Christmas Spirit, Seizures, Improvements, and Thankfulness

Wow, has it really been three weeks since my last post? That would be the holidays' fault. Isn't "the holidays" such a crazy time a year? (I love that "the holidays" is a time of year.) I was thinking today that, on December 6th, I generally think that I have so much time until Christmas and, man how good was I that I got my Christmas cards out yesterday, but really, Christmas is here in less than three weeks. And three weeks flies by. So I better get even more in the Christmas spirit. (This was my little peptalk to myself.)

Normally I'm not in the "Christmas spirit" at all by December 6th. But this year, I was in the Christmas spirit in November! It worked out perfectly that our first big snow fall of the year was on Black Friday, because Black Friday is the first day we are "allowed" to start thinking about Christmas. It's also the day that we get our Christmas tree. This, coupled with the fact that my husband actually watched a Christmas chick flick with me on the Hallmark channel last week (Is there anything better than Christmas movies on the Hallmark channel?), has resulted in me being more in the Christmas spirit than I have ever been at this time of year (Other than, probably, my entire childhood.)

I just re-read the above, and I saw that I have already used the word "Christmas" eleven times. I guess this is what happens when one starts a post not knowing what one is going to write about. I hope you will all forgive my stream of consciousness.

So on to Eddy...that sweet, fun little boy. Eddy is doing amazingly. The bad news is that he has had several seizures since my last post. He had two on the morning of Sunday, November 18th. They were really short (2-5 seconds), tonic seizures. I was a mess, and was so disheartened. The second seizure happened in church during the sermon, and I did everything I could not to cry for the remainder of the service. The President of St. Bonaventure, Sister Margaret, asked us how Eddy was after the service, and I could not control it anymore...I just started crying with Sister Margaret watching. I did everything I could to keep it together but the tears kept flowing. It's a good thing she is one of the kindest, most compassionate and understanding people out there...She just kissed my forehead and sat with me for a few minutes. (Thanks Sister Margaret!)

 
The next day, we were able to get in to Buffalo for a 24-hour EEG. Eddy had been doing the startle reflex thing all the time when he was sleeping, and Ed and I were so worried that his infantile spasms had come back. His two seizures looked like prolonged startle reflexes. His arms came up and he remained rigid for a few seconds. He was startling himself in his sleep constantly. (His sleep has been appalling for the past several months, but this was getting even bad for Eddy's sleep standards.) Monday evening in the hospital, Eddy took a nap and did the startle reflex about ten times. We pressed the button every time (You press a button when you think he may have had seizure activity, his EEG gets marked, and the EEG reader looks specifically at each of the marked times), and it turned out that three of the ten were in fact seizures. The good news, though, was that they weren't infantile spasms (although they looked just like them.) They were just really short tonic seizures. So...after this EEG, we were feeling relieved that they weren't infantile spasms, but dismayed that he is still having seizures (and three during one nap time!). I think the relief outweighed the dismay, though, because I decided to buck up and focus on the positives following this news. It could be much worse, and I was going to be thankful for everything we had with Eddy. He was continuing to develop and grow into a sweet little boy by the day, and I was going to focus on this rather than the fact that he is still having seizures. I guess after over a month of no seizures (that we saw), I was getting optimistic that he wouldn't have any more. Looking back, I know that this was naive, but it was really nice to feel so hopeful for at least awhile.

Eddy went two weeks without a (visible) seizure, and he was getting less and less twitchy by the day. We were starting to feel very optimistic once again, but then on Monday (3 days ago), he had two more short, tonic seizures in the morning (one when he was waking up at 7:30 am, and the second when I was putting him down for his morning nap.) Again, I felt disheartened, but after picking myself up by the bootstraps (which, I'm sure, was more God answering prayers than my doing on my own), I feel better today. Eddy is an amazing kid, and I have so much to be thankful for. If his occasional nocturnal seizures are the worst thing we have to deal with, I'd say we have it pretty good. (Today I am feeling hopeful once again, and I like this feeling, but tomorrow I may have a very different perspective if you talk to me!)

A few weeks ago when he had his two seizures, Eddy had just gotten a flu shot a few days before. Also, the week before, we started trying to wean him off of keppra. We just dropped his dosage from 3.5 ml to 3 ml, which didn't seem like a huge deal to me, but that could very well be why he had his seizures...or it could have been the flu shot. I keep looking at every single thing that it could possibly be, but there's no way of saying for sure what has caused his seizures. This week, I'm almost positive it's because Eddy has a cold. He is such a sensitive kid, and we knew that when we was sick, he was going to be more susceptible to seizures.

