The Mind of Bluesleepy

A partial reprieve 7 November 2007

Filed under: Uncategorized — bluesleepy @ 7:41 pm

Today we visited the pediatric allergist. I was so surprised when I asked for the referral to find out there is one right here in town. I assumed I’d have to go to Providence at the very least, if not all the way to Boston (hi, Angela!). But instead, it was all of a five or ten minute drive to the doctor’s office.

Hooray for short commutes!

We spoke to a nurse at length about Grace’s allergies. It was sort of hard to do because the initial diagnosis, as well as the testing, had been done a year ago when she first swelled up after a bite of a peanut butter cookie. I couldn’t remember all of the things they’d put into the scratch test, but I did remember they only tested for peanuts and other legumes with the typical allergens such as trees and grasses. They hadn’t done a tree nut allergy test, which annoyed me slightly at the time because some people are allergic to both peanuts and tree nuts, and I would really have liked to have known for sure.

Peanuts aren’t nuts, did you know that? They’re legumes, related to peas and beans and soybeans. Not nuts.

About six months after we had all this initial testing done in for the peanuts, I went out to dinner with my good friend Stephanie, who was my mail carrier at the time, and we had a side salad added to our order of pizza at this brewery in town. This place had delusions of grandeur and always attempted to foo-foo up their food so they could charge more for it. Our side salad wasn’t simply a pile of iceberg lettuce and tomatoes; instead it was mixed field greens with tomatoes and cucumbers and bell peppers. And apparently candied walnuts, though I couldn’t tell that at the time. I am not a fan of nuts, personally, and I will always notice if they’re in my food.

An hour or so after enjoying half of my side salad (because really, how much of your dinner is really yours once you become a mother?), Grace broke out in hives. I immediately called the restaurant to ask Whiskey Tango Foxtrot, people? only to be told that there were indeed candied walnuts on the salad.

I reported this to the allergist the next time we saw him, and he informed us that Grace probably does have a nut allergy, as well as her peanut allergy. When I had a new medical bracelet made after I thought we lost her old one, I had it engraved with “nut AND peanut allergy.”

Our appointment today was simply a follow-up for monitoring purposes. Our old allergist wanted to see Grace every year to make sure she wasn’t getting worse. We had seen him just before we had left Washington, but we met with this new allergist so we would have a relationship with him already in case Grace had a really bad reaction to peanuts.

We spoke with the nurse at great length. She herself is allergic to hazelnuts and almonds, so I felt she really understood where we are coming from. She offered to do a new scratch test — not for peanuts, as we’d had the blood test done and it was definitive that she was allergic to peanuts — but for tree nuts. She loaded up the device with allergens from Brazil nuts and hazelnuts and almonds and filberts and walnuts and coconut (which confused me; coconut is a nut?) and cashews and one other that I can’t recall. She stabbed Grace in the back with this device, as well as two control shots, and we waited fifteen minutes to see what would happen.

I remember when they had done this for Grace’s peanut allergy. The mark they made with the peanut allergen swelled up so that it looked like a really bad mosquito bite. There was no question at all that she was allergic to peanuts.

Today, however, she showed no reaction. Every mark made on her back remained a small little pinprick.

Grace is not allergic to tree nuts.

Now while this is a partial reprieve from my hyper-vigilance as a mother, it’s not a complete one. Peanuts are still a major issue, and they’re so prevalent that I will still have to read labels very carefully. Also I am hesitant to allow her to eat tree nuts as cross-contamination with peanuts isn’t a possibility, it’s a reality. And right now she’s too young to differentiate which nuts are okay for her to eat and which aren’t. Better to simply have all nuts off limits in hopes she doesn’t ingest the wrong ones.

This allergist also had a completely different take on food allergies than the last allergist. Our old allergist had basically told me that the more often Grace had peanuts, the worse her allergy would get until she ended up to be a Class Six (on a scale of 0 to 6, with 0 being not allergic at all to 6 being deathly allergic) in danger of dying from anaphylactic shock should she be exposed to the least quantity of peanuts. According to him, the more reactions Grace had, the worse the reactions would get.

This new allergist told us that there is no proof that that would happen. It is possible that Grace will have the same level of a reaction every time she has a peanut from here until the day she dies — which is a complete contradiction from what the earlier doctor said. I’ve poked around on the internet enough to know that most organizations subscribe to the same theory as the first allergist, but how much of that is paranoid parenting, the same kind of thinking that encourages us to bleach everything our kids touch so that the tiniest germ cannot survive to make them sick?

We also learned from the new allergist that the likelihood of Grace dying from anaphylactic shock is minimal at best. Apparently the folks who die from a reaction to their peanut allergy are those that also struggle with asthma — which Grace does not have. Again this is a contradiction from what our earlier allergist said; he said there is chance of her throat closing up and preventing her from breathing, and he never mentioned pre-existing asthma at all.

