One Small Step...

Ella went to sit on Santa's lap at the mall yesterday. (Side note: she LOVES Santa...loves sitting on his lap, loves telling him that she wants a dollhouse and slippers, and even loves playing Santa at home, which involves me sitting on her lap telling her what I want.)

Anyway, she sat with him and chatted for a minute, and then he reached into his sack beside the chair and pulled out a candy cane. Eeek! Not a big deal for other kids, but I have no idea what's in those candy canes or whether some peanutty snack was made in the same factory. Needless to say, I was a little concerned, but I decided that it might be inappropriate for me to sprint over to Santa and smack the candy cane out of his hand. So I decided we'd just throw it out later and scrub her hands.

Then something amazing happened. Santa put the candy back in the bag and gave her a colouring book instead. Hmmm...

Ella jumped off his lap and ran over to us to show us her new colouring book, so of course I asked her about the candy cane. "Did Santa ask you if you wanted a candy cane?" "Yes," she replied. "What did you say?" I asked. And to my great surprise and delight, Ella answered, "I said no."

This may not seem like a big deal, but for an almost-3-year-old to say no to candy is AMAZING. I can only hope that all those times that I tell her that she can't have candy (or anything) without asking me first have started to sink in.

And don't worry, I've ordered some peanut-free candy for Christmas!

Allergen Free Food!

I came across a great CANADIAN website that I thought I would share. It's called Allergy Menu.

Basically it's an online grocery store where you can shop by allergen. So if you're allergic to one (or more) of the top 8 allergens, you just check that box, and it will find safe products for you! They sell everything from trail mixes to spreads to candy to cookies to snack bars to chocolate...basically all the allergen-free stuff that's hard to find at a "regular" grocery store.

What I'm most excited about is the candy. Since Ella's been diagnosed with PA, we've eaten SO many snack-size Aero, Kit Kat, Smarties and Coffee Crisp. I'm kind of getting sick of them. But there's not a whole lot of choice for peanut-free chocolate (especially terrible for me is the fact that my absolute favourite chocolate bar of all time is Reese Peanut Butter Cups). So finding a place where I can get more variety is AWESOME!

What's also cool is the Christmas stuff they have - advent calendars and candy canes! And I thought we'd have to go without!

A Great Video

I just saw this video on another PA blog, and thought I would share it. It's a great tool to help you educate the people in your world about what it's really like to live with a life-threatening allergy on a daily basis. And the kids are cute!

Review: No Nuts For Me

Ella was just over 2 years old when she was diagnosed with her peanut allergy, so trying to teach her about it is a very slow and repetitive process. She has learned to recite that peanuts make her sick, and that her EpiPen is her "special medicine," and that if she ever eats a peanut she needs to use her EpiPen and then call 9-1-1. But I wasn't sure if she really understood it.

So I went looking for a book at the library that she could understand, and I found No Nuts for Me by Aaron Zevy. It's a story about a day in the life of a boy with a nut allergy. The boy in the story is a bit older than Ella (he's elementary-aged), but she loved the book. The boy talks about what he can eat, how he uses his EpiPen, his MedicAlert bracelet, and lots of other stuff. By the time our 3-week library loan period was up, she had almost memorized the whole book!

I loved that the boy in the book focused on what he could do, rather than what he couldn't do. It shows kids that having a peanut allergy isn't the end of the world.

I would recommend the book for kids age 3 to 8 (although Ella understood it at 2).

Support!

I was looking around on the Anaphylaxis Canada website, and I found out that they organize support groups all over the country, for people with anaphylaxis and their parents. I decided to sign up, since I know only one other person with a life-threatening allergy, and I thought it would be good to connect with a few more. Because, let's face it, if you don't deal with the reality of this type of allergy on a day-to-day basis, you have no idea what it's really like.

So I sent an email to the group administrator in my area and she responded within a couple of hours! Pretty amazing for a volunteer-run group! I gave her my info, she added me to the group contact list, and before the day was done, I had 3 more emails from her with info about group meetings, other members and general info. And not only that, but I also had two more emails from other group members offering their support. Wow!

I will go to my first meeting in a couple of weeks, so I'll let you know how it goes. So far, though, I am super impressed with the information, support and care that these people showed me. I would highly recommend this support group! Especially if, like me, your child is newly diagnosed.

A Frantic Visit to the Doctor

I think that being mom to a peanut-allergic kid is going to be a lifetime filled with "is this a reaction?" moments. Or maybe I'll get used to it in a few years. I hope so.

Tonight after dinner, Ella started coughing like crazy. Then she started wheezing. Then I started freaking out. All we'd eaten for dinner was spaghetti (at home, and I never keep anything in the house that even has a "may contain" warning). So it couldn't be a peanut reaction.

Or could it?

There was no swelling, or hives, or vomiting, or anything else similar to her last reaction. But then again, peanut reactions are unpredictable and not necessarily the same every time. And she was definitely having trouble breathing. So what to do? EpiPen? 9-1-1?

