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.
