Gonna get there soon

First with the updates. Then with the story.


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

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

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

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

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

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

Now with the story...

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

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

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

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

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

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

I'm not letting go of this.

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

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

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

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

But, I do now.

The Hunt

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

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

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

Surgery.

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

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

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

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

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

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



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

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

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

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

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

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

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

Alive and well

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

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

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.

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!

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!

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!

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.

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.

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.

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!