Tuesday, July 24, 2007

tags, facts and leaps (and recipe!)

Note: check out By the Bay's latest post. It's a recipe roundup for another gluten-free blogger, who apparently has a range of allergies. She almost has as many as one of the boys!

Should be a rich post for folks looking for dairy free, gluten free, nut free foods - myself included. Thanks, BtB.

So, San Diego. Or, as the Toddles says, 'go Saniego? dere Saniego?' No, hon, it's Providence.

San Diego might have been beautiful - I don't know. We saw bits on the way to and from the airport, and it was lovely. I especially liked the carved out of a hill thing they've got going there. More important, though, was the people.

I remember doing this early on in the life of the Eldest, I just stood in the room full of families and individuals dealing with bleeding disorders, and my jaw hung open. Gee, they are all like us. I did the same thing when I met another mother of a kid with food allergies. Oh, there's more like us. Each new diagnosis, each complication, plot twist and curveball made us feel more isolated, more odd, harder for the doctors to predict and manage. It sucked.

Since then, I've stopped looking for for doppelgangers, but if you ever meet another family managing bleeding disorders and allergies whose list trail down your arm, do let me know. But I relish my belonging moments where I can find them, and I kinda, sorta had one in San Diego.

There we were, the Eldest and I, tired, hungry and slightly smelly in a room full of people with bleeding disorders and quirky immune systems. If I didn't push the resemblance too hard, it worked - but most importantly, these were people who the docs didn't see coming, folks whose bodies were stubborn, different, funky. I could relate, no problem.

They were also in wheelchairs, using canes, cradling bleeding joints. I couldn't relate. We haven't had a major bleed in months, just stubborn minor bleed after minor irritating bleed. The difference is to be relished.

So, what's new in the world of inhibitors? Not so very much. Lots of desperate people and worriedly guessing doctors. Off-label uses abound, people were scrounging for ideas, talks about research were rapidly unravelling into 'well, this happens to me' or 'this is what we've seen in him.' Yes, I was part of that. I was also the annoying one who said things like, 'when you say 'normal survival study,' how would you define that?' Heh.

Here's what I learned: the Eldest's survival study, or how long the clotting meds last in his body, would not be considered normal by the experts I spoke to. (When you say 'expert,' what parameters are you using to establish that status?) In fact, they'd consider him to still have an active inhibitor, albeit one operating at a very, very low level - a level so low that it's indistinguishable by the available assay. So what? The clotting meds *do* work, so who cares? Well, we do. An inhibitor (antibody to the clotting protein, see here about halfway down for the definitions) that is gone is less likely to recur than an existing one is likely to spike. Great.

No drama here, though - the Man and I have suspected and argued this for years, the Man having done so far more effectively than I, by producing models of the Eldest's various survival studies and showing how the metabolism seems to be operating. By now, we have enough data points, I'd say. So it's almost a relief to have this confirmed.

Here's the really interesting bit: there is a link between inhibitors and allergies. They are different immunoglobulins (the Eldest's allergies tend to be a classic IgE, while inhibitors are usually IgG), but the hyperactive immune system is what drives them both. Obvious, no? But not to most hematologists, who don't consider the situation from a hematological-immunological perspective. Our hematologists are more classic coagulation specialists, and tend to think inside their box. Similarly, the Man and I have argued this point for some time, and met with recognition and agreement from the Eldest's allergists, but only blank confusion from his hematologists. Well, then.

Does this change anything? Um, no. It means that specialists somewhere agree with us, that we're not crazy worried parents. Except, of course, that we are - especially after the Toddles' dramatic allergic reaction tonight to... (drumroll, anyone?) tomato.

Fuck this, we're done. (How many times can I say that? What am I up to, three? four? seven?) Next Yom Kippur I want a word with the Big Guy, and it is going to be pithy. We are now up to four new allergies this month: soy, black bean, egg and tomato, with chicken and avocado hovering as Under Suspicion. To say that I'm feeling desperate and scared is to underrate the concept of desperate and scared. But then again, I just came from San Diego, so I have a pretty good idea of what desperate and scared looks like when it's done by pros.

And if I feel like this, imagine my poor Eldest-child.
Huh. My first tag, first meme. Luckily, it's a pretty simple one.

"The Rules:
each player lists 8 facts about themselves
the rules of the game appear before the facts do
the player ends by tagging 8 people, which means listing their names and then going to their blogs to tell them that they’ve been tagged, then going back and commenting on their lists."