Let me talk about what Eddy has been doing lately. This kid is such an inspiration. He is improving so much in such a short period. In the past few weeks, Eddy has started climbing up walls and walking just touching the wall, cruising on every surface possible, walking with his push giraffe (I was so excited when I saw him walking alone just holding onto the giraffe!), signing for "video," (He's still obsessed with youtube videos on the alphabet), today during speech therapy he signed for "phone" four times! The thing I'm happiest about is his TALKING! He is babbling a lot now (bababa), he is trying to make raspberries, he says "up" ALL THE TIME!! He says a word!!!!!!!!!!!!!!!! It started out just as "UHHHHHHH" but in the past few days, he's added the "p"! Also, this week, he has started saying "ma ma!" He'll say "ma......." then wait a few seconds and say "ma" again! It is the funniest and cutest thing to hear. He also loves giving kisses now, and he loves kissing "Eddy in the mirror." He has this farm book that is his absolute favorite book, and he'll flip through the entire book and look at all the pictures, and when he gets to the blacksmith (because what baby farm book doesn't have a blacksmith??), he KISSES the blacksmith! Every time! It's so cute.

So I am done gushing about Eddy...but basically I just wanted to share that, despite some difficult and disheartening times in the past few weeks, Eddy is doing great and we are so happy and thankful to have him.

And we are so thankful to have all of you, who care about us and Eddy. And we wish you all a joyous and happy holiday season, and a very Merry Christmas.

Some things I have learned through this experience.

I thought I would share a few of the things I've been thinking of lately, things that I've learned only by going through this experience with Eddy. I can understand why they say that songwriters are most inspired when they are depressed or going through a difficult time, because I have been able to see things that I previously couldn't see, and a lot of it has only come by God allowing me to experience fear, and pain, and anxiety, and sadness with Eddy. And now that a small part of that fear and pain and anxiety and sadness is relieved (hopefully not just temporarily!), I'm better able to think through what God has allowed me to see as a result of this whole experience. 

First, and I know I've touched on this several times in my blog already, but God has shown me how easy it is to take things for granted. To take waking up healthy for granted. To take having a home for granted. To take having a wonderful husband for granted. To take having an amazing family and awesome friends for granted. To take sunny days and blue skies and relaxing times for granted. To take good meals for granted. It's so easy to complain about stupid things, when really we should be ignoring the stupid things and thanking God for what we have. I was definitely guilty of complaining way more than I should have before this happened, and I pray every day now that God will never let me get in that position again. I want to have an attitude of thankfulness indefinitely, and I don't want to complain about things that, in the scheme of things, don't really matter. At the time I thought I was completely justified in what I complained about (being exhausted and upset that Eddy wasn't sleeping, being frustrated with breast-feeding, being mad at Ed for not picking up his dirty socks off the floor, etc.) It's amazing how, when you're able to see a different level of fear and sadness, you're able to look back on all of the "little things" in a different, less upsetting way. One quick example of this: When Eddy was a newborn, I was having a really difficult time breastfeeding. He wasn't interested, he would scream every time I tried. And I really wanted to breastfeed exclusively, so this was (coupled with the horrid hormonal changes women experience post-delivery) the "end of the world" in my opinion. I was a mess. And my wise husband told me in the midst of my stress that, looking back, this would seem like it really wasn't a big deal in the scheme of things. That, who cares if I had to breastfeed and supplement with breast milk and formula, as long as Eddy was getting enough to eat? I told him, "No way, I will always be upset that I couldn't exclusively breastfeed", but looking back now, I'm like, "Really? I made such a big deal over that?" Having gone through all of the hospital visits, seizures, thinking Eddy had infantile spasms, developmental delays, not knowing if Eddy will be able to talk, not knowing where Eddy will be developmentally in a month, a year, five years...this has all helped me to see that "little things" like socks on the floor and exclusively breastfeeding, don't really matter in the grand scheme of things. I just want to always be thankful for what I have, and I don't want to take what I have for granted. 

Second, I have been blessed to see that there are so many kind, great people in this world. I don't want to imply that I thought the world was full of horrible people, but I guess I had gotten cynical in thinking that there were a lot of good people out there but not a lot of really GREAT people - giving, selfless, loving, caring people. Through this experience, I have been able to see how giving so many people are. People on Facebook that I haven't talked to in five or ten years came out of the woodwork and sent me heartfelt, loving messages about how they've been praying for Eddy and for our family, and how Eddy is on their church's prayer chain, and how their mother and grandmother are praying for Eddy, and how they really want to do something for us but don't know what to do, etc. When I think about how many people expressed care and concern and prayers for Eddy, it seriously brings tears to my eyes (ok, and there they go again. :) ). The world is full of wonderful people, and it's so good to know that. When you have a day where you only meet the negative, unhappy, rude, horn-honking, no manners, close-minded, people of the world, please take my word for it that there are many, many amazing, kind souls out there. And thank you to all of these kind souls who cared about our Eddy and spent time praying for him.

