Monday, November 3, 2008

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 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, 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! :)


JSmith5780 said...

I have very surprised that the pedi would consider moving forward with any vaccines 1) since he's so recently off ACTH and 2) because he's still having IS. Both are good reasons to wait! I am not anti-vaccine. Austin was 16 months when he started seizing so he had MANY vaccines before that and then picked up AFTER his IS ended.

I truly hope that Vig works for your Austin. Side effects were minimal for my Austin. The worst was he had a hard time settling for bed. Melatonin helped this ALOT.

Since my Austin was 16 months when his seizures started, he was mobil. He was forever hitting his head. Every picture for about 10 months showed him with bruises on his forehead. I would agree that I think it bothered me more than him. If you are very concered ask about a helmet for him. They aren't attractive, the kids generally hate them, but if it keeps him safe, it's worth it. Austin chipped a tooth once and FINALLY, after 4.5 years it has fallen out. I had a party that day!

good luck!

aRtcHixX said...

First potato salad, yogurt, and walking - who knows what is next for your big man!!!!
I'm catching up on some Austin news and I can't wait to see even more walking!