Anticipation and Abnormal Brain Waves

It's been awhile since I last blogged, and I could go into labor at any time, so I thought it would be a good idea to update while I still can!

I'm currently 36 weeks, 4 days pregnant with these twin girls. So far the pregnancy has gone extremely smoothly. I really can't complain at all, especially with it being a twin pregnancy. (I really can't complain, but I'm going to for just a couple minutes. Bear with me :) ). In the past week, I've gotten really uncomfortable and huge. I guess that's to be expected, but it's getting a little old not being able to bend over to pick something up. (And you don't realize how many times a day you bend over until you can no longer do it!) Luckily, the weather's been pretty nice up until this past week, and I've been able to cut it in flip flops for the majority of my pregnancy. Well, it was about 35 degrees the other night and I (actually) left the house, so I thought I should probably wear socks and shoes. I'm not even exaggerating when I say that it took me ten minutes, and a whole lot of grunting/sweating before I was able to get my socks and boots on. (Nice visual, huh?) That was when I really noticed how incredibly huge/uncomfortable I am, and how different a twin pregnancy is from a singleton pregnancy. (At least different from my previous pregnancy - Eddy was only 6 lbs, 5 oz when he was born at 40 weeks, so maybe I just had an easier go at it. But I remember walking for miles the week Eddy was born. Now I can barely walk to the doctor's office!)

But all in all, I have been extremely blessed this pregnancy. I have an ultrasound every week at this point and the girls are really active, my fluid levels are great, their heart rates are good, and they are growing at a very similar rate. They are small, but Eddy was small, and they are twins so that's to be expected. I was quite concerned about their size for the past several weeks, but last week my doctor assured me that they are growing fine, and he said he wasn't concerned about their weight at all. Last week, at 35 weeks, Baby A was measuring 4 lbs 6 oz, and Baby B was measuring 4 lbs 10 oz. (Ultrasound weight estimates are just that - estimates; so really we could be a pound more or less than those weights.) If these estimates are close to being accurate, that's 9 lbs of baby inside of me! When I think about this, I'm like, yes, I should be quite uncomfortable! But despite my discomfort, I am thrilled that they are still gestating and haven't been born yet. I'm shooting for anywhere from 37-38 weeks, and I can't believe how close that is! Months ago, I asked my doctor what the ideal time frame for twin pregnancy is, and he said 38 weeks. At the time I didn't think I would get close to this, because the average twin pregnancy is 35-36 weeks, but it looks like it could happen! I just want to keep them in there as long as possible to give them the best possible chance of not having to spend time in the NICU. (Especially because Olean doesn't have a NICU - I would have to go to Buffalo, and I don't want to be away from Eddy. It's already going to be so hard being away from him for a few days!)

Speaking of Eddy, he is doing well and is a sweetheart, as usual. People have been asking us how his seizure activity has been and if he's still seizure free. This is not an easy, or short answer, so here goes. At the end of September, Eddy had his first EEG since starting the ketogenic diet. Eddy started the diet at the end of May, and usually they want to do an EEG about every three months. This was just a short, one-hour EEG, not the overnight one that he's had many times. Ed and I were hopeful that his EEG would have improved even slightly, especially because he had been doing so well with seizure control. (Well, I was hopeful. Ed was assuming it had remained the same because we haven't seen huge strides in his development. It's definitely improving, but at an extremely slow rate.) I was quite nervous about the EEG because for about two weeks leading up to it, Eddy's sleep was incredibly bad. He tossed and turned literally all night long, and his arms came up constantly. It was almost like he had restless leg syndrome, but in his arms. The morning of his EEG I was researching myoclonic seizures (which are basically very quick seizures where muscles tense), and I was really hoping that Eddy's seizure type had not morphed into this. I read one website that stated that, "weaning barbiturates could provoke myoclonic seizures." Well, a week prior to his bad sleep starting (so the first week in September), we had decreased Eddy's phenobarbital (a barbiturate) again, as per our weaning schedule. As the wean becomes closer and closer to completion, Eddy's little body is going to have a more and more difficult time with withdrawal symptoms. His level as of a month ago was 10, which was down from 15 at his previous blood work reading a couple of months ago, and down from 38 from almost a year ago (when he was basically drugged out on phenobarbital constantly).

So, back to the EEG. We took Eddy to Rochester on September 30, and his EEG was at 12:30 pm. We were really nervous to get the results of the EEG, which we were going to hear at his appointment with his neurologist at 4:30 pm.  Just as I had suspected (but hoped against), Eddy had some myoclonic seizure activity show up on the EEG. Two times during the forty minutes that Eddy had slept during the EEG, his arms came up (like what was happening so many times every night). One of these occurrences was normal wakening, but the other was "a single epileptic discharge." Eddy's neurologist said that "technically," this was a myoclonic seizure. Additionally, Eddy's brainwaves are still very abnormal. He still has slow waves all the time, especially on the left side of his brain, and when he's asleep, he has these abnormal high amplitude spikes. So, basically, not good news at all. His EEG is the same as it was last fall, when he was having tons of seizures. Although he only had one "epileptic discharge," his brain waves are still very abnormal. The epileptic activity is coming from one area in his brain, the same area that the 25-30 seizures that were caught on the EEG in May were coming from. This area is in the left-middle part of his brain, right near his communication center. This explains a lot about why Eddy has such a difficult time communicating and learning. He has been trying SO hard to talk lately, but he has such a difficult time making words. He still loves his youtube videos, and every time he watches one, we make him sign and say "movie." Sometimes it comes across very close to "movie," which is exciting. A lot of the time it's more like "mooo-vv", but he wasn't doing this a month and a half ago, so it's progress! 

