Grace has been doing much better since she’s been back on her anti-seizure medication.  The episodes/explosions of anger are very seldom and it’s making school and home much more enjoyable for her.   We do continue to see what seems to be involuntary actions/movements and are not sure what is causing them, but feel they could be related to the potential seizure activity.

We were lucky to get video EEG scheduled fairly quickly with Grace’s neurologist and will be heading to Sacramento tomorrow afternoon.

Our appointment is on Wednesday morning and will take 1-2hrs to get Grace all hooked up with the EEG.  The good news is she won’t be admitted to the hospital.  The neurologist has order an ambulatory video EEG which is completely portable.  Grace will be hooked up to the EEG and have a little backpack to carry around and Perry and I will have a separate bag which holds the video camera.  Needless to say we’re happy to know we won’t be spending the 3 days in a hospital room and instead get to spend it with Grace’s Aunt Renee.

Although the doctor has order 3 days, we’re not sure Grace will tolerate being hooked up that long and we are simply hoping she’ll keep it on long enough for good data to be gathered.

And for those of you that miss our daily updates on sodium, you’ll be happy to know were including a special section of this post just for old times sake.  This past Wednesday Grace came down with the first of the school flus that was going around and as always we’re always worried when this happens because keeping an accurate record of her fluid ins and outs is critical for ensuring her sodium levels stay in range.  Unfortunately, this past week something went out of whack.  She never had dumping sessions on Wednesday, Thursday or Friday and when we weighed her Friday night we found that she had gained 4lbs even though her in/out ratio seemed to be okay.  We called the endocrinologist and he wanted us to get her levels check as soon as possible.  We called the on-call pediatrician and he said we’d need to be admitted to the hospital as it had the only lab that could process the blood work STAT.  So Friday night we headed to the hospital and Grace had blood drawn.  I guess the good news is her number was 145 and for those of you that remember our weeks and months of sodium level posts you might remember the normal range is 135 - 145.  That means Grace was actually perfectly in range and once AGAIN the sodium levels baffle us and her doctors.  When we talked to the endocrinologist later that night he said, what so many have told us before, this number doesn’t make sense considering all the other information (fluids in, out, weight gain).  He stressed that unless she started to dump fluids by Sunday he wanted us to drive to Sacramento and have her admitted to the hospital so he could monitor her.  I’m happy to say by Saturday night she started to dump and has been back to normal dosages of DDAVP over the past couple of days.  As always, once we think we’ve figured out this DI issue it smacks us in the face just to let us know who is in control.

Thanks everyone for all the supportive comments and emails you’ve been sending!

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