July 2, 2012

Epilepsy

Hello Dear Charlie Fans,

Charlie had a follow-up appointment today with his neurologist to look over the results of his last EEG. Unfortunately, based on those results and some observation of Charlie's behavior, Dr. Dowling is going forward with an epilepsy diagnosis.  We knew there was a possibility that Charlie was having seizures, but weren't sure until now. Charlie's seizures are tiny little blips, which present as three or four second bouts of staring into space followed by a chewing motion. They're so small that they've largely gone unnoticed.

This is, of course, a tough moment for our family because it means we're going to put Charlie back on a seizure medication. Luckily, the days of nasty Phenobarbital are behind us. Charlie will be starting a drug called Trileptal right away. Some side effects include possible skin rashes and lethargy. The goal is to allow Charlie to operate at the top of his potential. While the seizures are not depriving him of oxygen or presenting any immediate danger, they are inhibiting him from collecting and assimilating all the information in front of him. And for a kid who already has to re-route most incoming information (due to the stroke), little seizures can spell trouble as he attempts to learn and move forward developmentally.

Our neurologist was thrilled with the progress Charlie has made in the past few months noting that his ability to continue to grow and develop in the face of undiagnosed seizures is "outstanding".  Dr. Dowling is very pleased with the level of therapy Charlie is receiving and enthusiastic about our upcoming appointment to be fitted for orthotic braces. Dr. Dowling also took note of some abnormal physical behavior that Charlie displayed during the appointment - nothing specific to report here, just one more thing to observe and keep track of.

I came home with a piece of paper that says "Information from today's visit:"  It's tough to look down the list and absorb the fact that these are the descriptive terms being used for my baby:

Stroke
Neonatal Hemorrhage
Abnormal Behavior
Cerebral Palsy
Hemiparesis
Developmental Delay
Epilepsy

But just when I think I'm going to lose it, or cry or yell at someone in line at the grocery store I just look at Charlie, whose countenance exudes peace, knowing and fortitude. As my husband likes to say, "I hate to give away the ending, but it's all going to be okay."  So in case you, like me, are worried by the information above, I thought I'd include a photo of Charlie's face to calm your fears.



Thank you always for staying in touch with our little family. Your thoughts, prayers, kindnesses and support uplift us, sustain us and remind us that we have so much to be grateful for.

All my love,
Sarah


27 comments:

  1. Lots of love to you and your little family...thoughts and prayers regularly sent your way. You are a constant source of inspiration.

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  2. His eyes melt me. Many hugs to you and the family.

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  3. Best to your family, Sarah!

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  4. thank you for the update - and most of all, thank you for that picture. It makes my heart fill with joy and love!! xoxo Dina

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  5. You're husband is totally on to something...I know it's hard to remember but it is 100% true. Love to your Charlie and his fambly, Y

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  6. Gorgeous boy! I hope his meds do the trick and w/mild side effects. <3

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  7. Hi, I'm Meighan Bell Larbi's sister Gillian. I have epilepsy and would be happy to help you out with any questions. I feel for Charlie (who is adorable!) This is a manageable disorder but it does require a lot of patience. Best wishes to your whole family!

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  8. dude. he melts a heart, doesn't he?

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  9. All my love to both of you and your beautiful boys. My prayers continue -for patience, resiliency and peace - for you. Thank you for sharing the wonderful picture. I'll hold it in my mind, as there are times when I catch a glimpse of the heartbreaking challenge in all that you're contending with. But that gorgeous kid has an amazing beloved soul. You can see it shining, richer and more beautiful than all these challenges - which you well know - which, in fact, you and Charlie are teaching all of us. May that knowledge be the star that guides you as you navigate all the very real, moment to moment, day to day, issues. I know it does. All your friends on the Central Coast, and particularly the Booher's, hold you in our hearts until we can next hold you in our arms.

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  10. It's all part of the journey, and we're all in it together. Accept help. Celebrate sucesses. If your family is like mine, Walker is the best therapist Charlie could enlist and meds... well... they are there for a reason.
    so much love,
    b

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  11. I admire you, Jack, and Charlie! Your combined love will overcome all. That combined with all the love you three have inspired the world over........Jack is right. It will all be ok! There is nothing neither good nor bad, but thinking makes it so.

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  12. We love you all so much. Life is good, no matter what the labels say, just look at that face. Hugs and kisses.

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  13. He's a handsome little guy and his eyes show life, love and happiness. Thanks for sharing him with us!

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  14. Charlie is such a darling little boy. I love seeing him and his brother.You are blessed!
    Betty

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  15. I'm not a religious person, really, but I think God chose Charlie just for you and your family. He's going to be a huge blessing. I'm glad you have a wonderful husband to help you on this journey.

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  16. Charlie is a blessing.....really he is.
    He will teach you more than you can ever teach him.
    I'm glad to read he has made some good progresses.
    Continue to focus on those positives.

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  17. My heart goes out to your family and your little boy. This news certainly puts a perspective on my own little trials and tribulations. I so admire your courage and Charlie's. He's an amazing boy. May the Lord bless you all today and each day forward. You can count on me to add "Charlie" to my daily prayer list.

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  18. you are quite the woman, sarah! your look at life can all teach us something and the way you take care of yourself & your family is extraordinarily beautiful~ you exude power, soul, fortitude, love, peace & tenderness....
    go girl!!! i love your blog and i think you rock~

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  19. That Charlie is amazing. Sad to see that you have deal with epilepsy, but if you can control the seizures he may flourish even more. I have a child with epilepsy and he also has simple partial and simple complex seizures; it is hard to tell when they are short. We had to try out 3 different meds to find the right fit. Our neuro referred us to epilepsy.com and http://professionals.epilepsy.com/homepage/index.html to read about meds and learn more about living with it. Hugs to you all, Melissa

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  20. Best of luck to you and your lovely family.

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  21. How lucky he is to have you both as his parents, and how lucky you are to have him as your child.

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  22. He is a beautiful baby. He is oh so lucky to have such a wonderful woman as his mother.

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  23. I have NO idea how I wound up on Charlie's page, (I tend to "wander" a lot when I'm online), but once I stumbled across this site, I was compelled to read every last entry about little Charlie. What an absolute DOLL! He is just an amazing kid and I've been sitting here grinning like a fool at his wonderful, beaming face and the inspirational videos. What an amazing little boy you have there, and Walker is SUCH a good brother! You GO Walker! I can see you are going to be a very strong man since you take such good care of your brother when you can. It takes a lot of strength to help others sometimes and you're a super tough guy!

    I wish you guys all the best. My warmest thoughts to your wonderful family and I look forward to cheering as Charlie progresses and will hold him up in my heart and thoughts, when he needs it.

    Susan

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    1. Susan,

      Thank you for this lovely note. I'm so glad you found Charlie's site and that it has made you smile.

      All my best to you and again, thank you.
      Sarah

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  24. Sarah - "I hate to give away the ending, but it's all going to be okay."

    How touching. What an amazing statement to be told!

    Loretta

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