Friday, October 19, 2007

Welcome To My Life

Okay, I will try to stick a YouTube video in this post and I hope it works.






Every single one of these children is my child. This is his life. These are the words that he says. Notice, too, nearly every child says "peanuts." Most likely to kill, peanuts.

Via HipWriterMama who also writes: "I often think if she [her daughter] had been diagnosed with a medical condition that sounded more impressive, it would be easier for people to feel compassion."

I am perpetually dismayed by the vitriol spouted by people who seem to think this is a made up condition or somehow funny.

11 comments:

Monica said...

How sad. Those kids are so adorably intelligent.

You know what's interesting? Up until a few years ago I'd never heard of such widespread food allergies. Now I'm hearing about it ALL THE TIME. One of my friends, who is my age (33) developed a serious allergy to tree nuts just a few years ago. ?? Obviously you know a lot more about this than I do, so I'd love some feedback. Was this something people were experiencing all along but it just a) wasn't broadcast extensively, b)wasn't recognized as an allergy to something specific, or c) this one is something I'm particularly interested in - do you think that there's something in our modern environment that's causing these allergies? I'm just hearing of so many people now that have food allergies, especially to nuts. It's even becoming more common in animals. My last dog couldn't eat anything but fish and potato. Figuring out what to feed him for 7 years was horrific. He developed allergies to practically every known food. I've also heard of terrible and widespread children's allergies (they can eat like 4 foods), although they usually grow out of some of it.

I've been told with dogs it's inbreeding - something which obviously doesn't apply to humans! But the widespread nature of this makes me think it's got to be more than genetics.

This last possibility I mentioned (exposure or lack of exposure to something) doesn't seem incredibly far-fetched to me because of the hygiene hypothesis with regard to asthma. However, there was that one little girl who mentioned an allergic reaction from breast milk. !? I take it was something in the breast milk?

HipWriterMama said...

Jenn,
Thanks for the shout out. Food allergies definitely creates a whole new hyperawareness, doesn't it? Wishing you and your son the best.

Also, Monica...I just read your question about the girl who mentioned the allergic reaction to breast milk. What she was allergic to was the food her mother ingested that cross-contaminated her breast milk.

Sounds crazy, doesn't it? In fact, every once in awhile, in Massachusetts at least, you may see news warnings for pregnant and nursing mothers to avoid eating peanut related products because of the increased chance of carrying over a peanut allergy to their child.

I can also say with authority that dairy, egg and shellfish allergies may also carry over through breast milk.

Rational Jenn said...

Hey Monica!

It IS crazy. Really, sometimes when I can step out of our situation, it seems so bizarre that a food can kill you.

Scientists and medical researchers (of which I am neither) have not figured out the allergy triggers yet. From the research I've done, ALL allergies are on the rise, not just the food ones. I haven't seen anything specific to anaphylaxis yet, but it wouldn't surprise me to learn that anaphylaxis cases are on the rise. I do know that immune-system-related illnesses are on the rise (type 1 diabetes--my husband got this at 30, thyroid, etc.).

It's interesting to me because I'd like them to find a cure and I'd love to prevent anaphylactic allergies in my 2 year old. I think it's a combination of factors. I keep reading about the "hygiene hypothesis" which many people unfortunately interpret narrowly as "too much hand sanitizer in the home" and accuse people like me as having too clean a house and that's why my son has PA. (Laughable, given the state of my house at any given moment!)

That may be part of it, but I suspect the hygiene hypothesis is broader in terms of the environmental factors and time also. For example, I've often wondered if immunizations play a role, and it was in the 60s and 70s that children (like me!) were given multiple shots for multiple diseases and often all at once. Could that have damaged or changed my immune system (and other kids the same age) and now we have all grown up and started having kids ourselves? And there is something to the whole idea that humans have a biological need to be exposed to certain levels of germs to get the immune system working right.

Also, there's the hereditary factor. I had eczema as a child. I myself am anaphylactic to penicillin and sulfa drugs and have been since I was a child. I used to be really allergic to mosquito bites, which I outgrew. Just this past summer I completed a 5 year program of allergy shots for my environmental allergies. It seems logical that a kid of mine might be allergic to something. Ryan had bad eczema since the minute we brought him home--after he had a NICU stay where he was pumped full of antibiotics after birth. Could that have done it? I don't know.

When I was nursing him, I ate peanuts and nuts and never associated it with his eczema. It wasn't until after his episode that I realized how much eczema he had been suffering from--there was peanut oil in our fabric softener, and he used to get rings of eczema around his legs just about the ankles--right where the tops of his socks hit. Crazy.

