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

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.

















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.

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!

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? :)


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."

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!



Tuesday, September 29, 2009

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.

Thursday, September 24, 2009

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.

Monday, September 21, 2009

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.

Friday, September 4, 2009

people pleaser (unfiltered)

I've noticed that my attitude needs some serious adjustment. My words have been twisted by sarcasm and pessimism lately. I'm sorry.

I know, I know, I'm entitled to vent occasionally. And be angry and cry sometimes even. But, seriously, my blog has definitely been reeking of negativity that just leaves me wanting to wash this bad taste out of my mouth.

I've spent more time than not being bitter over the past couple weeks. Not healthy. And certainly not helpful. To me or anyone else that may be reading.

I complain about the doctors and nurses that get snippy with me. But, I'm not snipping back the way I should. To them. I'm snippy behind the scenes. Yes, they deserve a good verbal lashing from time to time. But, I keep writing them off as jerks and go on to bitch and moan here. No one reading here to check in on Austin wants to listen to my soap box every single time I have a confrontation with a health care provider!

I'm honestly ashamed of how much energy I've wasted on negativity. All it does it interfere with the positive energy I should be directing at Austin.

So, take this as an attempt to clean up my act and prioritize my concerns. Which are undoubtedly Austin, his seizures, and our determination to keep fighting for him.

One last thing though...before I completely try wash myself clean of the sarcasm. I feel the urge to go out of Negativeville with a bang.

The last few convos I've had with our providers has stirred up some issues that I need to address. I'm not the quick-talking, assertive type I aspire to be. I rarely say exactly what's on my mind (even if it actually comes to me before the end of the conversation) out of fear of hurt feelings, drama, or me looking callous or ignorant. I'm a people pleaser and it's obviously damaging to my inner strength. But I'm gonna get it out now!!!!!! Yep, I'm hiding behind my blog.

Here are some (possibly taboo) scenarios I've encountered along this journey and my delayed responses...

Warning...the people pleaser in me will be in OFF mode.

My simple requests:

For the clueless parent that feels so inclined to rub salt in my wound with his/her child's brilliance:

I hope that someday I will have accepted this life and be content with it. I hope that someday I will not care how others perceive my life or my son’s. Right now, though, the pain is still very fresh. I am emotionally fragile to the outside world of bystanders peering through the windows of my world. Same goes for me peering in to see your world. I am happy for you and your beautiful, healthy, typical family. I am. But, please know that I may not do the happy dance with you as you boast at how your little Bobby is progressing at the speed of lightening. Sorry, but it is crushingly painful for me. Because it is a reminder. There are always reminders. I’m just overly sensitive that way. Forgive me, but I was presented with that very dream only to see it ripped up and possibly tossed away. Respect that in my own time, I will come to grips with my reality and someday rejoice in your fulfilled life and genius babies. Right now, I’m still picking up my own pieces. I do not wish to play the martyr, but respect my situation, please.

For the gawkers that love to display their disapproval at my parenting skills:

Don't be so quick to pass judgment on me and the decisions I've made. Yes, my almost two year old still sucks a newborn Soothie paci. What's more he still takes a milk bottle too. I understand that this is a no-no and I'm not trying to deliberately baby my son forever. But, please keep in mind that there may be special circumstances. Not all of these babies still on bottles and pacis are spoiled. Some of them have been through more than kids their age should ever have to endure. If they are comforted in the slightest by their bottles and pacis, so be it. They shall have them. Others lack the developmental skills to drink from a cup or a straw. No more explanations needed.

For the grumpy parents who like to complain about their children annoying them:

Maybe you need a clue (see clueless parents), or maybe you do this as an attempt to downplay your life of normalcy to me. Don't. Complaining about how you'll snap if you hear the word, mama, one more time will not make me feel better that my son won't/can't say it. It's only makes me angry that you are not more grateful for your typical and chatty child. Say you're 100 lbs and I'm 400 lbs...Would you complain about your weight to me? Doubtful. Or if I had the flu and you had cancer...Would it baffle you as to why I would be complaining to you? Probably.

For the ones who remind me how much worse off we could be:

I'm fully aware of this. You don't have to remind me. I remind myself everyday. But, that doesn't make this situation any less painful. I do thank God that he doesn't have a fatal disease and that he can sit up and walk and see and hear. Yes, I am thankful. But, I still pray that he will someday wrap his arms around my neck and tell me he loves me.

For everyone who has minimized his disorder by saying he'll just one day grow out of it:

That would be a dream come true. But, have you noticed it has already taken it's toll? Maybe he will grow out of it. But, do you honestly think he will magically just catch up to speed overnight? Regain everything he's lost and fast forward to where he should be without any problem? Would that mean he is going through any less right now? Not later...NOW. Growing out of it doesn't take away the fact that he suffers from over 100 head dropping, sometimes body dropping, seizures a day NOW.

For those of you feel awkward around me and my son because he's not a typical toddler:

Don't. He's still a happy, energetic, lovable sweetheart! He may not participate in pat-a-cake or peek-a-boo with you. He may not laugh at a funny face or sound you make. But, he has his own personality and you are the one missing out if you don't see it. Or at least try to get to know him.

