10.26.17 Acid Reflux and First Primary Children's Appt

We are officially 2 weeks Keppra-free with no seizures! This is the longest seizure-free streak we've had since they started in July and we're thrilled! I'm finding myself enjoying Bennett and enjoying the little moments every day without waiting with bated breath for his next seizure a lot more frequently and it has been SO nice. I feel overall more relaxed and hopeful than I have in a few months and it has been much needed.

Yesterday we saw Dr. Van Orme at Primary Children's hospital yesterday morning because they had a last minute opening (we weren't supposed to get in for another 4 months...). Van Orme was pretty old, but he was kind and patient. I think the appt. was almost 2 hours with him answering all my questions about medications and treatment plans. I told him I wanted to get Bennett off all AED's as soon as possible, and maybe CBD was the answer to that, but he was not a fan of that plan. He was pretty adamant that phenobarbital can be perfectly safe and he has plenty of patients on it with no cognitive impairment or delays. This flies in the face of about 90% of people's experiences I've heard and read about with their kids on phenobarbital. He offered up a couple different drugs we could try instead if I feel uncomfortable with it, but didn't seem too keen on the plan. He did order a nocturnal EEG for us, which I wanted because in the last week I've noticed Bennett having seizure-like activity at night where he wakes up around 2 am and convulses and then screams until he finally passes out an hour later.

We also went to see Dr. Morita yesterday because we had our follow-up scheduled with her a month ago and I decided to just keep both appointments to get a second opinion. She agreed about trying the nocturnal EEG and suggested an ambulatory one if the first EEG doesn't capture anything. That would be 3-4 days of Bennett being hooked up at home to the equipment, but I'm trying to avoid it because it sounds miserable to me, haha. But it can give us more data to work with, which would be worth it. She was clearer on which medication she recommended and agreed that Phenobarbital is a drug we want to get off ASAP because it DOES cause developmental delays. We decided to switch to Zonegran, but first we'll get the EEG and then slowly ramp up the Zonegran to therapeutic levels and then wean off the Pheno. I was happier with our appt. with Morita, and I think we'll continue to work with her. She seems to be a little more up on the current research, and is supportive of CBD as an option for Bennett.

The other notable developments this week are brought to you by Ranitidine. Ranitidine is the generic for Zantac and Bennett's been on it since he was about 4 months old because he's had pretty bad reflux. Now, Dave has never been convinced that he actually has reflux, and last month he convinced me to take Bennett off the Ranitidine to see if it really was making a difference. After about a month and a half of AWFUL sleep (not that he's ever really had great sleep, but this was worse than normal), we finally put him back on it a few days ago and Oh. My. Gosh. I will never forgive Dave, haha. Bennett's a totally different kid again! He was SO irritable and screaming in pain almost the entire day this last week and now he's content, plays by himself, sleeps longer than 2 hour stretches at night, and doesn't seem to be in pain! Needless to say, we are going to stay on the Ranitidine a little while longer.

The last few days have been awesome with him being so content and sleeping well, we're crossing our fingers he stays like this and remains seizure-free!!

Also, he CLAPPED!!!!!!!

10.20.17 Little Victories

It's been 8 full days of no Keppra and I feel like I have my Bennett back! He's still definitely not where he should be with his milestones yet, but he is SO much more interactive and interested in us it feels like he woke up from being a zombie the last three months. I had a lot of moments of reflection this week for some reason. I'm finally feeling pretty close to normal (as normal as it gets in pregnancy for me) so I think I have more energy and emotional space to dedicate to Bennett right now than I have for the past 20 weeks. But also because since we started weaning the Keppra we've just seen such amazing changes in him, it's hard not to sit there in awe and just soak it in sometimes.

I meant to write a few different days this week because I didn't want to forget what it felt like during those moments of reflection, but this will have to do because we're working on our Lehi house like crazy and by the end of the day I'm barely awake enough to get ready for bed--let alone write my feelings down. 

