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.


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.


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.


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.


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 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.

Saturday, July 25, 2009

A loaded week..blogworthy for sure!

What a week it has been!

A week of holding my breath, counting seizures, freaking out, second guessing the med weans...

Seizures have been up there. Really up there. But, as obvious as it may seem to everyone outside our household, I'm still not entirely convinced it's the weaning. Wondering, but still not sure.

His alertness, personality, cognition, on the other hand...THAT is MAJOR!!! I believe it was Wednesday when my mom called for her daily lunch hour Austin check in. I had been waiting on that call because this time, I had definite good news! He had been a different child all day. Seizures were waaayyy down (he'd only had about 8 or so when she called -he's usually in the 50ish range by then), and he'd been laughing and engaging like I hadn't seen in months! He's also made progress in some motor skills...he's been crawling over objects but would rarely, if ever, take the initiative to do it on his own. I would have to set him up for it (like put him belly down on the pillows or the edge of his ball pit) before he'd crawl over. This week has been full of chasing him around the house because he's been crawling over his playroom barriers (the blankets and pillows in the doorways)!! It's exhausting...but WONDERFUL!!! We've also seen a new curiosity peak in him recently. Instead of focusing only on walking or his select set of toys, he's been exploring more and more. Getting into everything! Wanting everything! It's been amazing...and tiring. So much that I haven't had much opportunity to update. I've been savoring the good moments...but also still very much aware of the nasty seizures that seem to waltz in and take over. Too often. A big high is typically followed by a major crash, right? That's where I've been. One moment is exhilarating, while the ones that follow zap me and take me back to Seizureland. Personally, I think those clusters and drops are much more difficult to witness after such a promising and joyful moment of peace from it. Anyway....

We had a typical EEG and epi visit in Houston yesterday. What did I say earlier about worrying about the EEGs? I'm always worried and nervous. We weren't expecting any improvement because of the ongoing infantile spasm and atonic seizures. They are the same if not worse than they were during his last one.

So...when the epi came in and proceeded to tell us that the hypsarrythmia is gone...I was obviously surprised. That's right. It's gone! The EEG altogether has improved quite a bit. There is much more organization and improved sleep spindles as well. Many of you may know exactly what I mean when I say all that...many may not. This was a spontaneous post, so I will get into specifics later on...when I can collect my thoughts better.

I just wanted to update everyone on this past week. It's definitely a good thing that the EEG has improved. What this means for now on...still unclear. Remember, we are still dealing with atonic seizures as well -a totally different type from the infantile spasm seizures. But, still a positive. Actually, the most positive piece of news we've received since he was diagnosed.

There was also some alarming news we received so that puts a halt on the parade for now. If you were wondering why I'm not as excited as I should be. I am happy though. Very. ANY improvement on the EEG is a step forward. But, I'll get into the rest tomorrow maybe.

As for now. Austin is alerting me that he is awake...and ready to get up!!! We're heading off to visit Grammer!!

Tuesday, July 14, 2009

Counting again

Our first full 24 hours off Depakene (valproic acid). I chose not to wean since the epi didn't think it was necessary.

I rarely get anxious or scared over weans. Actually, I'm usually just the opposite. Austin tends to do really well, so I'm always glad to see an ineffective med go. But, this one proved to be a little different. I've been watching and waiting for extra seizures. Nervous. Paranoid.

I even picked up the notebook again to reinstate the counting routine. Day three so far. I thought I should start counting again before the wean.

Sunday he had 15 drops and three clusters containing 24 seizures. Grand total for Sunday: 39

Yesterday (Monday) he had 19 drops and 5 clusters containing 33 seizures. Grand total: 52

So far today (Tuesday 8:30pm) he's had 22 drops and 3 clusters containing 51 seizures. We're at 73 right now.

I only gave him one of his 3 doses of the valproic acid yesterday and none today. So, it may look like there's a trend here with seizures going up. But, this has actually been very common for him. Low even. Sunday was VERY low. He had 4 clusters in one hour on Saturday. I didn't count them all, but I'd be willing to bet that in just that one hour, he had at least 75. So...this isn't unusual for him. Especially to vary so much from one day to the next.

It's impossible to think I've caught them all. There's no way. I would drive us both nuts by smothering him like I used to. Just to catch them all. So, I've been more relaxed this time around, and it's working it out so far.

