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...

The Good News

I guess I wouldn't blame you if you've forgotten about us. There have been very few reminders on my part to keep you up to speed. But, I guess if you're reading, we haven't been completely forgotten, huh? :)

You know how it goes, after such a long lapse it's hard to recap the entire series of events, but I'll do my best.

The past few weeks have had me either completely away from the computer or just plain too tired to sit and focus on it. It's been my last priority I guess I could say.

My old blogging used to serve as my own personal (and free of charge) therapy, but I'm just not thriving on it like before. I'd like to keep friends and family in the loop, but it's doubtful that I'll be releasing much of that old emotion for a while. Just not feelin' it anymore. I have been popping in occasionally to my favorite blogs but haven't quite had the concentration or energy to compose a comment.

So...for the updates.

We've started a new med, Lamictal. Slow intro on this one. Going up by 5mg twice a day each week. I believe we're at Week 4 and have two more to go until we reach the recommended treatable dose of 30mg twice daily.

We had a visit with the epilepsy specialist on 10/30. Besides my being dog tired and sick that day and him telling us that Austin will most likely die without immunizations, it was routine. Could have had this appointment over the phone. No labs, no eeg, no new meds to discuss (since we'd already started Lamictal two weeks prior)...just a "keep with the plan" and "see ya in three months". Oh, and the "you need to get Austin's immunizations up to date or he'll die". That I wasn't really fond of. I'm not a moron. I think I know the vaccs are important. But, the rock and the hard place saying pops into mind. Enough said.

I actually made an appointment with the pedi for a "revised catch up vaccs schedule", but I ended up being a no-show and rescheduled. He wants to give him the MMR and Varicella to start. I've got until the 20th to either get them or back out again. We'll see. No easy decision.

On the seizure front...not much to report there. Same ol' I guess. Although we are seeing some variations of his typical presentations. Instead of a quick head drop sometimes, he freezes with his head down and eyes locked in place...sometimes arms frozen in extension. This is new. About three weeks new. He doesn't have many of those in comparison to the more common drops and clusters though. Oh, and I've been seeing some head/arm jerks to the right. Also new.

Development has it's ups and downs. Progress here, regression there. Changes from week to week really. Eating suffered for a while, now it's number one in terms of progress. Now, play interest is low. Oral up one week...down this week. Never know with this kiddo.

I guess the most noteworthy piece to mention has been my continued focus on Christian Healings & Miracles. That's where my attention has been lately. Reading, studying, practicing, and last weekend attending a seminar in DFW area (about a 5-6 hr drive from here). I have books, cds, dvds, cards, prayer cloths, you name it. I've got it. And I've poured every ounce of myself into these. And have been just trying to spend some time with Austin minus the distraction of what's going on in cyberspace. Trying to keep the positives rolling.

It's probably the main reason for my hiatus. But certainly not the only. In the past three weeks, we've had birthdays (2), well checks, an epi visit in Houston, a touch of sickness, a highly anticipated trip to Dallas...and a death of a beloved family member, Chad's grandfather, Cowboy. So, to say we've had our hands full is an understatement.

I so wanted him to hang around until I got equipped with the knowledge and understanding of this healing thing. I'm still learning. After countless hours of prayer & reading & listening, and a six hour seminar, it's still a work in progress. It's actually a very simple concept, however, it can get tricky and complex to anyone raised under different teachings. It's certainly not alternative...I don't want anyone to get the wrong idea here. It's just not what I was taught in church. It's not twisted interpretations or radical thinking. It's just taking the Gospels and bringing them to life...here...today. It's been quite the task of unlearning a lot of previous beliefs. One being that a miraculous healing is like winning the lottery. That some people will just get lucky. That's so not supposed to be the case. It should be flowing just as frequently and should be just as accepted as someone getting saved.

And I'm not going to force this on all my readers (if I have any left lol). I'm just simply bringing it out in the open where anyone who may be interested can learn what I have. Any many will not want to. And that's cool. Religious views cannot be forced. Some of you will not accept this until you either a) see it or b) seek it.

This blog was created (in the beginning -before the true reality hit and my emotions took over) to serve as a central place for everything Austin. Austin's progress with IS, development, etc. I'm reverting (from my soap box) and holding to that from now on. I just wanted to give you an idea on where I am in the scheme of things and let you know that I am happy to share if you want to learn more. Freely I have received, freely I will give. Just drop me an email ( chadburnett@att.net ). I'm tellin' ya, it's totally worth a look.





