Karissa's Story

As National Epilepsy Awareness Month comes to a close, I wanted to share Karissa's story. Some of you are all to familiar with Karissa's epilepsy, but for those of you whom I have never met and who read my blog, I wanted to share her story with you. This is somewhat painful for me to write as it brings back a lot of unpleasant memories of Karissa's life. But, something that I want to share.

While we are almost certain that Karissa's seizures started from birth, we did not actually witness her first seizure until she was 2 weeks of age. It was Tuesday April 12th, 2005. We were returning home from a gig that Mark had played in that evening. We had driven separately, since Mark had to be there early to rehearse.


I can recall earlier that same day, after returning from the car wash, bringing Karissa inside and thinking "she looks a little blue." She was breathing and was awake and responsive but I knew something just wasn't right. A mother's instinct is always right! ALWAYS!! The same thing had happened a few days before while she was napping. Again, she was breathing normally.


After arriving home from the concert, I had Mark get Karissa out of the car. He brought her inside the house, still in her car seat. He put the car seat on top of the washing machine and proceeded to take her out. She was blue, stiff, eyes fixed and rolled behind her head and she was not breathing. Mark took her into the dining room and quickly removed her clothing and was trying to stimulate her little body. She had a pulse. Good.


Meanwhile, I had called 911. To this day, I can still remember everything about those few terrifying moments. I was in the kitchen when I made the call. I still remember exactly how the kitchen looked, the lighting, where I was, what was on the floor, EVERYTHING. I remember frantically telling the 911 dispatcher over and over that my baby wasn't breathing and that my husband is a doctor.


Even though it seemed like an eternity, Redlands police and fire, paramedics and ambulance arrived in just minutes. Our entire dining room was filled with unfamiliar faces, staring at my child, staring at us...it was weird. One of the men that was in our living room that evening was also present in our home on July 8th, 2008, the day Karissa died. By the time they had arrived, Karissa looked normal, as if nothing had ever happened. I felt as if we almost had to convince them that something was terribly wrong with our daughter. She was taken by ambulance to the hospital.


Once in the ER, a battery of tests were done on Karissa. It was heart-breaking to see my 2-week-old daughter, still a newborn, having to go through all the testing. I think the worst was when they had to perform a spinal tap, not once, but TWICE (they missed the 1st time), on my baby girl...I would have done anything to take her place and spare her the pain of having a needle stuck in her spine.


We were in the ER for what seemed like an eternity. The most frustrating part was that not one person seemed to believe what were saying. Seriously, are you kidding me?? My child was BLUE and she looked like she was DEAD. It was more than just "a febrile seizure that is very common." Karissa didn't have a fever to begin with so that made no sense whatsoever. It helped once Mark informed the staff that he was a medical doctor. At least that gave some credibility to what we were saying.


Not long after we were in the ER, Karissa had another seizure and then another. Ok, so now they believed us. Especially when her oxygen saturation decreased down to 60 and they had to get the crash cart. Praise God we didn't need to use it though. Her seizure stopped, she was given oxygen and she was ok.


Karissa was admitted to the hospital and was seen by the pediatric neurologist. She was started on, what I refer to as, the zombie drug, Phenobarbital. Those 4 nights in the hospital seemed like an eternity. I remember saying to the nursing staff to please keep the O2 on and ready just in case she had another seizure. At the time, knowing that O2 was there, was one of the most comforting things in the world. I was dreading taking my baby home and not having that O2 there just in case.


On Saturday April 23, 2005, Karissa was discharged from the hospital and given a diagnosis of Benign Neonatal Seizures of Unknown Etiology, meaning, no cause or reason was found to explain her seizures. Every test came back normal. We were told that she would "grow out" of her seizures.


Sometime in November of 2005, Karissa was weaned off the phenobarbital. It was a time where I was filled with such mixed emotions. I was happy to get her off that mind-numbing drug, but yet, I was terrified. The medication was the one thing that had stopped her seizures and kept her seizure-free for the past 7 months or so. 


Once off the phenobarbital, Karissa was an entirely different little girl. Her eyes were much brighter and she seemed so much more alert. Karissa remained seizure-free until August of 2006. 

