Free Your Mind Blog

Hello, All,
I just heard about a new study that would really benefit from the input of people with epilepsy and their families. Here are the details:

The University of Michigan Center for Managing Chronic Disease and the group Advocacy for Patients with Chronic Illness, Inc., are using a National Institutes of Health grant to study the obstacles facing the chronically ill and their caregivers, interventions that do and do not help overcome those obstacles and how the NIH can help. If you are over 18 years of age and have a chronic illness or disorder, such as epilepsy, or are a caregiver to someone with epilepsy, you can provide much-needed input. Please visit http://chronicdisease.survey.sgizmo.com/ to take the survey and tell your health care story.

The survey is long–it will take about an hour to complete–but they will allow you to take breaks and return to it, so it is do-able. I think it could be a real benefit to the study to have our input.

I wanted to share our experiences with two pieces of equipment: the EMFIT seizure monitor and a new seizure mat available online.

The EMFIT is a very nice piece of equipment, and it was immediately apparent that this would be an excellent tool for many people: it will definitely alert to any tonic-clonic activity, and will certainly detect if someone has left a bed (if the settings are properly configured). I strongly encourage any family who struggles with any of these issues to try the EMFIT; the lovely people there (particularly Christine Ocean) will work out a very reasonable payment plan and trial periods that make it easy to give this system a try.

Because my daughter has spasms and clonic seizures, the system did not work for us; the parameters for detecting movement simply couldn’t catch the very tiny movements she made, or the loss of tone that marks her most serious seizure. Christine has indicated that the company is working on ways to address this seizure type, but it is still in the works.

We HAVE had great success with another product–a Safety Place Mat from SeizureSupport.com (  http://www.seizuresupport.com/products.htm ). Here is what they say about the need for this product:

Millions are affected by seizures. Head injuries, epilepsy, autism, cerebral palsy and unfortunately many more situations have a major and often uncontrollable symptom of seizures. If you’re reading this then you probably already know seizures can happen at any second with no warning.
Like many people living with seizures for whatever reason, tables and desk corners cause many injuries to the head and face. Often time these injuries require medical attention and compound the situation. Unfortunately, many injuries occur while…

in the physician’s office,
at the hospital,
in our schools,
in our work place,
sitting at the dinner table,
sitting at a desk,
where children do their homework,
sitting at the computer and even….
while sitting in a wheel chair!

Many people not affected by seizure syndrome may not understand the damage seizures can cause to a patient even while sitting down but the stitches and scars don’t lie!
In some situations physicians many times will prescribe head guards but unfortunately these very often do not offer protection for areas of the forehead, face and chin.

What they offer as a solution is a “safety place mat” to put on a hard surface to protect a person from injury in the event of a seizure. The mat is made from very sturdy but soft and flexible material; it has a nice bit lip that fits over the corner of a table (those corners are the most dangerous!); and it comes in bright colors. Best of all, it’s really affordable: about $60 with regular UPS shipping.

We have been using one for Josie all summer and have been so pleased–it protects her, and it allows us to relax when we are out at restaurants or friends’ houses, where she can’t sit in her Wombat chair. (We also use a special tomato brand booster seat to adapt regular dining chairs). I am ordering one for her to have at school, as well.

Hello!
Thanks, Karen & Justin, for your comments. Karen, I’m interested to hear what you have experienced with the device you suggest, above. And Justin, the jury is still out. I am about to adjust the frequency of detection in the Emfit. Josie has, since we started about a month ago, had only two seizures while in bed—neither of them the really difficult one that she usually has in sleep; under the Murphy’s Law of Seizures, they have  morphed a bit, and she is currently having them from a waking state, which is better for intervention purposes, but not giving us “data” about the device. The two seizures that she did have, however, begin with a very similar posture–a tonic “pike” movement that lasts about 20-30 seconds, and that does involve some very tiny movement just from the tensing of the muscles, but does not involve shaking in a classic sense.  The cluster of spasms that followed was not detectable–the spasms simply come too far apart to be recognized as seizure movement.

