It’s a New Time

Since I have had some time on my hands and have had the opportunity to spend some time with my son, I have learned a little bit more about my son’s medical conditions.

My son has not had any seizures for over six months or longer. Up to now it has been difficult to tell because sometimes his non-epileptic seizures look like seizures. I am now pretty confident that the seizures he was having when he was younger are no longer happening. In those days his seizures always started with his eyes and head, and sometimes traveling on to other parts of his body.

Since I was going to be home with him full-time for awhile, I decided to slowly reduce his epilepsy medications. He was on depakote and tranxene. He has now been off both of these medications and has had no seizures. This is big for him. Eliminating these medications removed at least one ball and chain from around his neck.

He still has his VNS, which may be still providing some control over the seizures. We are approaching the time where we will need to change the battery in the VNS. He has had it since 2004 and it is about due for the battery to be dead. It will be a big decision to decide what to do. At times my son wants the VNS out. He doesn’t like the look of it in his chest and at times it will hurt him,which I suspect is from scar tissue. The last time he saw his neurologist he asked if it could be taken out. The doctor said we would talk about that when the time came.

My son also has this concern about having it in his body and that it prevents him from being “normal.” A year ago his someone made a stupid joke that he should be careful before the doctors turn him into a robot. Dumb joke. My son took it very seriously.

On the other hand, my son has mentioned that his VNS has always been with him. He is thirteen now. He questions whether to remove it because it is a part of who he is.

Decisions, decisions. We will see what happens next. It is wonderful having him off the medications. It will be interesting to see if there are improvements in his life as a result of getting away from the side affects of the medications. No more drowsiness. I wonderful how this will impact his learning. He is way behind in most of his classes. Is it possible that some of his learning disabilities were caused by his medications, or at least contributed to his learning difficulties? I guess we will see.

So now what’s next? The neurologist doesn’t know we did this. I am not sure what his reaction will be. I am also curious what my son’s epilepsy status will be labeled. Does he still have epilepsy? Is there a period of time when one is seizure free and one is no longer considered to have epilepsy?

This is a big change for us. When he was younger he was having cluster seizures twenty or more times a day. His seizures were sometimes triggered by bright lights. It had a big impact on all of our lives. And now, it appears to be over. I wonder for how long will I have my guard up? I am always watching, looking for that unusual eye blinking which indicated the start of a seizure. It’s an odd feeling. Waiting. Hoping nothing happens. Watching for any sign. I want to celebrate the moment, but am afraid to, in case it sneaks up on us again. Perhaps with more time this anxiety will go away. Lucky for my son he usually isn’t even thinking about it. Good for him. It s my job as his mom to carry that burden of concern. This way he can just live his life. I am so happy for him. We have plenty of time to celebrate.

Turning to technology for relief from seizures . . .

This is a follow-up to my blog called Taking control during a long-term EEG . . . .  Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described our experience with long-term video EEG’s and sometimes you need to follow your instincts.

As I mentioned in my previous post regarding epilepsy, we finally had captured my son’s seizures on a video EEG, and the epitologist determined that the seizures were coming from the left frontal part of the brain.  With this information, we hoped that it would guide the epitologist with what medications could be effectively used.  They also knew that the seizures started out as Simple Partial seizures but on occasion would change to a Complex Partial Seizure.

At the time I thought we had a big win, but then I found out that numerous anti-epileptic drugs were approved with indications for simple partial seizures, but no specific drug recommended.  You can imagine my disappointment.  We were back in the trial and error process with the medications.

For the next three years my son was prescribed numerous antiepileptic drugs.  There was this constant process of weaning him off one drug and slowly building up another.  Some of the drugs included:  Topomax, Lamictal, Keppra, and Tegretol.  The drugs were scary because of the potential side effects, which is the reason they are very careful about putting you on a medication.  Sometimes when we were choosing which medication to try next, the deciding factor was to choose the medication with the least dangerous possible side effect.

During that three years there was a nine month stretch of time that my son was on no medications.  It was my decision because none of the medications were working.  As I may have mentioned before, I really didn’t like using all of these medications.  Since the medications weren’t helping I decided we needed to take a break from them.  It was also a chance to see if the medications were actually causing some of the seizures.  Over that nine months nothing happened.  He continued to have seizures.  They were no worse or no better without medication.  After the nine months our neurologist made one more suggestion and we went back on a anti-epileptic seizure medication.

As you can guess this drug did not have any positive effect and my son’s epilepsy was classified as irretractable epilepsy, also called refactory epilepsy. Irretractable epilepsy is defined as having seizures that do not respond to medications. Thirty percent of people with epilepsy have these kinds of seizures.

At that point the neurologist suggested that we consider getting an implanted vagal nerve stimulator (VNS).  The VNS was approved by the FDA in 1997 in combination with seizure medication for partial epilepsy in adults and adolescents.  The Epilepsy Foundation provides the following information about the VNS:

Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.  It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.

The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.

