Hope, results, discouragement, and thankfulness

It’s amazing how much your outlook can change in a few days.  Three days ago, Ed and I were upset, scared, nervous, pessimistic…take any negative adjective and we were pretty much feeling it.  After having the two seizures last Saturday morning, Eddy started getting very twitchy in his sleep. He tossed and turned all throughout the night on Tuesday and Wednesday, jerking, twitching, doing his “startle reflex" about fifty times, and Ed and I were very worried that the infantile spasms had gotten worse. He also had another short 10-15 second seizure Thursday morning after moving around literally the entire night. His neurologist had told us (when we called last Saturday to tell him about the two seizures Eddy had) to let him know if he had any more episodes or “bad nights,” and we would move up his EEG.  So Thursday at 9 am, as soon as the pediatric neurology office opened, I called and (of course) started crying to the nurse I spoke with. She was very kind and empathetic, and when we got off the phone she told me to hang tight and she would call me right back.

45 minutes later the nurse called back and said, “I got you a bed in the long-term monitoring unit, get here as soon as you can.” I answered, “Today??” I was hoping to get the EEG moved from next Wednesday to Sunday and I wasn’t even considering the possibility of getting in that day. She said, “Yes, today, I pulled some strings to get Eddy in here, so please tell me you can make it!” She said that he would be hooked up to the EEG as soon as we got there and monitored until 10 am the next day (Friday). Depending on the results of the EEG, either we would leave then, or he would be admitted and started on ACTH. (So she instructed us to pack for at least four or five days.) I called my dad, who was just leaving a dentist appointment, and he came over and watched Eddy while I packed. We were out the door within half an hour, picked up my mom from her work, and were up to Buffalo Children’s within two hours. Everyone in the Epilepsy Monitoring Unit greeted us when we walked in and said, “Your room is right there.” We didn’t even need to tell them his name; they know us by now.

Because Eddy has had three seizures and lots of (what appeared to be) spasms in the past week, we were really worried and preparing for the worst. We knew that three weeks prior, Eddy had had infantile spasms and what was “reminiscent of hypsarrhythmia” (the chaotic brain waves that show infantile spasms are present and eventually cause mental retardation if it can’t be stopped). We also knew that the Klonopin that they started Eddy on did not cure infantile spasms or hypsarrhythmia. So we were betting that Eddy would be starting ACTH.

At 10 am Friday morning, I was a nervous wreck. Ed had to teach so my parents drove up in the morning to be there when we got the news. Around 11 am, the pediatric neurologist on call came in and told us that the EEG showed some abnormal brain activity, but it didn’t look like infantile spasms!! When Eddy is hooked up to the EEG, we are supposed to press this button every time we think he’s having a seizure or a spasm. I pressed it about ten times when he was sleeping, and it turns out that none of his crazy jerky movements or startle reflexes were spasms. This was amazing news. The fact that he had infantile spasms three weeks ago and didn’t have them now was incredible. Infantile spasms don’t just go away, and the fact that they are better without anything more than Klonopin is truly a miracle. Ed and I were bracing ourselves for the worst and planning on staying in the hospital all week. We couldn’t believe it when we heard his spasms were better.

When my parents and I were celebrating about the infantile spasms news, the doctor reminded us  once again that Eddy does have ”high-voltage”, abnormal brain wave spikes, and they don’t know what they are. This is not good news, but considering what we thought the outcome would be, we were still going to celebrate. The strange thing is that every time Eddy had an abnormal spike on the EEG, he was completely still and sleeping. When I asked about all the twitches and startle reflexes, she said that it was “normal baby movements.” It’s definitely not normal, but I’m not going to argue if it isn’t infantile spasms!

When we asked about the next step, she said that he should come back in Sunday for a longer EEG, from Sunday to maybe even Friday. They would take Eddy off of his seizure meds to see if they can figure out something more about these abnormal brain wave spikes. The thought of our 14 month old, who is now constantly on the move, hooked up to the EEG and unable to move for five nights was not something we were looking forward to, but we were prepared to do it if it could help Eddy.

