2/4/18: First Seizure After 3 Months and 5 Days--Restarting the Clock.

Well, this is a hard post to write. Particularly because the last one was so great to write. Yesterday we were 3 months and 5 days seizure free. Today we are back to 0. That's a mental trip. And it's hard. The main thing helping us today is that the Bennett we had this morning pre-seizure seems like the same Bennett who woke up post-seizure, which is not always the case with SCN8A kids' seizures. Our particular epilepsy syndrome is known for unexpected severe seizures causing major regressions in development (some so damaging that kids have woken up and lost years (YEARS) of milestones and are back at infant-level capacities...we're talking can't even hold their own head up anymore).

I was still upstairs when this one started this morning, but Dave had Bennett in his arms when he started seizing and had 911 on the phone within about 15 seconds. Dave's mom has been here helping me be on a modified bedrest (so I don't go into labor too early--35 weeks now!), so she came and got me and I made it downstairs in time to see his second cluster begin, and then a few minutes later, his third. We've never seen 3 back to back. And we've only ever seen him cluster twice before.

I was grateful we had 911 on their way, and they actually made it to our house in 8 minutes, even though I could've sworn it was at LEAST 15....because I felt much less anxious about the times he stopped breathing and turned blue knowing oxygen was on its way. I still don't understand why we aren't allowed to have an emergency med, oxygen, and a pulse-ox at home to be able to administer all of the things the EMT's do in this situation, but that's a different battle for a different day I guess. When they got there I asked them to immediately administer the emergency med they had (per our seizure protocol Dr. Morita has prescribed). They told me they had Versed, and I asked them to give it to him right away nasally. They were clearly taken aback and a little confused that I was so bossy (I can't think of a better word to describe it other than bossy, haha), but they hopped on monitoring his oxygen and getting the emergency med ready quickly, which we were grateful for.

As soon as they got the Versed in him (3 mg), he seemed to rouse from the seizure stupor, and then fall back to sleep. I think it stopped the seizure activity right away, but it's always hard to be totally sure. They kept him on oxygen basically from the time they walked in the door to the time they walked into the hospital out of the ambulance, so his oxygen level seemed to remain stable even after administration of the Versed, which was the big concern since it was our first time using it with Bennett (sometimes it's so strong that it shuts down kids' breathing). And it's really good to know now that at least today, nasal Versed was effective for stopping his seizing.

Dave rode with him in the ambulance and stayed with him at the hospital (no small feat post-seizure) as they ran bloodwork to check for therapeutic levels of Zonegran in his system, run a viral panel for his cold/flu (negative for flu, positive for rhinovirus--so...a common cold), get a CT scan to make sure his head was okay, and overall make sure he was stable. Everything looked clear (like it always does), so they were able to come back home within a few hours, thankfully. We just need to follow up with Morita tomorrow, obviously.

**********

So this seizure was brought on by a few factors, we think. 1) He's had a cold/sinus infection type of thing for the past few days. I'm pretty sure this lowered his seizure threshold because his immune system was not at its best. I've actually been worried the last 2 days that we might see a seizure knowing how sick he's been. Lots of SCN8A kids (and most epilepsy kids in general, I think?) lose seizure control when cold/flu season hits because it just takes such a toll on their bodies. 2) He tipped over on the hard floor and bonked his head just 15 seconds before the seizure onset, so we're pretty positive it was directly correlated to this (which we have seen with him before, but never been sure if it really was a trigger for him or not). 3) He's off the Phenobarbital, so there's no saying whether or not he would've had enough coverage this morning with it to avoid the seizure, but most of the SCN8A kids can't use monotherapy (one drug at a time) to maintain satisfactory seizure control. Almost all are on at least 2, if not more, drugs at once to gain even just semi-good control. We were hopeful that we may be able to keep him on just the Zonisamide for a little bit to see if maybe he would be okay on just one for now, but...it's looking like that's not the best plan anymore.

Our next steps are to talk with Dr. Morita tomorrow since today is Sunday and it's the weekend. I think we're ready to put him on the Trileptal (supposed to work great for most SCN8A kids with minimal side effects!), get to a therapeutic level, and if we have good control, titrate slowly down from the Zonisamide. It's a bummer to have to do this right now when we are literally one high blood pressure away from being induced with this little girl, but obviously we want to make sure he has better seizure coverage from here on out. The goal is always zero seizures, so we don't wait around for more to happen before we make changes--which is one of the things I love about Dr. Morita. She isn't casual about breakthrough seizures like so many other neuros seem to be. She wants him to be seizure-free as much as we do.

