From the begining...July 27th to today

The other day, my lovely cousin Laura called me from Costa Rica, and amidst the conversation, she suggested that I start a blog. She said that with everything going on with Eddy, it would be a helpful venue to let everyone know how Eddy was doing, and also blogging might be “therapeutic” for me. At the time I was such a wreck and could barely start a load of laundry without crying, so my initial reaction was “no way, I have no time or energy to do that,” but as the week went on and I thought about it more, I decided that, yes, I could start a blog, and, yes, it might indeed be helpful (for me and others) to write down everything that is going on.

So here I am. In this first “edition” (What do they call each separate entry in a blog? Post? Entry?), I’m just going to give you the run-down of what we’ve been going through with Eddy and his seizures…

The day before Eddy’s first birthday (July 27^th), he had his first seizure. We were sleeping in my bed (when Eddy wakes up around 4 or 5 in the morning, we bring him in bed with us to get some more sleep), and I had just woken up. I thought Eddy was about to stir, so I was watching him. Instead of waking up, though, Eddy started shaking/shivering, and then his eyes rolled to the back of his head. This lasted for about a minute, and immediately I knew that Eddy was having a seizure. Obviously, I freaked out and called Ed (my husband), and he rushed home from the bank, where he was taking out a check for our house (oh yeah, we were about to move to a new home in a few days!) Within 15 minutes of Eddy having his seizure, we were at the ER of Olean General Hospital. After lots of tests and a CT scan (which was normal), it was determined that Eddy had a tonic/clonic seizure (or grand mal seizure) and he was being taken by ambulance to Children’s Hospital of Buffalo. At the hospital, they basically said, “We don’t know why Eddy had the seizure, and we don’t start medication until at least the second seizure, so we are going to send you home and have you monitor him.” Eddy was back to himself and didn’t seem sick at all, and although we were terrified of what had happened, we took him home and tried to move on.

Things were “back to normal” for about two and a half weeks. Then, on August 13, Eddy had a second grand mal seizure. This one was also in the morning, around 6:20 am, but it was much worse than the first. It lasted between four and five minutes, and with Eddy still seizing, we ran out of the house, jumped in the car, and I held him on the way to the hospital (I know, not safe, but I was more worried about my baby having a seizure at the time!) I didn’t even grab my purse, or the diaper bag, and Ed and I were both in our pajamas. At the hospital, I immediately said that we wanted to be transported by ambulance to Children’s (because last time we wasted a good six hours in the Olean ER before they sent us to Children’s), and they said they would get him in an ambulance as soon as possible but first they had to make sure he was stable. It turns out Eddy’s oxygen was pretty low, and as they put an oxygen mask on my little man, I just sobbed and sobbed and wondered why the heck my sweet baby boy had to go through all of this. The ER doctor was great, and he had Eddy and me in an ambulance on the way to Children’s within an hour. At Children’s, we met with a pediatric neurologist (who we actually had an appointment with the following day about Eddy’s first seizure but this kind of took that appointment’s place). Luckily, Ed and I had remembered to take a video of Eddy’s seizure this time (as we were instructed to at our first ER visit), and the doctor immediately said that Eddy had a grand mal seizure and needed to be put on seizure medication. At this point it was determined that Eddy had a “seizure disorder” but we had no idea what the cause was. He was put on the lowest dose of Keppra (1 ml, twice a day), and we were sent home.

So we go home from the hospital with our sweet, happy, seemingly healthy little 12 and a half month old boy, but now we’re extremely worried because our “healthy” little boy has been diagnosed with a seizure disorder. At this point, I turn into “crazy advocate mommy”, calling the pediatric neurology office almost daily, doing an insane amount of internet research (which is not ideal, as you probably know), and staring at my baby when he is sleeping constantly (because both seizures happened when he was sleeping). Eddy also started the gamut of testing that would hopefully shed some light on what the heck was going on with him. In mid-August he had an EEG (which was normal, but basically that just means he didn’t have a seizure in the hour he was hooked up to the monitors), an MRI, which he had to be sedated for, and lots of bloodwork to test for metabolic disorders. The MRI turned out to be normal, which was great because that meant that there were no “structural” problems with Eddy’s brain (like layers that did not form correctly, etc.) It took several weeks to get the metabolic bloodwork results back, but thankfully, that, too, came back normal.

Two and a half weeks after his second seizure, Eddy had yet another seizure. Except this time, it was 9:15 at night, Eddy had just fallen asleep, and the seizure was different from the previous two. Instead of him shaking and his eyes rolling to the back of his head, he just sat up in bed, became very rigid, and his eyes opened really widely. The whole thing only lasted about 5-10 seconds, but Eddy was completely out of it for at least twenty minutes. We called the pediatric neurology office and they paged the neurologist on call, who said that because it was a different kind of seizure, we should call an ambulance. At the ER in Olean, Eddy had two more of these “seizures,” but they only lasted a few seconds each. We knew that Eddy was going to be taken to Buffalo Children’s again (and we wanted him to be admitted so that they could do a long-term EEG), but we had quite the surprise when the Mercy Flight crew showed up to take Eddy off in the helicopter. As you can probably imagine, I was not a happy mother at that point. 1.) The ER Doctor did not ask Ed or I if we wanted Eddy to go in the helicopter, nor did he even mention he was going to. 2.) I could not ride with Eddy and I was so worried that he would be tramautized for life if he woke up and found himself without anyone he knew flying in a loud helicopter. 3.) Eddy was stable at this point, just sleeping because it was 1 am, and he absolutely did not need to be taken by helicopter! But after voicing our concerns to the ER doctor, he said that he would cancel the helicopter and call the ambulance from Children’s, but we would have to wait several more hours for them to even get there. So we decided to let Eddy go by himself in the helicopter and we left the hospital to get a head start up there. As I was driving, I looked in the sky and saw the helicopter that my baby was in flying ahead of us and just sobbed, unable to understand why any of this was happening.

