Monday, November 23, 2009

Cue Hallelujah Chorus

We just got back from the neurologist's office and, people, Collin's EEG is 90% improved. As in, no longer hypsarrhythic. As in, no longer shows signs of Infantile Spasms.

Let's all just take moment to let that sink in and smile.

...

That was nice. Now, what this means practically is that we're ready to start weaning off of Sabril.

Side note first: We did not actually have an appointment with Dr. Awesome today; we were only scheduled for an EEG. When the test was over, I asked our amazing tech, who has done almost all of Collin's EEGs if she thought I could ask one of the nurse practitioners a question about splitting up Collin's Sabril dose. Well, she walked right out in the hallway and grabbed Dr. Awesome and he came in and sat down, read Collin's EEG right in front of me and had a nice little chat about what it all means and what to do next. He also did a lot of yelling (Dr. Awesome has an inordinately loud voice, in case I never mentioned that before, and he isn't afraid to use it) and Collin had his eyes clamped shut the whole time; then the minute the doctor walked out of the room, Collin opened one eye and peaked around. He might as well have said, "Is he gone?"

ANYWAY, this drastic improvement in EEG, together with Collin's lack of seizures since his first dose of Sabril, means that we're going to start weaning from Sabril. When Dr. Awesome first mentioned this possibility, my eyebrows shot halfway up my forehead and I said something really intelligent like, "Are you sure?" We've spent months looking for something that would work for Collin and now that we've found it, Kyle and I are what you might call reluctant to let it go. Reluctant as in you'll have to pry it out of our cold, dead hands. But the doctor explained that there is a strong likelihood that the Sabril has caused a change in Collin's brain chemistry and that with a careful wean, he might no longer need it.

And this is where we take a break to give Sabril a big bear hug - one of those that makes you feel like your eyeballs are popping out of your head but you don't mind. (And remember Claire? You should know that Claire has called us almost weekly during all of this to stay on top of things and make sure we have everything we need and check on Collin. How incredible is that? Everybody wave at Claire. I, on the other hand, am going to grab Claire's hands and jump up and down like a crazy-excited little girl.)

Concerning the sleeping havoc I mentioned yesterday, Dr. Awesome says that those kinds of sleep disruptions are common in kids whose brains have been tinkered with the way Collin's has over the past months. So we're going to divide his Sabril dose into two smaller doses and give him a little melatonin at night to try to help get his sleep pattern more regulated. Fingers crossed. Although after the good news today, I have a hard time being too upset about not getting much sleep at night.

So, in summary: Collin's brainwaves are significantly closer to normal and no longer show signs of Infantile Spasms, so we're going to start to wean him slowly from the Sabril, continue weaning him from the Klonopin (clonazepam), and put him on some melatonin to help regulate his sleep patterns. Also, Dr. Awesome is awesome and Collin is a champ.

16 comments:

  1. "sink in and smile" I'm positive by smile you meant cry like a baby and do a little hokey pokey dance around my living room, because that's what I did.

    I'd also like to point out that this little miracle is just in time for Christmas. ;)

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  2. Talk about making of a day! This is such great news and we are so excited for you all and most of all Collin.

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  3. This makes me so amazingly happy! Thank you, Lord, for this wonderful news!

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  4. Mary Gallagher DavisNovember 23, 2009 at 3:30 PM

    Collin IS a champ!! And God is AWESOME. I have been following your journey for months and praying for you all daily. Please give Collin extra kisses tonight!

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  5. Woo-hoo! See ya later hypsarrhythmia! I've thanked God a lot today for all of the good news and the helpful people who brought it. Who believes in coincidence? Not me.

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  6. God is good! Life is good! I'm crying just a bit as I write this, and I know that I won't be the only one praying in thanksgiving tonight! Love to you all.

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  7. Smiling from ear to ear for Collin!

    DeEtte

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  8. Hallalujah!!! I just LOVE IT when God answers prayers! This is an amazing development!!!!!!!!

    Love and happy jigs!

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  9. Annie and Kyle (and Collin!) - I am celebrating with you and praying - thanking God for his Goodness, to give you strength for your journey and for his continued blessings. I am glad you got such good news!
    Janet Morgan (Michael Morgan's mom)

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  10. YAY!!!! such incredible news, praise God! Can't wait to see you guys and CELEBRATE! Yay for Collin!!! :-D

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  11. Annie, Kyle, Collin...
    After a long day of flying solo (Dustin is away at work for a few days!) and being just totally exhausted, this was just the news I needed at the end of this LONG day! I am so happy to hear of this news, and will be thinking of all three of you during this week of remembering what is important and what to truly be thankful for!!!

    Jill

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  12. Hooray!! What exciting news!! I am going to give you all one of those crazy bear hugs you described when I see you this weekend. I do believe Thanksgiving will have an added dimension of awesomeness this year ;)

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  13. Three cheers for Collin the Champ and his tireless team!! Hooray!!

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  14. God had finally answered prayers. I will continue to pray that he continues to improve.

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  15. This is definitely Thanksgiving worthy news! I'm sorry i just now read it!!! I hope you're having a fabulous birthday weekend and a lot of good family bear hugs...eyes in tact :)

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