Heb 11:1

two

Well, the big day came and went. He's officially two as of Sunday. Two. Can't believe it, I really can't. This year has completely flown by. Yet, each day seems to drag on and blur into the next. Weird.



Honestly, the anticipation was much greater than the satisfaction it produced. Austin was not in the best of moods. At all. We had increased his Zonegran the night before the party, so he was groggy and over stimulated by the commotion. Not that we even had many people here. We chose to do a small, intimate celebration with just close family. Last year, having about 30 people cramped in my not so big house was a challenge. Visiting with friends and family I hadn't seen in a while, coupled with making sure everything ran smoothly, and not to mention the cranky birthday boy who had refused to take a nap prior...I think I was over stimulated! Anyway, small and toned down was the goal this year. I wanted to spend more time with Austin without worrying about making sure the chip bowl was full and that everyone had something to drink. It would have been perfect had Austin been a bit more alert. The seizures on Friday were horrendous which prompted me to make that tough decision. I had to choose between the seizures or alertness. The seizures won.



I don't think I got a single photo with a smile. But, that's okay. Next year will be better. I know it.



He didn't scream through "Happy Birthday" this year. That was a plus. I don't even think he got cranky at all. Another plus. But, he wasn't himself. He tends to keep inside his shell with people around...and then there's the increased med on top of that. After everyone left, he did perk up a lot. Playing with all his new goodies and running around his play room.



Sunday was his actual birthday. I wanted that day to be just the three of us (four if you count our dogger, Bailey:) We spent it playing with new birthday toys and relaxing with the birthday boy. Seizures were much better which kept the emotions in check. I wasn't sure how I would be in that department, which is why I chose to do his birthday party the day before. So that if I did have a meltdown, I wouldn't be raining on his party.



Another difference from last year. He was able to actually feed himself the cake rather than just smash it in between his fingers. What a sight! The boy was picking up half of it and cramming it in his mouth! Definitely dug it this time around. I think we had to dip his paci in the icing last year to calm his screaming. It worked. But, he wasn't even close to eating anything that wasn't pureed, so that was the extent of it.


So, all in all, it went well. Not as grand as I was imagining, but special and memorable nonetheless. He'll only turn two once and we did everything in our power to embrace and capture it.

60 Minutes, CURE, and epilepsy

This post was taken from a fellow IS parent/blogger. I'm only copying and pasting from the letter he received from CURE. You can read his entire post here.




We have some great news to share--on Sunday, October 25, 60 Minutes will feature an in-depth examination with Katie Couric of the problems and challenges of epilepsy. The segment will feature CURE and CURE founder, Susan Axelrod and her family.

CURE supporters around the country will be gathering at "viewing parties" for this program and we hope you'll join them by settling in front of your TV to watch. (If you'd like to host your own party, please call 800.765.7118.)

This is yet one more opportunity for all of us to raise awareness in this amazing year for epilepsy! Beginning with PARADE Magazine in February, we've enjoyed tremendous exposure in Newsweek and on CNN, MSNBC, the TODAY Show and Oprah's Dr. Oz radio show.

It's clear that momentum is on our side...this is our time to change the playing field and finally begin to make the difference we've been waiting for, for far too long.

Please help spread the word about 60 Minutes and make sure the voices of the over three million Americans suffering from epilepsy are heard loud and clear.

Warm Regards,

Michelle



I'll be watching. Hope you will be too.

this

This is what keeps me pushing through. Because beneath the medication, I sometimes see this side of him. And it reminds me that this is the way he should be.

By the way, I cannot figure out why all my photos are coming out orange-ish. There's no telling what I've done to my camera!

seizures and all

I will be so glad when this blog is less focused on seizures and developmental delay talk, and more focused on developmental strides...but, until then...





The usual updates...





We are OFF Felbatol. Finally. I was hoping to see more of the real Austin peeking back out by now, but not quite yet. The upside has definitely been the reduction of those nasty side effects. He's eating MUCH better again, sleeping pretty well, and even "going" more.





Still waiting on that playful side with the laughter and curiosity to increase. He IS better, but not where he was pre-Felbatol.





I'm just praying it's still effects from the med rather than the hyps being back. I don't typically want to have EEGs at our epi visits, but this time is different. We have an appointment on the 30th but no EEG. It would be nice to know for sure. It's a strong possibility that it is back, seeing as the clusters are still going strong.





The last time I mentioned his seizures, I talked about a 70% reduction. They've picked back up again since then, but it hasn't deterred my faith. I'm still holding on to the prospect of seizure freedom. Med or no med, surgery or no surgery. It WILL happen.





