Time for a change

Past time, actually.

Oh, the decisions...

I worried about this last year. Austin is getting BIG. And he's definitely a mover. I knew it wouldn't be long before a crib was no longer an option. It made me nuts anyway. The padding, padding, and more padding to protect his little head from nasty drops. Even with all the extra attention I've put into that thing, I still worried. I bought a video monitor a long time ago so I could when he was having seizures and/or getting up acting wild. That helped A LOT. It helped me see what was going on so I'd know whether or not I needed to intervene or leave him be. Unfortunately, there were still incidents. Despite all the padding, he's still gotten bloody lips a couple times from smacking his head on the rail.

Then came surgery talk. I held off on any special equipment in the hopes that seizures wouldn't be an issue anymore. Surgery came and went. We arrived home still with seizures, but also with a sensitive incision and weakness to boot. That crib was completely out of the question. Chad was generous enough to give up his spot in the bed for Austin and take the couch temporarily.

And just when we thought we were approaching the end of our special sleeping arrangements, I found out his crib had been recalled and the exact model was associated in an infant's death. Assuming Austin is twice the size of a 12 month old that collapsed the metal bars under the mattress, I KNEW he wasn't getting back into that thing again. So, instead of taking it down, returning it, purchasing another crib, and padding it so he could outgrow it in a few months, I thought it was time to start exploring other options. It's only a matter of time before Chad's back can't take the couch anymore. It's not exactly ideal for me either, though. I bound to the bed once Austin's in there.

He certainly cannot sleep in a typical toddler bed. He has no safety awareness and, of course, has the dangerous seizures. It must have an enclosure. Something soft enough to not cause injury in the event of a drop seizure, but durable enough to withstand his mighty 37 lbs of weight -and activity. He definitely likes to get up and move around in the bed.

This is what I've found so far (with the help of my mom and Chad):


This is the Pedicraft Homecare Canopy Bed. It will definitely suit our needs, but comes with a hefty price tag and not to mention jumping through hoops with our insurance company, a vicious cycle of paperwork, evaluations, doctor's script, and lots of waiting I'm sure. Time is of the essence here, a guy that has to get up at 4:30 am for work can only be patient for so long. lol Also, not exactly aesthetically pleasing to the eye. ;)

Then there's this one, The Courtney Bed. Much more visually pleasing and less sterile looking. Not as pricey, but not really affordable either. Another long wait since I think they build them as you order them. We'd probably have to pay out of pocket for this one. LOTS of color options.

Then, The Safety Sleeper. Basically just an enclosure for a bed. Originally designed for kids with autism, but their website states parents of kids with seizures use them too. Much more affordable but definitely out of pocket, plus we'd have to buy a bed in addition. It's portable and can be used on an air mattress. Shipped directly, other color options, and padding available for the metal bars on the side. I like it. My main concern is the durability and weight resistance. I'm waiting on a response from the company now.

And thanks Danielle for showing me this option, The Nickel Bed Tent. I really like the price on this one. Much MUCH more budget friendly. I have a big decision to make! (I tried uploading a photo, but dang Blogger won't let me rearrange my photos!)

As promised

Now for the GOOD of the surgery.

I've spent so much more time emphasizing what has gone wrong and the negatives since surgery, it's time to share the wonderful changes we've seen.


First his smiles...I cannot get enough. I keep taking photo after photo after photo! There are never enough smiley photos for me. Before surgery, I was lucky to get a real smile (not seizure associated) very seldom. VERY seldom. A vibrant smile where he's not only smiling with his mouth, but his eyes too.

And that LAUGH! Oh my goodness. I don't think many people even knew what an Austin laugh sounded like. They were extremely rare. I'd get giggles or chuckles from time to time and the very very occasional belly laugh. Always short-lived though. Now? I hear them ALL THE TIME! A silly face or sound is enough to get him in stitches. Absolutely amazing!

