Here We Go Again...

This past Monday we had an appointment with a neurologist I waited 4 months to see. She is a doctor I saw speak at an Epilepsy conference last October, and who really seemed to get all the "side effects" of Epilepsy (behaviorally) that our current neurologist doesn't seem to know much about. Plus, she is head of her department, as opposed to the medical resident we've been assigned at our current practice, who is a wonderful person, just, you know, a medical resident. I wanted a second opinion with this woman. To know we are doing, and have done, everything we can in regards to B's seizures. I wanted to sit down and talk with someone experienced. I remember being at the conference, and a family spoke about how they had gone to several different neurologists when their son was first diagnosed. Over and over they were told they already had the best, and to stop looking. I wanted to see "the best", too.

In the end, though, I'm not sure it was worth the wait. She was different than I expected. Not as animated and social as she was at the conference. She told me B will probably outgrow his seizures, and acted as though we were wasting her time. Don't get me wrong, she was good with B, but I could tell that she didn't consider us one of the serious cases she is probably used to handling (which is probably why she spent the majority of the appointment talking to B about Minecraft and his other interests, instead of asking me about his seizures.) She said she'd follow us "if we wanted", with a shrug of the shoulders. To me, B's Epilepsy is serious, but I suppose because there is a chance he could one day be seizure free, we just weren't interesting enough.

She also brushed off my behavior concerns, and of course had to give her opinion on his Aspergers diagnosis. That even though we had a 6 hour neuropsych exam done through the autism center that is part of her hospital, she just thinks he's highly intelligent and "a boy". Even though she admitted that the neuropsych was very thorough, and even though I told her it was the school BCBA who really thought he had Aspergers and told us to get an evaluation, she wasn't convinced. She told me she'd have the psychologist who works with her take a look at his testing, see if she agreed or disagreed with the diagnosis.

It pissed me off.

We weren't there to discuss anything other than B's seizures. I certainly wasn't there for a 2nd opinion on his Aspergers diagnosis, especially when she isn't a neurologist who specializes in anything other than Epilepsy. I'm tired of every doctor and nurse we come across thinking I *want* their opinion on any diagnosis my kids carry. There's nothing I want less. 

At first, I tried convincing myself the appointment had gone really well, but once I was able to process everything, I realized just how much she brushed me off, and it really bothered me. Not because she wouldn't do anything differently, but because she seemed uninterested. Instead of taking time to discuss my concerns about the seizures, she spent most of the time challenging his diagnosis on the spectrum, or talking about topics unrelated to why we were there.

I really hoped I'd be seeing that passionate, caring, knowledgeable person I saw speak. I should have known better. Doctors who are department heads don't want cases like B's. Regardless of how scary his brand of Epilepsy is to me, cases like his don't peak the interest of a seasoned neurologist. B isn't a waste of time, though. He's a kid who had 6 tonic/clonic seizures over the course of 3 weeks, and whom I worry about every day. I want a doctor who gets that. And you know what? Our inexperienced medical resident does. She is always there to email, or call, and never makes me feel like I'm wasting her time, or that B's Epilepsy is no big deal.

She also doesn't question his Aspergers diagnosis, because, you know, she's met him, and knows it's not just "intelligence and boy". She also knows we see her for seizures, not autism.

I guess I've learned a valuable lesson: bedside manner, personality, those things can sometimes be way more important than how much experience a doctor has. It's important to see someone who isn't jaded, or just looking for the most severe case. Who thinks B is just as important as I do. Even if he one day does outgrow his seizures, it doesn't mean I don't worry now, especially since his type of seizures are the ones most associated with SUDEP. Excuse me if I don't brush his Epilepsy off, and skip along home.

So, we're sticking with our current neurologist. She's not "just" a medical resident, she's someone who cares about my kid, and knows he's worth her time.

Sad Face

July 31st and Aug 19th are two dates that are burned into my memory forever. They are the the dates of B's first seizure, and of his last. Well, his last so far, as much as I hate to qualify it like that. The last one before he was admitted and given giant doses of Depakote, after experiencing 3 Grand Mal seizures over the course of 5 hours. 

July 31st is also the last morning he woke up in his own room. Excessive Googling, and finding out there is something called SUDEP, which is basically SIDS for people with Epilepsy, brought him into our bed, and won't allow him to leave. 

I won't allow him to leave. 

