The Deep Brain Stimulator for Epilepsy: Progress

The first time the Deep Brain Stimulator was activated, Robert’s seizures increased. 

No, that’s not supposed to happen. 

I deactivated the device but hoped we would be able to somehow, eventually, use all this new hardware in Robert’s body. The leads, the battery pack – everything he went through to get it cannot be for nothing. 

Robert’s neurologist sent me a message to come in at the end of August to try again. I was so happy that there was another way this device just might work! 

I had a management meeting at work in the morning and Robert’s appointment in the afternoon. My brain was getting a workout today! Good thing I had fresh memories of our beach vacation floating around in my head to keep the stress at bay. 

Dr. K, Robert’s epileptologist, came into the room as enthusiastic as ever. He clearly cares about his patients and is as disappointed when a treatment doesn’t work for Robert as we are. He will not be deterred, however! 

I sat with my list of questions and Robert sat with the box holding the Patient Programmer (basically, a phone with an app) and a wireless recharger (the part that goes over the battery pack in his chest). 

Dr. K explained that he talked with Stanford who conducted the DBS study that Robert had been in. The setting they used in the study was different than what Dr. K started with during the first activation. He was confident this different setting was going to have a better result. 

How will the setting be different? 

I am not a scientist but Dr. K was both patient and brilliant at explaining the process to me. I created a rudimentary illustration to show to my fellow non-scientists (apologies to any readers who are actually scientists!). 

Basically, the first setting had sections 1 and 2 activated. That created a constant electrical current in the brain but, for Robert, it was too much too soon and it caused him to have seizures. 

For this second try, only section 1 was activated. That allows for a more diffused electrical current which should be easier on Robert’s brain. We start at Setting A which is 2 milliamps in just that section 1 (in both leads). After two – four weeks I can increase it using the Patient Programmer and move the device to Setting B. That will deliver 3 milliamps – still in both leads but only in section 1. 

If all goes well, a month after Setting B is activated we can go to Setting C (4 milliamps). Dr. K says we can eventually get up to 7.5 milliamps but that there is no statistical difference in performance between 5 and 7.5 milliamps. 

I asked if we should leave it on longer this time if it does cause seizures again. Maybe Robert’s brain needs to get used to it? Dr. K said that might be a solution but also explained there were other settings he could try. He sounded very confident that we would be able to find a setting that worked for Robert. He said the amount of people that have an increase in seizures from the DBS is in the single digits. We just need to find the right setting for Robert. 

Photo of leads
(Credit: Medronic)

Once it was activated again, Dr. K asked Robert if he felt any tingling. Robert said he didn’t feel anything (that is not unusual but some people do have a sensation on one side of their body when it is activated. That’s nothing to be concerned about.). 

We talked about reducing his medications once we know it is working. Dr. K is very concerned about Robert continuing on the Depakote since it is affecting the ammonia levels in his liver so much (which causes confusion, sleepiness and mobility issues). 

If this DBS actually starts working I will be thrilled to start reducing the meds. Getting Robert to have more functionality and mobility not only helps him but us. It also would greatly help once we are no longer able to care for him (I have to think about these things). 

We left the office very hopeful (at least I did; Robert had long since fallen asleep while Dr. K and I talked about him). 

Robert had a couple of seizures over the next few days but nothing like when we first activated it. Eventually, they subsided. 

Was this working?? 

Not yet. Robert’s typical seizure cluster came pretty much on schedule (every 2 – 3 weeks) and his most recent one was a doozy. He had close to three dozen seizures in 25 minutes. Even his rescue med (Nayzilam) took longer to work than usual. 

Okay. The DBS at the lowest setting is not working. We didn’t really expect that setting to be the one that works but at least it didn’t cause more seizures. 

Three weeks after the initial re-activation and a week after the seizure cluster, I increased the device to Setting B. Robert did feel like he was being “tickled” once I increased the setting but it went away after a few minutes. 

The plan is to increase the device to Setting C in 3 – 4 weeks. If we see fewer seizures, that’s when we can start reducing his medications. I don’t want to get ahead of ourselves or jinx anything since we just got to Setting B but we are on our way! 

I hope this information helps you understand the Deep Brain Stimulator from a patient or caregiver perspective. As I mentioned, I am not a scientist or a medical professional but I am happy to answer any questions about this surgery and the whole process. 