Third, if you are fortunate enough to have excess, either excess money, or time, or resources, or knowledge, it's so important that we help others.  Many of us have been blessed with good jobs, nice homes, free time. Being in the hospital, I have seen so much sadness - a mother that has lived at the Ronald McDonald house for months because her daughter has cancer, a mom at Cleveland Clinic who has been at the hospital with her son every day for nine months because he has a brain tumor. Even with the amount of fear and worry we had about Eddy's seizures while we were in the hospital, I realized how lucky we were to "just" have to go through what we were going through. A year ago, if I saw a page on Facebook about a little baby or a child who had cancer or brain atrophy or a genetic disorder, I would just ignore it. It was too hard to even consider, I didn't even want to even think about it. I wanted to go about my easy, neat life and not worry if I didn't have to. Now, I guess I can say I'm drawn to these pages. I want to pray for these people. I want to offer my support. I want to do what I can to help. God has shown me how fortunate I am, and He has also shown me that I have an obligation and opportunity to give back to others, in big and little ways. We are fortunate that Ed's business is doing so well. So now, when I get that letter from St. Judes, or the Ronald McDonald House, or Compassion International, or Worldvision, instead of giving every fourth or fifth letter, we give what we can every time. My thoughts now are that if I can buy a latte every time I go to Starbucks, I can give $20 or $30 or $50 to help these organizations that are doing so much good helping others. If you can't give money, there are so many other things out there you can give. The smallest of these is a smile to that person in Walmart that normally you would walk past without a glance. I have found myself smiling at more people, and praying for more people that I don't know, than I ever have before. And I am so thankful that God has shown me the importance of this, because a simple smile from us can mean a lot to the person we're smiling at. 

Lastly, and I guess this just ties in with everything else, God has shown me how important it is to stay positive, and to avoid negativity as much as possible. It's so easy to fall into the "negativity trap." Negativity is all around us, and we will always come across someone who is unhappy and feels the need to express this unhappiness. I was guilty of being negative the past couple of days, but yesterday evening I made a choice to try to remain positive, despite some less-than-positive news I got Wednesday afternoon. When Eddy was in the hospital a few weeks ago for low platelets, we weren't sure if the cause was ITP (common in kids his age, basically just means low platelets of unknown cause, often spurred on by a virus), or Eddy's seizure medication, phenobarbital. There is a lab in Wisconsin that specializes in checking blood for platelet antibodies to certain medications, so we sent Eddy's blood in to see if the low platelets could have been caused by the phenobarbital. Since his platelet levels have been normal lately, and he is still taking the phenobarbital, we all assumed that the low platelets were caused by ITP, not the phenobarb. It turns out that Eddy's hematologist, Dr. Brecher, got a phone call from the lab in Wisconsin on Wednesday afternoon, and he said this was odd because he's never got a call from the doctor there; normally they just send the results. The doctor told him that Eddy does in fact have a platelet antibody to phenobarbital, and since he had never seen this before, he tested Eddy's blood twice, and called Dr. Brecher personally when it came back positive. Leave it to Eddy to be the only kid this lab has ever found to have a platelet antibody to phenobarbital. The reason this is so disconcerting is because the phenobarbital has been the only medication that has helped to stop Eddy's seizures. Ironic, huh? So Eddy had his platelet levels checked yesterday, and they were 244, which is still in the normal range. As long as they remain normal, Eddy will be able to stay on the phenobarbital, and I'm praying this happens! It was so easy to get frustrated and upset about this news, and I definitely was for the better part of a day. But then I realized, God has gotten us this far, we still have Eddy, he's doing great, he hasn't had a seizure in 32 days (praise God!!), his platelets are fine. I'm going to focus on all of the positives going on here rather than the negative piece of news I just learned. There is a positive piece to every situation, no matter how negative it may seem. When Eddy was in the hospital constantly last month, and it seemed like this was never going to end, my relationship with God was improving, and that was the positive that I was able to focus on.

God's grace has given me the desire to become a better person as a result of all of this. I hope this post doesn't sound like I'm trying to be holier-than-thou because I'm definitely not; I'm no better or wiser than any of you. God has allowed me to see things that may seem obvious, but it's different when you believe them in your heart and not just your head. I'd like to think I have always been a kind person, but this whole situation has made me see how much kinder, and better, I can be with God's help. This started as me promising God that I would do anything if he could make Eddy better, and now, regardless of how things turn out with Eddy, I want to do what I can to make a positive influence on this world. We would still appreciate any prayers you can throw our way, though. :) Thanks to all of you reading this blog, and for all of your continued support.

Day 26!

Today marks 26 days since Eddy last had a seizure. To say that we are feeling relieved would be an enormous understatement. To say that we are feeling anxious would also be an understatement. Every day that goes by without a seizure is such a blessing, yet every day part of me is terrified that "Today's the day he's going to have another one." 

Ed and I keep asking each other, "What do you think it is that is helping Eddy?" Most likely, it's the phenobarbital, which he started, coincidentally, 26 days ago. I also think, though, that the increase in Vitamin B6 is at least in part helping him. We doubled his B6, from 70 mg a day to 140 mg a day, the same week he started taking the phenobarb. Pyridoxine Dependency is a very rare disorder where kids need massive amounts of pyridoxine, or vitamin B6, to help control their seizures. I don't think Eddy has Pyridoxine Dependency, but if there's a tiny chance that he does, it's worth it to continue giving him the B6. If you're interested, here's a link to another blog I've read about three little boys who have Pyridoxine Dependency: http://www.angelfire.com/amiga2/jenniz/

So Eddy is on 140 mg a day of B6 (and Dr. Gupta in Cleveland said we could increase it to 200 mg a day if we wanted to.) Just to give you a little perspective, normal toddlers need about 1 mg of B6 in a day. And Eddy is taking 140x that amount. The good thing about B6 is that it's a vitamin, and there aren't any crazy side effects (unless he takes it for a very long time; then we were told it can start causing nerve damage.)

