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Monday, February 01, 2010

Things I Have Recently Learned

I have recently learned that teachers who can tell the difference between a picky eater saying a food tastes weird because he's picky and a picky eater saying a food tastes weird because he's suddenly and totally unexpectedly developed an allergy to it and is about to go into anaphylaxis are worth their weight in gold. Especially when that teacher tells you later that she is so sorry this reaction happened under her watch. (Sorry? For jumping in and making my kid toss out the Cookie of Death when lesser classroom heroes may have told him to shut up and eat? Seriously, that action earned you possible naming rights to my next kid.)

I have recently learned that yes, despite his eventual total recovery from his allergic reaction after a double dose of Benadryl, my son did in fact show several bright waving red flags indicating anaphylaxis during his allergy attack, and the emergency room doctor who treated him should have given him a child-sized shot of epinephrine immediately instead of a second dose of Benadryl, and in fact took a big fat unnecessary risk by not doing so.

(So, if your small child ever eats something and then immediately complains of an itchy tongue, breaks out in hives, develops facial swelling, flushes red all over, complains of stomach cramps, and then starts coughing without cease, and you take him to the hospital and some stonefaced overtired ER doctor who seems irked at having to even speak to you tells you to just give your kid a little more Children's Benadryl, PUNCH HIM IN THE FACE STICK HIM WITH HIS OWN NEEDLES make sure you politely insist that the doctor give your child an age-appropriate dose of epinephrine.)

I have recently learned that if your primary care doctor's office staff, who are normally quite competent, call the wrong phone number to tell you the results of a key blood test indicating the possible severity of your son's brand new peanut allergy, even though you had called the office just one hour prior to confirm with the staff which number they could reach you at to give you the results, and then they leave a useless message on your answering machine saying that the results have come in without actually telling you what those results are, even though you've officially authorized the doctor's office to leave a message with the actual test results if you don't answer the phone, and then they close their office phones ten minutes early on a Friday, so that even when you miraculously manage to arrive home and hear the useless misdirected message just in time to call the doctor's office staff back according to their publicly stated phone hours, you still can't get a hold of anyone to give you the damn blood test results, and you realize you won't be able reach anyone at the doctor's office at all until Monday, and so you track down the number of the blood lab that did the test to call the lab yourself, by God — when that happens, some really nice guy at the blood lab named Pete, when he hears you trying not to cry with frustration as you relate this story to him on the phone, will totally bend protocol and fax you a fast-tracked application form so you can get the test results faxed straight to your house from the lab. (Thank you, Nice Blood Test Lab Guy Named Pete.)

I have recently learned that all those parents of kids with serious food allergies were totally right when they told me about so many people, smart people, good people, even medically trained people, not taking food allergies at all as seriously as they take other serious, potentially life-threatening health problems.

That it's really difficult even for me to wrap my mind around the idea that my child could theoretically now be as seriously endangered by a large bag of peanuts as a loaded unlocked gun, because that idea just feels so patently absurd.

That many people will ask you what medical steps you are taking to deal with a brand new food allergy, and many people will try to help you find information about food allergies, and many people will tell you all about how happy hearing about your experience makes them that their kids don't have food allergies, and many people will remind you how lucky you are because "it could be worse!"

But only a few very kind and thoughtful people will think to ask you how you feel about having just a few days ago watched your child narrowly escape death by cookie. By a #&@!& @!*&%!!! cookie!

I have recently learned that I feel pretty awful about that whole experience of holding my kid's hand in a speeding car and feeling totally helpless while he flushed redder and redder and his lips swelled and he coughed uncontrollably and I tried to stay totally calm and comfort him by talking to him about innocuous things in a cheerful voice all while wondering whether he might stop breathing at any moment, and what I would do if he did, all because he had taken two bites of a cookie.

That if I think too hard about it now, I can relive it in excruciating detail. That the whole watching your child have a bad allergic reaction thing is wretched, actually. That it sucks. That I really don't recommend panicked trips to the hospital as a regular family excursion.

I have recently learned that those really thoughtful people I mentioned, those people who take the time to ask a parent who has just experienced her child having a serious allergic reaction how she feels about what just happened, can make that parent feel a whole lot better.

