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A Personal Story

Living with someone who has Epilepsy

Living with someone who has Epilepsy - We are all Victims to this Condition

Every person directly involved by this disease, becomes an enslaved victim to it's incapacitating state that it forces us to live by.

I am a mother of a child that has has suffered the wrath of this disease since he was only 7-8 weeks old. The long-term effects on the family and friends are heart-wrenching and traumatic. We have to watch our loved one helplessly as they suffer the outrageous disease effects.

Some may feel, "Out of sight, out of mind," but a mother's love, doesn't have that option. I feel that some of our close family members have that exact attitude. You don't have to face the problem, if you can't see it in front of you. But where does that leave the person suffering from this disease? Lost, loneliness, abandonment and unloved. I love my children and could never do that to them, even if, they do it to each other.

So the best way to do handle the raising of a handicapped child, is to raise them as if they have no handicap at all. They just need to know their functioning limitations and abilities. If you treat someone as handicapped, they become handicapped.

All challenges in life, as a family, we work together as a team; facing all obstacles.

There is much to go through when discovering, dealing with and trying to improve the quality of life with Epilepsy. There is the process, yes it's a process, of diagnosis, medications, tests, hospitalizations and the list goes on.

Where are you when a loved one needs you?

The Beginnings of an Epileptic Life

What is a Seizure?

As a young mom, only 19 years of age, giving birth to my second child was a blessing. I had my daughter and was about to deliver my son. The perfect dream team family, in numbers, anyways.

My step-mother-in-law took me into the hospital because dad was not to be found. She finally found him and he called me at the hospital. He said he was too busy painting a sign to come to the hospital. Meanwhile, he was making jokes of having beers with our friends while working. Grandma Shirley got too tired, she was getting week and needed rest, and she went home to rest. She slept through the birth and I was to deliver with a group of people in white coats.

After signing a lot of papers to deliver with an epidural, I was informed that there was another delivery going on and the only anesthetic team working with her for her first birthing. I was erratic, to say the least.

It was difficult birthing my son. The Doctor, unusually, leaned both forearms on the top of my stomach to help push him out. My episiotomy they gave me, then, ripped open extensively. It was so painful.

Finally, I saw my son. He was a purple-blue color. It frightened me. But they said he was alright.

His color returned. They said they had to put him under the ultra-violet lights for the maximum amount of time because he had severe jaundice. That worked to bring his levels within range. Then, they gave him sugar water for the first 24 hours of birth to bring his sugar level to normal. They said I must of had low sugar during pregnancy. But it all worked out well.

I birthed an 8 lb. 4 oz. beautiful son. He went home with me approximately 9 days later.

My son was almost 2 months old, about 7-8 weeks to be more exact. My mom came over to spend the night. My son's father thought this would be great for her to be at home with the kids while they were sleeping so I could go out to drive the car he got me as a belated birthday present. It was approximately 2-4 am. The perfect time.

It was cold, slippery and icy outside, so we only stayed in the neighborhood for a short time and returned home. My mom was on the couch laying down. As we walked in, I asked her how the kids were? She said they were fine that last time she checked on them. Dad decided to go check on them real quick before we got settled in for the night.

He came back downstairs very quickly with our baby boy. He just held him out in his arms and said, "What is wrong with him?" Dad's face was white and pale. My mom said, "Maybe he is cold." She snuggled him against her. I said, "No, something's wrong." His head was off to one side, along with his eyes. He was frighteningly shivering. We decided to rush him to the hospital at that moment.

On the way to the hospital, he stopped breathing on me. I blew in his face to keep in going til we got there. I was so afraid. My son's life was literally in my hands at that moment. As we walked into the Children's hospital Emergency Room, it was almost like they knew right away. They took him out of my arms and took him into Trauma 1 Room. Now the waiting game....

When they came out to talk to us, they said I could see him, but they had to prepare me first. If I couldn't handle it, I was to tell them and then I could not see him. They explained that he was hooked up to a lot of equipment with wires and tubes. He was a breathing machine to breath for him. I didn't care. I wanted to be with my son. They said that we should call any family in because the situation was not good. I was unable to speak, trying to inhale the screaming through the crying, and the father had to call while I went in to see him.

I went in to the room to see him. It hurt to see him like that, but I was happy to be by my baby. I stayed with him from that moment on, when they would let me.

They stabilized him enough to move him to the Intensive Care Unit. Dad went home. They let me see him for five minutes, every three hours. I didn't miss a moment.

The second night, his condition was severe. They could not stop him from seizing repeatedly. They informed me that my baby son was not gonna make it through the night. They said I could hold him until he passed on. I held him close and talked to him softly.

The next morning the Doctor came in and was surprised to see me still holding my son. He said the mother-son bond stimulation probably kept him alive.