The first day of no Keppra (October 11th) Bennett started a new thing that I was worried about because it looked like an automatism to me which can be a sign of a seizure happening. He started sticking his tongue in and out back and forth and kinda spacing out while he did it, and then snapping back and fussing for a few seconds. I took probably about 8 minutes of video throughout the night trying to catch him doing it so I could show Dave and see what he thought. We decided to just keep watching and see what came of it and that night as I was putting Bennett to bed I held him in my arms as he finished his bottle and we cuddled for just a minute or so, but I copied him after he stuck his tongue in and out and he just beamed at me and repeated it!! He hasn't mimicked our gestures since before the seizures started and my heart just leapt when he did it that night. I was still cautiously hopeful because I didn't want to rule out an absence seizure or anything that might be happening with a Keppra withdrawal, but I was hopeful! He was copying me! I stayed and held him probably another 10 minutes just going back and forth with him trading smiles and sticking out tongues with him. I felt like for the first time in a really long time he actually knew who I was and was happy I was playing with him and he wanted to play with me too! I can't describe how much that meant to me in that moment. I'm pretty sure I was beaming the whole rest of the night. 

His sleep still hasn't been great since the wean. We had a sweet spot where I think we were on 1 ml 2x a day where he was only waking up once during the night which was HEAVEN, but he's back to his normal antics of every couple of hours wanting a bottle. That's a bummer, but we're hopeful that might level out the further out from the wean we get. Even with the lack of sleep though, he's been SO much more content overall. He had the best Sunday (October 15th) he's ever had in church with us. Hardly any fussing, actually stayed content so we could stay in sacrament meeting without having to walk with him, didn't fall asleep until we got home for nap time, etc. It was so great. 

On Monday (October 16th) he took a 2.5 hour nap in the morning and a 2 hour nap in the afternoon which was AMAZING!! And he's had no problem settling himself down without the swaddle now even though he did regress there for a few days last week after the last dose. Now he'll play in the crib until he falls asleep and he sort of just talks to himself, which is so fun to hear. For so long we only ever heard noises of discomfort or frustration from him--it's a totally different world to hear him babbling happily! 

On Wednesday we had probably the sweetest moment for Dave and I this week, though. I was feeding Bennett lunch in his high chair and he was distracted so I made a loud deep noise at him which startled him and he started giggling! I did it again and he just cracked up harder and harder the more I did it. I used to always be able to get him to laugh back and forth with me like that whenever I would make a silly noise or scare him a little, but the last time that happened was at Dave's family reunion, which was about a week before the first seizure. I honestly had forgotten how easy it used to be, and how much joy it brings me to see him laughing so hard because of something I'm doing. I whipped out my phone real quick--grateful to be trying to film him laughing rather than seizing--and caught a couple seconds of it to send to Dave. I sent him the video and said "We have our Bennett back!!! <3". Once he watched it about an hour later he texted me that watching the video brought tears to his eyes. He was so happy to see him laughing so carefree like that and fully engaged with me. He told me later that night that his coworkers were kind of teasing him because he was tearing up watching the video, and he was just trying to get them to understand that there was a time just a few weeks ago we were worried we would never hear that from him again. We didn't know if we'd ever be able to interact with him like this in his lifetime and this was just the sweetest gift to see this part of him back with us again.

I don't know that anyone can really ever understand the heartbreak a parent goes through when they watch their child slowly slip away from them--one skill, one personality trait, one smile, one day at a time. And the heartbreak is even more intense when the future is unknown. He could gain all this back and we could live a mostly normal life with him...or this could be the beginning of losing him completely. There's just no way to know, and the best we can do is try to enjoy him where he's at and try not to think about the things we miss about him or the things we know he'll never be able to do. One blog I read put it this way, "It's difficult for me when every birthday I watch my 8 year old open yet another baby toy, when other kids his age are getting new bikes or roller blades. But I just try to get through the birthdays as best I can--they're the hardest because with them comes a reminder of what my child can't do." I think because I've prepped myself mentally for Bennett's seizures to get worse and for his development to go downhill from here just in case that's his lot in life, every time he makes some progress or relearns something he forgot feels like a huge gift--something most parents wouldn't think twice about, but I hold onto for dear life. 

I've watched that video probably a hundred times by now (2 days later), just grateful to hear his laugh and see the way he looks at me during it. I can't really describe why I come close to tears every time he reaches for me now "because I'm his mom" when before, he literally looked at me the same way he did every other adult in the room. I noticed I had the thought today "This kid's gonna be walking soon!", which feels so vulnerable and exciting at the same time. He really does seem to be learning and improving his walking (skipping crawling completely at this point...), but I know all it takes is one bad seizure to bring a regression, so I still try to keep my expectations in check. But I can't help but get excited when he smiles at and wants to play with the Christmas decorations at Home Depot. It's just been so long since I've seen him so engaged in life and other people, I go to bed every night just praying that he stays like this. 

