Thursday, December 30, 2010

Two weeks...

It looks like. I'm not certain that it's all officially coordinated, but as of yesterday, we were still on the schedule for January 13.

Of course, it's that time of year. Between holidays so no one seems to be in the office, so I didn't get to personally speak with the schedule coordinator. She's on vacay until the 4th. And the neurosurgeon...out of the country until the 10th. She was nice enough to answer emails yesterday from the clinic ::note sarcasm here::. Apparently we will have a busy week leading up to surgery with imaging and pre-op for the 7th or 10th, clinic visit to discuss procedure with neurosurgeon on the 11th, and the actual surgery to take place on the 13th.

How considerate of them to give me such advance notice! ::note more sarcasm here:: We won't know until the 4th whether it's all official and if we'll need to be there on the 7th for the imaging and pre-op. I don't even know what that consists of yet. The guy I spoke to was just a messenger with absolutely no clue who just reading an email to me.

For the life of me, I don't know how we will work this. I am a planner, people!! AAHHH!! I don't know any specifics and it's driving me nuts. If we have our appointments on the 10th, 11th, and 13th, should we just plan to stay the entire week? Or drive down each day (2 hrs each way). I can't even imagine how exhausting that will be for us. One day is enough to require a full days recovery. Why would we want to put ourselves through that when we will need all the energy and strength we can muster for the days after? Seems like a simple decision, right? Well, here's the catch. Although Chad has a wonderful paying job, he gets zero paid vacation or sick leave. So, there's not only expenses to think about if we stay, but a complete loss of wages for probably two weeks. I guess that's what our savings is for, right?

I'm rambling here. So much clutter in the head going on right now. I think I'd feel better if plans were concrete. I hate limbo. Hate it, hate it, hate it! And this is all just what's on the surface. The planning that I feel like I should be able to control. I haven't even touched on what I can't control.

It dawned on me just this morning while gazing into that sweet face of his and gently stroking that thick brown hair. He was having a cluster. Parents who have comforted their kids through these things may know what I'm talking about when I say it's the single most heartbreaking yet endearing experience. He always makes the most precious expressions that melt my heart at the core. A look that's half pure sweetness and half sheer confusion. I hug him. Kiss his forehead. Run my fingers through his hair. Admiring the perfection that is my son. Two weeks, I think. Two weeks and our lives will be forever changed. Whether seizure free or not, that's not certain. Reduced, hopefully. But, regardless, we will have embarked on yet another journey where there is no turning back. My head is spinning with uncertainties, hopes, fears, and gratitude. I'm grateful that this is even an option. But, I'm scared to death of it too.

And this is only a glimpse of what lies beneath the surface. It's what I'm holding back in an attempt to keep myself sane and why I seem so focused on planning. The planning is not the most important part. But, it's what I feel I can control the most. And I can't even do that right now.

To top it all off, this kid has almost completely refused to nap for nearly two months now. With the holidays, worrying about the surgery, and no clear headed thinking time of my own, my brain has really been on overload. He's also been waking between 4 and 5 am without fail every night since being off the diet (and occasionally before then too). It's like his little body has an internal alarm to get up and have seizures. Sometimes he's only up for a few minutes, sometimes it's two hours. And Bailey...oh my. What was I thinking? I got her a mini soccer ball for Christmas (which she absolutely loves) and I've been having to hide it at times for some peace and quiet. Seems like she's ready to play when Austin's ready to rest and vice versa. So when he does actually nap, it's sometimes short-lived because I forgot to hide the ball. Maybe once a week he'll go down for more than 20 minutes. Please, someone tell me this is just temporary! Surely he's not done napping yet. Don't three year olds normally still take naps???? The only time he seems to want to take a good, solid nap is when we need to be somewhere. Typical.

I will definitely post when I hear from neurosurgeon's office. Maybe Monday, but most likely Tues. or Wed.

Until then...

Wednesday, December 22, 2010

This will undoubtedly make you feel all warm and fuzzy..

And give you a reason to believe in the magic of the season. My last post touched on why I love Christmas so much. This is a very clear illustration.

Thanks to Jen for sharing this with me, so I can share it with you!

A truly amazing display of generosity. (It's a little lengthy, which is why I'm including the link rather than the post itself. I promise, though, you'll want to read this.)

Tuesday, December 21, 2010

Slo-Mo

Never in my life have I been so eager to get through December. If you've been reading, you know about me and Christmas. I usually want this month to last forever. Wishing there was a pause button to keep December 26th from coming. Always a sad day for me. Seeing everyone resume their lives and get back to the grind. The joy and generosity slowly fading. Just another day.

Sure, most people love this time of year too. And a lot of people are sad to see it end. I'm probably not alone on that one. Despite the chaos, the shrinking finances, and the stress of figuring out how to divide our time between families, it's still always been my favorite month of the year. And I've always always always hated to hear people say they'll be glad when it's over. I've always despised hearing people say they hate Christmas. Made me so sad. Yeah, it's stressful. Yeah, it can be a financial burden. But, why does that have to be the focus? People have always said my attitude would change when I had a kid. They were right. And wrong.

