Kids Food Allergies Blog

At my local Whole Foods last Friday, I nearly wept in the baking aisle.  Perhaps this product has been on the market awhile, just not in grocery stores.  Dairy-free, peanut-free, chocolate FROSTING, courtesy of Cherrybrook Kitchen.   Haven’t tried it yet, but can’t wait to do so.  I am much more inclined to bake cupcakes if I don’t have to make frosting too.  As I mentioned in an earlier post, I really hate making frosting.

Also, just learned about a new website about Halloween with food allergies, where you can learn about safe candies and download a sign for your door saying that you are providing allergy safe Halloween candy.  Check it out: http://www.allergyfreehalloween.com/

One kidsfoodallergiesblog.com reader writes in asking for your thoughts on a situation at his child’s school.   I have copied his comment here for your feedback.  At the end of his comment, I offer my own thoughts on the situation.  Please share your thoughts as well.

1. Allen Says:
   October 20th, 2008 at 1:28 pm

I am interested to know what others think about a situation at our school. There is a girl, nearly 9 years old with allergies. Her Mother claims she is so afraid that her daughter “might” have a reaction that she still has a nurse in the classroom. Restrictions have been put on the class which include banning students from using their own medications prescribed by their own doctors (ACLU is looking into student rights violations).

The child has no responsibilities in caring for her allergies. She instead demands someone wipe off her pencil if she drops it, and has the nurse do everything for her including wiping off her desk and chair. The Mother has said that her child will “die” if she were to go into a restaurant, grocery store, or someone’s home. Yet, the family goes to Disney World for a week at a time, the daughter plays soccer (a contact sport) and they have been caught eating at restaurants and running around Costco.

The parents have said that she cannot touch other students, as well because she could “get sick and die from touching them”. Yet, all last year she secretly touched other students and never got sick.

What do you all make of this? I have a child with allergies, but we do not take the paranoid, extremist position as does this family. Our community is very concerned that this child will never grow up to learn how to care for herself and perhaps the allergies are not as bad as the Mother makes them out to be. When parents have asked for specifics, the Mother cuts off all communications and has never shared what is really going on. It makes us all wonder.

 kidsfoodallergiesblog.com reaction:  My first reaction is sadness for this child and for her mother.   I can only imagine what traumatic event may have happened in this 9 year-old’s life to provoke such a fearful way of navigating the world.  I was curious whether the nurse is a reaction to the mother’s fear or the child’s.  Either way, I envision expensive therapy bills for one or both parties when the nursing eventually stops — as I imagine it must — by the time the child enters junior high, high school, or college.

As the mom of a 5 year old, I know how terrifying it is to let go and begin to share the responsibility of managing allergies with one’s children.  I have often wondered when is too early — but your post suggests 9 might be a bit too late — to expect children to start taking initiative to help manage their allergies in the real world.   Some of the mother’s requests may be justified.  For example, having a desk wiped off first thing in the morning if the child is contact allergic to many things.  (Perhaps a custodian could do it instead of a nurse?)  But with so many outlandish requests thrown into the mix, people may seem put off when asked to accommodate requests that are in fact reasonable and necessary.

If the parents don’t work with this child to help empower her and to diminish the role of allergies in her life (as a part of her life, not the center of it), I fear what will happen once she hits the teenage rebellious stage.   Perhaps the child’s allergist could sit down with the family and help them to figure out what is/is not medically necessary.  Though it doesn’t sound like the mother is open to suggestions.  Tough situation.  For the benefit of the child, her family, and the families of all the other children in her class — I hope that a professional is able to get through to the family and give them the advice they need.

Anyone else care to weigh in?

Tip 4 for Celebrating Halloween with Food Allergies:  It’s all about spin.

I recognize that the chances of my daughter getting sick from touching wrapped candy is really, really small.  Still, I feel a little squeamish about the idea of letting her skin touch unsafe foods.  She *did* manage to break out in hives after gathering wrapped candy (which she didn’t eat) from a pinata at a birthday party the summer before last — and I didn’t think that was possible either.