The Facts
1. I don't reliably connect faces and names. Even with people I know, I can recognize face/voice and still blank. It's amazingly embarrassing.

2. I used to hold the New York state record for 8 and under backstroke, 25 meters. Dunno why - I've always hated backstroke - we control freaks like to know where we're going.

3. I can get lost on a grid. Reliably. Which you'd think would be helpful, but it isn't.

4. Sitting in its box, my wedding dress looks like it belongs on a Barbie. Which is really funny, since I definitely do not.

5. My personal haven is the messiest room in the house - and I'm a neat freak.

6. I own only one lipstick, and I don't know where it is. But I know where it should be.

7. My first boyfriend told me I was 'cute, but would never be beautiful.' I decided he was eye-candy but would never be smart, and dumped him.

8. I poke needles into my kid daily, but faint when someone draws blood from me.

And I'm tagging Mother in Israel, Rabot Machshavot, The Virtual Tourist, the Precision Blogger, By the Bay, author of a matza recipe that saved my butt this past Pesach (okay, so it was unrecognizeable by the time I was done with it, but still it tasted good), magid, Dakota (the lady who made me my first wrap - congrats to you, mama!), and my alter-ego. At least, as soon as LiveJournal starts working again.

just because I can't let this post turn into a drama queen, here's this:

Mama's Cranky Carrots (I leave it to you to decide who is cranky, the mama or the carrots?)
4-6 servings

1 bunch carrots, chopped very very roughly
1.5 inches fresh ginger, sliced thinly
4 cloves garlic, peeled and lightly smashed with the flat of a knife
2 Tb oil
1/4 cup maple syrup
2/3rd cup pineapple juice, more as needed

Toss the oil into a pot, and turn on the flame. While it's heating up, add ginger. Let the ginger saute for 2 minutes or so before adding garlic. When garlic starts to brown, add everything else. Stir.

Cover with a lid, and lower heat to medium. Let steam for 5 minutes, then uncover and let the liquid reduce until it's almost gone, forming a glaze. Take the pot off the stove and serve.

Note: pineapple juice smells very strong when it's boiling down. Do not fear - by the time you are done, both ginger and pineapple will have mellowed nicely.


dykewife said...

i wasn't sure you'd do the meme or when you'd next be online. damn those allergies!

Anonymous said...

Interesting info on the inhibitors...I kinda thought they had something to do with allergies...those silly hemo docs...it makes sense!

Sorry to hear about tomato allergy for toddles. I know that HAS to be frustrating.

magid said...

OK, what the blankety-blank with all those new reaction-causing foods?! I wish shaking a fist (or anything else I could do) could materially change the situation. (Anything useful I can do to help you cope?)

What is a survival study?

The link between Eldest's probably still extant (in whatever low levels) inhibitors and allergies makes sense. I wish there were some kind of explanation for Toddles... Not that it would make menu-planning any easier, though.

Sounds like San Diego was well worth it. Yay! (And hey, between the two of us, we've made it to a lot of California this month :-)

magid said...

Just the facts

I tend to avoid making meme posts, so I'll put my 8 in a comment here instead:

1. I've never learned to whistle, to my great sadness.

2. In the U.S., I've never lived outside a 30-mile radius of where I was born.

3. I will usually only own one copy of a title, but I have at least half a dozen different editions of Alice in Wonderland (and a bunch of other Alice-themed books).

4. I have a hard time remembering people's names and recognizing people's voices on the phone, unless we've talked dozens of times.

5. I won a prize in college for Ottoman studies.

6. I've been deported from an African country.

7. I was on a winning spelling bee team for my current employer (winning word: orrery... which I'd brought as a random practice word to a team practice the week before).

8. I still have a stuffed turtle (with multi-color dots on the 'shell') that I was given when I was born.

Exblick said...

Glad your trip went well! Did you meet any Hemo B inihib families?

Jill said...

BTW, Exblick = me

mama o' the matrices said...

Hey, jill - who else could exblick possibly be? And yes, we did meet a couple of heme b families. They'd ask questions and the docs would launch into answers, pause and then say things like 'but of course where hemophilia b inhibitors are concerned, we know very little.' Personally, I thought the heme b folks showed admirable restraint.

magid, I like #7 best. And a survival study is when you look at how the drug survives/lasts in the person's body. We've called it kinetics in the past, but you might remember it as the day-long affair for hemo testing that makes me grumpy, afterwards.

And yeah, lois, it does make sense, doesn't it? Silly inside-the-box hematologists.