My single greatest joy of the holiday season is seeing people happy. Honestly. When I was a kid, I'm sure it was the gifts. Now, I'd much rather give a great one than get one. I'd be lying if I said it didn't stress me out sometimes trying to find the perfect gift. And I rarely do find it. But, when I do, and I see their reaction...priceless. And, no, it's not always about the gifts. I love to see people get inspired to make someone happy. I love to celebrate the birth of my Savior. I love to believe there is something magical about the season. Love, kindness, generosity, and...miracles.

And don't get me wrong, I'm not hinting that I don't like Christmas or that I'm dreading it this year. But, I'm completely distracted from the festivities. All I can think about is Austin and January. Austin and January. Austin and January. Where is my fast forward?

A couple weeks ago, Chad asked me what I wanted for Christmas. It took me a week to give him any ideas at all. By the way, he completely spoils me. But, there's a catch. I HAVE to tell him what to get me! He will not go shopping without a detailed list. Drives me nuts because I adore surprises. Anyway, I was absolutely stuck. I so didn't care. I wanted to tell him no one could buy me what I want this year.

I want the miracle.

I want no seizures. I want a happy, safe, energetic, laughing, running all over the house, excited, talking Austin. I want to hear him tell me what he wants for Christmas. I want to leave out cookies for Santa with him. I want to see his face light up when he opens his gifts. I want him to open his gifts. I want him to tell him about the Baby Jesus. I want him to oohh and aahh at the Christmas lights.

That isn't something I'll find under the tree.

So, where's my fast forward?

This month is dragging by. I mean dragging.

I still love this month, I truly do. But, dangit, it's going by way too slowly. You woulda never heard me complain about that one before.

We're nearly there, patience, Holli. I've waited two years to find out if he was a surgical candidate. What's a few more weeks? Hard to explain how this feels, some of you know exactly what I'm talking about. Patience is hard to come by when your child's future is possibly at stake. And the potentially life altering moment is penciled in on next month's calendar page.

Does it make any sense when I say I'm ready, but nowhere near ready? Probably not.

This month's slow motion feeling is excruciating, but I'm thankful it's this month and not April or July or something like that. At least it's the one month I truly adore, otherwise I'd be in trouble. :)



Merry Christmas!!

Thursday, December 16, 2010

It's not official yet...

But, we have a tentative date set for the surgery.


January 13.


That is...if we can get everything all in alignment for that particular day. Our neurosurgeon's schedule coordinator lady is supposed to be letting me know fairly soon whether this is actually going to happen. He will be traveling the first week or so of January and won't be back until the 10th. She said she never schedules surgeries for him on his first day back (thank goodness), and we need another clinic visit to discuss the procedure and ask questions (yes, what we should have done at the appointment in November). So, that leaves the 13th. Pending O.R. and imaging availability of course.


I'm annoyed -as usual. We still don't know about the corpus callosotomy and I practically had to stalk her to get this info. Call me demanding, but I really sort of expected them to get this lined up in the very beginning. You know, see what's available and call me. Not, get yet another run around where I feel like I have to stay on top of them and make them do it. Yes, I know there's a lot involved in a procedure of this magnitude -staff, OR, imaging, etc. But, this is not my job. I shouldn't have to keep calling to check in to see if it's been done. I shouldn't be sitting here worrying that she's not getting everything in order and we may lose that slot. I am ready to get this behind us.


Anyway...that's all I know.




And as a side thought...



Why couldn't Austin have flashed just one of these cutsie smiles while we were getting portraits yesterday???

Tuesday, December 14, 2010

Because that's usually how it happens...

I'm short on Christmas cards yet once again. And because they're sold in sets of 20 rather than individually or 5 (or even 10 would be ok). I apologize early, but this year's budget is already maxed to our eyeballs and ordering 20 more plus more postage is would have it bursting wide open. I can't justify a final tally of nearly $100 on cards (being the crazy dog lady that I am, I ordered cards from an organization that I'm not even using -sorry, Chad if you're reading this, I may have forgotten to mention that).


So, the budget-friendly Christmas card (crooked and all from my lack of patience with my scanner) :



Monday, December 13, 2010

In photos

I gave a very long and ramble-y rundown of our past Christmases and traditions in my last post. Kind of depressing if you ask me! I was definitely feeling the heat of the holidays and stressed to the max over my super high expectations.

I've caught my breath now. And exhaled. ::smile::

And I'm ready to enjoy this to the fullest extent. It's far from what I imagined, and certainly not how I hoped it would be. But, it is what it is.

Now, for our Christmases past and present...the fun way! In photos!



Bailey's first Christmas 2006
When Chad was the only brown eyed boy in my life and my only 'child' had four legs. Yes, I was even the crazy dog lady back then!












Austin's first Christmas 2007
He was two months old. I was still sporting the baby weight, and never in my life was I more sleep deprived!