For those of you that always sweat the small stuff:

It’s really amazing, thinking back, at how shallow and superficial my life was before. I focused on having the perfect life and vowed to accept nothing less. My prayers consisted of selfish desires. The perfect dream house and that perfect job with top notch pay. Now, I'd just like to tackle that stack of medical bills. Perfect truly has a new meaning. Now it’s as simple as having a seizure free child that throws age appropriate temper tantrums that protests he will only eat cookies for dinner. Perfect means no neurologist visits, or spinal taps, or routine EEGs and MRIs. No seizure meds that reduce cognition and alertness. Perfect would be hearing MOMMY! to high heaven and finding Austin-height scribbles on my semi-freshly painted walls. Perfect would include toy trucks in the toilet next to a blushing toddler. What might have been a crisis before would suit me just fine now.




So, while I realize I may have surprised some of you, lost a little respect, or maybe even lost some readers, I needed to make these thoughts known. I'm learning that speaking my mind does not always include getting approval. The people pleaser is cringing right now and wanting to post a disclaimer so as to not offend anyone. But, the big mouth in me (that a lot of you know too well) is cheering!!!

Now...

Positive Holli from now on (unless a run in with you-know-who warrants otherwise)...

By the way...

For those of you have graciously and patiently listened to me and offered up comforting advice...or joined in and griped with me:

Thank you! I love you dearly! :)




Okay, so it's only been a few hours since I published this post. And...I caved to that nagging thought from the people pleaser. Request #1 is not sarcastic. I truly am happy for anyone and everyone who has a healthy, disorder-free child. I would never...ever...ever wish this on anyone. And I would never ever imply that my precious boy does make me over the moon happy. I cherish him down to the very last drop. I am just not content with what has happened to him.

It's now after 10:30 pm here. There goes that thought again. Nag. Nag. Nag. You know, the one where I was struggling with myself over whether or not to post a disclaimer? It won. Again. This is not directed at ANY of my readers (that I'm aware of). It's a bunch of randomness that I've encountered over the past year. It's doubtful that anyone who really should be reading it will. It's just all the things I wish I would have said when I had the chance. Like for the people that gave me the dreadful stares while I gave my overweight baby a bottle in the doctor's office (while he was a balloon on ACTH). I felt like I was being mentally name-called by some of the gawd-awful looks I got. LIke, you really could stand to cut back a little, lady.. Or, to the woman in the mall that said my son looked too old for a pacifier.

And, one more thing. I'm not offended by everyone who says that Austin will grow out of it. Some of you truly believe that. I wish I did too. Some of you know that regardless, this is still a serious disorder. But, I have honestly and truthfully had some people say, Oh, he'll grow out of it. Nine times out of ten they do. He'll be fine. Like they don't understand why it bothers me so much. I mean, it's not like he's having grand mals or anything. If they only knew. There's a reason infantile spasms are referred to as the catastrosphic epilepsy disorder. Just because they are small in appearance does not mean that they are affecting him any less than if he were thrashing about on the floor.

Okay, I'm developing a case of what Ken would call verbal diarrhea. Need to stop now.

Wednesday, September 2, 2009

to the point

I've been mulling over some different subjects lately. Not sure how I want to approach them. So, until I do, I thought it better to post some sort of update rather than nothing. Even if it is generic and right to the point. Here goes.








We still see clusters. Decrease/Increase? Not sure. Some days are better...some not so much. One improvement is drop seizures. Whether they were atonics all along, who knows, but whatever they were/are, they are very seldom seen. I'd say confidently 90% of his seizures are infantile spasms and occurring in clusters. The other 10% are coming in singles, and the majority of the time it is VERY much like a spasm. A sharp jerk. Startle looking. Know-it-all nurse told me a couple weeks ago it sounded like atonics (because she said a drop is always an atonic) with generalized features. Honestly, our little conversations got my head spinning so much, I gave up on it for now. I know what I see. I've seen spasms for over a year now. These look very much like spasms. I'd like to think she is clueless to boost my confidence a little. But, then again, I'm not an epilepsy clinic nurse either. So I put it to rest with the notion that maybe more observation will tell. So far, I'm still thinking spasms.





Anyway, we reached our treatable dose on Felbatol (2mls 3x daily) last Tuesday. Today we increased to 2.5mls 3x daily. Still waiting to see where this one takes us.





To seizure freedom I hope!




Wednesday, August 26, 2009

Do you...

Pray?





Or are you the fingers and toes crossing type? Doesn't matter, really. I know a little boy and his family that could use either or...





All my IS friends reading know exactly who I'm referring to...





One of THE cutest, most adorable kids on the IS block. Bennett.




He's scheduled for a temporal lobectomy tomorrow, Aug. 27th. And, it's not cut and dry. There's more to it than just a surgical resection. Not that a surgical resection is ever just a simple surgery. When you're talking matters of the brain...Nothing is simple. But, he has a unique case. And it's scary beyond description for his family.



Not only does little Bennett need our prayers and support...But his mommy and daddy, too. They need all the strength, encouragement, and comfort right now to be solid for their brave little guy.



So, if you could designate some fingers and toes for crossing...or remember him and his family while saying a prayer...

Every little bit helps!

Sunday, August 23, 2009

Pardon me...

I must be the crazy one!



I think the exhaustion is clouding my judgement.







Because if...IF I were in my right mind...





I would not have attempted a mall visit on the last weekend before school starts!



Not to mention TX tax free weekend at that!!



Can you imagine the craziness?!!



Even the toddler section at TCP was crawling with bargain hunters!



