Still hoping for answers...for an End

We are still hoping for answers. Still hoping for an end to Adrian's seizures.

It has been a while since we shared about seizures and epilepsy. We wish that were because nothing has happened, that things are "normal"...

The truth is, Adrian has had a couple more seizures since we shared about the one that happened at Panera Bread last June. Once at the airport while on his way to visit his sister in Texas last fall. Once just before bedtime at home early this year. That one and the post-seizure psychosis was very intense, but we had a neighbor and family come to help.

Because of this recent activity, our visit to Adrian's neurologist at Penn Medicine in Philadelphia this month resulted in some different conversations.

Adrian was already in the middle of a medication change. Partly because the Vimpat he's been taking is not proving to be effective anymore, and because our health insurance put Vimpat on the "non-formulary" drug list leading it to cost us about $800 for a 3 month supply instead of the $40/month we were paying. No thanks!

These are tough transitions because people can't just suddenly start and stop seizure meds. It's a gradual addition of a new drug while remaining on the other, then gradually reducing the original med. It can really mess with the body. Adrian's been adjusting pretty well, but some days are rough.

But the conversation we had with his neurologist's physician assistant did NOT fill us with hope that this new medication will be the "solution" to his seizures. She said that about 30% of the population of people with epilepsy are resistant to drugs completely stopping their seizures. If two or three different drugs have not been successful, it's not likely that any drug will work 100%.

Adrian is now trying his 5th medication in 6 years....

Her facts left a little sting as we continue to seek answers on this journey. But she is a knowledgeable and kind provider, so we trust her insight.

So then what? If Adrian is not likely to be seizure free on medication, what options exist in the medical world?

We are seeing one of the leading neurologists in the country, who spends much of his time in research at Penn Medicine. They have an epilepsy center that allows them to keep patients for several days or a week to closely monitor seizure activity to see what's happening in the brain during an episode.

They intentionally provoke a seizure to occur in this controlled environment through means such as flashing lights, sleep deprivation, medication reduction and more.

The P.A. recommended that if Adrian has a seizure while on this new medication, he should consider participating in this study.

On the one hand, it would be wonderful to have a more clear picture of what's happening in Adrian's brain when a seizure occurs and how that could help better treat the issue.

On the other hand, the idea of sitting in a hospital for a week with wires attached and video cameras watching your every move while KNOWING that a seizure is coming...is pretty horrifying to us.

At this point, we are gearing up for the possibility of doing this sometime in the next year. He's going to have current MRIs and EEGs done this summer, since it's been three years since his last ones. Then, we'll see what happens and what we decide.

For now, he's still increasing the new medication and getting blood work done to make sure it's at the proper dosage for his body.

In spite of this on-going issue, Adrian continues to lead our family with love and strength. He amazes me everyday with his work ethic - He doesn't 'help' with housework...he does about 90% of it! He cares for our year-old son with sweet tenderness and understands his needs better than even mommy. And he is the involved father that our daughters need.

It would be wonderful to get some better answers. But it will be most wonderful when he can live years without this cloud lingering so close by.

Adrian and I out for a date nigh last week. I can't tell you how much I appreciate this man and all he does for our family, especially while facing daily health-related challenges.

12 Days in the NICU, so long yet so short

Baby Adria spent the first 12 days of her life in the NICU (Neo-natal Intensive Care Unit) at A.I. DuPont Hospital for Children. Really, we were fortunate it wasn't more because many babies have to stay much longer. For instance, my friend Amanda's preemie little boy was recently in the NICU for 35 days and some of the mom's we met during our time in the NICU had been there for months with their babies.

I ached for them because even just 12 days can feel like forever when that is your whole world. 

Her first three days in the NICU, I was not with her. It was a heart-wrenching experience to deliver my newborn baby and have her taken away from me for days after only getting to see her a few minutes. As I've mentioned before, she had to have spina bifida closure surgery at the children's hospital about 20 minutes away, while I had to remain at Christiana Hospital for a few days to recover from my own surgery.

It confused my body. Other than the piercing pain in my gut from the C-section, my body had no proof that my baby had come out. I had never gone into labor or had a single contraction that I felt, and there were no cries or coos from a newborn baby around me.

While it was painful during those days to be apart, I was comforted knowing I would see her soon. I couldn't help but think of mothers who do not have that comfort... Plus, Daddy was there with our little girl, while my mom offered support to me.

Daddy in the NICU while the nurse tended to Adria

I wanted desperately to be able to give our baby mommy's milk and the early colostrum that they call "liquid gold" for newborns. But, my body did not think it was time for milk yet. I tried to pump every three hours, but during those first few days only a few drops came out. The nurse would still put it in a tiny syringe, and have it taken up to A.I. DuPont Hospital where Ade could help feed it to her.