Austin's 2nd Christmas 2008
I had to learn to get creative with the photos since telling him to smile and him actually doing it were out of the question. Lots of fun, but definitely hard work.













Austin's 3rd Christmas 2009
This one was rough. He didn't want to do anything but get up and walk. That Bailey, though, she'll sit as long as you have a treat nearby.







Austin's 4th Christmas 2010
Yep, I decided to go ahead and do photos this year! We haven't done the portraits yet, but we're planning on it anyway. These aren't what I'm using for cards...More of a glimpse of the process of getting a wiggly toddler to stay put, smile, and look at the camera -all at the same time no less! It didn't go over that well, but I was able to find a few that will work.






Thursday, December 9, 2010

Christmases past...

I've always loved Christmas. LOVE it. Even during the stress of the commercialism, lack of time (and usually finances too), and chaos (did you know I used to be a postal worker? lol). I still loved it, and one month of being exhausted was always worth the joy of season. I've even loved it during...Infantile Spasms.

I'm extremely traditional. Really, ex-treme-ly. It kills me to break tradition -especially Christmas traditions. Sadly, getting married (not sadly that I'm married) added even more traditions to the mix and all those long hours keying thousands of Christmas cards at work complicated my previously quiet and calm life. It got to the point where it was physically impossible to keep up with the flow. When I was growing up, we had a traditional Christmas Eve watching of A Christmas Carol (absolutely the George C. Scott -no other would do). It was always right before bed, there was just something magical about it. It didn't matter how many times I would watch it (but I only watched it on Christmas Eve -like I said, extremely traditional), it always evoked sense of love and gratitude within us all. Like watching it the very first time. It's been several years since I got to watch it with my family. I completely missed it year before last, and I think last year I made Chad watch it with me, but not on Christmas Eve. Those are busy busy for us now. His family also has a Christmas Eve tradition. A family gathering in the evening and then gift exchange that night. Gosh, it was so incredibly hard letting that one go. I tried to make it work for about six years. Working on Christmas Eve, heading to the in laws, quick gift exchange, then off to my parents for the movie. Then back to our home (which has never been less than 30-45 minutes away). Then back up to our parents' town the next day for dinner and gifts with my family. A very long day almost always followed by work the day after.

My point? Just a glimpse of how hard I try to keep tradition going. When Austin was born, I just had to get Christmas portraits. He was just over a month old when we got them done. His birthday falls exactly two months before Christmas, so I thought that instead of getting annual age AND Christmas portraits, that we could just get them done at one time. The first year was just how I imagined it. The next year...well, he'd been seizing for almost eight months by then. It was his portraits that made me see what the meds and seizures were doing to him. Just two months before his seizures started I had some five month portraits done. I had some of the most engaging, alert, and vibrant smiles you'd ever seen. By Christmas, we didn't get a single smile on camera. Not one. His face was drooping from the loss of tone and drool was in nearly every photo. But, I still went the next year (last year) and we did get a couple smiles. I booked for early November this year. He was doing SO well. His giggles and smiles. Seizures were still a problem, but manageable (since we have to keep his helmet off). We've had to reschedule twice and it appears that the smiley, giggly boy I was so excited to capture on camera is fading. Now I'm debating postponing again indefinitely.

It seems like he always slips about this time of year. The first year (after seizures started), we'd just started Vigabatrin that November. We'd increased his Zonegran so much that he was like an empty shell of a boy. No sparkle, no interaction. Last year, we'd been tweaking his meds again. He had such a wonderful summer full of new developmental gain and laughter. By November, drops were back and life was barely tolerable. Same goes for this year. We weaned the diet and all seemed to be okay in the beginning. Now...he's had four bloody lips in less than a week. And I watch the kid like a hawk. I'd probably be pushing to get him back on the diet if it weren't for surgery. He can't be on it if we go that route. And the jury is still out on that one. I'm waiting on a call as I type. I'll get into that in another post.

Again, my point. As much as I want to just enjoy this time and keep it going as if he were okay, I just don't know if I have it in me. Oh, and the Christmas cards! His first Christmas was simple, sit him in his bouncy seat by the tree and have Bailey sit beside him (she's a posing pro by the way). The next, a little more challenging, but we made it happen in his Radio Flyer wagon with him as Santa and Bailey a reindeer lol. Last year? A nightmare. He was miserable and just wanted to get up. Of course, me trying to take that task on completely by myself was a really bad idea. How in the world will I pull it off this year? And do I even want to attempt it? The Christmas tree is just a few little Austin steps from a brick fireplace, a ceramic tile entry, and a sofa table. Red flags galore! But, how will I feel next year when I'm putting out my Christmas decorations and there's no photos from this year to display? How will I feel when I don't have any cutsie Christmas tree photos to scrapbook? Defeated.

I've always always always gotten on to my mom for letting trivial things get to her during the holidays. Now look at me. It feels like total defeat. Every Christmas I've tried to make the best of it and say next year it will be different. Next year. Three down and it's not different. It's worse. That's not to say I don't have faith that we will get through this. I'm just disappointed that it hasn't happened yet.