I told Dave a night or two after I'd had Bennett and he was in the NICU in the hospital (for a fever that ended up being nothing) that I finally understood what people meant when they talked about loving someone so much it hurts and is terrifying. I told him if anything happened to Bennett I wasn't sure I'd make it. I think I could handle it if something happened to Dave, but I just couldn't go on if we lost Bennett. That thought has echoed in my head this past week. I've never felt so vulnerable in hoping for something and loving someone as I do right now with Bennett. I want things to stay good so badly and I'm terrified of when his next seizure might hit. But right now we're a month seizure free and fully off of Keppra--which is incredible. The next step is to get him off the Phenobarbital if we can to make sure it's not causing developmental issues either (since he's still way behind). We have an appointment this week with Dr. Morita so we'll see what she says.

I think that through all the tears and prayers and heartache with this journey so far, this week has been overwhelmingly filled with a feeling of gratitude. Grateful that he's still here with us. Grateful that he's trying to interact with us. Grateful to hear him laugh. Grateful for no seizures. Grateful to be done with the Keppra. Grateful he finally cut his fourth tooth! Grateful he knows who is Mom and Dad are now. Grateful to feel loved by him. Grateful for every second at night I get to hold him close to me as he drifts off to sleep. And grateful that because it feels like this all threatened to disappear after the seizures, I'm able to enjoy it a hundred times more intensely and really live in each moment with him. I don't think many parents get that opportunity and although I think I'd rather pass on the whole experience, I'm grateful for it right now. I try not to take any second for granted and it makes me love him that much more. 

10.12.17 Meeting Chantel

Today we met Chantel from Kids on the Move, who will be working with us from here on out on meeting our goals and monitoring Bennett's progress as we work on his milestones and basic skills. She was great and Bennett took to her right away. He even gave her a few smiles! She was surprised he was doing as well as he is right now based on his assessment results. I explained that he's improved a LOT since we went off the Keppra and she took that as a good sign that maybe part of this has just been struggling with the medication side effects.

She took about an hour with us to ask me what we wanted to prioritize working on and what our goals were going to be. We decided that we want to achieve:
   - 2 words by 18 months (I think) that he knows the meaning to
   - Able to follow 1 simple direction like "pick up the ball" or "come to Mama".
   - Able to mimic a few gestures like a wave or blowing kisses.
   - Crawling perfectly.
   - Able to get in and out of sitting on his own and safely.
   - Have him evaluated by a Physical Therapist and a Feeding Specialist soon to make sure there are no physical issues we're dealing with.
   - Eventually work with a speech therapist, but not until we have a little more progress with his language skills--mostly understanding what we're saying.

We are probably going to attend their infant massage class in a few weeks where I can learn how to do it with Bennett, which is great, because I've tried infant massage with him before and he always seems to hate it. It would be nice to learn what kind of touch he enjoys to be able to use it as a soothing mechanism.

Overall, it was great to meet Chantel and she showed us a bunch of things we can try with Bennett for the next two weeks for his gross motor and language skills. Mostly, we just need to force Bennett to use his muscles to sit up, lie down, use his knees to pull to standing (instead of just lifting him), and some exercises to strengthen his core while he keeps his head up so he can get his belly off the floor when he crawls. Bennett seemed pretty exhausted after about 30 minutes of exercises, and he didn't enjoy it, so it's gonna turn playtime into more of a battle every day--and more proactive engagement from me, but I'm trying hard to commit to it! I want to help him as much as we can right now, and he seems to regress when we're not actively working on things, so I don't want that to happen. Hopefully we start to see some progress with the exercises.

10.10.17 Developmental Delay

About a month ago now, it honestly feels like a year ago, but it was only a month ago (9.9.17) when we took Bennett to get some 9 month pictures done at a place around here called Camera Shy. It's an expedited process where they have a bunch of different props and backgrounds to choose from all in the same place and you get about an hour and a half with a photographer and can just choose what pictures you want to get. We hadn't done pics of Bennett since he was a newborn and he was finally able to sit on his own for longer than 2 seconds, so we figured we would get them done one Saturday.

When we got there the photographer really expected Bennett to be able to smile and giggle and respond in a much more interactive way than he was able to. We had to jump up and down with props and noises and practically scream to even really get him to look at us--let alone crack a tiny grin. I think we maybe got one full smile the entire session, but for the most part it was a dead-pan blank stare from Bennett.