**********

Overall, Dave and I are feeling pretty bummed, but not surprised, that he had another seizure after doing so well for so long. Dave's mom asked me yesterday "How do you not just live in constant anxiety about when the next one is going to hit??", and I told her that it gets monumentally easier the longer he goes without them. I'd say a few weeks to a month is what it takes for Dave and I to stop freaking out about every little jerk, eye movement, bonk on the head, etc., but the moment the next seizure hits, we restart our clock. I think it actually helps that this time there seemed to be a clear trigger (the head bonk), as opposed to before when they were happening all the time spontaneously with no rhyme or reason. But now of course, I'm hypervigilant about him even tapping his head against anything, which is stressful, and possibly not even necessary, but it doesn't feel worth the risk with what's at stake for him. 

I wish we had maintained seizure-free status through the birth of this baby girl, because I would feel much less anxious being away from Bennett for a few days in the hospital knowing he had gone so long, but that's the thing about SCN8A--it doesn't seem to matter how long you go without a seizure. You can go years seizure-free (definitely the exception more than the rule, but it does happen!) and then randomly have another one out of the blue--no warning signs. This is one of the really difficult things about his diagnosis. We will never really get to a place of stability with him, which means that no matter how long we're seizure-free, we will never feel comfortable traveling anywhere we wouldn't have access to a hospital within minutes, we will never feel comfortable letting Bennett play football, soccer, any contact sports really, long drives with stretches of no hospitals within hours will always present extra stress for us, an we will never know if he'll maintain developmental progress or if he'll lose it all with his next seizure. It's a really ambiguous and out-of-control place to live, which is just super great for Dave and I's personalities....not, haha. It's teaching us to be flexible, roll with the punches, learn from Bennett's resilience, and adjust our expectations constantly for his life and ours. And it's also teaching us to rely on others a little more than we're used to, I think. Every time Bennett has a seizure, we have a huge support system that rallies to love and support us and him--either with words, meals, physical help, emotional support, prayers on our behalf, etc. It's really incredible to constantly be reminded how good people are and how much people believe in Bennett. He's definitely a fighter, even with so much working against him, and I love that so many people are rooting for him. It's been a little (and at times, not so little) silver lining in this very cloudy space we're living in right now, and we are continuously grateful. 

So here's to hoping we can get on Trileptal soon and start to see more control with minimal side effects. 3 months is a pretty impressive streak, but we're going to try to beat it this next time! 

11.26.17 Morita Appointment Post-SCN8A Diagnosis

This week has been a crazy week for managing health issues with Bennett and I. It started on Tuesday night (11/21) as I was trying to prep for our appointment with Dr. Morita the following morning at 8 am. When she gave us our results over the phone a few weeks ago it was clear that she had no idea what an SCN8A mutation meant, so I assumed I would need to bring in a few resources to help bring her up to speed on the current research and accepted treatment plans for these kids as we discussed Bennett's future care.

I didn't think it would take me hours to comb through all of the resources to try to find the most relevant info and print out over 50 pages I highlighted and underlined to bring to her...but it did. I think I stayed up until midnight or something obscene like that just putting together as much credible info as I could about medications with SCN8A kids, prognosis, development issues, labs we would need to run, other comorbidities to watch and be aware of, along with some of my own questions I had. In the end I had my 50 page stack from the SCN8A websites and a handout for me which served as an outline of all of my questions I wanted answered. I'll post it here just because as complex as my own personal health issues have been in the past--I have NEVER reached this level or preparation for an appointment, and I'm 1 part proud and 2 parts embarrassed that I'm THAT mom, haha:

Dr. Morita Appt. 11.22.17

-       Genetic Report Copies—Electronic and paper.

-       Resources about how to best manage SCN8A.

-       Medications:  

o   Therapeutic level for Zonegran (.5 mL more okay?). Calcium Channel blocker vs. Sodium Channel. Sodium seem more effective for SCN8A? Worth changing? Has it been studied in infants? Is it safe? Levels for acidosis I think?

o   Best way to get the Zonegran and covered by insurance?

o   How to best wean the Phenobarbital—SLOW. Do we need a compounded prescription maybe? 2.5-5 mg/2 weeks seems to be the average. Most on around 40-50 mg or higher.

o   Next step med: Trileptal, then Lamictal. Which will take longer to ramp to therapeutic levels? Pros and Cons?

o   Check levels regularly?

o   Emergency med: We need one. Before the Pheno wean. What should Bennett use? What does 911 administer? NOT KEPPRA. (For over Christmas if we have seizures) What’s our time limit? Last two seizures have been 10 min each.

