This is Seth. Seth has epilepsy. He was diagnosed with Tuberous Sclerosis before he was born with a level two sonogram. Tuberous Sclerosis is a disease that forms tubers (calsified masses) surrounding the outside of his brain, heart and kidneys and eyes. The position of the tubers on his brain causes him to have epilepsy.This is a genetic disease he shares with his dad. Seth has several other diagnoses that stem from that main disease He also has autism, ADHD,OCD, anxiety, and more seriously brain tumors in the left and right ventricle of his brain.
He started having seizures called Infantile Spasms at 11months old. They changed to regular seizures when he turned a year old.
Seth has been taking various seizure and behavior medications since he was 11months old. He has had many challenges throughout the years. The autism has made it difficult for him to function with his peers. Mentally he is 6yrs old even though he just turned 14 this September.
Throughout the years, his health has had a lot of ups and down. He has been taking a drug used to treat cancer since 2012 to try and shrink his brain tumors. It worked the first year, then they grew and there has been no change in their size for the last 2years. Seth has a difficult life, he is not feeling well everyday, he has to nap everyday. He has to endure tests such as MRI's every six months where he is put to sleep under anesthesia. He has EEG's to monitor his brain waves for seizure activity, and he has labwork and several doctors appointments that he attends monthly. Every appointment or test he has we have to prep him weeks in advance. Sometimes I sit outside the hosp for 30-40 minutes trying to convince him to go in.
Seth cannot attend school due to these medical changes. He has a teacher from the public school that comes several days a week to teach him. He has a behavior therapist that sees him several times a week to help him learn to control his feelings and be a functioning member of society.
I am his main caretaker, I'm a stay at home mom. I cannot work due to his daily needs. I get to see first hand all the struggles he faces. I have to restrain him almost daily for safety of others and himself because he cannot control himself. Things like going to the grocery store are simple tasks for most people but for Seth it's not easy. His compulsion to get things makes it hard to go anywhere. He has seizures when he gets overstimulated or if he is too hot, even a common cold or infection can set him off. So going to amusement parks or shows is out of the question most of the time, or if we do which we have, it's a Difficult day for him and everyone with him. His younger brother has taken the role of big brother due to Seth's mental Compasity.
As a parent watching your child suffer daily with things like getting dressed or having conversations with his peers It's difficult. I'm tired of giving him all these medications that have so many side effects that are harsh on his body. The cancer medicaction gives him large mouth sores, he has insomnia, anxiety, and many of the medications can cause psychotic episodes.
We have been trying to get him on Other forms of treatment for several years. I would rather him being on a natural remedy that has proven to help people in his situation Verses all these harsh drugs that Cause such terrible side effects. His doctor finally agreed after I told him that I don't feel like I'm doing my job as a parent if I don't try every available option out there to try and help him.
I know that many people are against natural approaches to be used for treatments, but after reasearch I have found in many cases where studies have shown that this natural route has had incredible benefits and success in treatments . And when you're a parent of a sick child, you will do everything and anything you can to help that child to not suffer.
Whatever you give will be grately appreciated, we will use this money towards his medical and physical wellbeing.
We will never be able to show our gratitude enough,
The Doss Family
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