The walk. I didn't fully realize until just this weekend (exactly one month after surgery to be exact) just how much his walking/balance has improved. We were extra cautious with his free walking (putting the helmet over his incision and of course because of the seizures), so we were walking him by hand this whole time. Even then I knew there was improvement because it was so much easier. Instead of dragging his feet, hanging, and wobbling all over killing my back, he just walked. Like a feather. Also, before surgery, he'd run back and forth across his playroom with his head down making noises and balance was so bad. Tripping, stumbling, and just generally wobbly. It's like a night and day difference. He walks with his head up looking for things to explore. The video I shot doesn't do him justice. I think he's over stimulated in his playroom now (I need to get cleaning some of that stuff out), but it's the only place I felt comfortable letting him go without being right beside him (so I could hold the camera). Typically, he likes to stay out of there and likes to take his time walking and looking around. Like a different child, I swear. I think the improved balance has also made the difference in climbing on the couch too. He started doing that late Oct or early Nov. It was difficult for him though and he actually quit doing it altogether before surgery. He doesn't have an overwhelming desire to get on the couch most times, but I can put something he wants up there and he climbs with ease up to get it.

Then there's the attention span. Devon, you can vouch for this. Unless he was mouthing a hand held toy, he would give something 10-30 seconds..tops. He had very little interest in anything anymore. He may try to work it briefly, but then he was up ready to move. He has puzzles that we couldn't get him to finish. Now, he can sit there and take every piece out. And that Leap Frog barn toy. I cannot count the time he's spent playing with that thing. I'm not kidding when I say he can sit there completely content playing with it for 10-15 minutes. MINUTES!!! Probably longer if I could handle it. It has removable magnets and a push button chicken that plays music. He first started just trying to take out the magnets. Then he'd rub it over and over (typical pre-surgery Austin move). Then, just like he always knew, he started pushing the chicken instead of rubbing it. Now he pushes it with one finger. I think we've been working on that for over TWO YEARS! He's done it before, but I don't think it was intentional. There's absolutely no doubt now. Trust me, he does it over and over. And over! And just to test out the consistency, I've introduced other toys with push buttons. He's not quite as interested in that many other ones, but his new skill is consistent. And the barn toy has found a rival...the steering wheel (although not quite as pleasant to listen to -lol).

Let's not forget the increased vocalization. Seems like every week he takes on a new persona. One week he was affectionately called Goat Boy for his crazy goat sounds. He's been the emphysema patient (he'd cough to get our attention and to tell us "no"). He was the gasper last week -thank goodness that one's played out! It sounded like he was gasping for air and he'd do it over and over. I even took him to his pedi. You should have seen some of the looks I'd get when we went out. Imagine a kid laughing really hard and trying to catch his breath with a loud gasp (only subract the laughing). He wasn't used to laughing so much, it was like a new sound. A new sound that he wanted to experiment again and again and again. lol Laugh or no laugh, the sound just stuck. He was my hummingbird -humming all day it seemed at times. And here lately, he's the snob. His "emphysema" has been refined into an arrogant sounding "A-heeem" or "A-hmmm" or "A-huuuum" (with just the right amount of snobby undertone). It's not just the new experimentation of noises but the increased vocalization to express himself as well. He cries when he doesn't get his way (and he definitely knows what he wants and doesn't want by the way). If I'm walking him by hand and steer him in a direction other than what he wants, crying. If I put away his barn toy, crying. If I steer him away from his barn toy, crying. If I offer him a sippy and he doesn't want it, crying. If I give him peas on his tray without grilled cheese, crying. As terrible as it sounds to be applauding crying...it's not. I'm just happy to get his opinion and I can deal with the fits. :)

