The Keto Diet: Fat is the Cure

Welcome to the Keto Diet. Breakfast, lunch, and dinner consist of mainly fats in a 3:1 ratio of fats to carbohydrates and protein but can be increased to 4:1 or even 5:1 for younger children. That sounds unhealthily delicious doesn’t it? To be able to eat bacon for almost every meal of the day?

This obviously raises some health concerns for parents who are new to this idea. Not only does it mean that your options for food is severely limited, but your child’s diet is reduced down to foods with a high fat content. Not only that, every meal has to be carefully calculated and weighed out down to the last gram. Many families have to go to great lengths to plan out their child’s meals and can never say,” let’s just order some pizza” at the end of a long day. Snacks have to be packed for sleepovers, your child can never partake in some of the birthday cake, and restaurant outings are an almost nonexistent possibility. So, why would you saturate your child’s diet with fats and place such restrictions on his or her life?

Well for one thing, these diets are usually implemented for severe cases, where medications do little to limit the amount of strokes. As a University College London study noted, 38% of patients had reduced frequency of strokes by more than 50% and 7% had the seizure frequency reduced by more than 90%. When there are some children out there who suffer up to 100 seizures per day, this can greatly increase a child’s quality of living. It’s crazy how fat can sometimes be beneficial.

Nutrition Issues in Gastroenterology. Series 39. June 2006. “The Ketogenic and Atkins Diets: Recipes for Seizure Control.” Retrieved November 11, 2013. http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/TurnerArticle.pdf

New York Times. November 17, 2010. “Epilepsy’s Big Fat Miracle.” Retrieved November 10, 2013. http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?pagewanted=all

Culture Clash: Hmong the Americans

The United States is a country built on the strength of immigrants from every corner of the world. This melting pot also drew in one Hmong family who were escaping the clutches communist soldiers of Laos. Nao Kao and Foua Lee lived among the Americans, trying to adapt to this culture that so greatly differed from their own set of beliefs and customs. Their first child to be born in America was Lia Lee, who had her first seizure at the age of 3 months.  

The Hmong name of epilepsy is qaug dab peg, which translates to "the spirit catches you and you fall down*" illuminates the Hmong belief that those who are epileptic are gifted with the ability to enter the spirit realm. Amongst the Hmong, the epileptic become shamans, helping those in need of physical and emotional aid. The American standards of treating the ill falls out of place, replaced by the herbs, chants, and other more spiritual acts for healing. Can you see the trouble brewing yet? 

The doctors who cared for her tried to give her medications and invasive procedures such as spinal taps and transfusions that her parents did not understand. Her parents looked to shamans, herbs, and special amulets to help, which the doctors did not understand. The cultural ignorance on both sides caused much conflict - so much so that at one point, Lia was taken out of her loving family to foster care because of what the doctors saw as negligence on her parents' part. In the end, Lia suffered a grand mal seizure that left her in a coma, which she never woke up from.  

The problem reduced down to the lack of communication between the Hmong and the American doctors and shed light on the problem of cultural barriers that need to be torn down in the world of health care. But, this also shows the varying views different people can have on epilepsy that is affected by their cultural heritages. Unfortunately, the misunderstandings between Lia’s family and her doctors brought upon a situation for her that maybe could have had a different future. Among the Americans, the lack of cooperatively and education on what epilepsy means to the two parties ultimately ended with no winners.

Los Angeles Times. September 20, 2012. "Lia Lee dies at 30; figure in cultural dispute over epilepsy treatment." Retrieved October 15, 2013 from http://articles.latimes.com/2012/sep/20/local/la-me-lia-lee-20120920. 

Los Angeles Times. September 18, 1997. "The Soul Catcher." Retrieved October 16, 2013 from http://articles.latimes.com/1997/sep/18/news/ls-33374/2. 

New York Times. September 14, 2012. "Lia Lee Dies; Life Went On Around Her, Redefining Care." Retrieved October 15, 2013 from http://www.nytimes.com/2012/09/15/us/life-went-on-around-her-redefining-care-by-bridging-a-divide.html?_r=0. 

US vs. the World

Let's take a step back for a second from us here in the United States, and compare how the rest of the world feels about epilepsy. How well do you think we stand in comparison to other countries in terms of the stigma that face people with epilepsy? 

It's sad to say that social stigma is common for epilepsy in many regions of the world. In countries such as Cameroon, Liberia, and Nepal, it is a common belief that dark forces lie behind the cause of seizures. Either there are signs of demonic possessions in people who are "weak", or it is the side effect of messing around with sorcery. In Uganda, as well as many other countries, people with epilepsy are not allowed to eat from the communal food pot for fear of transmitting the condition through saliva. Marriages can be nulled, in China and India, if one spouse was found to be epileptic, and in just 1996, in the Netherlands, a person was whipped and placed in isolation because people believed her seizures were due to magic. Absolutely ridiculous, wouldn't you say? 