Zonisamide is going to be a tough one. It will take us six weeks to complete the wean. He's currently taking six 50mg capsules daily. We will lower it by one capsule a week until he's done. I'm nervous about this one too. He's been taking this for over a year now. It was his first med (other than ACTH), and for months and months I was convinced it helped him tremendously. I would even completely freak if I was just a few minutes late in giving it to him. It's hard to believe he'll be off it soon. It's become the one constant since this all began. Our one and only familiar med during all these different trials. I'm relieved it will be so gradual.
(Leave it to me to get emotionally attached to a freakin' med...that is NOT working! I'm not kidding when I say I have issues with change!!)

Update: I started this post about 8:30pm, but wasn't able to finish it all at once. Austin's seizure count for the day ended in 94. Much higher than yesterday...But not above average. I'm trying to be patient...and not paranoid that's it has anything to do with the meds!!

This old house

A visit this morning from our social worker and ECI services coordinator prompted this post.

During conversation, she pointed out how nice Austin's play room is set up for his needs. Soft carpet, no hard, bulky furniture with sharp edges, padding where necessary, soft toys, etc. She remarked at how we have efficiently accommodated his special needs. just kind of happened that way. Interesting story, really. Full of irony and fate and circumstance.

We started out as first time homeowners about five years ago in a town about thirty minutes from here. Just outside the city where I worked and an easy commute for Chad's job, but nearly an hour away from both of our parents.

Upon moving there, maybe about three months in, we realized there were numerous flood claims on our house that were not disclosed to us. But, after learning that, we would then be obligated to disclose to future potential buyers. We knew when we bought it that it would not be our forever home, merely a good starter house (which by the way was completely covered in ceramic tile). What a bind we were in. A small house with a small yard...and soon to have disruptive and questionable neighbors. Man. We were screwed!

In September of 2005, we were hit with a whopper of a flood, courtesy of Hurricane Rita. Six months of renovating and living in a travel trailer in the yard was quite the test. But, Chad and I soon learned we had a knack for remodels. Turns out he's quite the rookie carpenter!

(we lost three six foot windows in the front)

(Above: Some of the interior water damage Below: The front windows that cracked and buckled from the wind and water)

(Clockwise from left: flood damage; before the flood; after remodel)

(Before and after)

So, we lived there for about another year, when we were confronted with a proposition. A city-wide buyout of excessively flooded homes...which we knew we'd be crazy not to accept. The thought of ever selling our little starter house for enough to recoup costs was no longer conceivable. We desperately wanted to take it.

And this just so happened to come about during my pregnancy. Actually, I also found out during the same week that my job site would be closing it's doors, and I would soon be jobless. The scheduled closing was to take place within a couple weeks of my scheduled due date. How's that for irony? On top of that, my excellent insurance benefits would continue for an extra 30 days beyond the closing.

So, we happened upon this home. Not very big either, but it's sufficient. There's a couple acres here...and it's definitely more private and remote. Sitting halfway between our parents and Chad's work, it was the perfect location. It needed extensive TLC. But, we were ready for another challenge. We began remodeling little by little over the summer of 2007. The first week of October, we were ready to move in (renovation was still not complete, but we were running out of time). My job ended about the same time...we closed on our other house with the city in mid-October. Austin was born on October 25, we were released from the hospital Oct. 28, and my insurance ran out Oct. 29.

Everything just happened to fall into place perfectly, wouldn't you say?

As time went on, and Austin got a little easier for us to handle, we decided to pick up where we left off with the remodel. That's when Austin's play room was started (although the intended purpose at the time was a living room). Actually, Chad had started demo on our master bathroom first. Midway through, I convinced him to shift his focus on the other living room. I told him that Austin would soon be crawling and we needed more living space. So, that he did. In early May of 2008, the room was ready for flooring. Refinish the hardwood floors or install carpet? Hmmm. I really wanted the wood floors. But, we convinced ourselves at the very last minute that carpet would be best for a baby. So, the first week of May, we ordered the carpet. About a week or so later...Austin was diagnosed with Infantile Spasms.

About a week after arriving home from the hospital, the carpet was in and ready to be installed. Of course we wouldn't realize until later how thankful we were for making that last minute decision on the carpet. Or the last minute decision to remodel that room instead. It soon became Austin's hangout. It was wide open and he had it all to himself. He still does.

