Maegan has had seizures since she was 2 years old. Over the past 34 years, she had tried countless medications as well as ketogenic diet and surgery.
Maegan struggles with body temperature regulation. Whenever it’s too hot, her seizures became even harder to control. Her parents tried everything they could think of to keep her cool, but what Maegan really needs is a proper cooling pad. They need something better than bags of ice that often end up melting on her body, causing her to be wet.
A word from Maegan’s father:
I’m Kyle Turner and this is our daughter Maegan. At the age of two Maegan had her first epileptic seizure. Maegan is now thirty six years old. We were able to control her seizures with medications until the age of thirteen. Since that time Maegan has been in ICU more than eight hundred nights with seizures we cannot control.
Maegan’s main problem is her body temperature. If her temp goes up even a very small amount, it triggers full blown, tonic clonic seizures. If we put her in a hot car in the summer she will have seizures. If we use a hot hair dryer she will have seizures. If the water in the shower is too warm she will have seizures. Even the ambient heat that builds up between her back and her chair causes Maegan to have seizures. We try to control her temp with fans and ice packs which are effective to a point, but what she really needs is a medical grade cooling mattress pad. We’ve used the smaller home units with success but they aren’t built to operate the number of hours we need and they breakdown over time.
Thank you for considering to help our daughter Maegan. These medical devices are quite expensive but will be a tremendous help in our efforts to control her seizures.
WHAT IS EPILEPSY?
Epilepsy is a chronic disorder, the hallmark of which is recurrent, unprovoked seizures. A person is diagnosed with epilepsy if they have two unprovoked seizures (or one unprovoked seizure with the likelihood of more) that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar.
The seizures in epilepsy may be related to a brain injury or a family tendency, but often the cause is completely unknown. The word “epilepsy” does not indicate anything about the cause of the person’s seizures or their severity.
Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well. Sometimes EEG (electroencephalogram) testing, clinical history, family history, and outlook are similar among a group of people with epilepsy. In these situations, their condition can be defined as a specific epilepsy syndrome.
WHEN TO CONTACT A PHYSICIAN
If you or a loved one has a seizure, it is imperative that you get medical help immediately. Although the symptoms of a seizure may affect any part of the body, the electrical events that produce the symptoms occur in the brain. The location of that event, how it spreads, how much of the brain is affected, and how long it lasts all have profound effects. These factors determine the character of a seizure and its impact on the individual.
If you have reoccuring seizures, our physicians recommend that you see an Epilepsy trained neurologist (Epileptologist). AT NCD, we have an entire team of physicians trained specifically for Epilepsy & seizure control. We also have a sEMU (subacute Epilepsy monitoring unit) where we perform EEGs. Call us today to set up an appointment with your specialist.
CLINICAL TRIALS FOR EPILEPSY
NCD offers a variety of clinical trials that are open for enrollment to participants who want to volunteer for research studies. At the current time there are no available Epilepsy studies, however we encourage you to keep following up with your physician as new studies arrise often.
At NCD, our physicians’ commitment to their patients involves providing medical research in our clinic that helps people achieve a better quality of life. We are exploring next-generation innovations to improve treatment options available to our patients.
If you are interested in hearing more about our clinical trials, please contact your physician or reach out to our clinical research department at: 214-750-9977 Option 5 or Visit Our Website Here!
YOU ARE NOT ALONE. This is a statement that often is easier said than heard, especially in the world of Epilepsy. We understand the physical, emotional and financial toll it takes on caregivers.
Being a caregiver can be rewarding. Rather you are a parent, spouse, loved one or respite care, you may feel a supernatural fulfillment from helping someone else. But often times, caregiving can be stressful and even overwhelming. This can be especially true when caring for someone with Epilepsy. Your care giving is an amazing GIFT to the Epilepsy community! And your mental, physical and emotional health is just as important as the person you are caring for.
Build your support community! Here are some great resources to help you get started.