8years old

Ella turned 8 in August, It’s been 2 years since weaning off Keppra. It has been 4 years since the last seizure. I still worry about them every single night. She is in second grade. She is a great student, well liked, and doing so well in school. We are still taking lots of supplements for mitochondrial support.

She still gets the occasional sparkly limb. She has taken up sleep walking since the Keppra wean. That happens a few times per week. The other morning she wakes and tells me 40 min after wake up that she felt shaky for a while after waking (but she ate, read and talked to me during that time and I noticed NOTHING). So….we still have some ‘stuff’ happening which for most parents would not be very alarming at all but for us it keeps those seizures in the forefront of our mind.

We keep all the families out there struggling w/ BRE in our thoughts and prayers. It is a very scary disorder.
THANKS for reading!

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4 Comments (+add yours?)

  1. Shona
    Feb 09, 2015 @ 23:27:49

    Hi there, my son has BRE also and wondering what supplements you gave to your daughter. Wondering about b6 and how much to give my son. He is 6 yrs old. Thanks so much for your post. Really inspiring and encouraging to know that my son will most likely grow out of this😄

    Reply

    • brendasw
      Mar 02, 2015 @ 21:39:10

      Hi,
      A list of supplements can be found in blog. The supp’s we give/gave were not random, we had specialty lab work which found definciency’s and overall mitochondrial support was/is needed. For the b6, google it… I think we gave 25 mg of B6 (not sure if that was 1x or 2x per day). The blog probably gives the specifics. I cannot remember. The dosage I speak about in the blog is for my 4-6 yr old. That’s how old she was when on the Keppra.
      Good Luck!

      Reply

  2. Brennan Sang
    Mar 02, 2015 @ 21:18:00

    Thank you so much for sharing your story. I have a 4.5 year-old who was recently diagnosed with BRE. Being able to see your journey from beginning to end has given me a bit of comfort, and for that, I can’t thank you enough.

    I wish you and yours the best!

    Reply

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