6-year-old with Epilepsy wants to help others like her

By Kristin Bien (kbien@wsbt.com)

Lyla Pratt serves up another glass of her lemonade to a garage sale customer. All benefits go to the Epilepsy Foundation. (WSBT photo)

NEW CARLISLE — Thousands of shoppers are heading to New Carlisle this weekend for Hometown Days, and there's a sale that's hard to pass up. It's a six-year-old entrepreneur with an old fashion lemonade stand. Lyla Pratt came up with the idea all on her own, and every penny she earns this weekend is going to a special cause — the Epilepsy Foundation.

"She has Idiopathic epilepsy which means they cannot find a cause for it, says Katie Brasseur. Katie Brasseur, Lyla's mom, says she was a normal baby until she was three. That was when she had her first seizure. You would never know by looking at her, but Lyla has some major health issues. So she is more susceptible to getting sicknesses, illnesses, bacteria in her system, she is frequently sick more. Which leads to her febrile seizures which causes problems with her development," says Brasseur.

That is why all the money earned at the garage sale this weekend will go toward treatment which in many cases is not covered by insurance. Lyla is doing her part too. She has set up a lemonade and cookie stand in the front yard. All the money she makes this weekend, will go toward the Epilepsy Foundation.

"She knows she has seizures and she asks will her brain get better sometimes. That is why she is doing the lemonade and cookie stand. She wants to donate to the Epilepsy Foundation she said, she says she wants to donate for kids with brains like hers," says Brasseur. Lyla has overcome a lot in her six years. But she has a long way to go.

"Epilepsy is dangerous and it can be deadly. In 2008 she was in postictal mode for about 24 hours. That is when she had a relearn how to potty train everything," says Brasseur. But her mom is not giving up. And neither will Lyla.

The garage sale and snack stand will continue through Sunday 8 a.m. until 6 p.m. Central Time









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EPILEPSY AND PREGNANCY

A Litany of Depakote Birth Defects that Are Not Fetal Alcohol Syndrome

July 13, 2010. By Jane Mundy

Seattle, WA: When Cindy was a teenager, she was diagnosed with epilepsy. Her neurologist prescribed Depakote. "I became pregnant and wasn't told to stop taking the medication," she says. "My first child was born with a heart malformation and my second child was recently diagnosed with fetal alcohol syndrome, but I didn't drink when I was pregnant."

Cindy (not her real name) says her daughter was diagnosed with fetal alcohol syndrome because "she has six of the 10 facial characteristics" that define the syndrome. Sonja, another mother who took Depakote while pregnant, was also told that her son had fetal alcohol syndrome—but Sonja doesn't drink at all. Could other doctors mistakenly diagnose Depakote birth defect cases for fetal alcohol syndrome?

There is a litany of adverse events possibly connected with Depakote.

Susan (not her real name) has an eight-month-old son with an underdeveloped right ear. "He has no ear canal and is deaf in that ear and one side of his face is larger than the other," she says. Her son has craniofacial microsomia, a congenital disorder that typically affects the development of the lower half of the face, including the ears. It can lead to breathing difficulties and is the second most common facial birth defect after clefts.

Two other mothers reported that their children were born with cleft palates. "I took Depakote for seizure disorder before and during pregnancy," says Denise. "My baby was born with a soft cleft palate. He needed soft cleft palate repair surgery in 2008 and currently has a delay in speech development."

Kimberly says: "I was being prescribed Depakote for epilepsy and when I became pregnant I was taking 1500mg a day. When I phoned my doctor's office to tell him I was pregnant, he instructed me to continue the drug. A few weeks later I had a miscarriage."

Since Depakote was approved in 1983, the FDA has received six cases of developmental delays, including two siblings reported to have autism. The agency reviewers said it "raises concerns" (6/26/09), but then added, "Further study is needed to further elucidate causality and degree of risk of fetal exposure to (Depakote) and subsequent developmental delay in children."

The drug carries a black box warning alerting users to potential birth defects. Yet a recent study found that "Sodium valproate exposure during pregnancy more than doubles the risk for a major congenital malformation (MCM) in the fetus compared with carbamazepine or lamotrigine," which are also anticonvulsants frequently prescribed for seizures (July 2010: the UK Epilepsy and Pregnancy Register and preliminary results from the European and International Registry of Antiepileptic Drugs in Pregnancy).

