Spirit Award: Emma Rose

Emma Rose Mazurek was born in the afternoon of December 28, 2013.  She was born a beautifully healthy baby girl.  She was a full term baby weighing over seven pounds.  Her little hands and feet were miraculously meticulous and so fine in their tininess.  She was the most perfect gift our family could have wished for to celebrate Christmas and the New Year. Less than two months later, on February 14, 2014 – Valentine’s Day – Emma was diagnosed with a rare and debilitating form of infantile epilepsy called Ohtahara’s Syndrome.  No words could have prepared us for this news or what we would soon experience.  Despite the best efforts of top pediatric neurologists in the country, Emma’s seizures could not be controlled.  She suffered literally hundreds of seizures per day.  These seizures eventually left her unable to swallow, eat and even breathe. On March 12, 2014, after only 74 days of life, we lost our precious baby.  She passed away at home in our arms surrounded by her loving family.  We could never have expected to lose Emma so young and so suddenly.  She leaves a hole in our hearts so big that words cannot describe it.  A baby’s cry will never sound the same to us again.  We only console ourselves knowing that Emma Rose won’t suffer any more and that she is in a better place.  But we all just miss her so desperately. During Emma’s short time with us, we gained more than we ever believed possible from having and holding and loving such a wonderfully special and pure little baby.  Emma Rose taught us all lessons in love, courage and even hope.  For us, we not only have our precious memories of Emma, but we also have her enduring legacy, through which we can only hope to help ease the journey of other families who are struggling to cope with their own children’s battle with epilepsy.  We intend to use Emma’s life as a beacon to lead us to raise awareness and funds for research and treatment so that organizations like the Epilepsy Foundation of Metropolitan New York can help to better the lives of all those children afflicted with seizure disorders. Emma Rose continues to be our inspiration and our constant reminder of what really matters in life.  Emma, exquisite and everlasting in our hearts, we love you and will miss you forever.

Community Spotlight: Epilepsy Road Warriors Take on the NYC Marathon

From all of us at EFMNY: Our thoughts are with everyone who is recovering from Hurricane Sandy. Currently, our servers are down and our power is out. You can still access our site. However, our staff are unable to access email. We hope to be up and running as soon as possible.

 

National Epilepsy Awareness Month in Metro New York

As November, National Epilepsy Awareness Month, approaches, we wanted to share some of the ways in which our community is coming together to raise awareness and fund epilepsy education and empowerment programs. You may have read our last post about Team Gabriella and our 1^st Annual Into the Light Walk for Epilepsy Awareness on Saturday, November 10^th in Hudson River Park (NYC). We’re also excited to introduce you to the Epilepsy Road Warriors, our first team to run the NYC Marathon this Sunday, November 4^th. Here are the opening paragraphs of their personal stories. To read their full stories and to learn more about how you can support the team, please visit our team page by clicking HERE or by clicking on each team member’s name below:

Barbara Baldauf, Co-Captain:

The call came early one morning two years ago. My brother, sister-in-law and four year old niece, Siena, were at the hospital. Siena had a grand mal seizure the night before. Paramedics were called and struggled for over 45 minutes to stabilize her. We were stunned. There was no indication prior to this day that she had Epilepsy. There was no family history. This caught us all by surprise.

Bert Chantarat:

I was diagnosed with complex partial epilepsy 16 years ago. Regardless of all the ups and downs along the way, I still consider myself to be very fortunate that my condition is very well controlled with medication. To me, no one is perfectly healthy (really); my brain just likes to tease me with unusual signals once in a while, which leads to a seizure. But with such great support from amazing people in my life, nowadays when it happens I have learned to stop asking what I did wrong to deserve this (okay, I usually bitch about it a little bit), get up and move on.

Jennifer Cunningham, Co-Captain:

As a physician – I always thought I understood Epilepsy. I understood the different seizure types. I understood the medications and their side effects. What I didn’t understand was the impact that Epilepsy has on those that suffer from it. That changed when my beautiful and healthy daughter, Nora, suffered her first grand mal seizure at the age of 5. My life and views on everything changed that day.

