Come one Come all!

Don't forget that Saturday is 'Seize the Night" 5k fun run!  We are going to have so much fun and would love if you all would join us!
 


If you would like to participate there are still tickets available just go to http://utahepilepsy.org/ to get started!  Cant wait to see you!

Ready to Run?

Hey everyone!  I hope you all had amazing summers and are ready to get back into the swing of things!  To start off fall Epilepsy Alliance of Utah is hosting their annual 5k Fun Run!  All you need to do is hop on the website, get your tickets, then meet us at Sugarhouse park for a fun jaunt around the park!

Cant wait to see you!

How is everyone's summer going?

As the summer 'heats up', literally and figuratively, I want to jump back into blogging by reminding everyone about driving after seizures.  Below is a general fact sheet about when and how to go about driving post seizure:

Driving when you have had seizures 

• For most people, driving represents freedom, control and competence. Driving enables most people to get to the places they want or need to go. For many people, driving is important economically – some drive as part of their job or to get to and from work. Others drive to be able to shop for necessities, to maintain social connections or participate in activities.
• Driving is a complex skill. Our ability to drive safely can be affected by changes in our physical, emotional and mental condition. The goal of this brochure is to help you, your family and your health care professional talk about how having had one or more seizures may affect your ability to drive safely.
  

How can having a seizure affect
my driving?

• Having a seizure can cause you to lose control of your body, change the way you act and sense things, or make you pass out suddenly. If you have a seizure while you are driving, you could lose control of your car and cause a crash. You could hurt yourself and others.
  

Can I still drive if I have had seizures?

• Many people who have had seizures are able to return to driving once their seizures are under control. But your return to safe driving after one or more seizures depends on the following key factors:
  
• The cause of your seizure; 
• The type of seizure you typically have; 
• The laws of the state in which you are licensed; and
• How long you have been free of seizures that affect your awareness

If you're wondering about how Utah stacks up to national law here is a simple way to remember...

Seizure freedom and medication history are quite dependent on your ability to drive after being diagnosed with epilepsy.  As I believe it, you are allowed to drive if you have had over 3-6 months of freedom while on medication.  The medical release form that your physician signs regulates this and even allows for one breakthrough seizure every 2 years.  The inability to drive is enforced when your medication doesn't allot you any consistent seizure freedom.

Now all of this is dependent on on your physician.  I have seen some doctors be more conservative with the driving privileges they will sign off on and others more liberal.  The best way to know is to sit down at your next appointment with your doctor and talk it over!

Have a wonderful summer!

Trina  

Today's the day!!!

Hey everyone! Today is the big day for LoveUT GiveUT bad we would be so appreciative of a small donation! Tell all your friends and let's see if we can meet our fundraising goal!!!

Happy St. Paddy's!

I just wanted to remind everyone to be safe during these St. Patrick's day festivities!  Remember that alcohol and sleep deprivation are great triggers for seizures... So get your sleep and imbibe in moderation!

Don't forget to get your tickets for the Charity Casino Night in April!

Oh and Love UT Give UT is almost over.. so if you are able to we would be very grateful for your support!

Just a reminder!

Hey everyone the Charity Casino Night is fast approaching!  Don't forget to get your tickets at our website http://www.utahepilepsy.org/ on March 1st!

Interesting article...

I was reading the paper last week when I came across a very interesting article from the American Epilepsy Society President, Elson So.  In it he was explaining that while cannabis oil may not be necessarily terrible for a person with epilepsy; we must do more research before making any new laws.  This was in reference to a house bill proposed in this session of the Utah state legislature.
What are your thoughts on researching a holistic treatment thoroughly before wide acceptance? Should holistic medicines be scrutinized as heavily as pharmaceuticals?
Here is the article if you would like to read it!

Op-ed: Research needed on cannabis epilepsy treatments

By Elson So

First Published Feb 05 2014 05:10 pm • Last Updated Feb 06 2014 11:42 am

Utah’s move to introduce legislation that will allow consumers to buy cannabis oils (CBD) and other marijuana derivative products is not based on solid research.

Our hearts are with families and their children who live with severe forms of epilepsy like Dravet Syndrome, and we applaud the efforts of those leading the initiative to find remedies. Yet, as physicians and researchers specializing in treatment of this challenging spectrum of disorders, we must ensure that the professional and lay community does not make treatment decisions that are not based in sound research and science.

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While there are positive anecdotal reports from the strain of CBD known as Charlotte’s Web, robust scientific evidence for the use of any type of marijuana for treatment of epilepsy is lacking. The lack of information does not mean that marijuana is ineffective for epilepsy. It simply means that we do not know if marijuana is effective, and just as important, if it is safe.

Little is known about the long term effects of using CBD or any marijuana derivative in infants and children on memory, learning and behavior. This is of particular concern because both clinical data in adolescents and adults and laboratory data in animals demonstrate that there are potential negative effects of marijuana on critical functions like learning. Such safety concerns coupled with a lack of evidence of efficacy in controlled studies means that we do not know if the benefits of marijuana for treatment of seizures outweigh the risks.

Several members of the American Epilepsy Society are conducting clinical trials of CBD. There are several steps in a clinical trial and we need to wait to draw conclusions until there has been a trial with a control group or a placebo-controlled trial. The preliminary steps underway now will not have a placebo group and will be used for dose finding, tolerability and to understand how human bodies absorb and process the drug.

If these initial safety studies are encouraging, then further controlled studies will be needed to determine if CBD is effective in the treatment of seizures and in which patient populations (i.e., what ages and types of epilepsy).

These studies are critical, as the pathway to finding new drugs and treatments is full of treatments once thought to be the "miracle cure" that were rejected after the rigors of a clinical trial. These studies are especially important in a condition like epilepsy that has a very variable course. Sometimes significant improvement can actually be a result of unpredictable ebb and flow of the disease.

Treatments cannot advance without clinical trials. Clinical trials are necessary to test the safety and effectiveness of new therapies and to develop better ways of using known treatments.

The American Epilepsy Society is supportive of well-designed clinical research to determine the safety and efficacy of marijuana in the treatment of epilepsy. We urge the entire community of medical professionals, patients, families and regulators to focus their efforts on getting accurate information and allowing proper research to be done.

States around the country are having the same debate as the one in Utah. We hope that the needs of people living with epilepsy and their families will continue to be central to the debate. However we also urge that eagerness to find treatments not overshadow the need to conduct rigorous research and testing. Together as an epilepsy community we must take this step to find the answers for people living with these severe forms of epilepsy.

Elson So, M.D., is president of the American Epilepsy Society

An important movement in our Utah legislature; Legislators are in the process of taking a bill to the floor regarding the use of cannabidiol (CBD) for Utah children with severe epilepsy. Although there may be many opinions on the use of Medical marijuana, we have found three interesting published writings that we would like to share.

(Click here to view a letter from Elson So, M.D., President of the American Epilepsy Society. Also, clickhere to view a letter from Brandon A. Zielinski, MD, PhD - a pediatric neurologist at Primary Children's Medical Center. Lastly, click here to view an article from The Opinion Pages of The New York Times)
 

Also don't forget about the upcoming Casino night, St. Patrick's Day Parade, and LoveUTGiveUT campaign!!!