Milk Doesn't Do the Body Good

New Site for Allergies

2010-09-07T16:30:00.000-07:00

www.AllerMates.com
I just went there today & ordered THIS for Flynn. It wasn't cheap ($11 plus shipping), so I will probably wait & give to her for her Bday.
I'd been toying around w/ ordering her one. Mostly seemed beneficial in case she were to have a reaction, pass out, then be found by someone who might not know of her severe allergy.
Used code BUTTERFLY for a 10% discount.

Check Labels on Medicines & Lip Care

2009-01-07T15:20:00.000-08:00

A month or so ago, after a 10-day stint with diarrhea, I called my daughter's pediatrician. The phone nurse recommended culturell. So, as an obedient parent, I go right then to Walgreens & get the culturell.

I get home, open the capsul & sprinkle the powder onto a banana. I start to feed it to my girl (who had started to take a bite) when it dawned on me to double-check the label. I made my girl stop & my eyes went right to whey.

I did a major finger sweep. And my husband & I proceeded to squirt water in her mouth while she spit it out into the toilet.

Gees.

Then, after a week of laryngitis & unexplainable bumps around her mouth, I finally thought to look at the chapstick that my daughter had been sparingly smearing on her mouth for that time period. About 1/2 way down on the list of ingredients is HYDROLYZED MILK PROTEIN. So I have basically been smearing milk on my girl -- who is EXTREMELY allergic to milk. Great. Thanks Avon. Wonder if they would reimburse my co-pay to the pediatrician Monday... because I was so concerned about her lack of voice.

The Part Where I Want to Kick Someone in the Throat

2008-05-29T11:22:00.000-07:00

Yes, it's that part of my day...

on account of reading some of the comments posted here. In response to our MLB stadium making a decision to open a peanut free section (ONE section) at one of the games this season (ONE game), they opened the question up to some the fine (using the term loosely) readers on their site.

Some people still think that parents of allergy kids are overreacting & blowing things out of proportion.
I wish those people had been around the evening last summer when Flynn's airway closed. And then I could've jammed the giant needle of the epi-pen into their leg as well.

As I read, I thought to myself, 'Really? Are there really people that ignorant? Really?'

And then I commented. And so did Jeff. And I wanted to kick someone in the throat.

Saturday Fun!

2008-05-16T05:12:00.000-07:00

Food Allergy Fair w/ Kyle Dine
Saturday May 17, 2008
9:00 am - 12:00 pm
Location: Kirkwood Community Center
Street: 111 South Geyer Rd.
City State Zip: Kirkwood, MO 63122

Notes:Mark your calendars! A FREE children’s concert and Food Allergy Fair hosted by Gateway FEAST (Food allergy, Eczema and Asthma Support Team) and AAFA (Asthma and Allergy Foundation of America-St. Louis Chapter) will take place Saturday, May 17th from 9 am to Noon, at the Kirkwood Community Center. Kyle Dine is an anaphylactic musician on a mission to promote food allergy awareness across the globe. His upbeat and catchy music delivers many important messages encouraging children to learn about food allergies in a fun way! To learn more about Kyle Dine visit his website at www.kyledine. com .There will also be samples of foods from manufacturers of various special “allergen-free” products, information, coupons, experts and product vendors who cater to those affected by food allergies, asthma and/or eczema-and many door prizes! All for FREE and open to the public!

Early registration is recommended by calling 314.645.2422 or e-mail FEAST@aafastl. org. Please join us!

A Day in the Life of an Allergy Mom

2008-05-13T09:56:00.000-07:00

It would take me forever to write every single moment or meticulous thing I have to do to ensure Flynn's safety. But here are some of the things I can remember (as I'm barely able to stay awake right now):

6:30 am Flynn wakes me. I know lots of moms who brag that their kiddos don't wake them or they can wave them off to the other room to play or watch tv. But not an option for us. She could help herself (not likely, but still) to something to eat or drink that could be deadly for her. Or if something was left out the night before, or by Jeff in haste for his early departure. So, I'm up with her. She immediately asks for a drink. I go ahead & pour Bub's cup too since I like to group task & Mondays are a bit rushed. I have a method of unscrewing his cup, but leaving the lid on til the last moment...I then hold his lid in one hand as I fill it up w/ the other. That eliminates the chance that his lid will leave a residue on the sink. Which could be deadly to her (you'll see that phrase a few times)

7:30 am I put her breakfast out. We have this down pat, but I can't just give her any ol' thing. It has to be what we've bought ahead knowing it's safe. I gave her a banana & a roll.

8:30 am Papa gets here. I show him which cup is hers as she takes one final drink & puts it away. I also remind him that she'll be dropped off after dance by our good friend (the only one trusted so far w/ such a task) today.

8:45 am Load her up in the car. She asks to sit in Gabe's carseat which is in the middle. I usually say no becuz I'm scared the straps / upholstry could have something unsafe (dried milk ingredient something) on them. I say yes this time. For whatever reason.

9 am Drop Flynn off. Kiss her, but not directly on the lips. I don't think I've eaten anything unsafe, but it's just not good practice (besides, major germ-spreading). Touch base w/ good friend & double check that she's dropping Flynn off. I scan girls' faces as I walk out of the studio to see if anyone has obvious signs of dirty mouths / breakfast debris...

Five minutes later. Pray the whole way to my meeting that Flynn stays safe. Will a buddy hold her hand in dance class who maybe ate a chocolate donut on the way to dance? Will someone have a milk mustache & kiss her on the cheek?

10 am (in my meeting) The phone rings. It's Papa. He was a bit worried, Flynn got dropped off w/ a package of the McD's apple slices (sans caramel dip) & he's not sure they're safe. They are. And our good friends know this (she asked ahead of time) but I failed to communicate that to Papa. And am glad he double-checks everything.

11 am Read an email about a little boy who died from a peanut allergy. Say another prayer for Flynn that she'll be safe when she's out of my care.

11:30 am Leaving meeting to go to Shop N Save to get soy dream ice cream. Flynn's preschool is having a beach day & they're (for whatever reason) serving ice cream as the snack. So, I must bring an alternative unless I want her left out again. They don't carry the i.c.sandwiches anymore. I sadly pick up a $5 pint of plain chocolate. Knowing I'll have to make them.

