At about the same time that I was diagnosed with breast cancer Marcel began having "little spells". He would freeze, sometimes in mid sentence, his eyes would roll upward and his eyelashes would flutter. We would try to speak to him during these moments and he was unreachable. They would only last a few seconds and happen about once a week. Over the last six months they starting coming more and more frequently. Every day, and sometimes several times a day. He was having seizures. His neurologist scheduled him for an EEG to determine what type.

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waiting for EEG; Stanford

We had to keep him up until midnight the night before and wake him at 5am. He could not fall asleep, even for five minutes, before the test. Besides the EEG they also did these light strobe and hyperventilation tests. It was quite scary to see how the hyperventilation test induced a seizure. I kept calling his name. He couldn’t hear me. Finally I shook him. He woke up and calmly said, "Oh". It all took about two hours. That was two weeks ago. The doctor was out of the country and we weren’t able to get the results until yesterday. Talk about waiting on pins and needles.

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thirty electrodes attached

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pulling off thirty electrodes

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amusing himself

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going home to wash the glue out of his hair

We finally got the results from the doc yesterday, who casually said, "So, as you know the EEG was abnormal." NO! We didn’t know. How could we know? You were out of the country! What a thing to say. As it turns out, Marcel has epilepsy. He suffers from Absence Seizures. They generally come on in childhood and are outgrown by the teen years. I’m still doing my research. So far, from what I can tell, the side effects of the "preferred" drug for treatment are worse than the symptoms themselves. A lot worse. I’ll be taking my time, as usual, deciding on the best and healthiest approach. Marcel is doing just fine. I was pondering the perspective on it last night. How in our culture we always look at physical symptoms in a scientific way. I like to think of it as a sort of stigmata. Marcel. That special one 🙂

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artwork at Stanford, Deloss McGraw

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25 responses to “Marcel’s Beautiful Brain”

  1. victoria Avatar

    oh sylvie,
    you know how special marcel is to me! i will never forget the night i met him and how he stuck by me and told me his little dog was named cooper. just nights after my dog cooper had passed away. he is so special. i will think good thoughts for him and just know he will be okay. my love to all of you.
    victoria

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  2. Ez Avatar

    Dear Sylvie and Marcel! I have followed your story here from flickr and I just want you to know that my thoughts are with you both right now. A wonderful site that has so much to offer is: http://dailystrength.org
    There is an excellent seizure support group on there and everyone is so generous with their insight and wisdom. I hope this may be of help to you right now.
    Warmly,
    Ez

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  3. chez shoes Avatar

    Looks like Marcel was quite a trooper through the whole testing ordeal. Sending good thoughts your way!

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  4. Catie Avatar

    Sometimes I wonder if certain doctors aren’t exactly human. I’m sorry for your horrible wait and the even more horrible timing of the whole thing, but I’m glad that this will not be with Marcel through his whole life.
    Hey- did the glue wash out of his hair okay? Also, that kid has some amazing eyebrows!

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  5. Sylvie Avatar

    Dear Victoria, I know how much Marcel means to you. I really feel that. Thank you. We were thinking of you when we were haunting Chinatown the other day 🙂
    Grazi for the link Ez. By the way, I love the post you did on Arthur’s Circus.
    Merci Marielle, you’re so right. He was a trooper. Thank you for the sentiment 🙂

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  6. Sylvie Avatar

    Thanks for being on our side Catie Cake! We did manage to get the glue out 🙂 It’s too bad it didn’t coincide with our visit to the rock-a-billy vintage car show in San Jo last weekend. I could’ve given him a great pompadour!
    Come by some time and say “Hey”.

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  7. Dionna Avatar
    Dionna

    Wow- what an ordeal.
    I think Marcel is such a beautiful child….he reminds me in some ways of my little boy- only a bit older.
    I think of you often, and will add this to my list of good thoughts sent your way.

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  8. simplygrove Avatar

    I just found your blog thru AphroChic and wow!!! What a story you have!! Your son is such a beautiful child! YOu are in my thoughts and prayers!!!