Nonetheless, we were disappointed that the monitor did not detect these, as it suggests it would not detect the other seizure, too. However, we are willing to give it a full trial, so will adjust to one of the two other preset options. If that doesn’t bear fruit, we will try the third. I promise to give an update at each stage.

What I can tell you is that the monitor will react to sustained movements that are more pronounced. Josie has “false alarmed” the device a number of times when stimming (she likes to shake her fist rythmically), and this motion certainly mimics a more typical tonic-clonic seizure. I think that the device is very promising for many people with epilepsy.

More soon!

One of the most difficult aspects of caring for child with epilepsy is the nighttime seizure. As many parents of kids with intractable epilepsy will tell you, these are terrifying, for they strike when we are least likely to be able to do anything about it. Indeed, some parents are so frightened that they sleep with the child rather than taking the risk of missing the seizure. (The fact that caregivers experience serious sleep deprivation as a consequence of these realities is a subject for another day.)

Unlike children who always seize at night, my daughter only experiences nighttime events about once a week, and these usually occur late in the morning, around 4 A.M. They happen to be the most difficult of the seizures she has, requiring intervention with Diastat (valium gel delivered rectally to interrupt a seizure), but we were pretty good at waking up when they happened because her breathing would become very raspy and loud enough to be heard on baby monitor. Recently, though, she had her tonsils and adenoids removed to treat mild apnea (a measure that we hoped would improve seizure control by improving sleep). And the surgery has been very beneficial—she sleeps very quietly and easily now. BUT, as we quickly discovered, the improvement in her airway means that when she has this seizure while sleeping, SHE IS QUIET. No more raspy breathing to wake us up over the monitor. One morning I came in to find her in the seizure and I had no idea how long it had been going. We were able to stop it, but she was absolutely exhausted all day. This was new, for she usually snaps back after sleeping off the Diastat, and led me to think that the seizure had been much longer than we would have allowed had we known it was happening.

Doctors hold out very little hope for the parent in this predicament. As yet, there are no FDA-approved seizure monitors on the market, and though some people have been able to use assistance dogs to alert when a child seizes, this is not an easy option for many families. My first instinct was to try to get a pulse oximeter from a Home Health Agency, thinking that the seizure probably causes a significant change in respiration or heart rate (she’s never had one of these while doing an EEG, of course!) and would thus alert us. But our insurance company will only cover the cost of such a device if the patient has a pulmonary diagnosis, and the monthly fee without insurance is $500.00.

So, we turned to a fairly new device, the Emfit movement monitor, made in Finland. It is not FDA approved, but is used in Europe and has one lone American distributor in Texas. They offer a rental plan ($1.50/day); this rental fee can be applied to the purchase price of $600, and they do have payment plans. The very helpful Christine Ocean manages the U. S. distribution of the device, and says that the response from parents has been overwhelmingly positive.

My major concern about this device is that it detects “micromovements,” and the seizure in question is pretty quiet—not at all the tonic-clonic movement that would be most likely to register. Still, we ordered it, and it came last week. It was very easy to install—it lies underneath the mattress and is connected to the monitoring device which sounds an alarm when movements of a pre-set frequency continue unabated for a pre-set amount of time (there are a few options that one can choose from).

Of course, as always with the Murphy’s Law of Seizures, our daughter hasn’t had a seizure in bed since we got the thing! But we will be patient. Since the seizure we worry about is very dependably coming every 7 to 8 days, I am planning to sleep in her room on the night in question to see if the monitor will register the event. I’ll report back when I know more.

But I am once again struck by the absurdity of the situation: we can send astronauts to live in space for months at a time, and program a robot to walk on Mars, but we can’t create a monitor that reliably detects seizures? The need for such a device is real—obviously it would be a great thing for protecting children and adults who suffer from seizures. But it would also allow caregivers to remain vigilant while at the same time maintaining as close to normal sleep routine for themselves as possible. And we all know how critical sleep is to maintaining health and well-being, especially for people living with chronic stress, such as that caused by parenting a child with uncontrolled seizures. I really hope that the Emfit device is the answer to this, and that the FDA and doctors can begin to take the problem to heart.