Mark and I were awoken by Karissa in the early morning hours of August 20, 2006. She was making weird shrieking sounds. I was terrified. We weren't sure what was going on. There was nothing we could do to get her to stop. It didn't appear as if she was having a seizure. It looked more like a night terror. Regardless, we took her to the ER. As it turns out, the seizures were back. Another 3 night stay in the hospital, a battery of tests and a new round of medications, phenobarbital and keppra. We were informed by the neurologist that keppra may induce seizures. Great.


The meds worked for about a week and then the seizures started up again. We were back in the hospital. Another 3 night stay, more tests, all of which came back normal and the keppra was stopped and depakene and topamax were added in addition to the phenobarbital. The diagnosis was now Partial Complex Seizures of the Meso-Temporal Lobe. Over the course of the next few months, Karissa's medication regimen changed. Eventually, she was on topamax and trileptal and remained on these two meds for the rest of her life.
 

September 2, 2006 ~ 3rd hospitalization ~ 18 months old

Karissa was not given the diagnosis of Epilepsy until April 2007. In order to get a diagnosis of epilepsy, one has to have an abnormal EEG which occurs during a seizure. Karissa had already had 2 or 3 EEG's, one of which was done when she was 2 weeks old. The problem was that Karissa never had a seizure during any of the EEG's that were performed.


I remember being quite frustrated with the neurologist. I wanted to know more about what was happening with my daughter, what was going on in her brain that was causing her to have seizures and global developmental delay. I clearly remember the doctor saying that a 24 hour (or longer) EEG could be done but that would require her to be hospitalized and monitored and require us going into L.A.  He didn't seem willing or aggressive enough to explore that option. That is when we made the decision to change Karissa's neurologist.


The new neurologist was great. We made an appointment, drove into L.A., saw the doctor and she scheduled the EEG for later that week. On April 4, 2007, Karissa was admitted and the EEG monitoring was started. This involved weaning her off one of the meds so that she would have a seizure. She was in the hospital for only 2 nights this time!  About 30 hours or so into the monitoring,  Karissa started having a few seizures.  We learned that the seizure activity was in the right occipital and temporal lobes of her brain. This partly explained why Karissa's speech and language and memory was being effected.

April 2007 ~ 4th hospitalization ~ EEG monitoring ~ 24 months old 

After the EEG was done, her hair was so yucky from all the junk that was used to get the EGG leads to stick to her head.

Karissa's epilepsy effected her in so many ways, yet, she always had a huge smile on her face! She was an amazing little girl despite all of her challenges. She was also diagnosed with global developmental delay, meaning, she was delayed in most skills including gross motor, fine motor, cognitive and speech and language.  She stopped hitting her milestones. We had her enrolled in the Early Start Program in October of 2006. Karissa started receiving occupational therapy twice a week, physical therapy once a week, a weekly home visit from a special ed teacher and a mommy-and-me class once a week. We were provided with these services until she was 3 years of age. We also started her on the ketogenic diet in December of 2007. To read more about our journey on the ketogenic diet, go to posts "What? She has to eat that? The ketogenic diet part 1-4."

Two of Karissa's Early Start Teachers ~ March 28th, 2008

Karissa died in her sleep on Tuesday July 8th, 2008 of a seizure. An autopsy was done and nothing was found to indicate the cause of death. It was believed that the cause of death was SUDEP - Sudden Unexplained Death in Epilepsy.

Sunday July 20, 2008, a memorial was held for Karissa. It was beautiful. Over several hundred people were present at the service. It was amazing to see all the people that Karissa had an impact on during her very short time on Earth. On August 30, 2008, Karissa's ashes were scattered over the ocean.

As I look back on the few days before her death, there are a few things I am thankful for. We were on vacation the week before Karissa died. I am so thankful that we had that time to spend together as a family.  Another blessing was that on the last Thursday before Karissa died, she said to me, with perfect clarity, "momma it hurts me, I love you." This had such an impact on me, especially now, because at 3 1/2 years old, Karissa could not talk. She could say only a few words and mainly could only babble. So, to hear her say those words was amazing and a precious gift. I feel that it was God's way of preparing me for something that I believe He knew was going to take place even before Karissa was born.