A few minutes after the neurologist on call left, Dr. Weinstock, Eddy’s neurologist, came in and said basically the same thing that the previous doctor said - Eddy’s EEG looked better than it had three weeks ago, he doesn’t have any hypsarrhythmia or infantile spasms, but he does still have some abnormal brain waves/spikes, and they aren’t entirely sure what they are. He did say that we aren’t out of the woods yet in terms of the infantile spasms, because they could come back, but right now the spasms are gone. His approach for the next step was a bit different than the other doctor’s, though. He said that we can keep our long-term EEG appointment next Wednesday, and he doesn’t want to take Eddy off of his medications for the EEG. He said that the medicine is starting to control the seizures, he knows that if we take Eddy off the medicine he will have lots of seizures, and he doesn’t think that this will be worth it to potentially find out what the abnormal brain waves are. I understand the viewpoints of both doctors, and I respect Dr. Weinstock tremendously, so we decided to go ahead with the EEG on Wednesday, with Eddy remaining on his medication. Having a longer, 48-hour EEG will hopefully shed some more light on what is going on with Eddy’s brain waves. The EEG will be over Friday, which is my birthday, so I’m hoping for a birthday present of more good news and no infantile spasms!

We received another piece of good news on Thursday evening while at Children’s. Dr. Robinson, the genetics doctor, called me and said that Eddy’s microarray came back normal, which means that he probably doesn’t have a genetic disorder!!!! I cannot tell you how relieved I was to hear this news! As you know if you read my previous entry, I had completely convinced myself that Eddy had a genetic disorder. In fact, I think I had convinced several people, including my mom, that Eddy had a genetic disorder.  So this news was so great to hear! In addition to being relieved about Eddy, we were also very relieved because we want to have more children. Now we don’t have to worry as much when we are ready to go ahead planning for another child. I cannot tell you what a relief this is. (Yes, I know, “relief” is overused in this paragraph, but there isn’t a synonym that adequately describes what we felt!)

I really feel that God is present, and has been present the whole time, in this situation. Even when I was sad and scared and mad at God a few days ago (for “not answering my prayers!”), I still felt that He was with us, and that He was in control. This situation has made me appreciate everything I have a lot more than I used to. It’s easy to take things for granted when everything is going well.  

As I wrote that last sentence a few hours ago, I looked at the baby monitor (Eddy was taking an afternoon nap), and I saw an odd, rigid arm movement. I ran upstairs and saw that he was having a grand mal seizure that lasted somewhere between two and three minutes. Thank God I looked at the monitor right at that instant. I do still feel that God is in control despite everything. I may not understand why He is making us go through it, but I do believe that He is in control.

So…to come to some kind of end here, I’m going to go back to where I started this entry. “It’s amazing how much your outlook can change in a few days.” Or a few hours. Or a few minutes. I started this blog feeling hopeful, and currently I’m feeling discouraged. But I know that I will feel hopeful again, hopefully soon (ha, pun intended.) I just have to accept that this is a rollercoaster, know that Eddy has great doctors, have faith, and be grateful for all of the wonderful things that we do have. We have so many great people in our lives, and we are so thankful for all of your support (I can't reiterate this enough - thank you!!)

Eddy is such a tremendous blessing and inspiration for us, and no matter what happens, we are so lucky to have him in our lives.

A few things I was just thinking of while putting Eddy to sleep...

Am I ever going to sleep again? I mean, really sleep. Not for fifteen minutes to an hour at a time. My nights are spent fluctuating between all-consuming worry, where I constantly stare at the baby video monitor to see if he is moving, to trying to put all of my trust in God and let him take the worry instead of me (although with the latter, I still tend to stare at the baby monitor, albeit not quite as often.) I have never been much of a worrier so this is new to me...and I don't like it. I was feeling so much better about everything, then Eddy had another seizure.

It had been 17 marvelous, seizure-free days, and we were getting pretty optimistic (although I was trying not to get my hopes up.) Then, early Saturday morning, around 4 am, he had a short grand mal/tonic seizure (not sure which one - his body went rigid and his eyes rolled back but he didn't shake and it only lasted 15 seconds.) Then, an hour later while I was rocking him, he had another quick 10-15 second seizure. He had been acting weird since he woke up at midnight, a lot of twitching and startling (which very well could have been infantile spasms...we never know when he is actually having them.) So, I wasn't surprised when he had the seizures, just disappointed. I don't know how much longer Ed and I can handle all of this. I know they say that "God doesn't give you anything you can't handle" so I'm assuming God is under the impression we can handle this...but not much more, God. Please make Eddy better asap.

