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Words and meds and more words

12 Aug

This has been the Summer of the Seizure Meds – or “The Great Weaning Experiment”.

After her latest EEG showed no seizure activity, we went ahead with attempting to wean Maura off the seizure medication she’s been on since December of 2007.

When she started on the seizure meds, I noticed that her balanced improved greatly and she started speaking more.  Now that we’re weaning her off them – I’m noticing she’s talking more again.

Funny how that works.

We’re down to 2 mls twice a day, which is probably less than what she originally started on all those years ago.  Last night, as she chattered away, giggling and laughing and being so very “on”, my husband joked “Can we put her back on the meds, just to chill her out a little?”  Because holy cow!  Usually at night, she’s tired.  These days, she’s wide awake.  (Of course, that could be because she’s being allowed to sleep in every morning.  The girl is not a morning person, never has been.)   And the words are coming out more.  Oh, she’s not suddenly “normal” – she’s not bursting with newfound maturity to a degree.  She’s still Maura.  But the words – the songs. She’s singing along with songs much more.  And speaking lines from movies (not in an echolalia way, just along with them) – needless to say, if I say “He’s a llama!” she can say “He’s supposed to be DEAD!” – yes, “The Emperor’s New Groove”, why do we even HAVE that lever? Also, singing along with all of “Let It Go” and My Little Pony songs I didn’t even know she knew.

Knock on wood, but I think it’s going well.

She’s still a bit of a squirrel, still has her opinions and tantrums, but we also have more words.  More words in a row. It’s a gift that I’ll take.

she can't really read yet...but she loves books just the same.

she can’t really read yet…but she loves books just the same.

 

Oh, and Maura decided that she wanted her hair cut.  Why yes, I immediately jumped on that before she did it herself, lol!  We’re back to a bob, and she loves the feel of it on her shoulders.

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Happy with her haircut

 

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13 Responses to “Words and meds and more words”

  1. Chris August 12, 2014 at 2:45 pm #

    Love that girl! Hugs to you both… C.

    Sent from my iPad

    >

  2. Cyndi August 12, 2014 at 4:42 pm #

    Such a sweet smile!

  3. tmadeley66 August 12, 2014 at 7:53 pm #

    More words – exciting news!

  4. Cair August 12, 2014 at 7:55 pm #

    So glad that the weaning of the meds has gone so well. Interesting how her language grew both when she started meds and now that she’s weaning from the meds. Seems like both are what she needed at the time.

  5. franhunne4u August 12, 2014 at 11:14 pm #

    Hopefully her tantrums get less and less frequent when she develops more of an ability to argue her way.

    • phoebz4 August 13, 2014 at 12:00 am #

      That would be the hope!

      • franhunne4u August 13, 2014 at 12:25 am #

        Where there is life there is hope 😉

  6. lexiemom August 14, 2014 at 6:49 am #

    Wow! That’s wonderful that the weaning process is having this unexpected side effect. I hope the best for Maura.

  7. teresamcnally August 14, 2014 at 10:04 am #

    Great news all round

    Teresa

  8. maia August 14, 2014 at 7:15 pm #

    Hi what are her current meds now?

    • phoebz4 August 18, 2014 at 12:09 pm #

      She’s been on Trileptal (oral suspension) since 2007.

      • maia September 2, 2014 at 1:40 am #

        Did it control the seizures?

      • phoebz4 September 2, 2014 at 12:28 pm #

        Yes, it did, quite well. And we didn’t have any bad side effects.

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