Last night, as my husband, B, and I were vying for room in our bed (alongside our 65 lb dog), B started crying and told us he just wanted to sleep in his own room. He said it a few times, frustrated and teary-eyed, and only one word escaped my mouth. 

No. 

When my kids sleep in our bed, I wake up at the slightest movement. It's a good thing when you want to know if your kid starts seizing beside you, and a bad thing if you ever want to feel well rested. I just can't bring myself to let B sleep in his own room again, alone, because what if...

What if? 

There are (expensive) seizure monitors on the market, and I honestly thought we'd have one by now. Mostly because my husband isn't a fan of sharing bed space with a child who rarely stops moving all night. But, it's a lot of money, and easier to just keep B in our bed. Even with a monitor, I don't trust anything as much as I trust myself. I wouldn't feel comfortable without B beside me at night. I like having him close, within my reach.  

But, he's 7, and the novelty of sleeping in our bed has worn off for him. It's been a long time since he's spent a night in his own room, and he's always been a kid who preferred his own bed over sharing one with us. Even as an infant, when I wanted to co-sleep, he preferred his crib. We actually moved his crib into our room so he would still be with us, even though he didn't share our bed (yes, we were those crazy AP parents.) 

But moving his bed into our room now just isn't an option, and, yes, would be over the top. I just don't know how to let go, or ever feel comfortable letting him sleep alone. Even if we did have a $600 seizure monitor hooked up to his bed, it's not the same as having him with me. I know he can't sleep with us forever, but, well, I want him to sleep with us forever. 

I am not sure what to do. I hate that B is so upset over having to stay in our room. I know how much he loves his own bedroom, and I know he doesn't understand why I'm scared to let him sleep alone (nor do I want to share my reasons, because he doesn't need to worry about such things.) 

I know B hasn't had a visible seizure since August 19th, but that means nothing to a worried mother. Nothing. It also doesn't mean he won't ever have one again, especially if he has a growth spurt, or gets sick, or anything else happens that makes his medication a bit less effective. It also doesn't mean he can't have a random breakthrough event. Epilepsy is a mystery. We have no idea why B started having seizures, and not having a cause just makes it a lot scarier. For me, at least. 

Seeing your child have a Grand Mal seizure is not something I would wish on my worst enemy. Those scenes are with me forever, as is the feeling I had the first time, when I honestly thought B was dying. It's nothing like you see on TV. It's 1000 times worse. It's not comforting when the doctors tell you they can't pinpoint where the seizures are starting, and that they seem to be coming from everywhere. It's not comforting to know your child's medication might soon be changing, because of how it's affecting his organs. I can barely send B to school without a panic attack, so imagine how difficult it is for me to even think about letting him sleep alone. 

I know B deserves a normal life. I know he should be able to sleep in his own bed. I don't want him to be sad, or feel different, and I wish my anxieties didn't get the best of me. It's just a scary thing, letting go. I need to find a way to do it so that we are both happy, or else I'll just end up sleeping in his tiny, Ikea bed with him, and that's not ideal, either. 

So, About Epilepsy Awareness Month...

Cure for Epilepsy? Yes, please! 

November is Epilepsy Awareness month. As you know, we were thrust into this club over the summer. Without warning. With no history of seizures. No illness, no trigger, nothing. Although I am well aware that a lot of kids on the spectrum experience seizures, it was something I never thought we'd face. My kids are older, healthy, and I was under the assumption something like Epilepsy would reveal itself earlier in life.

Well, 5 Grand Mal seizures over the course of 3 weeks changed all that. One hospitalization, and one prescription for Depakote later, November suddenly means something different. Sure, I've known people whose children have seizures, but without first hand experience, I didn't get it. How scary it is to watch your child seize. To watch them take four.long.hours to get back to "normal" (Ben does not have a short recovery time, and seeing your child lose the physical ability to speak, while looking at you with sheer terror in his eyes, it's not something I'd wish on anyone.) Seeing your child change after seizure #1, his behavior, just something about him, it's devastating.

B is still B, but he's a little different now. Epilepsy brought with it severe hyperactivity (I describe Ben as my little pinball.) It brought with it bouts of him looking really sick and really pale, for no apparent reason (this started after the seizures, and we have no idea what's causing it, yet.) It brought with it sleepless nights (for me), and took from B things which he loves (gymnastics, swimming without a bubble, using the playground equipment at school.) It's led me to scary Google searches, and worrying what this will mean for B down the road, if he isn't one of the lucky people who "outgrows" it.