So, I thought I would avoid this, but it feels weird just writing in standard update mode. I haven't gotten into anything more than just daily happenings and so forth. Problem is, I used to write about how horrible this felt and my struggles to live it and accept it. It was my passion. Trying to cope. I would pour my anger and my broken heart out here in hopes of gaining new prospective or just needing a release from the collection of emotions. But, now that I have reached this new path, I've left that behind. Now, I'm left with the struggle to write about something I cannot explain. I can't. So, for now, until I can explain this new passion, I will most likely keep to the standard updates. That also explains my lack of regular posting, by the way.





But, I will say, seizures and all...We are doing better than ever. Weird, huh? :)











Had to share this...





Someone fell asleep in the high chair yesterday! Craziest thing, he feel asleep mid-chew! One minute he's chomping away, the next...out like a light! He was tired and hungry...guess what won? :)

This one's for Trevy

I read a little more than a handful of blogs. All by people I've connected with throughout this journey with Austin. Most of you understand this connection.

It starts by a common ground. Seizures. Monster seizures. Infantile spasm seizures. An automatic bond forms. Because we all truly know. We get it. But, sometimes that bond continues to strengthen. We see each other through mad seizure days. We celebrate new skills and triumphs. We give advice and compare notes. And console each other and try to give a boost when living with seizures seems unbearable. It's all of these things that keep us connected.

I've been following this one, Dear Trevor, for about a year now. I could give you a background story, but his mommy tells it much better than I ever could. Through her writing you can actually see her heart.

And right now...my heart is exploding for them. Trevy (as she likes to call him) is in Detroit as I type. He had a PET scan today. For his brain surgery this week.

Tomorrow it starts. The grid placement. An invasive and more precise way to monitor the seizure activity. Then on Friday, October 9th, the resection begins. A subtotal hemispherectomy. Which we pray will leave this little boy seizure free!

Please remember this family this week. Say a prayer (or a hundred) for them.

Sabril/vigabatrin

Saw the link to this Forbes article in the IS forum. Interesting read about how the only infantile spasm approved drug made it's way to FDA approval.


A Long And Deadly Wait
Matthew Herper, 09.30.09, 06:00 AM EDT
Sabril could help babies with brain-destroying seizures. So why did it take so long to approve?



Timothy Zirkel will never forget the seizures that assaulted his 4-month-old son, Jake. "You could see the pain in his body as it happened," says Zirkel. "I just remember always wanting to trade places with him."

Every seizure was damaging Jake's brain. Infantile spasms, a rare form of epilepsy, strike 2,500 babies in the U.S. every year. Unless the seizures are stopped early, permanent neurological problems result. These children may never walk or talk. Some have IQs of less than 50.

After a first treatment failed, Jake was helped by an experimental medicine called Sabril that carried the risk of destroying his peripheral vision.

It was "a no brainer" to take the chance, says Zirkel. "Within the first day of taking it, his seizures stopped and they have never come back." That was in 2005.

The drug had languished since 1998 when its original maker abandoned it because of the vision side effects. A tiny biotech, Ovation Pharmaceuticals, picked it up in 2003, and fought for six years to get it approved. Its path to patients was the longest of any medicine on record--14 years.

Sabril warrants close attention because it's a clear near-miss for the drug approval system, a case where a medicine with a clear benefit for desperate patients foundered. It's pretty clear that new conflict of interest rules and policies about drug safety contributed to the delay. A small potential market--sales are expected to peak at $300 million--also played a role.

Unlike the controversy over, say, the Dendreon cancer treatment Provenge, there have been few protests and little noise made about the delay. Even now, Ovation's parent company, Lundbeck, will probably make more from selling Sabril to adult epileptics than to babies. Figuring out how to help small groups of people who desperately need a drug without exposing the population at large to necessary risks may be the biggest challenge facing the FDA.

In 1994, Marion Merrill Dow, now part of Sanofi-Aventis ( SNY - news - people ), filed a new drug application for the drug as a treatment for all kinds of epilepsy. In November 1997, the FDA asked for more information about the drug's efficacy. A month later, the first reports emerged that patients in Europe were losing their peripheral vision. Forty percent of the patients who take Sabril have this side effect. In October 1998, the FDA rejected the drug.

That would have been that had it not been for Donald Shields, director of the pediatric epilepsy program at UCLA. In 1996, Shields and his colleague Roy Elterman had started a study of Sabril in infantile spasms. Even after the company backed out, they kept enrolling babies in the study until their supply of the medicine expired, eventually enrolling 200.