Thank you for following Robert’s journey to, if not seizure freedom, at least seizure (and medication) reduction. I know a lot of people are rooting for this to be successful! 

Oh, and to everyone asking the most important question: Yes, of course, Robert got a chocolate shake after the activation by Dr. K and chocolate ice cream after the increase to Setting B! 

The Deep Brain Stimulator for Epilepsy: Take 2!

One of the questions asked about Robert getting the Deep Brain Stimulator was: what do we hope to get from it? 

While many may think the obvious answer is to reduce seizures the more complete answer is a bit more complicated. 

At this point in Robert’s life, the anti-seizure medications are what are causing so many problems. High ammonia levels (from Depakote) leading to reduced mobility and functionality and increased confusion. Vimpat literally making him lose his balance and his ability to walk (putting Robert on a very low dose has helped with seizures but any increase will negatively affect his mobility). 

Robert is on five different seizure medications along with a bunch of other meds to counter-act side-effects of those medications. He’s on so many a doctor seeing Robert in the hospital questioned him being on so many and said he’s never seen a patient on that many anti-seizure medications. The doctor clearly needs to spend more time in the neurology unit. 

(He tried to make changes to Robert’s medication regimen but anyone who knows me knows that didn’t happen.)

Our hope is that this DBS will control Robert’s seizures so we can reduce his medications and he can maybe even regain some of his functionality and mobility. 

That’s not asking too much, right? 

Robert went through the two surgeries and we were able to move up the appointment to get the DBS activated. (Thank goodness the neurologist was on standby for jury duty and could squeeze us in!) 

Time to activate this baby! 

At the appointment, Robert and I patiently awaited the neurologist. I reviewed my questions I had written down and Robert cracked jokes. 

I thought about how fascinating this device is, and, really, nothing short of a medical miracle. Leads go into the brain, hook up to a battery in the chest and it can be controlled with a phone and a hand-held programmer device that goes over the implanted battery to activate it. 

Robert has been very lucky with the quality of his epileptologists even though he’s had several of them. His current neurologist (Dr. K) is kind, smart and takes his time to explain everything. He knows we’re a team and he is as hopeful about this working for Robert as we are. 

Another neurologist came into the room with Dr. K and she introduced herself as a fellow. She was learning about the DBS which I didn’t mind at all. They are part of an award-winning teaching hospital and I am thrilled to have these talented doctors and students as part of Robert’s care team. 

Dr. K explained the DBS has three settings and delivers a constant electrical current. It starts out on setting A which delivers a low electrical current, then after a month (if it’s not yet controlling the seizures), the patient (or caregiver) can move it to setting B which delivers a little more of an electrical pulse. Setting C is the highest setting and that is where most patients end up but it takes three or four months to get there after the initial activation. 

Dr. K activated the device, showing me the different settings and explaining some side-effects to watch for (depression or tingling on one side of the body). He explained how to control the device at home and said I could increase it to setting B after one month if Robert seemed to be tolerating it okay. 

He said another MRI may be needed to be sure the electrodes are still placed correctly but he didn’t think that was necessary just yet. 

It seemed simple enough to activate and control. It’s basically an app on a phone so I was comfortable with it once I figured out how to open the app and he took me through the steps to control it. 

How will we know it is working? If Robert has fewer seizures, it is working! Simple as that. Robert’s seizures come in clusters every two to three weeks. If the clusters don’t come, it’s working. If his seizures come as frequently as usual, we move to setting B. We left the office feeling very hopeful. 

This is going to work! I just know it. 

The next day Robert had a seizure cluster. I brushed it off since he was “due” (his seizures are pretty regular so I didn’t find it unusual that he had any). 

The day after he didn’t have any. Phew! 

The day after that, he had another cluster. Then another the next day.  

He continued to have seizures almost daily for six days after the DBS was activated. 

This was not a side-effect anyone expected. 

I was in contact with Dr. K’s office and was told on the sixth day to turn it off. 

It was heartbreaking to deactivate it. Robert had gone through so much (heck, we all had) to be able to use this device and now it is causing him more seizures. Knowing he had the electronics in his head and chest and it was just sitting there, not being used, going through all the surgeries and MRIs and appointments . . . 

Heartbreaking. 