12 pm Get home. Scrub my hands. Non challantly comb over her face when I see her. It's just habit now. I don't even mean to do it. So many times tho I've discovered welts/bumps/reactions from the outside 'world'.

12:30 pm Bribe her w/ "Just one more bite & we'll make cookies." We make the cookies. Then I smear dabs of ice cream on each & sandwich to freeze.

1 pm Make a mental note that I need to send a package of wet wipes w/ her for the kids to wipe their hands off after their ice cream. One drip could be deadly.

1:30 pm Try to convince Flynn that a nap would be really fun. And then I could get some stuff done.

4 pm Panic thinking about how I let Flynn talk me into her staying ALL DAY at preschool tomorrow. And what will she take for lunch??

6 pm Dino Nuggets, peas, & fries for supper. Daddy & I have pizza becuz he did a fundraiser & we ordered some. She gets close to me while I'm eating & I snap at her that she should know better than to get close to me when I'm eating something 'unsafe'. Then I think about how she's 4.5 yrs old & how many other kids her age have such responsibility. Wash hands & mouth.

8 pm I'm working out & hear someone bashing McDonalds. I hate it too but defend it as it's one place we know she has a few safe options.

9 pm Get back from working out. Go to her bed where she's sleeping & kneel down. Say a long prayer that God will protect her like He always does. Please Lord, keep her wise & sound, bring to her rememberance all the careful procedures we've taught her. Give her teachers quickness & concentration w/ her allergy. Keep her from harm.

9:15 pm Laugh at the uncrustables Jeff tried to make. He blames his difficulties on the bread because it's "so soft". Talk to Jeff about how I can keep her ic sandwiches froz during the 30-minute ride. Pack the mother of all lunches. Daddy's sandwich (5th try). Pickle spears. Apple sauce. 2 cookies. I cut wheat tortilla into strips & Jeff laughed & asked what she was supposed to do w/ that. I just didn't want her to be hungry. So I sprinkled it w/ cinnamon. Frozen Capri Sun. I wrote I LOVE YOU on the container. I made sure I packed a paper plate & napkin. I got scared thinking about lunch time tomorrow.

10 pm Read email. Allergy fair coming this weekend. Excited about seeing new stuff to make our lives easier. This is one of the easier days. Scary days are days w/ birthday parties & family dinners. Or going places like chuck e cheese's or someone's house.
There are a million things I do everyday w/o even realizing it, that I did not document because it's just 2nd nature to me from doing them for over 4 years.

I always have to give God thanks for blessing Jeff & I with our abilities to keep Flynn's environment safe. I've only messed up a couple of times. And that's only because of God's protection.

McDonalds Owner Follows Up

2008-03-29T05:35:00.000-07:00

Jerry Flagg, owner of this McDonalds, called me yesterday.
He apologized (like that's worth anything) & said there is not currently such a sign (No Food Allowed in Structure). He said that because McDs is a franchise, that for him to put up such a sign, would require permission from a corporate person. And that he would "look into it."

I brought up the point that with there being so many allergies right now, it's a lawsuit waiting to happen.

And while I don't plan to sue (gee, if I wanted to, I could have sued Archway Foods last summer for mislabeling their cookies & Flynn nearly dying), not everyone shares my beliefs, and many people are just waiting for the chance.

I agree that I could just ask a parent (allowing their child to go into the structure with ~~death~~food) to please oblige, it would be much easier with such a rule, that I could refer to as a reinforcement. (imagine me asking said parent to not let their ranch-dressing-dripping child carry his dressing-dripping nugget into the tunnel...then imagine me pointing to said sign).
And I told Jerry this.

He again apologized, said he doesn't want me to discontinue our playdates at the playplace (bet you don't Jer, we drop $10 everytime we come, along w/ whomever we meet there!).

For whatever that's worth!!!!!!

McDonalds Once Again Disappoints

2008-03-27T05:06:00.000-07:00

I just submitted this to the comments of McDonald's website:

I'm in the process of writing a letter to someone in the corporate office but wanted to quickly give some feedback about this topic,
My daughter has a severe milk allergy, and while I rarely voice concerns over this (having a belief that we should just absorb our concerns, or maybe not eat out), I felt this is a concern for all parents (esp parents of allergic children).
I'd never eaten at this particular playplace. But 2 weeks ago, we were invited & we obliged. After an uneventful visit, we returned last week and then again yesterday.
I was shocked to see a child (approx 18 mos) toddling toward the climbing structure, about to climb in, holding a chicken nugget, with ranch dressing dripping off. He was in the most easily seen part of the playplace, right in front of the entrance, in plain sight of the counter (employees). He walked around for quite a while with the food. I'm certain that anyone watching from the counter could have seen.
While it is my prerogative to approach that parent & ask that she take it from the child, and wipe his hand before he enters the structure, I really don't feel I should have to be a rule implementer; considering I don't own/run the restaurant.
Are there rules about the children entering the structure with food or while eating? Are these rules posted?
As a parent of a child who has an anaphylaxis allergy, who will have a reaction upon mere contact with a milk-based ingredient, I'm scared enough to never return.
But as a parent of another child who isn't allergic, I am appalled that there could be food/food particles in parts of that structure that are unseen to parents.
I am confident that with a corporation the size of McDonald’s, with allergy awareness, there is surely such a rule. And perhaps at this particular location, the rule is just not being enforced.
As previously stated, I am in the process of creating a letter & hope to hear back from someone regarding my concern.
Thank you.

O's, not X's

2008-02-12T05:13:00.000-08:00

Are you a Careful Kisser?

How to Smooch Safely with Food Allergies This Valentine's Day

DOYLESTOWN, Pa., Feb. 11 (AScribe Newswire) --

For most parents ofteens, Valentine's Day may evoke over-protective thoughts regarding their child. "I've got two daughters and I think they should never kiss anyone!"exclaimed Roger Friedman, MD, Clinical Professor of Allergy, Immunology, andPediatrics at Nationwide Children's Hospital in Columbus, Ohio.

All joking aside, parents of food-allergic children have even more cause to be wary of smooching. Today, 3 to 4 million children are affected by food allergies, and allergic reactions can be triggered not just byconsuming food firsthand. Kissing - ranging from passionate to a peck on the cheek - can also prompt a reaction.

