Madison's Epilepsy Journey
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Madison Moner’s Epilepsy /Rasmussen’s Encephalitis Story told by her mother Karen Harris Moner
Madison Moner is a beautiful 11 year old child with big dreams. She loves to dance, swim, and Tae Kwon do. She’s always smiling without a care in the world, but in October 2016 our lives changed. I noticed something was wrong on our way home from an eye appointment. She woke up from a nap looking confused and drooling. I thought she was having a bad dream. After witnessing more episodes over two weeks, I made her an appointment with her neurologist(1st opinion), who diagnosed her with Epilepsy. She was placed on her first round of anti-seizure medication.
Although I’ve heard of it, I never really knew what epilepsy was. Madison was scheduled for her first E.E.G. which is monitoring electrical activity of the brain. In my mind, I’m thinking it’s a virus and it can be cured. After educating myself of this disease, I wanted more test done. Madison began to have 5-7 mild seizures daily. In November of 2016, she had her 1st Grand-Mal seizure, where she lost consciousness and uncontrollable muscle spasms, and abnormal brain activity. She was taken to the hospital and prescribed more anti-seizure medication to try to and get them under control.
Over the next few months, more test were done and different medications were added. Madison was diagnosed with refractable front right temporal lobe epilepsy. The seizures increased to 15-20 daily.
On April 18, 2017, Madison was up to 35 seizures a day. I was afraid and knew something was definitely wrong. I wanted a second opinion, and had to seek medical help immediately. On our way to C.S. Mott Children’s hospital in Ann Arbor Mi., Madison had a prolonged Grand Mal in the car. I called 911 and they met us at the next exit.
Madison was hospitalized for 3 weeks. MRI, CAT scans, spinal tap, and blood work was done. More medication was prescribed to see which one worked better to help control the seizures. She was also placed on a Keto-genic diet. This diet is a low carb, moderate protein diet which is primarily to treat difficult to control epilepsy in children. All of her food had to be weighed on a scale. All sweets, such as candy, chips, cookies were cut out of her diet. The diet worked for about 5-6 months and she was having a minimal of 3-4 mild seizures daily, but they began creeping back up to 7-10 daily. I knew Madison was in the best care at Mott hospital, but I felt more could be done. We’ve also tried a few different Cannabis oils along with exercise.
Madison was enrolled in American International Academy in Westland Mi. After 1 month of being enrolled in 2016, the school let me get homework packets weekly, but the help to get these packets became less and less and I decided to enroll Madison in the K-12 online school. I didn’t want her to fall behind. Madison had a hard time adjusting in the beginning, but eventually caught on.
In March, I noticed Madison’s reading slowed to about a 3rd grade level, as well as her academic skills, and memory. I also noticed a tremor/twitch of her left arm. Over the next few days, I paid close attention to see if it continued. When it did, it was constant. I called her neurologist to make an appointment. After the appointment, her neurologist wanted her to be tested for a syndrome called Rasmussen’s Encephalitis, which is a rare syndrome of Epilepsy.
Madison was scheduled for the test, which is a craniotomy (brain biopsy) on July 2 this year. She spent the first few days in ICU and the next few in a regular room. We were treated as if we were the only family on that floor. Madison’s surgeon and neurologist were so pleased with how well she was doing that she was discharged 5 days after surgery. With this type of surgery, a person remains in the hospital for about 3 weeks. One week after Madison’s surgery, we received the results. It was confirmed that Madison has Rasmussen’s Encephalitis.
Rasmussen’s Encephalitis (syndrome) is a rare inflammatory neurological disease, characterized by frequent and severe seizures, loss of motor skill and speech, hemiparesis (weakness on one side of the body), inflammation of the brain, and dementia. I was devastated because I had prayed she didn’t have it.
In the meantime, Madison’s seizures began to increase, along with more intense left arm twitching. On July 14, Madison began having Grand Mal seizures every hour for four hours straight. I rushed her to the hospital and she was admitted and given Ativan. A team of neurologist decided to give a blast of steroids to decrease inflammation, along with a IVIG, which is a mixture of antibodies to treat this immune disorder. While this treatment is very expensive, the results are not seen until after 1-2 weeks after.
Although it hurts my heart to see her go through this, she continues to stay positive. I didn’t want to sit back and not at least try to help, so I bought a few anti-inflammatory herbs, and foods which I’ve been giving her daily to see if it’ll help.
After hearing from her neurologist that this syndrome is hard to treat without surgery, I want a second opinion. If Madison has surgery, it’ll be a hemispherectomy, which is a procedure in which a cerebral hemisphere of the brain be removed, disconnected, or disabled. If surgery is done, my child could loose permanent feeling in her left fingers. She’ll loose temporary feeling in her left arm and leg as if she was a stroke patient and the left side of her face would droop. She’ll have to go through 1 ‘year of extensive therapy. If I opt out of the surgery, the outcome would not be good.
I’ve decided to take Madison to John Hopkins Hospital in Baltimore Maryland, where they specialize in this syndrome. I have faith and believe there is power in prayer. Please continue to pray for my little honey. I cannot sit back and not do NOTHING!