Almost two weeks ago, we ended up back in the hospital with Eddy (exactly a week after we got home from Cleveland!). Ironically, it had nothing to do with Eddy's seizures. I brought him to the pediatrician for a fever (102 degrees) and lots of strange bruises all over his body (but he didn't fall...he woke up with them). Turns out, Eddy had influenza type B and extremely low platelets. (Normal platelet levels are between 150 and 400; Eddy's was 7.) He was immediately taken by ambulance, directly from the pediatrician's office, to Buffalo Children's, where he was started on an IV antibiotic and an immunoglobulin treatment to increase his platelets. His little body did not respond well to the treatment, and they had to stop it, but they started him on prednisolone (ironically, the same steroid he was going to be started on for infantile spasms.) Luckily he was only on the steroid for 5 days (I say luckily because it gave him horrible insomnia and irritability), and his platelets went from 7 to 15 to 35 to 108 (last Friday), to, yesterday's level of 389! (Now he's on the high-end of normal and I can feel much better about him falling and not having internal bleeding! He does still wear the helmet that they gave us at the hospital whenever he's crawling around, just to make mommy feel better. Pretty sure he's the cutest helmet-wearing kid ever!)

Last weekend, Ed and I were discussing and researching diet, development, and seizures. We read a lot of blogs, research articles, and general internet pages about how organic/gluten-free diets can help improve development in kids who have autism-like symptoms, and also can decrease the frequency of seizures. Although this is rare, we thought, "If we can change Eddy's diet and help his development improve and his seizures to stay away, then it is definitely worth a try." And if it doesn't stop the seizures, at least an organic, mostly gluten-free diet is going to be healthier for him. So, last Sunday, I did a three-hour, two-store grocery shopping trip (Ed's parents watched the baby during this massive shopping expedition - thank you!), and I came away with lots of organic, gluten-free, meals and snacks for Eddy. This week I have done way more preparation for Eddy's breakfasts, lunches, dinners, and snacks than I ever have before, but I can already see a positive change. He's much more alert, responsive, attentive, and his little personality is shining through more than ever before. It has definitely encouraged me to continue this time-consuming, (and expensive, holy cow) diet for Eddy. Here's what Eddy had to eat this week: organic bananas, lentils, acorn squash, carrots, peas, green beans, sweet potatoes, raspberries, gluten-free oatmeal with fruit, gluten-free dairy-free mac n cheese, gluten-free chicken tenders, buckwheat waffles, animal crackers, oat cereal, organic yogurt, and organic quinoa and brown rice. Much healthier than the Gerber toddler meals that I threw in the microwave for thirty seconds for lunch and dinner. (I always thought they were healthy because they have a meat and a vegetable, but after reading the long list of ingredients and seeing all the preservatives, I realized they weren't as healthy as I thought they were.) This has already, in the past week, opened up my eyes to the importance of healthy, wholesome foods. I've always "known" all of this intellectually, but only now is it making sense practically. It wasn't until we had a child and thought about how the food going into his body is fuel for his energy, brain development, and physical development that it actually started to make sense. I am optimistic about this organic gluten-free diet and I hope that it continues to make Eddy healthier.

Here is a picture of Eddy after feeding himself some lentils yesterday. :)

I know that I say this often, but I truly mean it. Thank you SO much for all of your good thoughts and special prayers for Eddy and for us. I feel like things have turned a corner, and I know that God has heard, and is continuing to hear, all of our prayers. For the first time in a long time, I feel hopeful, and not too terrified, about the future. The last month (ok, three months) was very difficult, but we are optimistic that things will continue to get better. Thank you, thank you, thank you for your prayers. <3

In limbo

So I thought I would write a quick entry because it seems that I only write when I have a ton of stuff to update, and by the time I'm done it's all information and not a lot of substance.

I've been thinking a lot since we got home from the hospital on Monday. What my life is going to consist of for the indefinite future. How much things can change in a short period of time. (Can you believe it hasn't even been three months since Eddy's first seizure? It feels like about three years.) How it's so easy to take things for granted when life is easy and everything is going well. How, if my life gets back to "normal" (whatever that is), can I make sure that I no longer take peace and normalcy for granted?

Eddy has been doing great since we got home from the hospital. No seizures in eleven days, his physical development is continuing to come along. He's crawling faster, pulling up and getting into a sitting position easier, and cruising along furniture more every day. He seems to have gotten used to his new seizure medication and seems to be increasingly more "with it." He's starting to make more sounds, although verbally he has a long way to go. One of the things that I'm the most scared of is Eddy being non-verbal. A lot of the genetic disorders and metabolic disorders that have seizures and developmental delays as symptoms result in non-verbal future outcomes. I know that things could be worse than that, but I really want Eddy to talk. Badly. His speech therapy was just increased to 8x/month (it was 4x/month) and I'm hoping that helps. If he just started talking, I would feel so much better about his future outcome.