The night before she died, I prayed that Jesus would heal my baby girl, that he would take away her seizures so that she wouldn't have to be in pain any longer. I prayed that He would give me continued patience and strength for the road ahead and that He would continue to be with Mark and I as we struggled with the many challenges of having a child with special needs. I have heard it said many times before that God answers prayers, just not always in the way we want or hope.

Thursday July 3rd, 2008 ~ Vacation

Not a day goes by where I do not think of my sweet little girl. The only thing that brings a smile to my face is to know that she is completely healed and will never suffer a seizure ever again. But, more importantly is the hope and assurance that I will be reunited with my daughter one day.

SERVICES DENIED. EPILEPSY NOT A QUALIFYING CONDITION.

Up to the age of 3, Karissa was part of the Early Start Program, a program which provides various services to children with special needs. Through this program, Karissa was able to receive occupational therapy twice a week, physical therapy once a week and speech therapy. She was also a part of a once-a-week mommy and me class as well as getting a home visit from a special ed teacher every week.

The Early Start Program is an amazing program, especially for those that may not have insurance or cannot pay for services. We have wonderful insurance that does provide these services, however, they were not able to meet Karissa's needs for weekly, or even twice weekly services, which was one the reasons for enrolling Karissa in the Early Start Program.

As Karissa's third birthday was rapidly approaching, I was starting to become frantic in trying to figure out what we were going to do. Once a child turns 3, all services provided by Early Start are stopped and the child is then transitioned out of the Early Start Program and into the school district. While we were still able to get OT and PT through our insurance, Karissa was only able to be seen once a month, if we were lucky.

The school district only provided speech therapy in a group, which would have been completely useless for Karissa. They also wouldn't provide OT for reasons that are still completely unknown to me and wouldn't provide PT until a child turns 5. HUH? Are you kidding me? I was ready to go to battle with the school district once Karissa started back in the fall. Obviously, that never happened. Lucky for them because they would have had one angry parent on their hands. Actually, they already did, but I will save that for another post.

So, our only other option became getting services through CCS, California Children's Services. We submitted the paperwork and had the neurologist submit what was needed. The outcome?: SERVICES DENIED. EPILEPSY NOT A QUALIFYING CONDITION. Um, excuse me?

I got on the phone with the CCS people and they were so indifferent. I told them what services Karissa needed and that it had been well-documented that the services she was previously getting were helping her in her development. They had the documentation. They were clearly aware that the services she had been provided were helping her in her development. I remember the lady saying "Is your daughter autistic? Does she have Down's Syndrome? No? Ok, well, we can't provide your daughter with services then. Epilepsy is not enough of a diagnosis." At that point I was tempted to ask the MD to lie for us so Karissa could continue to receive services. 

What? So my child has to be autistic? Or have down's? Wait, are you even remotely aware that there are children I know with autism and down's that are functioning at a MUCH HIGHER LEVEL than Karissa? That they will continue to be provided with services for as long as needed (or not needed)? I know I probably shouldn't say it and will probably make some of my readers angry, but I really have a lot of animosity in regards to autism. I am trying really hard to keep my filter in check here, so I will stop with that.

Oh, and if you were wondering, Karissa's skills did indeed decline once services were stopped. Towards the last month of her life, we noticed that she wasn't able to walk as well and that her balance was off. It was heart-breaking to see.

Regardless of anything I have just said, I feel that part of the problem is a lack of education and awareness regarding a disease that can be debilitating, and in some cases, lead to death. It is hard to go to battle with people who happen to think that epilepsy is not a big deal. Or, with those that think that people with epilepsy are normal except that they may have a seizure from time-to-time. But can you really blame them? Sadly, they just don't know any better.

There is so much that needs to be done in regards to not only education and awareness, but research and finding new treatments, and even a cure. The disease's toll has been overlooked, and its research underfunded, far too long. And, allowing those with epilepsy to receive services that may help them have a better quality of life, while important, is just the tip of the iceberg.