I also suspect some of the rise in allergies can be attributed to the fact that many people with anaphylaxis did not survive an attack--we now have Epipens, a very recent development. Or deaths that were cause by anaphylaxis were documented as a different cause, because some of the anaphylactic symptoms--hives, etc--will disappear after death. So it just wasn't recognized, plus people didn't survive as often, to go on and produce offspring. Maybe? I'm just throwing this out--no citations, just my wandering thoughts. I'm sure that you, as a biologist, know way more about such things.

Your poor doggy--I'm glad you were able to find something to feed him. I'm glad that we are able to manage the peanut thing, too. As discouraging as it can be, it is reassuring to me that we have a great deal of control over this condition. As long as we make good choices for him, his risk will be small. And of course we are teaching him to manage his risk--that's the part I really worry about. Because ultimately this is his problem and he will be responsible for it one day. There will always be a risk unless I grow all of our own food (doubtful!), but it's a risk that we can handle.

Whew! Tome! Bye!

Monica said...

"From the research I've done, ALL allergies are on the rise, not just the food ones. I haven't seen anything specific to anaphylaxis yet, but it wouldn't surprise me to learn that anaphylaxis cases are on the rise. I do know that immune-system-related illnesses are on the rise (type 1 diabetes--my husband got this at 30, thyroid, etc.)."

Huh. Yup. That's what I surmised. I do some medical writing to earn money, and did a course on pediatric atopic dermatitis (eczema). The quality of life scores for kids with that disease were LOWER than kids with cerebral palsy. That's when I learned that being allergic to stuff was terribly debilitating.

So it's partly genetic (perhaps mostly) and environmental, it seems. That makes sense. Our brains have evolved far faster than our bodies.

Peanut oil in fabric softener? Who would have guessed. How awful. I imagine you must have to look at labels for practically everything you buy. ugh.

Is your daughter allergic to anything?

Rational Jenn said...

So far, my daughter has no allergies and she is not atopic, which is good for her. But...she lives in a home without peanuts or tree nuts (which Ryan is avoiding as a safety measure). She has not been directly exposed to fish or shellfish yet. She will be 3 next March, and the standard advice will be to have her tested for those allergens when she's between 3 and 5. She does have a pretty elevated food allergy risk due to having a sibling with a food allergy. We will need to decide if we should go the blood test route, which is less accurate but less traumatic, or do the whole skin prick test ordeal which is very, very accurate only way not fun and also it's a direct exposure so there is a real risk if she is allergic. Haven't decided yet.

I meant to mention before that Ryan is very very fortunate to not have asthma. The vast majority of people who die from anaphylactic food reactions are also asthmatic. Sometimes, an anaphylactic reaction is mistaken for an asthma attack and consequently the Epipen is not given early enough. I remember reading that many times a cause of death was recorded as due to asthma, years and decades ago, before anaphylaxis was looked for as a possibility. Asthma is also increasing alarmingly in Western countries.

I know! Fabric softener! There is now a federal law (blurg) requiring food companies to list all of the top 8 allergens. Since fabric softeners and dog biscuits and bird seed and lotions are not meant for human consumption, many companies do not include allergen information on the packaging. It's one of the reasons I'm opposed to federal legislation of this type because it gives companies a nice little reason NOT to provide more information than is required by law. Of course, rational companies who like to earn money from happy paying customers will provide this information--and did so before this legislation was enacted. Now, slacker companies can say "we're following the letter of the law" and may think that since they are protected from lawsuits then not much further effort is necessary.

We do read labels and extensively research every food item we come in contact with. It's a huge pain. But as I said before, it's in our control--when in doubt, we don't eat it. We have been very diligent about managing this risk and it's comforting to me that so much of it can be handled rationally. Same with my husband's diabetes--it sucks, no doubt, but it's very much in HIS control.

Thanks so much for your comments and concern--means a lot.

Monica said...

"Asthma is also increasing alarmingly in Western countries."

One thing I've discovered in my medical writing is that asthma is correlated to obesity, especially in children. This makes sense since asthma is an inflammatory disease. They're now discovering that being obese increases certain inflammatory markers in your body, and that is is correlated with asthma. Of course, obesity in children is also very high in Western countries, so although they haven't made a causal link, I think there is one.

But yeah, you're right. Allergies, atopy, asthma, it often all goes together.

Monica said...

Oh. My. God. I just visited both of those sites you linked.

Those people are not only idiots, they're far worse. They're 1) in denial of reality and 2) just plain cruel. Reading some of those comments, I'd think some of those people are actually dangerous. Of the type in the movie Firewall that tries to feed a peanut allergic kid a peanut cookie.