I don't know if it was just because this was the first time someone had vocalized that they expected him to respond more than he naturally did, or if it was because this was the first time I'd been feeling semi-functional enough to engage with Bennett in this energetic of a way since early July, but I walked away from the session feeling pretty unsettled. We've always said that Bennett's a "serious" baby, he's just "taking everything in", you really have to "work for smiles" from him, etc. But everyone had reassured us that babies develop on different timelines and they all catch up eventually so it wasn't worth losing sleep over. Of course, this was all before his brain regularly spazzed out on him and he was put on anti-seizure meds meant to essentially shut down his brain.

At this point I went home and started researching the developmental milestones a little more vigorously than I had before and I finally concluded that Bennett was about 3 months behind on most of them--if not more on others. Even still, I know babies can have a range of about 6 months where they could hit the milestones late and be totally fine, so I still wasn't freaking out yet.

The freakout came a couple of days later when after I had done some of my own tests with Bennett (called his name to watch for his response, tried to engage him in interactive play, watched if he caught himself when he fell, watched his attempts at crawling more closely, etc.) and was flipping through old videos on my phone of him pre-seizures that I started to realize that we weren't just dealing with slowed development--he had actually regressed since the seizures started. I didn't remember that before his first seizure he was mimicking our sounds and facial expressions, smiling spontaneously and with just the tiniest stimulus, laughing regularly, and checking in with us while he was playing or exploring. I honestly thought that he had never tried to talk at all and rarely smiled or responded to us because that was all I could remember since the seizures started.

My heart broke when I watched the video of him on the bed of our hotel in Toronto in July (we were there for an MFT conference I was presenting at) smiling and giggling, copying my sounds, and trying to communicate so eagerly with me. How had I forgotten how my happy Bennett used to be? How had I blocked all of this out of my memory? I guess when you're living with your baby every day you just assume their progress will be forward, not backward, and since the regression was probably subtle over the months, it was easy to forget the skills he'd once had. But now it was becoming clear to me that something had happened with him when the seizures started and he was now regressing developmentally.

In the seizure-world, you learn fast that the answer to almost everything is "we don't know", because we basically don't know anything about why, how, or what happens when someone has a seizure or when, why, how, and what medications work to stop them. The one thing that had been made clear to us by the professionals, though, was that as long as his development remained on track and we weren't noticing any huge changes after the seizures they were probably benign and not causing damage. So to acknowledge that I thought he was not only delayed, but had actually regressed from where he'd been pre-seizures was terrifying, to say the least.

When there's a developmental delay and seizures together, the likelihood of there being a genetic cause like a specific seizure syndrome skyrockets (as opposed to this just being benign childhood epilepsy he'll grow out of). This is bad news because the seizure syndromes recognized right now range anywhere from being a mild lifelong inconvenience to growing out of the seizures after childhood, to promising a total lifespan of about 2 years. And of course there's no gauranteed way of knowing if your child has a specific syndrome or not and they probably won't fit the exact description for any of them, so you find the one that seems closest and go from there, essentially. There is genetic testing you can do which will highlight certain syndromes which are known to have something to do with certain gene mutations or deletions, but even these are only accurate about 80% of the time.

The other complicating factor is that anti-seizure meds are all basically renowned for causing developmental slowing or delays as well as grogginess, sleepiness, irritability, etc. So there's a possibility that Bennett's regression actually has more to do with the meds we put him on than the actual seizure activity he's had. But there's no way to know that unless we take him off the meds and see a difference--which is a risk because then he may start seizing regularly again, and for all we know, it has nothing to do with the meds and he's just got a seizure syndrome that causes developmental delays as well as seizures and this is just something we have to live with forever and can't really do anything about.

Either way, we started with Kids on the Move, which is the birth-3 year early intervention program here in Utah for kids with developmental delays, autism, sensory processing issues, etc. They came and did an assessment for free to see if Bennett qualified for services and he definitely did, so we've been seeing someone every week since we started and are about to set up his different therapies and classes to help with his development as much as we can. I'll write about the different steps of that process separately because I want to record it all while I still remember it.

10.9.17 The Keppra Wean

Some days are easier than others. Some days I almost forget Bennett has had over 40 seizures in the last 3 months. Or that it isn't normal for a 10-month old be such a pro at taking medicine from syringes multiple times a day. Some days I can forget the last time he stopped breathing in my arms. The last time he convulsed unconsciously for minutes on end while I held him helplessly. I forget that we have no idea what the rest of his life holds--or ours, for that matter--as far as his health is concerned. I just enjoy watching my baby play with his dog, smile when his dad throws him up in the air, swim in the bath, and other normal baby things.

