Sunday, December 30, 2012

Two for two

Oops...
Two seizures in two days.

Horrible.

I haven't been careful lately about keeping L away from too much sugar.  Last week, it was gingerbread boys. I was a little nervous, at first, but nothing happened.  On Christmas he had hot cocoa and fruit snacks in the morning, and birthday cake that night.  The next day it was pancakes with syrup and two days of the days since then we had chocolate chip dip with apples for dessert.

In the last two weeks, he's had more sweets than the previous 8 months combined. I never knew sugar was a trigger until he had a seizure on Easter morning after eating a basket of (healthy, additive-free) sweet treats. Since then, I've known that even additive-free sweets put him at risk.

I guess I just got sloppy. Everything we know about managing L's condition with diet is guesswork and trial-and-error. There is no information out there about treating RAS with diet. None. No doctors advising diet changes. No fliers with foods to avoid. Nothing in the whole wide Internet.  

So when I see him eat more than usual with no adverse effects, I start to question whether it was just a coincidence that Easter morning. Maybe I'm unnecessarily complicating his already limited diet. Maybe sweets aren't a trigger.

But they are. Sorry L. We're going to break this streak right here. No three-peat tomorrow, I promise.

12 comments:

  1. Oh, no. I'm so sorry. I wish sugar wasn't a trigger because I can only imagine how much that does limit his diet. (and we know from limited diets, it can be a real downer)

    I'm just so impressed that you've figured out that sugar is a trigger, though. Since there is literally no information on it, it's just your keen observation and being in tune with Lennon that you can credit with this knowledge. You rock, mom.

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    1. Thank you- it's hard not to blame myself for each one, but it helps to focus on all the ones we've avoided.

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  2. I'm sorry, Robin. My heart goes out to you.

    I used to think my son was being dramatic when he said he was allergic to nuts, but sure enough - we had a test and he is. About a year later, I made soup and put some pesto in it, and he insisted it "tasted funny". I was like, just eat your soup already. And then he spent the whole night puking it up. I looked online, and some brands of pesto use the nuts he's allergic to instead of the traditional pine nut. I was just sick that I had fed him something that caused a reaction.

    So don't beat yourself up. Now you know, and you can move forward. Think how far you've come! You're doing great!

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    1. Thanks, Deb. It's awful when we make mistakes like that, isn't it? All we can do is just keep on trying and focusing on the good.

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  3. Wishing you and your family a bright 2013. Sorry to hear of the seizures and I hope the new no sugar plan goes smoothly xx

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    1. Thanks- I think it will. it's worked well in the past for him.

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  4. So sorry, Robin.
    I don't understand why even the doctors have no information on the food triggers. Hopefully you'll find something soon enough. In the mean time, hang in there.
    My prayers are with you.

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  5. You're such a good mom. It's not your fault. It's RAS's fault.

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    1. Thanks Katy. I usually feel that way. It felt different this time, but 2 days no seizures and I'm on top of the world again.

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  6. Replies
    1. Thanks Bryn. We're doing good- no seizures since last year. ;)

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