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..?

"Many 'allergies' are false alarms"

An article from Denver Post - Have thoughts about it, but have sick kids, so hopefully write more later. Read on more here...

Many "allergies" are false alarms

Food Allergy Project and Food Allergy Initiative Merge to Find a Cure

Some topic of interest, two organizations, that has a common goal of finding cure to food allergies merging. Read on more here.

Another local cookingclass from CSU!

The CSU nutrition center has put together a cooking class for
families looking to avoid allergens. See below for details. Please
pass this on to anyone you think may be interested in such a class.

-Pamela

Join us at the Nutrition Center at CSU to learn new recipes and quick
tips for nutritious meals! Every class will feature a few recipes
with cooking and nutrition education, followed by an optional 30-
minute question and answer session.

FFEBRUARY 9TH AND 10TH 6:30PM: "AVOIDING ALLERGENS"

Are you struggling to think of new meal ideas for yourself or loved
ones with multiple food allergies? In this class we will make
several tasty recipes free of gluten, soy, eggs, nuts, and dairy
products. We will also discuss how to get important nutrients that
may be missing or inadequate in an allergen-free diet, and ways to
keep meals interesting when dealing with restrictions. (Class is
repeated – choose just one!)

HHOW TO JOIN

Where: The Nutrition Center, room 114 Gifford Building

When: All classes will be held at 12-1:30 PM unless otherwise
specified.

Cost: $10; limited to first 15 people

Other information: Registration is required for all classes!
Individual appointments with registered dietitians and graduate
students are also available.

Contact: The Nutrition Center at CSU: 491-8615

The Cooking Class...(a report)

... was so wonderful!! Linda Hoffman who runs "Come Back to the Table" had introduced us to healthy, seasonal, fresh ingredients cooking while incorporting and sharing her thoughts on allergies, and responding to our concerns. She has opened up my eyes to the importance of healthy fat/oil, which are so important in building healthy cell membranes, some facts about some legumes/grains, how to shop smart, so much more topics I can't possibly list them all right here.

Linda has mentioned that despite the wide range of our allergies, her regular clients (non-food-allergy clients) cook up something that was not that much different from what we cooked tonight. We had fish, chicken, lamb, beef, beets, lettuce, tomato, red and green peppers, pineapple, cranberry, garlic, coconut oil, grape oil, kale, onion, mushroom, brussel sprouts, grapefruit, murey (?) lemon, lime, sun dried tomato, corn grits, herbs, brocolli, coconut milk, sea salt & pepper...

It was so nice to be in her serious kitchen to get better ideas on how to cook, select, store. Even her entertainment center was filled with dishes etc... not because of food allergies, but because she (must) enjoys it. I feel I got so much information at one night without having to wade through the overwhelming amount of information out there. She's already done that part for us. An interesting closeness and connection I felt, over interest in eating healthy, with an awareness that food is important and that is what builds our bodies and affects our souls.

Thank you for the fabulous night Linda, thank you so much for setting this up Catherine, and thanks to the 6 other ladies that signed up tonight - all who made the evening very speical.

Sweet Lab School

OK, a little bit more of reveling ourselves. My son goes to the Lab School of Creative Learning. There are only about 14-15 kids in each classrooms, and 7 classes total as of today (K-6). The school has been VERY receptive of my son's allergies, and they have done a marvelous job accommodating him and making us feel safe.

- Pre-entry meeting with principle, teachers, health aid, school nurse have all been positive.
- Allergy conditions and medications are taken seriously and completely accomodated.
- There is good relay of information, we're not in touch all the time but the staff have all been accessible and available whenever needed.
- In the one case where my son needed medication, I felt confident matters were handled the best it could have. (He must have touched a carpet where some other kids wiped their peanut butter hand or cheezy hand, and then touched his face which got itchy, red, with some teary eyes and a bit of swelling - taken care with Benadryl.)
- After this small incident, the school went beyond my expectation and decided to go Peanut Free on their own.
- They have created a allergen free table for my son on their own as well - I don't remember if I gave some or any input, might have made some suggestions, but the school have decided what would be best and have kept my son safe.

Just the other day, the school had a kick off celebration for a fund raising effort, and everyone was served a root-beer-float. For my son, they have prepared a soy-based ice-cream he could have. I didn't know anything till afterwards. I was proud of the school that they could handle things with confidence and include my son even with this food celebration.

Thank you, Lab School!! What a great support you are - You are my son's PAL!

"Depressed Parents and the Effects on Their Children"

Here is another article I found online "Depressed Parents and the Effects on Their Children."

If you feel hopeless, depressed at any point when caring for your child with special needs, don't fret. You're not alone, and things can get better with the right action.

I am certainly still working on re-establishing (or maybe for the first time) my relationship with my son who has food allergies. It has not been an easy balancing act learning about his chronic medical problem, while taking care of myself. Sometime ago, I have felt like he was depressed (at the age of 4) and his pediatrician pointed out to me that I probably needed to be treated first - and I am so glad that I got to do so. Finally after 7 years since his birth, I am glad to report that I am finally getting into that stage where balance seems more like an achievable spot rather than a dream.

This PsychCentral seems to have a lot or articles to offer - thanks for the time of internet - so much helpful information out there.