Cyberonics was the manufacturer of the VNS that my son has implanted.  The following information is provided by Cyberonics:

The VNS is implanted via surgery.  The device is implanted under the skin on the left side of the chest.  A second incision is made on the neck where the wire from the stimulator is wound around the vagus nerve on the left side of the neck.  The brain is not involved in the surgery.

Picture provided by Cyperonics at http://us.cyberonics.com/en/vns-therapy/

The device is a flat, round battery, about the size of a silver dollar—that is, about an inch and a half (4 cm) across—and 10 to 13 millimeters thick.  Newer models may be somewhat smaller.

Picture provided by Cyperonics at http://us.cyberonics.com/en/vns-therapy/

The neurologist programs the strength and timing of the impulses according to each patient’s individual needs. The settings can be programmed and changed without entering the body, just by using a programming wand connected to a laptop computer.

For all patients, the device is programmed to go on for a certain period (for example, 7 seconds or 30 seconds) and then to go off for another period (for example, 14 seconds or 5 minutes). The device runs continuously, usually with 30 seconds of stimulation alternating with 5 minutes of no stimulation. The patient is usually not aware that it’s operating.

Holding a special magnet near the implanted device causes the device to become active outside of the programmed interval. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. Many patients without auras also experience improved seizure control, however.

The battery for the stimulator lasts approximately 5-10 years.

It was a big decision to go down this path.  I did a lot of research.  At the time it had been on the market seven years.  We were very anxious about the decision because we were putting a medical device inside my son’s body with no guarantees that it would work.  Our neurologist indicated my son was ideal for this because he was usually conscious when he had his seizures.  Before we made our finally decision we had an opportunity to meet with a person who already had a VNS.  This was really nice because we could hear her personal experience, see where the incisions were made, and  see how it operated.

As a result of meeting with her, she demonstrated how the VNS affected her voice when it went off.  The vagal nerve is located right by the voice box.  When it is activated it causes the voice box to vibrate if you are talking.  As you get used to it there is no sensation.  When we first got it slightly hurt, no more than a small sore throat.  As the body adjusted to it the sensation goes away.  Plus they slowly increase the current over time so that your body can acclimate to it.

They give you a magnet which you use to activate the device.  When you swipe the magnet across the device  it will activate the VNS but at a slightly higher rate than when it normally goes off every five minutes.  My son uses this if he has the sensation of seizure happening.

In our checkups the neurologist always does a check of the device.  He takes this device and just holds it over the VNS and the two devices talk to each other.  The neurologist can adjust setting and look at statistics about its usage.

Since my son had the VNS implanted he has not had any more tonic clonic seizures (formerly known as grand mal), and he no longer had these flutter seizures where they would rapidly start and stop.  Unfortunately, his most common seizure continued to happen.  These seizures were later determined to be myclonic seizures which consisted of a unsually tugging of the eye, and occasionally affecting other parts of his face and body.  These continued happening frequently, as much as five or six times a day.

My son now has had the implant for seven years, which is close to the time when the battery will need to be replaced.  We will decide if we will be replacing it.  There are times my son wishes he didn’t have it.  He doesn’t like the bump on his chest. Plus he can’t participate in any contact sports.  I suspect we will want them to turn if off and we will see what happens.  If he no longer has those seizures we may keep the VNS off or have it removed.

To Be Continued . . .

Diabetes and me . . .

Based on some of my earlier posts or tweets on Twitter, you may have surmised I have some personal connection to diabetes.  I revealed some information in an earlier post, Looking forward to the artificial pancreas .  So I thought I would take a moment to share some more information with you.

My grandfather, who is deceased now, had diabetes.  His perspective of diabetes was very different from how it is today.  In the 60’s insulin was the main treatment for diabetes and urine test strips had just been invented.  The single use syringe was introduced in 1961.  Prior to that diabetics had to use glass syringes, which had large needles and had to go through a  sterilization process each time it was used.  The first portable glucose meter was created in 1969.  The way my grandfather had to manage his diabetes is entirely different that how it is done today.

As a child I knew my grandfather had diabetes.  I also knew that he restricted his diet from sugar products or that is how it was perceived by me.  I don’t recall other dietary restrictions.  I know he was insulin dependant.  I don’t know how old he was when he was diagnosed, and I never saw any evidence of his diabetes.  No testing.  No shots.  They may have been happening; I just didn’t know anything about them.  I did know that at Thanksgiving my grandmother made him a sugar-free pumpkin pie.

My mother was diagnosed with diabetes in her late 30’s. She has type 2 diabetes.  She started her treatment with medication and dietary adjustments.  Later she was put on insulin.  She has always struggled with her diabetes.  Testing and taking insulin shots has been a normal part of her life. 

My father has type 1 diabetes.  He was diagnosed in his 60’s.  Initially they treated him as if he had type 2 diabetes.  At that time, type 1 diabetes was considered a disorder only for children.  After battling to control his blood sugar levels for a while, his doctor finally did a test and it was determined he had type 1 diabetes.  He was immediately put on insulin. 

As a side note, my parents had a dog who became diabetic, which was late in his life, and he was insulin dependant.  At one point my mother, my father and the dog all took injections of insulin.

