The Dino-Aspie Ex-Café (for Those 40+... or feeling creaky)

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Wow, we just found out what it's like to see a world-class medical specialist.
For two and a half hours.
He wants to do a lot more tests.
Wants to send the kid's DNA to Baylor.

The insurance company and HMO are bound to put up a fight against this because of the cost, but he seems as if he's actually on the track of something and so I'm prepared to go wolverine-mom on the HMO if they balk at the new tests and his request to see us again. This is the first real glimmer of a chance at knowing what's going on we've had after jumping through hoops for 10 years and I'll be DAMNED if any bureaucratic nonsense is going to stop this from moving forward.

We're jokingly calling him Dr. House, although he isn't cranky at all.

Sic 'em, Nan!

We do like answers, even better than questions.

That's good news, Nan. It's a shame you've had to waste so much precious time and energy negotiating bureaucratic systems instead of receiving actual help.

I think that even among records I've held for ongoing bureaucracy fights, this has to be the tops. It's been over 10 years. The kid rolls off my insurance in January and goes COBRA for 18 months at $500 a month... sigh... and they just announced we're under mandatory furloughs because of the state budget. Well, yeah, I've gotten a lot more pushy and obnoxious about making things happen. It's not my normal style (I'm a "run away, run away" kind of person) but it has to happen to make things happen and the clock is ticking down to where she won't have any health insurance at all. So yeah, I've got the file out and am sharpening my fangs daily now.

It shouldn't have to be like this, but at least we got to someone who seems to have a clue and who is ordering the tests that all the literature I've read in the last ten years said should have been ordered early on, but that weren't done. I figure it like this - I have until January, and then 18 months (or as long as we can pay the COBRA premium) to get a firm diagnosis. For some of them it would mean knowing what it is but that there was nothing we can do, for some it would mean there was a treatment she should have been getting all these years and can now, hopefully, start, and for some it would mean she would have to be kept on my insurance by federal law. There's a lot riding on all this, really, or I wouldn't have been fighting it so hard for so long.

For now, we have to wait and get "the letter" from the specialist, when his typist has it done, and then take it (after photocopying for safety) to the HMO and start arguing again. Then I have the name of the person who is supervisor to the head of the lab where the blood (etc.) would be drawn and their personal assurance that if we call them in advance, the tests will be done properly (or heads will roll). Nothing to do until the letter is ready. Kid's off at ComiCon and it's hot outside today. Hope it's cooler down by the harbor. (wince)

My hair has gone almost totally silver now, and people wonder why?

At least the meeting rooms in the Con are air-conditioned - they have to be, some of my fellow geekboys and -girls are only casually acquainted with the concept of the shower. (Just one of the behaviors that caused my wife to label Comic-Con "the International Asperger's Convention".) Hope she doesn't stay in any of the outdoor pavilions too long, though, and it's well for her that you don't have to stand in line to buy passes any more...

Yeah, we've done Con for many years and know what to expect. She took the trolley down at about 11:00 and got right in (special pass). I got a call from her around 12:30 that she had met up with some friends and they were having a great time. I got a call at 3:00 saying she was overloading and wanted to make arrangements as to where to meet (I was picking her up after work). I had her in the car by 4:00pm and she wasn't looking good, but said she'd had a great time but had been in serious overload for two hours but didn't want to call me at work to come get her. It was hot out, but not blistering. I don't think she has a handle on the cumulative effects of not-blistering yet. Short time of really hot is bad. But a long time of kinda hot can be just as bad.

Apparently Johnny Depp showed up and caused a near riot in the Disney room. Yes, it's always nerds-on-parade, but this year (and for the past couple of years) there are an awful lot more civilians there to try to see someone famous, it seems. The Torchwood people and the Dr. Who people are going to be there on Sunday. Am sorry to be missing that.

Anyway, we picked up a small pizza to eat when we got home within an hour, ate, and while we were watching the Torchwood mini-series she was hit by a really bad headache. Sounds like a migraine me, but I'm not sure. She barfed the pizza, and is laying on a mattress we have on the floor in the den directly under the A/C vent with all the curtains drawn, kind of rolled up in a ball with a bag of frozen corn on her head, wimpering a little. I don't know if it's a coincidence of going to Con and the heat, but this seems to be a really bad headache. I think she's near to finally falling asleep so I don't want to bother her with a thermometer or to check her pupils, but it hit like a bolt. Poor kid. It's been a hell of a week. I would bet she'll be home tomorrow, sick. I was planning to be on vacation myself, tomorrow, to do somethings that I've been putting off. I suspect I'll be playing nurse again, instead.

I sure hope they can tell us what the hell is going on.

Wow. All I can do is send you good wishes and energy.

Overload, stress, heat, what a mix, poor kid.
And then that stresses Mom, whose hair is going to look just like the silver service tea set in abut a week if this keeps up.