-       Sleep:

o   Sleep study?

o   Possible apnea—very common in SCN8A kids. Startling awake, sometimes after not breathing. Still needing to be swaddled, etc.

-       Monitoring:

o   Pulse Ox script.

o   Heartrate monitor, etc. Insurance script for it SUDEP.

o   Oxygen at home

-       Cardiac Workup:

o    Echocardiogram, 24 hour EKG, halter monitor?

o   Establish a baseline

-       Emergency Room Protocol:

o   He turns blue…so:

o   Which meds are we looking for them to administer? What kind of dosing? Is oxygen appropriate at 911 level? Or wait until at hospital? Which meds to stay away from if we are on Zonegran and Trileptal? Or just Zonegran? What labs are we expecting them to run after a status episode?

o   How best to get ahold of you? Email? Phone? Not leave a message with the nurse…

-       Reflux:

o   Ranitidine—we are at max therapeutic levels and still having very acidic burps and poops and screaming at the bottle. It seems ineffective and I think he’s built a tolerance. Can we get a prescription for one of the other PPI’s? Will that interfere with epileptic drugs? I would like someone watching ALL his meds and levels.

o   Esomeprazole, found in Nexium®

o   Omeprazole, Prilosec®, Zegerid®

o   Lansoprazole, found in Prevacid® and generic forms

o   Pantoprazole, found in Protonix®

-       Immunizations:

o   May lower his seizure threshold, what do you recommend for spacing them out?

-       CBD:

o   Once we have our next seizure we technically qualify. Can we get that process started? People report great adjunct therapeutic effects of minimizing side effects from drugs.

-       Dr. Hammer:

o   Do you want his contact info? He is happy to consult with docs new to treating SCN8A. 

The appointment started with me showing Dr. Morita the papers I had brought and her response being, "Oh, he doesn't have that." I was caught off guard, to say the least. "What?" I asked. "Yeah, his is a mutation of unknown significance on that gene." At that point I just laughed and said, "Ohh, yeah no all of the mutations on the SCN8A gene are of unknown significance because most of them are brand new. But he does, in fact, have a mutation on this gene and there is good documented evidence at this point to show that these kids all have certain things in common as far as their prognosis goes." To her credit, at this point Dr. Morita was pretty open to hearing what I had to say and reading the papers I had brought to get a sense of what I was talking about. She told me she was out of her depth with this and that she'd be happy to refer me to an epileptologist at the U, which I declined because I told her we'd already tried working with them twice and had bad experiences both times. I also reassured her that literally no one is "in their depth" when working with SCN8A epilepsy because it's just so rare and hardly been studied. I just asked her if she'd be willing to work with us on finding a good treatment plan together that we all felt comfortable with, which she agreed to, so I told her we would like to continue working with her. 

She seemed okay with this, so we continued on to my questions for the appointment. Overall, the appointment was good, not great. I really wanted us to have a rescue med at home (something we give rectally or nasally to Bennett to stop the seizure immediately when it starts) because now we know that he has a much higher chance of going status on us the longer his seizures go on. But she refused to prescribe one because he only weighs 18 lbs, which is 4 lbs short of the 22 lb standard for having a rescue med at home. The risk I guess is that sometimes the rescue med (usually Diazepam) can actually cause the kids to stop breathing because they're so powerful, and since she also refuses to let us have an oxygen tank at home, we would have no way of reviving him. She is convinced that the best way to go is to just leave the rescue meds and oxygen to the EMT's and call 911 immediately now whenever a seizure starts. This is different than our plan before, which was to only call 911 after 5 minutes if he was still seizing. Luckily he has always stopped on his own--no rescue med needed. But we are about to start to wean him off of Phenobarbital which has given us the best control of all of his meds so far, and we hear it can be a pretty horrific weaning process with intense withdrawal and rebound seizures if you go too quickly. I would love the comfort of having a rescue med at home, rather than having to wait the 10 min for 911 to get there and just hope that the seizure hasn't gone too far that they can't stop it. On the other hand, I understand the risk of him stopping breathing on us (longer than he already does during his seizures...?) and I don't want to do anything we would regret either. 