I'm also really worried because, looking at past experience with Eddy, he seems to do really well after starting a new seizure medication, but a short time later, it seems to stop working and he starts having seizures consistently once again. I'm really hoping that doesn't happen with the phenobarbital, but I know it's a possibility.

I got a phone call yesterday afternoon from Cleveland Clinic. I had called the previous day asking about the results of Eddy's PET scan. A nurse called me back and said, "His PET shows mild assymetry with left temporal glucose being mildly low, possibly reflecting recent seizures." Um, what? I like to think that I'm pretty smart, or at least I can do a good google search when I don't understand something; but an hour's worth of research resulted in me having no idea what the heck the nurse was talking about and thinking Eddy might have Alzheimers Disease. (If you google that exact description, a few pages about Alzheimer's comes up.) I asked the nurse what that meant and he said, "I don't know, Dr. Gupta spoke with Dr. Weinstock and he will discuss the results with you once he receives the written report." Of course, I immediately called Dr. Weinstock's office and am currently waiting for them to call me back about the results.

If there are any doctors out there with experience in brain PET scans and can kindly explain to me the results of Eddy's scan before Monday, I would greatly appreciate it. :)

I've been a little discouraged lately because I feel like I'm chained to my house. The doctor in Cleveland said that he believes Eddy is the type of kid who will get sick easily (hence the double ear infection two weeks ago when I was trying hard to keep him healthy), and when he's sick he will get seizures. So he advised us to do what we need to to keep Eddy healthy. This basically means that I need to keep Eddy away from people who spread germs, and these people are usually little kids. And all of the places I would take Eddy to socialize (play group, the YMCA, etc.) have little kids around. I know that I will (hopefully) be less paranoid in the future, but for now I'm keeping Eddy away from as many germs as I can. And that means we are a lot more isolated than I would like to be. But this, too, shall pass I'm sure, and I just have to keep reminding myself that. It's much better to be "chained" to my spacious new house than the hospital! (It could always be worse...another thing I regularly remind myself of.)


Ed and I got a card today from the great people at Olean High School, where I taught math for two years before resigning this past year to stay home with Eddy. They included a very generous gift certificate and gas gift card. The card was signed by dozens of faculty, staff, and students I used to work with. It was so touching to know that so many people are thinking of us and praying for us. Thank you so much Olean High - you are so kind and generous and we really really appreciate it.

And thank you to everyone who has continued keeping Eddy in your prayers and thoughts. We are so lucky to have all of you in our lives.

Cleveland Clinic

So much has happened since my last post that I don't even know where to begin (and I don't have a ton of time so I'm going to attempt to consolidate.) Last Sunday, October 14, Eddy woke up and had his typical tonic/clonic seizure that he had been having around 7 am. We were obviously upset and unhappy, but we weren't surprised. He had been having this seizure every five days or so, and it had been six days since he had it last. I took him downstairs to change his diaper and give him his seizure meds, and as I was changing his diaper, he had another seizure. This absolutely terrified me because 1.) He had never had two seizures that close together before, and 2.) He was awake and all of his other seizures had been when he was sleeping. The second seizure was a tonic seizure where his arms come up and go rigid for 10-15 seconds, and his eyes kind of bug out of his head. I ran upstairs to tell Ed, and he couldn't believe he had another seizure. He came downstairs with me to help me give Eddy his medicine, and he had another tonic seizure when he was in his high chair. At this point I basically freaked out and called the neurologist on call at Children's. When I was waiting for her to call me back, Eddy had yet another seizure. She called me a few minutes later, and as I was talking to her, he had his fifth seizure. She advised me to give him Diastat, a rectal emergency seizure medicine that is supposed to stop bad seizures. She also told me to call 911 and get him to the ER as soon as possible.

We gave him the Diastat as soon as we got off the phone with her, but it did nothing, and he continued having seizures every 3 to 4 minutes. By the time the ambulance came, he had had maybe eight or nine seizures. By the time we got to the hospital, Eddy had had about twelve seizures. All of them, other than the first one, were the tonic ones where he went rigid for anywhere from 5-20 seconds.

At the hospital, he was having a seizure every 4 to 5 minutes. The ER doctor in Olean called Buffalo Children's to see what they wanted him to do, and they told him to have the pharmacy make an IV solution of some derivation of phenobarbitol (I can't remember what they said the drug was called at this point). They were hoping this would stop the seizures. We waited for the pharmacy to make it, and he continued to have seizures. Finally, they hooked it up to his IV (which took about four pokes to get in, poor kid), but he continued to have a seizure every five minutes. It took about twenty minutes of the medicine to be in his system for him to stop having seizures. I was absolutely terrified at this point, thinking that nothing would stop them. He had had TWENTY seizures in less than a three hour period!