Overall, he is also much calmer. I have yet to see one of his crazy bursts of energy. I always suspected that behavior was associated with seizures. I can't even describe in detail what that involved. He was completely unaware of anything around him, he'd get worked up in this state and dance around in circles, stomping his feet and basically just going nuts. If he was sitting he'd kick like mad and you could just tell he wasn't in control. He does have his moments now, where he zones and exhibits seizure like behavior, but I have not seen one of those fits that I described since surgery. And this may seem small, but it's one of the first things I noticed after we got home and settled. He doesn't continuously kick his feet in the high chair anymore. He was always either kicking me or kicking his leg all the way up to the tray. Up and down from the footrest to the tray through the whole meal. It wasn't unusual for me to have bruises all over my thighs from this. Hasn't done that once. He just sits nicely with his feet properly positioned on the footrest. I wish he was still as calm as he was the first week when we got home. He would sit and watch TV, let me hold him as long as I wanted, cuddle up to me in bed and rest his head on my shoulder. He's much busier now, in part probably due to his energy level, but partly due to the seizure activity as well. Regardless, it is still not the level of restlessness he had before surgery.

Trust me, there is more, but this turned out much longer than I had planned. I've been meaning to do this for weeks now, and after the series of depressing posts, I thought it was time to let everyone know it's not all tears here. Sure, we're disappointed he's still having so many seizures, but I'm still oh so grateful to see so many improvements elsewhere.

Austin Feb '11 at OneTrueMedia.com

My balance is 90% improved, I walk with my head up now, I can climb on the couch SO much easier, and I'm pushing buttons on purpose! With ONE finger!!! Oh, yeah and I LAUGH so much!!!

If only Ms. Brenda could see me now!

Make an on-line slideshow at www.OneTrueMedia.com

Information Overload

We had that all important appointment with our epilepsy specialist this past Friday. Unfortunately, I didn't get the news I wanted to hear.

We talked past, present, and future. I did get the information I was seeking, just not what I was wanting.

The first burning question was WHY WHY WHY things aren't playing out the way they had originally thought immediately after surgery.

The answer?

Let me start by saying that we are dealing with lesional epilepsy. There was a clear lesion on Austin's last three MRI scans. In cases of surgical intervention with lesional epilepsy, the most common predictor of a successful or favorable outcome is the ability to remove all affected areas depicted on imaging (or MRI). Failure to resect the entire area of abnormal tissue shown is the most common reason for the surgery to fail or not produce a favorable outcome.

Austin had an incomplete frontal lobectomy -meaning the entire lesion as seen on the MRI was not removed. They could not safely remove the entire area without causing harm (right-sided paralysis). At the back of the frontal lobe lies the motor strip (this is where the motor function controlling his right side resides). Removing that removes his ability to move his right side. Even though that area was clearly spiking (favorable for seizure production) during electrode placement in surgery, they felt it better to leave it alone. Austin is quite delayed in every area. However, his mobility is one of his stronger areas. Even with a clearly defined lesion (abnormal area) on his MRI, a deficit such as paralysis would be devastating to a child with so many other "problems". They wanted to leave him with this function and see if removing the other area would be sufficient. They also did not want to take the chance that there could be more extensive abnormalities causing seizures that MRI was not showing, and removing that would mean causing paralysis and still not stopping seizures. I did not even consider this scenario, and it was not explained to me until I asked him point blank, Why? What is more devastating...a motor deficit involving one side, or daily seizures affecting his development? He definitely answered my question. More devastating would be paralysis on one side AND seizures.

They also felt that the areas that were removed were so significant that they anticipated a huge improvement. They felt it was enough to make a huge impact, and in the case that it didn't, we could always go back and take another look. The areas removed could have been enough to suppress any other abnormal areas from producing seizures -or it could have the opposite effect...the removal could make any other areas take over and produce seizures. This is what he feels happened.

We talked about other scenarios as well. Austin has confirmed Focal Cortical Dysplasia Type II (or FCD Type II). This type tends to be more extensive and widespread. It is the leading cause for intractable epilepsy. It could be that the only remaining area is the motor strip and removing that (causing paralysis on his right side) would stop the seizures. Or, it could be multilobar (involving other lobes of his left side) in which a total hemispherectomy (complete removal of the left side of his brain) would work. However, there is also the possibility that it is in multiple areas ALL over his brain -right hemisphere as well. That is the worse case scenario because that would mean surgery would never be an option.