Epilepsy brought with it doctors who are so used to seizures, they fail to understand parents like me are not. Who hand you a prescription for medication that could pretty much kill your child's organs, and think you shouldn't be concerned, ask any questions, or request further testing.

Epilepsy brought with it no explanation to why this was happening to my boy. Doctors can't even guess. No one knows what causes it, unless there is a specific genetic condition found. My child's brain went haywire, and no one can tell me why. What it means. What to expect. Nothing.

The truth is, all I knew about Epilepsy came from TV, or maybe from a friend here or there. People flailing around like a fish out of water (not at all how an actual seizure looks.) An infant getting a high fever, and having a seizure. A child staring off into space, or someone finding seizure activity during a sleep study. If anything, I thought those were the type of seizures we'd experience (not that those aren't scary or serious, too.) They just seem more common, especially with kids on the spectrum. I was in no way prepared for the kind of seizures B experienced, and didn't even recognize what it was the first time. I had no idea how scary it would be to receive an Epilepsy diagnosis. Everything that could come along with it. That sometimes even unexplained death occurs.

Death. 

I've been through a lot with autism, but I have to admit Epilepsy scares me much more. I don't care if my kids live with me forever, I just want them to live. I want them to be healthy. Something potentially taking that away...I can't explain how it makes me feel. I really can't. It's what keeps me up at night.

So, while I think it's time to move on from autism awareness (I have very different thoughts about each condition), I think it's time for people to actually become aware of Epilepsy. I know I had no idea what it really was, or what to do if I ever saw someone having a seizure (if I even recognized what it was), before B was diagnosed. I even had someone refer to B's seizures as "fits", so clearly educating the public as to what Epilepsy is, and what is isn't (he's not crazy!), is important.

For more information on Epilepsy (because you should 100% educate yourselves), check out these websites:

Epilepsy.Com

Epilepsy Foundation

Danny Did

Talk About It

Selfish

I have a confession. Lately, I've been feeling very selfish. Or maybe self-centered? All I know is that my #1 priority is my kids, and with a lot going on these days, I haven't been the best friend. Wife. Anything other than mother (and even that...)

More medical issues have come up with B, and in plain English, it sucks. Hard. In two weeks he will have an endoscopy to figure out if he has Celiac Disease. I won't go into detail about how we arrived here, because B deserves some level of privacy, but I can say he has markers in his blood showing he has a pretty high risk of developing Celiac at some point. That, along with other symptoms, have led his GI to tell me that even if the biopsy doesn't show Celiac, she will probably still want him to go gluten free.

Sigh.

B is already small. He barely eats, and what he does eat of course contains gluten. He doesn't have a big appetite, and so I fear taking away foods will leave us with other problems. Like starvation. I know I am over-reacting in a big way, because he probably won't starve to death, but when I say my kid is fine not eating, I mean it. I pretty much have to force feed him as it is, and that's with foods I know he likes. I've tried GF foods, and I can say with 100% certainty, if B has to go GF, we are screwed.

A lot of his issues with food are sensory based. His rigidness also makes it so that only certain brands and colors of food are acceptable. He eats no vegetables, and fruit is hit or miss, though thank goodness for year round watermelon. I don't even give a care if it's GMO. Anything to get him to eat.

I feel like we just went through a big change with the Epilepsy diagnosis, and we all just need a break. Smooth sailing for a while. But, I guess that isn't in the cards.

On the K front, things are going pretty well, but we are currently doing a med cleanse, and things could change. Basically, nothing is working for her anxiety anymore, and the meds are making her incredibly tired, along with making her gain a ton of weight. Just too much build up, I guess. So we are weaning her off, and getting a baseline. Her doctor is hopeful once we do this, her system will rev up a bit. She won't be exhausted all the time, and her weight will come under control.

K hasn't been off meds since kindergarten. Her anxiety is so bad, the side effects were "worth" it. Until now. I hope the transition goes smoothly, and I am hopeful her better school placement will help, but we don't really know what it will be like with K totally med free. All of this is adding to my own anxiety, and my own inability to look past my own kids to anything else.

