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Thursday, January 28, 2010


Botulinum Toxin.

Such a foreboding two words, really. Translation...botox.

And we're considering it for Christian. Oh, we're more than considering it. As soon as insurance gives the go ahead, Christian will receive two shots, one in each adductor, of botox. It's not just for crow's feet and laugh lines anymore, ladies and gentlemen.

Botox is now used in small doses based on weight for individuals with spasticity. This is what Christian has and what I'm talking about when I refer to his tone/tonal patterns. Christian has a form of what is called hypertonia or a stiffening or tightening of the muscles in his legs. He still has full range of motion and can be stretched out and we want things to continue that way. That's why we're doing Botox.

What Botox injections will do is temporarily paralyze the muscles that are so stiff or spastic. This will allow us to work other muscles groups around these paralyzed muscles so that those muscle groups can strengthen and, hopefully, reduce and/or eliminate Christian's spasticity.

Why is this important? Well...remember my post of about Christian's orthopedic surgeon? He seems to think it is of dire importance that we cut my son open to release his adductors immediately. When adductors are tight, this can pull the hips out of socket, causing multiple, serious problems. In no way do I believe Christian needs this surgery. Instead, I'd like to consider alternatives. That's why we're considering Botox injections.

So this is why we went to see the neurologist today. This isn't Dr. Hendricks, Christian's regular neuro at the HBOT center. This is...who I've referred to in the past as...Dr. Death. I know, that's probably not fair of me to call him anymore, but he's now a character in this blog and that's how people know him so who am I to change things? Long story short, this was the first neuro that saw Christian on the night of his accident. He has zero bed side manner and he was also the neuro who had no time to look at or explain Christian's EEG findings to me.

But we had to go to him because, apparently, he's the only person in southern Arizona who can do pediatric Botox injections. Go frickin' figure.

The great thing was Christian's PT came with me! Awesome because she's a professional and not some crazy mom trying to tell him what to do. And she also knows Dr. Death both personally and professionally. Go frickin' figure again!

She was a great intermediary. Little Lola came along, as well, and did her job of just being cute, thus softening up Mr. Crabby Patty. (He just keeps earning nickname after nickname! Any Spongebob followers out there?)

I explained to him why we were there since he hadn't seen Christian since September. I also explained I'd been seeing another neurologist. I got the feeling he was a little butt hurt that I had cheated on him with another nuero. He said, "I'm going to defer all of your questions back to Dr. Hendricks so what do you need me for?" Yeah, he said it just like that.

So I said, "We need Botox and I hear you're the man to do it."

He consulted with the PT and they discussed different areas where Christian might benefit from it's use. The PT suggested Christian's lower back to ease extension, but that didn't sit well with me because our goal right now is to strengthen his lower back and I didn't want to loose any ground. So I suggested that by loosening the adductors, perhaps that would loosen the back (which could happen because it's the spasticity in the legs that pulls on the back and spine). So I said that maybe we should just do the adductors for now and if in six months we haven't gained any ground with the back, we can then do the back. The PT and neuro surprisingly agreed.

The meeting was pretty painless, but I had to break the news to the HBOT center that I saw my ex (gasp!). When I brought up Botox before, they were leery of it and suggested I wait for more HBOT treatments. But if, in deed, Christian's hips are really at that much risk in such a short amount of time (which we'll know when we get our second opinion), it is my job as Christian's mom to do whatever it takes to make sure his body is okay. Whatever is in my power I'll do. If it means injecting poison into my son, as some people will see it, so be it. I know that sounds morbid and not that wonderful, but it could be wonderful for Christian. We have to do what we have to do and time doesn't seem to be on our side for this one.

And to tell you the truth, if someone said that a vial of poison would help my son and improve his quality of life, sign us up for the vial. Is that too honest? It's because I'd do anything to help my son and that is the honest truth.

Speaking of Crabby Patties, Christian has been one all week. I was thinking it was teething because he was getting so many teeth at once. And it takes longer for Christian's teeth to break through because he isn't gnawing on anything to help those gums. Other than the teething, I don't know what's bothering him. That's one of the hardest things, figuring out what's going on and fixing it.

Everyone please pray that my little Crabby Patty will feel better soon! And also please pray that the Botox will be beneficial to Christian.


Alicia said...

I love Spongebob!! ; )

Marissa got Botox in two of her salivary glands a couple of years ago because she failed a salivagram and the docs thought she was aspirating on her saliva. It dried her up a little for a couple of weeks but she passed the next salivagrams so we don't need it anymore.

I know lots of kiddos who have had the Botox injections to loosen their joints up and it really works for them! I don't take issue with Botox at all or with parents who choose to give it to their kids. We all know we are all trying to do the best for our kiddos and this sounds like it is what is best for Christian. I'll be praying it does the trick for Christian.

Have a great weekend!

HesterFamily said...

Inject him with poison, stand on your head, chop off a limb - whatever your child needs is what a momma bear will do! Praying for relief for Cranky Pants (the name I give my son when he's cranky) and that the botox does the trick! And of course continued prayers for strength for you to continue to do the wonderful things you do and for smiles!

Wendy said...

Hi Shawna
Luca had botox in his arm to try and bring it down. It was permantly raised up by his ear. Didn't enjoy watching it but it certainly did the trick. We were able to start working on the arm and so far....... touch wood, it doesn't look like he'll need it again. Look at the whole picture and do what you have to do.

Jen said...

What doesn't kill us makes us stronger.... and when FDA approved, it's vastly safer

Botox has done some wonderful things for people in this household. my mini one was born with her left arm stuck under her chin, it had been sitting in that place inutero for a good chunk of time. after 6 months of not so promising threapy, she had a shot, and boy did it change her, 2-3 days later, and 2 rounds of OT, and she was asleep with her arm at her side. She still has some weakness issues, but she is a wild woman and doesn't let it hold her back.

I also had 2 shots of it in my hips. I have juv. arthritis, that has continued into adulthood, with avengance. I walked the entire Philly flower show 4 days later, and had never remembered doing that with the ease I did!

Jen said...

P.S. Huge spongebob fan!

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