I turned it off but did so while hoping the seizures would continue. I’ve never wished for Robert to have seizures but just this once I wish they would continue. I was hoping the seizures were caused by something else and that it was just a weird coincidence they happened after the DBS was activated. 

No such luck. 

The seizures stopped. He’s had a few (his normal) since then but nothing like the daily clusters he was having while the DBS was on. 

We had planned a long weekend beach vacation for later in the month and made the most of it. It was what we all needed after such a stressful and disappointing process the last few months. 

On the last day of our vacation Dr. K messaged me and asked if we wanted to try again with a different setting. Yes! I am hopeful there is a setting that Robert’s brain can tolerate. Maybe there’s a setting below A that we can start with instead. Maybe we need to leave it on longer than a week and let his brain adjust. Maybe we need another MRI to make sure everything is still located where it’s supposed to be. 

Maybe there is still a chance for this DBS to work for Robert. 

Today we go in to try again. I have more questions. Robert will have more jokes. We know we have an army of people saying prayers, sending well wishes and hoping for the best for this second try. 

Hope and support are what we are hanging onto. 

Hail Mary

Robert will be getting the Deep Brain Stimulator (DBS) at the end of June. 

It feels like a full circle moment since at the time we started caring for him, he actually had a Deep Brain Stimulator already implanted. The DBS wasn’t yet approved by the FDA but he was in a study through the UCSF Epilepsy Center. Unfortunately, he developed an infection in the area where the stimulator part is implanted in the chest and it had to be removed. His infection was so severe that they also needed to do a separate surgery to remove the leads that are implanted in the brain and he couldn’t continue to participate in the study.  

It was disappointing but at least he survived the infection. (Robert has cheated death more times than I can even count.) 

Year after the device was removed I found out that Robert was in the part of the study with an active DBS and that it had helped reduce his seizures. The DBS was eventually approved by the FDA for treatment of severe epilepsy so his epileptologist suggested it as something to consider for Robert. 

We talked to the surgeon in 2018 and, because it was such a hectic year with my husband’s health issues (not to mention me having a stroke that year!), I put the DBS on hold.  

Robert continued to decline: he had frequent clusters of seizures, reactions to medications, hyper-ammonia from medications, worsening of mobility, functioning and memory (a result of a combination of seizures, medications and his neurodegenerative process). 

The doctors tried new medications; various doses of medications; weekly physical therapy. 

Richard and I tried a home caregiver (fantastic but she can’t help with Robert’s worsening physical mobility); we adjusted how we care for Robert (forget about daily baths or even street clothes); bought a new bath chair and a bedside commode. We learned tricks from the physical therapists on how to move him without hurting ourselves. We learned from the hospital nurses how to change him in bed when he was having a really bad day. We have a script for a hoyer lift. 

The doctors adjusted to the decline. We adjusted to the decline. Robert continued to say he was doing “super, amazing, excellent and great” and didn’t even seem to notice a decline. (Only rarely does he get frustrated with his inability to stand or transfer.)

Robert’s support team has a deep bench (as they say in football) and we made as many adjustments as we could but, at this point, we need a Hail Mary. 

I’m a huge fan of college football so I know a Hail Mary can work and it’s so exciting when it does. But that period when the ball leaves the quarterback’s hand and is sailing through the air and you don’t know if it’s going to be caught – that’s when you hold your breath and pray. 

Robert has prayed his entire life for his seizures to go away. 

Moving forward with the DBS is probably the last chance we will have to give him that. 

I personally don’t think it will completely take away his seizures but I do hope this device will give him better seizure control. My hope is that it will allow us to reduce Robert’s medications which would then help with his mental fogginess and, maybe - just maybe - even improve his mobility. 

That’s my hope. Maybe it’s more of a wish. It is probably as likely to happen as Robert’s prayers for zero seizures but I need to give him this chance. 

I need to try the Hail Mary.  

We will worry later about what comes next if this doesn’t work. 

For now, we have one more chance for a win. 

Time to hold our breath and pray. 

2018: Goodbye Awful, Hello Gratitude

I fully intended to write about the awfulness that was 2018.  For most of the year, I have been saying it has ranked high on the list of “worst years ever.”

After all, 2018 brought us Carol passing out in our dining room and smacking her head – lying unconscious for long enough that I was convinced she had died. 