However, Adria was not allowed to eat anything her first day of life before her surgery. She was not happy about that! She had an IV that nourished her body and was quickly introduced to the Soothie pacifier, which Ade said she sucked on feverishly. That was the start of a special three year relationship between her and Soothie :)

Adria was blessed to have one of the best pediatric neurosurgeons in the world to operate on her back and put the exposed spinal cord back in place. Dr. Benjamin Warf was only at A.I. DuPont Hospital a couple years, but he was there when my baby needed his especially gifted hands and brain. I will share more about this incredible doctor another time.

Baby Adria still sleeping from the anesthesia on the day of her spina bifida closure surgery.

Her surgery did go as well as we could have hoped, and she was able to take formula from a bottle within a day. We were very fortunate that she did not need a feeding tube or oxygen like many NICU babies. There was a 3 or 4 inch area on her lower back wear she had stitches from the surgery, so she had to lie on her tummy only for several days.

She was born on Monday, had surgery on Tuesday, and on Thursday I was released to go to my baby girl. Praise the Lord!

From the time I got to the hospital that day until she was released over a week later, we did not go home. We spent every day in the private room she had in the NICU. We ate meals in the hospital cafeteria, where I was given a free pass for food since I was a "pumping" mother. The only time we left the hospital during those 12 days was at night to sleep in our room at the nearby Ronald McDonald House. Thank you, if you've ever supported that charity! We were able to stay there for less than $20 a night, and it was a blessing even if we could not sleep that well.

Our only break out into the "real world" was a couple times when friends came to visit and treated us out to dinner. We suddenly remembered there was more to the world than our little baby and her hospital room. It was a blessing to have many friends and family come welcome our little girl. They'd have to take turns coming in as only two visitors (including me or Ade) were allowed in her room at any time.

Aunt Leona, who would become a huge help over the years with Adria!

Mommy holds baby for first time without pillow

Ahh, Daddy loves his little girl

Granny Seely falling in love

Uncle Cameron, who is the best gift-giver and ultimate fun

Uncle Aaron, who can always make Adria laugh

Mommy's cousin Clairissa

Gramma Outten loving on her newest grand-daughter

Grandpa Outten gives unconditional love

Mommy doesn't mind the cries

Lovin' her Soothie

Mommy's friend Amanda

Mommy's marathon friend Lori

Mommy's friend Rita

Super sweet Aunt Bonnie

We did not have to stay at the hospital all the time, but we wanted too. Just to sit there and hear her breathing and look at her precious features kept us interested. Plus, doctors regularly came by without notice and had important updates and valuable information about her progress that we didn't want to miss.

She underwent many tests during those 12 days, but the most important were the ultrasound and then MRI of her brain. The ventricles of her brain were slightly enlarged with fluid, so they were monitoring her mild hydrocephalus to see if she would need a second surgery on that before going home. Thankfully, she did not and we were able to bring her home once Dr. Warf determined that her back was healed enough to ride in a car seat.

They also showed us how to catheterize Adria to empty her bladder if necessary, but the tests on her bladder and kidneys did not indicate that we would definitely need to do that.

Though the days felt long sitting in that hospital room, we couldn't imagine driving home an hour and a half away and leaving our precious baby. We so appreciated the great care that she received at the hospital, and it gave me the opportunity to rest and heal from my surgery as well. But, when they gave us the okay to be released, we were more than happy to be packing up and heading home with our newborn!

The MRI and EEG results are in...and a grand Philly lunch

This summer we have traveled north about 1.5 hrs to Wilmington and Philadelphia at least five times to doctor appointments for both Adria and Daddy.

Now that we have moved back to Lower Slower Delaware - a land of farmers, chicken houses and some decent coastal beaches - our options for local healthcare are more limited, but fortunately we are within a couple hours of some of the country's finest medical centers.

Alfred I. duPont Hospital for Children and Hospital of the University of Pennsylvania are two such facilities where we are privileged to receive medical care. During one visit in July, we spent the morning with Adria at the children's hospital, then dropped her off with Ade's cousin and his kind family, while we went up to Philadelphia for an MRI.

It was a long day of appointments, especially when we ended up having to wait three hours for Adrian to get his MRI. In case you are not familiar with this procedure, MRI stands for magnetic resonance imaging. According to Penn Medicine, it allows imaging of the interior of the body without using x-rays or other types of ionizing radiation.

