Happy New Year- and food allergy management standards published

Happy New Year.

I hope that everyone has a good, safe and adventurous year. That's what I want. And I know with a kid going off to college the adventure is built in.

Note that FAAN has worked hard on standardizing food allergy diagnoses and “Guidelines for the Diagnosis and Management of Food Allergy in the United States” was published in the Journal of Allergy and Clinical Immunology. in early December. yay.

This means that in California or Michigan food allergies will be diagnosed and deal with in the same way. This might even mean more physicians will understand the management of food allergies and certainly this article will have an impact on how allergists outside the big food allergy hospitals will help their patients. I think it's great and a strong step forward for education.

Holiday cheer and frustration

It's two weeks before Christmas . You get an email about a special breakfast at school. you call the head of the cafeteria, and you ask what the ingredients will be in the potatoes. You silently say thank you because the hash browns are safe.

But on the morning of that special breakfast, you realize that no matter what you've done, or sent-- the bagel with sausage, the breakfast empanada, the chocolate chips-- it still is miserable for your son to sit and watch his classmates of 12 years be served waffles, omelettes, pancakes, sausage by their teachers, and he is not. He goes to the kitchen to ask for his plate-- and the head has forgotten, no blame here there's 50 kids and lots of other holiday requests, but still.

They say misery loves company, but I think our kids often suffer it alone, not wanting to share their frustrations with others or get upset in public. Not saying we don't get the call, but I wish there were a way to have them not be so isolated.

I always say, the worst it can be is terrible-- and that morning, I guess I was right.

So here's the new look of my website-- easier to comment and chat (aka-blog) and all is good. Hope you all like it!

Asking for ...favors?

For the first time in the 13 years we've been at one school, I have asked the head of the kitchen to prepare a meal for my kid. She's been willing in the past, but he hasn't. not safe, not fast enough and didn't want to be singled out.

but today I did.

It's breakfast-- which is the hardest meal for us to make anything special or portable. We usually bring Cheerios... a big fan-- and maybe order bacon or home fries if not in butter or on an eggy grill.

Thanks-giving

I gave lots of thanks this Thursday-- we had a lovely day, and I was thankful for another gathering of family and friends. i was thankful that my brother made a bunch of completely safe veggies-- so that I didn't have to, and that my gluten free stuffing turned out great without my having to bake bread.

I was thankful that my child is safe and well-- allergies are doable. And as we visit colleges I realize that not only are they doable-- he can manage them fine.

I was thankful that I am not in this alone, and that my many friends -- usually not in this city-- in this allergyworld are there for advice and comfort and support.

And, mostly, I am thankful that I can see the realities of this food allergy stuff, and am not overwhelmed by it (usually) or made angry by it. I want to live this life fully, and not be thinking "oh shucks this stinks" because in reality-- I'm living the dream-- and thank you Curtis Zimmerman!

FAAN Teen Summit

As usual-- wow-- Teen Summit was great. Lots of kids and parents sharing their ideas and anxieties and laughter. Mostly about the sharing, and the friendships-- I get to see a number of great friends only this once a year. We spend the time together and just hang out talking about our kids (no surprise) and watching the kids relax among friends. Everybody gets it!!!

and, it always reminds me that other families have it way harder than I do-- either more severe reactions, or school districts that are difficult, or they've just found out, or bullying-- really brings great perspective to my life.

exhausting, but so fun.

I learned that Bacon on a salad bar line is really SOY and flavorings.... who knew.

I learned lots of other things too-- about anxiety and distress and that peanuts don't aerosolize on airplanes (which have very good air circulation systems) and that keeping a kid home from a school trip isn't the best thing to do for protection. offer to go along, send food (obviously) and have the child advocate for self. isolation and withdrawal are not options!

college visiting

Hi there all you parents of college seniors... or juniors. I'm here to tell you that while it's not always pretty (I'm not getting out of the car, I don't like the look of the place) college visiting is not bad --allergy wise.