Much MUCH fun, I tell you. Much fun. But, leave it to procrastinator-me to wait until the day before our nephew's 1st birthday party to get a gift. I like getting clothes for 1st birthdays...it's like the last time you can get them clothes for an occasion without getting that sad look of disappointment!







Oh, and by the way...there is an upside to the Felbatol although you'd never know it by reading my previous post.



Between all the fits and nap protesting...I get to see this!






Friday, August 21, 2009

Sleep is for the weak...

Whoever came up with that phrase had serious issues.


Some of you might have stumbled upon my desperate plea for help on the IS board. Some of you reading may have heard me on the phone. Or had the pleasure (not) of witnessing it firsthand.



THIS BOY IS CRAZY!!!!


Thank you, Felbatol. Thanks a ton.


No, really, I forgot what sleep deprivation was like. I needed a reminder.



All joking aside. This boy does not want to sleep anymore. I have no choice but to blame, you got it, Felbatol.

My trusty standbys and old sleep tactics were no match for Austin and Felbatol last night.

While Chad was waking at 4:30 am to start his day...

I had just ended my previous one.

I've long suspected that he was programmed with some type of sensor that alerts him when I'm drifting off to sleep. He can be as still as the night, but as soon as my eyelids start getting heavy and the groggy state sets in...the stirs and squeals begin.

Case in point...last night.


My poor little restless boy. I had one of those breaking moments around 2 am. That nasty anger brewing that results from a weary mommy on the brink of a meltdown. Not angry at Austin. No way. Sad for Austin. Angry at life in general. The kind of moment that reminds me of what we are living. A life where I am so desperate for seizure relief that I have subjected my baby to this hell. Felbatol.

A vivid reminder of the no nap/no sleep days of ACTH.

Counting down...Three and a half days until we reach our so-called treatable dose. Then maybe another week or two after that to know whether or not this could possibly be beneficial for Austin.

Something's gotta give here! Either these side effects must subside...or we've got...I mean GOT to find a remedy.

I did get a good suggestion (thanks, Elaine). It's called Neurontin. I read up on it. Not a technical sleep aid, but typically does the trick. It's got dozens of uses (most being off-label uses). It can be prescribed for anything from the treatment of seizures, to bipolar disorder, to treatment for withdrawal symptoms.

Of course, I don't want Austin on any more meds than necessary. So, I will keep up my sad attempt of getting him settled the old fashion way for now. For now being the key words here. Too many days of this can't be healthy for either of us.

Coasting on fumes here!

Hoping...hoping...that these are the type of side effects that disappear or lessen over time.

He's not just not sleeping. He's gets in a slightly agitated state. He's biting his fists with ferocity again. The callous that was finally improving is constantly red again and spotted with baby teeth marks. He's been moaning and crying at times. For those of you that really know Austin, you know he's always been a go with the flow, laid back kid -except, of course, those newborn days . For the past year or so, he's rarely been the type to cry without an obvious cause. Not so now. This is not the baby I've grown accustomed to. My days of swaddling and shushing and rocking have been gone for over a year now. All of my old previous tricks are being squashed now. DOA.

Maybe if he doesn't adjust to the meds...I'm hoping I will soon. Re-adjust to our new sleep schedule (or lack of). I lived through life with a newborn. Lived through ACTH. Vigabatrin. I just need a refresher I guess.

Wednesday, August 19, 2009

Too SWEET!!!




Sweet is the word!




A basket full of yummy sweets came to my door at 5 pm.




Seems my dear sweet Mommy and sister thought it may cheer me up a bit after my insanely frantic day yesterday...



They were right!




Bless y'all!! Love you both!! And thanks a bunch! You know I'm a sucker for anything sweet!









tornadoes and seizures?

Did any of you happen to watch The Weather Channel yesterday? Man...our neighbors in Beaumont had a little excitement. An F2 ( I think, might have been a strong F1) tornado blew through some of the largest retailers in town (right before the big TX tax free weekend for school shopping)...the mall, Wal Mart, and Kohls. I tell ya, if it's not a hurricane it's something else. They were determined to make the news again this summer! No one was seriously hurt though, thank goodness. Even the woman that was in her car when an SUV landed upside down on top it. Not injured, just a little in shock.

Completely unaware, and smack dab in the middle of fixing Austin's lunch, I got a call from my mom who'd heard that there was a funnel cloud just a few miles from MY house!! There's no type of weather I fear more than tornadoes. And our house...not exactly tornado ready. I ended up piling a mattress, pillows, Austin's helmet and my cell phone in the bathroom...you know..just in case! Can't you just see us all (me, Austin, and the Bailey) all camped out in the bathtub?!!

That certainly didn't come at the best time, although it's not like it was planned. Seizures were the priority of my day. Back up again. Way up from the weekend.

Without getting into too much detail, I concluded from the phone conversation with the epi nurse, that they think I'm a total nutcase. She said there was noooo way that the Felbatol could be causing the increase in seizures. According to them, it was too soon to see this type of effect. I asked her if it was a coincidence that they got dramatically worse the day after the increase...and if it was a coincidence that they got dramatically better the day after the decrease.

Oh, well, what would I know? I'm just his mother. The only person who sees him all day everyday. I guess she would know more since she sits here and counts seizures with me and knows everything about him and seizure meds for that matter. Her having her MD and all.

Not really. But, seriously, I still don't understand why I was under attack for adjusting his meds. I told them in a message something needed to be done. They didn't bother to call me. For four days. A five minute phone call was all it would have took. She pointed the finger at me for disrupting the increase schedule.