Not that we are talking surgery again. I did want to know ALL our future options though. It's not completely out of the question later on, but there would have to be more convincing evidence ruling out anything that suggests his dysplasia is bilateral (both side of the brain). Right now, though, all we have is the MRI which showed the lesion to be contained to the frontal lobe. It may or may not be in other areas and is just not showing up (like his previous "normal" MRIs). We just can't take the chance that it is far more extensive in which case another surgery could be unsuccessful. My heart could not take that again.

In my heart, I do not feel it is bilateral. Although my eyes are clearly not enough to validate this, I truly believe it is only the left side. I could be wrong. What do I know? But, if seizure appearance really does play an important role in determining which side is affected, it is clearly only his left. I don't think I have ever seen a left sided seizure. Sure, he has generalized seizures, but almost all the seizures I see definitely have more of a right sided appearance. I've pointed it out numerous times. And when I had no clue there was left frontal lobe dysplasia, I knew something was going on with the left side. Even when there was absolutely no other evidence to suggest this. They are more right sided now than ever. And he has a strange new behavior that involves picking at his right thumb (always associated with either seizures or seizure behavior, aka the zoning) in addition to still rubbing his right hand before/during/after seizures and/or clusters. I feel just as confident as I did before, but I'm leaving it at that for now. It has only been one month since surgery and we are in no place to be considering it again. Our wounds are still too fresh to even really go there. Not to mention Austin is still healing and will need much more time before another surgery is even an option anyway.

We discussed our present options. We don't have any new meds to try. We didn't get a good start on the LGIT (low glycemic index treatment), thanks to the steroids wreaking havoc on everything. Which reminds me...the steroids, although showing some success (drops are down and there are extended periods with no seizures at all), cannot be a long term treatment. There are too many health risks and side effects associated with them. When treating seizures, they are only meant to be short term. Either they will stop the seizures or they won't. Improvement is not enough. The only thing worse than a med not helping is a med that helps that has to be withdrawn. That is where we are.

Since we have no more meds to trial, we start over. He asked me which ones I would like to give another try -ones that I thought might have helped. He said there is a possibility they will help now -due to the time that has passed and the areas left from surgery may be more responsive. The only ones that came to mind were zonisamide (Zonegran) and Depakene. We have a long history with the Zonegran and I really didn't want to go back there (we finally got him off after two years of trying last fall). He was on Depakene for about six months back in 2009. During that time he had no drops at all. I always blamed the vigabatrin for the drops since they started when he was first given it and stopped when he got off. During the vigabatrin wean, we added the Depakene. It wasn't until a month after stopping Depakene that the drops came back. Our lives were so much different before the drops came back. I really leaned more toward starting Depakene again first, but he settled on Zonegran. We started him back on a decent dosage. No wasting time on this trial because I was adamant that I didn't want to draw it out again. If there is not significant improvement within a couple weeks, we will go to Depakene. Hopefully, we will start the clonazepam wean sometime soon when we're not making other changes. I'm dreading that one, but there's absolutely no reason to have him on it. The only reason he is still on it is because it will be a very long and difficult wean and there have always been other changes taking place. I'm going to ask if we can maybe to a little at a time in between other changes. The key is to not make simultaneous changes. Which is why we decided against the LGIT for the moment. He said we should keep it in our back pocket for now and rethink it if these other two meds fail. There's also the ketogenic diet we can consider again since it did have an effect. No comment on that one for now.

We will go in April for another follow up and an MRI to check that his brain is healing properly. Then, we will have an EEG.

So, that's it. That's the plan for now.

Ping Pong Anyone?

Never in the almost three years of dealing with daily seizures have I ever been so indecisive about our situation. Sure, it's been up and down since this all started, but it's never changed so rapidly over such a short period of time -multiple times at that.

