Wednesday, November 24, 2010

Is less more?

Well, yesterday's appointment couldn't have been further from my expectations. This will be a super quick summary as it's already noon here and I have yet to start baking my goodies for Turkey Day tomorrow (had lots to catch up on since yesterday -rest mostly!)...

First, we didn't schedule the surgery like I thought we would (or told we would). There seemed to be some confusion regarding whether or not a corpus callosotomy will be performed. After the first surgical conference (the one where they said a clear 3T MRI was needed to determine surgical candidacy), our doctor told us the proposed procedure would most likely be a left frontal lobectomy with the corpus callosotomy (a procedure usually done for drop seizures that disconnects the two side of the brain to cut off communication -therefore decreasing the chance for seizures to spread (or generalize). But, after the most recent conference, it was decided they would not do it. So where's the confusion? Well, once we met the neurosurgeon and he asked some questions, he started to question whether or not to go ahead and do it with the lobectomy versus waiting to see if it would even be needed. See, Austin does have a very very obvious and clearly defined lesion on his left frontal lobe. No doubt it's a cause for seizures. However, the million dollar question is...Is it the source of his drop seizures? Why? In his opinion, it's quite unlikely that such a generalized type seizure is originating from that one little place. Possible? Yes. Which is why he would like to just do the lobectomy and then, if needed, the callosotomy at a later time.

This was extremely disheartening. Although our doctor did not give me high expectations for complete and total seizure freedom with the surgery, he did sound very confident that this was the spot. The big bad spot that has wreaked havoc on our lives. That although not 100% sure this would be the be all end all, we had a very good chance. So, to hear this...very scary. And why not have one surgery and be done with it? Why take the chance to have to operate on my baby's brain a second time? In his opinion. Less is more. You can go back and do more, but you can't undo anything. I talked about my lack of recent research in my last post, but this one needs some googling. I will have to really understand more about this procedure before I will understand why he thinks two brain surgeries could be better than one.

We didn't get a chance to get too in depth with specifics. In part because our epilepsy doctor happens to be in London (he's always abroad when we need him) and couldn't be reached. He really didn't want to overwhelm us with too many possibilities. I think he came in with a plan of action and abandoned it when I told him how the drops ruin our lives. Even so, he still doesn't want to do the callosotomy with the lobectomy, but didn't want to mislead me as this would be a group decision. He thought it was worth another discussion.

So this is where we stand. Definitely a lobectomy -most likely the first of the year. Possibly a corpus callosotomy, but maybe not. We got a lot accomplished, huh? By the way, it's hard to really convey the intended sarcasm in writing! It was actually a colossal waste of a day. All of this could have taken place over the phone, and none of it was real news. I did get to meet the guy (and this is one that actually has a decent personality), but that's about it. We rushed out yesterday morning, fixed a flat when we were already running behind. Dealt with traffic delays and weather because this appointment was far too important to reschedule. Sat in the waiting room for two hours. To not schedule the surgery or learn anything we didn't already know. My whole body ached when we got home.

Now...I must bake!

Monday, November 22, 2010

Tomorrow's the day...

We will meet with the neurosurgeon, Dr. Yoshor, to discuss Austin's (potential) frontal lobectomy.

So far I'm relieved to say that I'm still relatively calm about everything. Why get too worked up until I hear what he has to say? That's what I've been telling myself...repeatedly.

It feels as if I'll be walking into this appointment with a blindfold on. Unprepared and under informed. I did my own research on this guy, and I'm comfortable with that part so far. I have not done much research on the proposed surgical procedure though. I decided to abandon the whole "internet medical degree" and go in with a fresh mind that's clear of previously read research studies and other parents' accounts. Why not be as prepared as possible? First, I couldn't find much on anything similar to Austin's case as a viable comparison. And second, because I didn't want any other studies to skew my thinking and understanding of what I'll be learning tomorrow.

This is not (at all) to say I don't have tons of questions ready to fire. And already gained knowledge from my two years of researching and following epilepsy surgeries. I just didn't think it was necessarily a good idea for me to go in with the assumption that I already know all about frontal lobectomies, or how it will affect Austin.