She also denied my request for a prescription for a pulse oximeter to keep on Bennett during the night. I want it for peace of mind that he's breathing and his heart rate is normal throughout the night, as an alert if he were to start seizing at night in his room, and to be able to track what his oxygen levels and heart are doing during his seizures. Almost all of the SCN8A kids have some sort of monitoring like a pulse-ox because SUDEP (Sudden Death in Epilepsy) almost always happens at night with an unwitnessed seizure. I would never forgive myself if we didn't take every precaution knowing that Bennett has the highest-risk seizures for SUDEP (Generalized tonic-clonics), has the SCN8A gene which inherently carries a higher risk, and we were weaning a medicine we knew could cause withdrawal seizures and something happened to him. When I fought her on this (for a long time) she just dug her heels in that the pulse-oximeters lower everyone's quality of sleep, they false alarm, they're not always accurate, etc, etc. But I told her we needed one because we were 10 minutes away from a rescue med if he started seizing and the goal was to stop the seizure as quickly as possible. So she told me I should has his regular pediatrician and see if he'll prescribe one. 

She did give us a referral for cardiology at Utah Valley Hospital so we can get a baseline for Bennett and a basic work-up. This was something I wanted because the SCN8A mutation can manifest in cardiac tissue, and they think it may be a big part of what leads to SUDEP, actually, so I want to be sure we're monitoring that in him regularly. I was grateful for the referral, because that could have been a fight. We may still have to fight once we get in with a cardiologist to be sure they understand our reasoning and evidence to support why he needs it, but it was a step! 

She also told me that our regular pediatrician was who we should be talking to about getting a sleep study done to check for sleep apnea. I have no idea why she wouldn't just write that referral herself, but I didn't mind because I figured our pediatrician would probably be willing to work with us on that one. 

She was surprised and pushed back a little when I told her that the most effective drugs for these kids seem to be the sodium-channel blockers and Trileptal and Lamictal specifically were the best. She said something along the lines of "Other kids with these seizure syndromes tend to do worse on those...". Later I realized she was talking about the Dravet kids (SCN1A mutation), and she's right about that, but for our kids they seem to work. Once I showed her the data and the medication chart she agreed no problem that we should try Trileptal next once we finish the Phenobarbital wean. 

The last thing I was excited about was that we might be close to qualifying for the medical marijuana card here in Utah, which would allow us to legally start giving Bennet CBD oil. But when I brought it up (I'd even brought the application with me so we could fill it out there...) she made it very clear that we were NOT close to qualifying. She doesn't consider Bennett to be on high enough levels at this point of Phenobarbital to be considered "therapeutic", so his seizures he's had don't count as "refractory" (medication resistant). I argued that he was absolutely at a therapeutic dose and we'd had labs drawn previously that proved that. She sort of hesitantly acknowledged that she could look at those and see, but that he still would have to be on the highest dose possible of Zonegran and still have a seizure on it to qualify. Yet in the same breath she told me, "You are more than welcome to just order it online and start it on your own though--plenty of families do that." I just sort of exasperatedly said "But it's illegal! Why won't you help us by signing that he has intractable epilepsy (which you agree that he does) if you recommend it?!" She didn't really give a straight answer, which was frustrating to me. I don't actually want to try the CBD for seizure control--his control is actually pretty good right now, but it is supposed to really help the kids with their development and counteract the negative side effects of the AED's. 

So I left the appointment with Dr. Morita frustrated that she wouldn't play ball with me on all accounts, but grateful she was willing to read the research and listen to what I had already learned about SCN8A. And I set up an appt. for later that day with our pediatrician to talk about the rest. Luckily they were great and squeezed us in even though it was the day before Thanksgiving and they were slammed!  

11.10.2017 SCN8A Mutation..."Diagnosis"?

It's been almost 48 hours since we got the call from Dr. Morita that she had Bennett's genetic testing results. He doesn't have the SCN1A mutation which is the gene associated with Dravet Syndrome. That's the syndrome I was most worried about and what pushed me to ask for testing in the first place. But he does have another mutation on his SCN8A gene. I knew a couple of families in the Dravet support group on Facebook who had a mutation on this gene, but I knew essentially nothing about it. At first I was relieved to hear his SCN1A gene was normal. But after two days of researching and connecting with other families of SCN8A mutants (is that terrible? haha), I almost wish he had Dravet instead of SCN8A. Dravet Syndrome has thousands of cases reported in the literature and a good amount of research being done about it. SCN8A has a total of 150 cases ever reported...ever...in the entire world. To give you a sense of how rare this "diagnosis" is, I'll show you what came up when I googled his specific mutation 5 minutes after getting the call:

