Allergy research

Two interesting research links crossed my screen this week, courtesy of google news alerts.

The first was about buckyballs, in nanotech research: "Allergy-fighting buckyballs created". I don't even pretend to understand these, outside of my favourite Greg Bear novels, but it looks promising.

The second sounds just as interesting: "No More Choking And Burning Eyes? New Approach To Eliminating Allergies, Asthma". (via Rational Jenn) This one's for my friends Sarah, Grace and Eric to decipher for me — and tell me how much hope there is in this line of research. I'm a little scared at the potential to de-activate the body's entire immune system, but if it can be properly targeted, then what a relief it would be to have my kids lead "normal" lives!

One super teacher!

I sure hope Andrew's teachers are like this one.

You've got to read this blog entry for one teacher's approach to dealing with allergies in her classroom.

(Via AllergyMoms)

Andrew's birthday party!

It's been such a busy week that I haven't blogged Andrew's birthday party yet!

He's truly madly deeply into Rescue Heroes right now, so we had a Rescue Heroes party for him.

Tony made a Wacky Cake, and then shaped it into a fire engine, based on instructions that we found online. The only problem was that the red food colouring, mixed with the white frosting, turned pink! Not that Andrew noticed. His eyes were just wide from all the candy that was loaded onto the cake -- all safe for his allergies!


He had about 15 kids for his birthday party, at Go Bananas, a kids' climbing centre. We also made wacky cake cupcakes, and decorated them with the same icing. It was a lot faster to hand out cupcakes to the kids than to wait for Andrew to cut through his cake.


And after a long birthday party, plus playing at Nana's house after the party, he totally crashed in the car on the way home, and slept for a couple of hours.

The next morning, he declared his birthday was "the best day ever." I was so happy for him. And we managed a birthday party where he didn't throw up. Whew!

Cobs update

Just a quick update post on Cobs: they apologized for the misinformation and sent me a $10 gift card.

More importantly, they're going to give their staff a briefing on what "dairy" means, including whey and casein, not just the word milk.

I did emphasize to their customer service person that the staff I met at Cobs were uniformly enthusiastic about their product, and they shouldn't be faulted for it. But unless you've gotten the training about allergies, or have allergies yourself, you simply don't know any better.

Another learning experience: Cobs Bread

Geoff and I went to Cobs Bread on Wednesday, when Andrew was in preschool, and picked up a bunch of different treats for us.

I was totally assured by the young woman at the front counter that everything I bought was dairy- and nut-free, so I went ahead and bought a lot of different things -- a blueberry cobbler, a box of lemon tarts, date bun, fruit bun, and whole wheat baguette.

And I let Andrew try them when he got home from preschool. He quite liked the blueberry cobbler, but his favourite was the lemon tart, which he got on Thursday. He ate two of those, one after breakfast and another one after dinner. He did go and play with the neighbourhood kids in the street after that, so I'm sure he burned off all that sugar.

And then this morning, I decided to check on the ingredients when I was writing up this blog post. (All of Cob's nutrition info is available online, so if you've got one near you, you can do your research before you get to the store.)

Well, everything I'd fed to Andrew contains whey powder! It seems that Cob's needs to teach its front counter staff about the other names for dairy, including whey and casein.

Thank goodness nothing happened. I think that Andrew didn't eat much of the blueberry cobbler. And with the lemon tart, he was digging out the lemon filling, but didn't eat the crust.

On the bright side, I did want to test whether his lower dairy allergy scores were for real or not. I guess they are.

Moral of this story: don't trust anything that the front counter clerk tells you about ingredients. Make sure to read it for yourself, despite the "no dairy" signs plastered throughout the store.

And yes, I will be letting Cob's Bread know about my experience.