We are still very happy that Eddy hasn't had any "big" seizures since the beginning of June. It's tough to know if Eddy is even having seizures now, though. Luckily, Eddy's sleep has gotten much better in the past couple of weeks, and the number of times his arms come up has dwindled to almost none. His neurologist believes that the cause of the myoclonic activity is most likely due to the phenobarbital wean. We held off on decreasing his dose this month, because we want his body to be able to get used to the last decrease first. As much as we want him off of phenobarbital, we want to do it in a responsible and cautious way. I'd be curious to see his brain waves right now, because his sleep was at the absolute worst right around when he had his last EEG. Even though we didn't want to admit it, we both feared that the crazy sleep was due to seizure activity. Now that his sleep has improved tremendously (maybe his body has now gotten used to the last phenobarbital reduction?), I'm wondering if his brain waves are still as abnormal as they were a month ago.

So, as you can see, it's all very confusing. It's hard because we want to keep his "seizure free" countdown going because it was so encouraging for us, but due to "technicalities," I'm not so sure this would be acceptable. Darn you, epilepsy.

We are both so in love with that little boy, though. He is the sweetest, happiest kid around. He loves to give kisses and hugs, he has been laughing and smiling a lot, and he's just generally happy. He's also been extremely healthy for the past nine months, and I haven't had to give him Tylenol or an antibiotic once in the past nine months. This is pretty good for a two year old, especially one that was having three fevers a week a year ago! He takes tons of supplements/vitamins/minerals, and is on a very healthy organic diet. (Healthy other than the massive amounts of fat he consumes - but at least it's healthy fats - organic coconut oil, olive oil, and avocado oil.)

His development is improving, albeit slowly. But everything I hear/read says that as long as he's improving, things are good. If development stops or regresses, then we worry. His development is definitely moving forward. Sometimes it's hard to not want it to speed up and happen the way a "normal" toddler should develop, but Eddy has so many obstacles in his way that "normal" toddlers don't, and he's trucking along and making improvements every day. His therapists are happy with his improvements, and they all agree that he has been much more alert, aware, attentive, and engaged in the past couple of months than he ever has been before. His identification of objects and matching objects is always 80-90%. He definitely understands more than he is able to communicate, and right now, his communication is the area of most concern. We will just keep taking it one day at a time, though, and trust in God that He has the best possible plan in mind for Eddy.

In the mean time, we are just going to continue to enjoy our little boy and get ready to meet our new baby girls! Please pray for Eddy's development, and for healthy, happy baby girls! :)

Life is good!

It's been two months since my last blog post, so it looks like it's time for an update!

Life is great. I know my title says "Life is good," but that's an understatement. Life is great. Eddy is currently 85 days seizure free! 85 days!! We are so incredibly thankful. This ketogenic diet has been the miracle that we prayed it would be for so long. Eddy's development is also progressing well, and he has been healthy and happy for months now. We have also done two separate phenobarbital reductions, one at the beginning of July, and another at the beginning of August, and so far Eddy has done very well with the wean! His neurologist said to "expect seizures" on the first few days following each reduction because his little body has been addicted to it for the past eleven months, and it's a very difficult drug to wean. But Eddy has proven that he is tougher than phenobarbital and has continued to be seizure free! We will do the next wean at the beginning of September, then the beginning of October, then the beginning of November (when he will be down to half a pill once a day), then at the beginning of December, at which time he should be completely off of phenobarbital! Please pray that the wean continues to go smoothly.We have already noticed much more attention, quicker response time, more awareness, and more happiness from Eddy since we started the wean. I think that this increased "withitness" is due to both the reduction of phenobarb and the reduction of seizures, thanks to the diet. Whatever the cause, we are so grateful.

Between my last post and now, we celebrated Eddy's 2nd birthday! I can't believe our little man is two already. The day he turned 2 was probably the best day he's ever had. He was happy, attentive, laughing, and making lots of sounds all day long. The day before his birthday, we had a great party with a lot of family and friends. It was so nice to spend the time with so many people who love Eddy. My husband started a tradition last year at Eddy's first birthday party to unveil Eddy's "birthday video" that he made for him, and the tradition continued this year. It's basically a "year in review" video, and this year's video meant so much to me. I still can't watch it without crying, just to see how far Eddy has come in a year and to think about all the struggles he's had to endure between his first and second year of life. Watching it makes me realize how much God has blessed us in the past year, because even though we've had to go through a lot of difficult times, fear, anxiety, and sadness, He has gotten us through so much, and we have strengthened our relationship with Him and with each other as a result. And now, we do not take any of the "normal things" for granted that we used to, like being home instead of the hospital, going away for the weekend with Eddy, being able to go out to dinner and leave Eddy with a babysitter and not worry about him having a seizure every second we're gone. Life finally feels "normal" again, and it feels amazing.

This summer has been so wonderful. No seizures since the beginning of June, Eddy has been happy and healthy all summer, his development is improving every week, we've been able to take several quick trips away from home, and Ed has won four different basketball tournaments (that last part's for you honey :)).The ketogenic diet is getting easier every day, and although it is still extremely time-consuming and much of our day is spent preparing meals and getting Eddy to eat them, I feel like we're in a good routine with it. I've created more meals that Eddy likes, and now he isn't just eating the same thing all the time. He still eats a pancake every day for dinner, but I've expanded the flavors and his pancake menu now includes coconut pancakes, almond applesauce pancakes, coconut almond pancakes, pumpkin pancakes, zucchini pancakes, pumpkin zucchini pancakes, and macadamia nut pancakes. Other meals that he likes include flaxseed oatmeal, squash soup, avocado, and lamb with spinach and squash. I'm still trying to make his meals as healthy as possible, but I'm also trying to create foods that he actually wants to eat. Luckily he's still an amazing eater and really not picky at all. I am so thankful that this diet has been such a miracle. I was hoping for no seizures, but it's the minority of children who start the ketogenic diet who see a complete riddance of seizures; a lot of the time seizures are reduced considerably, but are still there. I'm hoping they continue to stay away for our sweet little boy.

