Kids Food Allergies Blog

Inspired by Purple Mommy’s post on Firsts, I’ve been thinking about some of my own — bad, good, and those yet to come:

• I remember the first time my eldest’s eyes swelled shut from the dusting of cheese on a cracker.
• I remember the first time she verbalized how unfair it was to have food allergies.   It broke my heart — because everything she said was true and there was nothing I could do to fix it.
• I remember the first time she had asthma attack — holding her small frame in my arms all night, willing her to breathe, using a medicine dropper to administer medicine to a child I could not wake, praying that she would make it through the night.

I also remember …

• The first birthday party she could go to (other than her own) where the parent made sure that all the food was safe for her to eat.
• Her first wonderful teacher who, through actions (not just words), turned food allergies into a non-issue.  Our family could relax and be like normal families — focusing not on my daughter’s safety, but on her learning and having fun.
• Her first chocolate bar.  This is what it looked like:

She has wanted a chocolate bar for as long as I can remember.  There was always an excuse.  “That has dairy.”  “That may be cross-contaminated with nuts.”   She was pretty good about it.  She wouldn’t cry.  But as her sad eyes would look down, I could always feel her sadness.  So I did what so many food allergy moms do: I looked for a way around the problem.  I tried melting down safe chocolate chips into shaped molds and refrigerating them.  It was OK, but not like a shiny wrapped chocolate bar.  Yesterday, our world changed forever.  The folks at EnjoyLife sent us a box of their new dairy-free, soy-free, nut-free chocolate bars.  Boy, are they great.  There are 3 flavors: dark chocolate, rice milk chocolate, and rice milk chocolate with crispies.  We did a taste test.  My daughter wouldn’t declare a favorite, “they’re all great!”  (I think she was afraid I take away the 2 she liked less.)  Halloween is going to take on a whole new dimension this year.

What firsts do I hope to someday remember fondly?  Since I have all but given up hope that her allergies will be outgrown — my hopes are humble…

• My daughter’s first allergist visit where no new food allergies are discovered.
• Her first drop-off playdate and birthday party.
• Her first school year without anxiety over food safety and health forms.
• My first vacation with my husband.

 A mom in my food allergy support group provides additional thoughts to support to Beth’s comment that Back to Nature Oreos may not, in fact, be peanut free.  She writes:

Back to Nature recently came out with a Peanut Butter sandwich cookies.  It is in the same shape as their Chocolate Creme (Oreo-type) Sandwich cookie, and it has the exact same emblem on the cookie, same packaging, etc.  Which would lead one to assume that they are made on the same equipment or at least in the same facility.  (I should also add that on the Peanut Butter sandwich cookie box, no where does it have any allergen warning; just says “peanut butter” in the ingredient list — and not in bold print, I may add).

 So since I use so many of their foods, I called many times to try to get answers and was given the same schpele over and over about how, if there was a risk, they would label it.  (I am attaching the schpele below because it is what they put in email form when you email the company).  I also want to add that one time when I called customer service and spoke with a supervisor, the supervisor said “there are not peanuts in the cookies — it is peanut butter”.  So clearly, there are some issues with Back to Nature.  This is the schpele:

 ”We understand that allergic consumers are concerned about the potential carryover of an allergen between products that are manufactured on shared equipment. Most of our production lines are designed to be convertible to other products. If a product is made on shared equipment, every reasonable precaution, including stringent cleaning and sanitation practices, is taken to prevent cross-contact with the eight major allergens (eggs, fish, shellfish, milk, peanuts, soy, tree nuts and wheat). When contact with one of these allergens is unavoidable, then the product is labeled appropriately. Please be aware that formulas may change and the best source of information is the ingredient line. We ask that our consumers take the time to check the ingredient line prior to purchasing a product.

I hope this information will assist you with your food choices.

For more information about food nutrition, visit www.kraftfoods. com and click on Healthy Living.”

The bottom line is that my instincts are telling me that they are doing a very poor job of labeling.  The fact that there is no sort of allergen warning or bold print on the Peanut butter cookies is a clear example to me.  And, again, I have no proof, but my gut says that because the cookies are identical, I would assume that the Chocolate Creme cookies are made on the same equipment or at least in the same facility as the PB cookies, without any cross-contamination warning.  If that is true, that would lead one to reason that they have dropped the ball on cross-contamination labeling in general.

