4 years....such a long time, and yet not so long ago.
It was August of 2010 when Evan had his first series of seizures. At that time, we had no idea that is what it was. We were camping on a hot weekend with some friends. When we were out on the water he said he didn't feel good and was acting very strange. Talking quietly, using few words, and was slow to respond to us. His gaze was distant and sent a chill through us despite the 90+ degree weather. We thought he was dehydrated, so got him water and Gatorade. He seemed to perk up and be feeling better, but that only lasted for a few hours before he went into another spell. This one was even worse as he barely responded at all, and then wasn't responding. Only his eyes would slightly move to look towards a light. Terrified, we experienced our first ambulance ride as we were rushed to the hospital. I will never forget the feelings I had that day. Absolutely overcome with helplessness and fear. We were terrified as we couldn't imagine what was wrong. Fearful of the worst case scenario, that we might lose our lively little 2-year old. What we now know were actually seizures had lasted 30-40+ minutes each.
After that ER visit, we left with a diagnosis of "heat exhaustion complicated by early stage pneumonia and ear infection". Little did we know that was not what was truly happening in his developing brain. A couple of months later, at home, he had another similar episode. At that point we KNEW something else was going on. At the ER that time is where we first heard the word "epilepsy" in relation to Evan. Its hard to explain the feeling when that is spoken to you. I imagine it is similar to what people feel when given other life-altering diagnoses. Shock, denial, fear, and confusion are all wrapped up in an odd ball that sits solidly, yet moves between your stomach and your throat as your mind races and tries to make sense of it all.
A referral was made, and thus started the process of making numerous phone calls and many appointments with various specialists in hopes of an answer. Ok, I'll be honest, I was hopeful they would find nothing wrong and decide it was really nothing and he was just a healthy 2 1/2 year old. But the logical side of me kept reminding my heart...I knew it had to be something. Nothing wouldn't cause what my baby was experiencing.
The EEG & MRI had to be scheduled before the appointment with the neurologist. I took some pretty serious notes and documented every phone call so I could recall information if and when needed for whichever medical professional. In retrospect, it was what I was familiar with doing. I did it at work all the time. That familiarity felt good, and it was something I could feel like I was in control of. Lord knows I didn't feel like I was in control of a whole lot at that point in time. So the familiarity was quite welcome.
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| Playground a few weeks before diagnosis |
Before the EEG or MRI appointment could happen, Evan had another "episode". This one was caught on video (thanks to the ease of smartphones) as suggested by one of the medical professionals. We had been told, if he had an "episode" before he could get in for his appointments, to take him to the same hospital where the neurologist was and have him admitted from the ER, so that is what we did. While in the waiting room, he did begin to come around, but what we saw then terrified us. He would smile, but with just one side of his mouth. One eye was sagging. Our hearts sank even further. Had he had a stroke??? It was a terrifying whirlwind of events where there were tests, a lot of waiting for answers, and terms that I'm not sure I was ready to hear. During the 3 days we were there, Evan had bloodwork and an EEG. When the neurologist came in, I remember the room being somewhat dark as I was trying to get Evan to rest as he snuggled on my lap. She sat in a chair across from me and delivered the news...the EEG confirmed seizure activity and, based on everything she saw and was reported by us, gave him the diagnosis of Complex-Partial Non-Convulsive Status Epilepticus (CP NCSE). She discussed treatments to help control his epilepsy, but I really don't remember much after she confirmed he was having seizures. I just couldn't imagine! After she left the room, I remember just staring at my boy and thinking HOW? WHY? and beginning to mourn his "normal" childhood. Wondering if he would ever be able to have a "normal" life. My husband wasn't there when she delivered this news to me. Looking back I can't remember if he had gone to grab some dinner, or gone home to clean up and gather some belongings for me, or what. I do remember feeling so alone, so separated. At that time I had no idea how many children were affected by epilepsy, and no real information about a prognosis for Evan. What did all this mean for him? What did all this mean for us? The only thing I could think to do was put my feelings on paper in a way familiar to me (The Empty Chair).
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| Evan on the last day of his stay at the hospital. He wore a mitt (ok, a diaper made into a sort-of boxing glove) to conceal his IV line. Out of sight, out of mind is the name of the game for an active 2 1/2 year old! |
POST-DIAGNOSIS:
When we left the hospital, we left with a prescription for Trileptal.
About a week later, Evan had the MRI. With every test was new fears. The MRI would reveal if there was a deformity or abnormality in the brain. Thankfully none was found! This was a relief, but not an answer as to what was causing my baby boy to have seizures.
That is something that we have sort of gotten used to...no real answers. It is EXTREMELY frustrating, but it is the reality. The brain is so complex. No two are wired the same. No two seem to respond to any medication in the same way. We remind ourselves, there is a reason that medical clinics are referred to as "practices". It helps, but it doesn't take away the frustration we experience with every seizure he has. Our neurologist also tried to help us see that not having a clear cut answer is actually a good thing. It means that he *may* be one of the kids that eventually outgrows his seizures. As much as we hope for that, as much as we see what the neurologist calls "positive signs", and as hopeful as that helps us to be, epilepsy is still frustrating.