Another exciting thing that has happened since my last post is that we have hired two wonderful nannies for Eddy (and to help me out with the twins once they are born). Eddy's babysitter last year, Mackensie, is one, and she will help me out 2-3 days a week. The other (the one we searched ALL summer for and finally found after interviewing lots of people!) is Amy, a school psychologist from the area, who will work the other 2-3 days a week. We are pretty darned blessed that both of our nannies have Masters degrees and experience with special needs children. We seriously could not have asked for better nannies! In the past couple of weeks, they have started coming over and learning Eddy's diet/supplements/schedule, and I'm starting to feel a lot better about sharing the responsibility of this diet and knowing that when I'm in the hospital in labor, they will be able to continue with it seamlessly and know exactly what they're doing. I was very worried for a long time about being gone and not having anyone else how to use the ketocalculator (the online program where you can create keto meals in the correct ratio and number of calories), and how to create meals and do all the weighing, but they have already pretty much gotten the hang of it, which has been a huge stress relief.

Regarding my pregnancy, I am 28 weeks pregnant with two little girls, and I still feel great! Knock on wood, this has been the easiest pregnancy, and I've felt great the whole time. I'm starting to really slow down with what I can do, and I'm trying to make myself sit down and put my feet up a lot more often than I'm used to doing (which is basically never!). It's been a huge help having Mackensie and Amy here the past couple of weeks, and my amazing husband has really stepped up big time. He wakes up with Eddy every morning at 6:30 am and lets me sleep in, and he puts Eddy to sleep every night - thanks honey, you are the best. :)

Well I just opened my fortune cookie from my chinese food from dinner, and my fortune says "Let's finish this up now, someone is waiting for you on that." I guess that's my cue to wrap this up. :)

Thanks for all of your support, love and prayers. They really do mean so much.

Weaning, Seizures, Meds, Ketogenic Diet

This blog post's title pretty much sums up in a nutshell what we've been doing since my last post almost two months ago. When I wrote that last post in May, Eddy was doing great. His development was improving, he was several weeks without a seizure, we were successfully weaning keppra, and life was good. As of May 8, Eddy was completely weaned off of keppra, his first seizure medication that he had been on since last August, and he was not having any seizures or negative effects from the wean.

I mentioned in my last blog post that I was worried about the week before we were supposed to go in the hospital because that week marked 8 weeks since his previous bout of seizures, and it was his "scheduled time" to have another bout of seizures. We were really hoping this time, since Eddy had been doing SO well, that the seizures would not come, but sure enough, literally to the day I told Ed he would have a seizure if he was going to, Eddy had a seizure. Starting on Wednesday, May 22 (two days before the full moon - Eddy has seizures one to two days before the full moon, but not every full moon, every other full moon - it's the weirdest thing.), Eddy had one seizure. The next day, Thursday, he had two. Friday, he had two, Saturday, he had one. Typically this would be the end of his bout of seizures and he'd be "good" for another 8 weeks, but this time, things got much worse the next day. We were at my brother's house for a cookout, and Eddy was playing in the grass with his toys. He started screaming and crying frantically, something he never does. We thought he got bit by a bug or stung by a bee. I picked him up and looked at him and his eyes were rolling back and then he started having a seizure. It's like he sensed the seizure coming and was terrified. The same thing happened about twenty minutes later. Then another ten minutes later. Because this was completely out of character for Eddy (normally his seizures happen when he is sleeping and he never cries prior to them), we took him to the ER. He continued having seizures on the way and when we got there. He had a total of seven, and we gave him an extra dose of klonopin, another one of his seizure meds, per the neurologist on call's suggestion. This seemed to help him, and his seizures stopped.  Because we were scheduled to go to Rochester in two days to begin the ketogenic diet and have a long-term EEG, and the next day was Memorial Day, the doctors in Rochester advised us to take him home Sunday evening.

Two days later, we packed pretty much everything of Eddy's into the car. We knew it would be a challenge to try to entertain him because he wouldn't be allowed to leave his hospital room for three days (he would be hooked up to the EEG and could barely walk at all.) Although we knew the week would be challenging, it was much more difficult than we thought it would be. Honestly, if my parents weren't there, I think I would have lost my noodle. They took off the entire week from work and slept at the hospital for two of the three nights we were there (I love you mom and dad - you're the best!!) At this point, my nervous, pregnant, hormonal self could not handle any more seizures. But the seizures actually got WORSE when we were in the hospital. Normally, Eddy would be in the clear from seizures and would be beginning his "8 weeks without a seizure" countdown. From Tuesday, May 28 to Friday, May 31, Eddy had, probably, 20-25 seizures. Luckily (for me at least), the bulk of those seizures, maybe 10-15, was overnight when I was not there, and my poor parents had to deal with the scary, terrifying ordeal from 3:00 am to 6 am on Wednesday night. On Thursday, the doctors came in and said that we weren't going to be able to go home until we got Eddy's seizures under control. One thing we could try was to re-introduce keppra, the seizure med that we had successfully weaned Eddy from two weeks prior. We did not think keppra was doing anything to help Eddy, and we thought that the seizure activity was more likely due to the lack of phenobarbital in his system (his phenobarbital level that week was only 16 - "therapeutic" is between 20 and 40.) If the keppra did not help, their next suggestion was to increase his phenobarbital or add another drug. Since we really wanted to get Eddy off of phenobarbital, we did not want to increase that dosage, so we were hoping the reintroduction of keppra would help, but we were not optimistic. But, as soon as they introduced the keppra back into Eddy's system, he stopped having seizures. They waited over 24 hours to see if he would have another seizure, and when it looked like things had settled, down, we were finally able to leave the hospital on Friday night.