Maybe there's something better in store for us in 2011. I can only pray that there is. Until then, I guess I will just have to suck it up and get through one more? Hopefully?



(I'd planned on sharing the Christmas card photos from the past three years, but I forgot that only last years are on my computer! Maybe I'll dig them out and post them soon along with this years when we get it done. Yes, I'll probably do it. Breaking tradition does not come easily for me! lol)

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

Waiting

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 lately...lol. 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 trembling...my 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.

Thursday, July 8, 2010

Imagine my surprise...

...when I actually received a call back this morning. I had already decided I would have to place a call myself after Austin's breakfast to give them a nudge. Surprisingly, I didn't have to.



And once again, I was shocked when I found out our doctor actually wanted to do more investigation. Another dreadful EEG, possibly up to three days this time depending on how long it takes to capture all his seizures. And a PET scan. I was confused on this one since I wasn't aware that there was one in the area that was capable of accurately scanning Austin. Turns out, it's not at our hospital, but another one in the community. Wonder where that may be. Maybe the hospital I'm trying to get into. Regardless though, I'm pleasantly surprised that they're taking this seriously.

There definitely are several questionable factors in the equation. The first being the EEG. The second being last year's PET. But, with solid MRI evidence, they think it's worth checking out. Especially since his seizures have taken on a new appearance, the premature preference for his left hand, and the obvious signs of right sided discomfort in connection with seizures. She certainly seemed hesitant in giving me much hope, but the fact that they are willing to check it out is enough to go on for the moment.


In other news, the doctor I was trying to switch to...not taking new patients...as of two weeks ago. That so figures. On top of that, there's not another epilepsy specialist in the hospital. I asked about a recommendation for another one, which turns out to be about 5 hours away in Austin. But, my mom actually found a job posting where they are looking for new epis, so we'll see what happens there.

Wednesday, July 7, 2010

Here goes nothin'

In a desperate attempt to get this whole MRI thing resolved, I broke down and emailed Dr. C. I had originally planned on waiting until hearing back from our clinic and getting their opinion first, but I just couldn't help myself. It tore at me all weekend and keeping in mind their history of response time vs his...It was a no brainer.

I spared no detail in my original message, fully expecting a negative response. What I got?

Not quite as negative as I thought. Although he said it could be an indication of bilateral abnormalities, he did leave the door open and seemed eager to look it over. He explained that focal slowing typically means there is a structural lesion on that side, but still wanted to review them before making assumptions. Of course, there's no telling when our hospital will actually get the discs sent over. Why can't I ever remember to request copies while we're there? Ugh, I want to kick myself sometimes. Actually, in my defense, I truly don't think I was expecting any change in the MRI. I thought my correspondence with Detroit was history. I guess it may be after he reviews everything. But I gotta keep trying, right?

Monday, July 5, 2010

Regarding the MRI

I've had a little more time to process the information I received on Friday (the left sided findings from the MRI), and realized this probably doesn't change much. It may, in fact, be another indication of bilateral abnormalities, largely due to the VEEG he had back in January. Although there was no focus detected, there was focal slowing to the right side between seizures. Not the left. The two do not correlate at all. That's definitely not good.

I was so distracted by the fact that there was finally evidence that supported my left sided theory that I didn't stop to really focus on the main issue. Yes, there's a left sided abnormality. But...it's extremely likely that there's a right one as well. Which probably explains why I wasn't informed and steps were not taken. I'm certainly not defending a doctor that did not have to decency to discuss my son's first abnormal MRI, but I'm starting to understand why is wasn't a pivotal moment when the results came back.

I'm still planning on trying someone new, regardless of the outcome. Many of you know I've never been satisfied with our current hospital. But, it was the only place in our area that any of the other doctors and specialists we've seen have recommended...especially Dr. C. I truly valued his opinion and if he said we should try to stick with them, I thought I'd give it another go with an open mind. Well, it's been over a year and I'm still not happy with them. I'm thinking I'll most likely just try to get an appointment at the other hospital in the area and just see if they're a good fit and go from there.

I mainly just wanted to clear up the inconsistencies from my last post. I knew at the time that the EEG wasn't particularly supportive, but for some reason I thought it could be wrong or not even be a major factor. But, after all the nonstop thinking and comparing other test results over the weekend, I finally stopped and saw it for what it really is. Very likely bilateral. I really just wanted to believe that it wouldn't matter. I guess that's just what happens when my heart responds more quickly than my brain.

Saturday, July 3, 2010

New findings

I finally got the disc of seizures/behaviors together to send to our clinic. Then spent an entire week anxiously waiting to hear back, and finally yesterday I did.

Even though I included a very detailed note, it still took quite a bit of conversation to convince them of my purpose. Which, by the way, was two-sided. First, I wanted to know if they could identify the types of seizures Austin's been having, and second, whether or not there is any significance to the right sided behaviors and seizures. I practically had to spell it out. And what did I find out?

