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Kyle needs our help. In April 2018, Kyle had a seizure while out hiking with some friends. He was taken to a hospital in Orange County where they ran tests that came back negative for any abnormalities. The doctors did find that his MRI showed a small mass in his brain and he was referred to a neurologist in Irvine for further treatment.
The doctor that looked over Kyle's MRI concluded that the mass was fatty tissue that wasn't anything to worry about. The doctor felt that it was not life threatening and that the seizure was a result of a chemical imbalance. Kyle was prescribed medicine to correct a possible serotonin imbalance.
A month later Kyle experienced another seizure that he was conscious for and lasted 30 minutes long. The seizure only affected the left side of his body, and afterward he become temporarily paralyzed for about two weeks. He was treated at Long Beach Memorial and that is when our eyes were opened to the severity of Kyle's condition.
The 'fatty tissue' the first neurologist pointed out was in fact a growing mass that was situated near the motor cortex. The growth causes inflammation throughout the brain, and the inflammation pushes down on the motor cortex which is the root cause of Kyle's seizures.
Kyle's condition has been really hard to understand and diagnose. Ultimately, he was referred to UCLA where doctors have been working hard to give him the best treatment options. Since last April, Kyle has been hospitalized 7 times, with more than half of those hospital stays lasting 2-4 weeks. He has had 4 major seizures that have lasted more than an hour and that have resulted in temporary paralysis.
We thought that his condition had been resolved by the end of May 2019. Kyle had been treated with steroids and an immune blocker, and began physical therapy to strengthen the left side of his body. An MRI in June had shown very little remains of the mass. Kyle was finally getting his life back.
About two weeks into being back at work in August of 2019, he experienced a very small seizure at home. He was treated at a local hospital in Orange County and had a follow-up slated the following week with his doctor at UCLA. The morning of that appointment we noticed a significant dip in functionality of his left side, so Kyle went to UCLA to be admitted into the hospital for monitoring. The following night he had a seizure that lasted close to 3 hours. It was quite possibly the worst night of our lives. Thankfully he had the best doctors and nurses taking care of him.
What We Know About the Condition
We still do not have all of the answers. All we really know is that we have to take this one step at a time and be comfortable with the slow process of treatment.
After countless blood tests, lumbar punctures, and a brain biopsy the doctors believe that this is an immune disorder. There hasn't been any clearly defined results in theses tests, other than not finding any traces of cancers or other infectious diseases.
We have met with nearly 100 doctors since last spring and not one of them has ever seen a case like Kyle's. This has been the hardest year of our lives.
Kyle's path of treatment as of right now is treating it as an autoimmune disorder. What we have learned is that his body responds well to steroids, almost shrinking the mass completely. Now the doctors have to find another immune suppressor to keep the inflammation at bay.
The doctors are moving in the direction of the mass being a form of vasculitis, essentially inflamed blood vessels in the brain. Typically treatment for this kind of condition involves immune suppressors.
How you can help?
Kyle was on medical leave from work for a year and was able to get aid from both work and the state. Unfortunately, he has to take another leave of absence due to his recent hospitalization. Moving forward, the most important part of this process is keeping Kyle stable and seizure free.
Over the past year we have used our savings to pay for hospital bills and doctors appointments. We don't have a timeline on when he will be able to go back to work or school. We decided to create this GofundMe to help pay for Kyle's medical expenses and most importantly get his story out there. Any donation will help us immensely.
We are hoping that his story reaches someone who may be dealing with a similar immune disorder. Please share Kyle's story. We can't thank you enough for any thing you do. We are so fortunate to have the most supportive families, friends, and colleagues.
The doctor that looked over Kyle's MRI concluded that the mass was fatty tissue that wasn't anything to worry about. The doctor felt that it was not life threatening and that the seizure was a result of a chemical imbalance. Kyle was prescribed medicine to correct a possible serotonin imbalance.
A month later Kyle experienced another seizure that he was conscious for and lasted 30 minutes long. The seizure only affected the left side of his body, and afterward he become temporarily paralyzed for about two weeks. He was treated at Long Beach Memorial and that is when our eyes were opened to the severity of Kyle's condition.
The 'fatty tissue' the first neurologist pointed out was in fact a growing mass that was situated near the motor cortex. The growth causes inflammation throughout the brain, and the inflammation pushes down on the motor cortex which is the root cause of Kyle's seizures.
Kyle's condition has been really hard to understand and diagnose. Ultimately, he was referred to UCLA where doctors have been working hard to give him the best treatment options. Since last April, Kyle has been hospitalized 7 times, with more than half of those hospital stays lasting 2-4 weeks. He has had 4 major seizures that have lasted more than an hour and that have resulted in temporary paralysis.
We thought that his condition had been resolved by the end of May 2019. Kyle had been treated with steroids and an immune blocker, and began physical therapy to strengthen the left side of his body. An MRI in June had shown very little remains of the mass. Kyle was finally getting his life back.
About two weeks into being back at work in August of 2019, he experienced a very small seizure at home. He was treated at a local hospital in Orange County and had a follow-up slated the following week with his doctor at UCLA. The morning of that appointment we noticed a significant dip in functionality of his left side, so Kyle went to UCLA to be admitted into the hospital for monitoring. The following night he had a seizure that lasted close to 3 hours. It was quite possibly the worst night of our lives. Thankfully he had the best doctors and nurses taking care of him.
What We Know About the Condition
We still do not have all of the answers. All we really know is that we have to take this one step at a time and be comfortable with the slow process of treatment.
After countless blood tests, lumbar punctures, and a brain biopsy the doctors believe that this is an immune disorder. There hasn't been any clearly defined results in theses tests, other than not finding any traces of cancers or other infectious diseases.
We have met with nearly 100 doctors since last spring and not one of them has ever seen a case like Kyle's. This has been the hardest year of our lives.
Kyle's path of treatment as of right now is treating it as an autoimmune disorder. What we have learned is that his body responds well to steroids, almost shrinking the mass completely. Now the doctors have to find another immune suppressor to keep the inflammation at bay.
The doctors are moving in the direction of the mass being a form of vasculitis, essentially inflamed blood vessels in the brain. Typically treatment for this kind of condition involves immune suppressors.
How you can help?
Kyle was on medical leave from work for a year and was able to get aid from both work and the state. Unfortunately, he has to take another leave of absence due to his recent hospitalization. Moving forward, the most important part of this process is keeping Kyle stable and seizure free.
Over the past year we have used our savings to pay for hospital bills and doctors appointments. We don't have a timeline on when he will be able to go back to work or school. We decided to create this GofundMe to help pay for Kyle's medical expenses and most importantly get his story out there. Any donation will help us immensely.
We are hoping that his story reaches someone who may be dealing with a similar immune disorder. Please share Kyle's story. We can't thank you enough for any thing you do. We are so fortunate to have the most supportive families, friends, and colleagues.