"You're pretty unlikely to have anything severe happen from a kiss. But it can happen and you need to be smart," Dr. Friedman advised.
A common form of affection on Valentine's Day, kissing becomes a problem when a grandparent or date consumes an allergen before smooching afood-allergic child or teen.

"A peck on the cheek from a parent or relative will almost always only result in a local reaction such as a welt or hive; it's very unlikely to cause any severe reaction that you'd be worried about," Dr. Friedman explained.

Short of suggesting kissing be prohibited this Valentine's Day, Dr.Friedman recommends teenagers, especially, play it safe. "If you're in a committed relationship that involves passionate kissing, tell your date 'I'm allergic to nuts, please don't eat any before you kiss my face!'" he suggested.

Todd D. Green, MD, Assistant Professor of Pediatric Allergy and Immunology at Children's Hospital of Pittsburgh, agreed.

"If a date cares enough about their Valentine to kiss her or him, hopefully they'll care enough to refrain from eating the food theirValentine is allergic to that day," he said.

Kissing (and even sharing utensils, straws and cups) causes exposure to food allergens through saliva, which can contain enough allergen to cause local and systemic allergic reactions. In a study published in the Journal of Allergy and Clinical Immunology, participants ingested two tablespoons of peanut butter to establish how long the peanut allergen stays in saliva. Researchers collected the saliva of the participants at different times, and also evaluated mouth-cleansing techniques (brushing teeth, rinsing and chewing gum).

According to the study, "the most effective way to avoid causing an allergic reaction, if you're going to eat the food to which your partner is allergic, is to eat the food several hours before a kiss and have a mealf ree of the allergen before you kiss - although not eating the food at all would always be the safest approach," said Dr. Green. Though the risk of having a severe allergic reaction from a kiss is small, there is always a slight possibility, said Dr. Green. "Unfortunately you can't predict the amount of protein that will be transferred during kissing, and it is difficult to predict the reaction," he said. That said, it is better to err on the safe side.

Online support group Kids With Food Allergies offers these tips for safe smooching on Valentine's Day:
- Remind your kissing partner about your allergies;
- Suggest your partner avoid eating serious allergens, if possible;
- Ask your partner to minimize allergen exposure, such as by washinghands and face, or brushing teeth thoroughly, before kissing;
- Carry appropriate medication and know how to use an injectableepinephrine kit;
- Wear emergency medical identification (such as a MedicAlertbracelet).

For more tips on staying safe this Valentine's Day, visit http://www.kidswithfoodallergies.org .

Our little Flynn's milk allergy is very much like a peanut allergy in that she's so sensitive to contact (& she even has had an airborn reaction a time or two).
Even to a kiss from Papa on the cheek, after he's drank coffee w/ cream in it. Or once when daddy ate ice cream & only 'rinsed' his hands (didn't use soap) -- everywhere daddy touched Flynn, there were burn-like marks.
If you ever want to show our girl affection, first we suggest you just give her a hug; but if you feel compelled to kiss her on the cheek, please wash your hands & face after eating the unsafe food.
Her little cheeks appreciate it!

Snow Cream

2008-02-01T10:18:00.000-08:00

Snow Ice Cream II (SUBMITTED BY: Mylessa part of GATEWAY FEast Allergy Group)

PREP TIME 20 Min

READY IN 20 Min

SERVINGS & SCALING Original recipe yield: 8 servings

INGREDIENTS
1 gallon snow
1 cup white sugar
1 tablespoon vanilla extract
2 cups milk (or milk alternative)

DIRECTIONS
When it starts to snow, place a large, clean bowl outside to collect the flakes. When full, stir in sugar and vanilla to taste, then stir in just enough milk for the desired consistency. Serve at once.

Lee's - thumbs up (a slow thumb, but a thumb nonetheless)

2008-01-31T16:59:00.000-08:00

This one took a while, I had to go through his wife/assistant, a few times, then didn't hear from him for almost a month, etc.
But it sounds like he's busy & at least he's bothered.

Again, below, find our emails back & forth.

Amy –
Please find attached the information you requested. Please let me know if you require any additional info.
I apologize for taking so long, but I am a one man department for Purchasing, Research & Development as well as Quality Assurance, so I’m a little swamped. If I can be of further assistance, do not hesitate to e-mail or call me (850-534-0913).
Thank you.
Don

From: allergy mom
Sent: Saturday, September 08, 2007 3:22 PM
To: Don Kupski
Subject: Re: Allergy Information

Hi Don,
Just waiting for that info.
Thank you!
allergy mom

Kupski wrote:
Amy –
I have been the one working on determining the presence of potential allergic ingredients in our food products. I am waiting for one last supplier, our largest, to send in their information. I am expecting it later this week, but unfortunately I will be out of town the rest of the week. I will do my best to get back to you early next. Should you have any questions, please feel to contact me at your convenience. My contact info is below.
Thank you.

Don

Don Kupski
VP Purchasing/R&D
Lee’s Famous Recipes, Inc.
25 Central Square Suite B-2
PO Box 4808
Santa Rosa Beach , FL 32459
850-534-0913 (office)
850-534-0917 (fax)
513-293-2889 (cell)

Menu Item
With Ingredients of concern below each menu item
Famous Recipe Chicken
Wheat, soy lecithin, egg whites
Crispy Plus Chicken
Wheat, soy lecithin, egg whites
Roast Chicken
Wheat
Jumbo Breast Strips
Wheat, soy lecithin, egg whites
Jumbo Boneless Wings
Wheat, soy lecithin, egg whites
Corn on the Cob
None (liquid margarine is only “ingredient”)
Rice
Natural butter flavor
Red Beans & Rice
Wheat gluten, soy protein
Potato Wedges
Sodium caseinate, buttermilk solids, powdered cream
Natural Applesauce
None
Brown Gravy
Sodium caseinate, Lactose, lactic acid, natural cream flavor
Green Beans
Soy
BBQ Sauce
Caramel color, soy derivatives
Coleslaw
Eggs
Potato Salad
Egg, caramel
Buffalo Sauce
Milk products, caramel, nonfat dry milk, whey protein concentrate
Biscuits
Buttermilk, buttermilk flavor, buttermilk powder
Mashed Potatoes
Milk proteins (whey and caseinates) and lactose
Ranch Sauce
Buttermilk powder, buttermilk flavor, lactic acid
Spicy Pepper Sauce, Honey Mustard Sauce, Sweet & Sour Sauce, Mustard, Mayo, grape jelly, strawberry jelly, honey, hot sauce packets, lemon juice
None

