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.