Other days are harder. Today's a hard day for me. We're weaning Bennett off of the first medication  (Keppra) he was put on back when the seizures first started in July because I'm worried about what the side effects are doing to him developmentally and it doesn't seem like it's controlling the seizures anyway. So even though I feel relatively confident that this is the right thing to try right now, I'm terrified. There's something about being on medicines that feels proactive--even though in reality, he's probably better off without this one. It's scarier to feel like we're not giving him every medicine we possibly can than it is to just keep throwing medicine at the problem hoping something works eventually. 

It's been 2 weeks since we started the slow-wean and I feel like I've gotten pieces of my Bennett back every day. He responds to his name a little more frequently now, he can put himself to sleep without a swaddle most of the time, he eats food again and takes his bottles more easily, and the best thing is that he seems less upset all of the time. But also since we started lowering his dose I feel like all I've been doing for days on end now is staring at him intently--just waiting for the first sign of the impending seizure to start. Every time he's quiet in the car for more than a minute or so, I look back there to make sure his eyes aren't pinned or glazed, that his hand isn't twitching, his head isn't dropping. Every time he strains to poop I hold my breath afraid he's about to turn blue. Every time he hits his head on something, I immediately scoop him up just in case he starts seizing because of it. And every time he gets out of the bath my heart beats a little faster with the fear that we could be about to relive that first night he seized.

He actually hasn't had any withdrawal or rebound seizures since we initially lowered the dose, which is a great sign--except I personally think it bolsters my argument that Keppra was never helping in the first place, and may have actually made his seizures more frequent. But tomorrow night we'll be giving him his last dose and then he'll be fully off of Keppra. Relying on just the Phenobarbital (the second med he's on) to control his seizures. Some people do fine when they come all the way off Keppra--others start to see massive increases in seizures, and we're just sitting right in the middle of not-knowing right now. I guess they can have rebound seizures up to a week or two after the wean is complete, so this ambiguity will continue until then at least for now. 

My friend asked me yesterday what I'm most scared of happening after his last dose tonight. I wasn't completely honest with her because I wasn't ready to say it out loud yet, but I'm terrified that if we can't control the seizures he'll have one that lasts long enough that we can't stop it on our own and he'll end up in the hospital fighting for his life. We've been lucky so far that his longest seizure was just 10 minutes 2 weeks ago and it stopped on its own, but even that was scary because it was an increase from his typical 5 minute seizures. Which means there's a chance they could ramp up and continue to get longer and scarier unless we figure out the right med cocktail to keep them at bay--which unfortunately seems less common the more I research about idiopathic epilepsy at this young age. 

Here's to hoping the Phenobarbital continues to do its job and we don't have to go through any Keppra withdrawals or rebounds after tomorrow night. Wish us luck! 

10.2.17 Health Screening

Bennett had his health screening from Kids on the Move today. The nurse came out to our house to test his hearing and eyesight to rule those out as possible causes for his lack of responses. I think Dave and I were both holding out unspoken hope that we might uncover a hearing problem that would explain his lack of interest in us or other people around him because we both suffered from major ear problems when we were kids.

Unfortunately (or fortunately, depending on how you look at it), his hearing and eyesight tested perfectly. This is great because it means we're not having to look at tubes or fighting any of the obnoxious ear stuff Dave and I did as kids, but we both admitted to each other that night that we were a little sad because we had hoped just a little that all of this might be easily explained away as a hearing problem--rather than a neurological one. Hearing seems like a much easier battle to tackle than neurological issues.

Similarly, I took him to the chiropractor today (who has always been a little worried about him neurologically because his reflexes have never been quite right since he was born) and asked him to assess any physical limitations on his ability to crawl. He said Bennett checked out perfectly and there didn't seem to be any physical reason why he couldn't get his knees under him to crawl, so his first guess would be a neurological disconnect of some sort that's preventing him from being able to coordinate the muscles correctly. I felt the same way about this as I did about the hearing results. I was maybe hoping a little more than I was admitting to myself that I wanted this to be a simple physical therapy fix, and it was hard to swallow that by all accounts he should be able to use his muscles correctly by now.

He was out of alignment again, so we'll see how he does after the adjustment, and we still don't know if the medicines have played a role in the delays, so I'm trying to hold out final judgment until we can have more clarity. After a week of lowering the Keppra he is DEFINITELY more responsive, engaged, less fussy, sleeping better (putting himself to sleep finally!!!!), eating more readily, and overall a little closer to pre-seizure Bennett than we've seen in months. So I have high hopes for when he's off of it completely.