How does the United States measure up? Social stigma is still prevalent in many aspects of the American life. In general, there is a reluctance for people to open up about their condition for fear of embarrassment and being treated differently. If we look at our history, there was a time when many states even prohibited people with epilepsy from marrying. The last state to remove this law did so only in 1980! (In the UK they repealed a similar prohibitive marriage law in 1970) In addition, up until 1970, many restaurants, theaters, and public places were legally allowed to deny people with epilepsy. Crazier still, our country's history shows 18 states that provided eugenic sterilization of people with epilepsy until the '60s. Back then, it was considered normal for the state to go through with compulsory (forced) sterilization for criminals, the mentally ill, and minority groups.* 

People with epilepsy all around the world face economic problems as well. In countries such as India, Nepal, and many others, people with epilepsy are given fewer roles and are viewed almost as burdens by their families. As a result, epileptic people tend to underrate themselves and throw away their potentials.  In China, 31% of people believe that people with epilepsy shouldn't hold jobs.  In Germany, Italy, and the United States, statistics show that of the people with epilepsy of working age, only 40-60% are able to find jobs, usually in positions below their potential, 15-20% are unemployed, and 20% retire early. According to the World Health Organization, it is difficult because epilepsy tends to "affect people when they are young at ages when they are most productive, often leading to unavoidable unemployment." 

And so, although some people may believe that the superstitions and stigmatism of other countries seem ludicrous and outlandish...if you take a closer look, you may realize that we may all be in the same boat. However, it is in hopes that by shedding light on the discrimination that epileptic people have faced to drive us to push towards greater movements against the stigma. Educate yourselves and spread the word. 

*In case you were interested, the sterilization of minority groups continued well into the 70s, with California being the lead state by more than double the statistics. Even just recently from 2006-2010 it was discovered that California Institution for Women in Corona had 148 women sterilized by being pressured or not given the proper information - all procedures violating the legal protection these women had (http://cironline.org/reports/female-inmates-sterilized-california-prisons-without-approval-4917). Absolutely disgusting. 

World Health Organization. February 2001. "Epilepsy: Social Consequences and Economical Aspects." Retrieved Oct 12, 2013 from https://apps.who.int/inf-fs/en/fact166.html. 

University of Vermont. April 2009. "Eugenics: Compulsory Sterilization in 50 American States." Retrieved Oct 12, 2013 from http://www.uvm.edu/~lkaelber/eugenics/.

Classroom Struggles

By Koeun Choi

School is pretty darn difficult. The endless stream of tests and assignments can be overwhelming to the average student. Students who deal with epilepsy also have additional hurdles to overcome in the academic environment. Because epilepsy is a spectrum disorder, there are varying degrees with which it can deter - not just academically but also socially - a child's experience at school.  

Now, there are generally 2 types of seizures a person can have. An absence seizure is when a person "blanks out." It is often mistaken for inattentiveness, which sucks because most people who experience it, are not even aware that the seizure occurred. The second type involves convulsions and is the more widely recognized, but often misconstrued version of seizures a person can experience. (When somebody is convulsing, a widely misconceived notion is that you need to put something in their mouth to clamp down on, or hold restrain their bodies down - not necessary. Just place something soft underneath their head so they don't hurt themselves, and let the process end on its own.) After experiencing seizures, some may be energetically drained and may require recovery time. When something like this happens in class, it obviously takes time away from the student's time to learn. Not only that, seizures can occur during the night affecting how much sleep a student gets, making it difficult to focus the next day. Seizures in general disrupts brain activity and may affect cognitive learning and memory capabilities. Antiepileptic drugs can also present side effects deterring brain function by causing drowsiness and inhibiting concentration/memory.  

Additional support should be provided for the student. However, a gray area looms over questions such as how should the teaching curricula should be set and adapted towards the child - if a student's learning is significantly slowed down, should he or she be separated into special educations class? What if a school is short staffed for such classes? What if they refuse to modify school policies on grades and tests for a child? What if the child becomes too much of a liability to be allowed to participate in a school trip or activity? 

As you can see, not only are there the physical problems when dealing with epilepsy, many children can begin to suffer socially because of epilepsy. With some of the questions brought up above, parents can look towards their children's legal rights as dictated by the Individuals with Disabilities Educations Act (IDEA), a federal law that entitles all epileptic children to free and appropriate education in the most "normal" setting possible. 

