Friday, January 30, 2009

A nail-biter...

I did it.

I asked for the script for the PET. And, just as I expected, I worked it into conversation. I caught the nurse a little off guard, but she explained she would forward to Mr. Doom & Gloom..No word yet. Can't wait to see what he says...

And there's more. Not only do I need the script for the PET, but ALL the pre-determination paperwork has to come from him for insurance approval. I'm terrified at bringing this one up. I just found out for sure minutes ago that I need this. The nurse I've been dealing with from Detroit has been trying to get around it, but it's not happening.

I really did try to get our current doctor in on this. Remember back in November, I was nervously awaiting a phone call to confirm whether or not I was onto something? I got a bunch of irrelevant nonsense back. I really did try. But, do I remind him that no one listened if he sounds insulted that I want another opinion? Would he even be insulted in the first place? Why am I so worried about insulting a doctor that has shown no compassion for us? I can't understand why I'm so hung up on this...This situation should be the least of my worries right now, wouldn't you think? I'm so scared that he doesn't agree that there's a focus and I need him to. He has to document a medical need for these procedures. A medical need meaning there's clinical evidence to suggest a focus exists. There is none. His staff blew me off. All I have is Dr. Chugani's opinion...and he cannot complete the paperwork for me. He's never seen Austin.

I spoke to the nurse at 2:20. It's 3:33 now. I have this terrible habit of picking at my cuticles and biting my nails when I'm nervous or anxious...My thumb is already bleeding. Of course an hour is waaaaayyyy too soon to expect a call back!! Knowing them, I may not even hear back from them until Monday! Maybe they'll surprise me so I can spare the rest of my fingernails!

Thursday, January 29, 2009

So much to little time!

I probably have maybe 15-20 minutes before little one wakes from his nap and wants his lunch...I have tons to talk about, but I'll probably be splitting it between posts...

First, I've got to fill you all in on why I've been so out of touch...Chad's been working like crazy and it's been just Austin and Mommy for the past couple weeks. Every free moment I've had lately has been trying to keep my DVR from deleting my favorites shows! There's not much time for TV watching anymore, so that thing is filling up like crazy...gotta watch 'em! Naps are no longer for chores...that's all Mommy's got nowadays! And, honestly, I haven't really known what to post lately. We've been on such a roller coaster...I'm afraid that by the time I've posted great news, that it will be old news. Good days come, but everyday is different. Those great days are usually followed by the dreaded days. But, I figured that every one of you who check in with us are reading for a reason. You want to know how Austin is doing. That isn't to imply that I don't have anything good to share...I've got tons! As the saying goes...I'm just trying not to count my chickens before they hatch! I was putting off sharing because I was afraid it would change.

Soooooo....where do I start???

Ah, my little cry baby! I say that with much affection! No, really, I do. Have you ever heard a parent say that they're thrilled to have their little one pitching fits?!! Well, I couldn't be happier to tell you that Austin is FINALLY getting some say around here! I think it's quite a 180. He's never been so opinionated before. It's always been the one tone whine...unless he was hurting..On a few occasions he would have an outburst, but for the most part, he'd just go with the flow. And if he was unhappy...just whines. No real cries. Boy, that has changed! Whether it's him ready to get in his bed, or me taking away his paci for meds, or even the sight of the dreaded bib, he's telling me what he wants...and doesn't want! It's such a breakthrough for him. He's never expressed himself like this. He even kicks and screams when I take him out of the bathtub! It's just further confirmation that his personality and cognitive development are coming around a bit.

He's also quite the giggler these days too. I haven't seen him laugh so much since pre-ACTH. It melts my heart to see him laugh again over silly faces and noises. We saw this Elmo Live doll in Walmart the other day...Elmo talked and waved his hands and gave kisses...I must have played that for him over 6 times. Austin got the biggest kick out of that! How nice it was to see such a reaction again! I came pretty darn close to paying the 60 bucks for that silly doll! ;)

The seizures continue...unfortunately. Some days are better than others. Ironically, they've been better the past couple of days than they've been in a couple weeks. I say ironically because he's just come down with a cold. You'd think they'd be higher than usual...Strange.

We're still working on Detroit. I just found out today that I will need our local doctor's cooperation. Great. I was really planning on ducking out on that one. I thought I'd almost made it without them. EEERRR!! I really didn't want to involve them...BUt, they're the ones with all the clinical info and I need a script for a critical test. Darn insurance needs them too. Like I told Mom earlier...this will be a HUGE step for me. Awkward confrontations are not my thing. And I KNOW this is going to be awkward. I can just see it now...when I call them...Um, yeah, Austin has a cold...what can I give him that won't interfere with his seizure meds?...oh, and by the way, I went behind your back to get a second opinion because I think you all are heartless, insensitive, and incompetent...can I get a script for a PET scan? Thanks...
Getting through this is going to be a turning point for me. I've been avoiding it like the plague...We'll see how this one plays out. It's got to be done for Austin and I'm going to do it if that's what it takes. I'm just dreading say the least.

I'll definitely try to post more often. I've been missing it!
I still have lots to share, so check back later!

Thursday, January 15, 2009

just a little consistency, please!

I know it's been a while since a check in...I've been holding my breath for a week now. When I first gave Austin the Depakote, his seizures gradually decreased for several days...then, as usual, when I started thinking that something was working, they started to increase again on Sunday. It was like a painful pinch waking me up from a dream. I know from the past 7 or 8 months that Austin's spasms have never been consistent. They go up...way up...then gradually go down for a while...then back up. There's only been a couple of times that I let myself entertain the thought that a med is actually doing something. That's when the decrease in frequency is so dramatic that I think surely they're going away. But, just like last time, they came back to his normal range of about 50 a day. They were never gone...just waaaaay down. He seems to be better today than yesterday. Only about 5 so far (by this time yesterday, he'd already reached 20). We increased the Depakote to 2mL 3x a day...and decreased vigabatrin to 500mg/day. He'll be completely off vigabatrin by next Tuesday...