I’m somewhat frustrated. I know that doctors don’t understand allergies at all. We have no clue why kids are allergic to various things, what sets off the allergies, or why the number of allergic children has doubled in the last ten or fifteen years (pick up the latest issue of Newsweek if you’re interested in reading more about it). Theories abound, of course. There are those that believe that our hyper-vigilance in cleanliness is to blame, that we’re so paranoid about germs that children’s bodies no longer know what’s to be fought off and what should be allowed in the body, so they start attacking molecules that should be safe. There are those that believe that the avoidance in infancy and toddlerhood of possible allergens (parents nowadays are advised to hold off on such things as peanuts and fish until a child’s third to fifth birthday in hopes of staving off reactions) may be leading to allergies. Children in other countries where such things are eaten at a very young age, like Thailand and China and Japan, do not suffer the number of allergies that American children suffer. And no one knows what the cause is.

I just wish someone could figure something out. We’re working on finding a cure for cancer, which I think is a very admirable cause. But let’s work on figuring out allergies as well and find a way to deal with them and even cure them! I don’t want my kid to have to sit in peanut-free zone at school. I don’t want Grace to be the reason mothers can’t bake homemade goodies and bring them to school for their kids’ birthdays. I don’t want her to be singled out because she’s different. I don’t want to have to teach every teacher and nurse and administrator at her school and every babysitter she has how to use an Epi-Pen. I don’t want to have to leave the playground because some kids are enjoying some trail mix.

I also wish I weren’t being given such contradictory information by two different doctors in the profession. Let’s get our act together, shall we? Let’s decide on a common course of action and stick with it so that I don’t go overly paranoid because of what one allergist says, and then get totally lax because of what another allergist says.

It’s hard enough being a parent to a child with no issues at all. It’s doubly hard when you have to monitor everything that goes into your child’s mouth.

But we’ll make it. It could be worse.


7 Responses to “A partial reprieve”

  1. Shear Says:

    I would take Grace’s old doctor’s advice. One of my customers lost her grandaughter because she ate a brownie that contained chopped peanuts. Unfortunately, the parents of the girl she was spending the night with were not informed of any food allergies.

  2. Terri Says:

    Jeez. It’s crazy how different doctors have different diagnosises. Was that a word? ๐Ÿ™‚ Anyway, I understand your frustration! It seems like every doctor has a different opinion and it’s not just a little different, but earth shatteringly different!

    I had that scratch test done a while back. It was interesting to discover allergies I wasn’t aware of. Bird feathers are apparently very bad for me. Who knew? LOL And horses? That’s kind of a bummer, but easier to avoid then dust.

    Best of luck to you and Gracie!

  3. twisterjester Says:

    I suspect the newest doctor is right – but what it boils down to is this: are you willing to take the risk? You already know she’s allergic. The hives may not be life-threatening, but they’re definitely uncomfortable (I’ve had them – I remember it well!) And for her throat to swell, it simply means the hives are inside her throat. So it’s entirely possible that BOTH doctors are right…

  4. cardiogirl Says:

    I’m with Shear, I would be wary of ANY kind of nut. What a pain in the neck, bluesleepy. I have to say as a side note, I am always given the double chuckle of “Whiskey Tango Foxtrot” when I see it.

    I always question, what? That’s an interesting phrase. And then it hits me, OHHH! Oh, that’s clever! I like that. And for some reason I never remember it and I always have that thought process when I see it.

    Thanks for the smile, blue.

  5. Tracy Says:

    Hi – I’m a mom of an 8-year old with a peanut allergy who surfed in via google alerts. Your second doctor is right that asthma and allergies together are more likely to result in fatalities (there have been studies of this). However, there have also been people who have died with only having had minor reactions in the past, so for us it’s not worth the risk of allowing any exposure.

    Have you checked out FAAN yet? I’ve found them to be very helpful:

    Also, here’s a message board for parents of kids with peanut or other food allergies, if you ever need to check in with folks who have experienced this:

    Best wishes!

  6. Margie Says:

    Our granddaughter is allergic to milk. (Among other things) Do you know what all has milk products in it? Butter, cheese, on and on. We have to be extremely careful. If there is a slight question, we avoid. And we keep benedryl near. Hopefully your Grace and our Samara will outgrow their allergies. My son had asthma and his last attack was when he was five, he’s 20 now. So, it is possible.

    I found your blog on cardiogirl’s and thought I would drop in. I’ve only read a couple of your blogs so far but have enjoyed them.

    Most kids chop their bangs at one time or another. I did it too. ๐Ÿ™‚

  7. Fi Says:

    My eldest was diagnosed as allergic to oranges when he was a toddler. (Just oranges, no other citrus) We had three different doctors (all from the same practice) give us three different opinions. One said his allergy would get progressively worse with time, one said that what we had was all there would ever be and one said to keep him strictly away from oranges for five years and try him again, he would grow out of it. Three specialists, three totally different lots of advice.

    We decided not to risk it and avoided oranges assiduously. All his friends and their parent, teachers and relatives were warned. We did everything we could to keep him safe.

    When he was 12, he decided, off his own bat, to try again. I had the epi-pen ready but there was no reaction at all. Now, as long as he doesn’t totally pig out, he can eat oranges with impunity.

    So, no, the doctors don’t always know what they are talking about. Every case is different but a childhood allergy is not always a life-long problem.

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