(Right after new carpet was installed)

So, we never planned to give Austin an entire play room. Not that we didn't want to..but we didn't think we had the space. We didn't plan to carpet that room in the beginning. Just like I didn't plan to lose my job. Or move so close to my parents. It just kind of happened that way.

Shortly after Austin was born, I thought how crazy and lucky and fateful that was. I honestly didn't want to work right after having a new baby. My insurance was so wonderful that I paid $0 altogether. I really wanted to be closer to my parents. And we desperately needed to get out from under that house. So, for nearly six months of mucho stress leading up to it...everything fell together impeccably in just one month.

For so long I've looked back on 2007 as a year of plans and obstacles coming together. Almost as if He was setting the stage for us. Only to wonder why 2008 was the year our world would come crashing down...destroying us...those plans and achievements falling apart before our eyes. wrong word...Rocking my faith beyond belief.

Honestly though, now, I can't even imagine living there in that other house with Austin and the situation we're in now with him. Being so far from family. Ceramic tile galore. An arm's length from neighbors I didn't trust that kept the noise going every hour of the day. Floods and a baby and possibly more travel trailer living in our future. Need I say more?

We have a home here. A home that is still rough around the edges in terms of aesthetics. But, a home that is safe, where neighbors come to lend a hand. Even to help you give your baby an injection. Or offer to watch him while you take a much needed shower.

It's not as cute...or the other house..the newly remodeled updated house. But, it's more of a home than that house could have ever been.

Ironic that I say that now. Because just months ago, I had been complaining about how I still hate it here. How I miss our old house. But I wasn't looking at the bigger picture.

I missed our old lifestyle. The life that had no seizures or worries. The one where when I tried to invision the future, I saw a baby running around carefree.

And, I still don't particularly like it here in this small, unfamiliar town in this old house that still needs tons of repairs. It's always felt like a stepping stone. Not our forever home.

Even with that said...I still can't imagine being anywhere else right now. This is home. At least for now.

Monday, July 13, 2009

The Proposal

I've been dying to get on here and do some bloggin' about this since Friday. But, plans were still up in the air, so I restrained myself. I certainly didn't want to speak too soon.

We have a new plan on meds. And, man, reaching an agreement did not come easy. Not just between us and the epi...but just reaching a decision about what WE wanted to do was a challenge. We were presented with enough to make any parent's head spin. First, let me start with what I had in mind when I placed the initial call....

Personally, I wanted to wipe our medication slate clean and start over. 100+ seizures a day does not signify seizure control...add to that unwanted side effects (drowsiness, lack of coordination, balance loss, etc). Why keep him on so much when it's obviously not controlling seizures? In no way do I want to quit with med game completely. But I wanted a new prospective. There's too many uncertainties where his current meds are involved. Are any of them helping/not helping...are they affecting him cognitively...are any of them making them worse? He's been on zonisamide for just over a year now and valproic acid for seven months. Initially, I thought there were improvements. This is where it gets complicated.

There have been three, possibly four medications that seemed to have a negative effect on his seizures (ACTH, possibly Keppra, vigabatrin, and Banzel). While on ACTH, he had clusters that would last over 30 minutes which would contain in excess of 150 spasms sometimes. Very rarely did he have a cluster that did not contain less than 50-60. And, this started immediately after the first injection. Every time we would increase, we'd start seeing the seizures go up.

We started zonisamide the very same day that we started the ACTH wean. We slowly increased zonisamide as we slowly decreased ACTH. After the second increase, we started seeing improvement. Was it the addition of zonisamide...or the decrease of ACTH? By the time Austin was completely off ACTH, he was having maybe 15-20 a day. Quite an improvement, right? We left him on lower doses of zonisamide for about a month. He did extremely well. But, 15-20 is not zero...which was our goal. So, instead of increasing zonisamide again, our neuro at the time, chose to add Keppra. We gradually started seeing more and more seizures, until he reached an average of 50-60 seizures a day.

