Please Support 11-Year Olds Medical Battle
Organized by: MissN S
My healthy and HAPPY daughter started facing medical problems about two years ago. She was in third grade attending elementary school when she came home and said she "couldn't see" at school. Her vision had literally went pitch black, she walked into a table and had a slight head twitch to the left. As soon as I was notified I took her straight to the emergency room. Tests were ran, blood work complete and we left with no answers but a referral to see a Neurologist. We had to wait two months to be seen. After our first appointment with the Neurologist -- he said we needed an EEG because in his opinion this didn't seem like a seizure. As we waited weeks for test results school was back in session and my daughter was dealing with these "blackouts" and temporary vision loss more frequently. Before our follow up appointment to review the EEG results my daughter suffered from a Grande Mal seizure while she was at school. She has never had any seizure history or health complications prior. As a mother I was devastated -- I didn't know why this was happening or what I could do to prevent my child from suffering. We successfully managed to urge the Neurologist to see her sooner. After visiting with him he explained that her EEG was fine and there was no seizure activity. Still without answers we were instructed to come back months later. Within the next several weeks my daughter had these "black out" episodes several times each day. She would stare off to the left of her, blink rapidly and have a conversation. As the episodes increased and my daughter had no recollection of what had happened. Then the vomiting started. After more then enough trips to the ER -- a Neurologist from UC Davis Children's Hospital had diagnosed her with "Migraines with Auras." Once it came time to see her primary Neurologist -- he reviewed the tests her chart and hospital files and subscribed a medicine. After using the medicine for two weeks, my daughter experienced rapid weight gain. A total of 30lbs in less then 15 days. We we're told to pull her off the medicine because of the side effects and the fact that my daughter was still suffering from several episodes daily. After each migraine attack she would be incoherent and immediately have to lay down and sleep. The symptoms of her condition caused to her struggle in school. She started feeling depressed, attacked, helpless and cried many times that she no longer wanted to go to school. She had start facing not only a medical condition but bullies at school too. It was too much stress on my, then 10-year old daughter. Doing the best I can as a single mother of two I moved my kids to a nearby city for a fresh start. That now brings us to 2015. Prior to this current year my daughter had only suffered from one seizure (Grand Mal) in her entire lifetime. As February 2015 arrived my daughter suffered her second Grand Mal seizure at home the day before her 11th birthday. Earlier in the day I got a call from the after-school care provider saying my daughter was having excruciating migraines and vomiting several times. I immediately left work to pick up both her and younger brother. About 30 minutes after we got home and she was able to eat something -- she said how she felt much better but she wanted to just lay down and listen to music. I started doing light housework and checked on her every few minutes. I was startled by a loud rattling and banging noise and I ran straight to my daughters bed. This was the first time I had witnessed my daughter seizing. I tried my best to stay calm because my 5yr old was with us too. After 911 came we had more tests done, but once again we were told everything was normal. As a mother I knew everything wasn't just fine. I felt like to much time was being wasted "waiting around" while my daughter is continuously suffering. I requested a referral for a Neurologist from UC Davis Childrens Hospital to be assigned as her primary care doctor. As a mother I felt like we deserved a second opinion -- in which we we're denied. We were sent home with a new prescription for a low dosage seizure medication. About a month went by and the constant migraines with auras continued. Then she suffered her third Grand Mal seizure. We we're told to continue the medication and come back in a few months by her Neurologist. May 2015 we went on a camping trip with two other family members. The day was eventful and my daughter only had one episode that day. After resting for a while she said she felt fine and we all relaxed around the campfire for awhile. Once we fell asleep I heard my daughter gurgling and choking followed by full body jerking. This was now her fourth Grand Mal seizure. I made sure she was on her side, breathing and stabilized. Once firefighters made it to the campground she regained consciousness and was speaking. Minutes later she turned her head towards the left and went into her fifth Grand Mal seizure. Being that she had just suffered two back to back in one night the ER Dr was finally able to diagnose her with a seizure disorder. In just the past few months my daughter has went from having one seizure to a total of five. Even while taking seizure medication. Now after two years of countless tests we have a partial answer. We are still scheduled to undergo more tests to try to pin-point the cause. This has been an on-going struggle for my 11-year old daughter, 5-year old son and myself. I am the sole-provider for my children, work full-time and do my best to provide for my family. Supporting my daughter every step of the way has forced me to choose between my daughter or work. As a parent there is no choice -- when your child is sick, hurt, in pain or scared you drop everything to ensure they are okay. As of this school year she hasn't felt well enough to make it through a full week. As an employee, I've used every available resource; sick hours, vacation. Things have now boiled down to no-pay when I have to leave early in emergency situations pertaining to my daughter. I created this fundraiser to raise money to support my kids and I as we continue to fight this battle together. Missing so many days from work to care for my child has caused us to fall behind in rent and bills. It will be a blessing and relief if we are able to raise enough to get us by. I am constantly praying we find the answers we need and learn as a team how to keep the seizures under control. Once her condition becomes more stable I would be able to resume my full-time schedule.