They published their results in the journal Neurology in 2001. Patients who were given a high dose of Sabril were three times more likely to have their seizures stop than those who received a low dose. (Because the patients needed treatment, all got at least a low dose of the drug.)

"It's the kind of drug we have to have," says Shields. "It's got its problems, but for the kind of patients we're talking about, it is a godsend."

At a meeting of the Child Neurology Society in Vancouver, Shields saw a booth for a new start-up, Ovation Pharmaceuticals, which was seeking new products. He sold them on Sabril. The FDA had never closed the file on the drug, and in December 2007, Shields' data formed the basis of a new drug application for infantile spasms.

The FDA gave the drug "priority review," which means a decision was due in six months. But from the outset, the agency said it would need extra time to convene a panel of experts to weigh Sabril's merits. Experts in infantile spasms were few and far between.

Then new regulations slowed things down even more. The FDA was facing enormous pressure following controversies like the withdrawal of Merck's ( MRK - news - people ) painkiller Vioxx, linked to heart attacks, and alleged overuse of anti-psychotic drugs like Zyprexa from Eli Lilly ( LLY - news - people ) and Seroquel from AstraZeneca ( AZN - news - people ). New conflict of interest rules led it to cancel a July 2008 panel for Sabril because one key expert no longer qualified.

The FDA finally convened its panel in January 2009, and the panelists voted unanimously that Sabril should be approved both for babies with infantile spasms and for adults who had run out of options. In February, Lundbeck, a Danish drug maker, bought Ovation for $900 million. The press release announcing the deal trumpeted that Sabril was in the final stages of FDA review.

But Sabril needed a Risk Evaluation and Mitigation System (REMS), FDA jargon for a plan that ensures drugs are only used when benefits outweigh risks. One division was uncomfortable with the measurements on the dosing syringe in which the drug was given, and even after the review seemed close to done, a team of lawyers had to go over it. Sabril was finally approved in August.

Shields "whooped" when the approval came through. On the length of the delay, he says only, "The FDA and I have very different jobs."

"I would rather have a blind child who is not suffering neurological damage than the reverse," says Tim Zirkel. He asks himself how many kids have suffered as the drug made its way to the market. Kids whose seizures are stopped early enough are normal developmentally. Jake Zirkel is not quite that lucky. He walks and says a few words, but doesn't talk as much as a normal 4-year-old.

"My son is the most amazing child," Zirkel says. "He is my biggest hero. He has gone through more in the past four years than I ever will."

Welcome to October

Looks like October will prove to be a big month for us.

We will celebrate Austin's second birthday...And, I'm thinking...we might just get our first Halloween costume too. You'd think it was a given. With Austin's birthday falling to close to Halloween, that he would have already been dressed up. I've never been big on Halloween -haven't donned a costume myself since the 8th grade (not saying how long in years that's been! lol). I soooo did not want him to be the Halloween baby. That's why I gladly took an induction date of the 25th rather than risk letting him arrive on the 31st. Silly, I know. Anyway, I've gotten him some themed clothes the last two years, but never a costume.

My rambling just got me little off track. So, October, right?

We're not the only ones having an eventful month. This month will also be extremely significant for our friend, Trevor, too. He's leaving tomorrow for Detroit in hopes of brain surgery being his chance at seizure freedom. Of course, this little one will get his very own post soon. I've grown too attached to him and his family to cram this in with a typical update!

Anyway, I'll close with a bit of encouragement in Austin news...

Two weeks ago (yeah, a tad bit late on this), Austin starting semi-spoon feeding himself! This photo was taken during that very meal (I didn't realize how dark it was until I uploaded it -my photo editing program won't let me edit!). I have a video too, but I was hooping and hollering like a loon in the background -thought I better not add that one! This is significant progress for him. Unfortunately, very soon after, his appetite started diminishing & he started refusing to take bites -much less do it himself. It's finally starting to improve a bit, so we'll get back to the spoon ASAP! By the way, when I say semi, I mean that he will do it after I put the food on the spoon and lay it down. He's not quite scooping yet. He'll get there though. No doubt about it. He's already surpassed so many expectations!

Gonna get there soon

First with the updates. Then with the story.


We have reached the Felbatol end. A two week wean. Thank goodness! I have neglected to mention all the different aspects this one has affected.

Appetite.
Mood.
Sleep.
Interaction.
And most dramatic effect. Regularity. Yep, this boy has had SO much trouble "going".

His seizure presentation has changed as well, but I'm doubting it is the med. It may just be that they are evolving and changing. More on that later.