I love Choices

One of the closest health food stores out here in the suburbs is Choices Community Markets. We went there tonight, and picked up the usual suspects, all of which are safe for Andrew. Their raisin bran muffins contain no dairy and are so yummy. Plus they carry a plain unflavoured quinoa, which we've just discovered and are really enjoying as a new carb. (If you follow the link, you'll find info on its high nutritional value: "quinoa contains a balanced set of essential amino acids for humans, making it an unusually complete foodstuff ... ")

And as we were checking out, the kids got totally interested in the "candy" by the checkout stand. But this time, we were happy to buy it! It was something called Bare Fruit -- bake-dried organic fruit with nothing added but organic coconut oil, for $1.39/bag. Plus it's made in a nut-free facility. So I picked up a bag of bananas & cherries to try it. The kids ate the entire bag on the way home. Okay, so it was a small bag, but they'd had dinner, and shouldn't have been that hungry.

And now that the kids are asleep, I'm just thinking back at the experience of being able to buy something for them at the checkout stand, and feeding it to them in the car, without freaking out about possible allergic reactions. Wow. Is this how other parents of non-allergic kids feel?

I just can't see certain things without wincing any more. We walked through Choices' bulk food aisle, and I grabbed at Andrew when he went too close to the bins of nuts. I went grocery shopping without the kids earlier this week, and almost lost it because of the spilled milk on the checkout conveyor belt -- and I did arrange all of my groceries to not touch any of it. And when we went to Science World last week, I was totally watching all the other parents who were feeding their kids, just to make sure that there were no peanut butter sandwiches.

Yeah, my life is about being paranoid about food.

Tonight was an amazing break from that paranoia. What a nice feeling this is.

want a free Joost invite?

Not allergy-related, but I've got a bunch of free Joost invites to give away. Joost is a prototype tv-on-the-internet service. It's also free for now. There aren't a lot of channels on it yet, but it's an interesting service.

To get one, leave me a comment with your email address, and I'll send one your way. In your comment, you must tell me how you found my blog. Feel free to substitute (at) and (dot) for the obvious parts of your email message.

Hives are all gone

Just a quick update for anyone who's following our saga of Andrew's hives. They're all gone now. Tony actually forgot to give him his Benadryl dosage before bedtime last night, and Andrew slept through the night without any pain or itching. And he hasn't gotten any Benadryl today, because he's not scratching and we can't see any hives.

I did a quick google search on "virus hives" and found a bunch of hits. Apparently it's not uncommon, so it just took a calm doctor to relieve all my fears.

It's yet another childhood ailment that other kids and parents just get through without too much panic. Alas, when you're got allergic kids, full-body hives for over 24 hours aren't something that can be easily brushed off.

The website I found also mentioned that the hives can come and go for the next few weeks, so we'll just keep the Benadryl handy. Oh wait, the Benadryl already comes everywhere with us. So in that aspect, at least, nothing will change.

Sometimes, hives aren't an allergy symptom

Poor Andrew scratched himself all night, and woke up screaming from the itching a couple of times, despite liberal doses of Benadryl.

So I rushed him off to Children's Hospital this morning, and waited for two hours until we were seen. (There was only one person ahead of us when we got there at 7:30, but I guess they didn't have any doctors on.)

The verdict, once we finally got it: he's got some kind of weird virus that's causing the hives. Keep dosing him with Benadryl, and that's all we can do. The virus might last as long as two weeks.

Now I'm just hoping that Geoff doesn't catch this bug.

It took me another couple of hours to relax my system after putting it on red alert. He'd been having hives for almost 24 hours by the time we saw the doctor, and as a parent of a kid with severe allergies, that just hits all my panic buttons.

random hives

Right now, I just want to put Andrew into a plastic bubble and serve him nothing but food that's been certified to be safe for him.

I had to work late today, and when I got home, Tony told me that Andrew was covered in hives and calamine lotion, and had been dosed with Benadryl.

What happened?

We're not sure ourselves. He hasn't eaten anything out of the ordinary today. He got picked up by Granny this morning, and they went and played at the beach. It was cold today, so he was in his galoshes and jacket, and the only exposed skin he had was his face and hands.

But after she washed his hands of all the beach sand and seaweed, she saw that he had what looked like bugbites popping up on his arms. She then took him to his favourite fish&chips place (where the batter only contains water, flour and vinegar, and is SO tasty!) and he had lunch there.

