Peanut Allergy: Safe Camp for Kids: Camp TAG

If you live in the Joliet, IL area, Philadelphia, PA area, or the Sandy Spring, MD area and hope to give your food allergic child a normal camp experience without the worry of reactions, then check out Camp TAG, created by FAAN.

About the program:

Camp TAG is a 5-day, half-day camp for children ages 3-12 that will launch in summer 2011. It will provide a safe place for children with food allergies and their siblings to have fun with no worries about having an allergic reaction, as well as give them an opportunity to meet other children who share the same conditions and know they are not alone!

Camp TAG will provide community outreach and educational opportunities for children with food allergies, their siblings, and parents. It will be 95% fun and 5% educational with age-appropriate activities and games each day on food allergies, anaphylaxis, nutrition, the emotional impact that food allergies have on the child and family, and how to stay safe at school and at home. An educational curriculum has been designed and reviewed by FAAN's Medical Advisory Board.

A registered nurse who specializes in food allergies, anaphylaxis, and epinephrine administration will be onsite at all times at each location.  An allergy-friendly snack will be provided, along with water.

The price is pretty great too (well, compared to SF Bay Area summer camp costs).

How I wish there was a Camp TAG near us this summer!

Peanut Allergy: Doing Your Homework

Are you familiar with FAAN?

If you aren't, you should be.

FAAN is the Food Allergy & Anaphylaxis Network.  In a nutshell (bah!):

The Food Allergy & Anaphylaxis Network (FAAN) was established in 1991. Anne Muñoz-Furlong founded the organization after her daughter was diagnosed with milk and egg allergy as an infant. She discovered that information vital to raising a child with food allergies was not widely available.

When B was diagnosed, her Allergist gave me a slip of paper with his direct line (I know!) and their URL: www.foodallergy.org.  I walked out of the office overwhelmed, but armed with two amazing gifts.  Boy, am I glad I have both of those things.  Our allergist is an angel and I can't count the number of times I've gone to the FAAN site for help.

FAAN also holds conferences.  I'll be at the June 11th event in Anaheim.  It will be a chance to bond with other Food Allergy families, learn more about handling allergies day to day (as a parent or as an adult/teen dealing with allergies) and keeping up to date on the latest research.  I cannot wait! 

B will have just gotten out of school, so she's going to join me along with my husband.  When I mentioned there was an allergy conference happening she insisted that she wanted to go.  Unfortunately there isn't a kid's track, but I'm hoping she can at least come down and see a little of the action at the conference before I go in to sessions.

I told her it was in Anaheim.  She has NO IDEA what that means, specifically that a guy named Mickey Mouse lives nearby. 

She's gonna freak her freak. I love surprising that kid!!

If you're attending, please let me know so we can meet!  If there's enough of us, maybe I can set up a little meet and greet - it would be so awesome to put faces to the names that comment here :)

Bowling (for Brian)..

Yesterday our local FAAN chapter held a "Strike Out Food Allergies!" bowling fundraising event. Mark, B and I (along with Mark's brother, his wife, and their kids) attended and had a ball (no pun intended)! You always forget how much of a workout it is to throw around a 10 pound ball and use muscles you didn't know you had. But we had a great time and helped raise money for a great cause (and we even won a raffle prize - 2 lift tickets to Sugar Bowl - score!).

But the event wasn't without some seriousness as to why we were there. We were fortunate to have a very special guest speaker - Brian Hom's father, Brian Hom, Sr. was there to talk about his family's experience losing their son due to a peanut allergy just a few short months ago while on their first night of vacation in Cab San Lucas, Mexico.

My post here doesn't do his speech justice. Brian's composure while talking of the details of his son's death in front of his eyes was amazing. If you looked around the room, you saw other mothers (me included) crying as he recounted his son's last words to him, the nature of his son's allergies before the trip (just some hives that would clear up with benadryl), the details of how he died in the hotel lobby, the agony of planning his son's funeral just weeks after he graduated (and in close proximity to his 18th birthday), and how the true cause of death (anaphylaxis) wasn't listed on the death certificate (heart attack was even though the autopsy showed anaphylaxis).

This could have been any of us there.

The talk really brought home how serious food allergies are and that you should never make assumptions about them (specifically that your next reaction will be the same as the last). That you need to get tested properly by an allergist and take the proper precautions to keep your child safe (which isn't to say that either applied to him - apparently they did have epi pens there and Brian's brother, also peanut allergic, received a shot due to his reaction as well and his life was saved). Brian really wants to make sure families work as hard as possible to minimize the possibility of this happening to them.