The embarrassment and the social stigma a person feels can develop at a very early age in school if the seizure episode isn't handled properly. As such, it is important for educators everywhere to be mindful of what to do to accommodate the student's learning. If convulsing occurs during class, it could potentially embarrass the child and frighten his or her classmates. It becomes a crucial moment to take action and be able to explain what had just occurred - "What is a seizure? Are they mentally ill? Is it contagious?"  are all questions that if not answered properly or even just overlooked can lead to further misconceptions and worsen the stigma. It is important to stress that people with epilepsy are no different than you or I and the best thing to do when a student convulses is to keep him/her safe and be a friend when it is over. 

Ultimately, the best way to fight the stigma against epilepsy starts right here with education.  

Resorces 

Epilepsy Foundation. 2005. "Elementary and Secondary Education and Federal Law." Retrieved October 3, 2013, from http://www.epilepsyfoundation.org/resources/epilepsy/upload/7-StudentsK-12.pdf. 

Epilepsy Foundation. 2013. "Helping Children Understand." Retrieved October 3, 2013, from http://www.epilepsyfoundation.org/livingwithepilepsy/educators/socialissues/helping-children-understand.cfm.  

Epilepsy Foundation. 2013. "Your Child at School and Child Care." Retrieved October 3, 2013, from http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/parents/your-child-at-school.cfm. 

Epilepsy Society. 2013. "School, Education, and Epilepsy." Retrieved October 3, 2013, from http://www.epilepsysociety.org.uk/school-education-and-epilepsy#.UkzzkIZQEiU.

Got Treatment?

By Koeun Choi

For many, epilepsy can be a very manageable disease. Treatments for epilepsy can range from surgery, specialized diets, medical devices, and/or a cocktail of drugs. The right course of treatment is directed by the doctor and requires a multitude of tests and trials beforehand. Unfortunately, all these different pathways come with sometimes even more serious consequences and side effects. In addition, 10% of the population of people who suffer from epilepsy receive no benefits from the current available treatments. Tackling epilepsy can be challenging, and it requires true dedication and commitment from families to overcome it.  

First, doctors usually look towards prescribing anti-epileptic medication. About 70% of the epileptic population relies on the prescriptions, but it is not a cure. They must take their medication at least once a day. Some of the common ones like Tegretol, which is used for mixed seizures, have common side effects like fatigue, nausea and dizzieness. But others like Depakote, Valium, and Fycompa can cause problems with memory, cognitive and language delays for children, and behavioral changes. For some children, it makes learning difficult; and especially if they experience seizures in class, it can make having epilepsy a socially depressing disease. Usually, it is from the embarrassment that the kids have trouble with in class more so than anything else. Stigmatism in the classroom is a main issue that children face with epilepsy.  

Surgery would require studying the patient's brain and focusing on the specific area that causes the seizures to start and actually removing the problem causing area. A less severe method, or for cases where the area triggering the seizures are too large, there is the implantation of a vagal nerve stimulator. This acts almost like an electrical pacemaker, placed by a large nerve in the neck where short bursts of electric energy are directed into the brain. Unfortunately, these methods don't always work. About the 30% of the patients who cannot rely on the medication or side effects looks toward these options. 

Epileptic people are  also known to go on the ketogenic diet, which essentially is like the Atkins Diet for bamfs. It consists of almost all fat and no carbs, which could make eating out very difficult. How it works, for those of you who are interested, is that as the body receives less and less glucose in the person's everyday diet. When the body runs out of carbohydrates, which it definitely will because of the such low quantity consumed, it will continuously rely on burning fat which almost mimics starvation. How this helps derail seizures is not yet understood, but it's pretty cool. This however, needs to be heavily controlled, down to the last calorie, with the proper consultation of doctors and nutritionists.  

It truly is difficult to imagine how heavily some families can be affected by epilepsy, especially when they cannot rely on the available treatments, or if the treatments bring about harsh side effects. But it is important to recognize the strength it takes to live with epilepsy, and be able to admire those who stand by them.  

References 

Center for Disease Control. 2013. "Frequently Asked Questions." Retrieved September 21, 2013, from http://www.cdc.gov/epilepsy/basics/faqs.htm#6. 

New York Times. Feb 20, 2007. Aliyah Baruchin. "Battling Epilepsy, and Its Stigma." Retrieved September 21,2013, from http://www.nytimes.com/2007/02/20/health/20epil.html?pagewanted=all. 

National Institute of Health. 2013. "Seizures and Epilepsy: Hope through Research." Retrieved September 21, 2013.