It could very well be just a coping mechanism rather than a game plan, but regardless, that's how it's gonna go. By coping mechanism I mean my way of not overwhelming myself before I hear it from the doctor himself. And not drawing my own conclusions and so on. One of my personality flaws is that I tend to over analyze everything. When I do that, I start to make my own assumptions and then the worry sets in.

Anyway, because I haven't spent every spare moment on googling frontal lobectomies, I am actually in a fairly peaceful state of mind. We'll just go in there and see what he says and decide from there. That's my plan. No second opinions until I speak to him, no freaking out over articles I've read that may or may not have a drop of relevance, and no false hopes.

That's it.

I'll definitely update at some point tomorrow or Wednesday.

Thursday, November 18, 2010

Life After Keto

It's been eight days since we said farewell to the keto way of life. I mean that literally too. It wasn't just a diet, but really and truly an entire life change. From calculating the meals to the these meals actually controlling what we could do and when, we had to shift the way we lived for over eight months.

And I'm still adjusting. Austin's doing a much better job at it than I am. The giggles at meal time tell me so. Don't get me wrong, I'm not missing the diet (at all), I'm just still trying reset my mind to regular life again. I still wake up in the morning and immediately look at the clock in fear that we may have overslept for Austin's breakfast, because that one meal sets the tone for our entire day. Meal spacing was very very important. If breakfast was late, lunch was usually late. If lunch was late then his snack was too, etc. As crazy as it may sound, the time he ate his breakfast affected what time he would be going to bed that night. Or, when I could get out and run errands, or whether therapies would be interrupted. The meals ran my life. Now, it's about getting back that spontaneity that I forgot about and not feeling like we're on lockdown anymore.

I'm still very hesitant about sweets and sugars. Honestly, Austin never really got full doses of that kind of stuff anyway. Everything I bought pre-keto was usually already the "no sugar added" or "unsweetened". When we started the weaning process, I imagined a pigfest of cakes and cookies and all the juice he could drink when it was over. So far he's had a few bites of cookie and he's still drinking water. But, hey, water's good. And now he loves the stuff. I see no reason to spoil him to tons of sugar where it will be a battle to get him to drink it willingly again. As far as the sweets go, the dietitian advised me to slowly add those in and to start with complex carbohydrates first. I'm really not in a big hurry to get that going like I thought I would be. The kid is happy just having his toast back!

As for the actual meals. That took me a bit too. I was really not expecting them to give me the green light on that particular day. I knew it was coming soon, but I wasn't sure exactly when. I hadn't been to the grocery store to stock up on Austin's old favorites yet, and I was still very much still stuck in keto-mode! So many people were anxious to know what I gave him for dinner that night. I'm pretty sure my mom cringed when I told her...salmon and broccoli & cheese (similar to a keto meal I would make him minus the oil and butter). I told her, But there's no oil and the butter was flavored with lemon! Oh, well. He enjoyed it.

It wasn't until the next day that the thought finally occurred to me that Austin could actually eat with us again. That I didn't have to make him his own "special dinner". Crazy, I know. But, when you live a certain way for so many months, it becomes normal. I've always been the first to admit that I'm not the biggest fan of cooking. I love the idea of cooking much more than the actual act of it. I dig the Food Network and love trying out new recipes...But, that's where my love of it ends. The day to day cooking...not so much. On the diet though, take out and cereal for dinner is not an option, no matter how tired or desperate for a night off you are. So, I'd be lying if I said my hubby didn't lack a home-cooked meal on a regular basis. The thought of cooking one more dinner would have sent me over the edge some days. Some days I would make up to twenty meals to prepare for the week, so Chad and I sometimes sacrificed because I was too pooped. He was probably just grateful he didn't have to manage the diet and prepare Austin's meals that he never once complained that it was chili dogs, sandwiches, or take out again for dinner. Bless him. lol