That was pretty terrifying. Most parents get the same result when they look up their kids' SCN8A mutation too. There's just so little known and reported about it. I also tried searching Facebook for SCN8A parent support groups and found nothing--absolutely nothing. Luckily I was able to connect with a couple of the parents on the Dravet page who's children had SCN8A mutations and they told me that their support group was secret on Facebook so you had to be invited. They also pointed me to another couple of resources out there that have been developed in the last few years. The LAST FEW YEARS. That's how recent this research is on this mutation--like literally, Corinne (my sister who does genetics) looked up his mutation and it's not in any databases. It's never been reported as far as we can tell. Others on the SCN8A gene have been, but just not his exact missense substitution. Guess you can't say Bennett's not unique, right? One of a kind...

**************

So what does this mean? Well, we're lucky in a sense because we actually found what we assume is the cause for his seizures. Most causes for epilepsy are never figured out, so families just say "epilepsy with no discernable cause". So we actually have a root cause we can point to (most likely), which is rare, but unfortunately you almost don't want to be able to point to a "cause" because the prognosis for any of these recognized epilepsy syndromes is usually pretty bleak--that's why they get studied in the first place. And SCN8A is no exception, unfortunately.

There's a few websites out there that seem to hold all the information for families which I'll put here for anyone who's curious--and so I have a convenient place to keep a list of them.

The Cute Syndrome Foundation-The SCN8A mutation has been deemed "The Cute Syndrome" because all of the kids affected are just so cute, haha. So I guess that's what we'll start calling Bennett's epilepsy. That seems to fit him, right? ;) 

University of Arizona SCN8A Research-The main geneticist gathering and analyzing data is Dr. Hammer who is at the U of A. His own daughter had an SCN8A mutation (he was the first one to ever find it) and passed away from it a few years ago. He has committed to furthering the research and resources spent on finding good treatment options for other kids suffering from Cute Syndrome. It's actually pretty incredible what he's accomplished in a few short years. He has a registry of every documented case (that he can find or who finds him) and I think it's up to around 100 now! He collaborates with parents to collect the information we want to know--things like which meds make things worse for our kids, which seem to be the most effective, other comorbid disabilities or diagnoses, seizure types, mortality rates, developmental delays and milestones hit and missed, etc. He's also part of the parent support group on Facebook so he can answer questions directly for us.

Wishes for Elliot-There are a handful of websites, Facebook pages, and blogs out there following individual kids' experiences with Cute Syndrome. This was maybe not a great place for me to start looking for details because a lot of these kids are on the severe end of the spectrum and are completely dependent on others for feeding, walking, communicating, etc. along with continuing to have dangerous long seizures that land them in the hospital regularly. But I was so grateful to just find ANYONE who had ANY information about SCN8A that I couldn't stop reading their stories. These kids and families are true fighters, and it's pretty inspiring to read about their roller coaster ride that is Cute Syndrome and continue to feel their hope and strength through it all--even though it's painful to acknowledge that there's a possibility we could be embarking on the same journey.

*************

The first night after getting his "diagnosis" (I put quotes here because it's really not as straightforward as a diagnosis--there's a range of presentations in kids who have SCN8A mutations with lots of differences and a few similarities between cases) was the hardest for Dave and I. At this point we only had the info we'd found online to go off of and it was pretty devastating. The general sense I had so far was that everyone who had an SCN8A mutation was pathological in some way--regardless of the specific mutation, 80% of kids were entirely nonverbal, all of them had an intellectual disability of some sort, a majority had physical disabilities as well, and the risk of Sudden Death in Epilepsy (SUDEP) was higher in Cute Syndrome kids than other epilepsies, which meant that just this year, 9 kids passed away, and it seemed rare to live much past the teen years. Cute Syndrome kids' seizures tend to be what they call "status epilepticus" which means they are long enough that you have to go to the ER and administer meds to get them to stop--some lasting multiple hours on end or longer. Apparently a lot of the cases of Cute Syndrome have also reported heart arrhythmias associated with status seizures, which is the leading theory on why the SUDEP rate is higher than normal for our kids than other epilepsies. So that was all equally as terrifying, if not more so, as my google search coming up empty.  

