Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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Simple Updates

Posted by Nicole on April 26, 2011 at 10:25 PM

I don’t have anything earth shattering this week, so here’s the scoop:

 

1. VNS: Still ramping up, first week was heavenly, 2nd and 3rd have not been great. 1st week was probably due to the anesthesia giving his brain a much needed break. Too bad they can’t just put him under once a week :) . Would CPS call us in if I inquired about this option?

 

2. Almond oil: Going strong. He definitely doesn’t get enough fat, so we’re keeping it in his regimen.

 

3. New diet: Gluten free. We’ve done this before in short stints and not seen any improvement, but after doing other much more restrictive diets this one is a complete no-brainer and ridiculously easy to implement, so why not? Plus, it’s recently helped my dad’s odd pharmaco-resistant rashes and blisters significantly, so there’s more genetic support than there has been previously. (Can I just reiterate how easy this diet is compared to others? I feel almost guilty when I think of those on the MAD or the ketogenic diets. Aiden doesn’t even know he’s on a new diet – score for me!)

 

4. Midazolam (buccal Versed): I love you. If there were a company who made you other than the generic one our pharmacist orders from, I would send them a batch of cookies and the sweetest thank you note they’ve ever received. How great is it to roll over, swipe his VNS magnet (to no effect yet), then draw up a syringe full of Versed, squirt it in his cheek, and massage it while the medicine absorbs and calms his seizure? So great.

 

5. Dear Husband: I hope to one day sleep in the same bed again. But not right now – we both know these nighttime complex partials are too scary, lengthy, and undetectably subtle at the moment. This, too, shall pass. We’re working on getting a new Emfit convulsion monitor that might detect these. In the meantime, we’re going back to jingle bells on all limbs. I will see you again, Honey, I promise! Xoxo.

 

6. School: 10 days left of preschool and counting. Remember when you were in school and you watched the clockhands move, ever so slowly, around the ginormous white face? I’m there. Preschoolers are great, and fascinating, but… well… I’ve run out of books to read at the moment.

 

That's all for now folks!

Categories: April-June 2011

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