All colleges we have looked at have been accommodating--at least on paper-- about allergies. The cafeterias have been easy to negotiate and most have Vegan and Veggie and kosher areas that offer a variety of foods without eggs and dairy which is good. Most places I've seen also have a gluten free area including toasters-- so that's good too.

We recently had lunch in one of the college cafs --my son ate from his previously packed lunch-- college visits are no time for accidents! As we inspected, I saw that the staff used separate utensils for each dish served; there was little spill over-- at the hot service bins, the salad bar was a different story. and there were a number of options for my multiple food allergic son: kosher roasted chicken, white rice, plain burgers and fries, roasted "steak" and steamed vegetables-- choice actually.

The salad bar was OK, but the dressings were a little sloppy -- ingredients were listed for every meal, including the allergens, on easily visible cards. And the servers were more than happy to help me with ingredients and with labels.

It was a relief, but also the slamming knowledge again of how every day these allergies are a negotiation in life, a task, a risk.

I know that our kids are up to it, just wish they didn't have to be.

Routine and last post vanished--

Hi my last post vanished... just as I was publishing-- I was commenting that it's hard to get back into routine again, seems that lunch and dinner are just coming more quickly... I know I sound silly, but it's true. Last weekend had to do 2 dinner, 3 lunches and 2 breakfasts--for packable and nonperishable as there was a school trip and didn't think the pack was going in a refrigerator for most of the time. Chicken is good for that-- steak-- and LOTS of veggies--carrots, celery, olives, and lots of rice cakes too.

And it is hard to get back into the routine-- was summer just so carefree and laissez-faire? I guess so, food and bedtimes!

and I am searching for some hearty foods-- especially carbs-- that travel well and aren't too hard to pack or eat. my breads are pretty lame-- they never get browned and they are a bit spongey if not able to toast... there's rice and beans I do that a fair amount with a small thermos; and cereal plus rice cakes (ahh the proverbial rice cakes) . Need more-- and can't quite get the rhythm down of packing lunch that is different every day-- or at least varies..

more soon

how you feeling????

Not been writing for a while-- busy on my cookbook--THAT NO ONE WILL ACQUIRE. If anyone knows a publisher out there looking for a great everyday allergy cookbook-- let me know!

I've gotten some nice comments and mostly some notes on how the marketplace is too niche ... but this is a great product, and crosses the line away from allergy too-- since the food's family oriented and made with regular (read "non-health-food -store- only") ingredients.

oh well, will keep on getting out there to hawk it. :)

new products, new ideas

I've tried a few new products:
Mr. Krisper's rice crackers-- we use salt and pepper which can be a little spicy, but can't use the sour cream or bbq flavors-- but delicious and no gluten or wheat.
Vegetarian refried beans: Oy, I forget the company... will update later-- it's NOT Amy's since they use the same lines as other allergens.
Orgran Quick Bread mix-- easy easy easy and no eggs-- just water and margarine
Enjoy Life Bagels-- yummy . They're frozen, and they defrost well in a lunch pack (or an a plane ride!) and they warm up well. We don't have a toaster... don't ask... so wouldn't know about that, but really good. I know that Whole Foods carries them.

As for new ideas: Pasta primavera is a lovely summer dish esp in this heat. I use Tinkyada
Ok funny name, but delicious rice pasta-- cooks al dente, hold it's flavor and shape (use a healthy dose of salt) and is tasty. From an Italian, that's a rave.
I julienne carrotts, rough chop steamed broccolli(or asparagus) into small pieces, thin red or yellow pepper strips, chop garlic, julienne sweet onion, grape tomatoes halved (if you can have them) and frozen peas too. lots of chopped basil or parsely or both.
Drain the pasta, throw in all the veggies and about three tablespoons of olive oil for every pound of pasta, Toss, cover with a plate for a few minutes and then toss again and serve.
You want the tomatoes and onions to wilt, but not get too mushy. salt and a little fresh pepper good here too!
(I have been known to toss in julienne cooked chicken breast as well) We don't include cheese in our house, but a little grated pecorino romano would taste good on it as well.

cross country and a shout out

Well, off he goes-- to a program on the other coast, excited, ready, going to be doing some interesting thinking -- and eating I hope.