I could be wrong, but it seems like I might have mentioned wanting to avoid this type of confusion. It's exactly what I feared would happen if we went adjusting more than one med at a time. Guess my mommy's instinct should be obeyed from now on.

Anyway, thanks everyone for the support. I never feel comfortable adjusting his meds on my own, and to know that I'm not the only one who would have done that restores my confidence a bit.

Tuesday, August 18, 2009

Why no update?

Because I have STILL yet to hear back from the epi. Believe it or not.

It's been more like a circus ring with clowns jumping through hoops than anything else.

Quite the disaster. There's no explaining it. No making sense of it. They are nuts. Plain and simple.

By Thursday's end, I was desperate for some sort of relief for Austin. Since no one else seemed to give a flip, I adjusted his Felbatol myself (after much debate and a heads up message to the epi clinic). We had just increased on Wednesday so I brought it back down to that dose of 1 ml. And, whatdaya know...he improved. I would never ever typically adjust his meds on my own. Buuut....since no one would return my frantic calls...and he had just been on that dose one day prior...I did it. And it's okay. Better even.

Sadly, I have still not received any further instructions. It would be so nice to be able to discuss this with our epi and feel like I'm getting genuine feedback. That has so not been the case. They are too busy for us. Too busy for Austin.

And that infuriates me to no end!!!

It's a shame. Really is. I've called over and over. My child was seizing like crazy. Now I'm stuck with a med that I suspect is worsening his seizures...and they won't CALL ME BACK!!!


***********************************************************************************

Update:

I finally received a call back from the epi clinic. According to the epi, the increase in seizures was most likely due to the decrease in zonisamide rather than the increase in Felbatol. After much discussion with the epi nurse, I agreed to restart the zonisamide (his last dose was Sunday night) and keep with the Felbatol increase until he reaches the treatable dose of 2 ml 3x daily. I'm hestitant, of course, because I am leary of the Felbatol. I have only seen negative effects since we started. However, we were adjusting the zonisamide at the same time. Time will tell I suppose. I have to try something. Maybe this will help determine which is responsible -if either. Like I've said many times before, Austin's seizures tend to go up and down regardless of med adjustments.

Thursday, August 13, 2009

Lost it

Where do I begin???

As if the anticipation and prep work weren't enough for this week (and the therapy in half an hour followed by a trip to the lab), I'm frazzled beyond words right now.

Last night I lost it. Lost my patience in med trialing/weaning, lost my cool exterior, lost my friggin' mind!!

After a loooong nap (which I would expect to see a few clusters), Austin proceeded to have nearly 8 clusters in a span of six hours. One right after another. Between 8 & 10 pm he had four. What gives?

What's more...that smiley, glowing boy is gradually fading again. Sometimes turning away from me and avoiding us. Walking around aimlessly. Falling again. Gnawing on his fist again. Irritated. Whiny.

Let me add even more to that. The real zinger.

I have absolutely NO clue what the heck is going on!!! Or even what kinds of seizures he's having for that matter!

I've been exploring the possibility that Austin may not even be having atonics. At least not right now. Long and confusing story...but, bottom line, he's jerking his arm up with the seizures I've always thought to be atonics. Atonics, by description of our epi, should not include a movement like this. It looks to me like a spasm (myoclonic). Maybe they were all along, just not with strong intensity?

I feel like we're back where we were exactly a year ago. Only with 100 more seizures a day. August 13, 2008. The last injection of ACTH. Exactly three months into this hell. Times were so confusing then, but slightly looking up and I swore I was seeing the light at the end of the previously pitch dark tunnel. The ACTH wean was finally over and Austin was having less than 20 seizures a day. On maybe 50mg of Zonegran (but with intentions of going up). Exactly what he's on now (with the intention of going down). Only now it's accompanied by two others -Felbatol and Klonopin. Those were the best seizure days he's had since this all began. And the seizures were not occurring in clusters. I was just starting to suspect that they were atonics. Today? I'm suspecting that they may not be. Ironic, isn't it?

I find it so incredibly strange that we are in this position today.

Plus, that old gut feeling is coming back to haunt me. The one I had when the discussion of adding Felbatol arose. Somehow I knew we would find ourselves questioning everything again.

And, here we are. Clueless. Was Zonegran really helping? Is Felbatol making it worse? Are the hyps back? Are we losing him to this Felbatol? The one that's supposed to be making our lives better?

I only hope I am able to form actual, complete & coherent sentences when we get our call back. At least enough to get my point across!

I'll try to update if I get the chance before we leave...providing I hear something back before then!

Tuesday, August 11, 2009

Time for some firsts

We've made the trip up to the lake several times this summer...but always minus Austin. The summer heat has just been too much for him to handle with his previous dosages of zonisamide (one of the many side effects is decrease in sweat production and high risk of heat stroke). Until just recently, he could stay outside in our intense SE Texas sun for a maximum of 20 minutes at a time -maybe, providing he has a cool wash cloth, fans, and plenty of ice water. Our temps here are a bit much for the average person, much less a toddler who's on a med that can cause heat complications. Very little warnings to even know when he's getting overheated. No sweat and he's non-verbal. His skin would get warm to the touch and his little face would get flush. Other than that...no clue as to how he's tolerating the heat. Which is obviously dangerous.


But, fortunately, the baby sweat is picking up these days thanks to our steady decreasing of the med.

