A glimpse of Austin's clusters

I doubt I'll be doing much video posting on a regular basis -it takes forever!

But, I managed to catch this cluster during breakfast this morning. I've never posted any of Austin's seizures before, and my descriptions thus far may not have done them justice. So, I thought I'd share this since infantile spasms can vary so much from one kid to the next...even Austin's clusters have different ranges in duration and intensity. This was medium I guess for him. There is head bobbing, a little eye movement...and the infamous hand moving and slapping. Note that the right hand is much more involved than the left. He no longer brings both arms up as in a typical spasm.

I will try to catch a drop seizure. Those are much more intense than these. And they are usually followed by a totally different reaction from him. They're hard to catch on camera since there's no predicting when they'll come...and they're over in a flash.

A glimpse of Austin

I'm sure I've mentioned before how technologically challenged I am.

My electronic go-to person is my mom. She can figure just about anything out that's electronic-related. Me? I like to be able to push the power button and do what I need to do...without a manual!! Patient, I am not.

I absolutely cannot figure out how to transfer videos to my computer from my camcorder for the life of me!

So, I was so proud of myself when, after having my digital camera for nearly three years, I finally thought to use the movie clip mode! And then actually managed to successfully take a five and a half minute video from my digital camera, transfer it to my computer, cut it down to two and a half minutes, and....get it on this blog! Not to mention with the slowest internet connection on the planet (I live in Primitivetown, USA, where high speed is reserved for civilization)!!

Anyway, I didn't shoot this with the intention of uploading and sharing. I was really just experimenting with my camera. Quality isn't the best, but it works I guess. It's just a typical Austin walk-session (probably boring to anyone other than his mommy ;-), with the normal Austin squeals and stumbles. No seizures I don't think...Just happy play!

weirdness

Okay, so today's researching started as an innocent inquiry.

Is it common for a child of Austin's age to get cradle cap? Or dandruff. Seborrheic dermatitis specifically.

He had a major bad case when he was about two months maybe. We tried everything. Everything. It disgusted me. I have this weird, cringy-ness about scales and bumps. Uck!! It made me crazy.

So, I believe it was that January after he was born, we took him to the pedi. Selsun Blue was the order. And it worked very well! After about a week or so, no more nasty scales!

Over the weekend, I was playing with and admiring his ever-so-thickening mane...

And I spotted...

You guessed it.

Those yellowish scales again! My first instinct was to scratch them away...I can't stand to look at them. But I contained myself. After all, it's not my head to scratch!

Old me would just break out the Selsun Blue again and wash until it cleared up. New me...Detective Me...Analytical Me...wanted to know more. I don't take in anything as typical baby stuff anymore. I have to know if there's a reason for every new development. To see if there's a connection somewhere. I've googled just about every crazy medical combo I can think of over the past year!

Anyway, I thought it was odd. Him having this again at 20 months old. I wanted to check into it to see what the normal age range is for "cradle cap".

Various ranges. Some websites say newborn-3 yrs. Some say up to 12 months. Others up to six months.

But, what really struck me?

On almost every site, it linked seborrheic dermatitis (the official medical term) to neurologic conditions -stroke, head injury, and Parkinson's disease were the only specifics I could find.

Then came this:

Seborrheic dermatitis usually appears in infants younger than three months and adults. It is also more common in men, and people with epilepsy, Parkinson’s disease, HIV, and vitamin B deficiencies. It appears more likely to occur in people with oily skin, those who don’t wash their hair often, and those undergoing illness, stress, or hormonal changes.

I also found something saying excessive vitamin A can cause it... and lack of vitamin B6 and B12.

By the way, he's a clean baby! He gets regular baths and hair washes!! Just had to throw that in there! ;-)

Why the heck is there a connection between epilepsy and dandruff??? I've read and read and read...the possible causes they cover just doesn't make sense for this connection. Of course, I'm no physician either. Just a constant over-analyzing-obsessive-mommy!

up to date

While flipping through my newest baby mag (Parents, I think), I came across a brief article on researching diagnoses.

I can't believe with all my researching I've never stumbled on this one, but both the magazine & website claim that it's reliable and up to date...hence the name uptodate.com.

I did my usual poking around. Seems pretty straightforward and precise.

But, the catch?

You can only read little snippets. Unless you have a subscription of course!

Of course...accurate, reliable, modern info...FREE???