So, with this type of family history I was waiting for the day when I would be diagnosed with diabetes.  Two years ago my doctor said I had pre-diabetes.  I was introduced to testing my blood and adjusting my diet.  Then in July of this year, I was diagnosed with type 2 diabetes.  Obviously, I am monitoring my blood, adjusting my diet, and taking metformin. 

Even though I knew it was coming, this diagnosis caused a big revelation for me.  I realized I needed to make some major changes in my life. Memories of my parents dealing with the disease flashed before me.  I also recollected the situation of one of my uncles with his diabetes.  Eventually, he had become partially blind and ended up on dialysis because his kidneys failed. 

More importantly, I thought about my son.  What if something happened to me and I was not able to help him?  He has numerous health issues including:  epilepsy, Tourette syndrome, an anxiety disorder, sensory integration syndrome, obsessive compulsive disorder, and non-epileptic seizures.  In addition to all of this he has learning disabilities.  His life is not easy, and I wanted to make sure I would be here to support him into his adulthood, if need be.

So I took my diagnosis very seriously.  I test my glucose levels religiously.  I also drastically changed my diet.  I started an exercise routine. As of now I have lost 35 pounds.  Hopefully I can keep this momentum up.

To be continued . . .

Stigma of epilepsy . . .

November is Epilepsy Awareness Month.

In 2002 I found our 3 ½ year old son having a convulsion and not breathing. Then we were off to the Emergency Room. This is how our struggle with Epilepsy began. And since then we have seen many neurologists, endured numerous neurological tests, been on multiple types of seizure medications, had surgery to implant the Vagal Nerve Stimulator device to prevent or reduce the intensity of his seizures.  And now my son still has seizures and is facing serious issues at school as a result of the seizures and the learning disabilities that go along with the disease. 

Unfortunately this is a common scenario for many parents. Epilepsy has little warning. Suddenly a perfectly healthy child is stricken with seizures.  My wish is for a national effort to spread understanding and support for those with this heartbreaking disease and their families.  Before you presume that Epilepsy has not touched your life please consider this:

• As many as 1 in 100 people have a form of Epilepsy
• Epilepsy is a neurological disorder
• Epilepsy effects all ages, races, and countries equally
• Epilepsy can be caused by strokes, brain trauma, brain tumors or scarring, and infections like meningitis or encephalitis.
• But more often there will be no clear cause or reason for the patient to be afflicted.

Most people are afraid to talk about their disease due to the stigma of epilepsy.  When most think of a seizure they picture a “Grand Mal” type event. The terminology grand mal is not even used any more.  Often a person with Epilepsy will suffer from other types of seizures. They can range from brief absence seizues which are moments of “blanking out.” Or they could have drop seizures that cause a person to fall violently to the ground. Or they could have myoclonic seizures which are quick muscle jerks.

In most cases epilepsy can be controlled with appropriate medications. When medications fail some will have to resort to surgery. Specially designed diets have also been successful in treating difficult cases.

 Despite how advanced the world has become the stigma of epilepsy still exists. People still have old world ideas about epilepsy. It is my hope that when you think of epilepsy you can imagine the person, not the disease. Let’s change the face of epilepsy.  My son is a  child who struggles every day to overcome a disease that can rob him of his basic ability to learn and thrive. 

Please visit http://epilepsyfoundation.org/ for more information and provide support.

Related Articles

• Obama Adviser Puts Up Fight Against Epilepsy (foxnews.com)
• CureEpilepsy.org

November is epilepsy awareness month . . .

November is National Epilepsy Awareness Month.  The Epilepsy Foundation is launching a nationwide campaign to make 1 million Americans seizure smart this November.  We need you to help us spread the word!

The campaign is called “Get Seizure Smart.”  More information can be found at http://www.epilepsyfoundation.org/neam/ Take the quiz and see how much you know about epilepsy

For those of you that have followed me either on Twitter or Facebook, this is old news.  For those of you that are new to me Epilepsy is a very important topic in my life.  My son, J.O., has epilepsy, along with a number of other health issues.  He was diagnosed when he was 3 1/2.  It was a terrifying event for both of us.  For the next 4 years we struggled to get any type of  relief from the seizures, which had been occurring multiple time every day.  We saw many specialists and went to multiple clinics for evaluation, including Children’s Hospital in Columbus, OH, Cleveland Clinic, OH, Mayo Clinic, MN and Minnesota Epilepsy Center which is in St. Paul.  The neurologists tried many different antiepileptic drugs for the purpose of gain some control of the seizures.  The drugs were scary and had major side effects.  In 2004 J.O. had surgery to implant a Vagal Nerve Stimulator (VNS) for the purpose of either stopping seizures or lessening their severity.  After a few months it was successful in eliminating his most severe seizures.  Yet he was still having myclonic seizures.  Finally our neurologist found a combination of drugs that almost eliminated the seizures.  Occasionally J.O. will have one, but now the instances are one seizure for every two weeks or so.  What an improvement?

So that is where my passion comes from regarding epilepsy.  For the next month I will share some facts about epilepsy and you can be one of the Americans that are seizure smart.

More to come . . .