So...

To the lake we will go...with Austin in tow this time!

All the firsts this weekend has in store! His first trip to the lake, his first boat ride, the first full-size pool experience, first real getaway with the family (that doesn't include running from a hurricane or hospitals).

And talk about impeccable timing. The recent decrease in his meds mean an increase in his alertness. And curiosity. And interaction. And happy giggles not just seizure giggles (yes, he sometimes smiles and laughs between seizures -it's beyond me why he does this).

It happens to be coincidental that all this is occurring at the same time. We made reservations months ago...well before we knew of this med schedule.

So, I may not be blogging much, if any, until next week. The rest of this week is packed full with therapies, labs, chores, and of course the preparations for the big weekend. My only regret is that it's not all week! To get away from typical day to day life for a week would do us all justice!




Is it just me, or do you almost feel relaxed just by looking at these pictures?!

Oh, another first...the slide!

Monday, August 10, 2009

Med update

Our first morning in over a year where zonisamide (Zonegran) wasn't a part of the medicine mix.
That was definitely different! I'm so used to the routine where the applesauce is always present with breakfast. No matter what he's having, it's always been accompanied by a side of applesauce -blueberry, strawberry, mixed berry, or any berry to spice it up...containing our old standby...zonisamide. This morning there was none. Just good ole Cinnamon Roll oatmeal -one of Austin's faves. It felt like I was forgetting something. I even reached for it when I opened the fridge out of habit.

We are one week away from completing the wean. Now, he'll only be receiving 50mg at night until next Monday. We're currently at 1ml of Felbatol three times daily & 0.25mg of clonazepam (Klonopin) twice daily.

There have certainly been some differences, but whether or not it's related to the wean, I don't know for sure. Like I've said before, multiple changes at once throw my judgement off. I see the changes, but I can't pinpoint the reason. The stopping of Depakote, the wean off zonisamide, the addition of Felbatol...and now the improved EEG. Who knows what's responsible for what. I hate that. I thought the medicine changes were spaced far enough apart to be able to clearly assess any notable differences -good or bad. NOT!

Never fails. There seems to always be questions surrounding any difference in Austin. I remember last year when the seizures drastically started increasing. First, I thought it was the late and short dosing of meds (Keppra and zonisamide) and the stress of our hurried hurricane evacuation. Then, we found out he had an eye and ear infection that week. That had to have been it. But, the seizures never decreased. After that, he contracted a bacterial infection from the antibiotics. That was it. Once that cleared up and the seizures didn't, I was clueless. I wanted to point my finger at something. Anything is better than the seizures increasing for no reason. And the idea of pinpointing the culprit (even if I don't know what it is yet), seems much easier than accepting that it's all out my control. If I even think there's a logical explanation, and it's just a matter of finding it, I have more peace of mind. Maybe that's not a rational thought process, but...what can I say? This is not an easy life. We all find have to find our own coping mechanisms. That's one of mine.

I got a little off topic there...sorry! My mind is bouncing all over the place...

Getting back on track, I've been seeing some great new skills trying to emerge. I've mentioned before that Austin figured out how to crawl over pillows and such. Now, he's trying to climb the walls...literally! Or the cabinets, or the sides of his play yard... I got him one of those stuffed fold-out couches last week, and I found him standing on top of it, facing the wall, with his little leg propped up as if he were Spiderman about to make his way up. If you know me, I freaked and ran over there thinking it was only a matter of time before he lost his balance and fell backward! He did. But, not quite fulfilling that elaborate mental picture of mine!

By the way, Step 2 is still going strong. No major boo-boos yet. The day after that post, he started having some spontaneous drop seizures again, which made me a little apprehensive about letting him go again. But, thankfully, he's been sitting again the majority of the time. And, if he doesn't, I can usually spot the changes in his mood which is my cue that something's coming. Crossing my fingers that this continues as long as the seizures do.






Wednesday, August 5, 2009

Article: Single gene mutation responsible for 'catastrophic epilepsy'

A link to the following article was recently posted on my infantile spasms message board.


It's from Children's Neurobiological Solutions Foundation (cnsfoundation.org)


**side notes**

The university that conducted this study was Baylor College of Medicine. That's the same one affiliated with the hospital where Austin receives treatment, Texas Children's Hospital in Houston, TX. Austin has been checked for this gene mutation already, but it's an interesting read for me nonetheless. It gives a little more hope that there is research going on into his disorder...and treatments are being tested.



Single gene mutation responsible for 'catastrophic epilepsy'

July 8, 2009

Source: Baylor College of Medicine

Catastrophic epilepsy characterized by severe muscle spasms, persistent seizures, mental retardation and sometimes autism results from a mutation in a single gene, said Baylor College of Medicine researchers in a report that appears in the current issue of the Journal of Neuroscience.


The BCM department of neurology team replicated the defect in mice, developing a mouse model of the disease that could help researchers figure out effective treatments for and new approaches to curing the disease, said Dr. Jeffrey Noebels, professor of neurology, neuroscience and molecular and human genetics at BCM and director of the Blue Bird Circle Developmental Neurogenetics Laboratory at BCM, where the research was performed.


"While many genes underlying various forms of childhood epilepsy have been identified in the past decade, most cause a disorder of 'pure' seizures," said Noebels. Why some children have a more complicated set of disorders beginning with major motor spasms in infancy followed by cognitive dysfunction and developmental disorders such as autism remained a mystery until the discovery by the BCM team that a mutation in only a single gene explains all four features of catastrophic epilepsy.