I kept scouring the research for exceptions and cases where someone with the mutation actually developed typically or found seizure control or any positive outcome, but came up with nothing. Dave and I just held each other and cried after Bennett was asleep that night. We cried at the realization that he was never going to "grow out of" his seizures. We cried at the possibility of status seizures sending him to the hospital fighting for his life. We cried imagining losing his smile or his laugh again. We cried thinking about all the things he might never be able to do. We cried because there are no answers. We cried because we're terrified to be responsible for this little baby of ours when we have no idea how to help him. We cried at the thought of his next regression. I cried at the thought that he may never say "mama". We cried at the thought of losing him. We cried for his sister and all this might mean for her too. We cried that he'd been on a medicine for months that turned out to be known to make things drastically worse for kids with SCN8A mutations. We cried thinking about how to capture every second of every day while we still have him with us fully right now. And how terrifying the thought is that we may need these pictures and videos in the future just to see his smile or hear his laugh again. We just cried. We cried a lot. Well, I cried a lot, Dave cried a little. And we committed to enjoy every moment with him and celebrate the progress and not live life waiting for the other shoe to drop. But this feels so vulnerable to me. I feel like the harder I love him, the harder I'll fall if we ever do lose him. But I logically know I'll obviously regret it if I put up a wall right now. So for now, we'll make the choice to be excited about little victories and love Bennett every moment of every day--regardless of the impact this syndrome may be having on him. 

**********

Thankfully, the next day I was added to the parent support group on Facebook and after introducing ourselves and Bennett to the group a few other parents reached out to me because their kids' experience was similar to how Bennett's was in the beginning. There were a couple of those kids who were actually independently functioning, with only mild emotional disabilities, or just behind a couple years in school. But they could walk and talk and read and write and everything. One of them had gone 4 years seizure-free! 

As I searched through the past posts on the page I discovered that there are actually 4 families here in Utah with kids with Cute Syndrome! That was such a comfort to me, for some reason. Just to not feel so alone I think. And the more I read, the more I came across stories of kids who were on the mild end of the spectrum or got seizure control really early on who rarely have status seizures, or have recovered from regressions, continued to develop, enroll in public school (always with some assistance), and have friends and a close-to-typical life. This has been so hopeful for us. We're one of the few who got a diagnosis so early on in the progression of the epilepsy. We are now able to tailor Bennett's medications and treatment plans to the known aspects of Cute Syndrome. For example, we found out that Keppra makes almost every single kid worse if they have an SCN8A mutation. So we were right. Keppra was the cause of a lot of his issues these last few months. It makes me sick to think of how long he was on it, but it is honestly SO rare to have this reaction to it and none of our neurologists seem to have even heard of SCN8A so I don't know how they would have ever known. 

It seems like the kids who had relatively stable control of the seizures early on tend to develop pretty well and not suffer as extremely as the kids who still have seizures daily. I'm hopeful that since we've found some control early on already maybe it's a good sign that Bennett's seizures will be manageable. I am worried because they've definitely gotten longer than they used to be. That last two were about 10 minutes and he didn't come back to us for probably another 30. They used to be 5 minutes and he would come back right away before passing out to sleep. We can't just say his seizures are benign anymore, because Cute Syndrome kids are known to have status seizures that cause severe regressions or brain damage if left uncontrolled. So the priority moves from eliminating as many side effects as possible, to eliminating as many seizures as possible. This is good to know, because it means we will be more cautious when switching meds and we have more information when we have to make decisions about quality of life vs. seizure control for him. 

It feels strange knowing that our lives will never be the same, yet the world goes on as if nothing has changed. Dave was trying on ski boots the day we got the diagnosis and the employee said something to Bennett like, "Are you gonna be a little skiier someday?". And we both just sort of half-smiled and quietly said, "Yeah...maybe...", knowing that there's a chance he may never be able to ski. It's difficult to grapple with the reality of the extremely negative possibilities and the hope that maybe he'll be one of the lucky ones who continues to learn and develop on track as long as his seizures are controlled. They say the only thing predictable about epilepsy is that it's unpredictable--and Cute Syndrome seems to take that to the extreme with the ups and downs and the progress and regressions the kids go through with each batch of seizures or new meds. So all we can do is live in the moment, pay attention to how he's developing and make adjustments along the way as needed, and pray that somehow Heavenly Father carries us all through this as we adjust to our new normal.