Amy,Thank you for forwarding the link. I will send it to Don right awayand print it myself so that we can start looking at some of the mostobvious products. Don told me he has ingredient sheets on most of ourproducts and what he doesn't have, he will get from our vendors. Wewill get back to you as soon as possible. Thank you also for your kind comments. Our family has been in thechicken business since 1972 and we strive to provide a quality productat a reasonable price to our guests. We feel this includes letting ourguests know nutritional values and now we can maybe add ingredientlisting thanks to your request. KimKim Griffith, SecretaryFRFC Springfield, Inc. - dba Lee's Famous Recipe Chickenph: 937-845-2142 ext 5 - fax: 937-845-1705

Date:
Wed, 18 Jul 2007 15:04:00 -0400
From:
"Kim Griffith"
To:
allergy momma
CC:
"Kim Griffith" , "Scott Griffith"
Subject:
Re: allergy info

Dear Amy,
Thanks for contacting us regarding your daughter's allergies. As a
mother of two boys (now grown and on their own) I can only imagine what
you must go through to make sure she doesn't consume anything harmful.
I am forwarding your request on to our research and development person
at Lee's corporate. He is the one who did the nutritional chart and
I'm hoping that he can help us out on this request. If you could send me a
list of the 50, I would be happy to look at individual packaging
labels, but I am concerned that if the ingredient is less than a certain
percentage, it does not have to be listed. These are questions that I
hope to get answers for. I will be back in contact with you as soon as
I get a reply back from him, but in the meantime, you can let me know
50 items and I can do a visiual check of our labels.
Thank you for your interest in Lee's Famous Recipe Chicken.

Kim Griffith, Secretary
FRFC Springfield, Inc. - dba Lee's Famous Recipe Chicken
ph: 937-845-2142 ext 5 - fax: 937-845-1705

>>> allergy parents' email address> 07/17/07 05:05PM >>>
My daughter has a severe allergy to the protein found in milk-based
ingredients...there are approx 50 of them, none of which we expect
anyone else to know.
Before we visit a restaurant, we normally check the ingredients
online to see what she can have; however, your website does not list
the
ingredients, only the nutritional facts.

Is that something that could be mailed to us?:

[our info]

Lion's Choice - BIG thumbs down

2008-01-31T16:54:00.000-08:00

I will copy/paste my email from/to Lion's Choice.

BIG thumbs down & altho it's a favorite of Jeff's, we haven't been back since seeing their lack of care. Basically, they don't give a rip whether or not we return.

Mr. Tobias - NO, that doesn't help. Not at all. Thanks for nothing.

Dear Ms. allergy mom,

We do not publish our ingredients for a few reasons, but I can tell you that our roast beef sandwich and fries do not have milk as an ingredient. But I can't tell you that trace amounts of a specific protein are not present. The reason we don't publish our ingredients is because although we have very strict specifications for the foods we sell, sometimes the food distributor substitutes items without our knowledge, and because some of our products are prepared in facilities that may prepare other products, and some cross-inclusion could occur. If someone has a mild allergy, I have no problem indicating which products are safe and which ones to avoid. But in the case of a sever allergy, I can't guarantee that trace amounts of allergens are not present.

I hope this is of some help.

Sincerely,
Jim Tobias
PresidentLion's Choice Restaurant Corp.
12015 Manchester Road, Suite 118
St. Louis, Missouri 63131
314.821.8665
314.822.7144 FAX

-----Original Message-----
From: the allergy parents
Sent: Tuesday, July 17, 2007 4:13 PM

To: jtobias@lionschoice.com
Subject:
My daughter has a severe allergy to the protein found in milk-based ingredients...there are approx 50 of them, none of which we expect anyone else to know.
Before we visit a restaurant, we normally check the ingredients online to see what she can have; however, your website does not list the ingredients, only the nutritional facts.

We have visited twice in the last month, each time requesting ingredient info from the management, but no one could give that to us.

Is that something that could be mailed to us?:

AMY ****
*************
**** MO 63****
636.********
Thank you!

Restaurants

2008-01-31T16:50:00.000-08:00

Over the summer, the kids participated in a library summer reading program. For every 16 hours of reading, they got prizes.
They ended up getting a few coupons, for local restaurants.
All the restaurants happened to be ones we'd never visited with Flynn.
Which meant doing some research.

I'll be posting some of the responses we got. Who was kind enough to figure some things out for us, who didn't seem to give a rip.

This LADY Has Gone Nuts

2008-01-10T08:49:00.000-08:00

If you're an allergy parent, you might not want to read this:
http://img.photobucket.com/albums/v75/Neomom/Food%20Allergy/GoneNuts1-1.jpg

Just like the comment I posted on the NYT's blog,
Us allergy parents work SO hard, so hard, to make everyone (at least the people coming in contact with our kids) aware of the severity of the allergy.
One step forward.
Then, someone (who is NOT an expert nor has any REAL knowledge) like this comes along...
Two steps back.

Help Us in Passing an Important Act

2007-12-27T14:53:00.000-08:00

This is the letter I sent our senators...

This will only take a second, you can use my letter below (just sub in your info for mine), & I'll include the important links....