I have to say though, I've actually enjoyed cooking a little more over the last few days. Surprising Austin everyday with something new or an old favorite and getting his reactions have been worth it. After I (finally) made it to the grocery store, and cooked our first Austin included family dinner in over eight months, I couldn't have asked for a more delightful reaction. His laughing through the ENTIRE meal made scrubbing all those pots and pans no sweat. Hamburger steak with mushroom gravy, fresh baby spinach sauteed with garlic, onion, and bacon (we're Southern, bacon goes with everything -lol), mashed potatoes, and yeast rolls...The baby cleaned his plate with a smile. :) And let's not forget last night's first. Pot roast, carrots, and garlic & creamy potatoes (hey, I needed to use some of this cream I have left over..and yes, we (Southerners) love mashed potatoes very much -they too can go with just about anything)... Gosh, I sound like a facebook status where people are telling you what they're making for dinner. Any of you notice I've never done that? Because McD's is nothing to rave about! lol

And the seizures post-keto. Not what I would have hoped. Lord knows I didn't expect them to get better, but I was at least hoping they wouldn't get worse. It's been pretty rough. Whether or not it's because of stopping the diet, I can't say with certainty. It could be. Or it could be Austin's typical seizure cycling that he tends to do. Up and down to the point where you don't even know if meds are helping or not. When a change takes place, like a wean or med addition, I tend to "forget" how his seizures can fluctuate when there's been no change in anything for a while. I sometimes focus on the change that occurred and it's to blame (hence the Zonegran wean that took over a year). Truth is, there is a reason we chose to wean in the first place and it wasn't because of achieved seizure control. It was because on days like these, I thought why? Why put him and myself through this insane diet when he still has these days? And maybe stopping the diet is a teeny weeny bit to blame. We definitely saw great improvement at first. And maybe it was still helping to an extent and we didn't realize it. But, the risks of the diet (side effects such a ketoacidosis, elevated lipids, kidney stones, etc) were starting to outweigh the benefits. Not to mention the interference in his feeding skills and the strain it puts on the entire family. We probably saw a 50%+ reduction in seizures with a 100% reduction in drop seizures for the first two months. If you read this post, you know where I stand on that. I'd still be calculating, weighing, and scraping food right now.

We'll just have to wait this out and see....

Wednesday, November 10, 2010

Adios Keto

Little did I know that within an hour of publishing my last post, I would receive a call from Austin's dietitian saying it's okay to DISCONTINUE KETOGENIC DIET!!!

I had placed a call earlier this morning to report his trace ketone readings (she told me once I started seeing trace to no ketones we could probably discontinue). Of course she had to check with the keto team leader first, so I was skeptical that today would be the day.

The above photo shows just a few of our (former) daily necessities. I really wanted to put the scale under the wheel of my Pathfinder and put into Drive...But, what the heck, it may come in handy one day. lol

Goodbye weighing, and restrictions, and scraping every last bite. Goodbye greasy bottles and bowls and an endless sink of dishes!! Goodbye heavy cream, gobs of butter, and oily messes!!

Hello flexibility, munching, and MILK!! Hello Goldfish, and Teddy Grahams, and Cheerios!! Hello pancakes, and grilled cheese, and peas!!

Tonight's dinner has GOT to be good. But, I have NO CLUE what I will be making him! Too many possibilities!

I do know that lunch was a hit. That first bite of grilled cheese stirred up some major giggles! He actually got so excited that when he finished the few pieces I put on his tray, he reached over for the plate on the table. To the floor it went (of course I had my camera in one hand so I couldn't catch it in time). Bailey was happy. lol Thankfully, I had made myself one and hadn't started it yet. He's taking a big chunk of mine in the photo. :)

An actual update?

After months of biting my tongue, I guess it's time for full update. No surgery talk, just what's been going on. I'm still not quite ready for spilling about what's ahead. Maybe soon. Maybe not until we discuss specifics with the neurosurgeon on the 23rd. Because until then, I doubt my mind will be fully wrapped around the idea.

So, on to the latests...

As some of you know, we've decided to wean the ketogenic diet. We are in the very last stages now, and the anticipation of resuming a typical diet is growing by the day! Oh, I can't even imagine how much more simplified our life will become! Don't get me wrong, as each month passed, it did get easier...BUT, the fact that we will hopefully soon have the freedom to just go without an ice packed cooler with pre-made meals is going to change everything. No more strict windows of opportunity to get out and get back before mealtime. Trust me, as difficult as that's been, it much more stressful (for me) to line up, weigh, prepare, and pack food for an errand or outing. And I've tried to really stick to our schedule...Which, between Austin's naps and various therapies, it's not always easy to make it happen -whether I pack them or have to prepare it when I get home. I used to have days I would set aside to prepare the majority of meals for a week or two. I would freeze them and reheat them as needed. But, once we decided to start the wean, I've just been winging it everyday -especially since we starting lowering the ratio on a regular basis. Plus, I've gotten into such a rhythm that it doesn't take me nearly as long as it used to to get something whipped up. :) I remember the very first meal I made here at home. It took me nearly an hour to make his breakfast (egg, cheese, butter, cream, & applesauce)!! Now, it takes less than 15 minutes. Like I said, much easier! ;)