Today brings with it the inaugural issue of Epilepsy: Insights and Strategies, an online journal from The Epilepsy Therapy Project.

As the editor-in-chief of the journal, Robert S. Fisher, M.D., Ph.D., explains, this is a “unique, new online publication” because it is written by people who have epilepsy and their caregivers, not by the medical community, and is focused on helping people “navigate the challenges of living with epilepsy.”

I’ve just read the issue, and find it very interesting and full of material relevant to the full range of issues experienced by  people with epilepsy and their families. Here’s a link to the journal: www.epilepsy.com/epilepsy/journal/issue1. Check it out!

I recently learned of this scholarship program in the pages of Exceptional Parent. The scholarships are offered by UCB, Inc., a biopharma company that is developing treatments for a range of severe disorders, including epilepsy, and can be used by both people with epilepsy and members of their family. The deadline is April 10, 2009. Here is the description of the program from UCB:

“The purpose of this scholarship program is to provide financial support for the education of people living with epilepsy, including patients, family members, and caregivers. UCB, Inc. seeks to recognize the personal achievements of those people living with epilepsy. The award is a one-time scholarship in the amount of $5000. Twenty scholarships will be awarded to people living with epilepsy, and 10 scholarships will be awarded to family members or caregivers of people living with epilepsy, for use toward tuition at a United States-based center for higher learning (trade school, associate’s, bachelor’s, master’s degree, etc).”

To apply online, go to http://www.ucbepilepsyscholarship.com/ .

On January 20, 2009—in the midst of the Congressional luncheon in honor of President Barack Obama’s inauguration—Senator Ted Kennedy had a seizure and was taken to the hospital for treatment. The witnesses to the event were described by reporters as “frightened,” “confused,” and “disturbed” by the event, and most appeared not to know what to do to help. To an extent, it is normal to feel paralyzed in the face of any medical emergency, but the response to Senator Kennedy’s collapse also highlights an important public health issue, both for those living with epilepsy (who number over 3 million in the United States) and those who may have only one seizure in a lifetime. Our awareness of seizure first aid is woefully limited, a deficit that needlessly heightens the risks victims face and the fear that onlookers experience.

Compare, for instance, our general understanding of two other, common medical crises: choking and heart attack. Both are situations to which the public has been repeatedly instructed to respond in clear-cut ways: Five Blows to the Back then the Heimlich maneuver for choking and Cardio-Pulmonary Resuscitation (CPR) for instances of heart failure or failure to breathe. Both interventions are publicized through posters in many public spaces; in some cities and states, laws mandate such public notices. In the case of CPR and choking first aid, opportunities for instruction are available to the public, usually at very low cost.

What to do in the face of a seizure is less well understood, in part because seizures remain a mystery to most people, and, for many, a source of fear and even disgust. When my daughter was diagnosed with seizures as an infant, my mother confided to me that her distress over the diagnosis was shaped, in part, by her experience as a child, witnessing a classmate have a tonic-clonic (formerly called grand mal) seizure. The total loss of control and consequent vulnerability, the violence of the event (the classmate’s seizure involved rapid shaking or “convulsions”), and the seeming impossibility of stopping the event, was terrifying. It is understandable why such fears exist. It makes little sense, however, not to do more to ease those fears.

A seizure can strike at any time, and it can happen to anyone. It is a biological medical event and not a danger to others. People having seizures require assistance, and they deserve dignity and protection in the midst of their vulnerability. It is our shared responsibility to learn how to respond with calmness, compassion, and efficiency. Numerous epilepsy groups, including the American Epilepsy Outreach Foundation, are striving to dramatically increase public awareness about how to care for a seizure victim, advocating that communities post response protocols in schools, libraries, and other public spaces. The goal is, first and foremost, to encourage the public’s rapid response to what is a serious, but only rarely, life-threatening situation. But it will also, we hope, begin to familiarize people with seizures and diminish fear over these events.

