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Wednesday, May 5, 2010

Like Button (Insert "Thumbs Up" Here)

If Vigabatrin had a facebook page, I might consider becoming a fan.

I know for sure I would click the "like" button.

The report on Vigabatrin far, so good. I'll start with the "cons" because that list, so far, is short.


Christian is drugged. He doesn't have the glassy eyed, lazy, not doing anything druggyness about him. But there is a difference. Prior to beginning Vigabatrin last Thursday, I had Christian completely off all medications so going back on a high dosage of a very potent drug has definitely changed Christian. I'm not so sure that's a bad thing at this point.


Christian's seizure activity has decreased to almost nothing but a few tiny things that are questionable at best. I used to wonder what life would be like when Christian doesn't have anymore jerks. Now I know!

Some other interesting findings - No more throwing up. For the last month or so that has been a huge issue. But hasn't it always been an issue, you ask. Yes, but we have our ups and downs with it, good weeks and bad weeks. We were in a bad month. He was throwing up in the middle of the night, which he hadn't done in a long time, and made several attempts, about half successful, to throw up during the day.

After Vigabatrin was introduced, it was literally night and day. He immediately stopped throwing up, or even attempting it. This leads me to believe that his throwing up is definitely related to his tone, which leads me to my next observation.

Christian is a noodle. He is completely relaxed. Not drugged relaxed, just relaxed. There is gravity, which is hard for Christian to feel since he is always tight. But every part of his body is relaxed, from his back to his extended neck to his stubborn, pointed toes. We can actually properly snuggle him like a baby. His legs can be adducted (spread apart) so completely that I can sit him on my hip while carrying him with his head on my shoulder. There's no more jerking back in extension. It's just a calmness.

He's not crying anymore! I mean he cries if he's upset about something or wants to be held or if he's tired. But no more all day long crying. And his cry is different. There is different pitch and inflection in his cry. It's very interesting. It's no longer just a monotone, but instead, there are highs and lows in his voice.

His body was so different that during therapy his PT couldn't believe it. She said he was like a different kid - especially because he was allowing so much without protest. He tracked his silver pom-pom and made a few attempts to reach up to it. So, although he's a little drugged, he's still alert and moving. He's allowing more things to be done with him. He used to protest and complain from the slightest bit of stretching or moving sometimes. But so far he's been going with it! If his tone continues in relaxation like this, we may need to reconsider even getting any Botox.

We'll see how this plays out. It is new so as his body gets used to it, things could change again.

But, as it stands now, Mama likey.

Looking in the mirror during PT, bending one leg all the way up on the ball. He's not looking at himself here because, if you notice, he's fixed on Spongebob and Patrick on the left.

"Hey, that's me in that dirty mirror that my mom should really clean."


HesterFamily said...

That is SO awesome!! I have heard and read so much about the difference that can be seen in children once seizures are diagnosed and treated - differences you wouldn't expect. The focus is so much on getting the seizures to stop that you don't even realize what other symptoms/problems are associated with that activity. It's such a scary thing to think about having to give your kiddo some powerful drugs - but they are just that - powerful and that doesn't always have to be a bad thing. And Christian looks so good! Way to go superman!!

Eliisa said...

What a handsome little man. So glad the meds seem to be working!

Alicia said...

Wonderful news! I am so happy that the new med is working so well. I hope and pray that it continues to help him with no ill effects. YAY!! I "like" Vigabatrin too!

Colton's Journey said...

he looks more relaxed too! YEAH for happy MAMA too

Susan, Mum to Molly said...

I am sooo pleased you have seen such quick positive results from the Vigabatrin. Go Christian!!

We too saw a very quick positive response the first time we used it with my daughter Molly, which was a great relief.

Amazing that it has only recently become available in the US though (we live in Australia, and first used it almost 4 years ago) - makes me think of what kiddos there might have benefited from it before now...

I don't want to put a dampener on your high about it, but there is another "Con" to keep in mind, which I hope your neuro has explained - there can be negative side-effects for a child's vision (i.e. a reduction in their visual field), and this should be monitored for.

This became an issue for Molly, especially as she already has vision problems caused by her brain injury - fortunately we have found another drug which is equivalently effective for her as the mighty viga.

Take care, and again - am so pleased to hear Christian is relaxed & happy and vomit- & seizure-free! Well done Shauna!

Brooke said...

He is such a little man now Shauna!! I just love seeing new pictures of him!! That's awesome that you found something to be working for him!! Yay for less crying and no puking!!!! And yay for being able to tolerate more PT with less rigidity!! You rock on with your bad self Christian!!

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