Warning: This is a boring Vista medical/health update and also a bit of a novel. If you’re not interested, you should go check out @Psychmamma’s pretty snow pictures instead

Sooooo… yeah.  Way back in November I wrote about how Vista hadn’t been doing well.  I originally suspected her sudden weight loss, rash, lack of appetite, etc were due to the new anti-seizure meds she started at the end of October.  Of course, being just a mom, I was pooh-poohed, and told it was just viral.  I wasn’t convinced.

I really wouldn’t have fussed it too much, had it not been for the 10lb weight loss (which left her looking frail), and the fact she stopped having bowel movements altogether.

I finally took her into our family doc, who is awesome.  We decided to rule out EVERYTHING it could be, until the only option was the meds.  He ordered abdominal xrays checking for a blockage or obstruction, as well as a blood panel checking for diabetes, cancer, thyroid, you name it.  These all came back normal.  All of them.

It was time to call her neurology team and tell them she was still not well.  Every other possible explanation had been ruled out, and, as it was right before Christmas, I wasn’t buying a virus that had lasted two months, especially when all her blood counts had come back normal.

They agreed, and we decided to keep her on her meds over Christmas and bring her in early January to discuss options. Then the nurse mentioned that perhaps we could try splitting her med dose.  She didn’t think it would make a difference, but it would be something else to try until we went in to see them.

So, rather than the full dose in the evening, she now gets half in the morning and half at night.  And guess what?  Rash? Gone.  Bowel movements?  Returned.  Weight loss?  Stopped.  *poof*  All her symptoms magically disappeared.

We’re still not sure why she was reacting so badly to the full dose (she is still solid in her status as the ‘little anomaly’) but we’re just happy to have it figured out.  For now, we’ll leave things like this as they seem to be working.

Our project now is to get her to put some of her weight back on.   At 38lbs and almost 3’6″, she’s too slim for her big frame.

The other thing we had going on during this, is the first part of her pre-surgical testing (in preparation for the possible eventuality of brain surgery for her epilepsy).  This was a neuropsych evaluation that tested her IQ, cognitive abilities, and other brain functions.  We got the results right before Christmas, and the results were… interesting.

She has problems with impulse control (so telling her not to do something can actually make her do it.  Doh!) and executive brain functions (these are to do with planning, abstract thinking, troubleshooting, stuff like that).  These are consistent with her abnormal EEG and the spiking they saw in the back of her brain.

So, what does this mean?  Essentially, that V could be a danger to herself.  She can’t stop herself from touching a hot stove if her brain decides to do it.  It means, as we already knew, she requires constant supervision.  It also means that we’ll need to change some of the ways we parent her, because they’re not working and they’re not ever going to work.

The neuropsych team has written a recommendation that V have a behavioral aide with her, so I will be putting all the papers together tonight to get the application in place for that.  That will take some of the stress off us, I think.

They also recommended further testing.  When she’s older they would like her to have a MRI neuropsych eval, that would fully map her brain functions.   The next step, as far as the surgery goes, though, is a 5 day hospital stay, with her hooked up to an EEG machine and video monitored, while we pull her off her meds and hope she seizures.  Yay.  There’s no date set for this test, yet, and I’m, quite frankly, in no hurry to do it.

For now we’re in a holding pattern.  As long as her meds keep working for her, and we have no more adverse reactions, we’ll keep things as they are.  And keep our fingers crossed.