We decided to go to the clinic. We would have gone to the ER, but the clinic is literally right around the corner, so we knew a doctor would be able to see her much sooner there. So I stayed at home (to take care of her little brother, who was still finishing his green beans), and daddy took Ella to the doctor. And I continued to freak out.

An agonizing 30 minutes later, they came home. Turns out it wasn't a peanut reaction. The doctor told us that true allergic reactions rarely involve only breathing symptoms - there are almost always skin symptoms, too, like hives or swelling.

What happened to Ella was, however, something. She was definitely have trouble breathing, so the doctor put her on a ventilator to help her breathe, with a steroid to open up her airways, and she was fine after that. 

So, what was the problem? Well, it could have been a freak one-time thing, but there's also a chance that she has developed asthma. We won't really know until it happens again. IF it happens again. We're believing it won't. Because the problem with a diagnosis of both anaphylaxis and asthma is that you are at a greater risk for a severe allergic reaction and even death. And I'm not sure I could handle any more anxiety than I already have...

A Special Bracelet

One of the first things we did when we found out about Ella's PA was order a medical alert ID bracelet. I wanted to make sure that other people knew about the allergy, and also what to do if there was an emergency. With her being so young (only 2 when she was diagnosed), I knew she wouldn't be able to tell people about the allergy, and I also knew she wouldn't even be able to keep herself safe...I mean, this is the kid who still eats gross pieces of food off the floor.

And just in case you're wondering, we chose to engrave:

PEANUT ALLERGY

USE EPIPEN

THEN CALL 911

We thought that would be enough info for people to understand the basics. We thought about adding her name and our contact info, but we decided against that because we didn't want to engrave too much. We wanted it to be quick and easy to read and understand.

After looking at SO MANY medical jewelry sites, I found one that was based in Canada and had very reasonable prices. Beading Hearts sells all types of medical ID jewelry: beaded bracelets, sports bracelets, leather bracelets, pendants, and much more...even ID for your pet! 

We ended up choosing their engravable ID with the sport strap, because the strap adjusts small enough to fit Ella's tiny wrist, and there are no tiny beads for her to choke on (although when she's older, I'm sure she'll want one of the prettier bracelets). I really love that we were able to order a couple of different straps for the bracelet, because Ella gets to choose which bracelet she wants every day. And those of you with toddlers will know how important the illusion of control is to them!

Ella loves her special bracelet. And she really loves when other kids notice it and want to look at it. :)

An Emergency Plan

After reading The Complete Peanut Allergy Handbook by Scott H. Sicherer and Terry Malloy, it was clear to me that I needed to prepare myself for an emergency. Don't get me wrong, I had an EpiPen, and I knew how to use it, but that was the extent of my plan. The book made me realize that a written plan would mean that everyone would know what to do in an emergency, and that everyone would know how to spot an emergency.

So I looked on the internet to find an emergency plan that I could fill out and print off, to give out to the people that Ella regularly spends time with. I found a couple of good emergency plans, from Anaphylaxis Canada, and the Food Allergy & Anaphylaxis Network. But they didn't quite have all the elements that I was looking for, so I decided to make my own.

(This image can be seen larger here.)

I wanted to share it here (minus the personal info, which is blacked out) to give other people an idea about how to make up a plan, and what to include. Our plan had to be very easy to read and understand because the main place that it's used is in the nursery at our church. In a place that's filled with 2-year-olds who may have had peanut butter before coming to class, it's fairly important to make sure the teachers in the class know how to handle an emergency.

A Peanut Allergy?!?!

I couldn't believe it when I found out Ella was allergic to peanuts. There was no family history, I had done everything I could think of to avoid this allergy, and yet, there she was, in the middle of the kitchen, throwing up and turning blotchy after taking her first bite of peanut butter. It was terrifying. It was something that I had feared, but not something that I actually thought would happen to my child.

Of course, we rushed her to a doctor nearby who told us, "She's allergic to peanuts. So don't let her eat them." Thanks, that was helpful. I made an appointment with our family doctor, who referred us to an allergist (an appointment we had to wait an excruciating 8 weeks for). The allergist did the scratch test, which confirmed that Ella was indeed extremely allergic to peanut. He taught me how to use an EpiPen, he gave me a brochure on anaphylaxis, and he sent me home.

But I needed more. I spent hours on the internet learning everything I could about anaphylaxis and peanut allergy. I read blogs. I read government publications. I read research studies. I thought the more information I had, the better able I would be to keep Ella safe. So then I went to the library. I read books. I watched DVDs.

But what I really needed wasn't more and more information. I needed to know that I wasn't alone in this. That there were other moms out there who were just as paranoid as I was. I found reading blogs to be really helpful, because along with the information, they spoke about how it feels to live with a peanut-allergic child.

So that's why I'm writing this. Because I'm sure you're out there, hoping to find someone who is going through the same thing you are. Well, here I am.