TRILEPTAL to LAMICTAL:
At first the Trileptal seemed to work. He went 8 months without a seizure and we were oh so hopeful! After that, he was having seizures every 4-6 weeks, and sometimes not even hitting 4 weeks. Each seizure he had lasted over 5 minutes, requiring us to administer diazepam/Diastat to stop them. He had a second EEG to test for photosensitivity (more fears!). Thankfully that test came back negative, BUT he was still having seizures...so it was a small comfort. After a while, we were not satisfied with the seizure "control" he was getting with the Trileptal. It didn't seem to really make a difference from what we could see. His seizure activity was similar to the episodes we saw pre-diagnosis. The Diastat was really what was "controlling" his seizures at that point. The doctor agreed, and we started to titrate him off the Trileptal and at the same time titrate him ON to Lamictal. When Evan fully titrated off of Trileptal, it was like a light switch turned on in him. Even though he had been basically normally developing as far as we could tell, he was behind with his speech development. In the two weeks after he was off Trileptal, his speech doubled, and maybe even TRIPLED!! It was AMAZING...and yet we felt terrible!! He had been on Trileptal for over a year! How must he have felt on the medication? He was like a different kid, developmentally. Guilt set in, but also thankfulness that he was more himself. Evan still is behind in his speech, but has continued to make great improvements nearly daily with the dedicated help of his speech therapists.
We always wondered (and still do as he is still on Lamictal) how much of an impact seizure medication is having on who Evan really is. Because he has been on medication since he was 2 1/2 years old....we only know "medicated Evan". I'm not sure I really know "just Evan", yet....but I am hopeful that someday I will meet him!
This story does continue....Please see Our M.A.D. Story to find out more.
My son was recently diagnosed intractable epilepsy, he has tonic-clonic and atonic seizures. His seizures are very hard to control with medication. Right now, he is on 3 (trileptal, onfi, and keppra) twice a day. I don't think you could have put into words any better on how exactly I feel/have felt. Mourning the loss of your "healthy" child and accepting a life of medication, and possibly brain surgery. My biggest fear is not knowing who Kane really is, like you said, we don't really know Kane without the medicine (he is almost 2). I appreicated blogs like yours. We have been very vocal about Kane's diagnosis and have a lot of support but just hearing people's stories, moms that have gone through the exact thing, is comforting. I feel like I'm not the only one and that other people are getting through it to. We just got Kane's diet plan in the mail to start the MAD...it's overwhelming but I appreciate your suggestions. Thank you!
ReplyDeleteMy son was diagnosed with a rare form absence status epilepsy. His seizures show no symptoms until the seizure has lasted for hours! The only warning we had was he started acting only tired at first then gradually he started acting confused and from there for 24 hours he didn't know what year it was, where he went to school, or even what grade he was in etc. his motors skills were perfect and he talked to everyone normal the entire time, he just couldn't answer certain questions. The hospital kept him overnight and gave him fluids and in 24 hours he slowly started remembering and they said he was good and sent us home. We know now that he was having a constant seizure the ENTIRE TIME of his confusion! Almost 3 months later he begins having the same symptoms when I woke him up for his 2nd day of school. we are sent for an EEG, which revealed at 10 am he was actually having what the neurologist referred to as the worst EEG he had seen) we then were sent to a different children's hospital where they observed him until 8:00pm, all this time my son passes every test, he is talking and his motor skills are completely normal! They finally begin his EEG around 9:00pm. It reveals he is still in seizure! They are blown away. Say they have never seen an absence case like his and they quickly gave him a big dose of adavan which immediately stops the seizure and he is able to regain his memory immediately. Does anyone have a child who has these same symptoms? His neuro doctor ordered a brain glucose test, but when we went for a follow up last week they said the test had been canceled and they had no idea what happened? When I asked if they were going to draw his blood and re do the test, they said that his medicine was controlling the seizures so far so they didn't feel the need to do the test! I need advice and some direction. I searched further; visited epilepsy websites, blogs. I find info about someone having the same symptoms. I was really determined. Fortunately for me, I stumbled on a testimony of someone who had epilepsy for several years and was cured through herbal medication. I read awesome stories of people whose condition were worse . But due to numerous testimonies. I was more than willing to try it. I contacted the doctor Gabriel, and my son used the Nectar herbs. It became a miracle for my son free from rare form absence status epilepsy within 3 months. The Nectar medicine worked without any trace of side effects on my son. totally cure. I decided to share my son story to tell people out there, that there is a hope for those with epilepsy using nectar medicine and anyone who suffers from seizures can be cured. Email dr.gabriel474@gmail.com
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