There's some good and not so good news in the development department. The good news is that he's completely age appropriate in his gross motor skills! I pretty much knew that, but it felt nice to hear it. He's walking, squatting, reaching between his legs, etc. The tough part was hearing where he is in some other areas. He's still at 4-6 mos on some stuff. My heart sank even though I've known that he's behind. Just hearing it made it a little more real. I'm trying not to get wrapped up in the numbers...I'm trying to be patient and understanding that maybe he's not going at the average pace, but he's going...just at his own pace. He's so happy...He's making some awesome new noises -the latest...we call it the motor far cannot be duplicated by me or anyone else! That's what I forget sometimes... that although it's important for us to encourage him to gain new skills, it's just as important to celebrate today and all the progress he's made already. And I can't mention celebrating without sharing the best moment with you all. He gave me two (TWO) kisses the other night! He even reached to me like he was trying to hug me! My heart melted and tears started to well up in my eyes. It was the first time he's initiated genuine, outward affection in months...since the last post I made about getting a smooch from him. It didn't last long, but it was such a moment. It was as if he just knew that I needed that right then.

Jamie and Madie...thanks for the welcome to the Depakote club! I'm crossing my fingers for all of us here! And I'm so proud for Madie in her stander! What a big girl! Keep it up!

Danielle...I'm with you on Detroit! If there's one thing I'm sure about it's that Austin's right hand issues are linked to his seizures...and if I am going to have confidence in anyone it's Chugani. I'm still trying to get everything coordinated...slow going.

Thursday, January 8, 2009

You are what you eat???

One of my favorites...taken by Mawmaw (aka Grammer)

So, the pedi confirmed my's the veggies making him yellow! I pretty much knew that, but being the nervous Mommy that I am, I needed an expert to tell me! Especially since our new med Depakote (it's not Depakene like the nurse first said) can have serious adverse effects on the liver.

Oh, and speaking of...when I got the Depakote filled and brought it home, I sat down to read the info that came with I always, always do...Even after researching online and finding out how many kids are on it, I was floored at the warnings on it. I decided to hold off on giving it to him until I spoke to the epi about it...

It's a long story, but I got the feeling that he really didn't appreciate my questioning his choice of meds. Call me crazy if you want, Mr. Epi, but I was NOT going to give Austin a drop of that stuff until it was discussed with me! I think since he is my child I have every right to be informed -without seeming like a loon!

Sooooo, I finally ended up starting it mid-afternoon yesterday. Nothing yet...

Guys, I'm totally overwhelmed about what direction we need to be going with his treatment. One minute it's Detroit, then a new epi, then MRIs...there's the keto diet and other AEDs...My brain just feels like one big ball of mush. NOTHING is making sense here! I hate, hate, hate where we are taking Austin for treatment...but, we really only have one other choice without going across the state. Then, say we do that...the new epi will want their own testing done...well, where does that put Detroit? Why would we repeat tests? Dr. C said that there's no reason to repeat the MRI because he knows for sure he would do one. How does that affect how a new local epi would treat Austin's seizures? Then, on top of that...coordinating these tests in Detroit is becoming quite a challenge...let me just say INSURANCE. They want evidence that suggests there is a focus to authorize further testing to find it. ????? There is none! All I have is Dr. C's opinion from an email! None of his previous tests (EEGs, MRI, etc) picks up anything...I thought that was the whole point of seeing this guy. I'm lost....Where is my instruction manual???

There's my vent for the day...sorry. :)

Tuesday, January 6, 2009

Out with the old...

"Seriously?? Did you really just stick that bow on my head, Mommy?"

It certainly came as no surprise when I (finally) got the call back this am from the epilepsy clinic. Taper off vigabatrin. Throwing the towel in on this one... The last increase showed absolutely no improvement soooo....That's it...
We're going to give Depakene a try. Not sure what I think about this one. I don't know much about it, and what I have researched doesn't help so much. It has crazy bad side effects...But, from what I've read so far, the side effects are typically due to certain known conditions and drug interactions. I'll be doing more homework before giving Austin's first dose.

The search continues for a new doc. I'm torn between two different hospitals in the area...But, I do know with much certainty that we will NOT be waiting until June 30 to be seen. That's just absurd to have an eight month gap between appointments...when the seizures are still not under control. The typical length of time between them should be 3-4 months!

Anyway, I'm still trying to get Detroit coordinated. I did find out that it's possible to get the testing procedures done during the same week as the initial visit. Yay...maybe that will limit our trips out there. I was told the first time that Dr. C would have to see him and then order the tests -which would be done during a separate visit.

Austin is still walking up a storm! He gets so excited that he sometimes gets way ahead of himself! He's trying to run, but his little legs just aren't going fast enough! He's still making awesome sounds and eating like a horse. We finally got off the formula!!! Now, if we could just get him to eat something besides baby food! We just can't keep enough on hand to feed the little rascal! He just doesn't like to chew on anything besides his hand or toys...he tries to swallow everything whole and obviously gags when it goes down. Even Stage 3 baby foods are an issue. And when feeding coincides with meds...I'm not taking chances on vomiting! But....we're working on it!

Oh, and I found out this am that the genetics test (ARX gene mutation) we had to repeat due to an inconclusive result, came back negative. That's one more down...however many to go....

I'll be updating on the new med...I don't expect to see any results immediately, but we can always hope, right?