"What? She has to eat that?" The Ketogenic Diet Part 3

The meeting:

So, here we go...beginning of December 2007 we officially started the diet. We met with the dietitian and one of the first things she made us agree upon was that we would commit to at least 3 months on the diet. Of course we agreed. We didn't just decide to put our child on a such a restrictive diet for the fun of it...we wanted to see results! As long as there were no side effects, we were in this for the long haul.

She gave us a wonderful computer program for calculating Karissa's diet. I will spare you the details, but basically, you put in the grams of fat, carbs and protein for a food item and it tells you how many grams of a specific food is allowed based on the prescribed ratio. Nice! She was started at a 1:1 ratio of fat to carbs and fat to protein which was gradually changed to a 4:1 ratio. What this meant was 4 grams of fat to 1 gram of carb and 1 gram of protein. Fluid was also restricted. We even had to avoid certain shampoos, lotions and toothpaste because they contained a nominal amount of sugar that could break ketosis. We also had to order a funky, chalky tasting (yes, I tasted it) vitamin supplement to prevent certain deficiencies that may be caused by the diet. Karissa DID NOT like the taste of it...who could blame her? I wouldn't want to swallow a chalky tasting drink either! But as always, she was a trooper!

The results:

By the time March rolled around, we thought we would be able to start weaning her off the meds. If I remember correctly, Karissa had to remain seizure-free for 3 months before we could start the weaning process. Not only had she had a few seizures, we also stopped the diet for one week (I don't recommend doing this) because we were curious to see if it was actually working. I was also getting frustrated with the diet and I wanted so badly to quit. So we did, for a week. Actually, I think it was more like 5 days.

So, was the diet working? Yes, indeed it was!! Even though is was for a short period of time, we noticed an immense change in her behavior once the diet was stopped. Karissa had a very difficult time concentrating on tasks and staying still long enough for us to work on activities, all of which improved once she was on the diet. On the diet, she was much more 'calm' as we would say. Off the diet, her behavior was noticeably different. That was very encouraging to us since we hadn't even started weaning her meds. If her behavior was different as a result of the diet with no medication changes, we couldn't even imagine what she would be like once the meds were weaned. That was exciting to us.

The challenges:

So, back on the plan we go. Yes, we had to start from the beginning but seeing the improvement in Karissa's behavior was worth it. The next 3 months were a bit of a struggle. After turning 3, Karissa transitioned out of the Early Start Program and into the school district. She started going to school every day for 3 hours. It was a special day class, meaning, it was for children with special needs. She was there from 10:50-1:50. That meant Karissa would need to bring her lunch to school.

I can't begin to tell explain how stressful this was for me. Dealing with Karissa's teacher and the aides was a challenge I didn't need. I don't know how many times I had to reiterate the reasons for putting Karissa on the diet. The teacher made me feel like a horrible person for having placed my child on such a strict regimen. I expected her to be supportive, but instead was judged. She would say things like "Karissa seemed so hungry all day" or "cant' we give her more food?" I know for a fact, that they did sneak her food on a few occasions because of the change, although very brief, in Karissa's behavior and the decrease in ketones in her urine. I was livid!!

I couldn't believe her attitude. First, she had no place to judge me. Second, you would have thought she would have understood, since she works with kids with special needs and it is her job to help them learn and help them catch-up if at all possible. I had to tell her time and time again that we had her on this diet with the goal of getting her off her meds with the hope that her learning and development would improve. She never quite understood. I knew that in the fall I would probably be looking into another program for Karissa. But unfortunately, that never happened.

Another challenge we had was traveling while on the diet. In February, we flew to Utah with my parents for a ski trip. I wonder what TSA thought of the ketogenic ice cream that I had packed in my suitcase. Luckily, we stayed in a huge condo so I prepared everything there, except for the ice cream of course.

The week before Karissa died, we were on vacation. I remember planning out and preparing all her meals. She ate 5 times a day. We brought 2 mini coolers full of Karissa's meal for the trip and asked to have a microwave in the room. There was already a refrigerator and freezer in the room. We were set. Planning and preparing her meals was so easy for me. Of course, being a registered dietitian didn't hurt either. It became a way of life. It became routine. It was a lot of work but again, well worth it...