I have learned that I am lucky, that it could have been worse.

I have learned that my five-year-old does not cry when I tell him he can't eat the fries at his favorite restaurant, or when I say he can't always have the same treats other children are having school. That when he sees other children eating what he no longer can. right in front of him, he does not scowl at them or mutter about how life isn't fair.

That he did not throw a fit when I took the bag of candy his grandmother sent him, and gave it away to the kids next door.

That instead of getting angry or upset about the long, long list of restrictions he now suddenly faces due to his allergy, he will instead (usually) tell me that chips are just as nice as fries, that he doesn't mind asking his teacher first before trying a cookie, that we can always buy more candy, that EpiPens aren't quite as scary as vaccine shots, that he doesn't want me to worry about him.

I have recently learned that my son is braver than I am.

That stylish, durable, comfortable, affordable, boyish medical alert bracelets for brave little boys that are not made of mystery metal or mystery plastic or some cheap nickel alloy are nearly impossible to find locally in St. Louis, but are available on the internet.

That your friend with a daughter with diabetes will not only answer your middle-of-the-night emails about where to find nice kids' medical bracelets, but ask her Twitter friends to help you out.

That I find having to wait several days for my kid's medical ID bracelet to arrive in the mail really, really, really annoying. Like, annoying enough to consider buying myself an engraving machine and making my own.

That my son's favorite kind of candy, that he wanted to give out on Valentine's Day, plain M&Ms, are now totally forbidden to him, because Mars does not segregate its production lines and Peanut M&Ms sometimes slip into the plain M&M package.

That I can order nut-free candy-coated chocolate pieces that theoretically also melt in your mouth and not in your hand on the internet. At double the price of the regular kind. Plus shipping.

That I am willing to pay double the price of the regular kind plus shipping. Not just for my kid, but, if necessary, for his whole elementary school class. Just so he can feel normal on Valentine's Day.

That Chipotle and Cici's Pizza and Burger King are peanut-free restaurants. That Chick-fil-A and Chili's are not.

That I am channeling so much ridiculous energy into things like getting my kid a decent ID bracelet and finding some nut-safe candy before Valentine's Day and making spreadsheets of restaurant nutrition information because those are problems I can fix. I can fix those things. I need to do things I can fix right now.

Because I can't fix him.

I can't fix the peanut allergy.

Not right now.

Maybe not ever.


***

Bonus Thing I Have Recently Learned:

That, according to the long-awaited results of his allergy blood test, my son, who has been begging me for a pet cat almost every day since the day he spoke his second word (which was "Kit-tee-cat!" which later changed, adorably, to the inventive Spanglish hybrid,"Gato-ki!" a joyous cry I heard sung out daily, for years, to real cats toy cats and pictures of cats and shadows that sorta looked like cats, with more enthusiasm than "Mama," until he was somehow suddenly old enough to hand me written explanations of Why We Should Have Cats instead) is apparently not only suddenly allergic to peanuts but also suddenly allergic to cats.

Nice one, universe. Nice.

*sigh*

19 comments:

Kathy G said...

Sorry to hear about your son's problems. Life isn't fair, is it?

I suspect you'll have to go through all the stages of grief before you'll be able to come to an acceptance.

Farrell said...

***VIRTUAL HUG****

todd R Jordan - @tojosan said...

Allergies are scary. My wife, a school cook now, and previously a school bus driver, became hyper aware of them.

And no, it's not insane for you to realize how little people take it seriously. Peanuts isn't like being allergic to elephants. You can reasonably avoid an elephant, where as peanuts, heck, no telling where the oil is hiding. We use peanut oil to cook with in our own house.

Your post opened my eyes to how insensitive I was even today when I said I understood the urgency, I totally missed worrying about you. I forget that you are just as human as the rest of us. You are one of the toughest folks on the outside that I've met here in St. Louis.

Anytime you want to do something to raise awareness, give a shout. I love what some folks are doing, 25 words gatherings. The goal being to write a 25 word sentence that captures something about the topic, it could be accessibility, it could be poverty, or in this case, severe allergies. It's easy to do, just spell it out in a blog post and have folks share their 25 words in the comments or on their own blog.