My sister came up with a solution that’s absolutely brilliant: gloves.  That way, if for some reason a fellow trick-or-treater munches on peanut butter cups and then touches the neighbor’s candy bowl — no worries, her skin is covered.  Easy peasy.  But, how to get my daughter to agree to this idea?

It’s all about spin.  Take allergies out of the equation and make it fun.

Me: “You know, you look really beautiful in your Belle costume.  But I think you’re missing something.  You know what Belle wears when she gets dressed up for dinner and dancing?  Long white silky gloves.  If you want to be fancy like Belle, I would be happy to get you a pair of long silky white gloves — just like the ones she wears in the movie.”

Daughter: “Really?  That would be really great.”

I took allergies right out of the picture.  And she bought right into the glove concept, as if it were her own idea.  If she hadn’t wanted to wear them, I would have let her go trick or treating anyway without them.  But in my mind - I was glad to pay $6.50 for a little peace of mind.

I’m not sure what other costumes would lend themselves to gloves.  My husband and I came up with: astronauts, firefighters, trash collectors, surgeons, boxers, and fish mongers.  Maybe even frogs.  Definitely princesses.  If you’ve got a 2-6 year old girl who is allergic to dairy and/or nuts — I hope the glove trick works for you as well.

Tip 3: Plan ahead of time how you want to handle Halloween.  I know this sounds obvious.  But sometimes things just creep up on us, and we don’t have time to give thought how we want things to pan-out.   By planning in advance, you can make conscious decisions that will steer a course for a safe and happy Halloween for your food allergic child.  Do you want to take your child trick-or-treating, or begin an alternate tradition instead?  Do you want to get in the spirit through decorations or crafts in addition to (or instead of) food?  If there aren’t safe sweets available at your grocery store — what can you make or buy online?   How is Halloween celebrated at your child’s school and in your child’s classroom?

The Kids With Food Allergies site offers many useful suggestions for celebrating Halloween at school and at home.  I urge you to check out their site.

Since my daughter has never celebrated Halloween in school before — I was particularly interested in the suggestions from their members on celebrating Halloween at school.  They write:

• Make suggestions to the teacher well in advance of the party.
• Set safe standards based on your child’s IEP or 504 plan (if established).
• Provide the snacks. It may be a small price to pay to know everything is safe.
• Attend the classroom party so that you can monitor the situation and resolve safety concerns. If you don’t stay for the entire party, at least stay long enough to check all of the food.
• Remember your child’s emotional needs and be careful about drawing unnecessary attention to his food allergies.

The last one is extremely important.  It’s the beginning of the school year, at a new school.  Drawing unnecessary attention to her allergies could make her uncomfortable.  So the reminder to tread carefully (while also taking necessary precautions to ensure her safety) is duly noted.

Kids With Food Allergies also has an excellent resource, “Halloween: Celebrate with Food Allergies and Have Fun Too.”   Great title.  I couldn’t agree more.  There are crafts, tips, recipes. Check it out!

If you have any suggestions how to have a great Halloween with food allergies, please leave a comment.

Tip 2 for Celebrating Halloween with Food Allergies:  Make sure that there are 1 or 2 homes in your neighborhood where your child can safely trick-or-treat.  Last year, one neighbor had Yummy Earth lollipops on hand.  Another gave our daughter a doll that she still treasures made out of a closepin.  Since I hadn’t discussed this with these neighbors in advance, their kindness touched me.  And my daughter was thrilled beyond belief.  You may want to consider talking with a neighbor or close friend to see if you can stash a safe treat at their house for when your child rings their doorbell.  It would make your child’s night, without putting pressure on your neighbors to come up with a creative solution.

I was pleased to see that Enjoy Life and Gina Clowes have written a tip sheet to help neighbors and friends think of ways to keep Halloween safe and fun for food allergic kids.  Way to go!  The key is getting the word out.

Since many holidays revolve around food, it can be tough to get in the holiday spirit.  For most families with food allergies, Halloween is the hardest of them all.  But Halloween is the one holiday I’ve got figured out.  My daughter loves it.  My husband and I love it too.  Over the next 2 weeks, we’ll share tips that have worked for our family to make this holiday safe and enjoyable.