This tells about what FAAN would like you to do:
http://www.foodallergy.org/Advocacy/FAAMA.html

This gives your senator:
http://www.senate.gov/general/contact_information/senators_cfm.cfm

This tells more about the act:
http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=110_cong_bills&docid=f:s1232is.txt.pdf

December 27, 2007
The Honorable Kit Bond United States Senate Washington, DC 20510
Dear Senator Bond,
I was excited to learn that Senator Christopher Dodd asking is a sponsor of S. 1232, the Food Allergy and Anaphylaxis Management Act. I am confident Recently, you received a letter from asking you to join him as a sponsor & I am writing to ask that you would please consider co-sponsoring and supporting enactment of this bill.
I’m sure you’re aware that an estimated 2 million school-age children suffer from food allergies, for which there is no cure. Avoiding any and all products with allergy-causing ingredients is the only way to prevent potentially life-threatening reactions. Reactions often occur at school, including severe anaphylaxis, which can kill within minutes unless epinephrine is administered. Deaths from anaphylaxis are strongly associated with delays in the administration of epinephrine.
[My husband & I are both educators & have seen the growing trend of allergies among children. In the schools we’ve taught at, we’ve never seen an efficient system put into place. This is a scary feeling for both the eductor and the parent.]
The importance of managing life-threatening food allergies in the school setting has been recognized by the American Medical Association, the American Academy of Pediatrics, the National Association of School Nurses, and the American Academy of Allergy, Asthma and Immunology.
[Our 4-year old daughter suffers from a life-threatening allergy to milk. Had it not been for the fast acting epinephrine injection she received after a reaction this past summer, she might not be with us. I hate to think of when she begins school, unless some guidelines are set in place.]
Unfortunately, there are no consistent, standardized guidelines to help schools safely manage students with the disease.
S. 1232 would require the Secretary of Health and Human Services to develop and make available a voluntary policy to manage the risk of food allergy and anaphylaxis in schools. The bill would create a small program of incentive grants to assist local education agencies with adoption and implementation of food allergy management guidelines in the schools.
Passage of S. 1232 is critically important to ensure the safety of my child and the other 2 million food-allergic school-age children across the country. Please co-sponsor the bill and work for its passage.
I will be happy to talk with your staff about this important legislation and can be reached at [***-***-****].
Thank you for your consideration,
Amy Perry

ARTICLE: Correlation of initial food reactions to observed reactions on challenges

2007-11-15T16:18:00.000-08:00

Three articles:

This article appeared in the June/July 2004 issue of Food Allergy News

Copyright 2004 The Food Allergy & Anaphylaxis Network

Research Update

Correlation of initial food reactions to observed reactions on challenges

Researchers investigated whether the organ system (i.e., the skin, the respiratory system, or the gastrointestinal tract) involved in an allergic reaction, or the specific food that caused it, could help to predict what future reactions would be like. They reviewed medical records of all children seen (approximately 3,000) in the Allergy Section at The Children’s Hospital of Philadelphia.

All of the children with a convincing history of food allergy and positive skin test results – a total of 1,769 patients – were offered an open challenge to confirm their food allergy. Researchers compared their initial reactions with the reactions that took place during the monitored open food challenge.

While it is more common for patients to have a similar reaction on re-exposure, researchers found that a mild reaction does not necessarily rule out a more severe reaction in later exposures.

Researchers also found that those with milk, egg, and peanut allergies were more likely than those with soy or wheat allergy to experience multiple-organ system reactions on subsequent exposure during the food challenge. Peanut also caused more multiple-organ system and anaphylactic reactions than it had previously.

Scientists also examined the patient records of individuals who underwent multiple food challenges. Researchers compared the foods that caused a reaction to the affected organ system.

They found that patients with allergy to egg were more likely to have reactions involving different organ systems the next time they were exposed to egg. Future reactions that involved more organ systems but were triggered by a food other than egg, were caused by a higher dosage of that food.

Source: Annals of Allergy, Asthma & Immunology, Vol. 92, No. 2.

A Great Article

2007-11-13T12:05:00.000-08:00

http://www.cnn.com/2007/HEALTH/conditions/11/12/milk.allergy/index.html#cnnSTCText

Happy Birthday to Everyone

2007-10-19T19:24:00.001-07:00

So excited! That Aldi carries a cake mix & 'matching' icing that is safe for Flynn. It's milk free & you can even smell the soy oil in the icing. Aahh, a familiar & comforting smell for us.

Just extremely happy that I'm not having to shop at the whole foods & organic stores for everything. And a cheap brand to boot!

Let's here it for Baker's Choice -- woot!

Some Non-Allergy Parents Just Don't Understand

2007-10-11T18:15:00.001-07:00

I've been visiting a message board over at STLmoms blog.

I got drawn in & replied to a very ignorant post about peanut allergies.
A mom was "venting" because she "couldn't bring a peanut butter sandwich for my picky eater". She didn't understand why several hundred kids couldn't bring peanut butter just because of a few allergy kids. Besides she said, what would it hurt?

Of course this infuriated me. I thought, how selfish could she be? And mostly, how ignorant?!

It took me back to the days at our old church, where the Children's Director didn't want to ban milk in Flynn's class. She plainly told me, "I just can't ask that of the volunteers" when I asked her to pass a rule that the parents not bring milk into the room. I ended up volunteering on one Sunday, Jeff on another, and the on the other 2 Sundays, we had to keep her with us... bored & loud in church.
I reached the point that I couldn't understand how a church preaching about God's love was failing to show it in a very simple way. In their 2 year old class.

So we decided to look into other options....that's where we found our new church. They extended so much love to Flynn, they changed rules, passed a no-milk rule, began buying only safe snacks for her, and changed everything they could to make it safe for little Flynn to belong.

That my friends, is more like it. God's love. Jesus wasn't afraid to offend the majority, for one. Let me point out how he felt about the religious leaders...and how he overlooked their disapproval in order to heal the sick & love the rejected.

Okay, enough preaching. Back to the stlmoms board.
After the dumb mom posted her reactions & how she couldn't dream of not sending a peanut butter sandwich, a few posts followed which gently pointed out the selfishness.

Here is one. I think it is excellent:

In Nov. 2005, a mom named Lisa Turner, whose children do not have food allergies, posted the letter below on the Kids with Food Allergies (KWFA) forum. She gave permission for anyone to use it should they need it. I think it's powerful because it's written by a parent who initially was very upset that her family would have to change its life a bit to accommodate others, and then -- because she educated herself -- came around to see why it was necessary.

*******************************************

Dear Parents and Guardians:

I am writing this letter to you because your school has decided to implement a ban on peanuts, tree nuts, and/or other foods that have been associated with life-threatening allergies, and I know the initial reaction you may have regarding such a ban. I am the mother of a little girl who started school this year. About two weeks before school started I read in a local newspaper that the school she will be attending has decided to put such a ban into effect.

My first reaction was one of shock, but it quickly turned into complete ANGER! I couldn’t believe that the school would actually do something that drastic because ONE child had an allergy. Since when did the misfortunes of one dictate the rule for the majority?

