Tuesday, July 10, 2012
I'm pretty sure I'm stuck right in the middle of one of the most life-changing weeks of my life. It's right up there with getting married and having babies only on the other side of the spectrum. I'm not really that excited about the changes that are taking place. But, since this week has such potential to completely alter how I live my life I want to document what's happening. As rough as this week has been (so far), I want to remember it and I know alot of people who probably have alot of questions about what's happening so here goes....
It all started just over a month ago. I was laying, face down, on the chiropractors table while Levi sat in the stroller playing with a toy. At one point, my chiropractor stopped and asked me to get up and look at my son. So, I did. She was concerned because he had started jerking forward, as though he were falling asleep with his eyes open, every twenty to thirty seconds. I only saw a couple of small jerks and Levi responded well to me when I approached him so I attributed it to a sleepy baby. Levi had his eighteen month appointment just a couple of weeks later so, with some tips from my mom (a nurse), I watched for any other seizure-type symptoms.
I did see a couple of minor things that were concerning so I made sure to mention it to his doctor who said to keep watching and call if it got worse. One week and one day later - this past Saturday - Levi had another episode. A big one. At about 10:15am, Levi started trembling and then repeating the jerking motion that had occurred at the chiropractor. One single (falling asleep with his eyes open-like) jerk every ten to fifteen seconds. We grabbed the camera and taped the episode. It lasted for about 3 minutes, but after it was over he was almost completely unresponsive and just slept for almost an hour. Our dear doctor friend, Roger Crouse, told us if it happened again to go to the E.R., but otherwise make an appointment with a neurologist.
It happened again.
That evening just before 6:00pm, he did the same thing. We briefly contemplated waiting for an appointment, but THANK GOD we didn't. Jeremiah, my mom and I took him in to the E.R. where he had yet another episode. Because he had no known history of seizures, they felt we should stay over night, but gave us the option to go to Mayo Clinic hospital an hour and a half away in Rochester, MN. They have a pediatric neurology team. So, we packed up, made the drive to Mayo Clinic and after check-in and check-up's we finally made it to bed around 4:00am.
On Sunday we waited. And waited. And, yes, we waited some more. The neurologists were wanting to see an episode and they just weren't. Sometime in the mid-afternoon, the pediatrician came in and said since Levi hadn't had any more episodes, they had decided to release him and schedule some follow-up appointments for later in the week. I was so frustrated because I KNEW something wasn't right, but they weren't convinced. As the pediatrician left the room I said a little prayer, "God, if we need to be here, please let them see what they need to see!" I hadn't even completely finished the thought when Levi started another episode. This episode was a smaller one, but Levi was very disoriented afterward. The doctor hadn't been out for even a minute. We were able to get a nurse who witnessed the end of it.
Well, I stayed. Jeremiah has a huge project due on Thursday so he had to go home so he could go to work. Plus, we wanted one of us to be with Toby since we'd already been gone for an entire day.
The neurology team scheduled an EEG for Monday morning. EEG's are a way of measuring a person's brainwaves in hopes of catching any unusual activity. EEG's can last anywhere from one hour to five days, and are a NIGHTMARE for an eighteen month old. They had to literally super glue thirty-two small, sequin-sized probes to his head. The process went something like this: Measure head, make thirty-two marks on head, put super glue and probe on head, put a little straw type thing that blows air on the probe to dry the glue, repeat until all thirty-two probes are glued on, put a blunt, needle sized object inside of each probe and scrape skin off of head to increase electrical connectivity, fill each probe with some weird electrical gel formula, fill each probe with lotion, wrap head in gauze, cover in another layer of a gauze-like stocking cap, add lots of tape and hope it works. To say the least, Levi hated it.
Mom had come over that morning so she had to help us hold my baby down for almost one hour of torture. He screamed and thrashed the entire time until it threw him into another episode. Yes! The probes were on! He had an episode! They got it recorded!! Kind of. But, it wasn't a good enough recording since they were still wrapping his head when it happened which distorted the reading, Sooooooo...... we waited some more. We did get to come back to our room, but Levi can't leave until the observation is over because he's hardwired to the wall and they're video taping his every move. The neurologists said we had to wait until he had another episode.