So, I'm not going to go through the entire history of our med trials. This is just to serve as an example. To show how foggy this medication picture is. The same happened with vigabatrin. We saw immediate increase in frequency and intensity with this one. But, we stuck it out for about two months. This is when I stopped counting and recording every single seizure. They were coming so frequently that I could not keep up...and it made me absolutely crazy. But, just like ACTH, when we started the wean...the seizures went down as well. BUT...the tricky part is that we added valproic acid at the same time. I knew a lot had to do with getting him off vig, but I also thought the VA was having a positive effect. We started to see a new Austin. A smiley, happy, more cognitively there, Austin. I was sold.

But, just like before, just because the seizures had decreased, didn't mean we were done. Our goal was complete seizure freedom. So, on we pushed. Adding Banzel. A complete nightmare. Back to back clusters. I hadn't seen clusters so fierce since the ACTH days. Our trial lasted a mere three weeks. And, soon after, we introduced Klonopin. Once again, I thought we were seeing good results at first. At first.

So.....can you see where I'm coming from? Could it be more of a relief getting OFF certain meds, rather than getting ON others?

With that, you're caught up for what I was proposed on Friday. You had to know those details to understand why it was such an internal struggle for me to think clearly.

The proposal:

Stop valproic acid.
Wean zonisamide.
Keep Klonopin unchanged (since we have not completed the trial).
Add Felbatol.

Whoa!!!!! Slooooowwww down a bit. You want me to do what?!! My mind could not process so many changes at once. Way too much going on at one time. Way too much. I do not know without a doubt that VA and zonisamide are not helping, although my suspicions are that they are not. But, cutting them both off so close together would create confusion if the seizures were to dramatically increase. It could be due to losing a contributing med or the wean. And, how would we know the difference? Or which one even? What's more, adding Felbatol at the same time (since it's possible some meds worsen his seizures) may only complicate issues even more.

I'm much more comfortable with dropping those two than I am adding Felbatol though. My whole goal in wanting to wean him off some of these was to see if they were worth the side effects. The only way to know that is to take him off. If seizures went through the roof, I'd have my answer. If not, I'd still have my answer. But, there was no possible way I would confuse matters that much more by adding another med to the mix just yet.

I told the nurse exactly that when she called me late Friday afternoon (around 5pm). She agreed to relay my message to the doctor and call me back with new instructions. And, given how late it was, I knew it would be today until I heard back.

So, bright and early, our epi called me back himself (very rare for him). We discussed my concerns and he explained his reasoning for so many simultaneous changes. He's less convinced the valproic acid is working than the zonisamide..therefore, wants to just stop that one cold and wean zonisamide slowly. He pointed out that Felbatol just may stop his seizures and asked would it be worth it to distinguish effects of all the meds...or see Austin seizure free? Point taken. But, not so fast. It's not like I'm not closing the Felbatol door completely. But, how screwed up would we be if seizures went crazy...and we wouldn't know the culprit? Isn't that a valid concern?

Then again, it's quite possible that I may be way over thinking this. Maybe I should just tell myself that neither of the two could possibly be considered to be successful with 100 daily seizures occurring. Even if they are's obvious they're not the ONES. What does it matter? I think that's what our epi was trying to convey to me. And Felbatol could be our next hope.

That's another blog. I'll just leave the Felbatol concerns at this...I'm not going there just yet.

So, the new plan:

Stop valproic acid (although I'm going to wean it, I think).
Wean zonisamide much slower (we're doubling the weaning period -six weeks to be exact).
Keep Klonopin.
Wait on Felbatol (although I will most likely pick up the script to have it on hand -as it's not one our pharmacy keeps in stock evidently).

There it is. Quite a long story for such subtle changes to the original plan, huh? There's a little more to this (namely his opinion of Austin's condition and the Felbatol), but I couldn't possibly cram any more into this blog today. I'll get to it.

Wednesday, July 8, 2009


I've gotten pretty bad about only posting once a week, haven't I?

I guess I'm just running out of hot topics. lol

We are sort of stuck in a blah moment too. No exciting new med trials, a slight plateau in development, you know...just nothing new.

I will say that I got a wonderful mental break over the weekend. We took the boat out on Friday while Mom came over to watch Austin. A twelve hour shift she took on!! But, it was honestly exactly what I needed. Of course I came back with a nice burn (the result of no sun exposure in three years), bruises (from crashing on the kneeboard), and sun drained!! I could barely move the next morning...kneeboarding was just not as easy as I remembered from when I was twelve!! lol A tired and slightly aging body and a little extra weight makes quite a difference I suppose!!

