Discouraged, Yet Still Hopeful!

We are still tweaking Bethany’s medication levels.  She’s now back up to 1800mgs. of Trileptal, 20mgs. of Onfi, and in a desperate attempt to get her to sleep more than 3 hours a night and stop eating us out of house and home we have decided to begin eliminating Depakote completely from her cocktail.   So far not much has changed, at least not for the better.  She is still not sleeping more than about four hours a day and she still eats nearly non-stop for all her 20 awake hours.  It’s a really good thing that what she wants to eat the most is broccoli and cucumbers.  Even so, her weight has climbed from 104 up to 125!  She is only 5′ 1″  so this additional weight is a little too much for her tiny frame.

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Bethany is still seizure free, though at times she has been thinking she’s going to have a seizure again.  She’s been spending a little time with her head under her blanket also, which does make us slightly nervous.  Hopefully it’s just a benign reaction to messing around with her meds and not the seizures starting up again.  All the doctors have warned us that the chances of a medication controlling her seizures is slim to nothing at this point in her life, so it’s hard to have an unwavering  faith that Beth’s period of no seizure activity will really last.  Sometimes it feels as if we are hanging on to our hope by thin and threadbare cord.  But hang on we will!  What else can we do really?

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We had been enjoying an uncharacteristically  happy, cooperative non-aggressive, and outgoing Bethany these past few weeks that it  makes what her current behavior is like all the more discouraging and disappointing.   She’s been harassing,  antagonizing, and in general annoying Jerry and Rebekah unmercifully.  She has been so aggressive  at times that  they have had to lock themselves in their rooms.  This behavior doesn’t seem to have any functional reason behind it other than  well… to be annoying.  It just seems to appear out of the blue for no real reason.  Perhaps she’s feeling the need for more attention or it could just be medication related.

Bethany hasn’t had a meltdown in public in a very long time either, but the other night at the grocery store she decided that she wanted to try peppermints.   We don’t let her have hard candy because she chokes easily.   When I told her she couldn’t have them but that she could pick out another less dangerous candy she was not a happy camper.  She proceeded to lay right down in the middle of the aisle and refused to budge.   The best thing to do when she’s in such a state is stop talking, and  give her some space to calm down.  Malcolm went to the car and I hid behind some boxes, my eyes on her the whole time.  After a few minutes which actually seemed more like a few hours she got up and looked around for me.   I called her name.  She saw me then  calmly walked over to me, held my hand, and we exited the store without further incident.  Unfortunately, we also exited the store without buying anything!   The next afternoon we decided to try again and as you’ll see if you watch the video, I’m happy to announce that this trip turned out much better than the first!

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Please don’t judge my video skills.  I new at this iPod thing!

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Today I am linking up with:
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2 thoughts on “Discouraged, Yet Still Hopeful!

  1. I am praying and sending healing thoughts her way. Medications can do strange things to people and it really does take a while to figure out which work and which don’t.

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