As far as the insurance, Go get 'em lioness

damn, I wish I had the money and health to go halfway across the country to comi con, in the city of my birth but can't stand being packed in with a bunch of people in the little metal tube of a plane, train, or bus

You'd probably be disappointed. The Con has really changed in the last few years. Time was when it was full of nerds dressing up and small vendors, with the "old school" displays and speakers. Corporate has taken it over - it's gone "family entertainment" now with lots of younger kids in there on the first three days (used to be only Sunday was "family" day) and is heavily promoted/occupied by the big studios and the big toy manufacturers. The kind of people who started it can't even afford a booth there now. Sadly. And there are very few Klingons, etc., walking around there these days. There are some, but not like it used to be. Once upon a time you would be the odd person out if you were NOT in some kind of costume.

Sci Fi (excuse me - scifff feeeee now) had a brilliant ploy - they've taken over one of the empty storefronts down in the Gaslamp Quarter, near the convention center, and built a replica of the Cafe Deum resteraunt from Eureka.

Time marches on, I guess. I know there are alternate cons around the country - you might check. I hear there's a decent one in NY. We went to Anime con in LA a couple of years ago. Not bad, smaller.

But if you did come, and would have had problems on a plane, remember that there's like 125,000 people a day going into that hall. It's a zoo - that's what brought on the kid's migraine. Flashy lights, noise, too much crowd, heat, and organized chaos. Which, I guess, some people find enjoyable.

A dearth of Klingons? Do they at least still have the crew of the IKV Vengeance put on a demonstration of Klingon life? (Last time I went, they did an ascension ceremony - used neon tubes for the pain sticks.)

'Course, if I ever went to SDCC again, it would be to shop and gather autographs - Randy Milholland (Something*Positive), Peter David (too many things to count - most recently, the comic book X-Factor and the script for the video game Shadow Complex), Jhonen Vasquez (I have a hardback of Johnny the Homicidal Maniac that really needs a signature)...

Maybe I should just keep an eye out for them at the next Emerald City con in Seattle, now that they've finished the light-rail line from Tukwila to downtown, so I only have to drive about halfway and don't have to deal with city traffic. That would have the advantage of a guaranteed appearance by both Wil Wheaton (actor and author, best known as Wesley Crusher of [i]Star Trek: the Next Generation), as well as Tycho and Gabe of PennyArcade fame.

I'd say go for Emerald Con. I mean SDCC is what it is, and a lot of people are having a lot of fun, but it's not what it used to be. I remember going to a panel consisting of Ray Bradbury, Ray Harryhausen, and Isaac Asimov and listening to them discuss "the early days" of the genre for two hours. It was really a good panel, but I bet it wouldn't fly now.

Dunno how Con is this year, really, other than what I see and my "inside" reporter. The kid stayed home all day and rested but is working Con this evening so she had to go in. I just got back from dropping her off. Thankfully, it's much cooler down there today - I'd guess in the upper 70s. Hope she can manage - I mean, I can't tell her to not try to do ANYTHING, or she'll start thinking she's an invalid. That most certainly will not help anything we're dealing with. Attitude is a whole lot of how things turn out....

Peter Jackson's been lurking down the Con for a couple of days, and the kid says she saw the guy who was the Wookie in Star Wars on Thursday. (I guess eventually I'll ask her how she knew it was him?)

Deacon - I've been informed by She Who Knows All that there were several crews of Star Trek folks there at Con on the other days. Plus a fully-uniformed Neil Armstrong (how nice!). The storm troopers were also there. You can breathe easier. Traditions have been upheld.

Last edited by Nan on 02 Aug 2009, 10:36 pm, edited 1 time in total.

He has not seen the last five years of medical records.

Sigh.



Ok, I need to find Chuck. I've lost his email address. Can someone forward a message to him for me? Thanks.

Last edited by Nan on 02 Aug 2009, 10:17 pm, edited 1 time in total.

Lurking and Stimming....

There are only three amino acids beginning with t, threonine, tryptophan and tyrosine. It's probably one of those worked over by a spellchecker.

It is possible that this is the first record of the mutation, and nobody knows what it does. Knowing the amino acid substitution alone doesn't tell you all that much. You'd need to know how the substitution changes the shape of the protein and you'd need a pretty good idea of what the protein does and how. Then you could make a guess what the effect of the mutation is.

Gromit makes lots of sense.

http://en.wikipedia.org/wiki/Codon#RNA_codon_table

There's no "T" in DNA, so that's wrong as well.

A -> G is indeed implied by Threonine -> Alanine
C -> G occurs in Proline -> Alanine
U -> G occurs in Serine -> Alanine

Straying a little,

U -> C occurs in Valine -> Alanine
A -> C occurs in Aspartic acid -> Alanine
G -> C occurs in Glycine -> Alanine

That's all six possible single base amino acid transitions to alanine.

Neither my mozilla nor my OpenOffice spell checker gets "training" from any of the above.

========

Oh... and PS. Yet again, I dropped off the "Watch" list for the thread. I've been doing a bit of a catch-up (waves cheerfully at new posters).