Allie's War on Epilepsy

Update: Allie got her surgery! Last seizure was 1/9/2018... We hope this continues. We still have follow up appointments and still need a little help to recover financially. Allies dad is now the one going in for surgery to to a major injury to his shoulder. Please keep him in your prayers. Allie's first seizure was spring of 2015. Since then she has fought through thousands of seizures ranging from Absence to Grand Mals.   Fall of 2017 I (mom) wrote the following letter to the Epilepsy Team: To whom it may concern; Thank you for taking the time to consider Allie for the epilepsy surgery. I know you all are debating on the risks and benefits of what this surgery means for Allie on the medical side but I wanted to take a few minutes to share with you what the seizures have taken from Allie and what this surgery can mean for her despite the risks. Two years ago on St. Patrick ’s Day I received a call from the school saying something was wrong with Allie and that paramedics were on the way. I was not told what was wrong with her just that I needed to get there. When I arrived I discovered a completely limp child who was barely breathing. They told me she was in status from a seizure. Before reaching the local hospital we had to intubate her as she could not breathe on her own luckily shortly after arriving she was able to have the tube removed. Later we were transferred to Mary Bridge where our Epilepsy battle began.  For 4 months we battled Grand Mal seizures with no luck of controlling them. We then transferred to Seattle Children’s were we began to have success.. or so we thought. Over the past 2 years we have tried countless medication combos, had neuro surgeons look at us and tell us that they have never seen a reaction to the VNS like what Allie has shown, and hand countless doctors say they have no idea how Allie is still functioning with the number of seizures she is having.  Seizures have destroyed her life. She was involved with Girl Scouts and now is unable to participate in those events as it is unsafe for her to do so. The seizures are keeping her from competing in Equestrian sports as well as just pleasure riding as seizing on horseback is unsafe. She can no longer ride her bike due to seizures while attempting.  The stress of the seizures and the medication interactions have caused severe mood swings and aggression. As a mother I can tell you it is hard to live in a house with a child that has tried to strangle you with her own clothing during a manic episode. Having to call paramedics and police to help restrain and transport your 11 year old daughter because she is banging her head on the wall screaming she wants the seizures to stop or she will kill you is not a fun moment.  Allie wants nothing more than to return to her new school where she can work at her own pace to catch up and move forward with her learning. She has aspirations to become a fashion designer and shows great promise as such. Currently her seizures have affected her motor skills to the point that sketching is difficult let alone running her sewing machine….something that a year ago she was easily able to do.  She can no longer read a simple book and tell you what she has read. Even if we read to her she cannot remember it. Friendships are hard for Allie as she is unable to participate in the majority of the events since she is seizing so frequently that it is unsafe to do so.  We understand the risks are great….. there is always major risks with surgery regardless of what it is. We have hit the point that there are not really any medication options for Allie. The VNS causes her pain if turned up and she is seizing multiple times per hour every day. She has fought so hard to win her battle against Epilepsy and is starting to loose strength.  As her mom I think I have proven that we are not giving up. I can tell you every bump in I5 from Olympia to Children’s. I have rearranged my work schedule for every appointment that is needed. I have spent countless hours in the Emergency Room with an out of control manic kid as well as a kid who is in a state of constant seizures. We have safety proofed our lives to the point of almost not having one while still trying to keep some form of a “real life” for Allie.  The risks are high but the risks of losing her is higher if we do not try to do something. My plea was heard and we began testing. She has already undergone one 3 day invasive EEG and on January 5th she will do another. In addition to the invasive EEG she will also have brain mapping to decide if we can remove one or more of the focal points that cause her seizures. This surgery will remove part of her brain. The risks are high but we do not have a back up plan if we are unable to do the surgery. Currently Allie battles 50 or more seizures per day. She is on large amounts of medications that require other medications to combat the negative side effects.  Though she is classified as "disabled" and will eventually get health care help from DDA our income is too high for financial help. I (mom) and a sole-proprietor and have no PTO available and my husaband has used all of his PTO for medical in 2017.  We are asking for help to ofset the loss of income due to the countless trips to and from Seattle Childrens (160 miles round trip) that we make multiple times per week. The fuel expenses and cost of eatting at Childrens and on the road.  Thank you for taking the time to learn about Allie's battle and learning a bit about Epilepsy.
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Sarah Weideman 
Yelm, WA
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