 The only good thing about Eddy's seizures being out of control that week is that the neurologists were able to gather a lot of helpful information since he was hooked up to the EEG when he was having the seizures. What they found, in very basic terms, is that almost all of Eddy's seizure activity is now coming from the left side of his brain, which differs from much of Eddy's previous seizures, which came from all over his brain. His seizures are becoming less "generalized" and more "focal." The doctors said that oftentimes as babies/toddlers get older, their seizure focus becomes more clear and you can gather more information about where they are stemming from. Eddy has slow waves on the left side of his brain pretty much all the time, even when he is awake. This is a moderately abnormal EEG pattern, and it helps to explain why Eddy does not learn as fast as most children his age. We still don't know what is causing Eddy's epilepsy, or if he will grow out of it. We pray every day that he will, and we are looking forward to being able to get him off of all of this medication. Keppra is one of the only seizure meds that does not delay development, so we are not as concerned about him being on this one. The phenobarbital is still our biggest concern, and next Friday, which will mark four weeks since Eddy's last seizure (hopefully!), we will start decreasing the phenobarbital very slowly. Right now he is on one and a half pills twice a day. We will decrease his morning dose to one pill and keep his evening dose the same. We'll keep this dosage for about a month, and try to decrease it again. Please pray that we can successfully get Eddy off of the phenobarbital! It definitely delays development, something we cannot afford to happen right now with Eddy.

Since coming home from the hospital, Eddy has had a few more seizures, but he has been doing great for the past three weeks. He is definitely back to where he was developmentally prior to this setback. It always takes Eddy awhile to "snap out of it" when he has a bunch of seizures, and this time was no exception. He has made huge strides with his walking in the past month, and he is definitely more confident in himself when he walks now. He used to refuse to walk in public places, but now he wants me to put him down and grabs my hand away so he can walk on his own. He's starting to make more sounds again, although talking is a huge concern to us. I just want Eddy to say "mama" and "dada" on a regular basis. There have been several instances in the past week that he has said something that sounds like "mama," and I absolutely love hearing it. (He said more "ah ma," but still, it's close!.) Usually his word for mama and dada is "ah ah." We are hoping that speech will start taking off soon. Eddy turned 23 months old yesterday, and I can't believe my baby will be two next month!

So far I haven't mentioned the ketogenic diet! This has definitely been the biggest change in our life lately. It turned out that Eddy was already in ketosis when we got to the hospital. The vegetable-protein-fat diet that he had been on was basically the "modified Atkins diet," or MAD, which is an alternative to the ketogenic diet, oftentimes used in older children. Since Eddy was already eating all the foods he'd continue to eat on the ketogenic diet (I just needed to get used to adding a lot more fat!), it was not a huge change for him, but it was a huge change for us! With this diet, we have to measure everything to the nearest tenth of a gram. Eddy gets a very specific number of calories a day, in the ratio of 3:1 fats to carbs/proteins. For example, one of Eddy's favorite keto meals is a macadamia nut pancake. I crush macadamia nuts in a food processor. Then I take 18 grams macadamia nuts, 26 grams raw egg yolks (Eddy is sensitive to egg whites so I have to separate the yolk from the white each time. It's a pain but Ed and I have been eating a lot of egg white omelets as a result!), and 11 grams of organic canola or olive oil. I mix these together and put the "batter" on a griddle sprayed with cooking spray. Believe it or not, it cooks and turns out like a normal pancake! This is the closest thing to toddler-finger-food that Eddy can eat, and he has one every day for dinner. His other meals are more protein (ground beef, lamb, or turkey), vegetables (usually broccoli, carrots, or squash), and a lot of fat (coconut, olive, or canola oil). Eddy has already gained five pounds in the past two months, and he's getting to be quite the chunker. I emailed the ketogenic dietitian today and she said we will reduce Eddy's calories in each of his snacks, so hopefully that will decrease this crazy weight gain. He's been a trooper about the diet, and luckily he's still pretty good about eating. He has to eat and drink every drop of his meals/bottles, because his food is basically another medicine now. We have to make sure he stays in ketosis. We are really hoping this will be a miracle for Eddy. So far he hasn't had a seizure since about two weeks into the diet, and we're hoping this continues.

Another exciting event in our lives is that we just recently found out that the twins are both girls! I was beyond thrilled to find this out. I really wanted at least one girl, and when I found out both were girls, I was so incredibly excited. I keep thinking about all the cute girlie clothes I get to buy and what shade of pink we should paint their room. One reason I was so hoping for girls is because girls are like four times less likely to have autism, ADHD, epilepsy, etc. So that aspect was more "selfish" in that I really really just want them to be healthy. If this does turn out to be genetic and they also have the same problem, you will find me checked into a mental hospital. Just kidding. Sort of. I just pray they are healthy, and I pray that we will be able to figure out what is going on with our sweet Eddy, and we can help him to heal and develop.

Things have been great the past couple of weeks and I'm feeling so blessed. Eddy has been such a sweetheart and he is becoming more and more loving, attentive, and fun every day. He has won the hearts of his new babysitters (who we love and are a huge reason the past two weeks have been great - they give me a break every day for a couple of hours and it's so nice!) I hope things continue to go well and Eddy continues to progress developmentally. One thing I've realized lately is how fast things can change. I really hope that the next time I write a blog entry, I have good news to share! Thanks so much for reading, and thank you for all of your prayers.