On a positive note, there are a lot of great things going on with Eddy. His development is seriously improving at a faster rate than I have ever seen it improve. He started crawling this week! One day he could only take one "step" on his hands and knees, the next day it was two, and all of a sudden he is legit crawling! Also, he is pulling up on EVERYTHING. Last night I looked at the baby monitor after hearing a little rustling, and I see Eddy STANDING UP in his crib! That was a shocker. The only problem is that he doesn't know how to get down from standing up yet, so I took off running towards his room. When I get there, I see a smiling baby who had just (fortunately) landed on his soft blanket, not the side of his wooden crib. Then around 3 am, I look at the monitor, and I see a baby standing up once again. He's definitely practicing this new-found skill at every chance he can get. He is also clapping all the time now, and it's so incredibly cute. I love that when a baby discovers something new, they do it over and over and over again.

I think the scariest thing of all of this is that the future is so much "up in the air" right now. Ed and I are planners. And we have been very lucky in that everything has worked out perfectly for us up to this point. We had a perfect "courtship" (Do they even use that word anymore??) for three years. We had a perfect wedding when I was 24 and he was 28.  We had a perfect three years of traveling to exotic places, enjoying married life, having successful careers, and then we had a baby. I always wanted a baby when I was 27 and I had Eddy when I was 27. Ed and I have always been hard workers, but we have also been very fortunate too. Everything has worked out exactly as we wanted it to. So now, with not knowing what the future holds for Eddy and for us, it's scary. Really scary. I know that we will handle whatever is given to us, but not knowing whether Eddy will be "ok" or not is really hard.

But, when I get scared (and it's quite often), I think of all of the amazing people that we have in our lives, and it makes me feel better. Our families and friends have been so supportive and kind. My parents have gone above and beyond the call of parenting and grandparenting duties. They were at the hospital in Buffalo every day. They stayed at my house for two days after we got home because Ed was sick and couldn't be here. They are always offering to watch Eddy and give us a break. Thank you mom and dad for being the best parents and grandparents in the world!

And thank you to everyone reading this, and supporting us, and for all of your kind words and prayers.  Please continue praying because the next two weeks are going to be huge for us. This week we find out the results of Eddy’s genetic testing, and next week, he has his long-term EEG, which will tell us how his infantile spasms are doing. We really, really appreciate your support and prayers.

A little more background about Eddy

One thing that I did not mention in the previous post is that Eddy has a developmental delay. It isn't severe as far as some developmental delays go, but it is important to note because this makes his "seizure disorder" all the more worrisome. Also, it doesn't really make any sense, in that there was nothing really "out of the ordinary" about my pregnancy, birth, or the beginning of Eddy's life.

Eddy was full-term, actually born on my due date. The birth was easy (And by "easy" I mean not easy at all, but as far as birthing goes, I'm told that pushing for twenty minutes for baby #1 is not a "difficult" labor.) We were out of the hospital a day and a half after giving birth, Eddy was a good eater (although not a good breast feeder), he smiled within the "normal" time frame, he rolled over when he was "supposed to." It wasn't until he was six months old that we started getting concerned because he wasn't close to sitting up on his own yet. Everyone told us the typical "every baby is different, don't worry, he'll get there" thing, which is probably what I would tell someone also...but then seven months came and Eddy still wasn't sitting up, eight months came, and he wasn't sitting up or babbling. Finally at nine months, Eddy was able to sit up independently, but by this time we were super worried. He also wasn't babbling or imitating and physically the only thing he could do was roll around and sit up if he was put in a sitting position. At his nine month check-up I voiced my concerns to his pediatrician, and he said he was also concerned and referred us to Early Intervention. Eddy was evaluated when he was almost ten months old, and it was determined that he qualified for physical, occupational, and speech therapy. Therapy started a couple weeks later (physical therapy twice a week and speech and occupational therapy once a week), and Eddy started slowly progressing. All of his therapists agreed Eddy was "bright" and quite unique, in that it didn't make any sense that he was delayed. He had a stay-at-home mom who worked with him constantly, both of his parents were at the top of their classes academically...Eddy "should be" really smart.

The general consensus was that, with a little therapy, Eddy would "catch up" in his own time frame. They also thought he might have some sensory issues because he wouldn't drink anything cold (including water, until he was about twelve months old!), he wouldn't sit in the grass without freaking out because he didn't like the way it felt, and he didn’t like touching any "slimy" foods like cooked apples or carrots. His demeanor, though, was great, as long as he didn't have to do anything he didn't want to do (which probably applies to 99% of babies, right?). We could take him out to a restaurant and he would sit quietly playing with his toys, smiling at everyone who talked to him. His personality is very sweet, chill, friendly, and social. So, even though he was "delayed" and we were worried, we were enjoying our boy and were optimistic that he would catch up with therapy.

