Wednesday, November 26, 2008
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."
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.
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!!
Tuesday, November 25, 2008
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!
Monday, November 24, 2008
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.
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.
Tuesday, November 18, 2008
Monday, November 17, 2008
Saturday, November 15, 2008
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!
Friday, November 14, 2008
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.
Wednesday, November 12, 2008
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!
Director of Grassroots Advocacy
8301 Professional Place
Landover, MD 20785
Wednesday, November 5, 2008
Tuesday, November 4, 2008
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!
Monday, November 3, 2008
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.
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! :)