Yeah, right!

Anyway, I was just wondering if any of you have subscribed...and if it was worth it.

Regarding my last post...

I didn't realize how awful it sounded until afterwards...

I'm not giving up on finding our miracle drug...

And, surprisingly, I'm not that gloomy either -even though I came across that way. Up and down is pretty typical for us. Kind of sucks to say...but, hey, that's life these days.

Just not impressed with our current treatments.

I was telling our social worker earlier today that I don't know what's seizure disorder related or what's med related as far as delays and personality goes...He's a stumbly wumbly mess right now. His interactive and chipper moments are getting fewer and shorter.

He's been walking for about 8 months now...but you'd almost swear he just started by the way he flops around. Yeah, he tries to run at times -which is awesome! But, that usually ends with him in a heap on the floor. There have always been balance issues.

He almost can't even stand up straight at times, and it seems to just keep getting worse.

Like, the more meds, the more wobbly he gets. Every AED has it's side effects, and I'm willing to cope with that.

IF THEY WORK!!!!

100+ seizures a day doesn't seem to be an indication of a med doing it's job. So, what am I really doing for him?

As much as I'd love to see him off all meds, that's seems highly unlikely given the amount of seizures he has. But, could it be feasible to taper them slowly one at a time just to see if they're even working? What's the point of keeping him maxed out if they're not?

It's been so long since he's been med free. I just really really REALLY want to see who he is these days without the side effects...and more specifically...what the side effects are exactly.

Is he less interactive because he's drowsy from meds? Or, is it a developmental delay due to IS? Is he wobbly because of all the meds...or is a balance issue as a result of the seizure disorder?

I know our epi is aiming to do the same...I mean, find one that works and get him off the rest.

What's the plan if we don't?

I'm just getting anxious about our visit coming up in July. Ready to sit down and discuss our options again. Get a new plan. One that seems more realistic.



Oh, and the pain thing?

It was definitely unsettling for me...and I hate to say that it helped to know he's not the only one that's had that type of reaction. It's not like he never shows pain though...just, not as I'd expect. He'll cry when he trips and falls sometimes...or lands on a hard toy. But, overall...I don't think he reacts to pain accordingly. Taste too. Anyone know much about hyposensitivity? I've looked into that before...But one thing that stopped me. He's extremely sensitive to getting his arms rubbed. It's almost like he craves that type of stimulation. If anyone can shed some light on this...I'd appreciate it!

Up. Down.

It's been a wait 'n see type week, so new blog entries have suffered.

I've learned not to post over great days...because those typically don't last. Not to sound too depressing, but that's how it goes here. Up. Down. Up. Down.

There were a couple good days last week...seizures seemed low, Austin seemed energetic and alert.

Always to be followed by the days where I can't help but scrutinize every single aspect of his treatment. What's doing what (med-wise), is anything doing anything?

I put in an update to our epi clinic, telling them seizures are way up there. We were instructed to increase Klonopin again. Now he's getting two 0.125mg tabs twice a day. We also had to get drug levels of valproic acid and zonisamide checked...to see if that may be why the seizures have increased (maybe the levels are low). Haven't heard back yet (that was Friday).

I did notice something while at the lab though. Something extremely unsettling.

Austin didn't flinch. Not a peep at all when he got stuck. He just stared straight up.

What was up with that? The lady doing the blood draw just kept going on and on about what a good boy he was being.

But, that lack of reaction to a needle in his arm really bothered me. Not that I wanted to see him in pain. But, come on.

Am I overreacting? Should I just be relieved that I didn't have to see that pained look on his face?

I don't know. It just didn't seem normal to me. That he didn't even seem to notice anything.

Anyway, I haven't noticed much of an improvement since we increased last week. I'm not anticipating much either.

I'm honestly getting to the point where I want to get him off everything. See how he does minus three major AEDs. And just start over fresh. I'm just not convinced these meds are doing anything...exept making him clumsy and zombie-ish...

We see the epi again in July. Hopefully, by then, we will have given Klonopin it's fair trial and we can discuss new prospectives.

mommy-wise

If you've been following, I guess you're aware of where we've been and where we are, seizure-wise and development-wise...


But what about the emotional-wise progress?


It's not easy to see on one of those bad seizure days, because all that seems visible are obstacles on that particular day.


