E.E.G. testing in progress, encouragement from neurologists

Alex's EEG at Arnold-Palmer Hospital (2/16/2010)

Everything is going good with Alex’s tests here at Arnold Palmer Hospital. Alex doesn’t like all the probes and electrode gel in her hair, but she’s found plenty of TV shows that she likes. :)

Alex’s neurologist Dr. Davis has been by twice to check up on us and explain a few things — and his associate Kay, too. And Alex’s neurosurgeon Dr. Pattisapu‘s partner Dr. Johnson has also stopped by to familiarize herself with Alex and the challenges that we’re considering here.

The best news that we’ve heard so far is that the monitoring is showing that all five of Alex’s seizures last night were originating from the exact same area — right where the pingpong-ball-sized mass is located in her brain.

So the plan is to stay a little longer tomorrow (Wednesday) after the 48-hour EEG and do a fresh MRI of Alex’s brain. Then Dr. Davis will schedule an outpatient “neoro-psych” evaluation, where Alex will be asked all kinds of questions to get a good base-line of what cognitive skills she has right now, to compare with what might be “lost” after surgery.

This is of course very sobering, but it’s good to see all the doctors taking a very measured approach to the surgery option … studying to see what strengths and weaknesses Alex has now (weaknesses including seizures every day) … so we can work toward an outcome that will benefit her most. For example, it would be acceptable for Alex to end up with a few speech issues to work through after surgery if the surgery completely stops the seizures!

So that’s the kind of thing that we’re considering right now as we look forward to the day when Alex will be able to run and play — and even one day drive a car! … without seizures. So we thank you so much for your thoughts and prayers on our behalf!

Happy New Year!

Dr. Ron Davis of Pediatric Neurology, PA

Dr. Ron Davis of Pediatric Neurology, PA

I know, it’s been a long time. So here’s a quick update on what’s going on with Alex.

We talked to Alexandria’s doctors last month and found out that their new, advanced brain-scanning and monitoring equipment had not yet been installed at Arnold-Palmer Hospital. So that’s the main hold-up. But we weren’t too disappointed with that news because it has given us some time to just enjoy the holidays. :)

So for now, we’re just waiting for Alex’s next appointment in a couple weeks to find out what new time-line Dr. Davis and Dr. Pattisapu would like to follow. And in the meantime, Alex will continue taking her anti-seizure medication three times a day — and we pray that the seizures remain mostly under control.

Upcoming “fMRI with grid” testing

Both of Alex’s appointments last week went very well. One was with the neurosurgeon Dr. Pattisapu, and the other was with her pediatric neurologist Dr. Davis. And both specialists are very confident that the best thing for Alex is to move forward with the more invasive testing in a couple months.

So right now we are preparing Alex for that time by changing Alex’s medicines & dosages around to better control her seizures. And so far, the changes seem to be working.

Then, in about a month we will meet again with Dr. Davis to begin planning for the procedure that they are calling an “fMRI with grid” … meaning “functional MRI” (an MRI to watch for specific patterns related to motor function), while applying a “grid” of sensors directly on the surface of her brain.

And that testing will give MUCH more detail and accuracy as to exactly what is happening with Alex’s seizures … and whether the mass that they found in her brain is causing the seizures and/or if it can be surgically removed.

Scary stuff when you start talking about brain surgery on a 10-year-old daughter! But it is in God’s hands, and Kristi and I are both resting in the understanding that SO MANY things have come together supernaturally to get us to this decision point right now.

And we know that all the doors are wide open right now for us to simply walk through … of course with many, many prayers for Alex’s safety and specialized care.

Doctor visit today

Alexandria, in her class at school

Alexandria, in her class at school

Well, it’s quite a bit more than just a “doctor visit,” but you can’t really title a blog entry “Pediatric neurosurgeon visit today.” :)  So anyway, that’s what’s going on today. Alexandria will miss some school in favor of a very important and exciting appointment with Dr. Pattisipu!

It’s crazy to think that it’s already been two weeks since Alex was released from the hospital. But her incisions are completely healed, so that makes sense.

Overall, Alex is doing very well. Although she does still has a seizure or two each day (and more at night), she has adjusted well to both the new VNS implant and the higher dosage of anti-seizure medication. We’re still working with Alex to encourage up to twelve hours of sleep each night — an important factor in how many seizures she’ll have in the day-time — but at least the seizures are fairly manageable right now.

Another relief for us is that we’ve received full confirmation that Alex’s continuing visits with the best pediatric neurologist and pediatric neurosurgeon, although outside her insurance coverage network, are going to be covered 100% by her health insurance! This is not only a relief when thinking of Alex’s last hospital stay that probably tallied more than $100,000 — but it also allows us to move forward with regular visits starting this week!

After Alex’s visit with Dr. Pattisipu today, she has an appointment tomorrow with Dr. Davis, her pediatric neurologist. And from those two appointments, we hope to have a better idea of when future scans and brain-mapping procedures will be scheduled.

My hope is that through the new studies that Dr. Davis and Dr. Pattisipu are about to initiate, we can not only find a cure for Alexandria’s seizures, but also be an encouragement and help to many other families of children who suffer from similar seizure activity.