Another big one. We FINALLY (and I can't stress that enough) made it through the Zonegran wean. He'd been on that one for nearly two years. It was just one of those questionable ones that we would always second guess. The difference is absolutely remarkable! He's so much more alive now! That's why included so many photos. He keeps smiling and I keep snapping! I'll get 10-20 per sitting and when they're all smiles, it's impossible to delete! I've waited too long to get those again. Makes my heart all warm and bubbly. :)

We've also noticed quite a difference in cognitive and motor development since the wean. In addition to his brighter smiley faces, he's reacting to so much more. Initiating interaction, responding to requests and gestures, communicating his needs better...just to name a few. He's also starting to climb and has a new found need to explore his surroundings more. Before a couple months ago, I could strap his helmet on and let him go in his playroom with a gate at one door way and ottomans blocking the other. He'd stay there completely content. Or, I could leave him in his extra large play space (super large play pen) and he'd be fine there too. Oh, man...not now! He lets me know when he wants out of the play pen, and when I put his helmet on, he either reaches for my hand to help him climb over the ottomans or tries himself. He can climb onto the couch unassisted now (which takes encouragement, because he'd much rather be climbing OFF the couch) and has his route he likes me to take him throughout the house. (Because of the seizures, he still can't do this freely. When his drops came back last October, we had to start holding his hand again on the hard floors.)

So, how are the seizures after the Zonegran and diet wean? Well, they're not worse. But, he's most likely going to have surgery so they're very much still ongoing.

Saying goodbye to the diet is a little bittersweet. I'm dying for this to be over, yet a little sad to admit it was a failure for us. We saw so much potential in the beginning. Nearly two months of no drops was wonderful and to be honest, we probably wouldn't be weaning if they were still gone. With or without other seizures. The drops are what makes this 100x harder. The drops are what keeps him restricted and limited. No seizures are okay, but those complicate our already complicated life to an extent only a parent dealing with this would understand. To not be able to buy certain toys because they are a safety hazard, to have to make sure every seat has a shoulder harness, to have to pad everything imaginable, to have to carry him all the time or have him in a stroller because he cannot safely walk on his own has been indescribable as a parent. That's all I can say...there are no words to describe what this life is like with these drops seizures occurring on a daily basis.

THAT is why it's been so difficult for me to comment much on the possibility of surgery. Our life has been so full of accommodations that just letting him be is hard to fathom.

Austin loves getting his arms rubbed and tickled. He'll hold them up to you if he even senses your hand is nearby. In this case, he was holding it up for Bailey to rub. She obviously wasn't interested. ;)
But, I helped him out and got some giggles. lol

This was last night after an extensive play session. Don't know what got into the kid, but he decided to run sprints across his playroom until Chad intervened! We're still getting used to Austin sweating (he couldn't sweat while on Zonegran which we had to take very seriously as he could get easily get overheated. We had to strip his clothes off and his head was soaking with sweat (under the helmet). I just had to snap this new Nick Nolte 'do! lol

So his sweet little face has been breaking out since being on the diet. No one knows exactly what's going on, but it pops up and clears up on a regular basis.

I got him some awesome sensory balls for his bday. He LOVES the texture and I LOVE that I can usually get some belly busting laughs out of him when I rub them on his hands!

Flashing a smile full of Goldfish. He's finally on a low enough ratio that he can have them again. He enjoys every last one of them!

Friday, November 5, 2010

Is it just me?

Or does everything seem a little bit more beautiful today?