The school has residential clusters for whom there is a food service which automatically makes vegan and veggie entrees-- and he can ask for anything anytime to be cooked his way, and they already have his box of Cheerios in the office for his use only.... sounds great, so am hoping that it works that way.

And anyway, my kid's ready to make do if he has to-- program attracted him not for the food service!

but enough about separation anxiety! that's a story we all know --whether it's the first time they stay at a birthday party alone or their first overnight trip with school or their first camp summer. the reaction is always YIKES! how'd that happen so fast.

Shout Out: B.R. Guest restaurants In NY there are about five of them-- and one of the principals spoke at the FAAN conference about their kitchens' allergy procedures-- and it was really impressive without being over the top or condescending.

AND-- my thousand -foods-allergic son went for lunch and had the exact experience described at the conference--right down to the little "flag" toothpick that said "allergies" stuck in his hamburger. BRAVO!!!

will keep you posted (bad pun) on progress et al.

cruise was great

Cruise was great-- not only fun, but really a true vacation for me since I do not have to cook or even think about food (except on excursion days, and that's really easy too if you take a Ziploc bag or two)

there's salad all day-- which means lettuce and kidney beans and olives and celery-- and there's burgers and fries and taco chips too. and dinner was a plate of crudite --different every night mind you-- of broccoli, peppers, carrots, olives... then salad, soup and some delicious meat, like lamb chops or pork loin, and steamed veggies and potatoes! My kid ate like a king and I didn't have to lift a finger (except to bend an elbow!). verrry relaxing and SAFE SAFE SAFE,

He even got sorbet for dessert.

Now i'm starting to pack for summer program... sounds like a great group at this university-- they've been attentive and get it! ("oh we'll get separate Cheerios since won't do to have them in the tubes we use for other cereals...." that's getting it)

so wish me luck, hope I don't forget anything crucial... I'll make those lists and ship it out. (...Rawhide is echoing in my mind, gotta stop now)

food on a cruise

End of school and summer weather. going on a cruise where whole family can be carefree-- one chat with the head of dining and viola, meals are cooked to perfection with choices and carrotts cut into shapes!
also so many choices of kinds of food: always burgers( made on separate grills from cheeseburgers!) and chips and soda and Jello and hot food and salad salad salad--which can be carried up to the room for knoshing before dinner! hey I have a teenager-- always hungry.
PLUS he can get it all himself-- no fuss no muss no worries-- for seven days all the same strict standards of preparation and presentation--that is, the sunflower seeds stay in their own closed containers on the salad bar and the dressings are at a different table.
that's a vacation! (Use Holland America cruise line, which on a trip to Alaska had the chef come chat with my son to see what/how his food --on a train!!!-- could be handled--also great medical services, should we ever need them) happy trails.

Packable, Easy to Find Individual Items

I'm going to list :

Minute Rice "ready to Serve" rice (2 pack; microwaveable)

Motts Applesauces

Jello cups

Raisins

Cranberry (in raisin like packages)

Enjoy Life cookie packs (2 little cookies each, but eminently packable for lunch)

Cereals in a cup: Cheerios, Lucky Charms, Fruit Loops-- many 7-11s have them (convenience store in NE)

Instant cereals: Oatmeal and Grits-- makes for a great snack and most hotels have coffee pots that one can use for making hot water

Baby Food in jars-- don't laugh, they are terrific for older kids as well-- lots of nutrients and easy to carry around

Rice Dream in individual "juice" boxes-- protein in a box, plus a drink

Rice cakes

Enjoy Life Protein bars

Oh-- and I recently went "shopping" at a chain drugstore that has some food items: We can't eat yogurt, but they had, in their refrigerator section:

• fresh salads in containers
• individual containers for cut up vegetables
• containers of cold Jello cubes
• deli meats in packages

I did very nicely!