I’m convinced.  Over my daughter’s vehement protests, no more Back to Nature Classic Cream Cookies for my family.  That means I have 11 months and 3 weeks to find another peanut-free cookie to send in for next year’s birthday snack.  Oy vay!

Dropped off the eldest at school Monday.  She had a little cough — but it didn’t seem serious enough to warrant staying home.  (My husband and I don’t want to get her in the habit of staying home every time she has a cough or sniffle.)  Picked her up 2 hours later (her school has a half of a half day Mondays … don’t ask).  She had a fever and was wheezing something fierce.   Two naps and a trip to the doctor later — turns out she was pretty sick.

I asked her if she felt OK during school.  She said “No, not really.  But I felt too shy to tell my teacher.”  When I asked her what bothered her during school she responded, “I felt like I needed my mommy.”  I asked her about breathing, “fine.”

The doctors were worried that my older daughter gave my infant an infection.  So I had to run the little one to the hospital to have blood drawn.  Since I didn’t want to take a sick child to the hospital, for fear she would get sicker — I left her with a neighbor (over the dinner hour).  Came home roughly an hour later, and the eldest’s face was covered with a rash.  She said she had been itching the whole time I was gone.  I asked her why she didn’t ask the neighbor to give her the benedryl in her backpack.  She said she didn’t think of it.  It’s not the neighbor’s fault.  It’s not her fault.  I should have prepared everyone better.  I just didn’t have time.  And sometimes real life works that way.

Because my daughter is so mature, I sometimes forget she’s just five.  Maybe I expect too much of her.  Yet, I am afraid that if I am not around - she will not speak up for herself and get the help she needs.  On the allergy front - I have always been confident that she knows her own body and is able to articulate her needs.  I now realize that ability to articulate needs does not necessarily translate into speaking up for yourself.  No harm done when it’s a little rash — but what if it had been more severe?  I shudder to think.  On the asthma front - I now question whether she knows what wheezing (or an asthma attack) feels like.  Since wheezing doesn’t seem to bother her, I am afraid it will go unnoticed for too long, until it gets dangerous.

The end result: she needs a pep talk on the importance of telling the grownup in charge when she’s not feeling well — so that they can get her the help she needs.  And she needs practice doing this, or I fear she will not know what to do in the case of a real emergency.  You know how kids have fire drills at school to prepare them for the real thing — I think I may have to do an asthma/allergy drill to prepare her for an event which I hope will never come to pass.

Not sure whether this is a smart move that will make her feel confident and prepared or an alarmist one that will make her feel more fearful.

How do you empower your kids to be their own health advocates when they are not with you?

Thank you for support on the birthday-snack craziness and for your very good ideas about peanut-free cookies.  As it turns out, the clinic aide tells me, my daughter’s cookies were the only ones distributed to the class because the other 3 kids with September birthdays brought in cookies manufactured in facilities that process peanuts.  So, my daughter’s cookies were a big hit with the class (happy point 1), and nobody got sick (happy point 2).

A couple of thoughts on your comments…

Thanks to  Jennifer B for letting me know about the bakeries — small and large, local and national — that can meet my needs.   By the way, I really like the Lemonade Bakery.  The main reason I didn’t order from her is that the school was pretty specific that it needed to be store packaged and store bought.  (I was afraid that the school would treat her goods as homemade and not allow them.)  On the mass-produced prepackaged front — I am so glad to know that Cherrybrook Kitchen makes ready-to-eat vegan and nut-free cookies.   Wahoo!!!!!!!!!  If I had known a bit earlier, I could have avoided this whole messy situation for a mere $3 per 6 oz (a small price for my sanity).

 I also appreciate Beth telling me that Back to Nature does in fact make peanut butter sandwich cookies.  Yet another “safe” snack down the tubes.  But I am glad to know.  I am also glad the school did not.  If she had any mild health symptom (headache, stomach upset, rash) after eating something that they suspected may have had a trace of peanuts — they would have used an epipen.

I really liked Aimee’s suggestions to bring a safe candy as a birthday snack — or to skip the food altogether and bring some other treat.  Both of these are wonderful suggestions.  But they weren’t the teacher’s idea.  And they fall outside the boundaries she set down for the class — so I can only imagine how they would be received.  If it is my daughter (and one other peanut allergic child) that they were trying to protect, I don’t understand why they wouldn’t talk with us before setting inflexible rules.  I would have told them how hard it is to find peanut-free cookies.   At kindergarten orientation, the teacher told me that when she has a student with severe allergies — she limits birthday snacks to store packaged/store-cut fruit.  To which I responded, good idea — but don’t do this on my account since I would send my daughter a separate snack anyway.  (I am afraid there might be sulfites or other preservatives on the fruit to which my daughter is sensitive, if not allergic.)  And that’s when the cookie decree was handed down via backpack express.

