Monday, June 11, 2007

Q news

The visit with otolaryngology was good. The resident and attending were both funny. The attending kept calling Q "her" and then smirked, laughed and made jokes at himself (with the resident's help--rare, that) for not noticing the blue blankie which reads "Little guy on the go" and the boy clothes, etc. The attending also joked, when noting that Q's ear canals are nicely formed, that he's going to invent a disease that causes large ear canals. All he'd seen that morning were tiny ones. Heh. I told him that S has the tiny ear canal thing covered for our group so Q doesn't have to take that on, anyway.

I've also just recently heard from Q's geneticist regarding her contact with Dr. William Dobyns at the University of Chicago about Q. Upon review of Q's MRI, Dr. Dobyns says that it's definitely PMG goin' on in there. The least affected area of the brain is the anterior to mid-frontal lobe. (This explains the boy's excellent sense of humor, I think.) Q is apparently short on white matter. There's more, but I don't know what it means and I'm not sure it would matter if I did, at least not without interpretation from the expert. Dr. Dobyns is the man when it comes to polymicrogyria. I was encouraged to note, when I began searching terms online from the mini-report, that Q's geneticist oftens publishes and presents in conjunction with Dr. Dobyns. I find this comforting. Polymicrogyria is a teeny little almost not even there section of known brain anomalies. Dr. Dobyns and a couple of other guys in the world are qualified to address this with adequate context and provide any further info as far as life expectancy, etc.--one in Australia, one in Italy (I believe this doc specializes in seizure activity in PMG patients), maybe somebody near San Francisco?

I am thrilled to have a little more definitive diagnosis, but must admit to some anxiety as to what this means for Q. While I haven't given up on him walking, as all the parts begin to come together, I am realizing that if just getting to be able to sit up is such a process and a struggle, other things we all hope for may never show up. And? It'll be okay either way. I've wrestled with the whole G-tube thing the same way: horrified at the very idea of Q needing anything so dramatic, more horrified at the implications of him needing it and not getting it. Fortunately, the ear infection is on the outs and he is eating a little better.

I've been feeding him Yo-baby thickened with DHA-added baby oatmeal or stage 2 fruits or veggies with a little cream or half and half or coconut milk, then thickened again with baby cereal. Anything to get those calories up. When I had him in on Saturday for the ear infection, he weighed 24 lbs., 4 oz. I'm praying that the gains haven't been lost in this last illness. Goodness knows, that pound between 23 and 24 has been touch and go since February, seriously freaking me out at times. I mean, the reflux is bad enough that the ENT thought that he may be having a little washing up into his sinuses, so he's now on Rhinocort, for any possible inflammation he might have there that's causing the odd "snortiness" at night. So the reflux is also bad enough that Q often spits up and gags a little if laid on his tummy or slumps while sitting up. His tum empties slowly enough that a third meal at midday is currently out of the question--it'll just come back up.

Just before he got sick, he had really been loving the texture in "riced" macaroni and cheese (organic) mixed with stage 3 green beans and rice. He even appeared to be actually chewing, as opposed to the immature "munching" reflexive motions seen at the feeding clinic visit. So I've been quite hopeful about avoiding a G-tube altogether. Then all this gagging and spluttering with the crud in his throat and I've felt like any hope of him making progress with feeding is gone. Tonight, though, he was handling meds better, sucking down apple juice as quickly as I could safely dribble it into his mouth with the syringe. Maybe tomorrow he'll be excited about the nosey cup again?

Either way, at least he's feeling a little better. Bonus: in addition to his reacting to Amoxicillin, he turns out to be allergic to Omnicef (only 3% of kids are, but then, we don't do anything easy, do we?). Same rash, but the Amoxicillin event was sort of like a sideways tear-drop, about 2 1/2 " long, sort of adjacent to his belly button. The rash today was the front of his whole torso, up his neck to his chin. He was better after Benadryl, but it takes a while for any drug to leave one's system, so we'll see how he is in the morning. He's been switched to Zithromax. Fingers crossed, eyes heavenward.

His therapies are going well. He has glasses, which make us all think of him as "Q Potter". Heh. He sees so much better with them--his tone and coordination in his arms goes up when he has them on. His favorite thing to do is get his fists up , knock the glasses off the bridge of his nose, and chew the nose-pads. The little stinker. We now have a tiny little patch to affix to one lens to make that other eye work harder at crossing the mid-line toward his nose. He'll have boots soon to prevent his feet from dropping any more than they already do, the neoprene mitts are on the way, his weight bearing mitts are here, but need some tweaking. It would be helpful if I could remember to take them in to the appointment, huh? He's very "verbal"--vocalizing in appropriate tones to coincide with questions asked, at appropriate intervals to request more of an activity or to let us know when he's just done, already. And he smiles most of the time, gurgles and coos like a champ--a terribly engaging little man.

So that's the news from here about Mr. Q.

How're you?


Carolyn said...

Polymicrogyria! I first heard that word in a doctor's office when my daughter was seven years old. It was accompanied by things like "descension of the cerebellar tonsils" "dysgenesis of the corpus callosum" "hydrocephalus" and "Arnold Chiari Malformation." We've been able to ignore all of them, for the most part, except for the hydrocephalus, which is behaving nicely.

I've been reading your blog for a while, and your mention of PMG has brought me out of the woodwork. When I'm not wearing my nurse's hat, I homeschool, knit, try to be musical, and think of creative ways to avoid cleaning. Like de-lurking.

C said...

Wow, Carolyn. I'd love to know more about your sweet girl's story. My email: 5 little classical ducks at gmail dot com (spaces removed, symbols inserted).

I've heard many of those same terms, but none have stuck. Lissencephaly was the first official diagnosis, but PMG appears to represent what's really going on with Q's brain.

I'm off to figure out some creative ways to avoid cleaning too. ;o) Thanks for your comment.


Old Dominion Heather said...

I know what you mean about the comfort factor of knowing that your doctor is good, REALLY GOOD. Ds7 doc in NC is one of three that writes about his type of vision thing. I find it comforting, too.