Madison Moner is a beautiful 11 year old child with big dreams. She loves to dance, swim, and Tae Kwon do. She’s always smiling without a care in the world, but in October 2016 our lives changed. I noticed something was wrong on our way home from an eye appointment. She woke up from a nap looking confused and drooling. I thought she was having a bad dream. After witnessing more episodes over two weeks, I made her an appointment with her neurologist(1st opinion), who diagnosed her with Epilepsy. She was placed on her first round of anti-seizure medication.
Although I’ve heard of it, I never really knew what epilepsy was. Madison was scheduled for her first E.E.G. which is monitoring electrical activity of the brain. In my mind, I’m thinking it’s a virus and it can be cured. After educating myself of this disease, I wanted more test done. Madison began to have 5-7 mild seizures daily. In November of 2016, she had her 1st Grand-Mal seizure, where she lost consciousness and uncontrollable muscle spasms, and abnormal brain activity. She was taken to the hospital and prescribed more anti-seizure medication to try to and get them under control.
Over the next few months, more test were done and different medications were added. Madison was diagnosed with refractable front right temporal lobe epilepsy. The seizures increased to 15-20 daily.
On April 18, 2017, Madison was up to 35 seizures a day. I was afraid and knew something was definitely wrong. I wanted a second opinion, and had to seek medical help immediately. On our way to C.S. Mott Children’s hospital in Ann Arbor Mi., Madison had a prolonged Grand Mal in the car. I called 911 and they met us at the next exit.
Madison was hospitalized for 3 weeks. MRI, CAT scans, spinal tap, and blood work was done. More medication was prescribed to see which one worked better to help control the seizures. She was also placed on a Keto-genic diet. This diet is a low carb, moderate protein diet which is primarily to treat difficult to control epilepsy in children. All of her food had to be weighed on a scale. All sweets, such as candy, chips, cookies were cut out of her diet. The diet worked for about 5-6 months and she was having a minimal of 3-4 mild seizures daily, but they began creeping back up to 7-10 daily. I knew Madison was in the best care at Mott hospital, but I felt more could be done. We’ve also tried a few different Cannabis oils along with exercise.
Madison was enrolled in American International Academy in Westland Mi. After 1 month of being enrolled in 2016, the school let me get homework packets weekly, but the help to get these packets became less and less and I decided to enroll Madison in the K-12 online school. I didn’t want her to fall behind. Madison had a hard time adjusting in the beginning, but eventually caught on.
In March, I noticed Madison’s reading slowed to about a 3rd grade level, as well as her academic skills, and memory. I also noticed a tremor/twitch of her left arm. Over the next few days, I paid close attention to see if it continued. When it did, it was constant. I called her neurologist to make an appointment. After the appointment, her neurologist wanted her to be tested for a syndrome called Rasmussen’s Encephalitis, which is a rare syndrome of Epilepsy.
Madison was scheduled for the test, which is a craniotomy (brain biopsy) on July 2 this year. She spent the first few days in ICU and the next few in a regular room. We were treated as if we were the only family on that floor. Madison’s surgeon and neurologist were so pleased with how well she was doing that she was discharged 5 days after surgery. With this type of surgery, a person remains in the hospital for about 3 weeks. One week after Madison’s surgery, we received the results. It was confirmed that Madison has Rasmussen’s Encephalitis.
Rasmussen’s Encephalitis (syndrome) is a rare inflammatory neurological disease, characterized by frequent and severe seizures, loss of motor skill and speech, hemiparesis (weakness on one side of the body), inflammation of the brain, and dementia. I was devastated because I had prayed she didn’t have it.
In the meantime, Madison’s seizures began to increase, along with more intense left arm twitching. On July 14, Madison began having Grand Mal seizures every hour for four hours straight. I rushed her to the hospital and she was admitted and given Ativan. A team of neurologist decided to give a blast of steroids to decrease inflammation, along with a IVIG, which is a mixture of antibodies to treat this immune disorder. While this treatment is very expensive, the results are not seen until after 1-2 weeks after.
Although it hurts my heart to see her go through this, she continues to stay positive. I didn’t want to sit back and not at least try to help, so I bought a few anti-inflammatory herbs, and foods which I’ve been giving her daily to see if it’ll help.
After hearing from her neurologist that this syndrome is hard to treat without surgery, I want a second opinion. If Madison has surgery, it’ll be a hemispherectomy, which is a procedure in which a cerebral hemisphere of the brain be removed, disconnected, or disabled. If surgery is done, my child could loose permanent feeling in her left fingers. She’ll loose temporary feeling in her left arm and leg as if she was a stroke patient and the left side of her face would droop. She’ll have to go through 1 ‘year of extensive therapy. If I opt out of the surgery, the outcome would not be good.
I’ve decided to take Madison to John Hopkins Hospital in Baltimore Maryland, where they specialize in this syndrome. I have faith and believe there is power in prayer. Please continue to pray for my little honey. I cannot sit back and not do NOTHING!
Organizer
Joyce Hammon
Organizer
Inkster, MI