School Trip preparations

yup-- my kid's off to Shelter Island for some rest and relaxation in the form of kayaking and hiking and cleaning up a camp for summer use--Class Trip!

These juniors could use the time off, but the kitchen--although extremely cooperative--cannot feed my son, so I am sitting here thinking of what I can make and pack and put into ZipLocs and label--stuff that won't taste gross after two days, and stuff that at least approximates dinner and lunch. They'll all be too sleepy to care at breakfast.

So I figure lunch on the bus is easy; then steak strips with some sort of cooked veggie and those individual RICE CUPS by Minute Rice--BTW Delicious and EASY and PACKABLE!!

Protein bars (Enjoy Life-- although more like dessert than protein bar) rice cakes, fruit leathers, individual applesauces (thank you Motts)

and .... ask me tomorrow when I finish cooking.

headlines!!!!

headline on the front page of the NewYork Times yesterday(5/12)--
"Doubt Cast of Many Reports of Food Allergies"
I'm REALLY frustrated.
In that one headline, years of hard work getting people to believe that food allergies exist--Zip-- out the door.
No matter that the article says the doubt is cast on SELF-REPORTS, not diagnoses. Nope, most people glancing at the paper will say: "see, all those people complaining about peanuts are really just overreacting, like I thought..."
even though:

• Not one researcher connected with any of the major food allergy medical institutes: Jaffe Center in New York, Duke University, Johns Hopkins... was quoted or even spoken to
• title of original JAMA piece was called "Diagnosing and Managing Common Food Allergies"
• Recent study from PEDIATRICS citing increase in food allergies was never mentioned
• CDC studies which demonstrate statistically signifigant increases in food allergies in children never cited

oh so frustrating!!!

the FAAN conference in Tarrytown was great-- so many people who GET IT and great people to meet and exchange stories with. Didn't hurt that my 17 yr old rocked the place with his presentation on how to eat out at restaurants--even with his laundry list of allergens.

Met people who make the walks happen, support group leaders, funny parents and scared parents, all sorts of folk who want to make this work.

heard about Daiya "cheese" a vegan product which actually melts!

felt great being among friends and community and all the amazing people from FAAN--you know who you are.

look for more on : small packable prepackeaged foods... question I got and wasn't on the top of my game to answer.

FAI(Food Allergy Initiative) food allergy luncheon last week was phenomenal-- lots of money raised and real hope offered for lowering risk of anaphylaxis and food allergies in general. Some items are already in FDA human trials (phase 2 clinical)

So wow --lots of energy and wonderful people to meet-- movers and shakers from the midwest who are getting Epis on the ambulances there. The HUGE Ming Tsai poster-- to be put in restaurant kitchens etc-- so at least servers and restaurant workers will have heard of food allergies!!!

so much great stuff.

This weekend is the FAAN conference in NY area-- again, lots of community and good resources and information abound. More later.

S t r e s s

I realized recently that it is stressful to have a food allergic child. Now, don’t think me naive, I have known this all along as I pack up food to send to our vacation destination. Or wonder if the class trip will provide refrigeration or whether the new packaging of some item means the recipe has changed.

But I am not the type of person who admits stress easily. Nor am I the type of person to catalog my woes to other people. I blindly go where no man has gone before.

Except there are a lot of people out there who have “gone before.” There are others who are in the same situation, who can give you support and vice versa. Maybe it’s an occasional phone call with a new suggestion for packable lunch. Or a friend who notes she’s heard a particular product is good (thank you Rebecca!).

I will never forget when my son was first diagnosed with food allergies and I was in a state. I was probably in many states: denial, shock, panic, Ohio (just kidding). But I will never forget one friend’s advice. She told me: Make a list of the foods you CAN eat. This advice was golden.

Starting off with a positive plan makes everything else flow more easily. Of course I knew what our family had to avoid, but what could we enjoy? Shifting the focus –widening it really—allows the bigger picture to become clear. I think that stress happens, for me at least, when the focus narrows and all I can see is the one droopy flower and not the whole bouquet.

