Saturday, June 13, 2009

Alice Goes to the Neurologist

On Friday, Alice had a visit with our favorite doctor, Susan Arnold M.D. (pediatric neurologist at Children's Medical Center in Dallas, Texas).

Dr. Arnold's office is in the Purple Pavilion. I love that name! It's a building near the hospital where there is a lab and clinics and such. The parking is very user-friendly and the building is easy to navigate.

After we check in, they bring Alice back and check her vitals. First, her blood pressure:

Then her weight (she has gained a little weight -- yay!):

And her height (she's settled in at 4' 6.5" which is probably where she's going to remain):

Then we go into an exam room and wait for Dr. Arnold. We read books and chat while we wait. We're always delighted when Dr. Arnold comes in! She's just the best.

Dr. Arnold checks Alice's reflexes to see how her body is transmitting signals to her brain:

Then she listens to Alice's heart:

She looks into Alice's eyes very carefully to see how her pupils change in the light. Alice's pupils are difficult to see because her eyes are so very dark brown.

After checking Alice's field of vision very carefully, she then asks Alice to walk across the room to observe her gait:

After the exam, we discuss Alice's seizures and medications and she tells us what our options are. Alice's seizure disorder is of the kind that is unlikely to disappear with medication, so we are concentrating on managing the seizures in the best way so that she can function as normally as she possibly can.

We have several options to consider next. There are a couple of new drugs, one that's actually currently in clinical trial there at Children's. We are pretty seriously considering participating in the clinical trial, since Alice seems to be a good candidate for this medication. After the clinical trial, we will probably have a VNS implanted in her chest. This is a pacemaker-like device which sends electrical pulses into the brain instead of into the heart. It sends regular pulses, but is also able to be activated by Alice herself when she knows she's having a seizure. She would wear a magnet bracelet which she could place over the VNS site to cause it to pulse and -hopefully- arrest the seizure in progress. The VNS isn't a cure-all and probably won't prevent all her seizures, but it has a good chance to decrease them a bit AND it will give her a sense of control over them.

The final option is to employ the ketogenic diet. I think we'll reserve this option as a last resort; she likes fat and protein, but would find the restrictions difficult to understand. The potential benefits don't outweigh the negatives at this point. It's still an option, though, that we can use if we need to.

Tomorrow, Alice leaves for Camp Spike n' Wave, the camp for kids with epilepsy that she has been attending for two years already. Dr. Arnold was the one who first suggested Camp Spike n' Wave, and we are so glad she did! Camp is free, which is good because we couldn't possibly afford to pay her way to such a place, and it's the thing she looks forward to all year long.

Sometime after camp, Alice will return to Children's to spend a couple of days in the Epilepsy Monitoring Unit. Dr. Arnold wants to see what kinds of changes she's experiencing with her seizures and see what effect the meds have had. It's not fun to have all those electrodes glued to her scalp, but she's a good sport and tolerates it. I think this time around I'll bring some sort of foldaway cot to sleep on; the chairs in that place are just not conducive to decent sleep. I really really really really wish they'd install wireless internet there, too... but it may be that they can't because it interferes with the equipment on that particular unit. Just the same, if there were a hot-spot somewhere in the hospital where I could tote my laptop and check e-mail and blog, it'd sure help us stay connected to the outside world.

Big day today -- gotta get packed for camp! I think we're also going to go see the new Pixar movie this afternoon. Yay!

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