I'm sending along hugs for you both. Peanut oil free, one each.

Jaelithe said...

Oh, Todd, I didn't think you were being insensitive. I thought you were being really helpful today on Twitter.

I didn't really think anyone was being insensitive (well, except that ER doctor). It's just that I did really appreciate that a couple of people realized that I might still be more than a bit unsettled by this whole experience and took the time to ask me. And I appreciated that.

sugaredharpy said...

Shit. And shit.

Your boy is awesome, though :)

birrie said...

I know that this is brand-new, but are there some everyday food ingredients that one should be wary of? I mean, I understand the "this was processed in a plant that also processes tree nuts, etc." label, and I understand that peanut oil is often used for deep frying, but anything sneaky to watch out for? I frequently prepare meals for quite a crowd, and although this rarely comes up, maybe I would to well to be more in the know.

Celeste said...

That is really awful about the twin allergy situation. My understanding about cats is that some (Bengals?) are less allergenic and that there are shots to take that can make a big difference, or that sometimes it's mild enough to live with. However maybe it can't work out at all or it's not worth the stress to try.

We just found out my daughter has a coconut allergy, over the holidays. She gets swollen lips and an itchy tongue. So now it's all about label reading because annoyingly, the "palm oil" that is in packaged cookies (I'm looking at YOU, Pepperidge Farm) is from coconuts. Two bites into one of those at Grandma's and it was run for the Benadryl. Luckily most homemade cookies won't have coconut product in them, so we are teaching her to stick to packaged cookies we know of and (FOR ONCE as a picky eater) not try new things. Coconut is in a lot of candies, too, so we are making a list of allowed vs. not allowed.

I've decided I'm lucky because my child is schoolage and can clearly tell me what is going on when this happens. I think it's got to be a lot scarier with a small child. I have no confidence that this will be something she can outgrow, but I can take a little comfort in it being a rarer substance. I just don't know what to expect about it worsening or maybe encompassing other nuts. I haven't found much online about but will be talking to our doctor about it soon.

I thank you so much for the heads up about nut-free restaurants.

Jaelithe said...

Oh, Celeste, that's awful news about the coconut allergy. I know palm oil is in practically every manufactured cookie or cake now because manufacturers have started using it in place of partially hydrogenated soybean oil to reduce the trans fat in their products.

Isaac's new allergist was actually quite specific in saying he did not think Isaac was likely to develop an allergy to other nuts, because of his test results (he shows no antibodies to any other kind of nut, and he did not react to other nuts during the skin test). But this one came on so suddenly I'm still wary.

My sister actually has a Bengal cat (that she found as a diseased and hungry stray, oddly enough, without a chip or even a collar) and my son just spent hours playing with that cat a few weeks ago and did not complain of any allergy symptoms. So I'm hoping he really doesn't have trouble with Bengals. But Bengals are really expensive if you don't happen to find one wandering in the yard of a house you are renovating.

The reason we don't already have a cat is that my husband is highly allergic to cats. In fact my husband is allergic to anything with fur. Sigh.

Celeste said...

Again, thanks for the heads up on the trans fat changes to cookies! So far the only packaged ones she likes are Oreos. I hope, hope, hope they won't change their formula so we won't have to take those from her. But of course if we have to, then we will.

That's good news that your son can handle a Bengal cat and do okay; maybe he can't have one now because of your husband, but when he's older and lives somewhere else it could be an option in his life. I do know that lots of breeders let animals they are done breeding go for a lot lower price than they do the young ones. Food for thought if you ever wanted to ask around. Sometimes a breeder may get a rescue animal, too, for a reason like an owner going into a nursing home or moving. But for now I'll just be glad your son has access to a cat that doesn't bother him (if in fact your relative keeps the cat).

What a great blog; I'm glad to have found it!

Anonymous said...

Would just like to say I understand. ((((((HUGS)))))))) Our daughter who is turning 4 today is severly allergic to peanuts. The first time injested she was only about 2 years old. We called 911 and the ambulance came. Her breathing is affected immediately even with a small trace of a peanut. She has recently been accepted at Duke in their peanut studies. You might want to look into that and see if there is a study near you. They have a great success story! I know it is hard, just be sure and read every label. Never try Duncan Hines cake mixes (there have been peanut reactions to them even when peanuts were NOT on the label even as a caution). Ask your Dr about ChickFilA, it is highly refined peanut oil and honestly our daughter can eat there. Her RAST is over 100 to peanuts too! Again, (((((HUGS))))) been there done that. Dealt with people who do not take it seriously (even my husband for a while!!!)