On top of that, I am always worried that our perfect placement for K will be pulled out from under us. This is just a constant in my mind, and lately I've been worrying about it more. K is at a school where she is accepted and loved, and where she feels accepted and loved. She isn't forced to change who she is, or made to feel that everything she does is wrong. The focus is on her strengths, and what an awesome kid she is, not what an awesome kid should could become if she just did this, this, or this. I am always concerned that one misstep on my part with our school district (whatever that might be) could equal her placement being in jeopardy. The stuff nightmares are made of, my friends.

So, yeah, there's a lot going on, which means I haven't been pulling my weight as part of  my "village". At least I worry I'm not. I know there are people who expect certain things from me, but right now I can't get out of my own head. I want to, but I also believe you have to take care of your own family first and foremost, and sometimes you need to take a step back and do just that.

I am hopeful that things will settle down...soon-ish? That I can feel more comfortable about school issues, figure out all of B's medical stuff, and find a new rhythm. Not feel like I need to circle the wagons, and be unapologetically selfish. Although I guess I'm not unapologetically selfish, as I feel bad I can't be there for people as much as I'd like.

It's probably just part of being a parent. Not even a special needs parent, just a parent in general. Sometimes you have to take a timeout and focus on your own family, and their needs. And hope people understand.

Choosing to Medicate. Also? Words Hurt.

For as long as I can remember, the biggest challenge B has faced is his impulse control. Or, lack thereof. He'll just walk by someone or something, and need to hit or touch. He still runs out of buildings without me, and across busy streets and parking lots. The other day we momentarily lost him at an amusement park because he decided he wanted to go on a specific ride, and just took off running into the crowd. I have a scorch mark on my counter from when he wanted to see if a bottle cleaning brush would melt over a candle flame (while I was in the bathroom for 2 minutes, and he was four.)

In our meetings with neurologists and developmental peds, there has always been talk about medication, but until now it was never something I wanted to pursue. He wasn't really being affected by his own issues (feeling badly about himself, or doing poorly in school), so we went the therapy route, instead. We talked about strategies, and implemented tons of sensory input, in case that was the root of the problem. We figured as he got older, he would naturally mature out of some behaviors. Also, because B is a small kid, having him take medication known for zapping people's appetites wasn't something we wanted to do. The child barely eats as it is. 

But, since his seizures began, things have gotten a lot worse. He's like a pinball. That's the best way I can describe the change in behavior. He is unable to regulate at all, and has started getting in trouble at school. A couple days ago we were at McDonald's, and B walked by a little kid and bopped a toy out of his hand. He didn't even seem to notice he did it, and immediately gave the toy back. That wasn't good enough for the child's mother, though, who laid into B, telling him he was a bully, and why would he be so mean to her son? 

B just stood there, like a deer in headlights. I could see the tears welling up in his eyes, and the red shade of embarrassment creeping over his face. It was all I could do not to start screaming back at this woman, but I knew it would get me nowhere (sometimes you can just tell when it's not worth it to even attempt a conversation), so we gathered our things and left. 

The look on B's face when this happened made me realize we need to try something else. I refuse to allow his self-esteem to take a blow, because the electrical activity in his brain is making him more impulsive. I refuse to allow his school experience to go downhill. I refuse to allow people to judge him as a bully, or bad kid. I never again want to see that look of sadness and shame on my child's face.

The fact is, we aren't new to medications. K has been on a few, trying to mitigate her constant anxiety, so it isn't like we are against them. We have always tried other things before turning to meds, but some things just can't be helped any other way. B has ADHD tendencies, anyway, and the onset of his seizures really made them worse. We were hoping once his seizure med built up in his system, some of the side effects of his seizures would ease up, but that hasn't happened. I've also learned recently that a lot of kids with Epilepsy display the same type of behaviors as B, and medication can really help. 

So today we are meeting with the developmental ped, and asking for a prescription. I once had a doctor tell me that you should never medicate your child unless their issues are affecting them. Not if they are affecting you as a parent. Not if they are affecting a teacher. Only if they are affecting the child, which up until this point they weren't. I have really lived by those words, and feel we've gotten to the point where B is being affected, and where he's starting to feel bad about himself. 

So here we are. 

Sure, there's a part of me that wishes we could find a different way to help B, but we've tried everything else. And if this truly is being made worse by the seizure activity in his brain, then all the OT in the world won't make a difference. B doesn't deserve to be screamed at, and called a bully. He doesn't deserve to get in trouble at school because he can't control his body. He doesn't deserve for his seizures to make things worse. He deserves to be seen as the awesome kid he is, and hopefully with a little help, that will happen. 

