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My brother, Kevin, has Lennox-Gastaut Syndrome, and has beaten his prognosis and baffled doctors his entire 37 years of life. He is a joy to his entire family and a blessing to his grandparents. Our dad, Dave, works for Pepsi, and our mom, Laura, is an RN and is the Director of Nursing for Dignity Health Hospice Program.
On October 17, 2019, Kevin was diagnosed with a large pituitary tumor. He was transferred via ambulance from the central coast of California to Stanford Hospital in the Bay area. He underwent neurosurgery on October 18th for tumor removal. Two days later, he lost his vision and was rushed back into surgery, where a large blood clot was found pressing on his optic nerves. Surgeons were able to remove it, and he miraculously regained his vision. He was discharged from Stanford October 23rd and was back home looking forward to recovery.
On October 27th, Kevin woke up with blurry vision. Stanford instructed my parents to observe, and take him to the ER if his vision worsened. By that afternoon, he suddenly experienced complete loss of sight once again. He was taken to the ER, where he was quickly airlifted via helicopter back to Stanford Hospital. He underwent yet another surgery on October 28th, and another large clot was removed. He regained his vision shortly after. Once again, he has baffled his doctors. They say this is extremely rare. Most neurosurgeons have never experienced this even once, and twice is certainly unheard of. His anticipated discharge from Stanford is November 2nd or 3rd.
Fortunately, Kevin is under our father's insurance for life due to his special needs as residual effects from the LGS. However, our parents have suffered financially from loss of wages, travel expenses, lodging, etc. There is also anticipation that some of the ambulance and air transport costs may not be covered under the insurance policy. They have also paid for travel expenses for our grandmother, who is a retired nurse, from Texas to California so that she can assist with Kevin's recovery in order for our parents to return to work with peace of mind knowing Kevin is safe and cared for at home.
I have included links for more information about Kevin's syndrome, as well as his diagnosis and surgical procedures.
https://rarediseases.org/rare-diseases/lennox-gastaut-syndrome/
https://ghr.nlm.nih.gov/condition/lennox-gastaut-syndrome
https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/symptoms-causes/syc-20350548
https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/diagnosis-treatment/drc-20350553
Currently, he is experiencing Syndrome of Inappropriate Antidiuretic Hormone (SIADH), which is a complication from his surgeries involving his sodium levels and difficulty controlling his electrolytes. It happens in about 10% of patients following pituitary surgery.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4470178/
Please consider donating to Kevin's GoFund Me account. In lieu of monetary donations, prayers will be very much appreciated.
On October 17, 2019, Kevin was diagnosed with a large pituitary tumor. He was transferred via ambulance from the central coast of California to Stanford Hospital in the Bay area. He underwent neurosurgery on October 18th for tumor removal. Two days later, he lost his vision and was rushed back into surgery, where a large blood clot was found pressing on his optic nerves. Surgeons were able to remove it, and he miraculously regained his vision. He was discharged from Stanford October 23rd and was back home looking forward to recovery.
On October 27th, Kevin woke up with blurry vision. Stanford instructed my parents to observe, and take him to the ER if his vision worsened. By that afternoon, he suddenly experienced complete loss of sight once again. He was taken to the ER, where he was quickly airlifted via helicopter back to Stanford Hospital. He underwent yet another surgery on October 28th, and another large clot was removed. He regained his vision shortly after. Once again, he has baffled his doctors. They say this is extremely rare. Most neurosurgeons have never experienced this even once, and twice is certainly unheard of. His anticipated discharge from Stanford is November 2nd or 3rd.
Fortunately, Kevin is under our father's insurance for life due to his special needs as residual effects from the LGS. However, our parents have suffered financially from loss of wages, travel expenses, lodging, etc. There is also anticipation that some of the ambulance and air transport costs may not be covered under the insurance policy. They have also paid for travel expenses for our grandmother, who is a retired nurse, from Texas to California so that she can assist with Kevin's recovery in order for our parents to return to work with peace of mind knowing Kevin is safe and cared for at home.
I have included links for more information about Kevin's syndrome, as well as his diagnosis and surgical procedures.
https://rarediseases.org/rare-diseases/lennox-gastaut-syndrome/
https://ghr.nlm.nih.gov/condition/lennox-gastaut-syndrome
https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/symptoms-causes/syc-20350548
https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/diagnosis-treatment/drc-20350553
Currently, he is experiencing Syndrome of Inappropriate Antidiuretic Hormone (SIADH), which is a complication from his surgeries involving his sodium levels and difficulty controlling his electrolytes. It happens in about 10% of patients following pituitary surgery.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4470178/
Please consider donating to Kevin's GoFund Me account. In lieu of monetary donations, prayers will be very much appreciated.
Organizer
Laura May- Deppen
Organizer
Nipomo, CA