TWINS and Other Mega Big-Time Changes

We are having twins! I know, it's crazy. It's still so weird for me to even say those words. We found out on April Fools Day, and I almost didn't believe the ultrasound technician...although when she showed me the other baby's heart beating, I couldn't really deny it! We are so excited now (it took a few days for the shock/fear/"I-can't-have-twins,-I-have-a-21-month-old-with-epilepsy" feelings to elapse, but I can definitely say that excitement is my overriding emotion now!) Ed was excited from the start (He's a man and I don't think men think as much about how much work it's going to be having twins; I'm pretty sure he was thinking "We're getting close to a basketball team a lot faster than I expected to!") We are due in November, but the babies could come in October. (I'm hoping they stay in there as long as possible though.)

So....that's big change coming up #1. Big change coming up #2 deals with our sweet little Eddy. We finally switched neurologists from Buffalo to Rochester. After months of waiting to get into our new neurologist, we had our appointment on April 22. It was a three and a half hour appointment, and we made sure to be very open and upfront about our goals and desires with Eddy, as well as all the natural/alternative things we are doing for him (because we didn't want a repeat of our last neurologist experience and we are more comfortable with our medical/parenting knowledge and are way past thinking doctors know everything. I think it's a good idea to have a team mentality with your physician, and make sure they are aware that everything is a discussion, and you aren't going to listen to every word they say just because they're a doctor. I still have a lot of respect for doctors (well, the good ones at least :) ), but I have just learned too much over the past couple of months to fully trust that doctors have all the answers, like I used to.)

Right now, we are taking Eddy to: a chiropractor once a week; a chiropractor/cranial sacral therapist/vojta therapist once a week; an acupuncturist once a week; a naturalistic doctor (ND) who specializes in autism and biomedical therapies once a month; a homeopathic practioner once a month; and his neurologist every so often, whenever he has an appointment. We also have Eddy taking lots of vitamin/mineral supplements, digestive enzymes, probiotics, fish oil, and a few other supplements. We have tweaked his diet even further from gluten free, casein free, to still GFCF, but now he really doesn't eat carbs or sugar at all, and his diet consists of 80% organic, cooked vegetables (this kid eats a TON of veggies!), and 20% organic proteins (egg whites, lamb, beef, bison, chicken, turkey, etc.) I also put organic coconut oil or organic olive oil on all of his food to give him the fat he needs. He drinks unsweetened flax milk and coconut milk and a lot of water. This kid is a healthy eater. We are extremely blessed that he will eat anything.

Another reason it is so important and helpful that Eddy will eat anything is because we are instituting another HUGE diet change at the end of the month. Eddy will be in the hospital in Rochester for about a week starting an intense diet called the ketogenic diet (Go to www.charliefoundation.org. if you'd like to learn a little bit more about the diet.) It's basically a very high fat, low carb diet (think Atkins on steroids.) Eddy will be eating 80% fats, and the idea is that his body will start metabolizing fats and will, in turn, produce ketones. When one's body is in ketosis, for whatever reason, it can help to control seizures. About 50-60% of people respond well to the ketogenic diet for epilepsy, and we are really hoping Eddy is one of them. I will have to weigh all of his food to the tenth of a gram, and it will be very important that he eats everything on his plate. It's a difficult, very stringent diet for anyone to follow, but I've slowly been preparing myself for this change, which is why I've taken out all carbs and sugar from his diet and started giving him the coconut oil. (A lot of the ketogenic diet revolves around heavy cream and butter, which Eddy can't eat because he's dairy free, so coconut oil and the fatty, canned, coconut milk will be a very important part of his diet!) I am going to continue feeding him all organic foods and nothing processed or artificial because his little body needs all the nutrients it can get. When the ketogenic diet really works, all seizure activity ceases, the child is able to get off of all seizure meds, brain waves normalize, and after two years, they are able to stop the diet and introduce a more well-balanced diet, and seizures stay away. That's the best-case scenario, and it's one we're really hoping for, but even if the mostly stops his seizures and improves his development, we will be very happy.


While in the hospital, Eddy will have a 3-day EEG (so the poor kid won't be able to even leave the room for 3 days!), and they will be mostly-weaning his phenobarbital. We have been waiting a long time to wean phenobarbital, and we are very happy it's finally happening, but we are also really scared because a normal phenobarbital wean is about 6 to 12 months long (it's a barbituate, and the body becomes addicted to it and goes through severe withdrawal if it is weaned too quickly.) Ed and I suggested weaning him down from 7 ml twice a day to about 3 ml twice a day while in the hospital, then we will slowly wean the rest over the next couple of months. The last bit of medicine is always the most difficult to wean, so I would feel more comfortable with this, even though we really want him off of the phenobarbital.

Eddy's new neurologist also said (and I've read this many times) that she would never prescribe phenobarbital to a baby older than 12 months because it delays development so much (which is the biggest reason we've been pushing to get Eddy off of it.) Eddy started phenobarbital at 14 months and will be on it until he's almost two. This year of Eddy's life is so crucial to development, and I'm so angry that his development has been stunted so much by the phenobarbital. I just hope that we see a lot of improvement when he's on the ketogenic diet and off the phenobarb.

Another change is that we are currently weaning his Keppra. He was at 3.5 ml twice a day, and now he's down to 2 ml twice a day. So far, the wean has been smooth and he hasn't had seizures (knock on wood!) I know it's been over two months since I've updated this last, so you're probably wondering about how his seizures have been. In the last entry, I wrote that he had seizures the last week of January/first week in February after going eight weeks without any. Well, Eddy went another eight weeks without any and had ten tonic seizures in one week towards the end of March. I'm really hoping the eight-week cycle doesn't continue, because he'd be due to have seizures the week before he's in the hospital, and that will be the week that we are finished weaning the Keppra. I'm hoping that all the prayers I've prayed and all the supplements/therapies/appointments Eddy has had are helping with his seizures and by God's grace, we won't have any that week. (I'd appreciate any prayers you could lift up for us about this!)

