Not anaphylactic, however still there

I had thought and rejoiced my now 11yo son's food allergy to egg/milk has worked it's way out - however, Not.  He surely wasn't responding with anaphylaxis when eating pizza or donuts.

That is surely a joy!!

However, eggs in donuts seem to have caused him diarrhea two days later (and discomfort in between).
Dairy in pizzas (cheese) over time has caused his lungs to react very slowly, to the point where he started wheezing when a cold virus hit him.

So off to being "off" of those again.  It's better for him that way and for us as well.
He at least got to try them, and is now making the connection of what makes him feel bad.

Big growth compared to a toddler where Parents are responsible for what goes in and the result and the aftercare! I am so glad he's slowly and surely able to take responsibility on his own.  Thanks for Growth.

Out grown Asthma and some food

Long forgotten blog - visiting after quite some time when I realized it existed, to give some quick update.

Great News!
My son no longer has asthma, according to his new doctor in the new city.  It's probably been about 2 years since he's last seen his previous doctor in CO.  After moving to GA, we quickly found an allergist just to establish the basic care, and that's what the doctor told us after checking his lungs.
Horray!!

Another Great News!
My son, at the age of 10, has somehow found he can eat yogurt and cheese, with no problems.  Around age 7 or so, there was an accident where I only later found that he seemed to have eaten parmesan cheese - with no problems.  Never wanted to confirm it on my own, so it was neglected, BUT, my son being sort of curious, and feeling a bit confident, decided to make sure where the epi-pen was (perhaps that was me), and went ahead and licked, tasted, and went on to eat.
He says it's not his favorite, but he could have it without problems.  He's always wondered what and how these two dairy tasted like, as his friends love cheese pizza (of course).

He's not trying straight milk - and I think that's smart.
It was a long time ago, when he was not even 1yo, that he had a couple of anaphylactic reactions to mildly boiled milk.  It was on the top of our "to avoid list" - but now, "we" can drop the guard!

So thankful, very grateful.

So, those parents out there wondering what's going to happen to your kids, there's plenty of hope!

Sending love to those who read this, especially the struggling parents.

PAFAP meeting in Japan

What a great joy it was to be able to attend one of the meetings/cooking lessons in Tokyo, Japan!

Parents' Association for Food Allergic Patients (PAFAP, in Japanese) has organized a meeting with two lectures and a seasonal cooking lesson.

1. PAFAP founder Ms.Takeuchi prepared a powerpoint lecture on how to read food information labels.

She has been involved with the administrations in setting up the regulations, has been a great advocate and had been leading food allergy support groups for many years. She shared how she is proud that the "may contain" message is eliminated and is illegal in Japan, so that people are not turned away from trying things that "may contain" certain items. Also shared were specific dairy, egg, wheat names and how they can come in different forms and also be hidden, not expressively written - must be very hard for travelers - it's even impossible for Japanese if we don't have these knowledge to accurately know what's in a product!

2. The next lecture was from Nippon Ham, a big national company that produces lots of meat/ham products.

She shared how corporates developed and uses tests so that they can meet the labeling regulations set (and to be tightened further) in recent years. She also shared their allergy efforts, which has originated about 6 years ago in response to consumers voice. Now they have some fine products that are safe and widely available. Very visual and informative, and what was nice was to know that corporates actually do try to listen and cooperate with consumers! This was an area I tended to stay away - calling up companies to check the ingredients, production process, telling our wishes, etc. Certainly felt empowered that it's OK to do so, and even more so, welcomed to do so (hope it's true in the US as well. Any experiences out there?)

3. We had a cooking lesson from a professional nutritionist from a big school who was invited to come over on a 3 hour bullet train ride from the west side of Japan!! Ms. Noda incorporated the Girls Festiveal (March 3rd) theme into the lesson, and out came a really cute, and very yummy product:) More photos and details (i.e. recipi) to follow some other time if I can get permission to share them.

Just wanted to share the excitement - I'm certainly inspired to get this blogsite going a bit more. I am certainly in awe seeing/meeting these pioneers with so much energy they can move the administration and corporations. Thanks to their work in the past, I have so much more choices to feed my child today.