A gene known as Aristaless-related homeobox or ARX has a specific mutation called a triplet repeat, which means that a particular genetic (in this case, GCG) is repeated many times in the gene. When the researchers duplicated this particular mutation in specially bred mice, the animals had motor spasm similar to those seen in human infants. Recordings of their brain waves showed that they had several kinds of seizes, included absence epilepsy and general convulsion. They also had learning disabilities and were four times more likely to avoid contact with other mice than their normal counterparts. This behavior is similar to that seen in children with autism or similar disorders in the same spectrum.


"The new model is an essential tool to find a cure for the disorder," said Noebels.


"Mutation of the ARX gene was previously known to affect interneurons, a class of cells that inhibit electrical activity in the brain," said Dr. Maureen Price, the report's lead author and an instructor in neurology at BCM.


When researchers evaluated the brains of the adult mice with the mutated gene, they found that a special class of interneurons had never developed in specific brain regions.


"Further study will allow use to pinpoint which brain region is liked to the autistic-like behavior," said Price.


Two members of the research team Dr. James Frost, professor of neurology at BCM, who developed the concept of the special mouse, and Dr. Richard Hrachovy, also a professor of neurology at BCM are pioneers in the study of human infantile spasms.


"At present there is no proven cure to offer children with this specific epilepsy", said Noebels. "We now have new clues into the mechanism and have already initiated studies with a new class of drugs not previously explored for this disorder." The new drug testing is supported by the private foundation People Against Childhood Epilepsy.

Tuesday, August 4, 2009

Step 2 in full swing!

You may recall a post I made a while back about my new step program for Austin.

We (or I, rather) have been stuck on Step 1 ever since.

But, I'm happy to announce that Step 2 (which consists of giving Austin freedom to roam certain, non-carpeted areas of the house) is now a part of our day! I decided to take that step for several reasons...

1. Austin seems more in tune with his seizures. He's starting to have a pre-seizure/cluster behavior. Aura maybe? Dunno. But, it's definitely becoming more evident to me. What's more, he sits well in advance for some as well. So...I thought maybe he would be okay on the non-carpeted areas.

2. There's no keeping this boy behind make-shift barriers made of pillows and blankets anymore! He will climb a mound nearly his height!!

3. His balance has improved tremendously. He used to take the hardest spills that would leave him crying on carpet. I couldn't imagine him falling on the hard floor...without knee and elbow pads! It's still a bit unsteady...but very much improved.

So, what I've done is added a gate in one hallway and I put his play yard in another doorway that leads into the other living area where the fireplace is. Now, he has free reign over his play room and the kitchen, and I can see him everywhere.

It has made a world of difference. In me. And in him. He gets to see areas of the house from a new prospective...a 2' 10" prospective to be exact!! Instead of from my hip! I do let him walk freely in other areas, but not without me. The gate and play yard barriers create a space for roaming. Just his other area expanded a bit. More to see. More to burn that energy!!

Another change I've made is slowly making some of his toys accessible again. The ones that made me crazy before. Some of the ones made of hard plastic that haven't seen the light of day in months are now a major interest to him. It was like buying new stuff...without spending a penny! Some were either blocked by safety guards (pillows, stuffed animals, or his ballpit was my favorite way to block the bigger ones) or simply put away in his room. Anything hard or tall...forget it. I just kept fearing he'd whack his little noggin from a seizure. But since re-introducing them, I'm happy to say there have been no injuries. I don't really expect there to be either (although one is still driving me nuts -but he is loving it way too much for me to take it away again). His helmet actually gives him ample protection. It's just taken me so long to work up the courage to let it happen.

Friday, July 31, 2009

Scam city

Thought I'd take a quick break from the seizure topics to pass on a warning...



You know those forwarded emails that would typically be deleted upon arrival to your inbox?



The "It happened to me" and "Don't let it happen to you" scam warnings?



Passed around by so many people, who knows if any are true?



Well, I just got off from an extended call with my phone company.









Seems we've been victims of a scam.



LOL...It really did happen to me!!



$299.98 worth of collect calls charged to my phone number.



Ouch!!







This is how it happened...



Three weeks ago today, Chad answered a call from a Houston pay phone. It was a collect call from the Harris County Jail. Curious whether one of our friends or relatives maybe went wild and landed themselves in the slammer, he accepted. The guy on the other end asked him if he knew a Joe Blow (not the actual name he used, but my memory is failing). Point is, he said "no". The guy then told him he would be charged $10 for that phone call unless he called this number and extension and told the phone company he didn't know this Joe Blow guy.



BIG MISTAKE!!!!



He called. And called. And called. Obviously wanting to avoid a $10 charge. He got nothing. Like it wasn't a working number. Anyway, he wrote the ten bucks off and we forgot about it.



That night, as we were watching a movie, our phone did a funny chirpy ring. Then silence.



About 30 minutes later, it did it again. And so on. Til about 11 pm.



Note: We rarely use our land line. We have lovely dial up internet access, so it usually out of commission anyway.



Back to the story. This went on for about a week. The phone would chirp ever so often. Then, I realized that no one had been calling. I tried dialing my home phone number from my cell. It rang on my cell phone end and clicked. As if someone picked up, but there was nothing. But on my land line end, it was dial tone.



