Monday, September 23, 2013
The odds seem even, well, odder lately. For example, there's this recent study that seems to promote the idea that kids who strictly avoid are more likely to see resolution of their allergy. What does that even mean, strictly avoid? My son ate next to no processed foods, so I would imagine we were in the "strict avoidance" group. When he was RAST tested as part of the clinical trial, his score was so low he barely qualified. Yet he still reacted to peanut - and now his RAST has climbed back up.
Are peanut challenges as part of these trials a bad idea? If that's the case, though, how does that square with oral immunotherapy and SLIT? What about the kids who are going through the challenges and tolerating peanut? How do doctors ever know when to flip that magical switch from avoid to introduce?
Here's another study of people who outgrew, this time for tree nuts. Some of the kids had experienced severe past reactions, yet they still passed.
Then there was that weird SLIT study earlier in the year, where two of the kids in the placebo group spontaneously saw their peanut allergy resolve. I remember laughing when I got to that section of the write-up. You could tell that the researchers were a little miffed at having to explain the anomaly (and the explanation was basically "hey, we don't know, some kids just outgrow").
Those of us who have kicked theories around for years have hypothesized that there are different types of allergies: some that will be outgrown pretty much no matter what parents or kids do, and those that won't.
But what if there's something altogether different going on here?
This study showed an almost 20% increase in food allergies among fall/winter babies. This one showed an increase of 53%! One hypothesis for this is that when very young babies are exposed to heavy pollen loads, their immune system is more likely to learn to overreact. It's also become pretty clear that Vitamin D is somehow playing a role in this.
Honestly, though, I don't care about any of that. I just want to know how to get my kid to pass food challenges. I'm sure you do as well. So...here's my theory:
What if passing or failing a food challenge depends on the time of year the food challenge is given?
Think about it. If kids are predisposed to develop food allergies based on their month of birth, then perhaps those same factors are still in play when it comes to the waxing and waning of food allergies.
Our own personal experience does align with this. My son's final clinical trial challenges (the ones where he did well) occurred in October and January; earlier this year, he passed a soy challenge in February. Would he have passed if we had scheduled it in, say, May? Or would his already-overburdened immune system have gone crazy, re-sensitizing him to soy and undoing all our hard work of avoidance?
The uneven results of many of these clinical trials might also be at least partially explained by the periodicity of testing. It would be fascinating to see the results of the last several studies graphed against the months in which challenges occurred.
If your child has passed a food challenge, was it in the winter? If failed, was it in the spring or summer? Leave me a comment!
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Sunday, September 8, 2013
I know this is not news to any of you. After all, the "bitch" is right there in the title.
Still, I'm reminded of the loss every time I look at the web statistics for this blog. The web stats include a list of search terms people use to find my articles. Know what one of my top search phrases is?
"Food allergies are fake."
I also get lots of hits from "food allergies overblown", "food allergies exaggerated", "crazy food allergy moms", "nutty food allergy parent" - you get the idea. Any time I look at my web statistics, I get a little reminder of how much hate is floating around out there for kids with this particular medical condition.
If you follow them down the rabbit-hole and challenge them on their hatred, eventually you get some version of "geez, can't you take a joke?" Well, no. Unfortunately, I've forgotten how. Explain to me again how funny it is that my son has to grapple with the logistics and fear that comes from a food allergy...and then, on top of it, has to pretend that the bullying doesn't matter to him.
Because that's the reality: unless he goes through life eating only food he himself prepares, he will need to trust people. When half the population doesn't believe in food allergies (to the point that people are taking the time to search for phrases like "I HATE FOOD ALLERGY KIDS"), how well-placed is that trust?
There was a great article in Slate a while back about the dangers of loneliness. A phrase jumped out at me:
In terms of human interactions...the key is in the quality, not the quantity of those people. We just need several on whom we can depend and who depend on us in return.With food allergies, it's all about quantity. It's about every person who touches my son's food, or schedules an event involving food, or who makes a choice to support him (or not). It takes all of them — even the ones who are actively spending their time searching for others who hate food allergy kids as much as they do.
A little further down in the Slate article, I saw this:
When we are lonely, we lose impulse control and engage in what scientists call “social evasion.” We become less concerned with interactions and more concerned with self-preservation. Evolutionary psychologists speculate that loneliness triggers our basic, fight vs. flight survival mechanisms, and we stick to the periphery, away from people we do not know if we can trust.
Ouch. The food allergy periphery. Choosing never to eat out. Choosing to avoid social events that involve food. Choosing not to share information about a food allergy with others because of the fear of ridicule.
I see the haters. Even when I don't look for them in my blog stats, they're there, in my peripheral vision. Where is the magical line between safety and loneliness?
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Saturday, September 7, 2013
This is the Mylan slogan from their web site. I'm here to tell you that you should take them at their word. It's personal, all right.
We received a letter yesterday, ostensibly from Walgreens, as part of their "Walgreens Patient Support Program." The outside of the letter reads: PERSONAL AND CONFIDENTIAL TO BE OPENED BY ADDRESSEE ONLY. Address line is "Parent/Guardian of Sonof FAB."
I was concerned. Drug recall, perhaps? I open it, only to find:
You have received this letter because our records show you filled a prescription for EpiPen® (epinephrine) Auto-Injector 0.3 mg for your child and it may be near or past its expiration date. We would like to remind you that the more important step in reducing the risk of having a potentially life-threatening allergic reaction (anaphylaxis) is to avoid the things that they are allergic to. However, if your child experiences anaphylaxis, you or your child will need to act quickly by using an EpiPen Auto-Injector and seeking immediate medical attention.COME ON! Really? First off, my child is EIGHTEEN so this is a breach of HIS confidentiality. His doctor no longer talks to us about his health - why in the world do Walgreens/Mylan have that right? Second, it is SO CREEPY to use our prescription history for marketing!
|At the corner of creepy and coniving|
There have been a few lawsuits in the last couple of years about this issue. However, plaintiffs have lost because they've been unable to demonstrate harm, or prove that they should benefit from the economic value of their own data.
I have no solution, but I do have to say that any lingering good will I had toward the EpiPen brand has evaporated. We do need to fill prescriptions, but I can certainly avoid Walgreens and at least spread my prescription purchases among multiple pharmacies to avoid leaving a comprehensive data trail.
But the reality is that big data is here, and there's very little we can do about it, other than bitch about it on-line. And chuckle a little bitterly, I suppose, at the irony of Mylan's new tagline:
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