After lunch, the "bug bites" had gotten bigger and itchier, so she called Tony to find out what to do. He came home early and took Andrew to the clinic, who agreed that it was definitely hives. By this time, they were all over Andrew's chest, back, arms and legs.

But he didn't have any breathing difficulties, so they just said to give him Benadryl and cover him in calamine lotion for the itching.

When I got home, I got all of this news. He looked okay, and just a little bit bumpy when I checked his skin. But by around 8:00, he was itchy all over again, and the hives were getting big again.

So we popped him into an oatmeal bath, and dosed him with more Benadryl, and tucked him into bed. I've just checked on him, and it looks like the hives are going down again. Thank goodness he's being so cooperative about everything. He even let Tony trim his fingernails down so that he won't scratch himself bloody in his sleep.

Every cough he makes, and every weird sound I hear from his room, is setting off my fight-or-flight instinct. I'm totally on edge right now, and just trying to calm down.

I hate allergies. I hate that he has them. I hate that we don't know what caused this round of hives. (Our best guess is that maybe someone was shelling peanuts on the beach, and he played in some residue?)

I was riding so high on the fact that his dairy count seems to have decreased from last year. And now I've been brought crashing back to earth with this case of mystery hives.

More allergy blogs added

I've just added a few more great allergy-parenting blogs to my sidebar: Our Story, No Whey, Mama, He Can't Eat That, Food Allergy Queen, Living My Dream and Check My Tag.

Check them out!

Psst! Want a discount on allergen-free granola bars?

I love NoNuttin' Foods, and not just because they're based right here in British Columbia. I pack their granola bars into my kids' snack bag, and even if the other kids have a tasty-looking snack, Andrew's even happier with his chocolate chip granola bar. And of course, I'm happy because it's guaranteed to be nut-free, peanut-free and dairy-free. (For what it's worth, it's also a gluten-free production facility.)

With all of his major allergies, it's just a relief to be able to give him something that's safe for him to eat. This is also a huge help when we're out with friends, and his buddy's snack always looks tastier. (Sigh.)

So anyways, NoNuttin' has a referral offer on right now. Give them the magic coupon code -- "YUMMY" -- and you'll get $10 off your first order. (The fine print: you have to be a first-time customer and there's a minimum order of $50 Cdn, which is about $45 US.)

Full disclosure: If you give them my name -- "allergic mom" -- I'll get a $10 credit too. But even if you don't mention my name, you'll get the credit. And enjoy the allergen-free food too.

Apparently they just got mentioned in the Wall Street Journal for their Double Chocolate Chunk granola bars. Those will definitely be in my next order!

Good news on his dairy allergy

We took Andrew in for his blood test a month ago, and there was a bit of a mixup about whether or not they could actually test for whey and casein separately, or if they could only test for milk. The lab ended up sending his blood sample to a different lab in the city, and we did end up getting RAST results for whey and casein.

Last year, he got about a 65 on the milk RAST test. This year, he's scored a 7 for whey, and a 14 for casein.

Woo hoo!

Yes, 7 and 14 are still in the anaphylactic range, but it's a huge drop from 70! Our fingers are crossed that he'll keep on dropping over the next couple of years, and outgrow his dairy allergy by the time he starts school.

His peanut score was still over a 100, and we tested him on cashews for the first time this year: he got 80. Oh, and his egg white score dropped as well, to 3. So he's still "technically" allergic, but the drop does explain why he can eat a whole boiled egg and not have any physical reaction at all.

Hyper aware of allergies

Andrew and Geoff were giggling in the bathroom last night, as I was cleaning up the living room. When they came out, Andrew had a bandaid over his papercut from preschool yesterday, and Geoff had a Wiggles bandaid on the back of his neck.


We had bathtime just a half hour later, and Geoff was annoyed at the bandaid on his neck, so I peeled it off. Well, there was a rash and little red dots all around the edges of the bandaid.