Well, first of all, they are categorizing his seizures as tonics and atonics.

But, the most surprising of all?

ONCE I finally got the message across that I wasn't concerned that the hand slapping and leg grabbing were seizures, but rather an aura of sorts, I got her attention. By the way, I still had to get past the fact that our lead doctor didn't care if they were auras or not. He said that regardless if it is in fact an aura, it doesn't matter. I told her my concern wasn't whether it was an aura, but does it give any indication whatsoever of a focal point? That in combination with his recent right sided seizures AND the early preference for his left hand.

"Well, that's a very good question, and that's exactly the types of things we like to look for in trying to locate a focal point."

Okay...so....?

Here's the most mind boggling part for me.

She looks back for the report on his most recent MRI (from February). I never did get the results from this one. I cornered our doctor in the elevator and asked him while we were in the hospital initiating the diet if he had results, and he hadn't reviewed it yet. He pretty much said he would let me know if there was anything different. So, about five months later, I'm still assuming it was clean. But it wasn't. And no one notified me.

Apparently, there appears to be dysplasia in his left frontal lobe. LEFT.

And when I inquired about whether or not there was any significance to his latest behaviors and seizures, he didn't even bother to think about it. He just said the hand slapping is not a seizure (which wasn't at all my question) and that it could be an aura, but it "doesn't matter".

Needless to say, I'm 100% convinced that it does matter. And the doctor I was speaking to (she's the one we've been dealing with for the diet, but reports to our main epilepsy specialist) agreed.

She said that she certainly believes this warrants further investigation. Duh.

However, there is one potential problem. There is no correlation with his last VEEG (from January). Actually, even though there's no focus indicated during the seizures themselves, it shows more activity on the right side between seizures. Which is not supportive of his MRI and behaviors.

She said they definitely need correlation to pursue surgery, and will discuss with our other doctor what steps we may need to take in order to get more information. She's already mentioned the "E" word. I hate that one. EEG.

I, on the other hand, have another plan in mind, depending on what his opinion is. I'm thinking (especially if he blows me off again) about another doctor in another hospital. In fact, I think I've already found one. They boast a PET scan & the only MEG scan in North America specifically developed for children. And it just happens to be in the same medical center. I don't know what the chances are for getting a MEG scan. Or the PET. Or even if the PET scanner they have can accommodate a child Austin's age. But, if we don't transfer we certainly won't get them done. And if we do transfer, we'll at least have our foot in the door and be one step closer to getting these tests done.

I was just talking to my mom this morning. I think the part I have the most problem comprehending, is that this guy has all the education and the resources to try to make a difference in a child's life. My child's life. And, as she said, he dropped the ball. Now, I don't know whether or not Austin is a surgical candidate, but what if he is? And this doctor doesn't even care. This isn't just any situation. It's my son's future. His entire future is on the line here. I've completely lost any and all confidence I had in this guy, regardless whether or not Austin's seizures can be stopped by surgery. I just can't trust that he's trying everything in his power to help us.

So, that's where we are. Oh, and by the way, we're going down on Austin's ratio on the diet. Seizures and lipids are just too high to continue like this. The risks are starting to outweigh the benefits. Our plan is to lower it slowly and monitor closely for changes. If the seizures don't change we will keep lowering it until we either: a) see a change, at which point we will reassess the diet's effectiveness, or b) have him completely weaned from the diet.


For any of you parents that have dealt with the surgery, I'm curious how many of you have had solid EEG evidence correlating with the PET and/or MRI. I know it can't contradict, but how many have proceeded with surgery without a useful EEG?

Tuesday, June 22, 2010

Another clip

This is another clip of Austin grabbing his right leg and slapping his right hand before/during/after the small set of spasms. I find it extremely odd that there were right sided abnormalities found on the PET scan. If anything has ever been consistent during this rollercoaster of IS, it's that he has never strayed from the right hand issues. This has been going on since just before I saw the first spasms. It has never been his left hand and the frequency and severity of it has only intensified. Not only that, but it goes with his partiality to his left hand (he's shown a preference since he was 9-10 months old). And now? His head jerks to the right with certain types of seizures. I so wish we could get a repeat PET scan. I just wish we could do it closer to home. I guess just because he has consistent left hemisphere symptoms, it doesn't mean it's not bilateral. Not that I'm wanting to revisit the surgical world...but, I just wish I knew why his behaviors and symptoms don't seem to support the findings.

Monday, June 21, 2010

What kind of seizure is this?

After months and months, I was finally able to catch this seizure on video (47 seconds into the video). I have no clue what type it is -if it's not a spasm. I'm hoping someone more knowledgeable can help me figure this out because my description to our epi hasn't resulted in a definitive answer.