Robert was hospitalized three times due to a variety of reasons: the flu (even after getting the shot), sepsis, pneumonia (twice before March), RSV (respiratory syncytial virus), and a week-long video EEG (which caused yet another bout of pneumonia).  He had his usual episodes of aspiration pneumonia which didn’t get severe enough to get him to the hospital but which knocks him out for at least a week.  Oh, and the usual seizure clusters (at least twice a month) which almost seem like the least of the problems he had in 2018. 

Richard underwent four skin grafts on his never-healing wound and saw each one fail.  Even after spending many days in the hospital on aggressive antibiotics and wound care. 

And 2018 also brought me my own huge wake-up call: a stress-related stroke that left me with numbness in my thumb and face. 

I almost forgot!  2018 also decided it was a good year for me to get side-swiped by a semi which left me very shook up but, thankfully, unharmed.

At first glance, yes, 2018 was nothing short of awful and stressful and, most certainly, difficult. 

I was the most overwhelmed I have been in my ten years of caring for Robert last January when both he and Carol were in the hospital at the same time and Richard was still recovering from his first skin graft.  And that was the first month of the year – before the weight of the year really bore down on us!  

I had no idea we were just getting started with our “epic” year. 

So, yes, 2018 was just awful but as I was looking through my calendar and photos from the year, I realized it was something else: wonderful!  I was so focused on how stressful it was that I had minimized the beauty of it. 

While Carol and Robert were in the hospital early in the year, our son-in-law spent hours converting our bathroom tub into a walk-in shower. It is not only so much easier for both of them to get in and out of but it is absolutely gorgeous!   

My best friend married the love of her life and one of my other dear friends drove me the five and half hours to the beautiful ocean-side wedding so I could be there for Joelle!  Sarah and I made the trip in one day so we only missed one day of work but we had a blast surprising Joelle and she got us there and back safe and sound (even with me cringing in the passenger seat because of the ridiculous drop-offs on some of the “roads”).  Bonus: I got to see the ocean!!

Richard and I took a trip to Alaska – just the two of us!  It was so relaxing and so much fun to spend time together without having to worry about hospitals, seizures, medications or caregiving. We saw whales and seals and more bald eagles than I thought I would ever see in my life!  The trip fueled my soul and I could feel the stress washing away. 

We had a second wedding later in the year when my step-daughter was also married and which brought an opportunity for family (including the siblings) to be together.  Two weddings in 2018!

Our annual trip to Disneyland for Epilepsy Awareness Day brought a reunion of sorts with my co-authors.  It feels as if they are always by my side (which they are) but we rarely are able to see each other in person. Hugging them was just what I needed in 2018. 

2018 also led me to a writer’s conference which introduced me to people I probably would have never met if I hadn’t taken the step to attend.  (I’m actually not sure I would have pushed myself to attend if I hadn’t had a stroke.)  It was out of my comfort zone but it is possible this will lead to more exposure for our books and some wonderful opportunities (fingers crossed)! 

And I don’t want to jinx anything but my face and hand numbness seems to be lessoning in intensity!  With any luck, I am hoping it will go away completely. 

When my mom became sick almost 20 years ago and we knew she only had few months to live, our motto became “there is no time like the present.”  We visited the ocean, we welcomed visitors we hadn’t seen in years, we shopped; we shared recipes, watched movies and played games. If 2018 taught me anything, it was to remember that motto and to live like there is no time like the present – whether we are dying or not. I did not need a terminal illness to remember that lesson (although, apparently, I did need a somewhat dramatic kick in the pants.)

Most importantly, throughout the year, I had the incredible love and support of my family and friends.  I know many caregivers are not as lucky as I am and, unfortunately, have family who abandon them.  I am fortunate – no, I am blessed (and I know that word is overused but I have to use it) – to have a daughter who spends time with me and who makes me laugh; a husband who pushes himself through pain to help alleviate my caregiving load and loves me so much; friends who listen to me rant at any time; a son-in-law who, regardless of how busy he is, spends hours helping us with home projects; a beloved mother-in-law who is there for both Richard and I as much as we are there for her; extended family who make me laugh and help whenever we need it and a sibling who not only appreciates the care I give to our brother but who is extraordinarily generous (beyond – I mean, he gifted me with a new car for my birthday! Who does that?!?!).  He is not only extremely generous but also emotionally supportive (and even came through in a pinch when I needed someone to stay with Robert during wedding #2).  I am happy to report that he and Taz are now pretty much best friends. 