The FDA recently sent a letter to neurological and obstetric health workers warning that valproate sodium (marketed as Depacon), valproic acid (marketed as Depakene and Stavzor), divalproex sodium (marketed as Depakote, Depakote CP and Depakote ER) and related products have been shown to increase the risk of cardiovascular malformations, craniofacial defects, neural tube defects and other major birth defects when taken by pregnant women.

Because neural tube defects often develop before a woman even knows she is pregnant, the FDA issued a further warning in December 2009 to "women of childbearing potential." But what about all the women like Cindy who took Depakote before knowing they were pregnant? Those women who were never warned about Depakote and never given the option of taking carbamazepine or lamotrigine?


I was one of these pregnant women who was prescribed a high dose of valproate sodium by my neurologist when I was pregnant. I wonder if it was known or unknown to my neurologist of the potential variable birth defects that could possibly be caused by depakote when he was increasing my depakote intake. He reasoned that it was apt to increase dosage strength to curb chances of seizures happening during pregnancy and since depakote had controlled my seizures well, a need to change my anticonvulsant drug was not deliberated. Thankfully my child was born normal.

Whilst it is important for neurologists to help epileptics lead well controlled seizure free lives by prescribing appropriate AED drugs, it is also pertinent that neurologists make known side effects of drugs to patients. On patients' part, patients must ask neurologists about pros and cons of drugs prescribed, read instructions and labels on packing of drugs and search/read up more information about drugs which can be obtained from medical websites, yahoo and google searches.








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Young And Dynamic Epilepsy Advocate

Amanda is 17 years old. She has epilepsy for the past 5 years and she handles her condition with great courage and determination. She is a fine example of a teenager with epilepsy who does not allow seizures to affect her life in any way. She has a very inspiring blog about her condition and would love everyone to visit her and share their views and comments with her.

( Below is the introduction of her blog )

Dear Readers,

This blog is about my personal struggle and experiences with Epilepsy over the last 5 years. I will be writing to you about what I am feeling each day, and showing how Epilepsy affects my life. I have currently been implanted with a VNS (Vagus Nerve Stimulator). Many people are skeptical and curious about this form of treatment, so I will be blogging with all the facts and side effects that I experience along my way to hopefully being seizure free. I see my Epilepsy as a gift from God, even when it's unbearable. I thank God everyday for blessing me with this disease. God gave me Epilepsy so that I may share it with the world. People need to be informed on what Epilepsy is and how it works. Epilepsy isn't just "a seizure disorder"... it becomes a lifestyle for those affected by it. I hope that you can learn at least one thing from my blog and be able to share it with others. Getting the facts is just one small thing you can to to help Epileptics around the world break the chains of Epilepsy.

(www.mandykrzywonski.blogspot.com)

(Having come to know Amanda and her academic achievements, I had her supportive co operation to write a short article to encourage epileptic students to move on with their studies despite the difficulties they face daily with having epilepsy. Below is her motivating and encouraging write up. Read, be inspired and uplifted - Serene)

"The unfortunate things about epilepsy is that many people let it stop their lives, and often times give up doing the things they love or things that they need to do. Many young students tend to feel as if they are too sick to keep up their studies, especially if epilepsy prevents them from being in school full time. I was and still am one of those students. Your education is the foundation that you will build the rest of your life on it and it is vital to have a strong foundation. Making it through those 4 years of high school or even college can seem impossible when you suffer from seizures.

I personally know a person who actually dropped out of school altogether because they felt their seizures were too much to deal with on top of school. If you look around your community you will find that many schools have programs for hospital bound and ill children living at home. You can have shorter school days or be taught at home with more time to finish your work at your own pace. Some schools are even willing to reduce the amount of work that a student must finish in order to graduate.

I took part in the Northside Independent School District Home Bound Program in San Antonio, Texas and it has benefited me so much. I am also starting to do some classes online at a local college to help myself move forward. Just because it's summer time does not mean that there aren't any ways to move forward in school. It is important to push yourself as far as you can each day because no matter how far away your goals may seem, they are never too far.

I am currently in my last year of high school and I never thought I would make it this far. Thanks to my home bound program I got plenty of rest and I was able to complete my classes in much better health. I encourage all students to use all resources made available for them in their communities because our future depends on what we do now as young students. " Don't Let Epilepsy Rule Your Life! " - Amanda.







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