He ended up several days later in a regular room. They ran tests and sent us home about a week later. His seizures, were said, to be caused by unknown causes.
That was our first Epileptic experience together. We just didn't know that at the time.

The hard part of the situation was that he was not diagnosed at that time to be epileptic. They assumed his seizures were an onset of something else. They drilled us like we were bad parents and had done something knowingly or unknowingly to cause this situation. I have never felt so attacked in my life.

Epilepsy: The Growing Years

Mothering a Child; Discovering Epilepsy

As my son grew, the progression of the Epilepsy signs started to show through.

When he was about 18 months old, I had him out in the yard. He was running and playing in the grass with his big sister. He ran to one edge of the yard and suddenly stopped. I ran over to him and leaned down. I said, "Are you o.k.?" He looked at me, his eyes rolled back into his head, he stiffened and fell straight backwards. His sister came running and crying. She didn't understand what was going on.

He seemed to not be able to respond to me. I picked him up. We ran to the car and went to the hospital. They looked him over and said he was fine. They said they couldn't explain what had happened and just sent us home.

Another two years went by, then things started happening. He started having multiple seizures. By the time he was 4 years of age, he was having them weekly, on average. This is when his anti-social behaviors started.

They were giving him Phenobarbital liquid at this time. At the age of 7, we found out that he had side effects from the medication. He was already a hyper child; you add Phenobarbital and you got an out of control insomniatic child. This was hard for a mom that was having more babies with no sleep and a relationship that was falling apart.

I was suffering throughout the years with depression. This is a mother's nightmare. How can you take care of the kids, if you can't take care of yourself.

My son was switched to Tegretol. This seemed to help for a while. I was able to get some sleep.

It seemed that he was seizure-sensative to many of the natural elements that we take for granite. He could go into a seizure if direct sun light was on him, too hot, too cold, getting upset, anger, excitement; just about any extreme emotion or feeling. It is hard for a mother to even discipline a child, but we have to.

He seemed to improve as he grew before he was a teenager, then, it started happening again. Seizures for no apparent reason. I thought he may grow out of them, but puberty proved us wrong.

It seemed like nobody cared in the medical field about the reason anymore, but more about medicating him. Things were not explained to me as they should have been. I talked to many people. I looked on the internet. I searched the libraries for information. But most of all, my son taught me.

As parents, we should listen to what our children have to say. Know how your child is feeling before, during and after the effects of seizures. Believe it or not, it helps in determining a lot about your child to protect them and look at treatment options in the future.

Epilepsy is Socially Unacceptable

Growing Years: Anti-Social Behaviors

Through the growing years of my son's life, I watched him draw into himself. As a parent, this is difficult to accept.

It is also important that our educators are educated about Epilepsy.

My son's also was diagnosed as having ADHD. I always wondered if this wasn't due to the long-term effects of the Pheneobarbitol medication he took when he was younger. He was placed in a special class for children that had learning and health disabilities. I was assured that he would be in good hands at school. Until............................

One day he came home from school. He told me that he had a seizure in class. He said when he became aware of his surroundings after the seizure, his teacher was over top of him yelling. She was telling him to sit up in his seat straight and stop acting stupid. My son just had a full blown seizure in that desk.

As an angry parent, I went to the school yelling back at them. Yes, I should have handled differently, but my son could have been injured and a teacher was belittling him in front of his classmates. The teacher did apologize. She was then educated herself and the rest of the school year went smoothly.

My son had a couple of seizures at school. This was hard on him to face his fellow students the next day following.

Kids and parents were understandably afraid to be around my son. He never spent the night anywhere. This was hard, especially, because his younger brother was a social butterfly.

I came up with starting to let kids stay the night at our house. I would invite the new kid in school to stay the night with him. While the each kid was there, they couldn't help but learn about my son's disease. They became comfortable around him and him around them as well.

His social life started in Middle School. I watched him blossom with his personality through high school. It felt so good to watch him become an adult.

Sometimes we have to take the initiative with our children in these situations. It doesn't mean always sticking our noses in their business, it does mean we shoot in the dark and try to step in when we think we are needed. This time it worked.

Additionally, my son's seizures caused a lot of problems with his memory and other things. He had such difficulty at times in school. It seemed every time he had a seizure, it would set him back educationally.

Then out of frustration, he would act out. I have noticed that parents are blamed a lot when children act out. Can't it mean that maybe this child is going through some stuff that others do not understand.

Everything has become a label these days. It is just a blame game. If we don't know for sure who to blame, we will give it a name. Or, heck with it, we can do both.

I was told by a Middle School Counselor that because of my son's problems, I should take alternate steps for him. She said that her son was 18 at the time and he was living in an independent living situation to teach troubled handicapped youth basic survival skills to live on their own. She said that her son would be out in maybe a year. She said she would help me with the paperwork. All I had to do was to sign my parental rights over to them (the state). She said my son would never be able to make it through school, or life in general, successfully.