So I had a good five minutes of sinking feeling in my stomach, and wondering if Geoff has a latex allergy, or if it was just that he'd been picking at it, and irritated his skin. And plotting out life without latex: avoiding birthday party balloons, being careful at doctors' checkups, and all the other places where latex hides.

If I didn't have an allergic kid, I'm sure that I'd have gone with the skin-irritation-from-scratching theory. After all, Occam's razor says, "the simplest solution tends to be the best one."

Instead, since I'm hyper aware of allergies, I went digging for the box of bandaids, and was thoroughly relieved to find that the bandaids are latex-free, so it was probably just irritation. Or an allergy to the adhesive, which is a lot easier to deal with than a latex allergy. One can avoid bandaids. Phew.

Bullies and allergies

I have Google news alerts set up to send me me news and blog postings about allergies. Today's alert included the posting "Mean Grown-Ups," from the Please Don't Pass the Nuts blog. (I've also added a link to this blog in my sidebar.)

This post also links to the Our Story blog, and I found one of the comments so enlightening that I wanted to excerpt it here: "Instead we teach him to be aware of his surroundings himself, to always be on alert. We have worked with the school on awareness and epi training. Everyone knows him and his situation. The school has been very accommodating. My son carries his epi/benedryl everywhere he goes in his fanny pack. He carries wipes with him to use on tables/surfaces he is not familiar with. He washes his hand constantly. Is this alot to ask of a 7 year old? Yes, but to him that is just the way it is. He doesn't know any different.....he has had these allergies all his life yet still leads a very normal life despite his allergies. He does not feel sorry for himself." (comment made by orgjunkie, who, amazingly, is also here in BC. It's a small world.)

I'm lucky that Andrew's not in school yet, but I'm also dreading that day because of these issues of parents who threaten to smear allergic kids with peanut butter.

And I just heard last weekend that my neighbour's 12-year-old daughter had pistachios waved in her face at her high school, with the taunt, "So, are you going to pass out if I do this?" Her mother went up to the school and spoke with the teacher, and was assured that it wouldn't happen again.

Bullying is bad enough in the schools. I get that kids need to play power games, just because they're learning how to deal with life. But when bullying threatens the life of my child, I'm afraid that I'm going to become one of those crusading allergic parents.

And I just don't get the parents who are bullies. They're setting horrible examples for their children, and it's no wonder that bullying then becomes such a huge problem in the schools.

What part of anaphylactic to peanuts don't you understand?

We were playing outside my mom's house today, and the 4-year-old girl from across the street came to join us. She really likes playing with Andrew when their schedules coincide — she's in daycare, and has a few classes scheduled too, so they only see each other once a month or so.

She went back inside at some point, and came out with dog cookies for her huge and friendly dog. Her dad assured us that the cookies were home-made, totally safe for dogs, adults and kids. He listed the ingredients, which included peanut butter.

My stomach churned, and my blood pressure went up, and then I reminded him that Andrew's allergic to peanuts — he'd been told before, but we don't see him very often. He let his daughter feed one cookie to her dog, and then took the tin away from her.

And then the dog proceeded to try to lick all of us. And the dad explained that "he's a licky dog, has been since he was a puppy."

So, what part of anaphylactic to peanuts do you not understand?

I should have just taken the kids inside, but instead, I just tried to keep Andrew away from the dog. He did most of it himself — he doesn't like overly-friendly big dogs anyways. Geoff is fascinated by dogs, so I wasn't so successful at keeping him away, but then again, we don't know if he's allergic to peanuts or not, though he's scratch-tested negative so far.

At the time, it didn't feel right to ask the dad to just put the dog in his back yard while the kids were playing, but that's probably what I should have done. We were only outside playing for half an hour, and then the kids got thirsty and wanted to go inside. (I'd also taken them to the park for an hour earlier, so they had plenty of outside play time.)

Allergy Shock Hits Home

This article from the Victoria News is like a look into our future.

It shocked me, as I’m sure it shocked everyone who heard the tragic news, that a 13-year-old Esquimalt girl died last week from a severe allergic reaction after eating some fast food. ...

