Epilepsy Awareness Month: Interview with Eileen (Will’s Mom)

“Facebook friend.”  

That phrase diminishes the absolutely real friendships and connections people make using social media so I won’t use it here. I met Eileen through a friend of a friend and we have followed each other’s caregiving journey for a few years now.

Eileen and her son, Will

We may not have met in person but she has touched my heart with the stories of her kindhearted, goofy and genuinely sweet son who just happens to also have seizures.

Meeting face-to-face does not define a friendship and seizures do not define a person. I think you will be just as convinced of this after reading about Eileen and her son, Will.

Robert's Sister: Tell us about the person you are caring for.

I am a caregiver for my son, Will Orsini. Will was born in South Korea and joined our family when he was 5 months old. He is now 23 years old and has been having seizures since he was 6. At that time, he had been developing normally and showed no signs of physical or developmental challenges.

Robert's Sister: When was Will first diagnosed? Tell us about the process of getting the diagnosis.

Will was diagnosed in 1999. He had been sharing with us that he was seeing pictures. We thought that he was daydreaming, but then then started wondering if it was a psychological issue. One day he tripped because he said the picture came into his brain and he couldn't see. At that point we felt we might be dealing with something physical. Shortly after that incident, Will started screaming, saying that there was a scary picture in his brain, followed by him losing his sight (no picture) for a couple of minutes. He was rushed to his pediatrician, who arranged emergency appointments with a pediatric ophthalmologist and neurologist. The ophthalmologist did not think it was a visual issue. The neurologist asked us to get an EEG and MRI. Ten days later, the neurologist called us to inform us that Will was having seizures in the occipital lobe, and he was started on seizure medication.

Robert's Sister: How did you feel when Will was first diagnosed with epilepsy?

We were frightened, worried, lost and very naive. The idea of our son having a chronic illness was devastating, and yet we were innocent enough to believe that lots of people have seizures and there's medication out there so maybe everything will be ok.

Our daughter was 12 at the time and rarely had had to see the doctor even for normal childhood maladies, so regular doctor visits were unchartered territory. The pediatric neurologist we initially saw was not very communicative and discouraged any type of self-educating. He never shared with us how bad Will's EEG was, but thankfully was worried enough about it to refer us to a colleague. We ended up transferring Will to his care for one year. When the results of a sleep-deprived EEG ordered by the newer doctor landed Will in the ER because the doctor was out of town and the doctor covered for him panicked, we knew that there had to be a better place for Will. We made an appointment at the Children's Hospital of Philadelphia in 2000, and never looked back. 

Robert's Sister: Did your family treat Will differently because he had epilepsy? If so, how?

In our immediate family, as Will was only 6, he was already supervised very closely, but that stepped up a bit as we were recording each seizure. In our extended family, Will already was treated differently, in a very good way, because he was the youngest grandchild by 6 years. Everyone was in shock that our boy was sick, but like me, were scared yet cautiously optimistic.

Robert's Sister: Did the kids at school treat Will differently because he had epilepsy?

As Will's seizures were on the quiet side, and he was only 6, there was never a discussion with classmates. As he progressively got worse, requiring 1-on-1 supervision as well as being in a special education contained classroom, I'm sure he was perceived as different, but I don't believe he was aware. The fact that Will needed all this extra support/supervision should have been devastating, but at that point, we were relieved that he was being so closely supervised not only for his physical safety but being protected from possible peer unkindness. 

Robert's Sister: What treatments did Will try? What worked? What didn't work?

In the 17 years that Will has been seizing, I think it is safe to say that he has tried pretty much everything out there. Some were poison to him, i.e., phenobarbital, bromides, Zonegran, Lyrica, and Keppra to name a few. Some agreed with him, but were ineffective. Some agree with him, help control seizures, but lose their efficacy after a while.

There are meds that he has gone on and off and then back on over the years with mixed success. These would include Depakote, Lamictal, Tranxene, Topamax, and Felbatol. Will was also evaluated for a resection, but 5 days into the Phase 2 monitoring, it was determined that his seizures were firing off all over his brain, so taking the chance to resect one portion would likely present a larger chance of damage/complications than providing seizure relief.

Will has also been on the Ketogenic Diet twice. The first time, when he was 10/11, for 18 months. He was an exemplary participant, and was actually seizure-free, while on no meds, for 6 weeks. However, the seizures started kicking in again, and we were also having difficulties maintaining his weight. The second time was when he was in his mid-teens. He was on a more relaxed version of the diet, also medically supervised, but it was not effective in helping to control Will's seizures.

Lastly, Will has had a VNS since 2001. Initially, we were unsure if it was helping out at all as Will was, as he is now, seizing multiple times daily. However, when a sharp increase in seizures coincided with a dead battery reading on his VNS, we felt it was proof that it was an effective part of Will's seizure arsenal. Will just had his 4th VNS implanted in June 2016.