Also, check out how Austin grabs at his right leg about 30 seconds before the seizure. This is typical as is the way he slaps his right hand (in another video I'll post soon). Another thing I've noticed and been trying to catch is the change in his left eye after these seizures. I know it appears to be the helmet, because when I take it off in the video, it looks normal again. I think this is just a coincidence because his eye does this with or without his helmet on. I'm curious what's causing this. I've noticed changes in the appearance of his eye since his diagnosis. I always thought it was nothing, until lately when it started getting more pronounced. The eye may be difficult to spot...the video quality is awful.


Thursday, May 20, 2010

Days like today - I didn't want to...

But, I couldn't not acknowledge this day...or this entire week for that matter. I mean, it's sole reason behind this blog.

Another year has gone by. Two total since we began this journey. On May 19, 2008, we made the two hour drive to Texas Children's Hospital in hopes we would be sent home with a new found peace. Instead, we spent the rest of the week there. And on this day that year, May 20, 2008, Austin had his first EEG. We were still clueless as to what that really meant. Even after returning home with a new diagnosis, we had no idea what it really meant.

I wish I never really did have to find out what infantile spasms meant. Thinking back to the prego days, I always wanted a happy, healthy, thriving baby. Health was critical. And he is healthy. But, in all the times I worried about things that may happen or complications or diseases I feared...I never once thought Gee, I really hope he doesn't develop epilepsy.

Nope, never entered my mind. Never realized how severe it could be. To me, epilepsy was not an ongoing battle. People I knew of that had it only had occasional seizures. Certainly not 100+ every single day. And none had deficits because of it.

Even with all my new spiritual growth and optimism, I can't deny that days like today don't nag at me. I do still grieve over the life we didn't have and the milestones we have yet to reach. Days like today force me to wonder what life would be like right now had the term "infantile spasms" never been said two years ago today.

I would probably still be an over the top safety nut...a constant worrier...and a proud mama. I would most likely be dreading the beginning of potty training days right about now. I bet I would probably enjoy getting out more than I do now. We probably would have made lots of family outings by now...restaurants, shopping, the zoo, boating at the lake, parks, and maybe even a vacation? Who knows, I might would even be working and/or thinking about family additions at this point.

It's so easy to go "there". That place you wish you were. So easy. It's sad...very sad when you snap out of it and realize you're not there and may never be. But, if these past two years have taught me anything, it's that anything can happen. And not just devastating epilepsy disorders like infantile spasms. But, good stuff too. At least five of the eight kids that I have followed closely over the past couple years are seizure free now. Just because something horrible has happened, doesn't mean it will always be this way. That kind of thinking and my faith is how I manage days like today.

We'll get there too.

Thursday, May 13, 2010

Jay Mohr on Diaper Duty

I had to lighten the mood a bit since my last post. This definitely made me laugh! :)


A must read for any of you potty training parents...or actually just about anyone with a sense of humor!

Jay Mohr on Diaper Duty

Thursday, May 6, 2010

In honor of Mother's Day

So, this Mother's Day weekend has already gotten off to a terrible start. I woke to a text from my mother telling me to call her when I got up. I knew before even calling what happened. My great grandmother was gone. I can't even describe what an emotional year this has been with both sides of my family. We've lost too many loved ones lately...Chad's family included. And to make matters worse, it's almost Mother's Day. And I've had the looming reminder that we buried my other grandmother eight years ago this week. There's more. Just last week Chad lost his aunt and two days later I lost a great great aunt (my great grandmother's sister). All mothers. And grandmothers. Two were great grandmothers. And one a great great grandmother. All dearly loved and all will be dearly missed this Mother's Day.

Sunday, May 2, 2010

Is it May already?!













Yikes, has it really been that long since my last post? I've been so buried under the day-to-day that I didn't realize it's been over a month.

I have to say...it's been a relief to have had a break though. Freeing myself from the nonstop obsession with IS has helped me. Not that I don't still think about it nearly every minute of every day, but it's different when I'm not swimming in it like I was before. I like the new me. I get more done around the house, I spend more time with Austin, and I'm finding new interests (like being a rockstar in my spare time -a lot of you will know what I'm talking about!)...

Once again though, I have to say...I miss the close contact I had with everyone on here. I thought of little Trevy on his birthday (a date that's permanently stamped into my mind because we are birthday buddies) and wondered how his mommy was handling this momentous milestone. I've had Bennett in my thoughts as well...curious how his new school has been for him. And precious Sophie. Her one year mark since the surgery is fast approaching. What a big girl she is! I've especially thought of Maddie and how she's done post-diet. And big girl sitter Madie...and the sweetheart Colby. All these kiddos have always been on my mind. But, I haven't had the courage to dive back into that. Scared I would get back into old habits of the seizure obsession and disorder comparisons...knowing the fears I've worked so hard to conquer would most likely creep back in to haunt me again. I just couldn't go back there just yet. Trying to keep a safe distance for my family's sake, because I know they prefer me to be here rather than seizure land. Not that checking up on our buddies is a bad thing. But, three of our buddies are seizure free now -which is WONDERFUL! But, that's where my fear comes in. I get scared of never getting there. Comparing and obsessing and despairing and pitying my situation. That was not working for me. I LOVE these kids. I love their parents. I love that they have had the chance to try and start over. I've just needed to live here in my own reality for a while and not compare Austin to other kids. And it has helped me celebrate the smaller things he accomplished so much more.