Anonymous said...

It is amazing what you learn after your dear child is diagnosed with a peanut allergy. My daughter was diagnosed a year ago this month when she was 2 years old. She also had a terrible reaction to a peanut butter filled pretzel - swelling and vomiting. We took her to the ER and you know what? They NEVER mentioned the word allergy - even after I told them she had peanut butter. We did not give it to her very often, once or twice in a sandwich that she licked and threw down on her plate (amazing that they KNOW what they cannot eat). They gave her Benadryl and sent us on our way. After having 2 other kids and no allergies, I didn't know any better. Until a month later when she had a few nuts and her little body completely swelled up and again was violently vomiting. I called the pediatrician on call and they said to give her Benedryl and watch her through the night! Through the night!!! She could have died - I know now but didn't know then. Luckily, we DID get through the night and got to an allergist the next week to find that she has a grade 6 allergy - IgE over 100. What I would like to know is HOW a medical professional - nurse or doctor or EMT - could not know an allergic reaction when they see one?

Things will get easier to deal with. I was a crying freak about it for a month and now it has become a part of life for us. I am so sorry for you and your son and for all of the other mothers out there that have this fear on a daily basis. It sucks but we all just need to raise awareness so our children can stay out of dangerous situations. Thanks for your blog!!!

Cheryl said...

Just wanted to let you know, as you probably already do, that you are NOT ALONE! My son was diagnosed with peanut allergy at 10 months. I read every label of everything that went into his mouth since then, interrogated anyone who gave him anything, and yet it was ME who accidentally gave him a peanut butter cookie right before he turned 2 and sent him to the hospital.
He's now 6 and in kindergarten. Get used to being your son's best advocate. It sounds like he has a fab teacher. You're lucky! We love S's kindergarten teacher but someone still gave him M&Ms during a class party. We still get moms who say, "Well can't he just have a cracker or something?" when I say he can't have the birthday cake. It's maddening.
But then there are the other friends, who change the menu of their daughter's bat mitzvah b/c she didn't want chicken satay coming in contact with my son. The neighbors who have special treats just for him at Halloween. The parents who call to make sure of what he can eat at playdates.
It's a scary, scary thing. You will be completely infuriated as to why we need peanuts in school - b/c I also equate them to a loaded gun.
And he, like my son, may appear fine when they can't have what everyone else is having, but know that inside, they might be feeling left out. Because people WILL say "Oh, he had a pretzel while everyone else had hot fudge sundaes, but he was FINE with it." To which I say, HE'S SIX. How would you feel if it were YOUR child?
We focus on what he CAN have. Which is a lot. It just becomes a way of life. You learn who "gets it" and those people you will hold dear. As I have said many times, it takes a village. It takes a village.
I could go on - but I'm sure I've gone on long enough! So take care of that precious boy of yours!

Sakina Bajowala. M.D. said...

Beautifully written. Reflects the experience of so many parents, and also the frustrations that we (parents and allergists) encounter on a day to day basis when navigating a world in which simple pleasures can be our greatest enemy. Thanks for sharing!

Yvonne said...