I left a message on one of the blogs saying that I hoped that all the people who mentioned natural selection would be taken out by natural selection themselves, perhaps by cancer (like food allergies, something no one asks for)? I'm sure it won't be published.

People are idiots. Like the people who think chemical sensitivity is a joke. I mean, who wants to walk around with a gas mask all day long? (I went to school with a girl who had to do this.)

Wow. I expect people to be uninformed, but for them to completely evade reality after someone lists specific instances, or to just be that incredibly hateful and mean.... wow.

Rational Jenn said...

Yep. I've got a whole new perspective on petty meanness since the peanut allergy thing.

Most people are wonderfully understanding and compassionate and helpful and benevolent. Yay.

But some people just plain suck. The first time I encountered the "natural selection" argument wrt food allergies, I just broke down and cried--the diagnosis and almost-dying event was still fairly new, so I got emotional about the whole thing. I still get angry sometimes. When I'm in the mood to respond to the idiots, I try (oh how I try) to take a neutral tone in the interest of educating someone with the ability to be rational.

Of course I could never never send my son to school knowing that there are people like that out there though. We had decided to do the homeschool thing before the peanut incident, but any lingering doubts in my mind were immediately erased upon reading such nastiness. I know many parents choose to send their food-allergic kids to school and most are successful. But the stress of it would be difficult to bear, especially when they are so young and vulnerable.

Did your friend with chemical sensitivities outgrow them? Or is she still suffering from them? That's just got to be miserable. When I think of how much my own life has been negatively affected by my own allergies, I can't imagine what she must have gone through.

Monica said...

Poop. This is my second time trying this. Sometimes I hate blogger.

I don't know what happened to that girl. Long time ago. I remember seeing an ad for a roommate she posted once, though. Basically, she wanted everything used by her roommate to be fragrance free. That's a pretty tough bill to fit. I think everyone has varying levels of sensitivity to synthetic chemicals. I get physically sick when someone uses too much perfume. In fact, I can't even wear perfume myself, which drives me crazy, because I'd like to wear it. I'm not sure if it's because it's synthetic in nature, or if it's just such a high concentration.

As for Ryan, I assume he's allergic only to peanuts? Have you tried almond butter? Would that be safe? Peanut butter just tastes so good. Almond butter doesn't compare in taste, but it is healthier for you.

If it makes you feel any better, there are some pretty potent carcinogens in peanuts. They come from the molds that live around the peanut roots. In fact, it's regulated, and many peanut lots have to be thrown out because hte aflatoxin levels are too high. Aflatoxins are potent carcinogens. In advanced mycology I learned about this whole regulatory scenario with peanuts, and how it's literally stopped science from happening. You see, these scientists wanted to synonymize two mold species, one strain with typically low aflatoxin levels and one with high. They decided not to do it because it probably would have resulted in peanuts being banned. Crazy, eh? There are similar scenarios with people who study and describe species of hallucinogenic mushrooms. If new species are put in a particular genus, they're of course, automatically banned by the government.

Monica said...

Oh, one more thing. all the mold stuff proves is how non-objective and concrete bound government can be. As in "we'll ban this particular species." Never mind that species change all the time. Never mind that there are different levels of these chemicals in different species within a genus. No, we'll just ban the whole genus, regardless of the fact that other non-banned mushrooms have even more hallucinogenic chemicals in them than the banned ones..

DUMB.

Rational Jenn said...

If new species are put in a particular genus, they're of course, automatically banned by the government.

I had no idea. Really, it is just beginning to dawn on me at the ripe old age of 36 that there is a startling amount of government-related stuff about which I have NO IDEA. I am truly alarmed here!

Ryan's allergy is only to peanuts, but we avoid other nuts due to A) most tree nuts are processed in factories that also process peanuts so it poses a danger to him and also B) there is a fairly high rate of people with PA who are also TNA. Now that he's 5, we can give him tree nuts, but we will need to have him tested first and then he will get to eat them in a doctor's office. He was eating almonds just fine the day before his peanut experience.

So, almond butter is out, but we really like sunflower seed butter, especially Sunbutter brand (there's a link on my sidebar). It's been so long since I've tasted real peanut butter, but Sunbutter tastes very much like the real thing to me. You can even use it to bake with although I have not tried it yet. I read somewhere you must be careful using baking soda in any Sunbutter recipe as the combination of the two makes for a green color! It's okay to eat, just weird, I'm told. Maybe St. Patrick's Day.