Tuesday, September 30, 2008

Zonegran going up...cross your fingers!

One of my older favorites...he was about 3 mos old

I called the neuro this morning for my weekly report on Austin...and holy cow, she called me back within like 10 min!! I was stunned. She's FINALLY increasing the Zonegran...maybe due to my stern email that something had to be done...NOW! Don't get me wrong, I don't want my baby doped up to the max, but that is the ONLY thing that has shown ANY results since we started treatments. His spasms are out of control and if that's what might bring them down a little, it has to be done. So, we're up to 150mg/day (from 100mg/day). He has certainly shown improvements in the past with this one, so maybe he will get a break for a bit if nothing else.

Can't remember if I mentioned before that we are trying to get an appointment with an epileptologist, but I've got news on that one too. Finally got one scheduled...for January...can you believe the wait? That's with a cancellation too. It would have been March! I'm doing everything I can to get him in sooner, but my resources are limited. Just crossing my fingers that he will get bumped up before then somehow.

The good news is that even with all the extra spasms he's been having, he's still trying to keep moving! It's so funny to watch, he gets up, sees something interesting, and screams and looks down at his feet as if he's willing them to move! Go feet, go!!! He's so determined too...he'll take a couple steps, fall down, get back up...take a couple...fall...back up!! That's our day!!

Sunday, September 28, 2008

Gotta love a Friday night in the ER...

Austin and Daddy in the ER

WARNING: Those with a weak stomach (Erin!)...look away!

We've had quite a share of mishaps over the past couple weeks. Need I mention Ike? Oh, then the double-whammy ear and eye infections...followed by diarrhea from the antibiotics...a rise in spasms...could we handle any more surprises??? Ahhh, but just to test our patience, we were thrown another curve ball...a two day break in diarrhea only to be followed by even more mysterious poo! I tell you what, if some ever told me I would be a poop-inspector when I had a baby, I would have fallen over. Can't you just picture me, foul diaper in hand, squinting to inspect the smelly contents?? That was me on Friday. I will give you the condensed and edited story...

So Friday morning began with a recurrence of runny poo...no big deal, just needed a little more time for the antibiotics to wear off, I thought. Then a couple hours later, I found myself frantically calling his pediatricians office asking them if I needed to call an ambulance to come get my baby. I'll spare you the gory details, but to say the least, it was quite a scary diaper...okay, so I have to give you one yucky detail...a bit of blood, mucus-ey, and ohhhh the smell! The nurse I spoke to calmed me down and told me to patiently wait while she talked to his doctor. She said that since he was otherwise fine (no fever, no apparent abdominal pain, no vomiting, etc), that I could just come get some specimen cups for stool samples and bring them back on Monday. Ugh, the thought of poo being preserved in my fridge next to that box of leftover fried chicken...yikes! But, anything for my Austin...obviously!

To make a long story short, when it came time to take the sample, I was blown away at the amount of poo they needed! I had three different cups and a card to smear it all in, but there was a problem...not enough of it to go around! I ended up calling the on-call nurse, which based on protocol, she referred us to the ER.

Yay, our third ER trip in less than six months.

Thankfully, they were able to use some of the samples I had taken and ruled out any developing infection. And after about 7 hours in the ER we were finally released and ordered to have a follow-up visit with his pedi on Monday.

I'm relieved to say, it all seems fine for the moment. The doc says it may have been related to the antibiotics since it's not an infection. And, for the time being, I get to keep inspecting poo to make sure it's still normal.

Ahhh, motherhood!!! Gotta love it!


Thursday, September 25, 2008

Go Austin Go!!! 11 months today!

11 months old...and taking his first steps!
Going to get his lion!

I've got an awesome update for you all!

Remember the other day when I said that walking would be coming soon????

WELL....He took his first steps last night!! Yeah Austin! One day before turning 11 months! He's been doing the one-foot step for, oh, about a week now. He'd step with one foot, but couldn't quite shift his weight do step with the other one. I tell ya, he does great things after his occupational therapy! He got the hang of his standing the evening when Miss Brenda (his therapist) came. She came again yesterday, and, low and behold...

She told me it seemed to be the weight-shifting that was holding him back, so she showed me a couple tips on how to help him out. I guess it worked! He's not walking all over the place, just about 5-6 steps at a time, but maybe that's how they start?? I don't know, this is my first experience. I wouldn't expect them to be immediately running around...

Anyhoo, I couldn't be more thrilled! I don't care if he is about to be getting into everything! My baby's starting to walk!!! :)

I was so surprised because yesterday seemed to be one of the worst days for him and his spasms in a looonnng time. They were coming right and left. I was all over the place trying to figure out what triggered them to increase so much. His neuro called me back on Tues and said any type of illness (he had an ear infection) would increase them. But, I took him back to the pedi that same day and she said we could discontinue the antibiotics because his ear looked fine. It seemed to be coming out of nowhere. I ended up trying to get in touch with the epilepsy clinic to get him an appointment with an epileptologist. What a nightmare! I got transferred about 6 times and never got anything accomplished! I'm still waiting on the "scheduler" to call me back. I also did some digging and found some email addresses, so hopefully that will get me somewhere too. I am desperate to get a better doc to treat him. I'm just crossing my fingers that the wait to see one won't take months and months...

His current neuro shot me down again on the Vigabatrin topic. She said AGAIN that it will only benefit children with symptomatic IS (where there is a cause for the IS). So, I got on my trusty web group and threw that question out there. The response was phenomenal...There were so many parents that told me it helped their children...even ones that HAVE NO KNOWN CAUSE!! Some even said it worked with the first dose, or in four days, or the IS has been resolved for 3 and 4 years...I honestly think her (the neuro) lack of experience is why she won't try it. She won't even increase the only med that has been proven to help his spasms (Zonegran). I know for a fact that there are babies smaller than Austin on higher doses. She even said herself that an epileptologist may be more comfortable with increasing it. She wants to keep increasing the Keppra instead...the one that has done absolutely NOTHING!

I think our best hope is to find someone else...regardless of whether or not that doc will prescribe the Vigabatrin. Austin deserves more.

Monday, September 22, 2008

A little more uplifting!! :)

As usual, when I make such a dramatic post, I start wishing I would have contained myself a little more! As this day has rolled by, I have improved my attitude a bit. I'm still pissed that the neuro is too busy to return my phone call, but Austin has been happy most of the day and that has made a world of difference.

So...I thought I'd share the story of my quest to hear Austin's "da-da-da's" with you! :)

For any of you parents out there...Have you ever taken any milestones for granted? I mean, you know they're a big deal, but you don't capture them the way you'd like? I certainly did.

Before Austin's IS started, I was obsessed the that dang Denver Development Chart that was in my trusty Baby 411 book...my survival guide to first-time parenting. Every new month that rolled around I was pulling it back out and checking the milestones off as he reached them. Rolled over by four months...check. Sits independently and transfers objects from hand to hand by six months...check, check.

Then came the consonant babbling at the six month mark. He wasn't doing that yet. Even his pediatrician voiced a little concern, but said he'd still be well within the "normal" range as long as he was doing it by nine months. To my relief, within one week of his six month well-check he was babbling up a storm! All we heard was "da-da-da" and "daa-dyyy"! It was music to our ears and we couldn't hear it without chuckling a little. After that, I decided to chill out a little on that chart and trust that everything comes with time...after persuasion from my mom, of course!

So why didn't think to purposely get that on video? Don't know. It never occurred to me that he would only do it for three weeks. I thought I had all the time in the world.

He stopped the babbling about one week into his ACTH treatment. It didn't really dawn on me at first. I remember riding in the car with Haley and we were talking about this new sound he was making, "ummm". I had commented on how I thought he may have been learning his "m" sounds. After I thought about it a minute, I realized he hadn't been doing his "da-da's" lately.

I haven't heard it since.

So, the other day I became bound and determined to search through all of the relevantly dated dvds to find that "da-da" captured on something. I knew I hadn't sat down with the camcorder to specifically record that, but I thought maybe I had gotten it and not realized it. Finally, after hours of videos, I found it! It was such a short clip...but I heard it again. And I cried. I didn't cry because I didn't think I would ever hear him do it again. I cried because I missed it and didn't realize just how much.

It's amazing some of the things that I took for granted, thinking that he would always be doing them. Most everything is still is doing. And he's doing even more now! Now, I make sure to catch it all. Got him sitting up, crawling (even though he doesn't do it much), standing...Next up...WALKING! Can't wait! It's coming soon!

Enough Already!!!

When I posted yesterday, it was a normal, typical day for Austin. Of course, he was having his usual number of spasms, but I've learned to deal with them as part of everyday life...no, that doesn't mean it doesn't bother me, but I've somewhat accepted the fact that it happens. Every single one makes me cringe, but then we move on. The fact that Austin usually smiles afterwards, helps reassure me that they aren't "hurting" him...I mean "hurt" in a short-term, physical sense. I know they don't cause him physical pain when they are occurring. He sometimes has the mild ones where if you didn't spend much time with him, you would probably never notice. Sometimes it only involves a slight quiver of his bottom lip...but Mommy knows!! Then there's the full-fledged slams where he thrusts his entire upper body down with a lot of force. Those are the ones that will do some damage.

So, last night I was buzzing around the kitchen chopping, cooking, and so proud of the bubbling dinner I had on the stove. Austin was scooting around in his walker and I was singing along to the radio. It was an ideal Sunday evening in the making.

Then came the SLAM...Now, I have the toughest little boy I've ever known. He's been known to make a "slam" onto the toys attached to his walker and look up and smile at me. This time was different. It was so quick I couldn't even tell where he hit his head. There was instant screaming, followed by a moment where he couldn't even catch his breath. I felt like crying right there with him. I realized he hadn't just bumped his head. It was his eye. I kept looking and looking last night just waiting for a black eye to appear. Nothing so far, thank goodness.

That was the final straw, so to speak. I am furious. I will become his neuro's stalker if I have to! If she will not prescribe the Vigabatrin, I will find someone that will.

UGH!! Enough already!! I'm tired of these spasms ruining what should be normal activities...he can't stand near a coffee table, he bonks his head on restaurant high chairs, he can't crawl or sit on anything but soft carpet or a bed, he can't have anything but soft, plush toys in front of him unless someone is holding him...and it makes me a nervous wreck thinking of him standing in his crib -which I cannot prevent. There's no warning, no predicting when these things will hit him. It's dangerous and it is taking away from him doing the normal things a baby his age should be doing.

What am I going to do when he starts walking?? Confine him to a padded room??? I can't bear the thought of him walking around and BAM! fall onto the hard floor. It's not the usual anxiety of a new walker...I can't just watch him and say, "Austin, don't do that, you'll hurt yourself!" You just don't see these things coming.

Look at me...I'm trying to predict the future again! I tend to do that...assume that this or that is going to happen and what I'll do when it does. I've been wrong about a lot since this started. One valuable lesson I've learned is that you have to take everything as it comes, because it's impossible to prepare for the unknown. That's the tricky thing about IS. EVERY BABY IS DIFFERENT and NOTHING IS CERTAIN. There's no right med or even a right dose. There's no certain prognosis. It's all trial and error...

A parent's worse nightmare.

As a parent, it's only natural and instinctual to want to help your baby. It's agonizing to see your baby sick and be completely helpless.

Guys, I really and truly try to stay positive as much as possible. There are times, though, that I question my abilities and strength to get Austin seizure-free. A night like last night can leave me with such a sinking feeling that I go back to square one emotionally....

BUT, how does that help Austin?

So, I will wrap up my little pity party and quit trying to read my crystal ball! Stressing about the future may be stressing for nothing, right?

Enough already, Holli!!!

btw -Sorry for being a Debbie Downer...just needed to get some of those thoughts out there...it was like my own therapy!! :) From now on, I will try to stick with exciting news and updates on Austin only!! ;)

Sunday, September 21, 2008

Feeling Grateful

Seriously, what a difference one month makes! See the dates on the pics??

While Austin was napping yesterday, I started fumbling through Hurricane Ike aftermath photos online. I was so curious about the damage in Orange and Bridge City...not to mention Crystal Beach and Galveston. Some of the photos just blew my mind. These places where I either visited frequently or did business are literally gone...or unrecognizable. Although it's been a while since I've been to Crystal Beach or Galveston, just seeing those places in that state was heartbreaking. I couldn't get the image out of my head of how I remember it...full of life, parties, beautiful homes and businesses. It truly brought back an unsettling yet very familiar feeling I had about three years ago after Hurricane Rita.

That's when I realized how grateful I am to be able to return home (after getting power of course!) and resume as normal. We weren't able to do that after Rita. It was about six months before we had our house back the way it was (well, slightly improved). Cutting out drywall, disinfecting furniture and belongings, remodeling, and UGH, living in that tiny travel trailer!!! Gosh, I'm sooooo glad we aren't doing that again! I've been getting the urge to take a drive out to our old neighborhood in Vidor to check on everyone out there. I just know they have suffered another flood. I haven't been out there since our old house was leveled either. I'm not sure if I'm quite ready to see what's out there...whether it be the vacant lot where my house once stood, or the piles of debris and moldy furniture on the curbs from everyone cleaning up.

Chad commented last night on how much I've done around the house the past couple of days...I told him that I just feel blessed that I'm able to do that this time around!!! I simply cannot imagine having to rebuild a house all over again with Austin and Bailey.

Oh, this blog is supposed to be about Austin, right? Well...he's about the same on his spasms. No word from the neuro yet. On the bright side, his eye is already looking better and it seems his ear infection is improving also. Oh, and he's sleeping A LOT better now that he's back in his bed and Mommy finally gave him some medicine for his ear! Two nights in a row that he only woke up once! Both were when Chad got up to go to work. Last night was a little more involved than the night before. It took him nearly an hour to get settled back in, but still an improvement! I'll take it!

It's also been confirmed that he's lost a little weight. In August he was weighing in at a whopping 28 lbs, but Friday he was 26 1/2 lbs. Still a big boy, but not quite the little chipmunk anymore! His cheeks are the obvious change so far. Oh, funny story about that...I had to locate another pediatrician to take him to about his eye since his regular one is still not back up and going in Beaumont. I took him to the big town (not really) of Jasper. It was so funny to compare the two! At his normal office (very large -at least five different pediatricians) the nurses weigh and measure him, and then you wait and wait and wait on the big bad doc to make his grand entrance. In Jasper, the doctor actually called him back herself and just jumped on the scale with him to weigh him (I never even saw a nurse there at all)! Gotta love the small-town!! I thought it was great...she was very focused on just him and if her English was just a little easier to understand, I might would consider switching!

Friday, September 19, 2008

Settling back in after Ike

Well, I guess I was wrong. Ike did make a turn for us, but thankfully, we didn't have the Rita-like damage here at home. After a trek across Texas running from Ike, we finally made it home yesterday safe and sound. Poor little Austin and Bailey had two evacuations in two weeks!! After the initial stress of the hurricane and evacuation, we ended up making the best of our time away from home. My precious Mom and Dad toted me, Austin, and Bailey to Fredericksburg, where we took in some awesome German food and a little shopping...Thank you guys, by the way. I don't know what I would have done without you!! Dad and I also got to check out an awesome WWII re-enactment while Mom hung back at the hotel with Austin. I hate that I crashed their already planned weekend away, but I am so grateful that they let me tag along so Chad could stay and work (at least he thought he would!).

So, after returning home -to NO POWER- some wonderful friends of ours let us invade their home (WITH POWER) so Austin could stay nice and cool! Thank you so much Scott, Teresa, and Miranda for making us feel at home and taking such great care of us!!

We continue to struggle with Austin's IS, unfortunately. I think the stress of the evacuation might have affected him because the spasms have really been on the rise. We also just got a confirmed eye & ear infection this morning to top it off! :( When it rains, it pours!!!

I am waiting right now to hear from the neurologist to see if we will be increasing his Keppra dosage. I'm so frustrated right now about that because I haven't seen the slightest improvement since we started it over three weeks ago. I really don't think it's going to be The One. Maybe the Vigabatrin?? We shall see....

Wednesday, September 10, 2008

ACTH -Questcor's ridiculous pricing

This is a little different today. I was reading a post earlier in my Infantile Spasms group about a desperate mother whose son recently had a relapse of IS. ACTH treatment got him seizure free and was a "miracle" for them for 8 months. She has been a vocal advocate on the subject, speaking out against the most recent price increase, and for good reason. A potential cure for many IS babies, ACTH pricing has gone through the roof. A vial that used to cost about $1600 in Aug-Sept of 2007, is now an astounding $23,000!!! That is only a vial. An actual treatment (like Austin's) can cost upwards of $100,000 thanks to Questcor's (manufacturer of Acthar Gel -ACTH) greed.
Danielle is mother to Trevor, 17 months. She wrote this letter to the CEO of Questcor, with whom she has had previous contact (their story has been used as an example of success in their medication) and asked any bloggers to re-post to get it seen by as many people as possible. I, for one, am more than happy to do this as we were just in this position of needing assistance with obtaining ACTH ourselves.

You can read her letter to Don Bailey (CEO/President of Questcor) here


Tuesday, September 9, 2008

Stay away IKE!!!

Austin doing what he loves most -STANDING SOLO!!!
Looks like his cheeks are going down a bit too! ;)

We've certainly been on the edge of our seats lately watching this hurricane. It's looking better and better for us right now, but I doubt I will relax until I know for sure where it's going. I wouldn't be quite as uptight if we wouldn't have had to evacuate just a week and a half ago -FOR NOTHING! BUT, I'm betting it will be fine and then we'll breathe a HUGE sigh of relief! :)

Another thing keeping us on our toes is our Mr. Austin Man! At the rate he's going on his standing, I wouldn't be surprised if he started walking soon! I just can't tell you how thrilled I am about this. Everyone keeps telling me I'll be eating those words once he's up and about...I doubt that. I will NEVER take those milestones for granted. I have my camcorder charged and ready to go at a moments notice!! :)

The spasms are about the same still. Some days are better than others, but he has at least 20 on his "good" days. Very frustrated, very impatient... The best thing I can say about them is that the Keppra and Zonegran have definitely lessened their intensity and frequency. When he's having a "bad" day, I have to remind myself where we were just a couple of months ago. He was having 5-6 clusters a day with some containing up to 50-70 spasms...making the grand total for the day nearly 200 spasms. Now, a "bad" day consists of 50 spasms. It's not where he needs to be, but it's an improvement at least.

Hopefully, I'll be checking in more often, providing Ike leaves us alone!

Thursday, September 4, 2008

Nothing new

This was last night -he was playing with his food!

It has been a while since my last post...I've been waiting on good news to report. Nothing has really changed. His spasms are still present and there hasn't been much fluctuating since we added Keppra on Saturday. I was so hoping to be able to tell everyone that it worked. Unfortunately, we haven't seen much of a change at all. It looks like we will be increasing it tomorrow. The neurologist told me last Friday that we are starting at an extremely low dose, because the fewer risks to reach effectiveness the better. That makes for a long wait, I'm afraid. I really don't know if I have the patience to wait this one out. He seems to be doing well on it (no major side effects to note), but I just want to get it over with! I guess we will wait for one or two more increases, but I'm really starting to lean more towards the Vigabatrin. It works so quickly that I can't see why we shouldn't try it. The neurologist was really opposed to it when I first mentioned it (due to a slight risk of peripheral vision impairment), because she was very optimistic about his current condition and the likelihood of lower risk meds working. As she told me after his EEG, if the Keppra does not work, we will most likely be referred to an epileptologist. I think that validates that we are running out of options. Why not try it? Yes, it will be costly (non-FDA approved, therefore not covered by insurance) and it carries some risks, but those risks aren't nearly as severe as letting the spasms go uncontrolled. That's my thought, anyway.

On a better note, Austin is still progressing well. He's standing ALL THE TIME and balancing longer and longer! He's even able to take tiny steps here and there without falling! I wouldn't call them real steps, but he's able to move his feet a little without completely losing his balance. Everyday, he gets a little better! Still hasn't gotten back to babbling since he quit after the start of ACTH, but he can still be very vocal! I can't wait for him to start that back up. I think he was only consonant babbling for about 2 wks when he quit. I wouldn't even mind da-da-da!!! ;)

Just spoke to our neurologist. She is increasing his Keppra from 2mL/day to 3mL/day. I'm frustrated that she was so eager to end our phone conversation. She said she was calling our pediatrician to check on last weeks labs, so I thought I would be hearing back from her soon after. An hour later, I'm still waiting. As his mother, I would kind of like to know the results myself!!! Ugh...doctors!