Hats off for telling it like it is. I am a mom who isn't new to food allergies, but they are really scary. I grew up with a dad who was hightly allergic to eggs, married a wonderful man allergic to chicken (yes, chicken) and nuts. We have 2 kids both of whom are allergic to nuts and milk. When our 5 year old was born we gave her formula at the hospital, which she wanted nothing to do with and kept spitting up. After 24 hours they switched her to soy, and the spit-up was solved. When she was 2 I asked her pediatrian about allergy testing and was told she was too young and if I was worried about a peanut reaction I should sit in the ER parking lot and feed it to her. If I could go back in time I think I should have punched him in the face! At 3 we did have her tested b/c we found on our own an allergist who does test children. It turns out she was highly allergic to both nuts and milk. When my son was born we tried again with regular formula which he wouldn't take for me. His nurse tried to force it on him and he puked on her. (I had told her he needed to switch to soy, but she wouldn't listen). When he was was almost 4 months old he started to develop some skin issues so we did have him skin tested, but nothing showed up (they think b/c he was so young and was having the other skin issues) When he was 9 months old I gave him yougurt which I thought would be a great snack for him - HAAA! We spent Mother's Day in the ER. IVs were used to give him bennadryl and fluids. After that we went with blood tests and it turns out his numbers are higher than his sister's. My daughter is in Kindergarten this year and I have made an epi-pen bag for her to carry with her at all times. My son's is in his diaper bag, but as soon as we get out of the diapers he'll be getting his own epi-pen bag. As a teacher I really try to watch foods that are in snacks in our room b/c we do have kids with allergies. All but one parent is very good about not sending any foods containing peanuts to school. Our lunchroom has a peanut free table, but I know neither one of my kids will eat lunch at the school cafeteria. Kids with milk allergies only get water from the fountain to drink and are given a hard time about not having enough items on their plates (not by me, but the cafe manager).

As for other parents of kids without allergies, they just don't get it and I don't think some ever will. They don't understand how serious it is and some just don't care b/c it isn't their kid. They also don't understand how difficult grocery shopping can be.

If you need some treat ideas feel free to email me.

Good luck. You aren't alone.

Jamie Stern said...

Jaelithe, Thank you for this post. I follow several blogs to learn more about the everyday nightmares that many food allergic families face. I am sure your readers will gain support from knowing they are not alone...and can learn from each other's experiences. Thanks.

Korinthia Klein said...

My daughter has nut allergies, so I can relate. Here in Milwaukee there is a parent support group for sharing resources about allergies, and one of the most interesting things I heard was that Disney World of all places was excellent about food allergies. I had never really wanted to go to Disney, but they apparently go above and beyond to accommodate people with any combination of food allergies you can imagine and make people feel at ease. (Just thought I'd pass that along. Good luck, and try not to be scared.)

_Susan_ said...

Wow! I remember feleing this way! When dd was diagnosied with a milk and egg allergy at 15 months old my big worry was abduction. Not that we wouldn't find her...that the abductor would give her a bottle of milk!

I remember being asked by ER staff "was this an anaphylaxis reaction?" Hah! Trick question-did I wait until the reaction progressed to the point the the veins might colapse and make the Epi-shot useless? No! She had sufficient symptoms that, given her history and her increased risk (asthma) that we utilized the Epipen as prescribed by her allergist.

I too marvel at how mature our children can be,. How patient they are as they wait until later for their treat. How understanding that they can't can't go to camp because the camp can't/won't keep them safe.

Other times dd seems so childish-even baby like. She loves to be cuddled, she even makes silly baby sounds at times. I think part of her wants to stay small and be protected.

But now she has a cat-who also has food allergies! She looks after him.

Do you know how hard it is to find a cat food with none of her allergens: egg, milk, peanuts, tree nuts, legumes (soy is OK) and that also contains no beef, pork or lamb (cat's allergens)?

Sometimes I get the feeling that life is mocking me :P

Anonymous said...

hi
I am the proud mother of two allergic boys! One is allergic to milk and eggs and the little one is milk, eggs wheat,peanuts amongst other things. I understand all your frustrations, trust me. I worry every day but I try to look on the bright side and know there is so much more out there that is worse than FOOD ALLERGIES and pray each day there will be a cure. What keeps me going is staying aware trying to educate the people around me, always looking for new snacks and trying to protect and educate my kids to the best of my ability.
I keep saying....this too shall pass (hopefully)
lilplato

Anonymous said...

hi
I am the proud mother of two allergic boys! One is allergic to milk and eggs and the little one is milk, eggs wheat,peanuts amongst other things. I understand all your frustrations, trust me. I worry every day but I try to look on the bright side and know there is so much more out there that is worse than FOOD ALLERGIES and pray each day there will be a cure. What keeps me going is staying aware trying to educate the people around me, always looking for new snacks and trying to protect and educate my kids to the best of my ability.
I keep saying....this too shall pass (hopefully)
lilplato