Before his surgery, his changes were almost always gradual. He's never had consistently high or low amounts of seizures, but the inconsistencies have never been to this extreme. There is only one time that I can recall where seizures were so scarce that I could actually imagine them stopping altogether. One time in nearly three years. And he wasn't seizure free for even a day. Instead of having five or six clusters of 15-90 seizures, he would have random, single seizures scattered throughout the day totaling maybe 15-25. I think that lasted a couple weeks. It was immediately following the ACTH wean while he was on the lowest AED dose he's ever been on (50mg of zonisamide). Then, just like someone flipped a switch it was over. Clusters started back up and he was having (on average) 50 a day. I never realized at the time that I would eventually wish he was only having 50 seizures a day. That was a long time ago. Ages it seems now.

From that point on until now, we've seen them gradually evolve. Over the past two and half years, we've seen new ones appear and disappear and reappear. We've seen intensity and frequency increase and decrease. We've seen development progress and regress and progress again. We've seen his personality peek and decline. It's been a never ending cycle of changes. And the only thing that was ever consistent is that nothing was ever consistent. It's what we began to realize as our normal. We adapted.

As humans, one of our most basic survival mechanisms is our ability to adapt. Adapt I have -without even realizing it most of the time. Little by little. I slowly changed and adjusted my expectations from praying it would stop so we could resume our lives to praying it would stop so we could save our son's life. Three years worth of daily seizures, I know now that there's no turning back. I also know that our life is no longer on pause until we can stop the seizures. This is our life. The damage has been done and it's unlikely we will ever be able to repair the damage that has been caused by the thousands and thousands of seizures he's had in his life. It's been a very very slow realization, but it happened.

I adapted.

The difference, though, between what has transpired over the last few years and now, is the fact that nothing happened overnight. Other than that infamous day of diagnosis, we've had the luxury of gradually adjusting to and accepting the changes that have taken place. Not now. We've seen more change in three weeks than we saw in three years. And it changes EVERY SINGLE DAY. Just when I think it's better, it gets worse. And when I think it won't get better, it does.

I can't even describe his progress. I've never been so completely confused. Picture different types of seizures, intensity, frequency, clusters, no clusters, alertness, little alertness, interaction, little interaction, laughter, and screaming. Then jumble all those up into every combination imaginable. And change it everyday. That's what we're seeing.

I've said it many times before, I expected to see seizures after surgery. I expected mood swings and irritability. Our doctors even prepared me that I may see different types of seizures immediately following surgery. But these extreme changes occurring every single day, four weeks after surgery, I did not expect.

Yep, today is exactly four weeks since surgery. Four weeks ago today, I was sitting in the waiting room at TCH anxiously waiting for those phone calls from the OR. For six excruciating hours, I waited. I can still vividly remember almost everything about that day. Surrounded by friends and family, we were praying for our miracle. With every minute that ticked by, we got closer. I can still almost feel that hope coursing through my body like it did that day. Finally, I thought all day. Finally, Austin was getting his chance to overcome this. A real fighting chance.

And here we are. Still no closer to knowing anything than we were four weeks ago. Still praying for improvement. We do see it. Then, we don't. Then we do. I have to admit, there is still overall improvement, but it's not enough. Had I known where we'd be four weeks out before the surgery, it certainly wouldn't have been enough then either.

How in the world do I adapt to something that changes every single day? It's difficult not to get my hopes up when I see him go hours and hours without a seizure, something we never ever saw before surgery. On the flip side, it's difficult to keep my hopes up when the days seem no different than before surgery. We've never been at such a crossroads before, and it's never shifted so much from day to day.

I've never been so eager to go see our less than personable epi. We go tomorrow for our one month follow up. Maybe we'll get some insight into what's going on and where to go from here.

We don't have an EEG scheduled (why I don't know), but I'm in the process of collecting some of Austin's seizures and behaviors on video to take with me tomorrow. He's going to see what's going on one way or another!



By the way, I do appreciate all the advice, support and encouragement I've received over the past month. Whether cards, balloons, sending food, prayer chains, comments here, texts, phone calls and emails...I feel very blessed for our support system. I haven't been great at keeping up with many of you, but I am still very grateful and nothing has gone unnoticed.

Mommy vs Doctor

That's how it feels sometimes. Like when we went behind his back to see Dr. Chugani in Detroit. We never discussed it with him. Not even once.