Robert's Sister: Do you think the medications affect how Will feels and behaves?

Most definitely. Overall, most would judge Will to be a very mild, even-tempered person. However, over the years we've had tears, anger, confusion, inappropriate/long lasting focus on one issue, hyperactivity, lethargy, paranoia, etc., that can all be linked directly to a medication or combination of medications he is on. Just recently, while in the midst of med changes and adjusting to a new VNS, he has been doing the over-focusing thing, while physically, his appetite has deserted him and he has lost 34 lbs. I cannot imagine how confusing and frustrating this must be for him.

Robert's Sister: Have you done any advocacy work (individually or with an organization)? What made you want to be involved?

Honestly, other than fundraisers for the Epilepsy Foundation of NJ, I find myself being a very insular person as far as advocacy is concerned. I am happy to answer questions for friends of friends who are going through a similar experience, as well as for perfect strangers through the Children's Hospital of Philadelphia. However, especially since my husband left 5+ years ago, I find myself often feeling overwhelmed with Will's care. When he's with his dad (Wednesdays for dinner, Saturdays overnight to Sunday PM), I'm grateful to either have time to myself, spend time with my daughter or to connect with friends. I look at all that you do and wish that I had the emotional strength to be more giving.

Robert's Sister: How has epilepsy affected your life?

My role as Will's mom has changed little in that my big boy continues to require the same amount of supervision and care that he did when he was a little boy. There are times when this is very wearying because in the "normal" course of life, your children grow up, move on to a certain degree, and a 58 year old woman starts to explore what she would like to do for the rest other life. Being Will's full time caregiver as well as his custodial parent can present a unique set of challenges...he gets home from his 4 hour volunteer program at 1:30, and then it is only he and I until 10/11 pm. However, I am on a constant quest to be grateful that I can stay home and be his full time caregiver, as well as stopping the "what now?" lament by embracing that there are a lot of "new normals" that need to be accepted, and just move on.

Robert's Sister: What is your favorite memory of Will right now?

So many, but this one is so indicative of who Will is. I have a muscle disease that can render me a little weak/unsteady of my feet at times. One morning, while I was standing in front of the open refrigerator putting food away, Potter (Will's service dog) playfully ran by me very quickly, just brushing my leg. Unfortunately, on that day, it was enough to land me flat on my back. As I was catching my breath (I was fine), I was thinking that Will, who was sitting nearby eating his breakfast, must be dying with suppressed laughter as it must have looked like something out of Tom & Jerry. All of a sudden, I felt two hands under my shoulders, attempting to lift me off of the floor. No laughing, no joking, not even talking . . . just calmly helping his mom off of the floor. It truly touched my heartstrings and absolutely was an accurate example of the essence of Will.

Robert's Sister: What do you want people to know about epilepsy?

In general, I feel that people have a very one-dimensional vision of epilepsy. Either it is some poor, pathetic crazily sick person convulsing, losing control of bodily functions, needing to be hospitalized with every seizure, OR a condition which can be successfully treated with medication, so what's the big deal?

There are so many layers, so many different ways that people are affected by epilepsy, so many types of seizures, and no two cases are alike. Will began life developing as a normal child; started seizing at the age of 6, and epilepsy never looked back as it ravaged his wonderful brain.

He has times when he appears very unaffected and normal for brief periods of time, and people are always very anxious to paint an unrealistic picture of him being cured. They don't understand that these are brief intervals, and even during these intervals, if they spent time truly interacting with Will, that his permanent brain damage will not go away AND he is still having small seizures that they cannot see. I've had professionals at school say that he seems to do better when he's busy!

I think that people are very intimidated by epilepsy because there are no pat answers for diagnosis, identifying seizures, treatment, etc., so they go ahead and scarily simplify it themselves. I wish people would throw away their preconceived notions of this damnable condition, and open their minds and truly listen to the individuals and their families who are actually walking the walk.

Robert's Sister: Is there anything else you want to say?

Not really, except to thank you for giving me the chance to answer these questions. It has proven to be very cathartic.  :-)

Robert's Sister: Please tell us how we can contact any organizations you support or if you have a website or business.

Nothing comes to mind right now, but thank you so much for all that you do. Your efforts in all directions inspire and give support, strength and hope to many, including me.

I think what Eileen says about epilepsy being different for everyone is so true. There are so many different kinds of seizures and they wreak havoc on the brain – not to mention the medications that can cause so many different (and awful) side-effects.

What Eileen is doing as a single mom is phenomenal. Caregiving is tough work but Will is well taken care of and protected and it is clear he loves his mom. (I have to admit, the story of Will picking Eileen up from the kitchen floor brought me to tears.)

I am grateful to Eileen for her time and appreciate her true friendship.

Trish