My youngest son is about her age and he too carries the burden of a potentially life-threatening allergy. It’s not clear what allergen killed Carley – she had allergies to peanuts and dairy products – however it is clear that she lapsed into anaphylactic shock and never recovered.

His son is about to go off on a band trip, his first without his parents. The fears that fill his head are also in mine. I hope that we'll be able to raise a responsible kid who's not too afraid of the world, and who will be careful with his life.

Anaphylactic Student Protection Act

Another round of support and letters are needed.

On March 28, 2007, the Anaphylactic Student Protection Act, 2007 was introduced in the BC Legislature by an NDP Member of the Legislative Assembly, David Cubberley (MLA for Saanich South and New Democrat Education Critic). There was an impressive show of the support at the legislature by BC advocates and the local media picked up the story with province wide coverage. Overall, the day was quite successful.

Now it's time for action. As the MLAs review the need for this type of legislation, a massive show of support from the public is required. Given that the Bill was introduced by the opposition party (NDP), it's vital that they receive support from the governing party (Liberals) in order to increase the chances of the Bill being passed.

Sara Shannon, mother of the late Sabrina Shannon, sent a letter to each MLA, including the Premier, requesting their support of this non-partisan Bill. Mike Shannon, Sabrina's dad, attended the BC Legislature last week to show his support. For their ongoing efforts, we extend our deepest thanks to them both.

While the second reading is listed on the Orders of the Day for April 16, 2007, there is no guarantee that the Bill will be read that day. We urge you to send an email/letter to show your support today. Take this opportunity to share your story and why you think this Bill is so important. Your email should list some key messages which may include:

- Emphasis on children's safety and protection at schools
- Need for regular training and education for schools on anaphylaxis management
- Raise awareness of anaphylaxis in the community and need for support

For BC Residents: Send your emails directly to your MLA and to those politicians listed below:

For Non-BC Residents: Show your support by emailing:

- Premiere, Gordon Campbell: gordon.campbell.mla@leg.bc.ca

- Hon. Shirley Bond, Minister of Education: shirley.bond.mla@leg.bc.ca

- David Cubberley: david.cubberley.mla@leg.bc.ca

If you are interested in connecting with other BC parents, please contact the following Anaphylaxis Canada members in the BC area:

Pam Lee at: pamela2543@shaw.ca or Caroline Posynick at aspa@posynick.com

Also, if you know of other parents who would be interested in helping to support this bill (with or without children at risk), please forward this email and ask them to send their letter of support as well. Everyone's voice deserves to be heard.

Together we can make a difference.

Anaphylaxis Canada

Another dead teenager

This one's too close to home. A 13-year old girl died from anaphylactic shock after eating with her friends. She had left her epi-pen in her locker, and went to the food fair in the mall.

The Vancouver Sun wrote:
Carley Kohnen, with allergies to a number of foods including dairy and peanuts, ordered a burrito and a doughnut from the Hillside mall food court on Thursday. According to her parents, she was told her food was free of the proteins to which she was deadly allergic. ...

Her parents told her to never try a new food without gaining permission from them first. Throughout Carley's young life her parents had hauled chefs and bakers out from their kitchens to assure them her food was free of dairy, peanut or egg. They read every package that went into making her food.

But in the end, even their best efforts couldn't protect her. Carley was a teenager, said her parents, and she longed to eat the same foods others kids enjoyed.

I know there are thousands of allergic kids who survive their teenage years. I hope Andrew does as well. Stories like this one, however, scare me shitless. Especially since it's the second dead child this week. My heart goes out to her parents.

Administrivia

I've added a couple of allergy-related blogs to my sidebar: No Peanuts Please, Rachel's Recipe Box, Notes from the Trenches and Mama Maven.

Definitely check out Rachel's Recipe Box for a ton of incredible looking recipes. I've really gotten into a food rut in the last year, and I'm hoping this will help me out of that rut.

Also, I've moved my knitting obsession to a new blog: Yarnfloozies, which I'm sharing with my friend Dotty. She's doing more posts than me, but I'm really enjoying our new digs over there.