That's a great kid, right there. 

Epilepsy Sucks

We haven't been members of *this* club for very long, but I can already say I hate being here. Watching your child have one Grand Mal seizure (never mind 3 in a row), might be more PTSD-inducing than the worst IEP meeting. Worrying about your child's health elevates scary to a whole new level. Especially when you make the mistake I did, and Google. Or when you read what should be a bittersweet "pay it forward" story on Facebook, that ends up being just a "bitter" story to you, because it involves seizures... and death.

The truth is, I have no idea what is going on in B's brain. Neither do the doctors. His MRI was fine, which I am eternally grateful for, but it leaves us all guessing. What caused this sudden onset? What caused so many within just a few weeks? What does it mean? How will they affect him? Is this forever?

To add a whole new layer of worry, I definitely think B is having some activity that isn't being mitigated by his medication. He still sleeps with us, and I couldn't fall asleep last night because his body wouldn't be still. Everyone moves at night, but his body was twitchy, and rigid, and flailing about. It was almost like watching bits and pieces of one of his bigger seizures, if that makes any sense. It didn't look comfortable. Though he was asleep, I could tell his little body wasn't getting much rest.

Thankfully, I did think to video it. I sent 3 videos off to his neurologist this morning, asking (begging?) for answers. B has been more hyper lately, and his tolerance for anything has gone down the toilet, which I think is because he's just tired. Both my kids tend to get hyper/silly/crazy when tired, and B has definitely peaked. It has been worse since the seizures began, and isn't getting better. I am hoping there is something we can do so the seizure activity is less at night (if that's what it is), and he can get more rest. I think that would probably help with the rise in behavioral issues, too.

I do want to end this blog on more positive note, though, so here's a little victory from last night. B has severe sensory issues. So much so, that his diet is extremely restricted. I'm talking cheese sandwiches, some types of pizza, some snacks, and a few fruits. Oh, and plain cheeseburgers from McDonalds, which he would live on if I let him. Even some things I know he likes can be hit or miss, depending on the day. Food is a constant struggle, but I never stop offering different things. Last night I made pasta, which is something he never eats. I pretty much begged him to just try one noodle, and he agreed, which was a miracle itself. I added a tiny bit of teriyaki sauce to make them like the "Chinese food noodles" he claims to like, yet never actually eats.

It took a while, but he finally chose one noodle, and ate the whole thing. Without screaming about how gross it was. Without crying, and telling me he was "just kidding", and really didn't want to eat it. Sure, it took some time for him to build up enough courage to eat it (he even told me he was really scared), but he did! It was just the one noodle, but it was a HUGE step for B. I mean, huge. We are working with his OT on eating issues, but it's something like a 7 step process, from just tolerating food on the table, to plate, to smelling or touching it, etc, etc, until finally trying it, and sometimes I get a little antsy. I was so proud of B last night. I'm going to ride that noodle victory for a while.

Might not seem like much, but this is a BIG deal! 

In Knots

It's barely 7am and I've already downed Excedrin and Zantac.

It's been a week.

Monday, B had a repeat EEG. Sleep deprived. Because we switched neurology practices, they wanted to do their own testing. I wasn't really excited about the prospect of another late night/early morning, but at least the new practice allowed 5-6 hours of sleep, as opposed to four.

I let B sleep until a little after 5am, after going to bed around midnight. We had already planned ahead of time that he would take a bath when he got up, because he said that helped the last time. He wasn't interested in eating breakfast, so I packed snacks, and we left the house at 6:30.

The hardest part of a sleep deprived EEG is trying to keep your child awake on the way to the hospital, especially when you live an hour away from said hospital, and that is with no traffic. Even leaving our house at 6:30am guarantees at least 30 mins will be added to the commute.

On the way to the first EEG, B stayed awake on his own for about half the ride. On Monday, I had to start yelling, and singing badly, and tickling his leg, before we even left town. He is not a fan of being kept awake, so the yelling went both ways.

Then, about 30 mins into our ride, he became silent. I looked in my rear view mirror, and (insert expletive here), he was having a seizure.

Of course we were on the highway, with no good place to pull over, so I booked it to the next exit. I tried timing the seizure, but my iPhone is nearing the 2 year mark, so it has begun to fail me. The second I hit the clock app, it froze. I contemplated throwing it out the window, but held back. I closed the app, and opened the camera, hoping to video some of the seizure, since timing it wasn't going to work. Thankfully, the camera worked, and I was able to get a bit of the seizure on video before pulling off the highway (I basically just held my phone in his general direction, hoping I actually recorded something useful, since, you know, I had to face forward to actually drive).

