A day at the geneticist

Cindy posts that her family's been having a hard week. I do admit I've wondered how it goes in larger families; once one child comes home with a flu or something, does that inevitably means it goes around and everyone gets it? Even in our family of four, often just because a kid has a cold doesn't mean that the parents will get it, but it's almost guaranteed that the other kid will pick it up. Voov acquired a viral fever from her cousin at Xmas, and then had some congestion, so we had to have the humidifier on every night. We were going to put the humidifier away, but then Shmoop started getting congested too. And now he most likely has an ear infection. (And a rare, for him, incidence of eczema behind his knees.) The fun never stops!

Voov's eczema has been moderate for a while, so that's why I haven't mentioned it. Some on her scalp though. Whenever she gets stressed about anything, even momentarily, her hands shoot up to her head and she starts scratching away. I have to laugh because I do the same thing, even though I'm all grown up. It's a reflex.

Eczema isn't the only nonstandard feature Voov came equipped with. She's also had a few weird things with her eyes; she took a long time to learn how to walk and talk; and her face looks a little odd--her forehead's kinda bulgy, and her eyes look far apart. Taking everything together, her pediatrician advised us to get a genetic consult to determine whether she might be suffering from some syndrome. So that's what we did today-- went in for the consult.

We saw an MD and a genetic advisor, who asked us all kinds of questions about medical conditions in our families (we had also come with a stack of photos of family members so the docs could compare Voov's face with the photos) and took measurements of length ratios of her fingers to palms; torso to legs; pupil-to-pupil vs. width of the bridge of the nose, etc. At the start, the docs were almost too caring and friendly--it was unnerving, like they were preparing for us to freak out if they found something was wrong. But in the end their initial conclusion was that Voov had no obvious syndrome (although the bridge of her nose is very wide). Which was a huge relief, of course. However, they did suggest that we get done a procedure called "array comparative genomic hybridization," which I'd never heard of, and which consists of comparing stretches of Voov's genome to standardized DNA from "normal" people and looking for deletions and insertions.

Since there's no pressing need to get this done, I'm actually not keen on it. I could imagine that the test might turn up some deletion or insertion that might be associated with a fractionally increased risk for some condition, and then we'd just have something new to worry about. Hidden B wants to get it done, though. She says she wants to know, and that we might find out that (for example) we should get Voov's heart checked out, or at the very least, we'd be contributing her genetic information to a databank that would help other parents.

I can't really argue otherwise-- if there's something definite we could act on, we need to know. The thing is, what's more likely is that there won't be anything definite, or there might be something definite that we can't do anything about. I know that much is true about genetic information.

Ain't he cute?

Not too much to post tonight-- I'll note that the current issue of the Journal of Allergy and Clinical Immunology is dedicated to immunotherapy, and there's an interesting review of what the future may hold, as well as a number of articles about clinical trials of immunotherapy for allergens important to eczema, including timothy grass and cat dander. Can't wait to read the papers! --but haven't had the time.

Check this photo out. Who's this handsome fella? Yours truly, Spanish Key, Christmas 1972. My mom sent it to me recently. For me it's particularly interesting because it's really hard to see any traces of eczema on the exposed skin. There's some healing scabs on my left foot. Maybe the photographer airbrushed the shot!

There's no denying that I've had eczema as long as I can remember, so I'm interested to see a baby photo of me that looks so...normal. 

A Canadian sister of the NEA

Yesterday I was talking about how so many "news" articles about eczema are of the "eczema is..." variety. Here's one such: "Winter brings itchy, scratchy woes to sufferers of eczema," courtesy of www.canada.com. Now, being Canadian (as well as American) and having spent eleven years in Saskatchewan, I can attest that Canadians know winter, and that winter indeed brings on the misery. There are two reasons, I think: once everything freezes, the air becomes very dry and sucks moisture out of your skin; and inside, the air from central heating dries you out too. Try that for five or six months of every year.

The article isn't really news, and the author isn't well-informed ("An allergen-- and there are many, including harsh soaps, perfumed items, fabric softeners, dust mites and certain foods...") but it did contain a nugget that was news to me. It introduced me (and, hence, you) to the Eczema Society of Canada, a nonprofit sister of the National Eczema Association. You have to check out the ESC's website. It's very well done. Their mission is to educate sufferers and to increase public awareness of the disease, and they're clearly doing both.

Another interesting point: the ESC website has a section devoted exclusively to hand eczema. I don't know why this is-- is hand eczema of particular interest to the society's board? I have eczema on my hands, but I also have it virtually everywhere. I guess certain people must subject their hands to stresses while doing their jobs-- maybe they have to wear rubber gloves-- I know a former dentist of mine had trouble with his latex gloves.

In the past few years a specific treatment for hand eczema has been developed by the Swiss company Basilea. The drug is aliretinoin and the trade name is Toctino. A business news item of note, from Bloomberg: apparently the stock of Basilea, which is a midsize company, just took a big jump because an investment research firm decided Basilea was undervalued and ripe for a takeover. Part of Basilea's value stems from $130 million it won in a suit against Johnson & Johnson because J&J mismanaged clinical trials of another Basilea drug. J&J, you may know, owns Aveeno.

Why should we care about these details of the business world? Well, I like to know stuff, and while I generally find business news boring, somehow it's more interesting when it involves companies that make products that I use. Also, if you want to know about emerging eczema treatments, the business section is where you should look. Any treatments that qualify as eczema "cures" are going to have to be made by companies for a profit.

And the companies that innovate the cures will be small ones-- that is how innovation happens in pharma-- and then big pharma, like J&J, is going to buy the small companies. So I like to know what's going on both at the small and big ends of the eczema therapy market.

Cryptic children

So I read all of the backlogged eczema news from the holidays. Quite remarkable: there wasn't anything worth talking about. A trawl of the internet at any given time turns up a host of hits for eczema, 50% of which are "eczema is..." explanations for the lucky people who don't know what eczema is; 45% of which are miracle cures; and 5% of which are Yahoo Answers postings along the lines of "OMG i have exsema on my face so gross what can i do about it." Every few days, you see something interesting. But not over the past two weeks, apparently.

And so today I muse: One of the more difficult things about having a very young child with eczema is that they can't explain what they're feeling. Voov is about 18 months and she's just learning to talk, and a lot of the things she says come out garbled. We think she understands most of what we say-- but her answer to any question is usually "yes." What are we to make of it, then, when she starts writhing and crying when we put CeraVe (unscented moisturizer) on her, and she can't tell us why? We ask "is it cold?" "Yes." "Does it sting?" "Yes." Of course, you get the same answer if you ask if it's warm, or if it smells like roses.

I put the CeraVe on myself, and didn't feel anything. But is her skin the same as mine? It must be much more sensitive. As far as we know, CeraVe is the best thing we could be putting on her, and it doesn't raise any irritation.

Lately, she's been learning how to manipulate us, especially where her brother is concerned. She likes to yell "Shmoop!" in a loud, anguished voice, and enjoys bringing her parents' wrath down like artillery on the competition. Perhaps she likes the attention she gets when she complains about CeraVe. It's hard to tell.

New Year's resolutions? Ditch the coffee and candy

How are you all? Anyone make any New Year's resolutions?

I didn't. Forgot to, actually. New Year's isn't as exciting as it once was. Since we had our first kid, we've been in bed well before midnight every Dec 31.

In past years, I made a number of resolutions. Most of them had to do with eczema. They were along the lines of "won't scratch so much." I was no more successful than people who resolve to lose weight and take out gym memberships. My father-in-law has a great cartoon from the New Yorker-- a bunch of blobs of fat out for a jog (they may have some label like "Your Lost Weight") and one turns to another and says "It's about time to head back."

One thing I do have to do, though, is kick the addiction to sugar and caffeine I reacquired over Christmas. We got a new coffeemaker--Hidden B likes it every day, and I indulge on Sundays normally, but had several cups a day over the last week--and because I ate so many chocolates, I developed a craving that would hit me every afternoon around 3. I know neither sugar nor caffeine are good for eczema. So: away with ye, coffee and candy!

The first work week after the holidays has been busy and we've had a series of minor crises in the house (both kids are sick; car trouble; Hidden B working out bugs on her new Android phone) so I'm not up to the minute on eczema news. Let me get back to you when I am. I'm also hoping in the near future to talk to a philanthropist about fundraising strategy, and to have a conversation with UCSF's Martin Steinhoff about itch centers in Germany.