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  9. LindaH Avatar

    Poor Marcel, I remember having the same tests myself as a teenager. The glue is vile to get out 😦
    I think you are right to consider all the options. I’ve worked in schools in the UK with children on this medication and the effects on their behaviour can be really bad. However, if they get the dosage right and just the right tablets it doesn’t cause those problems. There’s no doubt the seizures are disruptive and make it hard for a child to concentrate. Good luck
    Linda

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  10. Moodboard Avatar

    cuddles Marcel I’m so sorry that you are going through this Sylvie, and I’m constantly amazed by your strength. I love the 3rd picture, such a great personality, like mother like son.

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  11. Veronica TM Avatar

    sylvie, how can i express all that i want to tell you? know that i am here for you, i am thinking of you, sending marcel loving kindness, wishing i could give you a hug.
    to think that in the middle of all of this you took you time to write the most loving and supportive emails to me is just overwhelmingly amazing.
    taking you and marcel in my heart wherever i go.

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  12. Sylvie Avatar

    Sending you hugs Vero. Seems like we’re being flung into the 21st century with a vengeance. We all have to stick together 🙂
    xo

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  13. Sylvie Avatar

    Dionna, Simply Grove, and Moodboard…I’m passing along your wishes and cuddles to Marcel. Merci beaucoup xoxo.
    Thanks for the info LindaH. Since Marcel is home schooled the concentration thing is not a real problem. My first thought as an alternative to the synthetic drug was fish oil (Omega 3)as I know it can benefit the brain. Then I came across a doctor who uses it for his young girl’s seizures and has gotten great results.

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  14. LindaH Avatar

    Good luck with the fish oil 🙂 I hope everything goes well for you and Marcel.

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  15. Anna H. Avatar

    Of course your beautiful boy has a beautiful brain!
    I’m thinking of you all and sending love from LA.
    xxoo

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  16. corine Avatar

    What a cute little guy.
    Children in hospital beds, at their most beautiful, bravest, most innocent, and most vulnerable moment. I had that experience too. Mine had a congenital heart defect. (Surgery essentially cured it.) It lifts such a weight to get answers at last.

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  17. My@ Tha Hotness Avatar

    Hugs and blessings to you and your family…

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  18. Di Overton Avatar

    Thinking of you both. You certainly have had some stuff to deal with of late but as always you are so sensible about it. Love to you both
    Di
    xo

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  19. maryam in marrakesh Avatar

    Stigmata and being the special one…….That’s so lovely, Sylvie:) I am so sorry you had to wait for the diagnosis while the doctor was out of the country:-( My little boy has a disease that is disfiguring him. He is in the US right now with his father and we are hoping to get our insurance to cover the machines that will allow us to take care of him in Marrakech.

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  20. Jason Avatar

    Reminds me of the doctor on Family Guy – “Peter, you’re going to die ———— when you hear how surprisingly healthy you are!”
    I do hope your little guy is coping well. It can be hard for kids to understand the why them stuff. He’s lucky to have such an obviously wonderful mother.

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  21. Sylvie Avatar

    Thank you kindly sweet Jason.

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  22. Madhu Avatar

    I am so closing my eyes and wishing with all my heart and soul that all the wonderful energy surrounds this beautiful boy and his darling mother and protect them. {{{{{hugs}}}}} Always believe you will be well and you will. The trick here is to REALLY believe.

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  23. Madhu Avatar

    Cannot wait to try Marcel’s cooking when I come visit him one day in his restaurant 🙂

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  24. Sylvie Avatar

    Dear Madhu, I’m imagining you and Marcel cooking together. In my mind’s eye he’s thrilled and inspired — it’s the best kind of healing 🙂
    He has been passionate about organic vegetable gardening these days as well. So I don’t know which will come first – the farm or the restaurant 🙂

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  25. roy lawaetz Avatar
    roy lawaetz

    Marcel is an exceptional child who seems to be acting very mature through it all. Our hearts go out to him that he may adjust through this period and continue to cope with it. His parents love him very much and this will be a pillar of strength. He is definitely a cute kid. We wish Ritchie and Sylvie all the best during this difficult time.
    Roy & Marianne

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