Brian repeated a very well known statement: noone should ever bury their child. He's of course, right. You usually hear this from parents burying casualties of war. But I suppose we are fighting a battle of sorts, aren't we?

I hate to be morbid, but I think parents of allergic children hold this thought and fear of death in their back pockets at all times. It's always there for me, hovering, and it's a real possibility (which sucks). Personally I have thoughts of B's death more often than I'd care to admit and hate to think that there IS a possibility of her passing before I do. I have these flashes of the worst happening to B because I didn't plan well enough or wasn't there when she needed me - it's horrible and I know many of you can relate. It's absolutely terrifying to imagine, and obviously even worse to experience firsthand.

Personally I can't thank Brian enough for speaking to our group. I wish I could have done it in person, but I was so emotional after hearing his talk that I feared that I would break down. I'm hoping to find his email address so I can write to him though, to encourage him to keep telling his story.

So Mark and I are supposed to be going to Mexico next year with his folks for their anniversary. At a resort much like the one Brian's family went to. After hearing Brian's story, I'm not so sure this is a risk we're willing to take with B (that is unless we have a negative skin and rast at B's next allergist visit). Not to say that we will never travel internationally EVER, I just feel like we should hold off for a while (Mark felt otherwise until he heard Brian speak).

Am I overreacting? How many of you travel internationally? If so, what precautions do you take to avoid reactions?

FAAN Walk: San Francisco!

Saturday was the FAAN Walk for San Francisco. It was amazing. Rainy (can you believe it?), but amazing. Our support group, SF Food Allergy, had a table there. We had some super cute buttons made up (I'll post a photo soon), gave out literature, and spread the word about the support we offer folks in person on the SF Peninsula and online via our Yahoo Group.

So why was the walk amazing? You mean besides the fact that there was parking right there, even though we were in Golden Gate Park :)?

All joking aside, it was amazing to meet so many parents of allergic kids and talk with them (albeit briefly) about the challenges they face day-to-day. It was amazing to see so many allergic kids running around, having a ball, and just being kids at a party they were definitely included in and where they were safe. It was amazing to meet other allergy bloggers too (Hi Alison!). I hate to sound sappy, but it was such a unifying experience. Literally every person you met there 'got it'. I got a bit teary at times when I spoke to people.

We (I'm speaking for you Connie) were proud to be a part of the vendors/groups at the walk. They included:

• Dey Corporation (Makers of the EpiPen)
• TwinJect
• Peanut Free Planet - who gave away samples of many of the products they sell and also offered caricatures of the kids - so cute!
  
• Enjoy Life Foods - their new Choco Boom bars are SO good - they were giving away samples of them as well as a good variety of their other products at their table. The kids (um, and us adults) were loving the chocolate bars and cookies. I'm not a huge fan of their baked goods (sorry, just being truthful here), but I would eat their rice crisp Choco Boom bars over a Nestle Crunch Bar any day of the week. Honestly!
  
• Crayon Sports Drinks - not only were the drinks tasty, the staff were wonderful too.
  
• FEAST (an online East Bay support group - no link, sorry - i googled and couldn't find one. Leave me a comment if you know their URL or online group link)
  

But that wasn't it! There were bounce houses, face painting, balloon animals, clowns, music, hula dancers, and a Mad Scientist demonstration. Kudos definitely goes to Lynda Taschek who co-chaired the event. She did a super job and was just so darn nice! I'm looking forward to next year's walk and our group's presence there. I already have lots of ideas for next year's event (Lynda, we should talk!).

Lastly, it's not too late to join a walk near you. Visit the FAAN site for a location near you. And if you can't participate, you can always donate.

p.s. So if I wasn't totally lame and had actually charged the battery of my camera, you'd see a gorgeous shot of me and Connie at our table at the walk. Someone from FAAN took a photo, so I'll try to post it once something's live.

FAAN: Food Allergy Alert Notice

I don't usually post these alerts, but since this is a national (maybe even worldwide) product, so here's an update:

**THE FOOD ALLERGY & ANAPHYLAXIS NETWORK SPECIAL FOOD ALLERGY ALERT NOTICE**

ALMOND ALLERGY ALERT
September 5, 2008

The Hershey Company is recalling 7.25-oz. bottles of “Hershey’s Chocolate
Shell Topping” due to undeclared almonds.

The product was available nationwide after July 8, 2008.

Only the 7.25-oz. bottles with code 69N and UPC 346000 were affected.