In the mean time, Monday morning's episode left Levi even more disoriented than before. His responses were very minimal and very slow while he was awake and then he slept for almost four hours afterward. He was fine after he awoke. But, we thought that maybe his slowness and disorientation would leave answers on the EEG for the doctors. Nope. So, we stayed another night, waiting for another episode; hoping it would happen; hoping it wouldn't happen. Ever again.
It happened. He had another episode yesterday morning and the neurology team was able to get a good reading from it. Levi's response to this episode was probably the hardest thing I've had to deal with so far. He had a few minutes of very slow, disconnected mental response. And then, at one point, he was looking at me and instantly fell asleep. He slept for almost five hours. From 12:45 until some time between 5:00 and 6:00. But, it was a DEEP, HARD sleep. He wouldn't wake up for anything. He didn't even stir. At all. I'd been doing pretty well until this point, but I couldn't help but worry he would never wake up. I've never seen anybody sleep so hard.
It was during this time that the neurologist in charge of our case came in with the diagnosis - Infantile spasms. Have you ever wished your kid had epilepsy? I have. Infantile spasms were the last thing I wanted to hear. Epilepsy is usually pretty easily managed, kids frequently grow out of it, and the seizures don't tend to be dangerous. Infantile spasms can be more difficult to manage, kids can grow out of them (they didn't want us to get our hopes up, though), but the seizures can be dangerous. Most children diagnosed with infantile spasms are developmentally delayed because of their seizures. The good news is that we caught it early so there's a chance that if we are able to manage Levi's seizures he may not experience any developmental issues, but again, the neurologist didn't want to give us false hope. (Something to be praying for!) The other good news is that sometimes infantile spasms can be caused simply by a deficiency of vitamin B6 so Levi was immediately treated with a high dose of vitamin B6. If this is the cause for his seizures he may just need to have his B6 monitored and he could never have any more issues ever again. It could start working immediately, but it might also take a few days. PLEASE PLEASE PLEASE, I can't say it enough, PLEASE pray that this is the case. If a vitamin deficiency isn't the cause, the treatment and management can become much more complicated. Depending on the cause, we'd have three options: 1. One medication that may or may not do a good job managing the seizures 2. another medication that frequently causes peripheral blindness that tends to spread 3. Brain surgery.
So, you see why I'm pleading with you to pray for a vitamin deficiency! Levi will have an MRI today (Wednesday) as well as a lumbar puncture, urine test, and blood tests so doctors can try to find the cause of these seizures. Once they find the cause it could take another day or two to get treatment managed. I have a feeling that whatever treatment is necessary, even brain surgery, they'll want to do it as soon as possible as his seizures are taking more out of him every time. But, we just don't know what will happen. I could be wrong.
So, now you know the details. As I read over them I'm amazed at the great measure of peace I have. I do have my moments, but I'm able to have a short cry and move on. God gave me Levi. God has a plan for his life and I know that He will carry it out. I'm not freaking out. I'm not angry. I'm not scared. In fact, at my worst moments, when I start to cry, I'm overwhelmed with thankfulness. I know that God's in charge and I'm not (thanks Wendell Nickerson!!). He's got it covered, whatever happens, and I'm so thankful for that. I'm thankful for Levi, whether he's Levi with seizures or Levi without seizures (preferably without:). I'm thankful that I have not been able to keep up with the texts and calls of everyone who is praying for us. I'm thankful that no matter what happens, no matter how hard this next season of life could be God is still God - Comforter, Prince of Peace, Immanuel, Father, friend. He really is all I need.
Thank you everyone who is praying. Thanks for the encouraging calls, texts and emails. Thank you Lord that you WILL have your way and that you are holding us in your hands.
I'll keep you posted....
Here are a couple of songs that have carried me through: