Unbelievable!

I just couldn't resist the urge to tell you all what ended up happening with the epilepsy clinic and the helmet ordeal...

I decided yesterday to give them the benefit of the doubt. Instead of stalking them by phone yesterday wanting to talk to someone, I tried to be patient...to see if they would actually call me back. Well, of course they didn't yesterday, so I kept my cell on the nightstand last night in case of an early am call. Still nothing, so I called back at 9:30.

The lady who answers looks up our info and says, "Oh, she mailed you a script for the helmet."

Seriously??

Seriously?

Unbelievable...

The last thing I was told yesterday when I called was that someone would be calling me shortly to discuss our options in helmets. Hmmm. I guess they just assumed that I would wait patiently while my child is constantly hitting his head and just figure it out when we got the script in the mail! That still doesn't help me much.

I could go into a lot more detail on this one and why it's making my skin crawl, but I think you all get my point without all the nonsense.

Bottom line...

Those people are unbelievable! Eeerrrr.

We gotta get a new team!



BUT, besides all that...

Austin is doing well. We had our first increase of the vigabatrin last night. I haven't seen too many spasms...Maybe 3 or 4 so far. It's close to 11 am now, so we will see as the day progresses. So far so good though!

I think he's cutting several teeth right now which is making him SUPER loud! He's trying to tear into everything in sight! So funny to see him try to stick his whole fist in his mouth!

Unless something major happens between now and Friday, I doubt I will have a chance to get on here much. We're doing 2 days of Thanksgiving! Why didn't we start doing this sooner?? Oh, wait because of me! Miss traditional (me) just couldn't stand to have turkey on any other day but Thursday! Now, I'm thinking how much easier it's going to be on everyone to divide it up. No having to eat and run on to the next family!

So, Happy Thanksgiving to everyone! And forget about those diets!!

Bubble Boy

Yet another boring-post-day. Nothing...Nada.

Spasms are a little better amount-wise...but intensity...Whoa. He hasn't walked solo since about 11 am. He had a slam on the carpet and that was enough for me. He cried, I cried, and our social worker almost cried. It just breaks my heart knowing that it's dangerous for him to do what he loves most of all. Walking.

So, I got busy trying to find a protective helmet immediately after the social worker left. I called the insurance company first. Then the durable medical supply places. Then our epilepsy clinic (for recommendations). Then got online to check them all out again. Everything is set for when we actually choose the one we want...After we get a recommendation and certification from the epi. So, surprise, surprise, that's the only thing holding us up! No call back...as usual.

I'm giving it until noon tomorrow and I'm going to use my best judgement to order one. The longer I wait on them, the longer it will take to get the ball rolling. I probably know better what he needs anyway. I'm the one who knows exactly what gets impacted on falls...I just thought it would be helpful to have someone with experience recommend a good one. There's several to choose from.

I'm not giving up yet on the vigabatrin, but I'd like to be prepared if it doesn't work. I've already cleared out all the "problem toys" that make me a nervous wreck for him to play with. I thought that would calm my nerves a bit. And it did...until he started hitting his head on the floor so hard. Now, he's back to being "bubble boy". That's what I need...bubble wrap for every hard surface in the house...hmmm.

Anyway, he's been such a sweetheart today despite Mommy being so controlling! I've been getting tons of smiles and giggles! He's coming around in that department. Much more interactive. So good to see...I missed that so much!

Madie and Trev, I'm thinking of you two!

Thank you!

Just a quick post to thank a couple people who have kept me sane today...

Mom, thanks for the encouragement to keep it going despite the fear. Not one tear shed since we spoke.

Jen, thanks for sending me to Connor's site. What a fighter! What a strong Mommy she is too. It made me realize how much I need to focus on what he IS doing. My Austin IS rolling over...he's WALKING! He's not seizure free, but he's an active, happy baby despite all the seizures. Yeah, he's delayed in a lot of areas, but he's starting make a little progress here and there.

We WILL make it through this. If vigabatrin's not the one, we will keep searching until we find THE ONE.

Maybe tomorrow

Sorry so long since an update. Honestly, I haven't really been in the blogging mood. The new pressure of the vigabatrin trial has been seriously taking a toll on me.

I can't say one way or another if anything is happening yet. One day spasms are low and he's in a great mood...the next is the complete opposite.

It's been 6 days so far. Nothing to celebrate yet...I'm trying to be patient and remember that 3 days, 5 days, and even 6 days is waaaay to soon to start making assumptions. But, there's still a part of me that's disappointed that it's not making any difference yet. I wanted so bad for him to be one of the ones it helped in 2 days. If anything, after 2 days they were worse...then better by day 4. Now, today, they're worse than they've been since we started. 67 in 2 1/2 hours. That's with a baaad cluster of 55 though.

So, it's too soon to report any major news. Every day is different. That's why I didn't update when he only had 20 one day (which for some kids that would be a bad day...for him it's pretty good).

We are trying to take it one day at a time, and this day stinks.

Maybe tomorrow.

The Million Dollar Question

I really don't remember exactly how it started. The debate Chad and I got into over immunizations and the link to Infantile Spasms. Did the DTaP play a part in Austin's seizures? We may never know. But, I certainly have my own ideas...whether they'll ever be confirmed...don't know.

I don't necessarily think that it caused it. I do believe it triggered it. I wish I could say that I knew for a fact the vaccinations caused it. Then, I would have someone or something to blame it on. But, I don't know that, so for now, we will just have to continue to be cautious with future vaccinations. Like I said in an earlier post, we did not get any one-year vaccinations. We may end up getting all but DTaP later, but I doubt we will ever get pertussis again.

Of course I want the secret to curing my baby's seizures more than anything. But, what I also want to know that would maybe put my spinning mind to ease, is a cause. Any cause. I want to know why my perfectly healthy, happy, developing six month old suddenly started to seize. Why our lives were suddenly turned upside down and inside out. How one day he was perfectly fine...and the next a child with epilepsy. We may never know why, but that's okay...as long as it stops.

So, with that being said...We have a new drug in the mix as of today! Yep, we FINALLY got it started. We're starting slow and going to work our way up to a steady dose within about three weeks. I'm holding my breath until then...

Thank you all for your support and encouragement! It was nice to hear from Janna and Alana! Thank you two for your prayers and sweet comments! It was great to hear from both of you...it's been years! Hope you are both happy and doing well!

Hopefully within the next week or so I will be able to report a dramatic decrease in spasms! Until then, please keep little Austin in your prayers. We really need this one to work!

Beyond Words

It's here!!!! The vigabatrin is here!! (Ali, you were right!!!)

Now, the only problem...getting the epilepsy clinic to return my phone calls! I've been calling since 11 am this morning to get them to fax an updated script to our pharmacy...insurance won't cover the Zonegran refill until they confirm that the dosage was increased by the doctor. That's about right. I've called them about 6 times today. And just now, I realized that it's getting near 5 pm...I hurried to call them again...they're closed! Go figure. No word...nothing. I told them when I called the last time that I needed dosing instructions on the vigabatrin too. What kind of hospital is this? I was simply needing a nurse to call me! It takes like five minutes! C'mon!

Ridiculous...

But, I will definitely keep you all *posted* on this one...If it's gonna work, I hope it works fast! Man, wouldn't that be awesome!!! I'll let you know...IF I ever hear back from Houston!

Antsy, Pantsy

Okay, now...c'mon...


We're going on a week now...


What's the hold up?


Surely it's not STILL sitting in NY!


I'm crossing my fingers that USPS is merely failing to update tracking info for the vigabatrin that's supposed to be on it's way to us. No news since it arrived in NY on Nov. 9. I'm not familiar with international shipping and how the customs procedure works...Hope there's not a problem there.

Al, with her optimism, tries to reassure me that it's only a technical glitch...that it's on it's way and will show up at my door any day now.

I can't take the suspense any longer! Now that we have other avenues to pursue, I'm ready to get this stuff going. I'm dying to find out, once and for all...if this is it. THEN, I will know whether or not to cancel the MRI in December and make an appointment in Detroit. If OUR hospital can't get us in for two months, I can't imagine what the wait must be like for Dr. C's! BUT, that's only if the vigabatrin doesn't work. SOOOO, we need that stuff NOW, so we will know by then. These seizure meds are always a test of patience to give them time to do their thing...it takes dosing tweak-age, time, and sometimes even creative cocktails of different meds before you really know. I just hope Mr. Doom and Gloom ES guy knows his vigabatrin!

AH-HA!

I just wanted to give you all a quick update on the latest...



For some reason I just had a sudden urge last night to email the most sought after neurologist (for Infantile Spasms) in the world for his opinion on my hunch. I left out no details as to why I've been suspecting a connection with Austin's spasms and the left arm dominance.



And within hours I got word back...Can you believe that? Probably the busiest pediatric neurologist in the country responds to me quicker than Austin's own doctor (who really uses his nurses to respond).



He agrees with me. He believes that what I told him does suggest a focus. He said that would explain Austin appears to have a sensation in his right hand. Why the left arm is dominant. Why there is movement on the right side during some seizures.



Although nothing is confirmed through testing, I just feel a huge weight lifted off my shoulders. Nothing has changed, but somehow I feel better. Maybe because I don't feel so much like a lunatic anymore. This man agreed with me. Our nurse would barely even listen to what I had to say when I called about it last week. I seriously think she used her own judgement to determine what to tell the ES and that was that. When she called back, her response was no where near relevant to my questions.



I'm still in the process of collecting videos of Austin's seizures and writing a letter to send the ES. I want to know, without a doubt, that he gets all the accurate, unfiltered information and can even see for himself (as opposed to the nurse deciding what SHE thinks is important). Since I have gotten validation from the IS guru himself, I will know that if he dismisses me, I need to dismiss him!



Dr. C recommends that we go ahead with the vigabatrin. If it works, nothing more should be done, but if it doesn't, he wants to evaluate him in Detroit to see if he's a surgical candidate. Surgical? Scary, I know. I've tossed and turned over this one many times...even though we've never even discussed surgery as a possibility. But, I'm sure many parents dealing with this must secretly hope their child could be a candidate. That would mean possibly an end to this nightmare...a possible cure...possibly a relatively "normal" life...Could I do it? Could I let someone do that to my baby? If it meant his chance for seizure freedom AND a normal life...



That's not a decision that I can give you the answer to now. Even after all the articles, books, and success stories I have read. The fact is, EVERY case is different...which means different associated risks for every child. I can't even begin to fathom what an excruciating decision that must be to make.



I am just praying that this vigabatrin works, and we won't even be faced with such a decision.



We will just have to cross that bridge when we get there.

Epilepsy Awareness Month

I found this on one of the blogs that I follow.


Dear Friends,



November is Epilepsy Awareness Month and we need your help! As you know, we're asking all Americans to sign our epilepsy petition (http://www.epilepsypetition.com/).



Our goal is to collect 100,000 signatures by December 31, 2008 to present to our elected leaders. That would definitely send a message! So far, we've collected 10,000 signatures online.If everyone that signed our online petition collected just 10 signatures, we'd reach our goal! Will you take a few minutes and collect 10 signatures in the next couple weeks and help us reach this amazing goal?



Collecting signatures is a great way to raise epilepsy awareness.The more we talk about epilepsy, the more we educate the public. So come on! This isn't going to happen by itself! We need to make it happen! Collect some signatures and help us make a difference!



You can obtain a copy of the petition by clicking here .



If you have questions, comments or want to get more involved please contact me at the email address below. Many thanks for your support!



JoeJoseph
LaMountain
Director of Grassroots Advocacy

Epilepsy Foundation
8301 Professional Place
Landover, MD 20785

jlamountain@efa.org

It's on it's way!

Man, I was on such a roll last week...three posts in three days! What happened?! LOL

Well, doctor appointments, more eye injuries (my own this time), and (sigh) the never-ending computer issues happened! :)

I took Austin in for a follow up with the gastro doc...we saw the nurse practitioner -which was fine because I could actually understand her! We're going to stick with the yogurt and get another stool sample to make sure the bacteria is gone...it's one of those highly resistant little boogers. Then, a follow up in 6 wks. She also suggested we try to gradually switch Austin to a milk based formula (from soy) before introducing whole milk. He's not digging that one so much! I have to mix it in with his soy or he gags. yuck...

I think I mentioned in my last post that I still hadn't "seizure-proofed" Austin's crib. Well, as you can see in the pic, Mom and I finally came up with a quick fix...egg crates and strips of fabric! It's obviously not completely seizure-proof, but it's much better than before. Since it's a sleigh-type crib, the wide (and solid) strip of wood in the front made me an absolute nervous wreck. When he would wake up at night, I could just picture him standing there holding on and having one of those slams right into it. It got so bad to the point where he spent most nights with me on the couch or in my bed. But, I'm happy to report that since Nana fixed him up, we've been sleeping through the night again...most nights anyway! :)

I'd also like to mention that I received an anonymous comment about opening Austin a PayPal account for medical donations. It never crossed my mind and I wouldn't even know where to begin to do that (I'm technologically challenged!)...But, it really touched my heart just knowing that there is a supporter out there that thought of this and wants to help my Austin. I'm so thankful for all of these people (even if I don't know who you are!) that pray for us and offer their assistance everyday. It's the support system that cushions us during this difficult experience. I've received encouragement and prayers from people I've never even met. I'll never forget the day I received that special card and prayer in the mail right after Austin was diagnosed. People that I had never met (who learned of Austin's diagnosis through prayer group) from all the way in Tennessee, gathered to pray for my family. Then not too long after that, I received a precious hand-made quilt from the same family. I remember that day vividly. Man, I was distraught over everything. I was realizing the ACTH wasn't working and probably not going to, Austin's spasms were through the roof, and I was an emotional basket case! Just as if He knew what would lift me up at that particular moment, that package and letter came. It brought tears to my eyes. That is true generosity. We also received another prayer quilt from a more local group as well. Just beautiful. It may not seem like much to the people doing these things, but to us, it's the world. I seriously can't imagine how we would be coping without the encouragement and motivation we've received from everyone. Thank you. Thank you. Thank you!

_________________________________________________

I am anxiously awaiting the arrival of the vigabatrin...which, as a matter of fact, I just learned has made it's way to NYC from the UK! I tell ya, I can't quit checking for tracking updates! I had a dream last night that it worked. A sign? Maybe. Or possibly just my obsessing over it? Probably! I'm trying to be realistic about this one. Although I'm eager and excited to get it going, I'm not going into it as naive as I was with the ACTH. I didn't even entertain the thought of it not working...and it was beyond devastating when it didn't. I know this time around that it might not be our "miracle drug". But, what do I have if I can't at least hope that it is "the one"? Hope is what keeps me going. I search endlessly for signs that it's going to be over soon. In reality, they may not really be signs... But, in order to stay positive, I assume that they are. It gives me strength and energy to keep fighting this battle. An example...I have a 3-D ultrasound of Austin framed in my living room. In the background of his face, it looks like another face to me. That's my comfort. I look at that when I'm sad or overwhelmed or feeling negative. It reminds me of an angel watching over my baby. It gives me hope.

An eye sore...

The culprit

And with all my "safety rigging", man, what an eye sore -literally.

We had yet another accident today. After last Friday's cut on the eye, I was confident that all of Austin's gear (besides his crib) was now seizure-proof. The lovely walker in this pic (yeah, look harder, it is a walker -kind of hard to tell with all my add-ons) has been quite a challenge. With the attached toys on the tray, it took me weeks to figure out an appropriate "fix". The hard plastic toys (under the attractive purple hand towels -lol) have been a problem since the head drops started. Short of sawing them off (which would leave jagged edges), they aren't going anywhere, so I sought out a way to wrap them for protective padding...something that Austin couldn't pull off and that wouldn't pose another risk. The hand towels and hair scrunchies worked like a charm...until today. Somehow he managed to hit it in just the right place, causing another cut on his other eye. I wanted to cry and scream right along with him, but I miraculously kept my cool. I'm just so tired of worrying about injuries! I found some protective helmets online last night. Chad and I are considering getting one. They are definitely not cheap, so we are going to wait and see if the vigabatrin helps any before buying one. I'm not sure if our insurance would help in paying, but I'm hoping we won't need one at all soon.

To follow up from yesterday's post...I finally got a call back from the nurse this morning. Well, she called at 4 pm yesterday but just to get the info to talk to the doctor. I didn't get the call back with the doctor's opinion (or lack of opinion) until this morning. What a joke. I seriously don't think my questions and comments were relayed accurately. All I got from them was the appearance changes over time. Another bit of garbage she told me was that it sounds like tonic-clonic seizures to her. To her? Who cares what she thinks! I'm not paying for her opinion! Anyway, I said I caught some seizures on my cell phone and wondered if I could email them...Nope. I have to send them by mail. She said not to email or fax any more than we have to to limit personal info "floating" around. UGH! No, I think it's to make just as difficult as they can on the parents. I'm going to buy a fax machine today so I can fax my questions and have the doctor read them himself. They're just going to have to deal with it. I'm also going to "mail" Mr. Epilepsy Guy a letter just as soon as I have time to type one! How am I supposed to address my concerns when we only have appointments every 3-4 months? They certainly don't give me adequate info between visits or keep communication a priority. I hate hospitals!!

I got some kisses! xoxo

"Checking" his hand in both of these...

I got a BIG, slobbery smooch last night from my baby boy! It's the very first one I've gotten in probably five months! He gave Chad about 4 or 5 the other day, but when it got to Mommy's turn, Austin started being a cranky little crab, leaving me sugar-less. It didn't bother me so much because just seeing him give kisses to anyone again brought tears to my eyes. It reminded me of when he first started doling out smooches months ago...he'd stand up in my lap, grab me up by my cheeks (which could be painful little pinches -but totally worth it), and plant a big wet one on me! He stopped doing that for so long...I missed it more than you can imagine.

I'm impatiently waiting right now for someone to call me back from the epilepsy clinic...I'm starting to piece some bits together that could potentially be extremely significant. I know I've talked about Austin and his preference for his left arm. It's becoming even more obvious that there's definitely something to this. I've wondered since I first noticed it a month and a half or so ago, if maybe there's a focus that can be identified. For those of you with limited knowledge of seizures (that's me too -but I'm learning a little more), there's two classifications: partial and generalized. Within those classifications there are different types (too many to list). Austin's seizures are considered generalized myoclonics. Generalized meaning the whole brain is affected, and myoclonic being the type of seizure ("muscle jerk"). It is hard to determine the focus (where in the brain the seizure originates) in generalized seizures, probably because it spreads so rapidly throughout the brain -as opposed to partial seizures that involve only certain parts of the brain. I'm certainly not going to go through all of the details because it is very complicated...I just needed to explain the basics so everything else will make sense. Generalized seizures are more difficult to control, particularly myoclonics. If an affected area in the brain cannot be found, then the treatments are limited -namely surgery. With Austin, I'm starting to wonder if maybe there's something to be found in the left side of his brain (left side of the brain controls movements on the right side of the body). I also just read that speech is typically located on the left side of the brain as well. He had a looong cluster day before yesterday...only his right arm and right foot would move. He's always, always, always "checking" his right hand. He brings it up in front of his face and holds it with his left as if he's getting a some sort of sensation. Not only that, he tends to prefer using his left arm/hand for everything. Sometimes he keeps his right arm plastered at his side as if can't use it at all (I know that's not the case because he does use on occasion). All of that combined with the fact that we first started noticing him grabbing his right hand around the time we first noticed the spasms. I did not connect the two until very recently. We thought it was cute, him grabbing his hand...it looked like he was checking his pulse! I remember him doing that in the hospital and he had just started doing it. Only when I started thinking something was strange about it, did I realize how long it had been going on. Quite a coincidence...Anyway, I didn't mean to get into so much detail. I'm just soooo curious as to what this may mean. It could give us the insight we need to explore certain areas. It could be Him giving us a direction. Or...I could be misinterpreting and it could mean something devastating. I certainly don't know enough about the anatomy of the brain, or epilepsy for that matter, to draw my own conclusion. Call me back people! I just want to know what this doctor may suspect...some possibilities anyway.

Well, there's my ramble for the day. I keep checking Madie's blog to see how the new meds are working...I'm starting to get concerned...no post in nearly a week. Oh, I hope it's helping...Post Jamie!

News, news, and more news!

Hard to believe this was a whole year ago!

Mommy's "trick"? Dangling "treats" over their heads! ;)

Austin and his Bailey!

Well, we didn't do it. No one-year vaccinations. I just couldn't bring myself to let it happen. There are just too many unanswered questions for me to take that risk right now. The pedi thinks I'm risking more by NOT having him vaccinated, but it's not his risk. He doesn't have to live with the consequences they may present. I didn't flat out tell him exactly what I think, but I bought us some time to mull it over anyway. He was completely supportive about the DTaP, but urged me to reconsider the rest. I am. But, I'm in no hurry. All the reasons for me not go ahead with them were just too overwhelming...100+ spasms/day, current bacteria infection (I'll get into that one in a sec), recent compromised immune system from ACTH, plus the controversial links with DTaP and IS and autism and MMR. Not only that, but I know the stress from the vaccinations and the side effects would have a dramatic effect on his already out-of-control spasms. So, we opted out. For now. I will discuss it with the epilepsy specialist, but I'm already convinced he will advocate the vaccs as well. Don't get me wrong, I absolutely do not want to put Austin at risk for the diseases that these vaccines prevent, but I seriously feel (not just from research but from my Mommy gut too) that I would be putting him at even more risk at this particular moment by proceeding.

On the same day of his well visit, the poo mystery was revealed. It is a bacteria, but not the lactobacillus gg. It's clostridium difficile (or CDF for short). It can be caused by antibiotics or from person to person. My money is on the antibiotics since the symptoms started just days after the antibiotics. We're going to treat with yogurt for now and possibly medication later if it doesn't resolve soon. The gastroenterologist did say that the fact that his immune system has been compromised, would greatly increase his chances for developing this bacteria. It only further confirms to me that he may not be ready for such a large dose of immunizations.

Oh, I almost forgot...we're starting vigabatrin soon! I'm anxious to get it rolling, but scared at the same time. It has been my safety net, so to speak. Through all of our trials of meds, I've had vigabatrin in the back of mind to keep me positive. I know we haven't completely exhausted our options, but I've been looking to this one to be our miracle. What if it doesn't work? Then what? Topamax? Ketogenic diet? Surgery? Besides surgery (if that's even a future option), I just don't have the high hopes for those as I do vigabatrin. We are having to order from the UK so I really don't know when we will actually get started, but I'm praying it's the last one we will have to try.

Austin desperately needs some relief from these seizures. I can't just let him go and enjoy some of the little things that make having a child so rewarding. I'm always wrapped up in safety issues and counting spasms. I know there will always be safety issues with any child, but how I would love to just let him be. Just let him roam around and explore without worrying that he's too close to that table or the hard kitchen floor. Even toys below him present dangers. Just last night, he was standing over his activity table playing. I was so worried he would have a spasm and hit his head. But, at the same time, I was so proud that he was actually interested in playing with it that I let it go. Just as I feared, he slammed into it leaving a bright red knot on his forehead. I think I cried more than he did. What a tough little boy. He fussed a little, but I made a bigger deal about it than he did. He just keeps on going...always. He even fell in his play yard the other day and cut his eye (yes, I only thought that was the safest place for him). He wailed considerably and understandably...but once he got his Mommy and paci, he was fine. Obviously, it wasn't long before I completely wrapped and padded those corners before I would put him back in it! He's okay though...it was just a small scratch. But, that's not the point. I'm praying that if nothing else, these spasms will at least lighten up a bit so he can have a little more freedom to experience "normal" activities for a change.

One thing he is doing quite a lot of is walking, walking, walking! He's still not running around or anything, but man, he's really starting to get around. He can probably take up to 15-20 steps sometimes! Then, there's times where he can't seem to put one foot in front of the other. He's certainly getting his fair share of practice though! We "walk" around the living room the majority of the day now. Of course, I've got a tight leash on him to keep him from hurting himself, but hopefully, I can lighten up soon.

Oh, I'm remembering all kinds of new stuff to tell you all! I guess I need to post more often to keep them shorter! At his well visit, the pedi suggested we stay on formula for now since Austin's still not eating enough solids...man, how I was hoping my formula buying and mixing days were over! BUT, he's starting to pick up the pace a little now! I can't believe how much more he's been eating over the past few days...I think yesterday he took down nearly 4 jars of baby food, a container of YoBaby yogurt, AND some potato salad! He was loving that potato salad! That's one of the first times I've been able to get him to eat table food, so that was a big step for us! Big boy milk, here we come! :)