Saturday, August 16, 2008

doctor week

Well, the past week or two somehow managed to be "doctor week" - Evelyn had a variety of appointments, all of a "routine nature" - all were monitoring-type appointments we've been working on for some time - they just managed to coincide in the same chunk of time. ;-)

24-hour EEG - Neurology
On 4-Aug, we went into CHOA-Scottish Rite for a 24-hour EEG. Thought it sounds "pretty scary", it's a pretty "normal" check - essentially exactly what it sounds like - wiring Evs up on an EEG and video for continuous monitoring over a full day. It'd been a while since we really had any good captures of seizures on EEG, so that was the main impetus for the test.

Though we got there around 8am, Evelyn wasn't really wired up until at least noon. Other than having a bundle of wires glued to her head and being confined to a hospital room, it was really a pretty normal/unobtrusive day for her (as normal as any day spent in a hospital can be). Evelyn flirted with the nurses & doctors; she & Kim played, read stories; etc.

My folks graciously came by after their work-days to watch Evelyn while Kim & I ran to get some dinner. I stayed with Evelyn that night (where she let me know that as fun as the hospital had been that day, staying in it overnight was not, in fact, acceptable ;-) ...), and Kim came early the next morning, remaining there until noon the next day.

The overall results were largely "as expected" - we got some confirmation that a lot of Evelyn's little "jerks" during the day are, in fact, small or partial seizures (over and above her "obvious" seizures). While that was something of a downer, we finally resolved that we thought she was doing really well before the EEG, and a simple EEG certainly didn't change how well she was doing - so on we go. :-)

Coming out of this, we did decide with Evelyn's neurologist to try a new medication; specifically, one to cover a broader "spectrum" of seizure types, as were seen on the EEG. We will start Evelyn on Lamictal in the near-future, as soon as a Ketogenic Diet-friendly and small enough dose can be determined and agreed-upon between her neurologist & dietitian. See, Lamictal's smallest tablet is 25mg, which is too high of a dose for Evelyn to begin on (Lamictal, as with many anticonvulsants, have to be ramped up very slowly). There is a 5mg "chewable" version, but it contains some level of sugar (contraindicated with the Ketogenic Diet). A complicated lady... ;-)

Consult - Endocrinology
Because a big part of Aicardi Syndrome is a "mid-line" issue in the brain - that is, the agenesis of the corpus callosum - endocrine-system issues are not uncommon. So, we had a first appointment set up with one Tuesday 12-Aug. Kim was very happy with Evelyn's new -ologist, and he ordered a few labs, but was not overly concerned with anything at present.

However... Evelyn didn't really feel like donating any blood to the cause. We did attempt to get some blood during the sedation for the MRI (below); however, she still just didn't really want to share. ;-) So, we'll be going in for another stick another day.

MRI - Otolaryngology & Neurosurgery
This past Wednesday, 13-Aug, we had an MRI scheduled for Evelyn. It took some late-game finagling, but we finally managed to get two different doctor's practices to get their results from a single test(!!!).

Evelyn's Otolaryngologist (a.k.a. ENT :-) ...) wanted a face & throat MRI to get a look at a small piece of tissue in the back of her throat. It's just a "watch item"; nothing of really any big concern, but he did want to get a "proper" look at it.

Evelyn's Neurosurgeon wanted a CAT scan of her brain, just for her semi-annual check-up on her fluid & cysts. He decided to order the CAT scan, as though an MRI produces a better image of soft-tissues, takes longer than a CAT scan, and thus requires sedation, especially for a longer MRI. Moreover, since this is just "fluid monitoring" - the rougher image of a CAT scan would be fine.

This, however, this left us in the situation of having Evs to be both sedated for an MRI and then blasted with radiation for the CAT scan. In the same day. Through a bit of fancy phone-work and sweet-talking (hint: talk to the nurses, not the office staff), we finally managed to get a single MRI to cover both doctors. So, we went in early Wednesday morning to begin that. Regrettably, since it requires sedation, it easily triples or quadruples the amount of time otherwise required for the MRI.

At any rate, the MRI (and sedation) went off largely without a hitch, and results from both the Otolaryngologist and Neurosurgeon were positive - no cause for concern for the piece of tissue in her throat, and no change in her ventricle size & cysts. Thus, we'll now move to annual checks on her noggin (yay!) - via CAT scan. ;-) As noted above, we tried a blood-draw for Endocrinology, since an IV had to be placed anyway for the sedation, but Evelyn lived up to her reputation as a "hard stick" and being stingy with her blood. ;-)

In general
Anyway.... other than "lotsa doctors", we've all been doing pretty well. Evelyn has, as usual, trooped through all of this, probably with more of a "spring in her step" than Kim & I. :-)


Anonymous said...

Hey Daniel! Thanks for the update!!

Anonymous said...

P.S. Anonymous is me... ;)