I rallied support together, I wrote to the newspapers, I called television stations, and I put up posters expressing my outrage and encouraging parents who felt the same way to attend the next school board meeting and “let our voices be heard”. I even drafted up petitions to have the members of the school board removed so that a new school board could be elected, one that looked out for the needs of every child instead of just one. After all, nobody was going to tell me that I couldn’t send my picky eater to school with a peanut butter sandwich!

Then I went online to get some ammunition. What I got however, was something completely different. I got an education. I stumbled across a site for people with life-threatening allergies and the parents of children with life-threatening allergies. The first thing I found out was that, although rare, it is a lot more common than I had realized, but being angry I posted my question, "Do you really think that a ban is necessary?"

I used all my arguments. If a child is allergic to bees, do you keep all the kids in at recess? If a child is in a wheel chair, do you build a ramp or tear out the stairs? I mean after all, there are other allergies out there, and there is no way to guarantee that the school will be completely free from these foods, so where do you draw the line?

At first I wasn’t open at all to hear their reply, I was just venting, but then I really started reading what they had to say, and it was then that I started learning. You see… I put my daughter on the bus for the first time in her life. I was afraid she wouldn’t find her classroom. I was afraid she would forget to raise her hand before she spoke. I was afraid she would get on the wrong bus coming home, but what I wasn’t afraid of was that I would get a call from the school saying that my daughter wouldn’t be coming home; she is being rushed to the hospital by ambulance because of a common, everyday peanut butter sandwich.

It was then that I realized what these parents are going though. Some don’t have the luxury of worrying about little things. These parents aren’t trying to take anything away from our kids; they are trying to keep their kids safe. I looked back at my initial reaction so I could figure out what had made me so mad, and when I was completely honest with myself, I found the answer. I was mad because I was going to be inconvenienced. I was willing to put a child’s life in danger so my daughter could eat a sandwich, and what did that say about me? I mean, if I saw a dog attacking any child wouldn’t I do whatever I could to protect that child? And if that is the case, why am I so opposed to eliminating peanut butter from 5 meals out of the 21 she will have in the course of a week?

The fact of the matter is you don’t keep all the kids in at recess, but you don’t put a child with a bee sting allergy in a lunchroom full of bees either.

The fact is EVERY child is entitled to a “free and appropriate public education in a least restrictive environment”, translated that means the school has a legal responsibility to provide a safe learning environment for ALL children, and where do you draw the line? You draw the line when the unique needs of the community served by the school have been met.

It’s not easy to put your child in the hands of strangers when you know that many of them may have just eaten, or are bringing to lunch, the same thing that is poison to your child, and many of these parents would home school if they could, but just like you and I, sometimes that is not an option. The parents of children with life-threatening allergies don’t expect us all to learn this overnight, and they don’t expect us to shop for our children as if they had this allergy, and while they know that the school will never be completely free from these foods, one less sandwich, or one less snack containing these foods being brought into the schools, will be one less risk to their child’s life.

I am not saying that it hasn’t been a struggle at times, but you have to ask yourselves… Is convenience really more important than life?

In my book, that answer is no, so any small inconvenience I have is worth it.

Sincerely, Lisa Turner

How a Child Might Describe a Reaction

2007-10-02T10:10:00.000-07:00

Children have unique ways of describing their experiences and perceptions, including
allergic reactions. Precious time is lost when adults do not immediately recognize that a
reaction is occurring or don’t understand what the children might be telling them.
The following text contains examples of the words a child might use to describe a
reaction.

In addition, know that sometimes children, especially very young ones, will put their
hands in their mouths, or pull or scratch at their tongues, in response to a reaction. Also,
children’s voices may change (i.e., become hoarse or squeaky), and they may slur their
words.

If you suspect your child is having an allergic reaction, follow your doctor’s instructions.

• This food’s too spicy.
• My tongue is hot (or burning).
• It feels like something’s poking my tongue.
• My tongue (or mouth) is tingling (or burning).
• My tongue (or mouth) itches.
• It (my tongue) feels like there is hair on it.
• My mouth feels funny.
• There’s a frog in my throat.
• There’s something stuck in my throat.
• My tongue feels full (or heavy).
• My lips feel tight.
• It feels like there are bugs in there (to describe itchy ears).
• It [my throat] feels thick.
• It feels like a bump is on the back of my tongue [throat].

Food Allergy News, Vol. 13, No. 2. ©2003 The Food Allergy &
Anaphylaxis Network. All rights reserved.

When The Moon Hits Your Eye

2007-09-11T13:30:00.000-07:00

Like a big dairy-free pizza pie...

That's amore!

(and a dirty oven)

While the pizza pies baked,

Flynn & Gabe made a pizza that can not be eaten (well, Gabe might beg to differ)

Can you guess which is the 'real' pizza?

Flynn's Dairy-Free Pizza Pie:

Pillsbury pizza crust
contadina tomato sauce
soy cheese (sliced, cut into squares)
California pitted black olives
Hormel pepperoni slices

Using 2 8" cake pans, Flynn spreads the crust out into the bottom of the greased pan
She then pours & smooths out the tomato sauce
she takes the squares of cheese that mommy cut & spreads them evenly
she then does the same with the cut olives *cut by mommy
she takes the whole package of pepperoni & distributes it as well.

Repeat in 2nd pan.

Mommy puts it in the hot oven (350 degrees)
Mommy gets it out about 10 mis later
Yummy!!

Experiences with Restaurants

2007-08-24T06:46:00.000-07:00

Hopefully soon, I will be posting some experiences, both good & bad, that we've recently had with restaurants.
I think it says a lot about a company's customer service, when they deal with a situation like ours.
I will first talk about eating at Bob Evans last night & the great experience we had there.