Anyway, on to business...We have seen Austin transform again since the Lamictal wean was complete. Blowing noises are back (he stopped a couple weeks into the start of the med and started back two days after coming off)! Interaction is considerably improved. Smiles, laughs, giggles, toy banging and functioning!! Lots of great new moments around here!

The diet is still going well. My mom and I have a "date" about every other Saturday where we make Austin dinners all day to freeze. It makes this SO much easier. Usually the only meal I will prepare on the spot is breakfast -the others are pre-made. She has been a tremendous help! She knows when I'm starting to wear down and always steps in and helps...whether it's helping prepare food, buying new contraptions to simplify my life (see pic below), or watching him for me for the night so I can relax a bit. I honestly couldn't handle any of this diet or disorder without her.

Last night was the best surprise ever...no noticeable seizures for at least 5 waking hours!! Yeah! And this morning started awesome as well with only 2 seizures in 3 hours.

We will continue to tweak the diet and medication to get even more improvement. My hope is for him to get off the last two meds sometime soon. We saw cognitive AND seizure improvement after the Lamictal wean. And thinking back, the best he's ever done (seizure wise and cognitively) was when he was on the least amount of AEDs. I'd like to see how the diet will work for him without the meds. There are sometimes more improvements in kids once all meds are removed. It's a goal anyway.

So, that's where we are. Finally moving in the right direction!

Austin's new "no helmet zone".

Saturday, March 27, 2010

The long haul

Okay, so my imagination was bigger than my common sense. I had big plans of keeping in touch, updating on our progress throughout the diet, etc. Obviously, I underestimated the time this would require. Still totally worth it though!

We continue to see improvements. Not as steady or as huge as I anticipated, but they're there nonetheless. That's good enough for me to settle into this for the long haul.

The thing I really really love about this diet...That there are SO many variables. So if something's not working, there are many areas to explore and tweak. It can certainly get overwhelming at times as far as knowing where to look for problems...but it's not like a med where you try it and that's that. Triggers for seizures can be in the food, meds, fluids, calories, timing, meal spacing, ratio...I could go on and on. So, for me, I feel like there's always a light at the end of the tunnel.

What I hate...the portion sizes and the redundancy. I'm not completely sure where Austin ranked in the appetite department compared to other kids his age before the diet, but these amounts are definitely not what he's used to. He always seems hungry, even after our efforts to address this. He cries when meals are over or when he knows it's getting time to eat. It's hard denying food to him when I know that's what he wants. Even fluids are restricted. And I hate that we have to cycle through the same boring meals over and over. We don't have access to the nifty KetoCalculator yet, so I'm stuck with our dietitian's handful of meals. I've found a few recipes online that I've asked her to calculate for us, but that becomes a pain. Wish I could do it myself.

There are trade offs for sure. I would gladly trade in my free time to prepare his meals for even a little seizure control. Good days are down to the 50ish range. Bad ones...about 100. I remember when the good days were at least 100. I have to remind myself of that every time he has a bad day. The spontaneous full body drops are gone. There's been only one incident since we started the diet and that's even questionable, since I didn't see him fall. He tends to trip a lot as his balance has never been on the stable side. The head rocking has almost completely subsided. I'm not sure if I ever got into this in detail on here, but he would have these moments that he would fixate on an object in his hand or his hands and rock his head from side to side -states we couldn't snap him out of. They were always associated with seizures in the beginning, but it became so frequent that nearly every time he was still he would do it. It's very rare for him to do it now, and if he does, it's very brief.

We decided to wean him off Lamictal. What a terrible med for him. It did nothing but produce side effects and possibly more seizures. Only two more weeks to go on the wean. Yeah!!

So, we are very pleased with the results so far. We didn't get to bring him home from the hospital seizure free, but we did bring home tons of hope for it in the future.

We'll most likely be sticking with it for a while.

Friday, February 19, 2010

Where to start...

This new, rigid schedule has me spinning...

We still see some improvement, although some days are better than others. I'm back to my ridiculous counting habits trying to spot trends in improvement and decline. Nothing to bank on yet...I see great hours that leave me excited and filled with optimism, only to see the tally marks fill the page the next hour.

Still, even with these horrific hours, the grand total for the day consistently stays under 150 (worst day so far 149 -the day he was extremely acidodic...the best 61). On average he will have around 80-90. Not great. But better.

There are questions regarding, well, just about everything. From the food ingredients to his lotion. What is keto-friendly what is not? I had no idea that something as simple as chapstick or toothpaste could throw him out of ketosis or cause increased seizure activity.