I told her a few choice words ( I needed anger management at the time) and told her that even though she gave up on her child, I am never giving up on mine.

3 1/2 years later. I smiled as my son walked across the stage to graduate. A very proud day for a parent and an accomplishment for a student.

Epilepsy Adult Life

Family of an Epileptic Adult

Being the mother of an Epileptic Adult is difficult at times. I am always worried that he is going to have a seizure while he is alone and would not be able to get help.

The stresses are immense. I know because it has already happened to us.

His seizures used to be pretty much under control with medication for a while. If his levels got low, he would seize. He was a hard learner, but he came to understand this to be true. When he was 20 years old, he got his own place. He liked his privacy and he likes it quiet around him. I think some of that lingering loner stuck with him to adulthood.

I took the initiative, again, and started sending his friends over to hang out with him. They would stay the night and let me know how he was doing.

I found out that he was having seizures and wasn't saying anything, He thought he could handle it on his own. I then got him a care giver to get him to appointments and be there when he showered and stuff for standby.

I then took a trip to Ohio, we were living in California, to see family (his sisters). I saw a couple of my grandchildren face-to-face for the first time. While I was gone, the caregiver was not doing their job. They outcast-ed and ignored him. They just wanted the paycheck.

The caregiver had rented their rear unit to him before I left out of town so I thought he would always have someone close by in case something happened. But that was not the case.

My son had such a bad seizure, he ended up with 1st, 2nd and 3rd degree burns. The leg burn was so bad and not taken care of that he gang-green infection was setting in.

I was outraged. I found out that my son couldn't take the way they were treating him and was on the streets. He would never tell me anything because he didn't want me to worry. He finally got another place to stay.

So I went back. I got a place and he moved in.

The medical care he needed was not available where we lived. He came back to Ohio, where most of the family lives, and is getting the best care we could ask for from anyone.

They are actually working with him to either stop the seizures or get them under control.

Now, we have been through, Dilantin, Carbotrol, Vimpat and Kepra XR.

He is on Kepra XR and Vimpat to date.

Thank you Dr. Koubessi at University Hospital in Cleveland, Ohio. They have the whole neurological team on my son's side. I really appreciate you all!

Left Temporal Lobe Surgery

Decision to Improve the Quality of Life

They are offering surgery for my son now. We are all so happy. He just wants the chance to live normally; seizure free.

This surgery on the front left temporal lobe has had a high success rate with patients. We want him to be one of those included in that statistical set of successful numbers.

My son has many kinds of seizures; He has they various types under Generalized and Partial Seizures.

My son is high-risk for SUDEP. You can look this up through a search engine. But it pretty much means that my son's life can be taken away by any one of his seizures. They have gotten quite severe. He may only have up to 10 years left at his current rate. Now, his seizures are getting worse. I am afraid for my son.

This surgery may be what keeps my family together for many years to come.

It not so simple though. There is many tests involved to assure that he is a proper candidate for this surgery. We thought that the last one was the final test, but the test did not go as well as expected. So now, they are doing a more invasive test.

It is a surgical procedure to narrow down the area of the brain to be taken out. According to the last test, if they were to go ahead and do in now before narrowing it down, my son would possibly lose his speech and most of his memory.

The idea is to only take what is necessary. We want the highest rate of success for him.

This is list of test so far (that I can think of) upto the newest one (to be performed within 2 weeks):

* Blood tests

* MRI

* EEG

* Digitizing tests

* Pet Scan

* Psychological tests

* This new surgical testing (Don't remember the name, but they drill 8-12 holes in the left temporal lobe area and insert wires to test. They send electrical currents to sections of each wire. Seizures will be triggered. This test takes 1-2 weeks in the hospital)

* Video Monitoring of seizures

* and others.

I apologize for my lack of memory and medical terminology.

You can look up the University Hospital Neurological Team. They include, to name a few; Hans Luders, MD, PhD, Mohamad Koubeissi, MD, Dr. Bailey, Selley and more.

I would recommend them to anyone.

Start a Support Group in Your Area

Note to Epileptic Patients & Families

We all know how difficult it is to live with this disease.

If there is not a support group in your area, start one yourself.

It is good to have the support of others who may understand your situation. It is a good place to share ideas, information and help to one another.

No matter what the age, it is always good to have support with each other in the community. How can we expect our loved ones to reach out for help, if we are not willing to do it ourselves.

Since I wrote this story (follow up)

After almost a month in the hospital, my son had surgery on May 23rd, 2012. I am happy to report that everything went well and it was successful. I will be writing the follow up story this week for you. Is there someone in your life that has a seizure disorder or is Epileptic? Let me know what is going on in your life. Let's share stories and information.