At 6 am, Eddy was finally admitted to the 8^th floor of the hospital and hooked up to a long-term EEG monitor. Ed and I stayed with him in the hospital and slept in the horrible pull out “bed chairs.” After Eddy was hooked up to the monitors for about 24 hours, he had another grand mal seizure when he was napping in the chair with me around 9:30 in the morning. After he was taken off the EEG monitors, after about 30 hours, the neurologist on call (along with all of the neurology residents…because it’s a teaching hospital, there’s always a cohort of doctors in the room) said that, other than the brief grand mal seizure (which lasted two minutes according to Eddy’s brain waves on the EEG), everything else “looked great.” She said that Eddy’s brain waves seemed to be ok, and once we figured out the correct dosage/seizure medication, she was confident that he would be just fine. Obviously, this was comforting to hear, and we hoped it was true, but we were still very worried.

The next morning, we met Eddy’s new neurologist, Dr. Weinstock, who is extremely respected, accredited, and experienced as a pediatric neurologist. He is kind of the “guru” for pediatric seizures at Buffalo Children’s, and we were very lucky that he was now Eddy’s neurologist. At our first meeting, Dr. Weinstock said that he studied Eddy’s EEG results, and most of the EEG looked normal, but because he had another seizure, we had to increase the dosage of his Keppra to more than double what he was currently taking. He also mentioned that he saw something very brief on the EEG, and he wasn't sure exactly what it was, but we would keep an eye on it. That afternoon, which was Saturday, Eddy was discharged from the hospital after three long days.

At home, Ed and I were on edge. We hated being in the hospital and didn’t want to have to go back. We didn’t know if Eddy’s seizure medication increase would help, and we hated not knowing if he was going to have a seizure. At this point, he was sleeping in our bed full-time (and he was pretty much the only one sleeping.) For the past several weeks, when Eddy was sleeping, he would be very restless…twitchy, tossing and turning, jerking, flailing. It was unnerving and it had definitely gotten much worse since the seizures started. Every night I would watch him twitching and know that that had something to do with seizures. I had read about “infantile spasms,” which are horrible seizures that typically start in smaller babies, 3 months to 8 months, and if they cannot be stopped, they have horrible consequences (mental retardation is what jumped out to me in all of the countless websites I read about them.). I continued calling the pediatric neurology office, and I sent a couple of videos that I took of Eddy twitching to a neurology nurse, but she seemed to think it was “typical baby behavior.” I read in a lot of places that it’s normal for babies and toddlers to twitch in their sleep because the central nervous system is developing. This didn’t seem normal though.

The following Wednesday, September 5, (so now we’re almost up to present day! Bear with me, I’m almost done. J ) Eddy had another grand mal seizure and we were back in the hospital for another long-term EEG. After about 48 hours hooked up to the monitors, (and four tonic seizures, which are short, sudden seizures where his body goes rigid), it was determined that Eddy’s seizure activity was starting to look like infantile spasms. Because we had done so much research, and knew how devastating these seizures could be, I burst into tears as soon as I heard the words “infantile spasms.” It was decided by the whole team of pediatric neurologists that Eddy would start on ACTH the following day. ACTH is an extreme intense steroid treatment where Eddy would be given shots of steroids every day. After reading all of the side effects that commonly occur with ACTH (and serious side effects are quite common), we were so nervous and did not want to start Eddy on this treatment,  but if all of the pediatric neurologists at Buffalo Children’s Hospital agreed that this was the best course of action, we were not going to question them. They did tons of testing to make sure Eddy was healthy because the treatment was going to suppress his immune system and any infection that was already in his system could kill him. After lots of bloodwork, neurologists looking in his ears to make sure he didn’t have an ear infection, a chest xray, and a catheter insertion for a urine culture, Eddy was determined to be “healthy” (other than, of course, having seizures and infantile spasms). Shortly before they were going to start the treatment, my husband, Ed, started to feel really sick and quickly got a 101.5 degree fever. Everything was put on hold because he had had contact with Eddy that morning, and just in case he had transferred it to Eddy, we had to wait to again make sure Eddy was healthy.

So that leads us to present day. We have been home from the hospital for a week and a half now, and Eddy has not had a seizure since we left the hospital. He was put on another drug, Klonopin, to help lessen his infantile spasms (which, again, only happen when he is sleeping and just look like a quick startle reflex.) He is sleeping much more soundly for the most part, although he still has some "twitches" in his sleep. Klonopin doesn’t actually cure infantile spasms so we are trying not to get our hopes up that he no longer has them, but we are cautiously, and optimistically, waiting on his next long-term EEG, which will be in two weeks. If his infantile spasms are better, it really will be a miracle.  So all we can do now is wait and pray.

We always knew we had great people in our lives, but this experience has showed us just how wonderful our friends and family are. We are overwhelmed by the support, concern, love, and thoughtfulness shown to Eddy and us. Thank you so much. We know this is probably going to be a long, stressful road, but we will be able to get through it with everyone’s prayers. I know that God is listening to them.