hospital happ'nin's

Going back & summarizing what's been done... (last edited 2/19, 3:30 p.m.)

Motility:
Wednesday was the gastric emptying & motility study. Basically we crammed radioactive scrambled eggs down Lars' throat, very quickly, then rolled him, screaming, in a sheet & taped him down tightly on a flat conveyor belt with a camera underneath. He was required to stay completely still for over an hour while the camera took photos every 30 seconds of the radioactive eggs moving through his stomach. He screamed basically the whole time.

Test showed that while Lars has slowed stomach emptying, 73% of normal, it's not radically slow & wouldn't account for his pain. By way of illustrating contrast, docs described the other study that day of a child who emptied 1% of his stomach during the test.

I'm not sure that under circumstances similar to Lars' I would empty my stomach any faster than 73% of normal. Digestion slows with fight or flight response, doesn't it?

GI:
Thursday night post motility study, the GI attending, Dr. Usedcarsalesprick, came by with his harem to explain why (inpatient) GI was washing their hands of us. "You've had one of the most thorough and beautiful GI workups in the history of mankind..." etc. His demeanor was totally untenable. We didn't even bother to ask questions; I couldn't wait to get him out of our space. Next morning another GI team came (hadn't received extrication message yet) and we asked the lower GI questions. Answer was yes, he clearly has a lower GI motility issue, but no one has ever heard of or seen lower GI causing pain like this. We asked what many people have asked us: what about looking at lower GI, perhaps a colonoscopy? They said he may end up with a colonoscopy, but it would be outpatient. GI will still follow him outpatient.

neuro:
Until Friday night, we had Dr. Betterthanthelastguy as our neuro attending; we actually had him & Drs. Thoughtful & Sneakers here together Friday afternoon. Totally serendipitous, and fruitful. I have written about LP & "normal for Lars" MRI. They're going to try to do an EEG while he's in pain. If not this admission, then next time his pain is predictably episodic. We'll try IV depakote here. Small chance they'll do a nerve conduction test, but as an outpatient if needed. "Not a comfortable test." Everyone says Lars' pain is just not presenting like abdominal migraines.

Once they do all the tests they can think of and don't know what it is, we'll start with medications to treat who-knows-what. Neurontin is the pan-treating, who-knows-what med mentioned most frequently. For seizures, nerve pain, headaches, with fairly benign side effect profile.

All our attending docs switched Saturday because of the weekend. Our new neuro attending, Dr. Thinksdifferently, blew in here rather like a breath of fresh air. Clearly from a different culture, he brightened the room with his energy. Although I didn't like how he pried Lars' eyes open, he's the first neuro doc willing to consider the connection between increasing depakote (depakote = seizure med started 10/19 & increased mid-December) and onset of pain. We told him everyone else had backed quickly away from that question because he's got seizure control with the depakote for the first time. He said, "well no one else has come up with an answer, so I have to think differently. If I don't, I won't come up with an answer, either." Talked about how he's seen serious neuro consequences from depakote use. He said he'd return tomorrow (Sunday).

genetics:
Lars had a full genetics work-up as an infant, but they were pulled back to consult. Dr. Givesmethewillies came & looked at all Lars' body parts as if they were not connected to each other or to a child. They're plugging a few things into the computer. Came back in later & asked if either Lars' donor or I were Amish. No? Ever lived in Pennsylvania?

follow-up on celiac:
Lars was off all gluten for 2 1/2 weeks, including when this latest episode began & ramped up. Combined with negative biopsy for celiac, seems that's not our problem. Hooray for the return of cheerios.

CCS:
(Complex Care Service, formerly known as Coordinated Care Service)
If you've been reading for a while you'll know we placed many hopeful eggs in the CCS basket. They've hatched. For the most part, the CCS docs have been fabulous to work with. Compared with Dr. Grandpa Uninformative & Interrupticus, they've been heavenly.

(By the way I ran into Uninformative in the elevator several days ago. He said, "I heard you were back." I told him Lars was worse than ever, turning blue, purple & gray screaming. He said nothing else during the whole rest of the elevator ride.)

Many specialists can't see forest for their particular tree. CCS are the ecosystem docs. For example, everyone else pooh-poohed our concerns about Lars' nutritional depletion during his pain events, and also while he's in IV fluids in the hospital, but not eating. (The best we had gotten was a shrug & the worst the implication that we didn't understand what his problem was really about.)

The CCS docs had independently had their own concerns about Lars' nutrition, and came to us to talk about it. The g-tube idea emerged separately and simultaneously with CCS, Andey, two friends, and me. Pretty good indicator that we should go down this road. CCS thinking of the whole kiddo.

Harvard medical students do CCS rotations. Dr. Sneakers is back, our resident from Tuesday night. In between we had Dr. Imtoocooltotalktoyou. Not so pleasant. But Sneakers is back & Thoughtful has been replaced by Dr. Kindeyes. We met her briefly in January as she described CCS services. Today we saw her for real & she was so stellar I may have to change her name.

In the absence of other diagnoses, Kindeyes explained, we arrive at "central irritability." When I first heard that term, I thought, "wow, I know quite a few people who would fit under that general description." It's also called "Central Nervous System Irritability / Inconsolability" and "Neural Irritability."

It's a diagnosis of exclusion ("a medical condition whose presence cannot be established with complete confidence from examination or testing; diagnosis is therefore by elimination of other reasonable possibilities"). It happens with folks like Lars whose neurology is severely impaired; the neurons don't connect and communicate with each other like the rest of ours do. The paths are disturbed and the system doesn't respond as anyone would expect it to. I've known that since the day he was born, in my own mama way.

I was curious to read more about it, but wasn't finding much. Kali suggested I try WebMD. I have to say it saved the day. I got these useful links:

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