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.

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!!

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.

Actually....it 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. Shaking...no 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 tidy...as 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.

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 helping...it'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.

Recharge

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 basis...so 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!!!

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 else...so 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 quiet...it'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 hard...like 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!

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!