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.
Friday, February 19, 2010
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...
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...
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...
Friday, November 13, 2009
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
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
Monday, October 26, 2009
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.
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.
Friday, October 16, 2009
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.
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.
Wednesday, October 14, 2009
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!
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!
Monday, October 12, 2009
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? :)
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? :)
Monday, October 5, 2009
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.
Friday, October 2, 2009
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."
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."
Thursday, October 1, 2009
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!
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