Jessi update

I've had several people ask for updates on Jessi and our adventures with epilepsy.  Thank you all so much for your thoughts and prayers!  Your support is so greatly appreciated!

I spoke with Jessi's neurologist for a while today.  I was under the impression that epilepsy surgery was out of the picture, but doc says there are a couple more tests they can run to see if it is a possibility, and the EEG we did 6 weeks ago was largely inconclusive.  While part of me is terrified at the thought of brain surgery, if we can stop or even virtually stop these seizures, I would be absolutely thrilled!

The two tests we can run are very expensive.  Doc is trying to clear them with the insurance company now.  We have good insurance, so if the tests are deemed necessary, they will probably happen.  One of the tests is a PET scan, which is kind of like an MRI or a CT scan.  Here's a link for details.  http://www.webmd.com/epilepsy/pet-scan-epilepsy

This is an interesting link too, but the jargon gets very technical.  It describes the other tests we may have to go through.   http://www.ajnr.org/cgi/content/full/20/4/534

At this point, we are willing to try whatever we can.  I would rather go through these tests and eliminate the possibility of brain surgery than get a Vagel Nerve Stimulator implanted and have it not work.  The VNS is permanent--small electrodes attached to the Vagel nerve.  I've read about some nasty side effects when it doesn't work.  I've also read about great results--virtually eliminating seizures--when it does work.  It works like a pacemaker, and sends impulses to the brain to try and regulate brain activity.  It has no side effects for most people.  Painful side effects for some.  And if Jessi had those side effects, she would just be grumpy--she wouldn't be able to tell us how she was feeling or what was going on.  Everything has to be observable, or we can't help her.  The autism definitely complicates things.

In the meantime, we are adding another medication to Jessica's list.  She will be on 3 medications for her seizures now.  I told the neurologist that I wasn't convinced any of the medications have worked for her, and he agreed with me.  It is nice to have him agree with me.  It makes me feel like I'm not delusional or paranoid or overly impatient.  I have moments when I feel like I shouldn't whine so much.  Some kids have multiple seizures every day--so much worse off than our Jessica.  But every time I think I wish we were only dealing with autism, I see that something has to be done.  We may not be able to do much for the autism, but if we can do something about the epilepsy, we're going to do it.

We are also going to make some kind of arrangement where I can contact the doc if Jessi has a seizure in the morning, since she usually clusters on a day she's having seizures.  Usually--she hasn't clustered for a few weeks now, actually.  Anyway, on a day when she has a seizure in the morning, doc is trying to arrange for me to be able to call a number and talk to someone at Primary's who knows exactly what I'm talking about and will let us bring Jessi up and hook her to the EEG for the day.  Ultimately, getting a seizure on record will give them the information they need, and it would be the best, easiest, and cheapest way to get that info. 

Anyway, there's the update.  Not much to report yet, actually, except that we've got more waiting to do, more questions to ask, more hunches to test.  *sigh*