Monday, November 5, 2012

more than seizures

L's official diagnosis last year was "Reflex Anoxic Syncope and Seizures".

The seizures were so obvious that I never really paid any attention to the word syncope.  He would have an RAS episode, then have a seizure.  Every once in while, he'd manage to work his way out of it before the seizure started, but for the most part, once it started, it always ended the same way.

But now that L has basically stopped having seizures, I have been able understand the syncope a little better.   In the last week or so, L has had a few episodes.  He hasn't had seizures, but he has lost consciousness.  It's hard for me to accept, sometimes, that as hard as I work to stop his seizures, he will still have RAS.  His heart will still stop and his breathing will still stop.   The end of his seizures hasn't meant the end of his suffering.

In the last few weeks, we've worked with L to help him snap of out it before he gets to the "point of no return."  My friend told me that with their daughter, they taught her to take a deep breath at the count of three.  We've tried it lately, and it helps.  I wish diet could be the only answer, but it seems I still need a few more tools up my sleeve.



14 comments:

  1. Oh Robin, I can't imagine how difficult this must be and how this must feel. Praying you can find some answers to help things a little quickly...

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    1. Thanks Meredith. I should be grateful about the seizures stopping, and I am. But sometimes as a parent I do wish I could just step in and take away all the bad things :)

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  2. Oh, I'm so sorry, Robin. I honestly can't think of anything worse as a mom, than watching your child suffer.

    You are so in tune with your children and how to help them. They are truly lucky to have you as their mom. I hope you get more answers that are helpful very soon. --Lisa

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    1. Thanks, Lisa. I'm still hopeful that one day before too long, he will grow out of it. I appreciate your comments.

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  3. Seems to me you have ample sleeves. I'm sure you'll find everything you need up in there. My grandma told me recently that getting old isn't for wimps. Parenting isn't, either.

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    1. Rita, thank you so much. I feel so fortunate to have supportive friends all over the world pulling for us.

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  4. That sounds miserable. Poor Lennon and poor you for having to witness something so scary!

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    1. He is very resilient. He is always back to normal in no time. :) Thank you.

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  5. Robin, I'm sure you'll find exactly what you need. You're strong and so are your babies.

    Wishing you well, always ♥

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    1. Thanks Xae!! I love looking through all these comments and seeing all the support we have.

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  6. I'm so sorry your little guy deals with this! I hate it for you:( I need to do more research..I did not realize that part of it all. You are such a strong, good mama and the fact that you are doing everything you can to try and help your little love proves it! Sending love from TX as you get through it day by day with him!

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    1. Thanks Amanda. He's a strong little guy- I'm so proud of him.

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  7. I'm sorry. : ( That has got to be scary seeing him lose consciousness! I'm glad you're learning some stuff to help him.

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    1. Thanks, Bryn. It's not as scary as it used to be. I still wish he didn't have to deal with it, but we're lucky it's not happening too often any more.

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