The Devil is in The Peanut

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This week I took Gabriel, my food allergic kid, to the allergist for his check up.  A little background is probably not a bad thing here.

When Gabe was a baby, I couldn't figure out why he constantly had hives.  He wheezed often and had been treated for asthma several times before he was 2 - but it wasn't called asthma - it was labeled "reactive airways" so as not to alarm the insurance company.  Whatev. Call a spade a spade - when a kid gets his own home nebulizer before his second birthday, odds are pretty good no one thinks he'll outgrow the wheezing and retracting.  I quickly became very good at noticing retraction, counting breaths, using the stethoscope and checking nail beds for color, to ascertain how much oxygen he had in his system.

So, we were finally sent to the Children's Hospital, where we met the allergist who turned out to be a Godsend for my kids.  She took an extensive history and did a skin test, where my kid burst into enormous hives from four different tree nuts, coconut, and dog and cat, as well as several environmental allergens.  He also had a small positive for peanut - but it was a small one. We followed that test with a CAP-RAST to test his levels, as well as to have a baseline.  No surprises there; his numbers for the tree nuts and coconut were through the roof, but the peanut barely registered.  No matter. Any positive, no matter now small, is still a positive. The peanut was a very small allergen, and so I never took it 100% seriously - I was adamant and thorough about tree nuts and coconut - if there was even a hint of cross contamination, I knew he'd react violently and so we practiced strict avoidance.  Every food label has to be checked every time he eats it, because companies changes and safe granola bars can sport coconut the next time you buy them, even if he's had them for five years.  True story.  (Thanks so much Quaker granola bars. We really appreciated that ingredient change.)

We've had a couple of accidental exposures with regards to coconut and tree nuts, and used the epi pen once.  We've had to call the allergist and hold on the line while I dictated the changes in his hives and breathing, with strict orders to be ready to call 911 in two minutes if there was one change. I belong to food allergy groups, he wears a medic alert bracelet, I call companies to see if they have dedicated nut free production lines, he knows how to read his own labels, and we carry food everywhere we go.

I like to think we know what we are doing. I can be SO WRONG. Am I at least cute when I'm cocky?

When we went for his check, we decided that, since his peanut number was so low, and he hadn't had a reaction to any accidental exposure, we'd do another skin test, just to check.  The allergist was confident that the skin test would be negative.  After all, 20% of those with peanut allergies outgrow them, as compared with the almost negative number (just 9%) of those with tree nut and other allergies. Gabriel wasn't buying any part of it, and he clutched my hand tightly.  His breathing sped up and his heart raced.  "Mommy, I'm so nervous.  I don't want to do this!"  No matter, I assured him.  Nothing bad would happen, even the allergist said so, and she gave him a big hug.  He wasn't buying any part of it, and as his arm was swabbed and pricked, the tears leaked from his big gray blue eyes.

I felt horrible but I tried not to show it.  I didn't want him to know how desperately I really wanted to do this test.  It was certain to be negative, and being able to add peanut back into his diet would make our lives so much easier.  No more soy butter, there'd be many more food open to him - it would be no trouble to avoid tree nuts and coconut if the peanut was available. I talked it up to him - how wonderful it'd be when it came back negative, how he could have a peanut butter sandwich, eat a Reese's cup, eat at Chik-fil-a.

You know where this is going, I'm sure.

A minute in, the spot began to bloom. "Huh." said the allergist.  "That's a surprise.  Well, it's definitely small enough, I think we should do a food challenge."  She explained the details of the challenge - 6 hours at the hospital, being able to hang out with her - she's really a cool lady and Gabe loves her - injesting a grain of peanut butter at a time until he worked up to 2 tablespoons, and he'd be declared no longer peanut allergic. He could watch movies, read a book - she made it sound like a lot of fun.

Except that the welt continued to grow, and by the end of the appt, it was nice and big and we all agreed that the food challenge was now FAR off the table.  He's now more allergic to peanut than before - without blood work it's difficult to say the exact number, but it's probably safe to say he's at least a Class 3 now.  He's a 5 and 6 to other allergens.

So, I feel awful, because it was originally my idea to challenge, to make my life easier. Peanuts, and peanut butter, chik-fil-a and anything with any kind of peanut are now more than ever off the table.

Comments

[kalisah]

What are tree nuts?

You can tell that we've had no allergy challenges here. I can't even fathom how much of a hassle that's been.

[Carmen]

Tree nuts are walnuts, pecans, cashews, yadda yadda. ;)

[Heather]

Poor Gabe! We really need to take both of our kids in to be tested...just last week my son broke out in a rash on his torso that we have no idea where it came from. They both have eczema but the pedi here keeps telling us not to sweat it. I'm just tired of them being miserable and would love to know if there's something I can do to prevent it!

[Anna]

Hey, if you want to know my super huge mommy guilt of the week, e-mail me. It's almost as bad.
Sorry he failed the challenge. Our worst food issue is lactose intolerance. But I have a few friends that are regulars at FAAN.

[kyoot]

I feel so bad for him. It's very difficult to get people ot understand Allergies when they have never ever had them. We we revisiting my family at Easter and they bought all kinds of Veggies trays with mushrooms on them. We were also asked to deliver a Tray to my aunt at her house. I had to give Hubbie a huge dose of Claritin and Reactin before we left my parents house. I will never put fresh mushrooms in my car again!