We were waiting for Eddy to be transported to Buffalo, and they were planning on taking him by helicopter. The helicopter took off with the STAT team from Buffalo, but they had to turn around because of the weather. So we had to wait for them to get back to Children's, get the ambulance ready, and drive down to Olean. While we were waiting, Eddy had a few more short seizures. Hours later, Eddy was being taken by ambulance to Children's. When we got there, we spent several more hours waiting in the ER, and he had a couple more seizures there, making the count about 25. We were finally admitted around 6 pm, eleven hours after all this craziness ensued. When he was in his hospital room, Eddy was started on Ativan, another drug to stop seizures. He had been given so many drugs over the course of the day that he was almost completely sedated and out of it. Ed and I went to dinner to get out of the hospital and try to regain some sanity, and my parents watched Eddy. While we were at dinner, he had a few more seizures, but they were different than any he's ever had; he just went limp and his head dropped a few times. It was hard to tell if they were seizures or if they were just from him being sedated and exhausted, but he was hooked up to an EEG at this point, and it was verified that he had four seizures on the EEG. The interesting thing was that the seizures were not infantile spasms, as we thought they were, but they were focal seizures coming from one area on the left side of his brain. This is much better than infantile spasms, which are more generalized and come from deep inside the brain. Previously, Eddy's EEG showed more generalized seizures, meaning they came from both sides and not one specific area. Now it appeared that his seizure type had changed, at least the four that were caught.

In the two and a half days he was hooked up to the EEG in Buffalo, five seizures were caught (the last one being on Monday), and they were all focal. They said that actually his EEG looked better than it had previously, which was not what we were expecting after everything that had happened. He was still having abnormal waves, but the waves that were reminiscent of hypsarrythmia were gone.

To make matters more confusing, Eddy's neurologist was out of the country on a family emergency. Because we had no idea what was going on, and his neurologist was gone, we decided to just see if we could get Eddy transported to the Cleveland Clinic. We had looked into taking him there on an out-patient visit, but now we wanted him to be transported there immediately to see if they could give us some more answers. Luckily my parents had taken the entire week off of work and were at the hospital every day (Thanks mom and dad, you are amazing!), and so I was able to track down the neurologist on call and make tons of phone calls to try to make this transfer happen. I just showed up in the Neurology Clinic, which was next door to the hospital, and I asked to talk to the nurse and the doctor. The doctor on call was great, and he was supportive of the transfer. He called the neurologist on call at the Cleveland Clinic, and he agreed to accept Eddy. Then he called the insurance company and had several talks with them to convince them to approve this transfer. After all of this, the medical director denied it, saying since Eddy wasn't in the ICU, it wasn't necessary. Then, five hours after I got the call saying it was denied, I got another call from the insurance company saying it was approved. It turns out the first medical director failed to put in the paper work, and the nurse had to ask a second medical director to review Eddy's case. He, in turn, immediately approved it. It's comforting to know that something as important as this isn't at all subjective, isn't it?

So this was Wednesday afternoon, and we were told that we had to wait until Cleveland had a bed available for him to be transferred. On Thursday, Eddy had an MRI, and this came back normal once again (He had had an MRI back in August but they wanted to see if his seizures had changed his MRI at all.) Thursday afternoon we were told that we would be transferred to Cleveland the next day. Friday around noon, the STAT team came and Eddy and I were taken by ambulance to Cleveland. We were thrilled that it was finally happening, and we knew that it was a result of many prayers. We were hoping for some more answers, but we also knew that Eddy's case was very atypical, not clear-cut, and most likely would continue to be nebulous in Cleveland. Even if we could get a few more answers, though, we would be happy.

Eddy was hooked up to another EEG as soon as we got to Cleveland, on Friday afternoon. From then until now (Monday afternoon), he has had no seizures. I forgot to mention that Eddy was started on Phenobarbital on Tuesday. I was very opposed to the Phenobarb before any of this happened (it delays development, which is not what Eddy needs!), but knowing that Dr. Weinstock, Dr. Langan, and Dr. Gupta (the neurologist in Clevelend who was consulted by the other two neurologists) all agreed it could help Eddy, we decided to go for it. It has helped him up to this point, because as I just stated, he hasn't had any seizures since Monday! We're hoping it continues to help.

We have met with Dr. Ajay Gupta, a world-class neurologist here at the Cleveland Clinic, three times since we've been here, Saturday, Sunday, and today. He is very impressive, patient, knowledgeable, and has answered lots and lots of our questions. Dr. Gupta reviewed all of Eddy's records and looked at his EEG from this visit. Let me attempt to summarize everything he's said...

Eddy is an atypical case, but he said he is atypical in a good way. He does not think Eddy has infantile spasms right now (probably the best news we heard from this whole trip!!) The brain waves that were reminiscent of hypsarrythmia are gone, and his EEG actually looks pretty good right now. He said that Eddy still has some slow waves on the left side, but his EEG looks better than it did. This could be a result of the phenobarb or it could be his brain maturing or it could be his seizures changing. His EEG has changed so much already that I know not to get too optimistic because a new medicine can clean up the EEG, but after he gets used to it, the next EEG can look worse once again. He said that Eddy definitely has epilepsy, and epilepsy is always very unpredictable. Even if two kids have the same seizure disorder and similar EEGs, their prognosis and outlook can be completely different.