My year may have been overwhelming and over-the-top stressful but through it all there were always smiles (sometimes through the tears or after them).  2018 ended with gratitude and love and the realization that we came out alive but also with a hope for a quieter 2019.  

I’m all for lessons and challenges and don’t want to be selfish but a less eventful year would be a welcome relief. 

Here’s wishing all of you a happy, healthy and hopeful year!  May 2019 be excellent for all of us! 

Epilepsy Awareness Day at Disneyland

I am already thinking about Epilepsy Awareness Day at Disneyland 2018.  That’s what this event does to you – it inspires, educates, supports and leaves you feeling all gooey inside!

And that’s not just from the Mickey Mouse Rice Krispy chocolatey goodness treat that I had to have on Day 1.

This was the fourth year Richard and I took Robert to EADDL and the event gets better each year. Friends and family attend with us which makes my heart oh so happy! We meet new people who are affected by epilepsy in some way.  Families travel from England, Australia, Florida – you name it and I’ll bet that state or country was represented. (If it wasn’t this year, it most likely will be in the future.)

I know it is not always easy for families to travel to such an event but there was not one person complaining. It is not easy to travel with someone who is disabled and may need to go through an extra security screening at the airport. Or someone who might have a seizure (or be worried about having one) on the plane or at the event. Or someone who needs to organize a week’s worth of medication.

I worry that I won’t bring enough briefs or bed pads for Robert.  I worry that all the excitement will cause him to have seizure clusters (the last few years the event did cause seizure clusters but this year he only had a few sporadic, minor seizures).  I worry that it will rain (and we all know Robert melts in the rain). 

I worry that I am not getting the absolute best deal on the flight or the hotel. (I practically have a panic attack when making travel reservations because I am so fearful I am going to pay more than I should!)

My worries do not stop me from going but they do prod me to be very, very organized and prepared for any (and I mean any) contingency. 

What if Robert ends up in the hospital and we have to stay a few extra days? No problem: I bring a few extra days’ of medications (and have the nearest pharmacy and hospital listed on my itinerary).  What if Robert leaks through his brief at night? No problem: I bring enough pads to spread under and on top of him (thankfully, he’s a good sport about it).  What if pneumonia strikes again? No problem: I packed his at-home supply of antibiotics and his inhaler (and have his pulmonologist on my phone’s “favorites” list).

That’s what these families do: prepare, prepare and prepare and then take a leap of faith it will all work out.

And it does.

These families inspire me so much! I met many moms and dads with young kids with epilepsy; a grandmother traveling with her grandkids who have epilepsy; a single mom with her young adult son who has epilepsy; parents with adult children with epilepsy; friends attending with a friend who has epilepsy. 

We get to meet other families who have taken this leap of faith to attend and it leaves such a smile on our hearts that we cannot wait until next year.

I even met one young lady who was at California Adventure by herself who had epilepsy. She hadn’t heard about Epilepsy Awareness Day at Disneyland but tapped me on the arm, pointing at my t-shirt and said, “I should be a part of your group. I have . . .”  Epilepsy?  “Yes! I have epilepsy too.”

We stopped to talk with her for a few minutes and she said she had been seizure free since 7^th grade and was now in college. She was delightful and sweet and I told her about the event and suggested she attend next year. I introduced her to Robert and she told me about the medication she was on that allowed her to remain seizure-free. She suggested I talk to Robert’s doctor about it and I thanked her for the information.

If we hadn’t been wearing our Epilepsy Awareness Day shirts she may never have known how many people were just like her.  Of course, I worried about her being at the park alone because she had an innocence about her that I was afraid people may take advantage of.

I recognized that innocence because Robert has it too.

Our encounter was brief but she left an impression. 

That’s what this event does too.

This event brings people together and gets rid of the stigma that epilepsy still has associated with it.

So dust off your worries, start your planning and preparing and join us next year at the annual Epilepsy Awareness Day at Disneyland and Educational Expo. 

Mark your calendars for November 5, 6 and 7, 2018!!

Hope to see you there!

I better start my search for the best travel deals – it’s never too early!  