Forwarded Brown Rice Flour Bread Recipi

My neighbor who is sensitive to wheat has sent me this link of
"Finally, Really Good Sandwhich Bread (with Brown Rice Flour)"

Another neighbor has recently started baking bread and we've bought it from him a couple of times - it has been really good, but both me and my son, have started showing some symptoms: itchyness, tiny rashes, some coughing, more mucus in the airway etc - yes, but it's good to know that this is the extent of our wheat allergies. It is certainly not comfortable, I think my mood actually get affected as well, that I should avoid eating. Yet, it's so hard to resist when a fresh baked bread is sitting right in front of us... I guess the answer is really not to get those tempting products in our house (common sense, right!?)

I have heard somewhere sometime back that, sometimes, when we are sensitive to things, we might actually crave for it - as almost being dictated, sort of like cigarette, alchohol, drugs in a sense?? Not so sure, but this COULD be the case (I'm not saying it IS).

Back to baking, with some subsitute, I hope to try baking it. There has also been an issue of gluten free bread making on Living Without Magazine a while back, but I just haven't been able to get myself into kitchen to experiment! It's been on my want-to-do list, but cooking not being my favorite activity it's been hard. If anyone here wants to try cooking experiment with me, we have a commercial kitchen with a lot of space (not my personal one, belongs to the community), I'd love to host an event, so please let me know!

10 Health Tips in Japanese

I have a mug at home that lists Ten Tips to a Healthy Life in Japanese and wanted to share. The first letter “少-shou” means “less”, the third letter “多-ta” means more.

１．　少肉多菜: Less meat, more vegetables
２．　少塩多酢: Less salt, more vinegar
３．　少糖多果: Less sugar, more fruits
４．　少食多噛: Less eating (portion), more chewing
５．　少衣多浴: Less wearing (clothes), more bathing
６．　少言多行: Less words (speech), more action
７．　少欲多施: Less greed (wants), more giving
８．　少憂多眠: Less worries, more sleep
９．　少車多歩: Less cars, more walking
１０．少憤多笑: Less anger, more laughing

Number 5 might be something that needs a bit of explanation and is something that I should consider doing daily for my allergic/asthmatic son (as well as myself). The thought of training our skin, the largest organ of our body has been around for generations, especially for asthmatic kids. My grandfather (87 as of today) still gets up each day, takes off his shirts and rubs a hand towel all over his upper body. The idea is to stimulate the skin, get the circulation going through the tip of your skin, boost your immune system and become resistant to cold. Frequent bathing is probably similar idea. My interpretation is (which could be well wrong) to take quick cooler (if not cold) showers - similarly in an attempt to strengthen the skin. Have you seen monks for example, sitting under water falls in movies etc?

How lovely if I could practice all this daily!! Maybe I will make this my resolution… for next year;)

Happy New Year!

Happy New Year 2009! In eastern Asia, New Year is a HUGE thing.  In Japan where I grew up, families would gather up to cook for the 3 day celebration, make beautiful "Osechi" dishes all neatly stacked into boxes, so they could be eating mostly those for the next days without having to stand in the kitchen for long hours.  (I think nowadays though, the younger families including myself, don't quite know how to cook them and rather outsource - buy prepackaged Osechi dishes.)  Over here, we had a small potluck gathering, some made soup with (pounded sweet rice) in it, other friends brought some other yummies.   The great thing about Japanese food is, it's so much easier to avoid many allergens (other than fish and soy).  We had a great start into the new year.  If anyone would like to try out Mochi, please let me know :)  It makes a great and filling snack, the ingredients are only rice (sweet short grain) and water.

Wishing you all a good year with lots of laughter and blessings!

Two Book Recommendations

The two books I am listing here today are not books "about food allergies" - but they have certainly helped me understand my food allergic son very much. They would fall into the category of parenting with special needs.

1. "Raising Your Spirited Child - a guide for parents who childe is MORE intense, sensitive, perceptive, persistent, energetic" by Mary Sheedy Kurcinka

It talks about how children have their own temperament, has helped me learn to understand and accept my child with the temperament of his own, to view them as a blessing instead of something that I have to change, tame, fight with. I am not alone!
Me and my husband both bought one book each for ourselves, and also a workbook that comes with it. I think I am done with this book and would be happy to pass it on to the next person. So let me know if you'd like this book.

2. "When Love is Not Enough - A Guide to Parenting Children with RAD-Reactive Attachment Disorder" by Nancy L. Thomas

I found this book to be, unexpectedly, very helpful in understanding my own son psychologically. It has made me realize that, before his food allergies were diagnosed, how much pain he was inflicted upon - 24/7, wth no way out. I am not surprised if this sort of "emotional, physical, trauma" has had an impact on how he learns to relate to the world, including his mother. Also included is good tips on how to draw boundries and to protect "myself." It talks about how parents can be emotionally abused when the children they are raising have issues (Reactive Attachment Disorder in this book). In the book, I learned it was OK to fee the way I was (wondering if I understood and was connected to this child, for example), and was also given lots of hopeful tips. If you feel like you need someone to understand your struggle, this book puts a lot of those feelings into words.

Blessings to all of those who are working hard for the best days!!