Back then, after I got off the phone with my friend, I picked up a pen to make the “CAN EAT” list. I immediately felt better: More in control. More able to make everything work. More able to smile. Our list grew from baked chicken and rice to a full-size cookbook of Italian favorites!

That’s not to say that I don’t still freak out sometimes. I do. I still stand in front of the refrigerator, feeling dazed, thinking “now what?” I still get anxious when a school trip looms or a favorite product is taken off the market. Stress happens everywhere, and especially around food allergy where the stakes are so high—even forgetting safety, there’s everyday nourishment, new situations, and the everyday challenges of going out with friends..

So I repeat: It is stressful to have a food allergic child. And I vow I will try to practice what I preach: I will ask for help. I will reach out to others—friends, food allergic pals, brothers and sisters.

Shift your focus. Widen your vision. Open up and let in someone else’s advice and experience.

been a while--on vacation and took a break. am now refreshed and promising myself to be more timely. Have had my preliminary conversation--via email-- with the summer program my son is attending. far far away--the other coast! and while I feel light years more confident than last year this time, I do need to have the real life conversation and see a menu or two before I'm satisfied.

And I need to have the conversation with my son about -- might be broiled chicken and cold cuts with dull salad for three weeks, but them's the breaks!

I think he'll be OK--just as long as he's not hungry. ugh that's what's getting me.

I have sent my friends an email asking for their ideas, comfort, anti-anxiety strataegies and general good wishes for me at the moment, and hopefully most of them will laugh--they do know my stress levels can go through the roof! and help me out.

Any ideas, or suggestions or comfort from my friends in the ethernet will be greatly appreciated as well! :)

There has been so much happening in the food allergy world that I see. possible peanut vaccine; possible connection to what mothers eat in the last trimester effects how allergy prone (and Asthma prone) a child is. Somehow, I feel like--always blame the mom. I am not convinced by the evidence as yet on these studies, and I wish they weren't reported until replicated. That's a lot of guilt for some --I can't even begin to feel guilty since no one knew that there might be a remote possibility of a baby's developing allergies dependent on what the mother ate.

And these studies make connections that seem too direct for the evidence the studies have uncovered. Can one really say, don't eat peanuts and your child won't be allergic? seems almost like science fiction. Like the direction it's all going in, this research, but feel the conclusions are premature.

Other than that, New York is experiencing a bit of summer--which was lovely.

Notes: LOVE the gluten, egg, dairy, nut, and sesame free bagels that ENJOY LIFE makes. They are tasty and stand up when heated (don;t have a toaster so don;t know about that)

and other winners: the Enjoy Life granola-type cereal-- nice warmed up with Rice Dream.

Still looking for good bread that is free of the Big Eight-- any ideas?

Been away from the blogpost for a while-- been down for the count with the usual winter ills-- better now, but still not at the top of my game. What I mean is--don't expect too much!

So the summer program search is in full swing. far flung as well-- from East coast to West-- and I want my son to go for it-- why not. Soon enough be on his own, and this will be good practice. Worked well last summer and although I was a nervous nellie-- it all worked fine.

Looking forward to adding some links to the website and also being linked to some other sites-- take a look at mallergies.com out of Canada. Interesting friendly site that has recipes and lots of other information--esp for the newly diagnosed.

had the funny experience of re-living the words of my home-ed teacher (yes home ec... from a bygone era--I know and I'm not even that old!)

she was always saying that humidity and altitude have a lot to do with making a cake--well she was right. In the midst of a raging snow storm last week, my cakes did not rise as they usually do--hmmgjf and it was birthday cake too!

soon.....

Friday before a supposed big snow in NY--we'll see! I wouldn't mind a blizzard, so relaxing , no responsibilities, no worries, just cook and watch a movie and go throw snowballs.

I have tried a new product-- the company graciously sent me some items-- Mixes from the Heartland. www.mixesfromtheheartland.net They are Gluten Free / Wheat Free for celiacs. Unfortunately some of the items I couldn't try-- too many eggs to substitute or packaged cream of celery soup with milk in it already. But what I did try was:

Italian Bean soup mix: good, a bit strong on the herbs--I think oregano and possibly tarragon-- but it was hearty and made a nice side dish over pasta.