Epilepsy Awareness Month – Interview with Amy Schlenker

I think it is only fitting to bring you an interview today, on Thanksgiving, with a mom who watched her daughter suffer through 75 to 100 seizures a day to now knowing her daughter is three years seizure-free. There are still challenges but I love this mom who has demonstrated day in and day out, for years, what resilience means.

Paige Schlenker

Sometimes that means soldiering on while feeling alone. Sometimes it means patiently trying medication after medication without any hint of success. Sometimes it means knowing siblings have suffered because the attention has to be on the child who is sick. Sometimes it means choosing a surgery that is dramatic, extreme and not without risk.

And, sometimes, that resilience and those hard decisions pay off.

Amy is that mom.  

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

I care for our 11 year old daughter, Paige.

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

Paige was diagnosed at 3 with epilepsy. Our local hospital didn't believe us when we took her to the ER; gladly we got an appointment with a local Neurologist within one week and referred to Children's Hospital – Colorado’s top Neurologist. She was diagnosed with Childhood onset of epilepsy shortly after. VEEG's, MRIS, testing, testing, testing, and home videos of her seizing was our best help with diagnosis. Kids don't seem to seize while hooked up to tests or in a hospital environment.

Robert’s Sister: How did you feel when Paige was first diagnosed with epilepsy?

Shattered. Going from a healthy, happy 3 year old to seizing continuously. Hardest part was no explanation as to why they started, and not understanding it all. We did find out after her first emergency brain surgery that the cause of her seizures was Cortical Dysplasia of the right side of her brain.

Paige Schlenker

Robert’s Sister: Did your family treat Paige differently after the diagnosis? If so, how?  

Most definitely! Our older sons started hiding out in their rooms, but I can't blame them, it was all very traumatic. All of our family seemed to treat us like we had the plague. In the eight years Paige has suffered with epilepsy and had three brain surgeries, not a single family member or friend has ever witnessed her seizures. We have been left alone in this.

[Editor’s note: The following paragraph was added after the original post was published.] I want to clarify that this is what WE felt when she first got sick. We were totally alone, and yes we did lose what we thought were some dear friends, people didn't know how to talk to us, so they just quit.

Robert’s Sister: Did the kids at school treat Paige differently because she had epilepsy?  

Yes and no. She has always been in a contained classroom, so her peers don't see her as different. Other children in the school do see her differently, majority of them are great, nice, loving to her, but also have the ones that have started making fun of her.

Paige Schlenker

Robert’s Sister: What treatments did Paige try? What worked? What didn’t work?  

Paige failed every type of AED [anti-epileptic drug], due to either allergic reactions, increase in seizures due to it, or just didn't help her. She was on six different AEDS by the age of eight. She had her third and, hopefully, final epilepsy brain surgery three years ago at eight years old, a complete right modified functional Hemispherectomy. She has been seizure free since the morning of this surgery. Her last seizure was at 4:00 a.m. on July 31st, 2013. She now lives with left hemiplegia. She has bilateral braces on her legs to walk and no use of her left hand what so ever, also functionally blind on the left of both eyes.

Robert’s Sister: Do you think the medications affect how Paige feels and behaves?

No doubt these medications are like poison. Our poor daughter had no regulation of any emotions, behaviors, feelings. She was in a complete fog most of the time. She had nocturnal seizures(75 – 100 nightly) so she never got sleep; then add Topamax, Keppra, Banzal, Lamictal, Diazepam and Onfi 2x daily and she had no chance of even a life.

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

We live in a very small town. I have worked with the local newspaper on articles during Epilepsy Awareness month, talk to the kids at Paige's school about epilepsy and what she has gone through over the years, and still today due to her left hemiplegia. 

The Schlenker Family

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

It stopped our life as we knew it. I feel like we have lost so many years due to seizures. Our older sons grew up, our youngest (who was two weeks old when Paige's seizures started) has grown up without me even remembering him as a baby; they all four missed any type of childhood.

My husband and I are stronger than ever – we have to be – but we have lost the "us." I haven't been able to work since Paige became sick which has caused serious hardship for us. But it also made us be strong, made us advocate for our daughter, learn about a disorder that I never knew anything about or heard about. It brought me into a world of amazing special needs families. We may have lost what we thought were real friends due to our daughters Epilepsy, but the fellow Epilepsy families I have meet over this journey has taught me what true friendships are.