It's Official... I'm Human

2007-06-11T19:34:00.000-07:00

It's not easy to be the parent of an allergy kid.
NO ONE knows, until they experience it first-hand.
And before I share my screw up, I feel the need to defend my own honor by sharing just how careful I really am....
When eating dinner, I typically eat w/ my right hand, to reserve my left hand (clean) to deal w/ Flynn, her food, her cup, etc.
I label her cup & Gabe's w/ a "G" or an "F", for when Papa, Nana, Grammy, Aunt G, or Hannah babysits.
I read labels once, twice or several times.
I forgo some parties or situations where I feel she might not be kept safe.
I put my career on hold, as working full time would force us to put the kids (Flynn) in a group setting where she might not be kept safe.
I'm her advocate in certain situations like church... for example, we quit the last church we attended because they wouldn't make her classroom a milk-free zone, as the children's director, "[couldn't] ask that of [her] volunteers".
I read everything I can get my eyes on.
We try our hardest to educate Flynn on her allergy, but try just as hard to make her feel like she's "normal" & doesn't miss out on too much.
I'm a clean freak when dealing w/ milk. If I'm giving Gabe his milk cup/refilling it, I wipe the counter off after his lid touches it.
I hover over her in group situations.
And everyone who is around my Flynn-parenting, can attest that we are careful, to a fault. It's almost neurotic how we behave around her.
So, can you imagine that last night, I made the first & worst mistake I've ever made with her....
We went to Delaney's birthday party at Woody's Cafe (a chuck e cheese type of place)... so I had planned to not only bring her her own dinner (plain hamburger happy meal), but I wanted to be sure to bring a special dessert/snack for her to eat while everyone else ate cake.
P.S. I'm on steroids for an allergic skin reaction (to what I'm not sure), and am on a high dose of prednazone, to which I'm blaming any not-myself-ness....
The other day I had the kids (way too close to naptime) at Dierbergs trying to do a quick shopping trip. Gabe was throwing a fit, he was tired & hungry & bored. He was trying to cliff dive from the shopping cart. People were staring, Flynn was laughing & I was sweating.
On the end cap, I spotted the cutest animal crackers. They were iced & sprinkled & were calling for me to buy them, as the funnest b'day cake alternative.
Remember how I mentioned my meticulous behavior when it comes to label reading?...So I picked them up, at the very bottom was the allergy warning (a practice that the FDA tried to pass by Dec '05) which informed me that the only allergies were peanuts.
I've NEVER by the way, just took their word for it, I've always read each & every ingredient myself to see if any of the 40-something milk-based ingredients are in the food.
But I didn't. I don't know why. Maybe the roids. Maybe Gabe's ability to rush me. I don't know.... Maybe I figured I'd read closely at home?
I didn't.
I grabbed them last nite & I put them in a container for her to eat at the party.
And she did.
Then she ran off into the ball pit & started playing.
About 10 minutes later, she ran up to me & was crying, and sneezing & clawing at her throat & skin.She was clearly having a reaction....but to what? I had no idea. I sat her in a chair, grabbed her bag, and started medicating her....benadry, albuterol...Then, as God sent him, up walked a doctor, a friend of the Frosts & he quick got involved.
Not long after, she started to drool & show signs of airway closure.
I knew it in the back of my mind, but Lee pointed out the obvious....the EPI PEN.
I hate the epi pen....altho there are several situatons where she probably SHOULD have had it, I didn't....cuz I'm scared. It's A TON of adrenaline, a shot of a chemical that will open your vessels, your airway, you name it.
That's when I lost it.... you know that I'm typically a calm & collected person when it comes to her health, but I knew this was the worst she has been.
He gave her the shot....and we jumped in the car....
**************************************
We passed a cop who I yelled out my window to for a police escort.... Dr Lee from behind me yelled out that he was a physician & that Flynn was having an allergic reaction.....but apparently it was donut break in a matter of minutes (sorry to my friends & family whom are policemen & take offense to that), as he declined.Fine. I turned on the flashers & floored it, pealing away from the cop so he could get back to pasting the big orange sticker on the stalled car (apparently far more important than saving a life).
We blew through red lights & stop signs & in probably 2 mins, I skidded into the ER entrance.
Dr Lee grabbed Flynn & her bag, I grabbed Gabe, and off we ran.
Thanking God a millionth time for Lee, who ran in w/ Flynn, again announced his profession, & what was going on. They ran us back to a room, where in a matter of milliseconds, there were 3 or 4 people in the room.
It was bizarre.
It was surreal.
It was my little girl coming close to death.
**********************************************
I write through tears as I reminsce the way I felt. Jeff was at home 30 minutes away & I was so scared. I realize at times like that just how much I rely on him...and thank God that I'm fortunate enough to have a husband who is an equal partner in parenting.
**********************************************
They gave Flynn another shot of epinephrine, more antihistamine, and started her on oxygen & albuterol, and something else that I'm forgetting. They put leads on her chest, to monitor her heart (that epinephrine is some crazy stuff), and she had a "glow toe" (blood ox pulse thing on her toe).
Her swelling started going down. But we spent the rest of the night under close observation with regular intervals of meds.
Can I tell you what a stud this girl is? Other than crying from the epi pen (which I would do too), she didn't cry. She never showed fear. She is amazing.When I was holding her cheek to mine while she got the epi pen, we talked again about the lesson that meant so much to her a few weeks ago.... the book of Joshua: God is with us always. He never leaves us. I'll tell you that I needed it as much as she did. Maybe more.
I wish I could be more like her. She never doubts it. She's quick to remind me that God made "the earth, the planet we live on" & that Jesus lives in our hearts. When she looked at me through her swollen eyes last night, she reminded me that it was okay.
This morning, while we drove to my parents to get Gabe, she called up to Jeff, "I wanna be a teacher when I get big, just like you." Even though her professions of choice are fleeting, it didn't keep Jeff & I from getting teary-eyed.
And I think she could be a doctor.
But God's definitely got something special planned for her.