Liz asked why I didn’t buy Divvies cookies for the whole class.  It’s a matter of economics.  28 kids = 3 dozen cookies plus shipping.  These are kids she met 11 days ago.  Quite frankly, if I’m going to spend the money on Divvies cookies, I’d rather do it for kids we know, and who would appreciate it.

So — I feel lucky we’ve dodged the birthday snack bullet for the year.  The other celebrations will be easy, since I can pack whatever I want for my child.  I’ll be curious whether the rule might change for the rest of the year, given how hard it was to follow in September.  I’ll keep you posted.

In my daughter’s backpack — I got a smug and condescending note from her teacher. It reads:

I spoke with the Administration and we must limit the birthday snacks in kindergarten to cookies. What about Oreos? This kind of cookies is safe for students allergic to nut/peanut products.

This note confirms my hunch that the teacher passes herself off as an expert about allergies, while in fact, knowing little about them. Oreos? Goodness gracious. From Nabisco? Makers of the Peanut Cream Double Stuff Oreos as well as Nutter Butters? You’ve got to be kidding. I know I should just let it go, but I feel the need to write back. In tomorrow’s backpack, my teacher will find this note.

Dear Teacher:

Although some of your students with nut allergies may have brought oreos in the past — oreos are actually *not* safe (risk-free) for those with severe peanut allergies since plain oreos are made in shared facilities (and most likely on shared equipment) with peanut-butter cream oreos.

I do not understand the administration’s denial of my request for an exception to the rule to ensure my child can enjoy a shared snack with her class that is produced in a nut-free facility. Though I do not understand it, I will respect it.

I will send in 2 boxes of Back to Nature brand oreos, since I do not believe this brand makes peanut butter oreos, thus these cookies carry less of a chance of triggering an allergic reaction — and my daughter has safely eaten them in the past.

I briefly entertained Rachel’s suggestion of sending in Enjoy Life cookies — but I don’t think it would have the desired effect of making my daughter (or her classmates) happy. It’s an unfortunate situation, really. I hate starting out the school year on such a negative note with my child’s teacher. But between their inflexibility on the health forms, the health plan, bus transportation, and now the birthday snack — I am really wondering whether this school district is a fit for my family.

In consideration of kids with allergies, my daughter’s teacher is limiting birthday snacks to peanut-free, store-bought cookies.  The only problem — I have yet to find a local grocery store or bakery where I can order/purchase/pick up cookies that are safe for my allergic child.  I inquired at Whole Foods whether I could special order a batch of vegan/nut-free cookies for a dairy and peanut-allergic child.   The store representative politely but frankly explained that they could not assume that kind of liability.  (His unspoken question lingered why *I* would be willing to take on that kind of risk.)   I am trying very hard to get the teacher to allow me to bring in something other than a store-bought cookie for the class to share.  The clinic aide and the assistant principal both independently suggested that I bring store bought cookies for the class and a different treat for my daughter.  I can think of nothing more assured to make her cry than her mom providing a snack for the entire class that she cannot eat.  I would rather bring nothing at all!  I understand the school wanting parents to provide store bought treats — so that standards of cleanliness can be enforced and ingredients can be verified.  But I do not understand why they cannot be more flexible in allowing me to bring in something other than cookies.  Their risk would be greatly reduced by allowing me to bring a treat, like Philly Swirls, that she has eaten many times without allergic reaction.   And the class might actually enjoy it.   But given the highly regulatory environment which I am discovering public school to be — I have a feeling that my appeal for common sense will fall on deaf ears.  Wish me luck.

Everyone made it through my daughter’s first week of kindergarten with relatively few battle scars — my daughter, me, her teacher, the other kids, the public health nurse.