Call me crazy, but I let this go on for three weeks. Thinking it was my phone and not my line. I had even put a new phone on my shopping list. It didn't occur to me that it could be my phone line. Internet worked. I could call out on the phone. And, anyone really needing to reach me has my cell number anyway.



So, last night Chad opens our phone bill. Words cannot describe his reaction and I prefer not to repeat what he said! LOL



There was an entire page worth of collect phone calls from Houston. Thirty-seven to be exact. $299.98 worth of charges.



It slowly started to make sense. The last number that registered on our caller ID was the pay phone number. On 7/10. The night our phone started chirping was 7/10. The charges started on 7/10.



Turns out, when Chad dialed that number to rid the $10 charge, he actually had our calls forwarded to another number. Unlimited access to rack 'em up. Courtesy of us!



All we had to do to remove the forward was dial 73#. But, we were completely clueless as to what was going on.



It seems so obviously deceptive now. We feel pretty ignorant that we were none the wiser.



But, hindsight is 20/20.



By the way, those charges only went thru 7/16. We probably have another hefty bill coming next month. We aren't obligated to pay our phone company, but there was a third party company (the one used for the collect calls) involved.



I did some poking around online. The company associated (the one we owe for the charges) is Correctional Billing Services. It's for inmates to set up accounts to place collect calls to their friends and family. Evidently, fraud is a common problem as there's a Dispute Center link on their website, and fraudulent calls are the first topic listed.



I have to fill out an investigation report, file a police report... complete and total insanity.



It may take up to 30 days for the investigation to be complete...and to release us of financial obligation.



So, guys, heed my warning.

IF YOU ACCEPT A COLLECT CALL FROM A JAIL, AND DO NOT KNOW THE PERSON....HANG UP THE BLEEPING PHONE!!!!

Wednesday, July 29, 2009

Med Update

In addition to the new EEG developments and LGS discussion, we also touched on meds at our last epi visit.

You may remember the mention of Felbatol in one of my previous posts. We actually decided at that time that we did not want to introduce it just yet. Too many pending questions that could have easily left us scratching our heads and confused. Stopping, weaning, and starting meds for Austin at the same time is not a good idea. Many factors to consider.

Plus, the warnings online for the med scared me senseless. It's considered a Black Box med. Meaning, there have been serious safety hazards and therefore must contain a warning stating those risks in a black box. Depakene (valproic acid) also carries similar risks. Austin handled that one like a champ though. But, before we started it, it took serious persuasion on our epi's part to convince me it would be okay.


Quick facts:

Felbatol can cause liver and blood complications. So, it's vital to have routine lab work to monitor any changes in the blood or liver function that could occur.

That's why it should never be used as a frontline med. It should only be used in severe cases when many other AEDs have failed.



As dead set against it as I was in the beginning, we did decide to give it a go. After the epi sat us down and thoroughly explained it, we felt much more at ease. He told us that there have been very little, if any, fatalities in young children. He also said that the majority of the serious complications have occurred in adults. I don't think it's even recommended for adults anymore actually. Anyway, he said he would not recommend it for Austin unless he was confident that he could tolerate it.

We will need labs every two weeks for the first few months. Also, it's a fairly concentrated liquid so he will not need much at a time. We will start slowly with .5ml three times daily and work our way up to 2ml three times daily over the next four weeks.

Although this has proven to be a med that helps when others don't, I'm still weary about it. Anxious to see results, but realistic and logical at the same time.

Well, let me get honest here. That's what my brain says. My heart always, ALWAYS hopes it's the one. There's no rationalizing with my heart or talking logic to it. It feels what it feels.

And right now, it's feeling desperation. For just a little help here. Some relief. With no major complications. Or side effects. Something that will benefit him. That will continue to let him see past the fuzziness. Not bring him back down.

So, while my brain keeps the sense in check, my heart really wants to give it a chance. Talk about an internal struggle.

I've gotta keep reminding myself that every new med has potential. Every new med could be our chance. Even if others have failed. We've gotta keep trying, right?

Tuesday, July 28, 2009

The Good, The Bad, and The Cute!

You're all caught up on the good news we received in Houston last Friday. No hyps! Yay!


But, I did mention there was some alarming news we learned too. The bad.


I haven't been able to get into it until now. I didn't want to put a damper on the good.


So, here it is.


Our epilepsy specialist dropped the bomb. The one I've been dreading to hear for about a year now. Ever since I started suspecting that Austin was having atonic seizures instead of just single, isolated myoclonic infantile spasm seizures.


It was...






The L word.






LGS.






Lennox-Gastaut Syndrome.

It's a seizure disorder too, just like Infantile Spasms/West Syndrome. It has it's own triad of symptoms too. In order for a diagnosis of West Syndrome (what we've been dealing with -I don't usually refer to it as West Syndrome) to be made, the child having the infantile spasm seizures must have the following: the infantile spasms, of course, an EEG pattern of hypsarrythmia, and developmental delay. In order for LGS to be diagnosed, the child must have multiple types of seizures (typically atonics and tonics and usually resistant to AEDs), have a distinct EEG pattern, and cognitive impairment.


All kids with IS are at a higher risk for developing LGS. Kids who have developed different seizures on top of the infantile spasms are at an even higher risk. Those who have had unsuccessful treatment of those seizures over a long period of time...the risk is even higher.