Seizure-Response Protocols:

Generally, the rules of thumb for seizure-care are “the 4 C’s”: Calm, Clear, Comfort, and Call. Maintain a calm frame of mind, clear the area of anything that may injure the person having the seizure, comfort the person, and call 911 if the seizure lasts more than 5 minutes or is followed immediately by another seizure, or if the person is injured, having trouble breathing, pregnant, or having a seizure for the first time.

What follows are more specific descriptions of what to expect and what to do in the event of a seizure:

Convulsive Seizure

Also known as a tonic-clonic seizure, formerly referred to as a grand mal seizure.

At the start of the seizure the person may cry out, then usually stiffens and falls. His or her arms and legs may jerk or twitch. The person will have no awareness of you or what is happening. Seizures generally last a few minutes, but can sometimes go on for much longer. During the seizure the person may become very pale.

DO:
* Gently lay the person on their side. Make the person comfortable and put something soft under his or her head if you can.
* Clear a space around the person, moving objects away that might be harmful. Only move the person if he or she is in a dangerous place like by a fire, on the road or in water.
* Pay attention to the length of the seizure; most convulsions last no longer than 2-3 minutes. If the seizure continues longer than 5 minutes, call 911.
* If the person is injured, pregnant, or it is suspected that this is a first time seizure, call 911.
* If there are other people around, explain what you are doing, reassure them if necessary and keep them away from the person having the seizure.
* Loosen any tight neckwear and remove eyewear and high heel shoes if necessary.
* If possible while keeping an eye on the person, check for medical bracelet or other personal information in a bag that may indicate protocols for emergencies.

DO NOT:
* Do not put anything into the person’s mouth; it is impossible for a person to
swallow his or her tongue.
* Do not try to hold the person down.
* Do not try to wake the person up; he or she will come to in time.
* Do not give the person anything to drink or eat until you are sure he or she is fully awake.

At the End of a Seizure:
* Convulsing will stop, the person usually takes a deep breath, coloration should return to normal, awareness will slowly return. The person is often confused and disoriented. He or she may well be wet or soiled, and may find it impossible not to fall asleep, for a seizure can be exhausting.
* Talk to the person quietly, explain what happened and where he or she is.
* Until recovered, the person should continue to lie on his or her side. There is a slight chance that the person may vomit after the seizure, before he or she is fully recovered. Keep the head turned to prevent the inhalation or swallowing of vomit.
* Stay with the person until you are certain that he or she is okay.

When to Call an Ambulance:
If one seizure runs into another, or if the person has not woken up after five minutes, is having trouble breathing, is injured, is pregnant, or it is suspected that this is a first-time seizure, call 911.

Non-Convulsive Seizure

During this type of seizure the person may just seem blank and will not be able to speak or answer questions normally. He or she may act in an odd way, chewing or smacking lips, saying odd unexpected things or fiddling with clothes or buttons. A person having a minor seizure may appear drunk, drugged, or disturbed, but minor seizures may come on suddenly and last only a short time (a few minutes).

DO:
* Gently protect the person from obvious dangers (like wandering into a busy road).
* Pay attention to the length of the seizure; if the seizure lasts more than 5 minutes, call 911.
* Keep other people away.
* Talk to the person quietly.
* Remember that the person may be dazed or confused once the seizure is over.
* Very rarely, the person may become agitated. If so, do not obstruct the person. Instead, wait nearby and observe closely, intervening only if necessary.
* Stay with the person until you are sure he or she can get home. At the end of a minor attack it is not unusual for a person to have a major seizure, so it is important that the person be accompanied by someone else until in a safe place.

DO NOT:
* Do not try to stop the attack or aggressively restrain the person.

It is a great pleasure to be a part of the American Epilepsy Outreach Foundation’s efforts to “change the face of epilepsy.” This disorder has been a part of our family’s life since my daughter (now five) began having seizures at the age of three months. In the coming months, I hope to contribute to AEOF’s mission to offer support, encouragement, and information to people living with epilepsy. By focusing on significant news about seizure disorders, upcoming opportunities for activism and community engagement, and the particular challenges the disorder poses for daily life, the blog will (I hope) raise topics of interest and relevance to the community. I welcome your thoughts and ideas, so please be in touch via the “comments” field at the end of each post.