This weekend last year…

September 22, 2008

We got the official diagnosis of peanut allergy for Olivia on Friday afternoon.  D’Arcy was able to leave school early so that he could go to the allergist with us.  I remember feeling like I was drowning as I watched the hive pop up and the nurse said, “it’s positive – let me go get a trainer so we can practice using the epi-pen.”  We came home with a perscription for six epi-pen juniors and a stack of literature.  The brochure that stated in bold: “Your allergist recommends that if you do not have your epinepherine auto-injector with you, you DO NOT EAT!”  brought home the seriousness of what we were dealing with. 

I didn’t cry at first, but one night, while going through all the websites the allergist had given us, trying to learn as much as I could, I came across this site  (make sure you have some kleenex if you click on it!) and lost it.  I sat there in our kitchen with tears streaming down my face and D’Arcy asked me what was wrong?  I couldn’t even speak, just turned the screen of the laptop to show him.   All he could say was, “I guess that makes it  hit home how our lives are going to be changed forever.”

Olivia was only 10 months old, and weaned herself around this time as well.  We realized that she also had GI allergies to dairy and soy.  (We didn’t find out about her anaphylactic egg allergy until close to her birthday when I gave her some boiled egg yolk to get ready for her immunizations.)  We were told to put her on Alimentum, a formula made by Similac in which the milk & soy proteins are broken down so that her body does not recognize them.  It only comes in ready-to-feed cans in Canada which are $1.75/serving.  I figure we have spent close to  $3500 on formula for her this year.  She’s also followed by a dietician, and we are planning to switch her over to rice milk at her 2nd birthday in November.  Although the formula is costly, it has given us peace-of-mind to know she is getting all the proper nutrients.

We’ve had some scary & frustrating moments this year, and have learned a lot!!  She is the proud owner of a sterling silver Medic-Alert Bracelet, because if you have to wear one, it might as well be pretty!  We’ve gone through six epi-pens, although I’m embarassed to say that *we* (D’Arcy & I) have only administered one.  She’s been hospitalized nine times, (that I can recall without double-checking the calendar), staying overnight four of those. The other visits probably averaged around six hours each.  I couldn’t tell you how many phone calls I’ve shared with Olivia’s allergist! We are so lucky that when I call, he usually calls back within 15 minutes. Our GP suspects that Olivia is one of the allergist’s most allergic patient, and probably one of the most facinating because she certainly hasn’t been doing everything “by the book”.

We’ve done two challenges: Eggs in baked goods and Dairy; we failed both miserably.  Neither fail changed the way we’ve learned to live, but either sure would have made our lives that much easier.  If I had to pick just one allergy for her to outgrow (and her allergist does hope that she’ll outgrow *ALL* but peanut, hopefully by school age) I would pick SOY.  Soy is in everything, including many creams that should help her eczema.  I try not to think about how great it would be if she outgrows some of these so that if she does, it will be a bonus!  Sarah even uses Olivia’s allergies to her advantage.  If Olivia has a toy Sarah wants, she’ll say to her:  “Olivia, you can’t have that – you’re ALLERGIC!” 

I would hate for anyone to feel sorry for her – she’s certainly not suffering because of her allergies at this point.  She’s off the charts for her height & weight and otherwise extremely healthy.  We’ve been blessed with friends & family who have been willing to go out of the way to keep her safe.  We have a medical team who are just a phone call away.  My friend Janelle sent us a shopping cart cover from the States so that we can take her into stores without worrying as much. (We had stopped taking her after she had reactions to the cart a couple of times!) Our church has become “Peanut free” and her local grandparents, as well as Auntie Karen & Uncle Kevin, just down the street have made their home peanut/nut free so that she will have an alternate “safehouse” that we can send her to without having to worry.  I’m not sure they know how much that means to us as their houses are technically safer than our own, not knowing what guests bring in!

So, you would think that after a year we would know what we were doing.  As it turns out, we don’t.  Somehow, on Saturday, Olivia was able to pick up the used breakfast dishcloth, covered in egg.  She has her own cloths (& dishes for that matter) that she knows are her own, so I guess this was just normal toddler curiosity.  I caught it before it went into her mouth, so the extent of her reaction was massive hives on her hands, arms, belly and ankles.  (Not sure why the ankles were involved, but they were!)  I gave her a double dose of Benedryl and a dose of Reactine.  After a bath, she looked better & worse (hives tend to show up more after being in water) and because the reaction didn’t seem to be spreading, we put her to bed, but kept checking on her.

Our allergist has put it all into real-life terms for us.  He told us that she can’t live her life in a bubble.  It’s true that we may not be able to prevent reactions sometimes, but as long as we have her epi-pens close by and aren’t afraid to use them in good time, she should be fine.  When she’s able to talk and tell us how she’s feeling, it will get even easier to manage, and we’ve already figured out a system and now take her out to restaurants, the library and even to the playground!  I have become knowledable about things I would never have dreamed, and as a result have become more thoughtful about other people’s situations.

Now that we’ve learned to live with life threatening food allergies, I no longer feel like I am drowning, but can tread water for a really long time if I have to!


3 Responses to “This weekend last year…”

  1. Gabrielle Says:

    Ahhh I remember the Alimentum – it’s really expensive here in the States too! Glad to hear that you are making the lifestyle change work for you and not living in a bubble (which is so easy to do in our situation). Stay positive about outgrowing allergies too – my daughter (about whose peanut allergy I blog) outgrew a milk allergy and tree nut allergy (and had a negative RAST this year although she reacted on the skin test). So it can happen!

  2. Kate Says:

    At various moments in my life, I’ve heard people say, “I don’t know how you do it.” And no matter what “it” was, I always just sort of shrugged and felt confused – you just live your life, you know? You take whatever life hands you and you work with it.

    But still. I don’t know how you do it.

  3. Destiny Says:

    All of you have done such a great job in adjusting to Oliva’s medical issues and that is why she is doing so well in every aspect of life. As hard as it is some days you always seem to take it with such grace and quiet acceptance. You are a really great mom and the moe you share your experiences hopefully more people will be aware and respectful of situations like Olivia’s.

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