It was wonderful though that she came here. There was no packing of the endless Austin gear or drop offs to be arranged. And no having to get back before his medicine and bedtime...He was tucked in and snoozing away by the time we got in. That was awesome!

I realized how much that helps me mentally (because trust me, there was no physical break involved!). It's not that I don't think of Austin when I'm away...or worry about seizures either.

But, not having to witness them over and over and over. It helps me recharge a little. Because each one I see takes a little bit more out of me...emotionally. Out of sight, out of mind is definitely not the case. But I only saw one cluster the whole day. That did help. Tremendously.

And he's doing okay for the moment. Seizures aren't outrageous...although far from gone. It's been average. Drops are fairly minimal too. Could be typical Austin-seizure-cycling going on though. He tends to have a great week followed by a horrible one...followed by a decent one...then by a great one again. An endless cycle.

But, we're hanging in. Still waiting for our EEG and routine visit on the 24th of this month. I always get worked up about visits that involve EEGs. Wondering if there's been any improvement...or if it's worse. He's still having numerous seizures on a daily I'm not expecting much. We'll just have to wait and see.

By the way...did I ever post about the See 'n Say? We were so excited when he started to grasp the concept of it. We would pull down the handle and he would watch and listen...then grab the handle to restart it. He couldn't quite get his motor skills going enough to pull it down himself. He would really just wiggle it. He's definitely getting the hang of it now! One day last week he just "got it". With his right hand no less (he tends to favor his left arm for most activities). Slowly but surely...we're moving forward.

In fact, yesterday, during his one year ECI evaluation, we realized that he's met and exceeded about 80% of the goals we established six months ago. Goals that seemed unattainable at the time. But here we are...having to make new ones!

I can't tell you how much it blows my mind to know...that even with this monsterous electrical activity going on in his little brain all day everyday...that he's still able to piece certain concepts together and learn. Yes, he's struggling in some of the very basic areas...but there are still wheels turning up there. During all of this. Our IS kiddos are such fighters!!!

Thursday, July 2, 2009

Following that last post has been kind of tricky for me. In a way, I thought it could be educational. You know, to either compare notes...or to see first hand what I've been trying to describe for months. On the other hand, I haven't really wanted to post since. It almost felt like I did something wrong. Like I was putting him on display or something. I've never thought that when I see similar videos of other kids. I guess it just strikes a funky chord when it's my baby. Like that should be private. But, I'd like it maybe help someone I'm going to leave it up.

Plus, I dove head first into a slideshow project...that I've been working on for over a year (since Austin was six months old). I've been through three different programs working on it. Either I can't get it the way I want it...or I can't get it successfully saved. One time, I actually got it finished (forgot to save my changes) and my computer shut down. I don't think I attempted to work on it again for six more months. Anyway, now, after trying yet another program, I have it completely perfect...and I can't save it to my computer...or to a disc...or to a DVD. I'm at a total loss here!

Thankfully, it's saved as a project, so maybe I can get my mom over here to help me! She's always rescuing me when it comes to computer glitches, etc.!!

In Austin news...

We continue to tread water here. Nothing has changed. Klonopin does not look promising. I've seen several of those face first dives...two a day maybe. That is obviously not good. He lands sprawled out on his belly...even gets red marks through his helmet. It leaves him confused...and crying. Which ultimately leads to me tightening up the Austin freedom leash...and so forth.
Clusters are still a part of everyday. I'm finally starting get a good handle on predicting them. Like a lot of kids, he almost always has one when he wakes. That's pretty much a given. Now, I'm noticing that he will almost always have one in his high chair. Rarely fails. I don't get that at all. Then there's the weirdly timed ones...the ones that just come out of nowhere. I know that when he suddenly gets's coming over him. He's finally starting to sit down while he's having them too (most of the time). It's weird though. If he has something in his hand, he'll get extremely focused on it. Manipulating it. Or functioning it. If he's empty handed, he'll just rub the carpet (or me) really he's seeking some sort of stimulation. This is definitely different for him. He used to just blankly stare off (still does on occasion). Anyway...

Just trying to keep moving forward...which is tough when I know there are so many things that are holding us back.

I hope everyone has a great 4th of July weekend! We are planning an outing on the lake (YEAH!) for Friday (not even attempting Saturday!). Providing that there are no more hiccups getting the boat ready to go!