13 FACTS ABOUT FOOD ALLERGIES

2007-05-21T04:56:00.001-07:00

13 Facts about Food Allergies:
1. Scientists are reporting an increase in food allergies over the past decade. In particular, peanut allergies among young children doubled between 1997 and 2002.
2. Approximately 12 million Americans suffer from food allergies, with 6.9 million allergic to seafood and 3.3 million allergic to peanuts or tree nuts.
3. Food allergy is the leading cause of anaphylaxis (a severe allergic reaction) outside the hospital setting.
4. Eight foods account for 90% of all reactions in the U.S.: milk, eggs, peanuts, tree nuts (walnuts, almonds, cashews, pistachios, pecans, etc.), wheat, soy, fish, and shellfish.
5. There is no cure for food allergy. Strict avoidance of the allergy-causing food is the only way to prevent a reaction.
6. Food allergic reactions result in over 30,000 emergency room visits each year.
7. It is estimated that between 150 and 200 people die annually from anaphylaxis to food; including children and young adults.
8. Approximately 2.2 million school-aged children have food allergy.
9. One in every 17 children under the age of 3 has food allergy.
10. Milk allergy is one of the most common in young infants, with 2-3% of children under three years of age allergic to cow's milk proteins.
11. Trace amounts of a food allergen can cause a reaction. Patients should be on guard for hidden ingredients (such as milk or peanuts) in unsuspected places such as candy, baked goods, trail mixes, sauces, desserts, and gravies, just to name a few.
12. Medications can even contain dairy (Prevacid Solutabs is one example).
13. Virtually all infants who develop cow's milk allergy do so in the first year of life, with about 80% ‘outgrowing' their milk allergy by their fifth birthday. Nearly 25% of these milk-allergic infants retain their sensitivity into the second decade of life, and 35% go on to develop other food allergies.

Getting More Recognized

2007-04-19T12:03:00.000-07:00

Checkout this article...really hits home.

I guess a huge part of me is mucho relieved that allergies are getting some exposure.

Another huge part of me worries even moreso, about Flynn attending public school.

And a huge part of that last part, will pray harder than I ever have... that she'll outgrow this ugly thing.

Milk Allergy Summary

2007-01-30T16:24:00.000-08:00

I had a few moms ask for info re milk allergy...how we discovered it...what we do now. And here's what I compiled based on our experience. I send this to anyone who wants just a little info...

Milk Allergy Info

An allergy to a cow’s milk protein is much more serious than most people imagine. It is NOT lactose intolerance!! (I get people saying that all the time). It is when a person has an allergic reaction (be it rash, vomiting, anaphylaxis, etc.) to ingesting (or in Flynn’s case just coming in contact with) a substance (food or drink) which contains a cow’s milk protein. A severe allergic reaction could end up as serious as an anaphylactic reaction (her stopping breathing or even worse).

I’ve read that 50% of babies outgrow the milk allergy by two. Flynn was tested most recently at 27 mos & on a scale of 1-4, had a 4+. She is supposed to be tested every 6 mos, but because they have such a hard time putting a line in her vein (they ended up cutting her finger & squeezing the blood out), we’re opting to test her yearly instead. We PRAY she’ll outgrow this.

Ours has been a learning experience. We didn’t personally know anyone w/ a milk allergy, so it wasn’t even something in the back of our mind. At 6 mos, for the first time she was given formula (combined with breast milk) & had a horrid reaction. Again, totally unaware of what it could be, we UNDER-reacted (later learned she should’ve been given an EPI-pen & taken to the ER). I wasn’t w/ her, but she sneezed, swelled, wheezed, & eventually vomited. This happened 2x more before we made a connection. Our HORRIBLE pediatrician (we’ve since switched back to our original one), said that it wasn’t indicative of an allergy & try lactose free (WRONG!). He also didn’t recommend an allergist (wrong again!). I figured out the allergy – even in foods, when she ate Gerber graduates meat sticks. They contain whey & after eating just one, her face was filled w/ welts.
It’s still so bad that last year, Jeff ate an ice cream sandwich & failed to wash his hands afterward. He picked her up from the bath & everywhere his hands touched her, left red spots with white bumps.

The most frustrating thing is trying to find a variety of foods that are safe. I didn’t wean her from the breast until 14 mos (I couldn't continue to nurse as I was entering the 2nd trimester of pregnancy). When I wasn’t w/ her, she got NUTRAMIGEN (a very broken down formula & expensive!!) Now she drinks SILK. It’s the mildest tasting soy milk (in my opinion) & I can cook w/ it (as a sub for reg. milk) & Jeff / I don’t notice.
A very helpful source when it comes to this, is the vegan website (never thought I’d say my 1-yr old was a vegan!!)
http://www.peta.org/accidentallyVegan/
This list, combined w/ some other foods that I know are safe, is the list I carry w/ me (particularly when grocery shopping).

I love our pediatrician, she's awesome, however sometimes I feel like I know more about this situation than her. I'm sure this is untrue, but when she asked if we wanted to do a milk challenge (giving a sample of milk in a controlled environment), I remembered that she doesn't realize how serious this is for Flynn.

You are your child's advocate & basically no one can be trusted, including ME! Thankful only to God, I have never screwed up. But I am the only one. You can't cross-contaminate, use the same utensils or allowher to touch ANYTHING milk-related. You must wash your face & hands anytime you've eaten dairy, or else not touch or kiss her! This is easy for the family to forget.
Beware of employees at healthfood stores, who appear to be knowledgeable on the subject. When Flynn was 2, we gave her rice cheese from THE NATURAL WAY. The employee there, advised Jeff to purchase this & give it to Flynn. It contained a milk ingredient & after a TINY corner of the sliced cheese, Flynn began to drool & wheeze. When I contacted them later, they simply sent a letter of apology (they didn’t even refund our $5 spend on the cheese!!).
What we finally ended up doing was always carrying a can of CAMPBELL’S CHUNKY chicken noodle soup in her diaper bag. That way, wherever we end up (friends or family), we know we have a safe meal for her to eat. We also rely heavily on McD’s plain hamburgers. Their fries are safe for her as well.

I'm happy to answer any questions based on our experience. I would've loved a resource like this while I was going through the initiation of this. Good Luck!

Helpful Websites:

http://kidshealth.org/parent/misc/milkallergy_cutout.html (this page is great to print out & pass out to the people who might be caring for your milk allergy child)
http://kidshealth.org/parent/nutrition_fit/nutrition/milk_allergy_diet.html
http://www.wegmans.com/health/nutrition/MilkAllergy.asp (this kinda explains the kosher symbol & how that helps us)
http://www.med.umich.edu/1libr/pa/pa_milkall_hhg.htm (after looking @ this particular page, a little helpful hint, we ask the deli counter if they’ll hand slice us some meat for Flynn – they’re usually understanding)
http://www.allergicchild.com/default.htm (a page by parents of 2 allergic kids)
http://messageboards.ivillage.com/iv-ppallergies (a message board I found helpful)

*Amy’s disclaimer: I am in no way a medical professional nor have I had formal training on this matter. Please consult your child’s pediatrician before trying any of my ideas.