After I pulled over, I basically just made sure B was OK. I stroked his head as he seized, whispered comforting words, and waited for it to be over. Please, please, don't let this one be the one that goes beyond 5 minutes. Taking him out of the car and giving him diastat in a random parking lot was not ideal.

Thankfully, he stopped seizing after a few minutes, and immediately fell asleep. I got back in the car and started driving, paging the on call neurologist as I drove. She called back after what seemed like an eternity, and I asked her what I should do. Go to the clinic for the EEG? Go to the ER? B was OK. Sleeping, but OK. She told me to just go get the EEG done. They'd assess him there, and send us to the ER if they thought he needed to be checked.

It felt like forever before we reached the hospital. All the while I was cursing the fact we live in the boonies, too far from civilization, and the fact that not enough people use public transportation to get into the city, clogging up the roads when I'm in a hurry! You know, the rational way you think when under a great deal of stress.

When we pulled into the parking garage, B woke up, and seemed OK. He walked himself into the hospital, and was tired, but acting more like himself. We were told the on call doctor was on her way in (she apparently wasn't actually at the hospital when we paged her), and we started the EEG. It was a breeze. B was so tired, he easily fell asleep, and I sat in chair next to him, trying my hardest to stay awake.

The EEG tech didn't make him blow on a pinwheel like last time, and said she wouldn't bother him with the strobe lights, either. He was exhausted, already had one seizure that morning, and we just wanted to talk to the doctor and go. She took all the leads off, and we were both trying to wake him up enough to go when it happened again.

She and I both noticed at the same time. B's head had turned to the side, and something wasn't right. Just as I looked up to tell her he was seizing again, she was already out the door to find the doctor. I guess we lucked out in a way. The neurologist was there to witness the whole thing. Sure, I had my video from that morning, but it wasn't long at all, and it's always good for them to witness an event themselves.

After the seizure was over, we moved B into a different room to sleep. The doctor went to speak to her attending, because she felt B needed to be admitted. She wanted to give him a big dose of seizure meds, to really raise the level in his system, and make sure he was OK. Of course, we had to wait hours for a bed to be ready, but at least we were in the hospital, just in case.

I called my husband, and asked him to come from work so that I could quickly (as quickly as possible) drive home and get things for us to stay overnight. He offered do it for me, but, well, he's a guy, and I didn't trust him to pack anything we'd actually need. I was also hanging by a thread, and needed control over something. 

Because B hadn't eaten that morning, they wanted to take advantage of his empty stomach and do a sedated MRI. Of course, that wouldn't happen until 6pm, so I felt comfortable running home. I'd be back in time for anything important. My husband showed up to relieve me (I think around lunch, and I only say that because our EEG tech was eating when I left. I really have no idea what time it was), and cursed all the way home, again, that we lived so far away (but at least no traffic this time).

About halfway home I received a text from my husband. B had another seizure on the way to his room.

I was still 30-40 mins from home, and just wanted to turn around and rush back. It took all my strength to keep it together, and not go 100 mph down the highway. Somehow, though, the closer I got to home, the more calm I began to feel. Yes, B had three seizures in one morning, but he was where he needed to be. I didn't need to kill myself getting back to him. I had to relax, gather our things, and keep my wits about me. There was nothing I could do about the fact we live an hour away from the hospital, but I'd be back there soon enough, and B was in good hands.

Of course, really, I was probably just in a state of shock. I had reached the period where you kinda go numb. Where your brain just turns off so you can muddle through. Whatever it was, it was better than the raging anxiety I had been feeling.

I got back to the hospital just in time to meet with every single medical student in the building. It wasn't awkward at all walking into B's room, and seeing him surrounded by a bunch of people, who all turned to stare at the same time (as I haphazardly carried every belonging we own into the room. I might have over packed). I think my husband was relieved to be let off the hook. Let's face it, he's a good dad, but I'm the one with all the answers.

B pretty much slept the day away, waking up a few times to throw up (no one knew why, and it started before they gave him the IV meds, so it's a mystery. Maybe just the stress of having 3 seizures in the matter of a few hours, and no food).