Italian Veggie Dip: Well we can't make dip (no milk or soy products) at our house, but I mixed the packet with about a cup of water and poured it over chicken pieces and baked. YUM it was great! very tasty over the chicken and made a nice little sauce as it mixed with the chicken juices.

Microwave Brownie Mix: As I've said, I'm not a good baker. I mixed up the ingredients and made any egg substitutions--which was one egg I believe. I microwaved, and well, I got gooey delicious fudgey stuff. Not brownie at all, not really liquid, but a gooey goodness that I let harden a bit and then scooped into bowls to serve. Good tasting, just the form of the cooked mix did not --literally-- gel. We enjoyed, but maybe I did something wrong with the microwave... don't know.

I have others to try, and I'll let you know. For those of you out there without milk or egg allergies, these are nicely proportioned and interesting mixes made in a gluten, barely, egg, oat, peanut, rye, soy free facility.

Interesting ... last night my husband had a reaction to a LIME Freezie. You know those little slush sticks you put in the freezer to harden up. I think the brand is Flaovr Ice.

For years we avoided Lime Jell-O because my son said it made his throat itch--although chips with lime in them or even lime in a selzer didn't bother him

Now I'm thinking that LIME flavoring --or whatever makes it green--is the problem. I wonder what it is.

So now I have thrown away all the LIME anythings, and will continue with the NO-Lime flavored items .

Well my Polenta was a smashing B O R E. I certainly can make porridge--Italian or not--that;'s what it was like. Good texture just dull as, well, dirt!

So I think I have to sautee some onions first then mix it in-- or bacon-- or something. I made the whitest meal tonight-- roast chicken (OK skin looked good) stewed cabbage with onions, polenta --which looks like white if with everything else!

oh well, back to the proverbial drawing board.

I did make some great bread today though--Orgran Simple Bread Mix. Water and oil and that's it for ingredients (i use guar gum also to help it stick together). It's rice flour and tapioca and --I threw the box away-- but no corn and obviously no wheat or gluten.

nothing to eat

I can't think of one thing to make for lunch... and a debate weekend coming up--have no clue: chicken breast; steak--fruit leathers.... but then what? a bag of mini rice cakes, rice cakes, apples...ugh I am stumped, probably because just off vacation where the kitchen was my domain and not much had to be carted around and because I, well, just relaxed and served chips with brownies the whole time.

bad mom-- nothing interesting, nothing out there to make, applesauce, cookies, lettuce--I can hear the "again" and it's true--again!

Nutritionist visit well super well-- not enough grains, but on the whole very healthy strong diet. glad to hear it out loud. and got a calcium /D supplement (powedered, Kirkman labs--hypoallergenic) . more grains... tough one for a baking challenged mom-- off to Whole Food tomorrow to find bread mix--or Fairway-- to find bread mix and other Enjoy Life products--bagels, granola(!) and the like--something to spice it up!

Trix cereal, Rice Chex(health valley) and some other things to mix it all up and serve like a grain product... more grains--got polenta too--but not exactly easy to put in a lunch pack!

off to try again, wish me luck!

Happy New Year everyone-- I imagine a great year with lots of new adventures and fun awaiting me and my family. And--let's make a difference this year.

Ours was a lovely New Year's Eve--our house, friends, fun, food and fireworks courtesy of NYC. Very very nice. made my chicken drummys recipe--and hike up the heat to 400 degrees for that first 30 minutes! I will change on recipes, but really need to get it higher faster.

Thinking about the new year and trying to establish the parameters of what makes quality of life so different for food-allergic people: lack of control over environment (as much as we try) loss of choice, ineffability of the allergy--that absolute hard and fastness of the allergy as it stretches across time and into every space...

Well, that wasn't exactly uplifting! enough for now--out into the almost snowy very cold day.