Eddy's development is finally starting to show signs of improvement, but for awhile there, we weren't feeling very encouraged. Because we're doing so many changes right now, it's hard to say what is helping, but something definitely is. In the past month, Eddy has been more attentive, more aware of his surroundings, more alert, has better eye contact, and his fine motor is starting to improve. He's still not talking, but he's starting to make more sounds. He's still very delayed (and the phenobarbital, as long as he's on it, will continue to delay him, I fear), but seeing progress is definitely encouraging. I'm not going to lie, it's hard for me to see toddlers that are around the same age as Eddy running around and talking and doing all the things toddlers are supposed to do; but I have to remind myself that Eddy is special, and he's coming along, albeit at his own, very slow rate. Eddy has had so many setbacks and barriers to his development, but he is working hard, and he inspires me all the time. He's such a sweet, special boy, and I love him more every day.

We aren't sure if Eddy is on the autism spectrum now, and a lot of his therapists and other professionals who have seen him don't really know either. Eddy is definitely not a clear-cut case. He has many symptoms of autism (not babbling, not pointing, a global delay, GI problems, especially constipation, a weak immune system), but he also has many very not-austistic qualities (he has a strong bond with me and Ed and my parents, he has a great social smile, his eye contact is good, especially lately.) One doctor last week said that she doesn't know if Eddy is on the spectrum, but she thinks he definitely has something going on with his central nervous system. The hardest part right now is not knowing what his diagnose is, whether we can heal him, what the best approach to healing is, etc. All that we know is we are going to keep striving, day by day, to do everything that we can to help Eddy, and we will continue to have faith that God is with us and is guiding us through this journey.

Changes

Hello everyone! It's been well over a month since my last post. There has been a lot going on, but I've had a hard time motivating myself to write anything. I definitely have the winter blahs. This winter needs to end already! Eddy and I had a nice escape to Orlando, Florida a couple weeks ago, and we had an amazing time there with my parents, but coming back to snow and cold and staying inside 100% of the time was pretty tough.

Eddy is 18 months old now! (Almost 19 months actually.) I can't believe he's already a year and a half. Then again, it feels like he's been around for much longer than that. Time is a funny thing.

He was doing so well with seizure control until Monday, January 28th. That would have been his "8 weeks without a seizure" date, which I was very excited about, but alas he had a short, tonic seizure during his morning nap that day. I didn't catch the actual seizure, so I wasn't 100% sure if it happened, but I noticed an odd arm movement on the video monitor, ran upstairs, and he was blinking his eyes and staring upwards and to the side, and that usually indicates he just had a seizure. I wasn't surprised because the couple days leading up to that, he was super twitchy in his sleep. The following morning, Tuesday, he had two quick tonic seizures at 5 am and 5:30 am. Then, Wednesday evening, when our good friend Father Dan Riley was over for dinner, I was putting Eddy to sleep, and he had another short tonic seizure. Then the following morning, Eddy had ANOTHER seizure during his morning nap. So, as you can imagine, that week was pretty horrible.And Eddy and I were leaving for Florida that Sunday.

I scheduled our trip back in November, when Eddy was first starting to do better. I didn't know if we were going to be able to go, but it was something "normal" that I was able to really look forward to and focus on. As it got closer to the trip, and Eddy was continuing to do well with seizure control, I was really excited, but also nervous that something was going to happen to make it so we couldn't go. So, when Eddy had five seizures less than a week before we were supposed to leave, I was so upset. As I got to thinking and talking to Ed and my parents, though, I realized that 1.) There was nothing that I was doing for Eddy after his short seizures that I couldn't do in Florida (actually there's nothing you can do for them anyway), and 2.) Getting Eddy outside in some fresh air and sunshine would definitely be better for him than remaining stuck inside at home.

So we flew out on Sunday, February 3rd, and after a rather stressful flight (Eddy was "that baby" that screamed throughout the airport and on quite a bit of the flight...luckily we sat next to an amazing couple who entertained and held Eddy and then walked us all the way through the Orlando airport until we got to my parents!), we settled in and had an amazing, relaxing, fun trip with my parents. My friend Scott, who works at Disney World, was able to get all of us into the parks twice, and I went a third day and met some friends from home who happened to be there too that week. (Thanks again Scott!) It was just such a refreshing, much-needed trip, and as the days went on, Eddy got more and more Eddy-like (happy, fun, smiley, not whiny), which was something I needed (He had been very crabby the weeks leading up to the trip. He was sick with a stomach bug, which turned into terrible constipation, and turned him into a miserable little boy. Then the seizures returned, which made him not sleep, and again turned him into a miserable little boy.)

The week before the trip, when Eddy was having all the seizures, I became the crazy, internet-research mom that I had been a few months prior when Eddy was first really sick. Except this time, I was researching more alternative, homeopathic, natural type stuff. (Which is very much "not me," but at this point I was willing to do anything.) The biggest reason for the change in perspective was our concern that phenobarbital is delaying Eddy's development. I've had many people, including doctors, tell me in the past month how terrible phenobarbital is for kids, because it does delay development in virtually everyone who is on it. And it's not supposed to be a long-term drug because of its terrible side effects. Sometimes we look at Eddy and he is in his "phenobarbital bubble," which is what we call his zonked out, not with it, staring-off-into-space mode. I hate knowing that we are giving Eddy drugs every day that are hurting his development. On the flip side, phenobarb has stopped Eddy's big grand mal seizures. I'm very grateful for that, but at the same time, he hasn't progressed much at all in the past couple of months. He's not babbling anymore, like he was a couple of months ago, and he's not signing any more words. So, in short, he needs to get off the phenobarbital.