So because of this, every issue seems to be magnified...like his irregularity (fun times). Even more so when no one seems to be available to answer these questions for me. Who would have thought that upon getting released from the hospital (before a holiday weekend nonetheless), that his epi would be going on vacation or that the doctor over the diet would be out sick for an entire week! Of course, the dietician can only tell me what's safe for the diet -not what to give him or how much.

I'm pretty much bound to the house (and practically the kitchen) at least until this lifestyle becomes a bit more familiar. There are ALWAYS dishes in the sink since every meal requires nearly a cabinet full of cups and bowls for measuring, cooking, serving, etc. But, all of this I will gladly do as long as it seems to be helping. Seizure freedom is the goal...but even relief is welcomed right now.

It's exhausting. But, not nearly as exhausting as seeing forceful drops and falls every 10 minutes -which is where we were. He was clustering or dropping literally every time I turned around. That was much more stressful than checking for ketones, weighing food, cooking, and adding up fluids.

Even though my having to keep such a watchful eye for seizures and all the new added responsibilities seems to be more than I can handle at times (if you only knew the state of my laundry pile up!), seeing him go two hours without a seizure is more than worth it.

Tuesday, February 16, 2010

Finally...

...something that seems to be at least helping the seizures.

They are still very much here, and very much a part of everyday...but they are better.

There was some improvement before we even left the hospital (I didn't want to get ahead of myself and post it though), and at least 50% or more reduction until Sunday. Sunday and Monday were a bit higher, but today is much better. I've only seen 34 so far (before the diet, he'd already had over a hundred by this time).

It's still way too early to make any assumptions about how well it's going to work for Austin, but it's looking very promising at least right now. I've never seen such consistent results from any treatment since he began having seizures almost two years ago. Even though he's been topping out between 60-100 (average) a day this past week, and this would have been extremely high for him a year ago, it's quite an improvement. They had been steadily increasing since August, and by Christmas, I would estimate he was having somewhere in the range of 200-300 a day. So, 34 at 4:30 pm is wonderful for him right now.

Like I said though...still too early to draw any conclusions...but he's doing very well right now. His energy level is still quite low, but there seems to be improvement there each day as well.

I'm just going to take this one day at a time and see what happens. Hopefully, we will continue to see more and more improvement...

Friday, February 12, 2010

keto is underway


I thought I'd let everyone know that we have initiated the ketogenic diet and arrived home from the hospital. All is well so far.




As with any hospital stay, we were stressed out of our minds. I read up on the keto diet before going, but there were still many surprising twists and turns. For one, Austin became extremely acidotic immediately. Our clinic does not require a long fasting period, but Austin was an exception since he had to fast for sedation for the MRI and LP. He started getting moderate ketones within 6 hours of starting the diet and large ketones soon after that. The next morning he (and his bedding) were covered with the previous night's dinner...yuck!


But, with meds, we've been able to keep the acidosis under control and everything else is looking good. He seems pretty disappointed with the quantity of meals (he's quite a hefty eater), and the fact that water is his main source of fluid...but other than that, he's adjusting well. A little weak and sluggish, but that was to be expected as well.


A few things I've noticed about myself and dealing with the ketogenic diet...


#1 -I MUST be organized!!! To keep this from consuming me & my entire day, I've found that the more organized, the better.

#2 -I MUST stay positive!! If this is going to be our new way of life for the next few months (or even years), I'm going to have to accept the changes and make the best of it.

#3 -Creativity is important! Some of the ingredients alone are enough to make anyone want to gag, so incorporating them in different, exciting ways is going to be the key to getting that heavy cream and canola oil down the hatch! :)

#4 -I've gotta keep the faith! Probably the most important because with it, all the others will fall into place much more easily. Austin's miracle treatment is out there, and I must treat this like this is it. Otherwise, I may not have the motivation to stay organized, or the energy to stay positive, or the patience to get creative.


I must applaud every parent who has taken on this diet and stuck with it. It's much more involved than I ever imagined...and I expected it to be difficult and tedious.


So...that's our latest.

Thursday, January 28, 2010

In case you were wondering...

Yes, we're still here.

I've been SO out of touch with just about everyone these days. I've got a boatload of reasons, but I'll spare you...

The main reason...there just hasn't been much to report. Seizures have been extremely high (& extremely intense) so my eyes stay on Austin all day (sometimes all night) everyday. In my spare time I completely shut down and focus on doing anything I can to distract myself from thinking about seizures. So, there's the condensed version.

I'm updating because I actually have something new. We had a 23-hr EMU study done at TCH last week (that's an EEG for anyone who doesn't already know). Still no hypps, but still no focus either. Still generalized...blah, blah, blah. It didn't give us much to go on in the way of treatment options.

So...after much discussion, debate, and procrastination, we've decided to go ahead with the ketogenic diet. We check in Sunday, Feb. 7 and will be there until that Wednesday or Thursday. While we're there, we'll most likely get a repeat MRI scan and lumbar puncture.

I'm sorry I haven't been better at keeping in touch with everyone. I've seriously needed a break from this though. It all just became too much to handle -and I'm still working on it.

I'll try to check back in soon...