Austin does not have LGS. BUT, our epi feels quite strongly he is headed in that direction. So, while the hyps-free EEG was good, the fear of another disorder around the corner is looming. It has been a fear of mine for a very long time. As soon as I learned of it and learned about it, all I could do was hope and pray that this would not be our fate.


He does not have the EEG pattern, but he is in the highest risk category he can be in at this point. He also does not have tonic type seizures either. But, he does have the atonics. A very bad sign, according to the epi.


Although he did say that LGS is just another name for another disorder and it wouldn't necessarily mean it would be worst case scenario of LGS, it scares the life out of me. Some kids with it fare well. Others. Not so well.


I haven't heard many positive stories about this syndrome. That doesn't help the fear factor. Fact is, I try to avoid looking it up entirely. And I've been that way for months. Fearing if I knew too much, I would realize it's a very possible future for us. Because he meets several of the diagnostic criteria already. My mind doesn't like to go there. Worrying about another disorder before we've even tackled the first. One thing at a time is the only way I can handle this. But, he said it out loud Friday. There's no more pretending I'm ignorant to it.

But, what can I do about it? Nothing really. Hope, pray, and love him through this. Concentrate on today before I know what tomorrow holds. Although my dreams of beating this IS and continuing on with our lives seizure and disorder free get a little fuzzy sometimes. With multiple interruptions now in my mind containing a bold LGS flashing brightly in my line of vision. All the while, constantly trying to push it aside and remind myself TODAY. TODAY. Not tomorrow. A tug of war in the brain so to speak.


So, that's what I'm working on. Today. Today, he is a happy, squealy, lively new child. There is a new light in his eyes. One that should not be dimmed because of my fears. Of what has yet to happen.



And, so, with that...(And to end this on a good note)




I give you...


THE CUTE!

The past week or so has revealed, little by little, the Austin I remember. It's been months since I've seen this personality of his that, honestly, I almost forgot existed. He's been hiding beneath this hazy cloud of medicine. Slowly, it's lifting. Each day he is being released to me just a little bit more. I can't even begin to imagine what I might see if there were no more seizures stealing their own piece of him.













I know this alertness may only be temporary. There will be new med trials to come...all bound to have their own side effects. But, this possibly temporary phase has given me exactly what I needed. It lights a fire under me again. Because I see now that the Austin I knew is not really gone. He's still in there. Waiting to be saved. And it gives me the strength to keep pushing. And this is just a glimmer of who he really is in there -under the medicine cloud. I don't want just a taste of how he should be. I want all of him back again.

Monday, July 27, 2009

Hyps! Hyps! Hooray!!

So, I've expressed my excitement for recent absence of hypsarrythmia in Austin's latest EEG. It's a truly positive step in the direction we would like to go.

A more organized, hyps-free EEG is exactly what we were hoping to see -although I was not expecting it.

For all of you that read my last entry, I explained that it was a spontaneous run through of the newest developments...not many explanations to go along with it.

So, this is my best attempt.

Hypsarrythmia is a pattern that is characteristic of Infantile Spasms. I'm not 100% sure, but I think that this pattern is ONLY seen in kids with IS. It is a very chaotic and irregular pattern, also described as an electrical storm occurring throughout the brain. All day. Every day. Regardless whether there are seizures occurring. It just takes over. So, you can imagine what this means for our kids' development and so forth while experiencing this type of constant interruption. Another downside to hyps? It makes it extremely difficult to interpret the EEGs themselves. For a seizure focus and so forth. I am no expert, this is about the extent of my knowledge. There is more specific information available on the web, that describes the voltage and whatnot...but it's over my head most of the time anyway. I'm just explaining what I've gathered over time, and how our epi has described it to me. I guess I could include a link to more reliable, precise info. I'll have to find the best source so maybe later...

Some kids do not have this pattern, but most do. Diagnosis is sometimes difficult when it's not present, simply because there are other infantile spasm-like movements that resemble IS. Hyps is usually the identifying factor in making the diagnosis of IS. Austin's very first EEG did not show the full characteristic hypsarrythmia pattern. I believe it was more of a modified hyps pattern. The neuros at the time said that it wasn't what they would normally see, but that it was most likely headed in that direction. The next EEG, three months later, did show it. And there has been no improvement up until now.

Simultaneously with his new emerging personality. And developmental progress. Our epi said it is most likely the combination of the decrease in meds and improved EEG.

Another reason of mine for not exploding with optimism. It is typical for the hyps to start fading around this time. Dr. Chugani told me that during our visit back in March. Which reminds me, I'm debating on whether or not to contact him and let him know that the hyps are gone. He did tell me to let him know, but deep down, I still think it's too soon for Austin to be reevaluated for surgery. Maybe I'll contact him to find out where to go from here -like what other developments need to occur for us to take another serious look into surgical intervention.

So, what does this mean? I still don't know to be honest. Yes, it's good. Very good. But, his seizures are far from gone.

My main question is, what is it that specifically causes the lack of progression in development? Three factors to consider. The constant, chaos in their brains, the seizures themselves, or the underlying cause which triggered the IS disorder to begin with. Maybe some of my more seasoned IS friends can help me with that.

So, while I'm thrilled to not have that in the picture anymore for the moment, I'm still concerned for the future. This does not mean it's the end of the battle. We still could be a long, long way from the end.

But, I will still celebrate the new skills and joy that are now so evident in him, while still keeping a firm hold on my goal. No seizures and a normal EEG.

Then, maybe I can breathe again.