Here is my number one tip:

Don’t shy away from Halloween: Make your child’s Halloween as special as possible.  We let her collect candy in the neighborhood (as long as the wrapper’s not orange), and then she trades the candy she collects for a treat bucket that I have prepared just for her.  All year long, my daughter says: “I feel sorry for other kids on Halloween.  They just get candy.  I get treats that are safe for me to eat plus new toys.”

Mind you, these toys aren’t anything big.  One “real” present (last year’s was a Webkin) plus tschotske/kitch that kids eat up.  I search for these gems in the off season, pick them up cheap, and pack them away.  To give you ideas, this is what her basket this year will look like:

on the non-edible side: a present TBD, Halloween stickers, puzzles, a ring, a pencil, a straw, and a “clacker”, and

on the edible side: Pringles Minis, Enjoy Life chocolate bars, Swedish Fish, pumpkin shaped cookies and Yummy Earth Lollipops (not pictured, but we really like them).

If you have any great tips for celebrating Halloween in a food allergy friendly manner, or questions you want to pose to me or other families raising kids with food allergies, please share them here.

Stay tuned for more tips!

I have been really enjoying your comments.  Please keep them coming!

To my Food Allergy Trauma post, Pam and Jennifer B. commented that they feel the need to be more protective than lax, because of their children’s young ages and/or the severity of their children’s allergies.  That makes perfect sense, on both counts.  Where I struggle, now that my daughter is in elementary school, is how to give her the freedom she needs (but luckily does not yet crave).  I am afraid that being overprotective may not serve her long term interests — it can be overly restrictive and deny her of opportunities she would enjoy.  But since I am more worried about the devastating consequences of being too lax, I often err on the side of being overly protective.

Some examples of where I waver from lax to overprotective:

Do I let her play outside by herself with other kids her age?  Depends who they are, depends how far out of my sight they go, depends how long they are gone.  More on that later.

Do I let her leave the house without an epi-pen?  Absolutely not is the right answer.  But I’ve found myself (especially in my sleep deprived state, of late) walking with her around the neighborhood –or even to a neighborhood park– without one.  Would I be furious if another caregiver did that?  Absolutely.  A double standard?  You bet.

Do I let her eat manufactured food without a disclaimer label (think Rold Gold pretzels or Teddy Grahams) or one whose disclaimer label isn’t what I’d like it to be.  (Most snack food is manufactured in shared facilities with dairy, if not tree nuts or peanuts, but I still allow her to eat original Pringles, Pretzel Thins, and Snap Pea Crisps.)

Amy’s comment on allowing her child to eat store-bought vanilla ice cream in her presence but not in the presence of others struck a chord with me.  I have been known to apply the same double standard on foods without a disclaimer label.  I somehow feel that if she eats it in my presence, I am more prepared/better equipped to deal with a reaction than a teacher, a friend, or a grandparent.   I realize it’s completely illogical and irrational, but if she ever needs an epi-pen — either I want to administer it, or I want her trusted allergist to do so in my presence.   I imagine that getting an epi-pen would be one of the scariest things that could happen, and I would want to be by her side to comfort her.

On the subject of neighborhood kids Rebecca commented on my Firsts Post with an interesting question:

I do have a question for everyone that has a child with life threatening food allergies: do you post any signs at your door?  We have an older child that had a friend come over and want him to play while he stood there eating a peanut butter cookie. Any Advice?

I don’t have any advice.  Am hoping some of you might help her.   And me as well.  Like Rebecca, I have had trouble educating neighborhood kids about food allergies.  They don’t understand why I won’t let her climb trees (or share her scooter) with kids eating cheese sticks.  They don’t understand why I say she can’t have a cookie because she’s allergic to milk.  (They vehemently protest that the cookies are milk-free … to which I reply milk chocolate and butter are both milk products … they continue to argue with me and look at me like I am crazy.  Repeat this loop a million times.)   I have tried educating their parents.   This approach sometimes works well, sometimes it does not.  I am still reluctant to allow my daughter to play without my supervision — in the neighborhood or elsewhere.

