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…)

Switching Seizure Medications: Part I

When should you consider switching medications?

There are two circumstances when one should consider changing medications, when the medication is not completely effective in stopping seizures, and when the medication is producing unacceptable side effects.  Cost of a medication may also be a reason one must consider switching to less expensive medication.  One should not, however, switch from a well-tolerated and effective medication to a different medication just to try the newest medication, or in response to advertising, or on the advice of a friend or acquaintance, since the effectiveness and side-effects of the new medication are difficult to know in advance and may result in worse seizure control or new side effects. For those individuals taking one or two medicines who are still having seizures, your doctor may recommend adding a seizure medication rather than switching from one medication to another.  Taking more than three seizure medications, however, rarely improves seizure control but often results in more side effects. For individuals taking two or three medications, switching out one medication to try another medication is the usual recommendation.

What are the risks of switching medications?

Switching medications involves risks, namely the possibility that seizure control will worsen, or that the new medication will cause unanticipated side-effects.  Since usually one is undertaking a medication switch because of either poor seizure control or side-effects, it is sometimes difficult to know whether the possible benefit of changing medications outweighs the risk.  This is a very individualized decision, since each individuals lifestyle and seizure type are important factors.  For example, if one individual has seizures occurring several times a month, then the benefits of a medication switch outweigh the risks of worsening seizure control, since seizure control is already poor.  On the other hand, if another individual has a seizure once every 1 to 2 years, then the risk of worsening seizure control is a greater concern.  One may still want to change medications to achieve complete seizure control, for example, to obtain a driver’s license. However, this individual and their doctor may approach the switch more gradually, first adding the new medication to the old one, and then after sufficient time – even 1 or two years – gradually tapering the older medication. (more…)

Q&A with Ruth Shinnar, RN, MSN

NEXT UP: Part I of “Switching Seizure Medications”

 by Dr. Fred Lado

 

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 Ruth Shinnar, RN, MSN:

 

1. I’ve heard that switching between brand drugs and generics can affect a change in seizure control and patterns. Is that true? Should I be concerned about using generics?

Switching between brand drugs and generics usually does not have an effect on seizure control. Unfortunately, there is no way to determine who will be affected by switching. The Federal Drug Administration (FDA) has set manufacturing guidelines for makers of generic drugs. The generic drug manufacturer must prove its drug is the same as (bioequivalent) the brand name drug. When a drug, generic or brand name, is mass-produced, very small variations in purity, size, strength, and other parameters are permitted. FDA limits how much variability is acceptable. Most people will not be affected by this variability but some are. If you are one of these people you can be prescribed the brand name and provide evidence of need to your insurance company with the help of your health care provider.

2. My daughter has experienced significant weight gain since she started taking seizure meds. While we recognize her concern, my husband and I are afraid that switching her medications will trigger more seizures. Do you have any recommendations for teens with epilepsy who have weight issues? 

Healthy eating habits and regular exercise are encouraged for everyone but medications can cause weight gain even when eating healthy. If the weight gain is felt to be from the antiepileptic medication a change may be beneficial. There are ways to safely switch over to another medication and you can discuss how to do this with your daughter’s health care provider.

3. Although my seizures are well controlled with my medication, I do get headaches more often that I used to. Is this typical? Should I talk to my doctor?

 Headaches can be a side effect from antiepileptic medications, although it is uncommon. Your neurologist can perform a headache evaluation and should be able to determine whether your medication should be changed. (more…)

« Previous Entries Next Entries »