In Ade's case, it shows fine detail of every part of the brain in an attempt to locate tissue damage and a source for the seizures. He had an MRI done in early 2010 after his seizures first began. No tissue damage or abnormality was apparent at that time. The MRI machines are huge and loud, but you have to lie in a confined space for quite a while as the testing is done.

The tests are expensive, but we agreed that it was a good time to have it done again, since it's been over three years and the seizures have worsened. Plus, we just started going to the Penn Epilepsy Center this summer, and they needed to establish a baseline for treatment. After three years of seeing four different neurologists, who all did their own different tests and med changes, the last one we had in Virginia finally said that he was limited in the help he could provide and he would refer Ade to a specialized epilepsy center at a major hospital.

That's basically how we came to see Dr. Brian Litt with Penn Medicine, who ordered the study. He's a great doctor, who genuinely desires to help improve our situation.

One of the reasons it took so long for the MRI in July was because when Ade was prepping for his MRI, the nurses and techs became so nervous when he described what happens when he has a seizure that they were calling security trying to be prepared just in case one happened during the study. In the end, they figured the best solution would be to have me stay in with him during the MRI, so I could tell them what to expect. I guess it just shows, that even with highly trained medical professionals all around, we are responsible to be somewhat of "experts" regarding our own health.

We went back up to Penn Epilepsy Center in Philadelphia on Tuesday to talk with Dr. Litt more about the results of the MRI and the EEG that had been done earlier.  We were thankful to be there just days after passing the six month mark since the last seizure, it's encouraging that we've made this far without another episode.

Still, we were anxious to hear his feedback in hopes of learning something new, yet hoping that nothing major had shown up.

Nothing had. His brain looks healthy on the MRI, no obvious abnormalities or damage. Ok great, I guess...

The EEG study, officially called electroencephalogram, measures and maps brain activity. Ade has had this done several times before, and even had a 24 hour study where he had to sleep with these wire feeds glued to his head. Litt said the EEG study he had in June showed increased activity in the right temporal lobe and slight focal displation. This indicates that a minor brain malformation is possible, but it's likely microscopic.

Litt went on to say that the erratic behavior Ade displays during a seizure event would indicate that source of the seizure activity could be coming from the right frontal lobe of his brain. We have heard this before, as this area of the brain largely controls our behavior.

Just because tissue damage is not evident in the MRI, does not mean there was never an injury. It could have happened when he landed wrong jumping in the pool as a boy or any similar incident that resulted in a headache.

The image below is from the Brian Injury Association of America website, showing the areas of the brain.

I found an interesting article about frontal lobe injuries from the Brian Injury Institute.  It says, "Because your emotions are affected, the symptoms you experience from frontal lobe damage may manifest causing you to become impulsive or assume risky behaviors...The right frontal lobe is more involved with negative emotions, while the left frontal lobe is more involved in positive emotions....Because frontal lobe damage affects most aspects of behavior, mood, and personality, you will have to adapt what was previously basic human behavior, such as the relationship with oneself and others."

Well, at least that gives my husband an excuse for being a hot-head :) In all seriousness, it is helpful for me to read and learn more about it, so that I can be more understanding when things get crazy.

There have been many times when I have reassured myself with the belief that what he was saying or doing was not a true reflection of my husband's thoughts and feelings. It was altered by how the seizures impacted him. Often in the days and weeks before and/or after a seizure, this apparent difficulty in controlling impulses was heightened.

There is more that I have found and will elaborate on at another time, but suffice it to say that while we did not learn anything majorly new at this appointment, we are starting to piece some things together based on the studies and feedback that are leading toward a greater understanding of what it happening.

For now, he just had some blood work done following the appointment to make sure that his medicine levels were good, as there might be some slight adjustments in the amounts.

We finished up our time at Penn Medicine around 1:00 p.m. and decided that we should make the most of our trip to Philadelphia without children. Just a few miles away we parked near 17th and South Streets and happened upon an elegant restaurant called Davio's Northern Italian Steakhouse.

Since it was later in the lunch hour, the restaurant was nearly empty but we felt slightly underdressed for the formal atmosphere. Not a problem though. We thoroughly enjoyed this fine dining experience, and though it was pricy, we could splurge on the lunch menu.

The waiter greeted us by our last name and when he said the day's special, I only understood the part about scallops. I had no idea what that other stuff was, but why not try it? It was a delicious three-course meal with a veal and mushroom appetizer, seared scallops with pureed sweet potatoes for the main course, and a vanilla custard-like dessert... All amazing! Ade savored his salmon dish and cheesecake too.

Sure, this Sussex County girl was a bit out of her element, but I could adapt. If you're facing tough things and more doctor's visits than you care to count, ease the load and take time to celebrate life and enjoy lunch with someone you love. It helps!