In honesty, I know very little of what happens in her classroom.  There are 27 kids.  1 teacher.  1 assistant.  My daughter reports less and less of what happens in her classroom every day.  (She turned 5 last week.  I think she’s 5 going on 13.)   Here’s what I do know:

• There’s a big nut-free sign in front of the door to her classroom.  Kids wash hands with wipes before and after snack.  The teacher distributed a letter from the public health nurse to the parents of her classmates at open house telling them not to bring nuts or nut products for snack.  The teachers apparently check the snack boxes to assure the integrity of the nut-free classroom.  (Though in practical purposes, I don’t know what that means since my daughter said that all of the kids and their parents must be following the rules, which I find hard to believe the first week of school, since no one’s snack has yet to be confiscated.)
•  The teacher and public health nurse make me feel like they think I’m a bit crazy/neurotic — at least compared with other parents of food allergic kids at the school.
  • Allegedly, I’m the only parent who flagged food allergies for the school administration prior to the beginning of school.  At the open house, and on the first day of school, I saw parents (of kindergarteners, even) strolling casually into the health clinic asking if they needed to fill out any forms to leave an epi-pen at school.  Who are these folks?  Why are they so calm about this?
  • I’m also in the minority of parents who will not allow my child to ride the bus given that she is not allowed to carry an epi-pen or benedryl on the bus.
  • The public health nurse raised an eyebrow me for further modifying my daughter’s health forms to specifically account for how I wanted skin contact with cheese and cheese residue to be handled.  She claimed that I didn’t need to be that specific - that a catchall buzzword I used on the form would allow the desired course of action to be taken.  I am tired of the county demanding specific language to cover its liability while not allowing parents to spell out how they want their children to be appropriately cared for under specific circumstances.
  • I’m kind of annoyed about how birthdays (and birthday snacks) are handled.  Coming from the world of preschool — where the teacher made kids a crown, everyone sang, and parents could bring whatever nut-free product they want … public school is a whole other ball of wax.  On Thursday, no one sang to my daughter.  The teacher privately said happy birthday — but none of her classmates even knew.  Birthdays are celebrated once a month for all the kids in the class with birthdays that month.  Seems reasonable.  The school has a rule that birthday snacks for the class have to be store bought — so that there are clear food labels, reduced risk of cross-contamination, and food being prepared under stricter sanitary conditions.  Not happy I can’t make cupcakes, but still seems reasonable.  So, I ask the teacher if I can bring Philly Swirls — because I can’t buy cupcakes/cookies from a dairy-free/nut-free facility.  Her first answer was no - that she will limit the birthday celebrations to store-cut fruit … so that everyone can share in the birthday treats.  I told her I wasn’t OK with that, since kids might bring in fruit with sulfites, or in syrups.  I would be sending a special snack for my daughter anyway.  Then, I got a letter saying that parents could only send in store-bought cookies for birthday snacks.  Huh????? I’m not sure what to do.  I will ask again about the Philly Swirls (even at the risk of annoying the teacher) - because it would really make my life easy.  If that’s a no — I am wondering whether Whole Foods could prepare nut-free, vegan cookies.  I know they have the ingredients.  I imagine they could clean the mixer, baking sheet, and utensils.  I bet they even could dedicate a few minutes in an oven without nuts.  Even if I could get them to do all of this … would it be safe???

I wonder what next week will bring.  I hope you and your children had easy first weeks of school and would welcome any stories about your first days — or suggestions on how to handle our school birthday snack dilemma.

Thanks to all who weighed in with congratulations on the baby and support of dairy-restricted nursing. Baby girl is now 3 weeks and 2 days old. Here are some thoughts from the past few weeks:

• I ended up needing small quantities of hypoallergenic formula in the hospital. I had a very small, very hungry newborn who screamed around the clock because she was hungry and my milk had not yet come in. When I asked the hospital for hypoallergenic formula — first, the nurses told me I shouldn’t use it/didn’t need it. Then, they told me that I needed a doctor’s prescription for it. Tough to get at 3 am. I’m really glad I brought my own. And I’m even more glad that several weeks later, I no longer need to use it.
• I don’t know why I was so worried about producing milk on a dairy-free diet. Wasn’t an issue. But for those who have similar concerns, I discovered a delicious calcium source: calcium-fortified 100% cranberry juice. I like it much better than calcium-fortified OJ.
• I keep looking for clues that could indicate whether baby 2 will become allergic kid 2. But my initial observations point both ways. It’s just too early to tell.
  • Could be allergic: is very fussy after I eat dairy or onions (I should know better on both counts), born with big allergic shiners under the eyes (could also be newborn puffiness)
  • Could be not allergic: less sensitive skin than my first born (no eczema, cradle cap, diaper rash), less alert than my first born.

Time will tell. I’m going to stop beating myself up too much. I will watch what I eat (in moderation). I’m still not giving her solids until 6 months, and keeping her dairy and nut free until an allergist indicates otherwise.