Laura Mitchell:

I first joined New York’s epilepsy community as a professional in 2004. In that capacity, I had the opportunity to work with hundreds of individuals and families affected by seizure disorder. I also became close friends with a co-worker whose father was diagnosed with epilepsy when she was six-years-old. Together, we share a commitment to raise epilepsy awareness, so that people affected by seizures have access to the best treatments, services and quality of life possible.

Tara Powers:

First, let me explain the grainy photos. They were taken in May, 1981. That’s me and my father running a 10k when he was 33 and I was 6. His favorite moment was when I bent down and kissed the 4 mile marker. A few months after the race, I woke up one morning to find my father convulsing on the floor. I didn’t know that he had had seizures as a teenager, seizures that were vitually ignored at a time when people didn’t want their families associated with epilepsy. I woke my 10-year-old sister and we called our neighbors.

Alex Rodriguez:

I had my first epileptic seizure when I was seventeen years old. Up until that point, I had never really had any kind of health issue whatsoever. I suddenly went from being able to do basically anything I wanted to being worried about being able to drive, being left alone or even something as mundane as taking a shower. My family was worried sick, and really had no idea as to where to turn or what to expect.

Lindsay Romaine:

On December 9, 2011 the world was granted an angel, my cousin Mary Kate Szokoli. She was 30 years old and lost to her battle with epilepsy. I am running in the NYC marathon on November 4 in honor of her. I have set a goal of raising $2,500 for the Epilepsy Foundation so that others my become aware of the impacts and educated on living with Epilepsy.

Evey Weinberger:

Heres our story I was 13yrs old when I was diagnosed with epilepsy and have been living with it ever since. I am very happy to say that I have been seziure free for 2yrs now. Great right? Well a couple of years ago my little 9yr old sister was diagnosed with epilepsy it crushed my heart I always thought better me then my sisters to have to live with this. Then our other sister had a great idea and started a team called C & E Warriors to encourgae us to walk for the cause on November 10 and to honor her sisters that have to live with this disorder.

Community Spotlight: Walk with Team Gabriella

 UP NEXT: THE EPILEPSY ROAD WARRIORS TAKE ON THE NYC MARATHON

At the Epilepsy Foundation of Metropolitan New York, we have the opportunity to work with the metro area’s leading health providers and advocates as well as extraordinary individuals and families affected by epilepsy. That’s why we’re excited to introduce the first in our Community Spotlight series.  This series will highlight the exciting efforts being made within our community each day to increase epilepsy awareness, education and empowerment. This first edition features the story of Team Gabriella as told by her mother, Karen Mendez.

To join Team Gabriella and EFMNY for the 1st Annual Into the Light Walk for Epilepsy Awareness on Saturday, November 10th in Hudson River Park, visit www.epilepsyintothelight.org. For more information, email tpowers@efmny.org or call 212-677-8550.

Gabriella’s Story by Karen Mendez

On December 27, 2007 God blessed me with a beautiful baby girl who I named Gabriella Ashley Mendez. At the age of 2, Gabriella would have these violent awakening episodes which the doctor said were night terrors. At the time, they believed they were normal and that she would grow out of it. But, I knew that something wasn’t right with my baby. Tests were done and the doctors told me that Gabriella was having seizures! SEIZURES?? I felt like my heart was ripped from my chest! Gabriella was diagnosed with Intractable Epilepsy.  This means that her seizures cannot be controlled. My heart aches every day having to watch Gabriella go through this. As her mother, I feel helpless knowing there’s nothing I can do to help her while she’s trying to fight through the seizures. They say God will not give us more then we can handle. Because God has given me the strength, I WILL continue to fight for Gabriella and other children like my daughter. That’s why I’ve started Team Gabriella with family and friends to walk in the 1^st Annual Into the Light Walk for Epilepsy Awareness on Saturday, November 10^th.  You can join us or make a donation to support Gabriella by visiting www.epilepsyintothelight.org.

