womenTALK: Blog

Monday, Jul 19th 2010

Don't Give Up on Your Child's Epilepsy

By Shelley and Alyssa KaysShelley Kays

Becoming a mother for the first time 20 years ago was absolutely thrilling. My husband and I were instantly in love with our vivacious, beautiful little girl, Alyssa. Her brother Tyler came along a couple of years later, and we felt truly happy.

All was great with our little world until one day at the age of six, Alyssa had a seizure. Her jaw moved to the left and started twitching. She looked up at me with her big eyes and said, "Mommy, what's happening?" Somehow, I knew she was having a seizure. Over the following weeks, she continued to have seizures, and after a battery of tests, my fears were confirmed—she had epilepsy.

Medications reduced the seizures but did not completely stop them. The seizures and medication side effects left Alyssa exhausted and made it difficult for her to learn in a traditional classroom setting. We requested special assistance for her, but the school system denied the request, citing Alyssa's above average intelligence tests.

We knew we had to take matters into our own hands—we spent hours upon hours every night helping Alyssa relearn everything from school each day. Ultimately, we sought the help of a neuropsychologist, who determined that the epilepsy was affecting the portion of her brain responsible for memory. Of course she was having trouble in school; she couldn't remember what she was learning! Needless to say, I marched down to the school administration office, and from that day on, Alyssa received the support that she needed, with visible improvement.

Although her condition wasn't worsening, it also wasn't improving. We couldn't give up on the hope that she would get even better seizure control. So, we started taking Alyssa to see a pediatric epileptologist (a neurologist who specializes in treating children with epilepsy) when she was in middle school. We worked very closely with Alyssa's doctor—trying treatments and asking questions. We were determined to stop the seizures. Ultimately, it was established that Alyssa was a candidate for brain surgery. After much discussion and debate with my husband and Alyssa's doctor, we decided to go for it. The surgery was a success and, with an updated combination of medications, Alyssa continued to improve.

She went on to graduate from high school in the top 20 percent of her class and just received an associate's degree in graphic design from a local community college. Now, Alyssa is moving away from home to attend a four-year university. We are so proud of her. Of course we are also nervous, but that's nothing new for parents sending a child off into the world. I'm most concerned about what will happen if Alyssa has a seizure at school, so we are taking precautions. For example, I spoke with the health clinic staff, and Alyssa is going to explain epilepsy to her teachers.
 
I've learned a lot from Alyssa's journey with epilepsy. Here are my tips for mothers managing a family when a child has epilepsy. I hope that my experience can help other parents who have children with chronic conditions.

1.  DO NOT give up—aim for control of epilepsy. The goal is no seizures with minimal medication side effects. If the doctor even suggests that you should settle for less, go elsewhere. Your child's future is on the line.
2.  Teach your child about the importance of getting enough rest and always taking  medication as prescribed.
3.  Spend quality time with all of your children. Alyssa's younger brother picked up on my stress at a very young age. My husband and I realized that we needed to spend more one-on-one time with him.
4.  Give your child some independence so they can grow into a unique individual. It is so hard to give a child space, especially when they have a chronic condition, but I honestly believe that this has been critical to Alyssa's success.

Watch Shelley and other advocates as they talk about living well with epilepsy by clicking here.

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Comments

Nov 02, 2010 09:Nov 9 | Sue said

Having a child with Epilepsy

I read this story and began to cry, I myself had seizures upto puberty then until this past few months they stopped without any medication or treatment. I am now a 43 year old woman who in past few months has began to have them again. I too was elated when in 1993 I had a beautiful little girl, things were great but at 18 mnths she began having partial complex seizures for about 7 years, then until 14 she was fine. She has been through multiple tests within the education system and they advise she has no working memory so has difficulty retaining what she is learning on a daily basis in school, fortunatly our school systems here have gotten her help with that. However 2 years ago at the age of 15 she began having tonic clonic full body seizures, frequently. It broke my heart cause she was a driven show jumper training weekly and competiting every chance possible, we had to take her out of that for 10 months due to the seizures. Although even after 10 months away from riding her 16th birthday the doc gave her the okay to head back into the arena, after just over 2 weeks being back in the arena training she did her first show on her birthday and was only 1 point away from champion for the show! Of course we embarrassed her presented her with roses and the entire arena sang happy birthday as it was a special one for her. However since then she is still having seizures although not quite as often, she has resigned herself to the fact that she will likly never be able to drive a car. We have inquired about the surgery, however she is not a candidate due to some of her seizures are coming from the brain stem itself, this was a big blow to find out. She has researched and spoke with her neurologist and we are now in the process of applying for a therapy dog to help her have some empowerment as a teen and we are anxious about this process. However the ignorance of the public amazes me, the kids at school are aware of her disease and possible side effects of this yet they still bully her and treat her ignorantly to the point I have spoken to the school several times now. There are kids who do things to purposely try and cause her to go into a seizure. I would think this being 2010 that that stigma and ignorance towards epileptics would of improved. I tell my daughter all the time that she is beautiful and that she can do whatever she sets her mind to, she is fortunate that she has a great support with her family. Her younger brother thankfully has only ever had one seizure although it gave him more understanding of how is sister feels after a seizure and it was the first time my daughter had ever seen anyone having a seizure. So even though I wouldnt wish this on anyone, there was good that came out of it, as they both got to see how the other feels during a seizure.

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