They have asked if I could share some experience/information from living in the US, and I hope FAAN will let me translate some of their articles. Hopefully I'll be able to do it the other way around (share some info on PAFAP's newsletter in English here) as well.

Cheri Golub Says:
February 27, 2010 at 7:10 am

Hi everyone,

Just wanted to let you know of some upcoming dates. The 3rd annual FAAN Walk for Food Allergy in Long Branch, NJ has been scheduled for Saturday, Sept. 11, 2010 (registration begins at 9am and the Walk starts at 10am). The Walk will once again take place at the Great Lawn just north of Pier Village. We are in the planning stages for the Walk right now but we’ll be announcing some exciting events/performances happening at this year’s Walk. mr. RAY will be returning to perform this year but he’ll be bringing some suprise guests with him. Also, Janice Lieberman will be the emcee for the Walk. Ms. Lieberman has been the featured Consumer Smarts correspondent on NBC’s “Today Show” for ten years and was previously the consumer correspondent on “Good Morning America”. Lieberman also anchored “Steals and Deals”, which appeared nightly on CNBC.

You can register for the Walk by visiting http://www.foodallergywalk.org and selecting the Long Branch, NJ location.

We have also planned another food allergy awareness day & peanut- and nut-free baseball game with the Lakewood BlueClaws. This is sheduled for Sunday, June 6th at 1:05 pm. Tickets are $10 each. In an effort to help protect allergic fans and in honor of all individuals with food allergies, the BlueClaws will have ingredients list available for every food item sold. That day, all items sold at the concession stands will be peanut- and tree nut-free. Seats will be washed down prior to the game to ensure that there will be no food residue. Fans are advised to arrive early as this will also be Kids Expo and Zoo Claws Day, which will feature music, fun, games, and more. This day is also Kids Character Sunday and Kids Eat Free Sunday. mr. RAY, children's singer/songwriter will perform during the seventh- inning stretch and will throw out the first pitch.

***We are also looking for volunteers for both events. Please let us know if you are interested. FAAN is participating in an exciting volunteer program with Disney Parks called “Give a Day, Get a Day”. One day of volunteer work can get you one free day at one of the Disney Parks.***

For more information about the Walk or to purchase tickets for the BlueClaws game, please contact:

Cherﾃｭ Golub
Walk chairperson
FAAN Walk for Food Allergy ~ Long Branch, NJ ~ Sept. 11, 2010
http://www.foodallergywalk.org
E-mail: longbranchchair@foodallergy.org
Phone: 732.239.8374

LonelyPlate.org

Sharing yet one more note that came around via our local mailing list. I'm sure Sharona, the original writer wouldn't mind the publicity! Check out the website (www.lonelyplate.org) and post a review of businesses you've visited!

Greetings Support Group Leaders, To introduce myself, up until a year and a half ago, I was News Coverage Manager at CNN's Washington Bureau where beyond my daily news responsibilities I produced many stories on food allergies with chief medical correspondent Dr. Sanjay Gupta. You can find online some of the TV transcripts and CNN.com articles I wrote on the subject, including a report on Sabrina Shannon, which won a number of journalism awards, including from FAAN. I became interested in the subject after my daughter was diagnosed with multiple food allergies (at the time, allergic to all major allergens + a few). I'm writing you as I'm in the process of launching a website where families with food allergic kids/parents can write reviews about restaurants they visit. There are fantastic online resources reviewing restaurants and hotels, (Tripadvisor, Yelp, VirtualTourist, etc.) but because I couldn't find any that consolidated the experiences of those with food allergies, I decided to create an interactive database where we can review restaurants, hotels, airlines, and kid-friendly venues (like Disney). Wouldn't it be great to give a shout out to a place that did a great job helping your child have a safe meal, or warn others of a place to stay away from at all cost? The web address is www.lonelyplate.org. I'm asking friends and food allergy support group members to publish the first posts or send me (so I can post for them) reviews of businesses they've visited. This kind of information-sharing is crucial not only to keep each other safe but also can be a message to restaurants that we are a consumer community worth catering to. Among the Washington, D.C. support group members, we have been exchanging this kind of information for years (as I know many of you do in your locales), but we never shared this information with food allergic families in other cities and countries, something I aim to accomplish. Looking forward to hearing from you. I'd appreciate it if you could distribute this email to your group members. Best wishes, Sharona Schwartz

