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Our family living with epilepsy

Wed, 01/09/2019 - 23:00
My youngest daughter, Charlee, had her first grand mal seizure when she was ten months old. The doctors kept telling us it was just febrile. I knew it wasn't but they wouldn't listen. She went on to have several more seizures over the next several weeks. When they finally did all the testing and officially diganosed her she was 14 months old. They put her on keppra. Her seizures were uncontrolled and they kept increasing the dose. Finally they got a high enough level, but then the side effects wreaked havoc on our family. She would have full on screaming temper tantrums that would last 6-8 hours. Usually they started about 1-2 am. I never slept. It took months to get her neurologist to listen. He put her on b-6. Try getting a 1 year old to take a pill. Had to crush it and mix it in something just to have to hold her down to give her her medicine. It broke my heart, but the tantrums only lasted 2-3 hours and they weren't every night. We fought with the neurologist because Charlee had less speech at 18 months then she did at 10 months. He told me I was overreacting and he was the expert. I took her to her pediatrician who immediatly sent us to Vanderbilt for a new neurologist. For the next 8 months we drove 4 hours away to see a specialist, but as you know when getting a new doctor, cue all the testing over again. Charlee continued to have about 1 grand mal seizure a month, but still didn't sleep at night and we started to notice staring spells. We were frustrated. When she turned 2 we had decided to move our family to Florida. It was there when she was 2 and a half she contracted viral encephalitis, whiched triggered an autoimmune response that put her in a comma for 4 days. Doctor's didn't know what was going on. When she woke up she was paralyzed with no ability to communicate. We stayed in the hospital for 11 days. Most of the time there, the doctors told us she may never recover and we might not get to take her home. Thank God she was getting better and we were able to go home, but she couldn't talk, walk, feed herself, or even sit up. Months of therapy and sleepless nights and she started making progress. She still would have the occasional grand mal seizure, but we were getting a handle on it with new meds. They put her on trileptal. No more temper tantrums. It took a year and a half of therapy to get her back to a three year old level, she is 4 now. During that time they continued with testing and also diagnosed her with petite mal seizures. She also developed photo sensitivity. Life got stressful. Her older sister who is 7 is so caring and an amazing little girl. She will cover her sisters face anytime we are near flashing lights. I feel so bad that both girls miss out on so much due to the epilepsy. Even with all of this going on Charlee is never without a smile on her face, but I'm losing my mind. Very few people around us are understanding of our life. Sometimes I have to cancel plans because I can tell Charlee is overwhelmed and is close to having a seizure, or we can't go to an event or party because they might have flashing lights or fireworks. Even our own family doesn't understand. They kept telling me that I'm overreacting and she will be just fine, it's just a seizure. I'm so brokenhearted at what my daughter's future will be. I'm terrified of losing her. I am exhausted from the sleepless nights just listening to her breath. I'm worn out from the constant battle with the insurance and the school. Sick of family not understanding or taking her into consideration. I'm just trying to give her a somewhat normal life. But what makes me mad is the lack of support and the understanding in the community around us. We are strong and will continue to fight. Charlee is a warrior. Just remember you are not alone and it is okay to feel like you have lost a battle, but the war isn't over!

Comments

One of the things with

Submitted by Jazz101 on Thu, 2019-01-10 - 18:59
One of the things with Epilepsy is that you are not going to get everyone to understand how you feel. Sometimes the most complex thing is explaining to a person how you feel about something if the person isn't a listener. What helps is finding a neurologist who specialized in Epilepsy. Not every neurologist is in that areas. Some deal with individuals who experience a stroke or in some cases Parkinson's. So you want to start with a neurologist who knows a good bit about Epilepsy.There is a hospital in Florida with good ratings in pediatric neurology and neurosurgery. It's called Nicklaus Children's Hospital. According to US News and World Report, they are rated number 11 in the best in the United States in neurology and neurosurgery. Here is the link to pediatric neurology and neurosurgery.https://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgeryI am not a parent so I can only imagine how overwhelming this can be given you are also having come challenges with family members. Many parents at this site might be able to offer you some advice in that area, the parent and family area. Make sure you next posting is in the parent section. That way it is more probable that other parents can area about it. Best Regards

I feel for you and Charlee.

Submitted by Flower Roberts on Tue, 2019-03-12 - 09:18
I feel for you and Charlee. Maybe our stories will help you.  http://seizuremamaandrose.orgAlso there is a great Wordpress blog named Epilepsy dad.

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