So, as I was saying, I've been researching alternative forms of medicine. In the past month, I have read SO much on the internet about diet, nutritional balancing, chiropractic care, toxins, mineral deficiencies, foods that trigger seizures, etc. We've opened up and expanded our minds to a whole different world of medicine. It's easy when you live in the US to be very "western" in your thinking when it comes to medicine. Most of us grow up going to the doctor and being put on medication when we are sick. And sometimes, that's fine. It's not fine when there's a chronic condition, where there has to be an underlying cause, but all western medicine wants to do is to continue to "put a bandaid on it" and prescribe medication, especially when that medication is determinental to development, and oftentimes, health as well.

When Eddy's neurologist returned my phone call that Tuesday at the end of January, and I told him that Eddy had had a couple of short, tonic seizures (for the first time in eight weeks remember!), he immediately said, "Maybe we should add a fourth drug." I remember just standing in the bathroom at the Beef and Barrel with my mouth wide open, thinking, "After eight weeks of NO seizures, this doctor thinks a fourth drug is the answer." I wanted to scream, "THAT'S THE LAST THING EDDY NEEDS!" but I refrained and said, "No, I don't think so." I forgot to add that a couple of weeks prior, we had attempted to decrease Eddy's phenobarbital from 7.5 ml to 6.5 ml. At the same time, I introduced a lot of soy (because I was taking dairy out of Eddy's diet to see if that might help with his constipation.), and later I read that soy is a food that commonly triggers seizures. So was the cluster of seizures that week a result of the decrease in phenobarb, or was it the soy? I don't know. (Someday I will learn to introduce changes one at a time for Eddy so I actually know what the cause is!) But, basically what I'm saying is, there is a reason, whether it's the decrease in meds or the soy, that Eddy had seizures. And obviously eight weeks of no seizures is a great thing. So another seizure med that delays development is not the answer!

Hence the crazy-mom-internet-alternative-medicine-researcher-mode.

A few people during this time recommended that I take Eddy to a chiropractor to see if they could help Eddy's constipation and digestion issues (which I strongly believe are connected to his epilepsy...actually at this point, I'm convinced all his issues - delay, digestion, seizures, potential food allergies - are related.) So, a chiropractor in West Seneca, Dr. Bova, was recommended, and last week, we took him for his first appointment the same day as his EEG. Dr. Bova stated that Eddy's C1 vertebrae, called the atlas, was shifted pretty far to the right, and he said this probably happened at birth. He recommended bringing Eddy in at least once a week for adjustments until he is realigned. On the hour ride home, I was researching atlas misalignment and reading everything I found to my dad (who has been helping me with all of Eddy's appointments to Buffalo lately - you are the best, dad!!). Honestly, I was pretty shocked at what I found. I read that, when the atlas is misaligned,  "the interactive communication between the brain and the rest of the body is disturbed, which can lead to a neurological deficit." Consequences potentially include delays crawling, delays walking, constipation, even seizures! On that drive home, my dad and I decided to take Eddy twice a week for the next few weeks to see if the adjustments help at all. At this point, Eddy has had three adjustments, and he is already walking much better than he was a week ago! Is it a coincidence? Maybe. But Eddy has been stuck at about the same point with walking for about a month now. He'd take 5-10 steps and fall because his balance wasn't great. But for the past week, Eddy has been consistently taking 20 steps at a time, and the reason he'd stop is because he reached what he wanted to get to.  Ed and I decided today that Eddy is past the "taking steps" designation and is, in our definition, at the "actually walking" designation! We are going to continue the chiropractic adjustments and see what happens. I'm very encouraged and hopeful at this point.

Eddy's neurologist, on the other hand, was not so happy about the chiropractor. On Friday, Eddy had his first neurology checkup in a few months. When I brought up the fact that we just started taking Eddy to a chiropractor, his neurologist said that if we continue taking him...wait for it...he can NO LONGER BE EDDY'S NEUROLOGIST!!!!! I have to say, I respect this doctor, I know he is very knowledgeable and intelligent, but this is going way too far. I'm not asking him to go to a chiropractor himself, and I'm not saying he has to even be happy that we're taking Eddy to a chiropractor. But the fact that he would threaten to "fire" Eddy if we independently take him to a chiropractor (which could very well HELP him...status quo right now after months of medication is a developmental delay, meds that cause Eddy painful constipation, and unchanged brain waves...and the desire to put him on more medication!), is just so inflexible and egotistical. So, we are changing neurologists.

We got the results of his EEG back, and unfortunately it's unchanged from Novemenber. It was still abnormal, and his brain waves are pretty much the same as they were a few months ago - normal when he is awake and abnormal when he is asleep. We were hoping that his EEG would have gotten better, especially because he's been doing much better seizure-wise, but unfortunately that wasn't the case. If this whole situation has taught us anything, it's that prayers are not neccesarily answered on the time-table we expect, but flickers of hope have kept us searching for the right answer.

Hello, 2013!

Wow it's been over a month since my last post! I'm getting to be a slacker with this blog. But looking at past history, no news is good news with us, and that remains true. Eddy has gone five weeks without a visible seizure! And until the past few days, he has also remained healthy (despite the craziness of the holidays and everyone he came in contact with!) He currently has his first bout with the stomach flu, and it's definitely not fun for any of us. I feel so bad for him because he's very obviously miserable. He's vomiting, constipated, has tons of gas, and doesn't really want to eat or drink. He also has a low-grade fever of 100.0 degrees. He's currently sleeping without seizure meds in his system (he couldn't keep them down either time we tried giving them to him this morning), and he has a history of having seizures when he's sick, so I'm really hoping he remains seizure-free. I have the video monitor right next to my computer and I keep glancing at it every five seconds or so. He's remained in the same spot for thirty minutes, which is not like him (normally he tosses and turns like a crazy person), but I think it's because he's just so exhausted.