At what magic age should we as parents start to lighten up a bit?  I know that by doing so, she will have increased confidence to navigate the school cafeteria and sleep-away camp … aims to which I should aspire.  I dread the day.  Any thoughts or advice from those of you who have been there, or who dread it as I do?

I just saw an interesting article from ABC News: Can You Trust Again? Post-Allergy Trauma (hat tip, Gina Clowes at Allergy Moms).  I wanted to link to it, share some of my thoughts, and invite you to share yours.

I applaud author Radha Chitale for her unique perspective not often discussed in mainstream media articles about food allergies: the psychological toll that food allergies can take on the allergic child and on his/her entire family.

I thought that her quote by Jane Robinson (National Jewish Medical Center in Denver) encapsulates the pendular swing of our community.  “Some parents take the attitude that their child needs to live in the real world, that an attack is going to happen, just don’t know when and where”… “Others will tie themselves in knots to make sure it never happens.”  To her point, I would add that while some parents anchor themselves to these extreme positions (think guard dogs at school), others tend to bounce between these extremes with surprising and remarkable fluidity.  It may seem confusing to some on the outside when parents (like me) are totally overprotective one minute and somewhat more laissez-faire the next, but so is the nature of the beast.

I also found interesting the comment by Robert Wood (Johns Hopkins Children’s Center in Baltimore) that post-attack trauma depends on three factors: personality, severity of the attack and the circumstances of the exposure.   I believe that his predictors of post-attack trauma are also applicable to families worn down by years of food allergy fatigue:

Personality:  Allergy parents come in all stripes: proactive, laid-back, detail oriented, dreamers.  There is no one personality type that is best suited to avoiding short-term food allergy reactions and for managing food allergies over the long haul.  But I imagine that some personality types have more built-in coping mechanisms than others.

Duration: How long have you been managing food allergies?  Some things get easier with time and experience (reading food labels, or sending kids back to school, for example).   But there is the disadvantage of feeling burned out over time.

Severity: Families of children with severe and/or frequent allergic reactions may respond differently than those who have had fewer or milder reactions. I think personality may play a larger role than severity in food allergy fatigue - as some parents/children may get more fearful (or burned out) than others over time.

I invite you to share your thoughts.

I spent the past few days leading up to the Jewish New Year cooking like a maniac.  I prepared all the traditional foods that my family and other Jewish families have served for generations: brisket, noodle kugel, and honey cake.

Five years ago when I had a newborn at the high holidays, our special holiday meal consisted of sloppy joes.  Yes, sloppy joes was all I could manage to prepare that year.  I would have been well served to remember 5764 last week when ambition and adrenaline beat out common sense.   I don’t mind admitting that under normal circumstances, I am quite a good cook.  Not this year.  Brisket was tough.  Kugel was the wrong consistency.  Honey cake spilled over in the oven and fell apart.  I don’t know why any of that surprises me.  The baby is waking up every hour and a half at night to nurse.  When I put her down during the day, she cries.  I’m running on fumes.  Not an ideal circumstance for preparing traditional dishes I make but once a year.  My family was polite and appreciative, but I was pretty down about it.

Holidays are hard.  Especially since the cultural component (food) is such a big part of how I celebrated holidays with my family growing up.  Celebrating with others can be difficult.  Since we cannot eat the same food that they do, our “special” food always isolates my daughter from others.  Likewise, celebrating alone can be difficult: she misses the festive atmosphere of celebrating with extended family and friends.  Whether we celebrate with others or alone, I feel compelled to provide for her the same special holiday foods (that others can so easily buy) that are her cultural birthright.  Even if she doesn’t like them.  Which she doesn’t.

The only part of the Rosh Hashana meal she enjoyed was the apples and honey.

Next year, I’m tempted to start a new tradition: sloppy joes (or some equivalent comfort food of her choosing) and apples & honey.

I wish you and your family a sweet New Year.