Robert’s Sister: What is your favorite memory right now of Paige?  

That’s a hard one. I have great memories of her before epilepsy, the years during the worst of it when she still shined, but my favorite memories are recent ones. The sound of her laughter when she laughs so hard she gets the hiccups, cracking jokes to her dad, even when she gets angry with me. She is seizure free and off of all her AEDS, her mind is so clear, she is thinking for herself. This is what my happiness is. And to think they removed the entire right side of her brain for her to be this way!

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

It is truly devastating. I don't know how else to describe it.

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

I truly appreciate you for the Epilepsy Awareness you bring. You and Robert have been my inspiration over the years. You have taught me to advocate. We need so much more awareness than what there is now!

I am grateful to Amy, Paige and the rest of their family for sharing Paige’s story. It is families like this who bring about epilepsy awareness and who inspire me to continue to share their stories. Thank you, Amy. I hope Paige continues to be seizure free and I look forward to following up again in a few years when Paige is a teenager!

Since it is Thanksgiving, I would like to say I am grateful to the scientists, researchers, nurse practitioners and doctors all working to find a cure for epilepsy. I am grateful to the families who put one foot in front of the other to do whatever they can to stop the seizures. I am grateful to the epilepsy advocates who want everyone to know just how important it is to find a cure and to give these families and caregivers support.

I am grateful to you for reading these stories and sharing them with people who may not be aware of how serious and devastating epilepsy can be.

Wishing everyone a wonderful day full of love, family and friends.

Happy Thanksgiving!

Trish

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

Celebrations, Food Poisoning and Seizures

Oh my!

I love to make celebrations memorable and, boy, this year was a doozy but through no doing of mine.

September is a big month of events in our family. We have birthdays for Richard (husband), both of my brothers (Robert and Other Brother), one of Richard’s brothers (Mark) and one of our daughters (Caty).  Toss in our wedding anniversary and that is a lot of cause for celebration!

 

Three of the five September birthday people!
Robert, Richard, Rich (l-r)

Aside from all the celebrations, September has other milestones tossed in for me. My daughter, Rachel, had heart surgery as a baby in September. It is the month my mom died and the month that Richard almost died from his accidental Fentanyl overdose.

Big life events happen in our family in September.

I don’t get too melancholy about the difficult memories September brings but do acknowledge them. My main struggle through September is keeping the number of celebrations to a manageable level. I mean, apparently, having a celebration every five days is a bit too much for people.

We try to plan a big celebration to include everyone and then I like to do more intimate dinners on the actual day of the birthday.  We usually have a family barbecue at our house celebrating with Richard at the grill, the dogs running around underneath (and through, over, under) with all their dog-cousins and a delicious chocolate cake with several people blowing out candles.

In Robert’s words, it is always an “excellent” day.

Richard has been experiencing increased pain lately (we suspect the battery in his intrathecal pump is going out) so I suggested dinner out instead of the usual barbecue.  We get to enjoy each other’s company, eat delicious food and still have some chocolate for dessert. And no one has to do dishes!

What could go wrong?

Food poisoning is what could go wrong and did it ever!

Dinner out was Monday evening and Richard got violently sick Tuesday night. Rachel texted me Wednesday morning about how sick she was. Ack! I told her Richard had the same thing. I then contacted Other Brother: same symptoms. Richard’s brother, Jimmy, wasn’t sick but said he has a “gut of steel.”

I called Richard’s mom but she didn’t answer her phone for most of the day. Once we did reach her – yep, same thing.

Jimmy, Robert, Liz (Other Brother’s wife) and I were not affected. Wait – late Wednesday afternoon Liz succumbed to it.

Robert wished for his seizures to stop completely.

That brings the total to five out of the eight that ate dinner together struck with an awful bout of food poisoning!

How bad did it get? Rach and her fiancé, Matt, had to finalize some wedding plans this weekend so on Friday evening took a quick trip to Tahoe even though she was exhausted. On the way up, Rach texted me to say, “I forgot to bring pants.”

The after-effects are obviously still lingering . . . 

On top of the food poisoning, Robert had two days of seizure clusters! I don’t think it was related but it did add an extra layer of “WTF” to my week.  

September isn’t even half over but it has again proved to be another memorable month. Forgive me if I bury my head for the rest of the month.

Someone let me know when it’s safe to come out!