If you could say a prayer that he gets through this stomach bug quickly and without having any seizures, it would be much appreciated.

But like I said....Other than this current bout of sickness, Eddy has been doing great the past several weeks! He took his first steps and we got word (finally!) from the genetics department at Buffalo Children's that the Dravet Syndrome test was negative! Basically that means that Eddy's seizures are not caused by a gene and this is such great news because now we don't have to worry as much about future children! We are extremely relieved, especially since it took three months for us to get the results back! (They ran out of Eddy's saliva and he had to give them more saliva and then they had to re-send the saliva to the lab in...wherever it was...and then they had to finish testing the genes that they couldn't test without more saliva...)

 Our attempt at a family Christmas picture by the tree

Eddy has been working hard and improving physically. He really really wants to walk, and he has been trying to for the past few weeks (so far, the record is 11 steps according to my husband); but his body isn't really ready yet. He skipped that whole, really important step where you learn to balance by standing without holding onto something for awhile. Yeah, Eddy has stood on his own for maybe a second, and then he started trying to take steps. And when he realized how fun it was to "walk," he kept trying to do it. Thank goodness for his helmet because he has fallen so many times (and he has face-planted so many times, which unfortunately the helmet does not protect...but at least his platelet count was 352 right before Christmas, so we don't have to worry about internal bleeding. :) ) He gets right back up, and tries walking again. That kid is one of the most determined kids on the planet. He's also one of the least careful. He doesn't really have that sense of, "Oh, I just did this and hurt myself, so maybe I shouldn't do it again." He'll do it again. And again. And again. But at least he's persistent. And with persistence he will get places. He might just get there slowly and with a lot of bumps and bruises. :)

Eddy just woke up after 50 minutes asleep and I had to rock him back to sleep...This happens almost every time he naps, although 50 minutes is longer than usual that he'll stay asleep. It's normally anywhere from 20-40 minutes. He'll be half asleep and obviously still tired, but he'll start climbing. He knows that if he starts climbing, mommy will come running (literally) into get him, because he has a tendency of falling backwards like a log and hitting his head on his crib if mommy doesn't come running immediately to him. I'm not sure if he climbs in his sleep or if he's just half asleep, but I'll pick him up, take him to the recliner rocking chair in his room, and rock him for about 20 minutes and put him back down in his crib. I don't know why he does it, if it's because he wants me to rock him, or if he legit has a sleep-climbing problem (like sleep walking). Does anyone else have a toddler that does this? It's frustrating because I did the whole sleep-training thing for 3 weeks straight when Eddy was 5 months old (I did the Baby Whisperer's Pick up/Put down method where you pick them up when they cry and put them down when they stop. I wanted to kill myself for 3 weeks but I finally got him sleeping on his own and I didn't have to rock him to sleep...He actually turned into quite the amazing sleeper for a few short months until his seizures started.) Then, when he started having seizures, I started consistently rocking him to sleep (because he'd have seizures either when he was falling asleep or when he was waking up so I didn't want him to fall asleep on his own.) So now, basically, I've created a monster. Eddy is not a good sleeper. But he has it in him because about once a week, he'll sleep for 9 hours straight. The rest of the time, though, mommy and daddy are spending an awful lot of time rocking him to sleep in his room.

I'm not a fan of the cry-it-out method (I know a lot of my friends did it and it worked for them...but it's just not me...especially now with Eddy's epilepsy)..I used to let Eddy whine a little bit and a lot of the time he'd put himself back to sleep, but now with the video monitor and the climbing, I RUN every time he wakes up (because 9 times out of 10 he goes from being asleep to climbing in 2 seconds...very strange kid we have. :) ) So does anyone have any suggestions/thoughts that we can do so that Eddy doesn't rely on us rocking him back to sleep every time he wakes up? (Again, I know he CAN self-soothe because on those nights where he sleeps for 9 hours, he'll wake up a few times and toss and turn but put himself back to sleep.) Any thoughts would be appreciated. :)

So it's only a week into January, but I already hate tax season. Ed, my husband, is a CPA (he actually has his own firm), and he is extremely busy from January to May. It's hard taking care of Eddy all day on my own when he's healthy, but when he's sick one day feels like about three. Eddy is quite the high-maintenance kid. He's always on the move and always needs to be entertained. I can't wait for my babysitter/helper Lindsay to come back to St. Bonaventure to help out again. She comes over a few times a week for an hour or two to watch Eddy so I can shower, get some housework done, go grocery shopping, etc. I didn't fully appreciate how amazing this help was until she went home for Christmas break (I miss you Lindsay!! When do you come back???? :) )

Although I'm very very happy and thankful that Eddy has been seizure-free for five weeks and is progressing physically, I've been getting pretty worried lately about his development in terms of communication. I've heard a lot of people say that when babies are focused on one area (physical progress), the other areas tend not to see much improvement, and I'm hoping this is true. Eddy stopped babbling like he was doing for awhile there (he replaced it with raspberries and screaming), and he isn't clapping anymore. He does love giving kisses, and I found that he will kiss things I instruct him to (i.e. "Eddy, kiss the hippo's eyes," "Kiss mommy's nose, etc.), so I do think he understands things, but he doesn't point, or wave, and the only thing he signs for is "video" and "phone" (He's quite the technological little kid.) I know that 18 months is when they say you should be concerned about a lack of imitation in terms of signs of autism, and he'll be 18 months in just a few weeks. I wish I could just enjoy him where he's at and appreciate the improvements he's making, but it's really hard not to worry.

Well, that about sums up the past month. I'm very excited about a new year, and I'm optimistic that 2013 will be much better than 2012! Thanks for all of your prayers, as always. <3