. The only glitch will be if I don’t get approval from my employer to take 3 unpaid days of leave to begin Jarred’s treatment. In that case, he will have to suffer another 3 and half months until July, which will be difficult for all of us. Psychologically, I don’t know if he can wait that long. One way or another though, Jarred will be going to Dr. Michalopoulos for treatment! He needs to get his life back!
Organizer
Kimberly Fosbury
Organizer
Bolton, ON