Since Ed and I are numbers people, we appreciated that Dr. Gupta gave us some percentages. He said that Eddy had a 33% chance of outgrowing the seizures when he gets older. That's the best case scenario and the one we are really hoping for. He said that Eddy had a 33% chance of having a disorder that causes epilepsy for his entire life. One possibility is Dravet Syndrome, which is a genetic disorder that causes seizures and developmental and cognitive delays. It is a spectrum disorder, so even if he has it, there's no way of knowing where he will be developmentally in ten years. This is obviously something we're hoping he doesn't have. They did the test in Buffalo on October 5, and they said it can take six to eight weeks for the results to come back (Only two facilities in the country do the test for Dravet.)

Dr. Gupta ordered a PET Scan, which Eddy had this morning, to see if he has cortical dysplasia or some other abnormality with his brain that is so small that it wasn't found on the MRIs. The reason he did this is because Eddy's seizures are now coming from one spot on the left side of his brain, and this could be caused by cortical dysplasia.

We are about to be discharged from the Cleveland Clinic so I'm running out of time, but I wanted to update everyone who has been asking. Although we still don't know exactly where Eddy will be or what will happen with him, this has been a beneficial trip. We understand now that Eddy's epilepsy could go in any direction, and we're hoping that with the right combination of drugs, we will be able to control it (and hopefully he will outgrow it). So now we are waiting on the results of the PET scan, which we should hear something about in a couple of days, and the Dravet test, which we should hear something about in four or five weeks. Thank you so much for all of your prayers and encouraging words.

Waiting...Again.

If God appeared to me right now, I think I would say, "Wow, God, I don't understand why you're letting this happen and how any this can be Your will."

Since my last post almost a week ago, we increased Eddy's Keppra and waited to see what would happen. Well, Eddy had another seizure Monday afternoon during his nap, and it was the same as the previous two seizures - a spasm that turned into a tonic seizure (he goes rigid), then it turns into a tonic/clonic seizure (starts shaking after he goes rigid). I called Dr. Weinstock, his neurologist, and he said that we needed to start him on a treatment, and he recommended prednisolone. This is a steroid, similar to ACTH but not as harsh. It is administered orally, as opposed to having to give Eddy a shot every day. It also suppresses the immune system, but not quite as bad as ACTH does. It still has quite a few bad side effects, but we were happy to have finally made a decision. He called in the prednisolone, we picked it up, and we were ready to start it on Wednesday.

Then Wednesday morning at 2 am, Eddy woke up with a horrible runny nose and cough. If you have read my previous blog posts, you may be thinking "Hmm, am I sensing some déjà vu? This is sounding familiar." Yes; the last time we were going to start a treatment (ACTH), Ed got sick right before we were going to start it. The funny thing is, Ed (my husband) never gets sick, and Eddy hasn't been sick in months (Other than having seizures).

So I called Dr. Weinstock's office again yesterday morning, and he agreed that we need to wait until Eddy is better to start the prednisolone. His immune system, since it will be suppressed, has to be in top condition whenever we start the steroid.

Is God trying to tell us something?? Isn't this a little coincidental?? Both times we were going to start a treatment, someone gets sick right before and we have to wait.

So Eddy was still sick this morning, and his cough had gotten worse. Also, he developed a rash on his face. I took him to his pediatrician this afternoon, and it turns out Eddy has a double ear infection and eczema! And on top of that, his bottom molars are coming in! I just don't understand how God can let all of this happen to our poor little boy. It seems like everything is hitting him at the same time, and our typically sweet, happy baby is absolutely miserable. Which means, as all you parents out there know, that his mommy and daddy are not exactly the happiest of campers either.

Now that we are forced to wait again, I decided to try to make this a productive waiting game and look for a second opinion to see if we can find someone who has seen a case like this before. Initially, we just wanted to get Eddy started on a treatment to make him better and didn't want to take the time to get into another doctor. But now we decided a second opinion might be a good idea.

Don't get me wrong, I respect Dr. Weinstock tremendously. He is a great neurologist, and he definitely has Eddy's best interest in mind. But Buffalo Children's, comparatively, is a small hospital and doesn't even rank in the top fifty of the US News and World Reports Pediatric Neurology programs. So I contacted the #1 rated program (Boston Children's Hospital) and the #3 program (Cleveland Clinic). We are going to send Eddy's records to both facilities, and ideally we would like a second opinion over the phone (especially from Boston). We would be willing to travel to Cleveland (actually we would be willing to travel anywhere, if it could help Eddy) because Cleveland is only 3 and a half hours away. I spent some time today researching the Pediatric Epilepsy Center at Cleveland Clinic and I am very impressed. Their technology and experience is top-of-the-line, and I am encouraged by the thought of someone there potentially having seen a case like Eddy's before and knowing what to do for him.

So that's where we're at. I think that, now, the waiting is the hardest part. Even harder than watching Eddy have seizures. I know that he is going to have seizures until we figure out the best course of treatment for him, and I just want to have that information now.