We've been seeing him for over two years now, and I have to admit, it's been a love-hate relationship. Lately, it's been less lovin' him, since we got home anyway. A panicked mother who has just let her son have brain surgery to control seizures that are nowhere near controlled may just need some comforting and reassurance...especially from the doctor that recommended it. Not from a nurse relaying messages that has no earthly idea what's going on. And that's why there's been less lovin' and more...well, hate is a strong word. Strong dislike is more like it. ;)

So, to the point. I quickly realized, after several failed attempts to get this guy on the phone, that we were going nowhere. And I was desperate. Desperate to get back that little boy with the sparkle in his eyes. The one we saw for a week and three days after surgery.

We racked our brains trying to pinpoint what happened. My mom kept mentioning the steroid we had to stop. I immediately blew it off because it was prescribed for swelling after the surgery. Finally, when I was at my lowest point, I decided to google it. To my surprise, there were actually a lot of indications that it could have been making a difference.

I finally managed to get our doctor's nurse practitioner on the phone and explained to her everything that has taken place. I couldn't stress more that I felt like something had happened. The only major change in anything (besides the Benadryl -which had long been taken out of consideration) was the discontinuation of the steroid. She agreed another trial of it was worth a shot. If nothing else, I would be at peace knowing we tried it.

Our doctor couldn't have disagreed more. The first words out of the NP's mouth when she called me back were that he was not happy with the proposed trial and that he felt it would have no effect at all. But, he agreed we could do a very short trial and gave dosage and weaning instructions for the next 20 days. Also, he felt so strongly that it was a waste of time that he wanted us to start the LGIT diet simultaneously.

Ugh, the thought of another diet makes me nuts. More on that later...

We started this dexamethasone trial with our doctor's instructions and permission but without his blessing. He must think I'm crazy. How could I not want to try it though? If that were the only change between a dream and a nightmare, wouldn't anyone want to try it? If for nothing else, to rule it out?

It's Monday. Day 5 of 20 of the trial. The last day for three daily doses. Tomorrow we go down to twice daily. The results we've seen have been confusing to say the least. Thursday (Day 1), he went over four hours with no seizures that afternoon. Then a rough night followed by a rough morning. Then, almost nothing for 20 hours. A medium intensity head drop and a few light jerks. We haven't seen such long breaks like that since that first week after surgery. Overall, frequency and intensity seem to be much better.

Almost ALL of the ones he does have are SO blatantly right sided it makes me cringe. Eyes to the right, head to the right, right arm flying up or out, right leg jerks. From everything I've read, obvious right or left sided seizures typically indicate issues on the opposite side of the brain. Austin had his LEFT frontal lobe resected. He was having right sided seizures before surgery. He is STILL having right sided seizures. It makes me so angry that they left that tissue there to keep producing seizures.

In any event, we are trying and trying to duplicate that what appeared to be success -or immense improvement. The steroid trial seems to be making a difference. Whether it's overall effects will be enough, I can't say. It doesn't seem to be consistently getting better with every day, it's more like complete unpredictability. He does amazing for maybe 12 hours, then we start all over. But, at least there are those amazing moments sprinkled in there rather than it getting progressively worse like it was before we started it. I have no clue what to expect from here on out.

And, of course, like with any steroid treatment, there are major side effects. The most obvious being IRRITABILITY!! The 'roid rage has begun. For the first time since his surgery, I'm flying solo here with him. It has taken me HOURS to write this post. Constant interruptions...this kid can go from laughing to SCREAMING in seconds. Everything seems to set him off -music, singing, loud noises, and sometimes nothing at all. The photos below are a typical meal lately.

Happy as can be one minute...

'Roid rage the next...

I think I started singing him a song in this particular fit he had. Tears, lip puckering, snotty meltdowns...and nothing seems to help. I remember reading that Vitamin B6 is a mood stabilizer. I think he took it when he was on Keppra (another AED that causes extreme irritability). Wonder if it helps on steroids...