Volunteer to speak at a PSD School Board Meeting

Catherine is soliciting volunteers to speak at the Poudre School District School Board Meetings. For more information, please contact her as well as check out the PSD website: psdschools.org click on Board of Education

Dear Members, Attached is an update on Poudre School District School Board Meeting speaking schedule. We are slowly filling spots. My goal is to have 1 parent speak with each Dr. that signs up. Currently, I have 1 Dr. that I would like to match with a parent. The speaking schedule was created to inform School Board about food allergies. An educated School Board can make better decisions.... Thank you, Catherine

Advocating for Food Allergy Management in Poudre School District RE:

Implementation of SB09-226

Why it is important to Poudre School District School Board Meetings 6:30 pm Boardroom Johansen Support Services Center 2407 LaPorte Ave.

Tuesday March 23-

Doctor: Dr. Kujawska/Someone HERE?

Tuesday April 27- Doctor: Dr. James/Parent: R.T. *

Please watch for changes in meeting schedule via: psdschools.org click on Board of Education

Congratulations Amy!

A message from Catherine:

Dear Members,

Amy Asher RN for Poudre School District was awarded the FAAN scholarship to attend the National School Nurse Conference in Chicago in June! If she is your school nurse or you know her give her a CONGRATULAIONS and thank you for taking the time to learn more about managing food allergies in school!

From Catherine

Huge mystery hives

Not my son, but myself - I have gotten HUGE mystery hives all over my body. I will write down what I am experiencing in case it helps.

Started itching about 30 minutes after I ate McNuggets, french fries, and orange juice at ... I admit, McDonalds. By the time we got home, I had to jump out of the car and run into the bathroom to see what I had on my abdomen. There it was mostly red bumps, some hives. As time progressed, the hives have grown, connected, and it started looking like a world map. Very red on the top of skin, even warm, and itchy.

I had taken Benadryl and applied OTC cortizone, and decided to take a nap. Now when I get up, the swelling and hives on the abdomen and back has eased, it was still red, but the map has faded. Instead however, the itchiness was spreading out more from the shoulder to arms, my buttock to upper legs (then to lower legs and hands, further to the extremeties as time went by).

The next day, once again I have seen spots and hives on the main body, and 12 hours later, again on the legs and arms.

I have gotten looser stool, probably a sign that my body is trying to kick something out, but perhaps not yet completely at this point. The itchiness stings, and sometimes I just have to scratch. Sometimes, I can just be feeling the tingling sensation, just as our legs go to sleep (?) after sitting on them for very long. Fortunately I have not had any breathing problems, but swelling on the face and neck is very unsightly and uncomfortable.

My friend nurse said, Pollen (environmental allergen) or Detergent (irritates the skin) could be possible triggers for hives, but I must have digested something I am allergic to, since the hives have spread from the center of the body towards outside. The only thing I could do pretty much is to take Benadryl, and apply Calamite (used for chicken pox itching) if I wish. Steroids will help with the bump, but Calamite helps better for the itching.

I don't feel too terrible otherwise, just itchy and uncomfortable.

Allergy Music!

This looks so fun I'm going to have to purchase one of his CD - "You Must be Nuts!!" Check out KyleDine.com.

Allergy Season

My dear husband came back with totally red eyes two days ago, a friend has complained about unexplained stuffed nose and heavy head, another friend has mentioned allergies acting up as well... This is only our 3rd spring here, but it does sound like the allergy season is around the corner, if not already here.

Time to start getting into the habits of nasal irrigation, trying to keep the pollen outside and not bringing them in etc. Starting to miss cold cold winter... kind of strange..?