Consumers with questions may call (800) 468-1714.

If you want to get these notices delivered in your inbox, visit the FAAN page and sign up here.

FAAN Walk - San Francisco, CA

My allergy support group has started a team to walk in the Food Allergy & Anaphylaxis Network (FAAN) Walk for Food Allergy this September in San Francisco.

What's the Food Allergy Walk? Here's a great description from their site:

The Food Allergy & Anaphylaxis Network (FAAN) is the world’s leading nonprofit organization in the fight for food allergy awareness, education, and research. Over the past four years, thousands of walkers and volunteers have gathered in communities around the country to build awareness of food allergies and to raise funds to support research and education programs. The FAAN Walk for Food Allergy events have raised $4 million, with an additional $2.5 million forecasted for the 2008 season.

We walk to find a cure for food allergies for your family member, friend, student, or colleague! We walk to increase awareness of food allergy and the effect it has on a community. We walk to provide understanding, hope, and an opportunity for a child with food allergy to simply be a child. We walk to save a child’s life!

To learn more about our team (or to join us!), visit our page on the Food Allergy Walk site.

Can't walk with us? How about making a donation to help us meet our goals? You can donate via my personal page and all donations will count towards the team's goal of $2500.

Want to find a walk in your city? Visit the FAAN site for a list of locations.

Any type of support is appreciated no matter how big - even a shout out on your blog or website (regardless of what your site is about)! Thanks in advance for your support!

The One Where I Come Back and Talk About the Isolation I'm Going Through

Hi Everyone,

First of all, sorry for my absence. Between work, illness, and family, I've just been plain overwhelmed.

Have you guys ever been in one of those funks where you just feel like you're in the movie Groundhog Day? I've been feeling a lot like that lately. I feel like I've been sick forever (I'm at the tail end of it, but yes I am still congested!) and all I do is wake up, get Bella ready for school, go to work, pick up Bella, come home, cook dinner, do chores, run her bath, etc., etc. I don't know how I am going to get out of this funk, but it better be soon.

I'm going a little crazy people :)

My mother's day was ok (not bad, not great), but now Mark is getting a cold and we ALL know how men are with colds (sorry if I am being sexist here). I could cry thinking about all the 'taking care' of him I'm going to have to do. Sigh...

Oh wait, isn't this a peanut allergy blog? Oh yeah.

On the allergy front, two things for today:

1. This week marks the 11th Annual Food Allergy Awareness Week. I'm not suggesting you hold a seminar to educate everyone you know about food allergies, but how about talking to a fellow parent that has a child with a food allergy different than your child's? You can't expect other's to be super vigilant and aware of your child's allergies if you don't make the effort for their situation. Better yet, how about supporting FAAN and their efforts? Even though they are a big organization, they can always use our help.

2. No news about Bella's RAST results. You bet your life that I will be online pronto once I hear from her doctor. I have been trying visualization exercises to imagine what the doctor will say (and what I want him to say). What is it they say about wishful thinking? Maybe all this projecting will come true. Some of you are probably rolling your eyes, but I live in California and used to go to Grateful Dead shows, so I'm bound to get a little hippie-dippie on ya.

Well, off to bed, but I'll be back again soon with better content.

Oh, actually, here's something good: I made this yogurt cake over the weekend and it was spectacular. Sadly, it's not gluten, dairy, or egg free, but by the looks of it, this recipe would work well with substitutions. And if your kids like to cook with you, this is the perfect recipe - you use the empty yogurt tub to measure the rest of the ingredients. So yummy and easy!

Peanut and Tree Nut Survey

Just came across this on the PeanutAllergy.com site and wanted to highlight it here:

Peanut and Tree Nut Allergy Surveys

FAAN and researchers from the University of Michigan Food Allergy Center are conducting three surveys regarding allergic reactions to peanut and/or tree nuts.

We are seeking individuals with allergies to peanuts and/or tree nuts, or parents or guardians of children who are allergic to peanuts and/or tree nuts, to provide information about past reactions. Of primary interest are reactions that have occurred on commercial aircraft, in a school or childcare facility, or as a result of food provided by a restaurant or other food establishment. Those individuals who have had reactions occurring in more than one of these settings are eligible to participate in as many of the surveys as are applicable.

Luckily, we haven't had a reaction in any of these situations (actually at all) since Bella's diagnosis, so I don't have anything to add to the surveys. But if you or your child have, take a minute and help these researchers out.

Every little bit of data helps!