We have decided against taking him off Zonegran since that has been the only questionable one as far as improvement goes. No, it's not making him seizure free and never has. But, if it improves them, I'll take that for now. I will not allow him to reach his previous dose of 300mg a day. We just increased it to 100mg a day from 50mg. I don't see the need in maxing it out as he was just on this dose and there was no difference between it and 100mg. The side effects were the only visible difference.

We are discussing the addition of Lamictal in the near future. After the Felbatol wean of course. No more big changes at once.

And, I'm glad to report that Sunday, we saw a 70% reduction in seizures.

Now with the story...

Several weeks ago a series of events led me to a renewed faith. I will get into the details another time, but I am different. I am peaceful. Hopeful. And excited.

Yes, I received a particularly tough blow last week with the EEG/surgery news. But, oddly enough, I'm okay.

Since Friday, I have not been angry. Or bitter. Or hopeless. Again, oddly, since I received that "tough blow" on Thursday. And this was before the reduction in seizures.

I'm no longer praying for acceptance of this disorder and of seizures.

I'm now praying for a Healing. And I've never been more accepting of this situation.

I've never in my life seen so many seemingly unrelated events point to one particular thing.

I'm not letting go of this.

And over the weekend, Saturday to be exact, a close friend of my parents came over in honor of Austin and our faith that he will be healed. He laid hands on him and prayed.

Sunday was the day of the 70% reduction in seizures.

It may not be immediate. It may not stop all at once. But, it will eventually. I have peace in that.

I've spent many months praying for surgery. Or that this or that med will be the one. I've prayed for acceptance if this is to be our life. But, not once did I truly, whole-heartedly believe he could be healed without that.

But, I do now.

The Hunt

I originally planned a lengthy update for today. The first day time and errands would allow.

I also have a few choice comments on the Questcor issues as well. But that will have to wait.

Between the internet and Austin mood and seizure interruptions, I have been quietly dealing with another issue.

Surgery.

There are very few people I've mentioned this to, simply because I was afraid of the response I would get in the end. I had to hide my vulnerability to this subject.

It took over a month. I emailed Dr. Chugani about Austin's most recent hyps-free EEG (he told me during our visit in March to let him know if there are any changes with his EEGs -notably the hypsarrythmia).

I had the EEG report sent in early August. It took our local hospital exactly one month to fax a paper copy of the report.

During the spotty internet service, I was a wreck knowing that Detroit had received the report and I could not get into my email inbox.

This morning I had this email waiting for me...

Hi; the EEG does not really show any lateralization to either side, but remains diffuse all over the brain. I don't think I can make a case for surgery. However, as Austin evolves out of the spasms into some other seizure types, there are other meds that can be used. Just because a particular med did not work for spasms does not mean it would not work for other seizure types. So keep your hopes up! Are we having lots of seizures now? HC



I felt my heart shatter. We are nearing our Felbatol end (I hope). It is our eighth AED. EIGHTH. Somehow our parting in Detroit in March left me with slivers of hope. He explained how unclear the evidence was (particularly because of the EEG loaded with hyps), but that doors could be opened in a matter of months -when the hyps clear. Which they have. Which did not even open the door a smidgen. Instead it slammed in my face.

I did respond to that email. Told him about the seizures and the behavior that accompanies them. And asked the very stupid question that I already knew, but had to get confirmation from the guru himself. Should we give up on the possibility of surgery in the future?

A very simple and matter of fact I would not pursue surgery. HC was his response.

So there it is. My secret hopes of new developments making a difference rejected.

My heart is torn in different directions. I don't want surgery to be the answer. I don't. I don't want an AED with unreasonable side effects to be it either. I want the Miracle. The Healing. So, in that respect I'm okay. But, the logistical side is crushed. It sees nothing more than the bottom of the barrel.

This struggle comes at a particularly bad time too. Austin's clusters and seizure-related behaviors are at an all time high. Saving the details for later, I will only say that I was desperately yearning for a new option -or even a new hope for a new option this week.

It's not over. Sadly, the surgery hunt is (for a while until something new suggests otherwise in the future), but the miracle hunt is just beginning.

Alive and well

I just wanted to let everyone know that we're okay, and unfortunately not on vacation...I haven't been not blogging by choice. I've been battling an insane internet service provider and their errors and ignorance! Internet has been down, and instead of choosing the passive aggressive route to get it reconnected, I probed and pestered until they had no choice but to fix their mistake (yay me!). They should be on speed dial by now as many phone calls as I've put in. :)

Recapping will be quite the chore...I'm still thinking on how I will update in a somewhat organized manner. Undoubtedly I will leave a lot out. But, I'll get to it soon! Promise.