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Thread: Nick's neuro appt this morning

  1. #1
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    Default Nick's neuro appt this morning

    Hi guys!
    I hope and pray that all your kiddos are well today. The appt this morning went well - I really like this neuro. He said that Nick's seizures are all essentially the same, just that depending on how well the drugs are working, we only see bits and pieces of them. That explained a lot - so it's not NEW types of seizures, it's just that we are seeing the seizure generalize into tonic (luckily there was no shaking or clonic going on). So... he ordered blood levels for the tegretol and the valproic and he'll increase them if we have room to move. If the levels are already at the therapeutic level, we'll go back to keppra because we know that worked before quite and Nick tolerates it fine. Also, we got 'section 8' funding for (it's not normally covered under the disability pension drug benefits in our province which is why we switched to valproic in the first place). I'll keep you posted - glad we have a good doctor! xo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
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    It's wonderful that you have a great dr. glad to hear that he's on top of everything. Thanks for the great update.
    Mary Grace

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    That's good news! Good luck!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna & Nick))))))

    The neuro's explanation does make sense. Did he refer to these seizures as breakthrough?

    I'm happy you received Section 8 funding for the Keppra. Might be something to consider regardless of the Valproic level, if Nick did better on Keppra. Were his seizures more controlled on Keppra?

    My biggest concern for Jon with Valproic is anemia, a side effect Jon has.

    I'll be interested to know Nick's levels. We're still waiting on Jon's levels. Grrr ...

    Praying for no more seizures!

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad to hear the appt went well! :) That is great that funding for keppra went through! I bet that is a relief to know you have a backup that you know works well for him if he keeps having seizure issues. Hope the levels come back fast!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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