I don't want to sound ungrateful, or negative, because I know how lucky I am to even have this little boy in my life. And I'm so fortunate to have my husband, and my family, and friends, and everything that God has given us. So many people care about Eddy, and us, and it's so comforting to know that. Please continue to pray for us, especially that God will lead us in the right direction for a doctor and a treatment that will help cure Eddy. Thanks so much <3.

The Rollercoaster Continues

Well we just got home from our latest hospital trip, this time for a 48 hour EEG, and I thought I would give an update about what's going on. Everything is just as confusing as it's been for the past two months! Nothing is clear-cut with this little boy! As you know, last week, we got good news that Eddy's spasms had basically gone away...or he didn't have any during the 24 hours he was hooked up to the monitors. Four weeks ago was the first time we were told Eddy had infantile spasms, but even then we were told that he was "atypical." He didn't have the spasms in clusters, which is typical for infantile spasms, and he only had them when he was sleeping. In addition, he only had a few of them, maybe five. (A lot of babies have lots of spasms a day, sometimes into the hundreds.) Also, the spasms turned into tonic seizures, which isn't the typical "passway" of seizures. (Normally a baby would have a spasm, have another spasm, have another spasm, etc. Eddy would start with a short spasm, but it was turning ino a tonic seizure, where his arms went rigid for 5-10 seconds.) So, four weeks ago, we were all set to start ACTH, a horrible steroid treatment that is recommeded first a lot of the time for infantile spasms because it has the highest success rate of making everything go away. Then Ed got sick and we decided to wait a couple of weeks and see if Eddy was still going to need ACTH.

Then Eddy seemed to be doing better, not having a seizure for two and a half weeks. And his development was improving by leaps and bounds. But then, about two weeks ago, he started having seizures again. He had three last week, and he had a bad one last Saturday. He had another one Wednesday night when he was hooked up to the monitors (which is actually a good thing, if he's going to have them, it's better that it's when he's hooked up to the EEG). The one Wednesday was the exact same as the one last Saturday - his arms came up like a spasm, then went rigid (tonic seizure), then he started shaking and his eyes rolled (tonic/clonic, or grand mal seizure). So, Dr. Weinstock was very worried yesterday morning when he spoke with us, because the spasms were back, and one of the two turned into a grand mal seizure. He said that we had to start a treatment, and we had to decide by today what that treatment would be. He recommended ACTH again but said we could also try prednisolone (a steroid similar to ACTH but not as harsh) or vigabatrin (which can cause irreversible damage to your eyes). So all day yesterday we discussed each treatment and tried to decide what to do. We were leaning towards ACTH, but were waiting to talk to Dr. Weinstock again this morning, after he reviewed Eddy's EEG from last night.

So this morning, Dr. Weinstock came in the room and said that Eddy didn't have any spasms or seizure activity last night. He stated once again that Eddy is very atypical, and he does not fit into any "standard case." He said that, a few weeks ago, Eddy had him very very worried about the spasms and seizures, and he knew we had to start a treatment. Then Eddy seemed to get better and he felt good about his progress. Last week, he seemed more optimistic about Eddy's EEG. Then yesterday he was again very worried because of the seizures and spasms, and he knew we had to start a treatment. But today he said that Eddy didn't have any seizure activity during the night, and so we can hold off for now. We are just going to increase Eddy's Keppra to the max dosage and see if that does anything to stop the seizures he's still having. It's such a rollercoaster!!

I guess the bottom line is that Eddy is a very special little boy who is not going to fit into any mold! On the one hand, we are very happy that we don't have to be in the hospital all week next week and put Eddy through the horrible treatment of ACTH. On the other hand, Eddy is still having the weird, abnormal EEG brain waves when he sleeps...and he's still having seizures...so chances are, the spasms are going to come back, and we might end up having to do one of the three above-mentioned treatments after all. Everything is just so up in the air right now, and we have to constantly be on our toes. I feel like I should just get a device that attaches from my head to the video monitor so I don't have to keep carrying it around. I probably look at it every ten seconds when I'm awake, and every fifteen minutes during the night. Occasionally, I'll sleep for an hour or two, but I'll wake up terrified that I missed something. I know that this won't be the case forever (well I'm hoping it's not!), so I just have to be strong and alert for right now. And tomorrow my fabulous parents are spending the night and taking the video monitor for me once again so I can get some sleep. (Thanks mom and dad, you are the best!!)

I wish you all could have seen Eddy when we got home this afternoon. He was so happy that he was finally able to move around that he just crawled around in big circles, playing with his toys, for a half hour. It was adorable. I was worried that not being able to practice any of his new skills for the last couple days might hurt his development, but he was crawling faster than I've ever seen him and pulling up on the couch like a champ. So there are lots of positive, encouraging things going on with Eddy, and these are the things I need to focus on.

Another positive is that my wonderful husband made my birthday very special with roses, playing our wedding song, and treating me to a great birthday dinner at the Hostaga Restaurant in Olean. It was the perfect, relaxing end to a stressful week, and it gave us a refreshed, new outlook on everything.

Thanks for the prayers and birthday wishes - you are great friends and family and I really appreciate you all!

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.