Forest’s Epilepsy Journey

As some of you know, Forest had his first seizure out of the blue in March 2017, right before his 18th birthday and high school graduation. He was diagnosed with Epilepsy shortly after his first seizure and experiences Grand Mal seizures which are very traumatic for him and to watch. Since then he is still continuing to have seizures, multiple tests including MRI’s, EEG’s, and blood work. All of which has come back normal. He has been on Levetiracetom (also known as Keppra) since 2017 and is now up to 3,000mg daily. His Current Neurologist says there is no more testing to be done since previous tests are normal, but has no problems continuing to up his daily dose of Keppra. We don’t want to just mask the issue at hand, we desperately want to get to the root of it. We have requested a second opinion and requesting more testing to be done which we have been denied here in Spokane. We are now waiting for the referral to Swedish Medical Center in Seattle AND the Mayo Clinic in Rochester Minnesota as Forest had his phone consult this morning. They should hear back from Mayo within two weeks with an approval OR denial. IF denied, funds raised will help with travel to and from Seattle to receive a second opinion/possible further testing. IF approved, we will need to come up with $3k-$5k 1 hour prior to his first appointment to begin any further testing, that amount does NOT include any travel expenses like airfare OR hotel stays while there. We will be looking into financial assistance with them also. Since July, when Forest’s “cluster” of seizures occurred he has lost his drivers license AND job due to heavy restrictions which in turn lost his medical insurance. So he will be considered a self pay patient with Mayo, which is why he needs such a high down payment to get started. He has recently been approved for state medical insurance which will help in Seattle, just not at the Mayo Clinic in Minnesota. Forest, myself, and our families want more answers as it will dramatically help not only his mental health but also mine and our 10 month old little girl. He just wants to get back to his “normal” and be able to provide for us. He feels as though he is missing out on a lot due to the constant worry of “when” his next seizure will be. He’s afraid to be alone not only by himself but also with his daughter as he doesn’t want to put her in harms way. The last four months of fear and stress have taken a big toll on our mental health. I am in the process of getting a therapist to get my mental health back on track from the trauma I’ve seen him go through from his seizures. I do not sleep at night because of the constant worry about Forest and the safety for him and our daughter. In July, we had to give up our home and are now staying with family due to Forest losing his job, license, and fear of having a seizure alone with our daughter. We try to make sure someone is around at all times for safety incase something does happen and he needs help. With all the hospital bills from his seizures we are only able to make the minimum payments every month since I am working a part time job and he is unable to find a job that he can get to/from and doesn’t have restrictions from his diagnosis. We feel trying for more answers can help us get back on our feet and hopefully not have to live in fear forever. We can’t thank everyone enough that has checked on us during this time and we are asking for your help to get the answers we need for Forest, and the safety for the three of us.