Child life came in, and brought him tons of dinosaur toys, which he loved when he finally woke up a bit. Especially this one remote control dinosaur (that is no longer manufactured, and which Amazon Marketplace wants $600 for. I am hoping I can score it on Ebay at some point, because, seriously, he loved this thing).

Ben finally started to wake up, and get back to his usual hyper self, right before his MRI, where they doped him up again. The MRI took about an hour, so I used the time to finally eat (I had been up since 4am, and had yet to even get a drink of water), and tried to relax. Once it was over, we sat in recovery for a couple hours (watching a doped up kid try to eat a Popsicle...best thing ever. Brought some much needed comic relief to the day), then headed back to the room.

By that time B was starving, but of course it was around 8:30pm, and the kitchen was closed. I went to the 24hr cafe, where I attempted to get him a grilled cheese, but even though they had bread and cheese, the guy refused to finagle me a sandwich. So, s'more pop tarts and chocolate milk, it was!

Because B had slept all day, he didn't end up going to bed until around 1am, when I think the nurse took his iPad away and called it a night. I fell asleep well before that, as hard as I tried to stay awake. The next morning he was back to himself, and after another dose of IV meds, and a visit from a friend (thank goodness, because B was so bored he was climbing the walls), we got to go home.

His MRI came back fine, as did his blood work. Nothing glaringly obvious as to what is causing his seizures. We have an appointment with genetics Dec 3rd (which seems far away, but I'm told is actually great. There is a waiting list right now, so getting a date at all is apparently a miracle).

So now we wait. We wait to see if he has more seizures. We wait to see if his meds work. We just wait. We have an appointment with our pediatrician next week, and a follow up with neurology in a month. I hate no knowing why this is happening, but seizures can be such a mystery. For now B will continue to sleep with me, and I somehow have to find a way to be OK with him starting school. Every fiber of my being just wants him home with me, all the time. I just can't trust anyone else, even though I know I have to.

The fact that B has epilepsy is taking it's toll on him, too. Having to wear a life jacket whenever he goes swimming (but it's the shallow end, mom!!!!! Insert giant meltdown here). Having to quit gymnastics until we know things are under control (he might not be able to ever go back, since it's just too dangerous in case he was to seize). The fact that school will be different for him. He'll need to be helicoptered over, at least for a while. Yesterday he got really  upset over something, and said, I wish I never had seizures!!!

It broke my heart.

I wish you never had them, either buddy. It kills me not being able to fix what's wrong. But, maybe I can find him that super cool dinosaur, and make things a little more right in his world.

B, with the coolest dinosaur ever. 

The Guts to Make a Change

We saw a new neurologist last week. Of course I second guessed myself 1000 times, thinking maybe I was just being "crazy" for wanting a new doctor. Maybe I had expectations that were too great. Maybe people thought we deserved special treatment, instead of waiting like everyone else.

Can you tell I struggle with self-confidence?

In the end, it all worked out wonderfully. We saw a new doctor who listened. Who sat patiently as I asked many, many questions. Who made me feel like I was part of the decision making process for my son. Who understood how scary it was for us. Who didn't make us feel bad about wanting to be seen ASAP (like a sit down less than 3 weeks after the abnormal EEG, and second seizure. Awful to want that, I know). Who didn't downplay what was happening, just because there are those who have it worse (it's not a competition).

He explained the EEG B already had (something the other office had yet to do, even though I pretty much begged for answers), and told us he did in fact have a seizure disorder. Welcome to the world of Epilepsy.

He discussed medication with us, and gave us options. He told us he'd be more conservative with the medication B had been prescribed (the titration period), if we wanted to continue with it, but also supported us changing to something else (we did). He told us they would do blood testing, just to make sure there wasn't a genetic component to the seizures, and to rule out other medical causes. He gave us paperwork for school right then and there. He ordered another EEG so he could compare the two, and decide if B needs a MRI, or other tests.

It was just a totally different experience.

I don't think we're special. I don't think we rule the universe, and how dare a doctor not want to talk to us right away. I just think we are scared parents who deserve a doctor to answer their questions. Something everyone deserves. I am glad I had the guts to switch practices. That I was able to put away the "too nice" part of me, and do what was best for our family, especially B.

I'm hoping this is just the beginning of me feeling more comfortable speaking up, and advocating for our family, in all aspects of life. Sure, not everyone will like it, but I guess all I have to say to that is...too bad.

The little dude is worth it. We all are.