The seizures seem to make everything fuzzy and I tend to focus on the negatives...like the seizures never stopping...or the milestones we may never reach.


I feel stuck on these days. Trapped in an emotional standstill. And I can't see it.


That being the changes and progress that have occurred.


Exactly what has changed?


I have.


I have slowly....slowly started to incorporate these changes into my life. Instead of assuming Austin is "bubble boy," I've tried to make accommodations to suit his needs. I moved dangerous toys from his play area, so that I can let him play freely. I replaced them with soft, plush safer toys. I got him a shopping cart cover so that he could experience the joy that is grocery shopping (haha)! I pushed out the denial and got him a helmet so that he could walk safely. All these things I couldn't bear to do before because I didn't want to accept these changes. It took me months to make the first step towards progress. The first few months were filled with that desire to fix it and get it back the way it was. I guess about five months in, I realized that he was growing...and desperately needed me to grow with him. He was no longer just sitting in the floor trying to get up and move. He WAS moving. I was forced to get off the plateau I was on, and start climbing because he was going with or without me. I was hesitant because that meant picking up and moving on. I absolutely did not want to move on unless that meant "back to normal". We were supposed to wait for the seizures to stop before resuming our lives.


Somewhere along the way, I realized that my constant, obsessive desire to recapture what was stolen, was gradually shifting to the constant, obsessive desire to salvage...to damage control. That was pivotal. That meant I wasn't in complete denial anymore. In no way am I saying that I don't still hope to recapture everything...but, that realistic prospective changed the way I live. It gave me the freedom to be truly thankful for seeing him pick up a pea and put it in his mouth at 16 months old...instead of dwelling on it not coming sooner.


I look at Austin trying so hard to stay balanced enough to run. RUN. That is something that I could not have imagined a year ago. I see him shoveling pancakes in his mouth so quickly that I cannot keep them coming fast enough. I hear him squealing with delight as he makes his rounds in his playroom. Those moments are filled with pure joy only your child can bring you. And for a while I forget.


THAT is progress!



Besides seizures, what has remained the same?


The honest truth?



The hurt never ever goes away for a day.


It's always there, but on those wonderful days, it's kind of dormant. Sleeping just below the surface. On particularly bad days or even weeks, it will erupt. And erupt. And erupt.

But, afterwards I regroup, reevaluate, and dust myself off and put it back to sleep again. Those joyful, blinding moments put it to sleep again.


Life puts it to back to sleep.


And even though seizures are still very much apart of everyday...and that little reminder accompanies each and every one...


And I still obsess over progress and seizure freedom...


Life goes on.



A year of life has gone on.


A year of unsuspecting progress has been made.



I survived! We survived!


I'm not even close to being rock solid. There are still plenty of eruptions. Just not necessarily in a constant state as before.


And, I just happened to notice that life did not stand still for us (or me).


And we did not stand still waiting for life.


We've been going and progressing without my even knowing.


That one day at a time cliche really does make sense.


Something that I have to remind myself everyday. Looking too far ahead is daunting. Especially when every aspect of this disorder involves uncertainties.


And I'll be the first to admit I still don't live life they way I should. I'm a self-proclaimed homebody...


But, just like Austin, I'm taking baby steps to get there!

development-wise

So, I caught you all up yesterday on how Austin's seizures have changed (or not changed)...

Have we seen any improvements with his development over the past year with occupational therapies and (recently) speech therapies, and countless Mommy therapies??


Lets see...


Where we were:

Pre-IS, we had very little concern about his development. I checked, checked, checked obsessively my way through Baby 411's list of developmental milestones monthly (first time mommy...can you blame me?). None of the big ones were an issue -rolling over, smiling, sitting up, laughing, etc. He was progressing beautifully. I was mildly concerned with some of the social behaviors, but he was just starting to reach that age group...pat-a-cake, object permanence, separation anxiety, etc. Although, with pat-a-cake, he was grabbing my hands and clapping with me. He loved to hear me sing to him (I'm sure he's the only one though). He'd jump (in his jumperoo) when I'd sing, JUMP, JUMP, JUMPEROO! He'd squeeze my cheeks and slobber on my nose when I'd ask for kisses...So, my mild concern was just that...I didn't even mention it on his six month well visit. I was, however, thrown for a loop when the pedi asked if he was babbling yet...which he wasn't. He asked if he'd been blowing raspberries because that usually comes right before babbling...which he wasn't doing. He made gurgle noises and that was it (besides the usual baby squealing). I came home from that visit worried. But, he put my mind at ease within a week of that visit by chirping DA-DA-DA and I-DA and DA-DEE on a regular basis. We were back on track!

