Wednesday, January 7, 2009
Check Labels on Medicines & Lip Care
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.
Tuesday, May 13, 2008
A Day in the Life of an Allergy Mom
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.
Tuesday, February 12, 2008
O's, not X's
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!
Friday, February 1, 2008
Snow Cream
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.
Thursday, January 31, 2008
Lee's - thumbs up (a slow thumb, but a thumb nonetheless)
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
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"
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
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
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.
Thursday, January 10, 2008
This LADY Has Gone Nuts
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.
Tuesday, January 30, 2007
Milk Allergy Summary
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).
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.