[Nicki]

I understand, but please don't feel bad. Seriously, it could just as easily have gone the other way with no reaction at all. Since the allergist felt confident it would go that way, I don't think you were wrong to test it out. I take my youngest in to the allergist on Monday for his one year exam, and I keep harboring the hope (albeit not a realistic one) that he has outgrown his peanut allergy.

[beebalm]

I'm so sorry the result wasn't what you hoped, but at least you didn't find out the hard way later. I'm taking my 6-yr-old in for his second peanut challenge...his RAST levels were undetectable this time, so we're trying again. Two years ago he got hives from the first bite of PB during the food challenge. Unfortunately, my 3-yr-old is clearly allergic to peanuts, too, so no matter what, I'm not going to lose the Epipen anytime soon!

[Headless Mom]

Bummer. It's ok to hope, don't beat yourself up, though.

We have a (related) new thing around here-my 9yo gets severe stomach aches when he has milk and cheese. Joy. His favorite thing on the planet is ice cream.

Yeah, I have been giving him protein/milkshakes for breakfast for months. Mom of the year!

[Bobbie]

Both of my sons are allergic to peanuts AND tree nuts (very unusual, according to our allergist). When my older son was first diagnosed, the doctor said no one ever outgrew peanut allergies. Fast forward fifteen years, and obviously that's no longer true.

The allergist sent my kids for blood tests to see whether they had outgrown their allergies - I think this method is more accurate than the skin test (and for the record, they will both be allergic to all nuts for life....).

[elizabeth]

You are a mother of multiple children, an awesome blog busy woman, and have tons of other stuff going on. There is no reason to feel bad for the want to make life a bit easier. AND it would have made it easier for him also - food allergies suck - period!
I am sorry though - for both of you...

[Beth]

My 15 year old son has SEVERE allergies to tree nuts and peanuts as well. Last August, I girl that had a crush on him made him some fudge. He asked if there were any peanuts or tree nuts in them and she said no (her brother loves peanut butter but hates peanuts...). My son did not tell her that he was allergic. One bite in and my son knew something was wrong....there were no nuts themselves, but there was peanut butter. My daughter rushed him to the hospital and I immediately left work. They gave him the usual meds, neb treatments, iv, etc. He got up to use the restroom and collapsed in my arms. The meds made his blood pressure plummet. We were given accommodations for the night and finally able to leave the next afternoon. Needless to say, he now knows he must be more specific when asking...he has always been sooo good about it, but the one time he didn't....

[Crisanne]

Poor Gabe. Food allergies really do stink! Thankfully I don't know much about peanut allergies, but I thought using peanut oil was different than regular peanuts. Then again, probably not be worth the chance.

[MelissaS]

Just know that you did the right thing by testing him again, regardless of the short-term discomfort for Gabe. What if you had continued to believe it was a minor allergy and he had a life-threatening attack outside a medical facility?? I understand your eagerness to find a negative result - my son is allergic to dairy and eggs and I am calling today to make his annual appointment. I am hoping beyond hope that he grows out of these allergies, just so he can enjoy the treats all his friends have, and so that I don't have to be so careful when cooking dinners!

[Bama Cheryl]

You did the right thing, Carmen. Both our granddaughters have reactive airways, asthma - whatever you want to call it. We have been nebbing since the oldest (now almost 4) was about four months old. They both know how to hold the neb and sit (mostly) quietly until it's over. Glad you took Gabe and found the results, despite the worsening. It's all part of being a great mom.

[Jen]

Ah Carmen, you were trying to make things easier, you had good intentions. I'm sorry it turned out worse. Motherhood, we can't always win, we just try our best.

[Annika]

Oh man, what a disappointment!

[Issa]

Poor Gabe...but at least now you know, right?

God aren't insurance companies just awesome. I have trouble getting insurance for me and one of my kids because of asthma. They act like it's such a weird thing. Like it's leprosy or something, instead of something we were basically born with. Sigh. Another reason on the move to Canada list.

[Catherine]

I have read that those with soy allergies need to stay away from peanuts as well (since they're both legumes?) Maybe it works the other way around, too? Another piece of advice you didn't ask for--have you ever tried taking then to a chiropractor/naturopath? My friend and I have taken our children to a doctor who practices at this clinic (http://www.nutrition-clinic.com/). My friend's daughter has actually been able to overcome some of her allergies (egg and maybe peanut--too soon to tell) as well as greatly reduce her asthma through our chiropractor's natural remedies.

[jess]

Food allergies suck! Bryant had colic until I realized that he was lactose intolerant. Still at 16 he cannot have like a milk shake and a pizza in the same setting.

[Laurie]

Have you ever tried SunButter? Much better than soy butter!

[Kate]

My daughter has a peanut allergy and has learned to be very proactive about it. She reads labels, does not accept food from others, and has is able to live a very normal life despite avoiding peanuts or products exposed to nuts during manufacturing. We are fortunate that her school is nut free and is now serving soynut butter as the alternative lunch in lieu of PB&J.

We have tried Sun Butter, but overwhelmingly prefer soynut butter because it tastes so much like peanut butter (which my husband and other children appreciate) and it cooks like peanut butter. Here is the website of out favorite brand.

http://www.soynutbutter.com/