That was a mere two weeks before the IS started.

During his near five day stay at the hospital, he was considered on target developmentally.

Some skills he had mastered by this point:

-smiling, laughing (it always took much effort to get him laughing)
-rolling over
-sitting unassisted
-transferring object from one hand to the other
-babbling with consonants
-ability to associate small commands with actions -when holding his hands he would jump when you said jump...he would attempt a kiss when asked
-holding his bottle

Within one week of starting ACTH, Austin quit babbling. He went from da-da to a miserable sounding mmmm. I attributed it to ACTH side effects at the time (because I was only prepared for physical delays -pretty clueless, right?). Then came the loss of social interaction and interest in toys. Again, ACTH was the culprit. In my mind, everything would pick right back up after the ACTH days were over. After all, at the peak of the ACTH, he learned how to get from laying down to sitting up independently. If he was doing that, there was technically no regression.

Everything else was side effects...or I thought.

You may notice my so-called denial to the left of this blog in the For Austin section. I noted that he has shown no signs of slowing down. I haven't been able to make myself change that.

There were actually many skills he lost or that were delayed last summer. He would not accept textured foods. He rarely smiled and never laughed anymore. He seemed unaware and totally distant when spoken to...very little interaction/interest with people, surroundings, and toys.

He began standing independently by 9 1/2 months. He never pulled to stand. He never even really crawled. He stood from a bear crawl position.

Slowly ACTH worked it's way out of our lives...but the skills never returned like I had desperately hoped.

He began walking at 11 months.

By his first birthday, I finally accepted the fact that he was really delayed and we didn't have ACTH to blame anymore. He had been off for over two months.

It was extremely confusing for me. I wondered how he could be doing so well in his gross motor skills yet so behind in every other.


Fast forward...


Where we are:

I don't know what age level Austin is considered. In some ways, socially, he seems to be where he was when this started...around six months.

Communication is another big area of concern.

Gross motor and fine motor...fairly good.

Skills he lost:

-ability to interpret small commands and actions. No more kisses. No more jumps.
-babbling with consonants
-communicating his needs
-interest and social interaction with toys, people, surroundings


Skills he has either regained, mastered, or learning now (since IS):
-laying down to sitting independently
-sitting to standing independently
-walking
-acceptance of textured foods
-chewing
-fine pincer grasp
-self feeding (with fingers)
-squatting
-crawling over objects (pillows, my legs, etc.) This was accomplished just this week after six months or more of practice!
-communicating needs (mainly only urgent needs...still a work in progress)
-gestures (reaching to be picked up)
-clapping (not sure whether it is a social clap or not)
-functioning certain toys
-shaking toys that rattle
-walking with objects
-smiling and laughing (still takes a lot of effort for laughing)
-new sounds although still no consonant babbling
-drinking independently from a sippy cup (another work in progress)
-reaching in an object (slowly learning)
-interest in some toys sometimes (one minute he will belly laugh at a toy -the next he doesn't even want to look at it)

There are so many skills that are delayed. We are so behind that I'm really no longer aware of some of them...trying to focus on our goals.

Which are:

-deliberate transfer of an object (handing me a toy intentionally or a voluntary release like putting his sippy cup down instead of dropping it)
-reaching in and putting back (similar to the above. We are working on putting toys back in a container)
-self feeding with utensils
-dancing (man, would I love to see him do a little jig!)
-gesturing (wave bye-bye, point and grunt for a desired object, shake his head no-no etc)
-speech (I'd be happy with meaningless consonant babbling)
-drinking from a straw or sippy cup with a valve (he will not suck anything but a bottle nipple)
-showing affection by hugs or kisses
-function a toy without mouthing it (this is a BIG concern. He still would rather mouthe a hand held toy rather than play with it)
-comprehend and respond to simple commands (like Come to Mommy, Austin, or Sit down)
-throw an object (like a ball)
-object permanence (look for a hidden toy)
-separation and stranger anxiety (he does not care if I leave the room, nor does he care if someone unfamiliar interacts with him)
-imitating behavior (facial expression, noises, etc)

I'm probably leaving a lot out...but you get the idea. We are very behind.