 

 

 

Q&A with Patricia McGoldrick, NP, MPA, MSN

NEXT UP: Our 1st Community Spotlight featuring Team Gabriella & The Epilepsy Road Warriors

 

The team at EFMNY would like to thank you for your questions! After each post, we’ll post answers from our experts to the most frequently asked questions we receive.  Please note that these Q&A post, like our provider articles, should not be taken as medical advice.  Each patient is unique.  For medical advice regarding your specific condition, please consult your doctor.

 

Q&A with Patricia McGoldrick, NP, MPA, MSN:

1. I just found out that one of the medications I’ve taken for years is available in generic form. If it’s only one of the two medications I take, is there less risk in trying the generic?

This is difficult to answer without knowing which medications you are taking. Some of the medications in generic form are made by the same companies that make the brand name medications and so are consistent. The answer depends on the medications, the doses, how long you have been seizure free and a host of other issues. Please ask your provider, as he or she knows you best!

2. My daughter had surgery earlier this year. We were hoping that she would be medication free. However, she is still on meds. Is this typical for kids who have had epilepsy surgery?

 The type of surgery, the medications, the length of time after the surgery and the cause of the epilepsy must all be taken into consideration, as well as the EEG findings and the post-operative MRI findings. Typically, medications are considered for some period of time after the surgery. Again, this is a great question for your provider! (more…)

Switching Seizure Medications: Part II

How soon should medications be changed?

The typical rule of thumb is that medications should be switched if they are ineffective.  Once a person has been on the appropriate medication for their type of seizures, and has reached the appropriate or maximum dose and is still having seizures, the medication should be changed.  Usually a second medication is added and then “titrated up” (that is adjusted in a step-wise progression) until seizure control is reached or the maximum dose of the second medication is achieved. If seizures are under control, consideration should be given to weaning the first medication.  Having said that, there are often instances when seizure control is reached with two medications used in combination and the person with epilepsy remains on two medications.  The risk of seizures and injury must be weighed against the risk of side effects.

Should medications be changed if there are side effects?

The important thing to remember about side effects is that they MAY occur, not that they will!  Medications are tested in clinical trials in large groups of persons.  Every event that occurs during the time of the trial is reported as a side effect, even if the event occurs only in one or two persons and is not conclusively determined to be a direct effect of the medication.

Often side effects occur when the medication is first initiated and may lessen or resolve over time as the person’s body “becomes used to the medication.”  A prime example is the side effect of drowsiness that occurs with oxcarbazepine and usually resolves within a week or two.  Another is the abdominal upset that can occur with ethosuximide and is managed by eating before the medication is taken.  On the other hand, intolerable side effects should result in changes of medications. (more…)

Q&A with Dr. Fred Lado

NEXT UP: Part II of “Switching Seizure Medications”

 by Patricia McGoldrick, NP, MPA, MSN

 

 

The team at EFMNY would like to thank you for your questions! After each post, we’ll post answers from our experts to the most frequently asked questions we receive.  Please note that these Q&A post, like our provider articles, should not be taken as medical advice.  Each patient is unique.  For medical advice regarding your specific condition, please consult your doctor.

 

Q&A with Dr. Fred Lado:

1. I lost my driver’s license due to seizures. If I switch medications or add a new medication, how long will it take to demonstrate that I can drive? Is the decision up to my doctor or the State?

The rules that govern whether and when an individual may drive are set by each state (Click HERE for more information). In New York State, individuals are required to be seizure free for 12 months before they may drive. If a seizure occurred because an individual reduced a medication on the orders of a doctor, it may be possible to resume driving sooner (after receiving approval of the NY Dept. of Motor Vehicles). Switching medications does not alter the time an individual may not drive.

2. I am now on two medications, and I’ve been doing better. I still have seizures every 3 or 4 weeks. Is it risky to add a third medication at this point?

The biggest improvement in seizure control usually occurs after starting the first medication. The second medication will also usually make a noticable difference in seizure control. The third medication may also help, but less than the first two. Taking more than three medications is unlikely to improve seizure control, but may increase side-effects. The chance of side-effects, particularly drowsiness, increases with each added medication. Most side-effects are reversible, meaning they will go away after reducing or stopping the new medication. There is always a chance of rare side-effects when starting a new medication, but one has to balance the risk of further seizures against the low risk of a rare side-effect. (more…)

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