Tuesday, January 14, 2014

Stopping by at the neurologist

It's been a doctor-saturated week. First, we went to the pediatric neurologist with C. yesterday. Then today it was a meeting with the geneticist without C.

The visit to the neurologist yielded some enlightenment.
  1. C. has lost weight. Now given that my running quip is that she is so thin she's "two dimensional", this should have disturbed me. But the doctor glossed over it, so I'm actually relieved. Any additional kilograms would test my sensitive back and prolapsed pelvis. And given that C. feeds herself - at least, puts the spoon in her mouth herself - I can presume she takes as much food as she wants and isn't hungry.
  2. We learned that when the cause is genetic, the symptoms of neurological impairment cannot be significantly improved by medication. Since C. probably is a genetic case, the doctor warned us that all our dedicated drug-tweaking will not produce seizure control or cognitive improvement. Not exactly welcome information. But we were both surprised that no doctor ever shared this with us before.
The hubby and I both told the doctor that our impression is that C. seizes somewhat less since the last rise in Valproic Acid dosage. (Though of course, still a few every day.) We won't be raising the dosage because of the high drug levels found in the last blood test.

Then we all agreed that the next step will be weaning C. off the Inovelon which never seemed to help her throughout the three years she's been taking it. We'll go down from 400 mg twice/day to 300 mg twice/day immediately. Then after one month we drop to 200 mg twice/day. A month later to 100 mg. And then after a month, we're Inovelon-free.

I demonstrated C.'s MEDEK walking for the doctor. She seemed duly impressed with the way C.'s right leg steps independently.

The doctor said C.'s most recent blood test results were fine. In fact her hemoglobin level was spectacular. (14+). But because we've had C. on the Modified Atkins Diet for so many years (lost track - at least ten), she is sending C. for an abdominal ultrasound to check for kidney stones. Apparently this diet, which is part of our anti-seizure arsenal, can cause stones.

All in all, I have no complaints about the doctor's handling of C.'s care. She's a bit dry and stand-offish. But unlike some neurologists we've met, she doesn't rush us out of her office. In the past I've sensed that they aren't comfortable treating the hopeless cases, like C. And after all why should they be?

Bottom line: it wasn't an uplifting experience. I had hoped that eventually our drug changes would deliver some cognitive improvement - even a smidgen and we would have thrown a party. Now, disillusionment reigns.

A post about the geneticist's visit will follow shortly.


Anonymous said...

Hi there,

In my experience doctors are frequently uncomfortable not just with "hopeless cases", but with cases that are simply difficult. You know, because you spend every day with her, that C's quality of life can be improved in many ways. It might not be full seizure control, it might not lead to marked cognitive improvement, but fewer seizures is itself an improvement. Improvements add up!!

I find that I have to seek out doctors who are interested in their patients, who are creative, and who are brave to get care at all. I have had doctors, physical therapists, family and friends think up amazing little things that have reduced my pain, increased mobility, and made life enjoyable. I love reading about C's successes because you seem to get that she so deserves to have successes!


The Sound of the Silent said...

It's always nice to hear your thoughtful comments, Erin. You understand our goal perfectly: even the slightest advance in any area of C.'s life is a major achievement for us.

Over the years, numerous doctors have, through their comments, demonstrated that they just don't get this point. For them, it's either cure, improve significantly or abandon.

I'm glad you have succeeded in gathering a diverse team that is dedicated to supporting you with both the big and "little things" in your life.

Your observations and comments are always welcome here. Thank you.