But then, the day before his first birthday, he had a seizure. And the first thing I thought of after "Oh my gosh, he's having a seizure" was "There is something wrong...and it's much bigger than a delay." When we talked to the neurologist and said that Eddy was developmentally delayed, he became much more concerned about the seizure. If you have a delay AND a seizure disorder, there is a good chance that something major is causing it. The three "main areas" that would cause the problem are neurological (something is wrong with the brain), metabolic (I'm not going to pretend to understand metabolic disorders), and genetic (birth defects/something you're born with). After getting a normal MRI, we were able to cancel out any "neurological" underlying causes, for the most part. After getting the normal metabolic bloodwork results, we were able to scratch the "metabolic disorders" off the list (again, for the most part...there's always some strange, rare thing they could miss with the basic tests.) So then, we were left with a genetic cause. And I did tons of research and completely convinced myself that Eddy has a genetic disorder. I was a wreck and couldn't sleep or eat or do anything for a week straight because I was SURE that Eddy had a genetic disorder (The only positive thing that came from all of this is that I lost ten pounds and could finally fit back into all of my old clothes. Probably not the healthiest way to go about it, but I'll take it nonetheless. )

I called the pediatric neurology office (again) to see if they could refer us to genetics, and they did, but we weren't able to get an appointment until November. This was not going to be good enough for me. So, in our many hospital visits, I asked every single doctor I talked to (and there were several!) if they could help move up our genetics appointment. (One thing I've discovered throughout this experience is that there is ALWAYS an earlier appointment, if you're persistent enough.) Almost all of them said, “Sorry, can’t help you with that, not my department,” but one, nice young female resident said, “I’ll call genetics, give them your story, and see what I can do.” We were discharged from the hospital that day so I wasn’t sure if it would go anywhere, but I was just happy she tried.

The following week, when we were back in the hospital, I asked yet another doctor, this time the pediatric neurologist on call, Dr. Langan.  Immediately he said, “Sure, we’ll call genetics and have them come see you here in the hospital on Monday for a consultation.” (I knew it was that easy if we found the right guy!) But we left the hospital Saturday due to my husband getting sick, and we were back to square one for the genetics appointment. Finally, last week, I tried calling the genetics office again, and I left a message (in which I may have started crying.) Well, an hour later I got a phone call back from the genetics secretary who said, “Can you come in tomorrow?”  and of course I answered, “Yes!”

So the genetics appointment was last Thursday. During the appointment we finally got the results of Eddy’s Fragile X test (from about 4-5 weeks earlier) back, and luckily this was negative. They took more bloodwork from Eddy for a DNA microarray, which will basically determine if he has a genetic disorder or not. The genetics doctor, Dr. Robinson, was very helpful and kind, and he is going to personally call us next week to give us the results of the test. So right now we are anxiously and very nervously waiting for these results.

Something strangely positive has been happening since Eddy started getting seizures – his development has improved by leaps and bounds. In the past month, he has started army crawling like a champ and can now easily get anywhere. He is much better at transitioning from sitting to on his tummy, and has gotten himself to a sitting position independently on several occasions (and is sooo close on every other occasion). He is making much more sounds, and has said “mama” a few times! I swear he also said “up” but my husband doesn’t believe me on that one.

In the past week and a half alone (since we got home from the hospital and he started the Klonopin), Eddy’s development has made the biggest strides yet. Last week, I saw Eddy army crawling towards the couch like he was on a mission. I ran in the other room to grab my camera, and by the time I got back to the living room, Eddy was standing up at the couch by himself! He had never even expressed interest in pulling himself to stand, so I was crying (this time happy tears!) and throwing him up in the air. He probably thought his mommy went crazy.

Also, he has started to crawl on his hands and knees!  He can only get a few “steps” as of now, but last week he wasn’t even trying to! Another great accomplishment is that yesterday he started clapping, something we have been trying to teach him for 6 months now! I don’t know if it’s the Klonopin, the Keppra, just the normal time-frame of his development, God answering our prayers, or all of the above, but we are definitely uplifted and encouraged. I really do believe that God is part of this experience, and I know that through Him all things are possible. God has given us the gift of an amazing little boy who has already taught us so much. No matter what the future holds with Eddy, we will continue to love, encourage, guide, and support him in everything he does.

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.