PANDAS Medical Treatment for Luke
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My Kid is Not Crazy (03:43 documentary trailer) *MUST SEE*
PANS/PANDAS Factsheet
We are most humbled to reach out to our friends, family and strangers for help, but the gravity of our situation warrants that we do. Our son, Luke has an autoimmune disorder called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections). As a result, he has suffered from Obsessive Compulsive Disorder (OCD) and tics for over 4 years. This began right around his eighth birthday, when he began washing his hands until they bled, and obsessively bathing. This behavior was triggered by food odors. He especially could not tolerate the odor or presence of anything he considered junk food, and would have a panic attack if exposed to it.
Imagine a happy, vibrant child celebrating his birthday with friends after an amazing summer of beach trips, movies, and seemingly endless play dates, and the very next day, standing in front of the sink, washing his hands until they bled. I naively thought this would pass, until one day, he was crying while washing his hands, and saying “Make this stop! I want to die!”. He was treated for OCD and ADHD, but the treatments caused aggressive behavior, even more anxiety, and other unspeakable physical and mental side effects. His OCD symptoms are currently so debilitating, that he has been unable to attend school since February 2016. We recently had a failed trial of Luke attending school for 1-2 hours per day. Please trust that this disorder is horrific. We have been living a nightmare, and are helpless and desperate.
Luke is in mental anguish every day, and his intrusive thoughts and compulsions prevent him from functioning. Despite seeing more than 15 doctors and therapists, multiple ER visits and hospitalizations, his disorder went undiagnosed until April 2016, when a rheumatologist, treated him for PANDAS with an antibiotic. At this time, he had 6 neurological tics, and his OCD so debilitating, he rarely left the house. After 10 days on the antibiotic, he began improving each day. By the end of his 30-day antibiotic treatment, all his tics had disappeared, and his OCD symptoms were about 80% improved. Even his ADHD symptoms disappeared during that time. Unfortunately, his symptoms returned when the antibiotic treatment ended. He again experienced a short remission of symptoms recently, when treated with an antibiotic for an ear infection, which he developed from obsessive showering.
In August 2016, we were forced to bring Luke to the ER, when he began refusing water and other beverages, due to intrusive thoughts. He was again treated for OCD, as the hospital did not recognize PANDAS, and would not test him for strep. We have since found a specialist for PANDAS that ran blood work, which showed a strep infection, as well as an immune deficiency. They are recommending a treatment called IVIG (Intravenous Immunoglobulin). This treatment is used to “reset” the immune system, so antibodies don’t attack the brain, when exposed to an infection or virus. We have been told, there is an 80% chance of full recovery, if he has his first treatment before the onset of puberty. The clock is ticking on this, as he is already 12. The treatment is very expensive, and unfortunately, not covered for this disorder by Luke’s (or most other) medical insurance. Most children need at least 2 treatments.
As you can imagine, this disorder has caused a financial hardship for our family, due to treatment and therapy not covered by insurance, and an inability for us both to work (Luke is not in school and requires 24/7 care). We have exhausted treatment within Luke’s medical coverage, as well as exhausting our savings. We are hoping to raise enough for 2 IVIG treatments and the costs associated with the treatments. We are also hoping to schedule the first treatment before the end of 2016.
We are truly grateful for your compassion and support.
Sincerely,
Matt & Mary
Note: Learn more about PANDAS/PANS by clicking on the links at the top of the page. It is a misdiagnosed disorder that affects 1 in 200 children.
PANS/PANDAS Factsheet
We are most humbled to reach out to our friends, family and strangers for help, but the gravity of our situation warrants that we do. Our son, Luke has an autoimmune disorder called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections). As a result, he has suffered from Obsessive Compulsive Disorder (OCD) and tics for over 4 years. This began right around his eighth birthday, when he began washing his hands until they bled, and obsessively bathing. This behavior was triggered by food odors. He especially could not tolerate the odor or presence of anything he considered junk food, and would have a panic attack if exposed to it.
Imagine a happy, vibrant child celebrating his birthday with friends after an amazing summer of beach trips, movies, and seemingly endless play dates, and the very next day, standing in front of the sink, washing his hands until they bled. I naively thought this would pass, until one day, he was crying while washing his hands, and saying “Make this stop! I want to die!”. He was treated for OCD and ADHD, but the treatments caused aggressive behavior, even more anxiety, and other unspeakable physical and mental side effects. His OCD symptoms are currently so debilitating, that he has been unable to attend school since February 2016. We recently had a failed trial of Luke attending school for 1-2 hours per day. Please trust that this disorder is horrific. We have been living a nightmare, and are helpless and desperate.
Luke is in mental anguish every day, and his intrusive thoughts and compulsions prevent him from functioning. Despite seeing more than 15 doctors and therapists, multiple ER visits and hospitalizations, his disorder went undiagnosed until April 2016, when a rheumatologist, treated him for PANDAS with an antibiotic. At this time, he had 6 neurological tics, and his OCD so debilitating, he rarely left the house. After 10 days on the antibiotic, he began improving each day. By the end of his 30-day antibiotic treatment, all his tics had disappeared, and his OCD symptoms were about 80% improved. Even his ADHD symptoms disappeared during that time. Unfortunately, his symptoms returned when the antibiotic treatment ended. He again experienced a short remission of symptoms recently, when treated with an antibiotic for an ear infection, which he developed from obsessive showering.
In August 2016, we were forced to bring Luke to the ER, when he began refusing water and other beverages, due to intrusive thoughts. He was again treated for OCD, as the hospital did not recognize PANDAS, and would not test him for strep. We have since found a specialist for PANDAS that ran blood work, which showed a strep infection, as well as an immune deficiency. They are recommending a treatment called IVIG (Intravenous Immunoglobulin). This treatment is used to “reset” the immune system, so antibodies don’t attack the brain, when exposed to an infection or virus. We have been told, there is an 80% chance of full recovery, if he has his first treatment before the onset of puberty. The clock is ticking on this, as he is already 12. The treatment is very expensive, and unfortunately, not covered for this disorder by Luke’s (or most other) medical insurance. Most children need at least 2 treatments.
As you can imagine, this disorder has caused a financial hardship for our family, due to treatment and therapy not covered by insurance, and an inability for us both to work (Luke is not in school and requires 24/7 care). We have exhausted treatment within Luke’s medical coverage, as well as exhausting our savings. We are hoping to raise enough for 2 IVIG treatments and the costs associated with the treatments. We are also hoping to schedule the first treatment before the end of 2016.
We are truly grateful for your compassion and support.
Sincerely,
Matt & Mary
Note: Learn more about PANDAS/PANS by clicking on the links at the top of the page. It is a misdiagnosed disorder that affects 1 in 200 children.
Organizer and beneficiary
Vasi Koufis
Organizer
Schaumburg, IL
Mary Shuminas
Beneficiary
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