I couldn't get that out of my head as I drove through town today. Even lugging my 37 lb three year old into the post office didn't seem to break my smile. Yes, an errand as "simple" as a stamp run can put a damper on my day very quickly. Life's little dailys have gotten just a wee bit more difficult lately. The bigger Austin gets, the harder it gets. With the seizures it's impossible to just get him out of the car and put him down so he can walk with me. It's either the stroller (another pain) or my hip (which is begging me for the stroller). Not today. The load wasn't near as heavy or maybe I was stronger...Maybe a little of both?

That weight of "the not knowing, the what if, the when" was lifted from me today. I was stronger, I think.

The call came at 11:46 am. I had just gotten everything situated to check ketones (keto moms know what this means). I even remember what I was thinking just before I heard it ring. I thought, "Yeah, I'll bet he calls now, while I have a ketone strip end in my mouth, a urine soaked cotton ball in one hand, a syringe in the other, and Austin's bare-bottomed." No surprise there, two seconds later my phone was ringing. HA!

I pretended I was calm and exchanged the pleasantries, but my mind was screaming!!!! GET TO IT DOC!!!!

Anyway, long story short...The whole team was astounded at just how "absolutely, amazingly clear" the 3T MRI was. He said that was exactly what they were hoping for and they all agreed in favor of surgery.

Which will be (no major specifics until we meet with neurosurgeon) a left frontal lobectomy. They even said they didn't feel that any additional testing was necessary as the MRI was so amazingly defined.

We meet with Dr. Yoshor, the neurosurgeon, November 23.

I definitely have a lot more to say, but I'm still reeling and had a hard enough time just composing the facts...can't imagine interpreting what I'm feeling at the moment! Relief, disbelief, awe, anxiety, fear, satisfaction, gratitude...just to name a few.

We have more HOPE now!! The door is OPEN!!

Thursday, November 4, 2010


It's been months since my last post. It certainly hasn't been because I've been super busy. I just haven't wanted to to be completely honest. I really haven't had the desire to sort through everything we've been dealing with -in an emotional sense. Probably because I still don't even know myself what I feel. My facebook friends have an idea what's been going on for the last few months, and they probably also know I've become the "crazy dog lady" too What a distraction that has been. Much much needed. I needed something to take my mind off researching seizures and resection surgeries to keep me from going nuts.

It hasn't been working for the last few days. I just entered Day 3 of waiting on "the call". How a doctor can purposely postpone one of the most anticipated phone calls a parent can get is beyond me. I'm amazed at his audacity to make me wait like this. And for those of you scratching your heads because I haven't been in touch...

I'm waiting to hear whether or not Austin is a surgical candidate for epilepsy surgery. Every single time the phone rings, I start head spins and I feel nauseous. This makes the fourth time I've waited on a call like this in the past month and a half. First for the PET scan results, then the first surgical committee meeting, then the 3T MRI...Now the second surgical board meeting. Each and every time I thought we would get huge info and some type of direction.

Our lives have pretty much been on hold this entire time. Not knowing which way to go because everything is dependent on this call. And while I wait, I imagine both scenarios in my mind. Scared to death either way. Will I really be happy if he says they recommend surgery? Not really. I never ever wanted this. Relieved maybe...not happy. Will I be devastated if they say no? I don't know. I do know we will get a second opinion, but I honestly don't know how I will feel either way.

So, this is exactly why I haven't been posting. My emotions are swirling and it's been so much easier to let myself be distracted because until I know what their decision was Tuesday morning...there's just nothing. No news, nothing but nerves and confusion.

And just to recap all the evidence we do have to support Austin's (possible) left sided focus:

MRI with suggested dysplasia left frontal lobe (Feb 10)
48 hr EEG with slightly more activity in left hemisphere (Sept 10)
3T MRI with suggested dysplasia left frontal lobe (Oct10)
Early left hand preference with slight right sided hemiparesis (noticed Sept 08 -ongoing)
Visible right sided seizures (videotaped July '10)
Right hand irritation (May 08 -present)

Looks kind of convincing, right?

Not supporting this are FDG & FMZ PET scans that show right sided abnormalities (March 09)
That coupled with the fact that all the other evidence is subjective. Nothing is a clear indication or very well defined. It can all be interpreted differently depending on who is viewing it. THAT's why I'm a wreck. Because it could really and truly go either way.

Maybe we'll find out today...maybe.