But, we've come a long, long way!

More than anything, I'd like him to run to me and give me a hug. Or, come looking for me when he needs me to hold him and comfort him. I just want affection reciprocated. That is so much more important than sucking through a straw or throwing a ball.

His comprehension is questionable sometimes. There are times where he seems to "get" exactly what you're saying. Others where his mind seems a thousand miles away. He shows little reaction to words like bottle, paci, Mommy, or Daddy. But, he will open his mouth when I say sippy or bite (when seated in high chair). He reacts to seeing his bottle or paci, but not by hearing the words.

The list of goals is certainly overwhelming. Seemingly impossible.

But, I vividly remember saying that I had visions of Austin feeding himself Cheerios and walking around smiling. After last year, it honestly seemed unattainable.

But, it's an everyday reality now. One that I have not once taken for granted...nor will I. I still get tickled watching him feed himself. LOVE IT LOVE IT LOVE IT!!!

And, he is truly a happy little boy. Nothing pleases him more than walking or getting his arm rubbed! He has the most magnetic personality which has started peering out through the meds lately. His energy comes and goes depending on which meds he's on, and it's always a gift to see his chipper little self again!

We are taking baby steps toward progress. And that's certainly better than no steps at all!

seizure-wise: follow-up

Have we seen any improvement over the past year with the injection meds, liquid meds, tablet meds, capsule meds, or dissolvable meds?



Well, let's see...



Where we were:



May 29, 2008, kicked off this endless list of meds. Austin was given his first injection of what we thought was "liquid gold," aka ACTH. Although extremely helpful in some cases, it was 12 wks of sheer HELL for us. It only seemed to make clusters more frequent, more intense, and much longer (not to mention agonizing side effects -none serious, just extremely inconvenient). It very well may have been that it had no effect, and the IS was just progressing. In any case, Austin was having anywhere from 30 spasms to 170 spasms per cluster (x 4-7 clusters per day). So intense that he'd get little goosebumps, and the hair on his head would stand straight up as if we'd rubbed his head with a balloon. He'd grunt, his eyes would water, and his arms and legs would almost always extend outward (only if laying down). If sitting up, the force would nearly knock him over.



Over the following months several more AEDs were introduced.
(In order: zonisamide (Zonegran), Keppra, vigabatrin (Sabril), valproic acid (Depakote), Banzel, clonazepam (Klonopin) -this is our entire AED list since ACTH.



We went from nasty, chill producing clusters to almost no clusters -but new forceful body dropping seizures began.



Then, back to lighter, more subtle clusters + lighter body/head drops.





Where we are:



He may not grunt or "crunch" when he has clusters anymore, but they are certainly just as prevalent as they were one year ago. The number may be down per cluster, but that old feeling of not wanting to wake him because I don't wanna see seizures is back and just as strong.



Drops are somewhat easier on him, but not enough to eliminate the need for a helmet.



We are currently on three AEDs: 300mg zonisamide, 9ml valproic acid, and 0.375 mg clonazepam.



It seems as if we've made a full circle. We started with clusters and only clusters. Over time, those faded and were replaced by drops. Only now, they are back with a vengeance...not to mention the drops. On the upside, almost all are lighter in intensity than before.



One fact that has always been consistent is that there is no consistency. Regardless whether or not we're trialing a new AED, Austin's seizures fluctuate frequently. One day he may have 25 (that's a good day) and the next he may have in excess of 100. For a brief period of time (maybe 2 months), we would see them as low as 10-15 a day about every other week -again still not consistent.

Looking at the entire picture, seizure-wise, it doesn't seem as though we've made any progress.

Other-wise, that's another blog...

Fun in the shade

We finally had cooperative weekend weather. I've been waiting for weeks to pull out the pool and see some splashes! As outta control as Austin's been in the bath lately...I knew this would be entertaining. Only I didn't get many smiles or even glances on camera. He was in action and extremely focused on the water! I did get some giggles and smiles on video though. He'd be splashing away and suddenly throw himself backwards (Chad had to hold him by the arms to keep him from going under) and kick the heck out of the water! It was exactly how I imagined it would be! This doesn't happen often. He usually reacts the opposite of what I expect.

We slathered on the Waterbabies, donned the sunglasses and headed into the...


SHADE!!