Kids Food Allergies Blog

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.

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.

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?

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.

I spent the afternoon of Tuesday, August 12 frantically baking a birthday cake for “the new baby” that the whole family could enjoy. On Wednesday, August 13, I gave birth to a second daughter.

Little did I know that, at the same time I was baking, the good folks at Divvies were sending my family a box of beautiful, delicious cupcakes that would render my frantic efforts unnecessary.

When I got home from the hospital, we had a really great birthday party — and a birthday cake taste test. Three participants. One all-powerful judge.

So, which tasted better? The homemade cake (pink icing) or the Divvies cupcakes? “I like them both the same,” says daughter #1. “Does that mean I get to eat 2 desserts?”

Thank you, thank you Divvies for filling this market need for milk-, egg-, and nut-free cupcakes. We loved the wonderful treats. Thank you for sending them. We’ll be ordering from you again soon.

I’m not sure whether I’m alone in this, or whether I have company. So, I’ll put it out there. I’m really worried that the hospital staff will give milk formula supplements to my newborn in the hospital nursery. There. I said it. It happened to my first born five years ago. Different hospital, different time, different level of awareness? I am not trying to blame her severe milk allergy on early milk exposure. But, at the same time, I’ve worked so hard over the past 9 months to prevent food allergies in baby 2 that I would hate for a few bottles of formula to undermine my efforts in any way.

Since my husband and I will be unable to keep a watchful eye over the baby at the nursery 24/7 to prevent formula supplements, I did the very next best thing. I made a sign to hang on the baby’s bassinet. I hope it is effective.

On to fear 2: The baby books say I will need five servings of calcium/day to help my milk come in. I plan on taking calcium supplements. But I would like to meet at least part of my daily calcium requirement from a natural food source. There’s no way I can tolerate that much milk, regardless of the baby and food allergies. I can’t stomach fortified rice milk straight up either (a texture thing). But I have come to enjoy soy quite a bit. Soynutbutter. Soy cheese. Soy yogurt. Chocolate soy milk. Tofu even. How much is too much?

If you have any experience combating either of these fears, please leave a comment to tell me your story.

We’ve all been there. Just thinking about the spectrum of terrible things that could happen to your severely food allergic child can be scary enough to make you want to:

• prohibit them from leaving the house (going to the playground, the pool, or a baseball game)
• homeschool them ad-infinitum
• hold them close and never let them out of your sight.

It takes great courage for parents of severely food allergic children to come to grips with these fears and keep them at bay — for our children’s sake — so that they do not internalize our fears and become paralyzed by them. A healthy dose of respect for our children’s allergies is not only appropriate, but smart — because it can help to keep them safe. But empowering them to live safely while enjoying the world around them is even smarter, and healthier for your child in the long term.  Too much sheltering can create fearful children who are afraid to live life to the fullest.  This saddens me to no end.

These thoughts are on my mind because of two contrasting items I just came across.

• Peanut Free Mama points us to a wonderful NPR piece and a unique analysis of that audio clip essay and how it applies to parents of food-allergic kids. I highly encourage you to read and listen.
• KRDO.com posted a news clip about guard dogs for food allergic individuals. I had never heard of this before. While I feel this mother’s pain, I also feel for this child who is growing up thinking that the world is so scary that it cannot be navigated without assistance. I sometimes worry that we use food allergies as an excuse to be overprotective and not allow our daughter to try things that she can handle. But I never want her to think of her food allergies as an impairment that makes her different from (or dare I say inferior to) her peers in any way. And that’s why the guard dog solution frightens me. I’m concerned that the guard dog serves as a constant reminder to this child and to those around her that food allergies are a debilitating disability/weakness that prevent the world from being a joyous place. I hope that as she grows older, things will get easier for her and her family.

I’d welcome your thoughts on this.

I just came across a really neat post that I thought I’d pass along, What I Wish I Knew…Food Allergy Lessons I’ve Learned.

No matter where you are on your food allergy journey — this post reminds us that some folks get it better than others: Seek out folks and environments that are supportive. It also highlights that while none of us aspire to be members of the “food allergy club” — the author has met (and you will too) a lot of extraordinary moms who will offer friendship and support along the way.

I’d like to add a couple of lessons I have learned — and encourage you to use this forum to do the same.

Food Allergies are a Moving Target Over Which You Have Limited Control.

After our daughter’s diagnosis nearly 4 years ago — we resolved ourselves to be super strict about avoiding milk and eggs (the only foods, at the time, to which she was declared allergic). In this way, we convinced ourselves, we could ensure that she would outgrow her allergies by age 3. Despite our best efforts, it didn’t work out like we’d hoped. She is still allergic to milk and eggs, and has since added peanuts, tree nuts, fish, shellfish, and sesame to the list. Because her allergies have changed — and because manufacturers change ingredients (or disclaimer labels) — there are some foods she could eat 2 years ago that we can no longer buy. (The one that still gets me is Barbara’s Bakery Snackimals Animal Cookies, which don’t necessarily contain peanuts, but are manufactured on equipment shared with peanuts, tree nuts, milk, and eggs.)

Not only can the foods and allergies change over the years — so too will your approach. As your child grows up, the way you talk to your child about food allergies will change. (I imagine this evolution in the following progression: constant vigilance over an infant/toddler who cannot understand, to setting clear rules and limits for a preschooler, to empowering a school-aged kid, to I’m not sure what for a rebellious teen. Haven’t gotten there yet.)

Other People Will Surprise You

While I am routinely baffled by the insensitivity of many — I have likewise been touched by a select few who have gone out of their way to provide a safe and happy environment for my daughter. Two examples from this year: her teacher and a classmate’s mom.

Her teacher this year was fabulous. From our initial conversation — she took me seriously in a way no one else has. She removed all potential allergens from the classroom: even ones I didn’t think of, such as acorns and a doll bed finished in a nut-based lacquer. She didn’t shy away from fun activities because of my daughter’s allergies. She found ways to make fun things safe. Over the year, this wonderful person has been more than my daughter’s teacher, she has also become my trusted friend. She is a testament to the fact that food allergy parents and teachers do not have to be adversaries.

More kindness came at an unexpected place: a birthday party. The mom of one of my daughter’s classmates went to considerable trouble to make sure that my daughter could eat everything at her daughter’s birthday party — including the cake. Everything was delicious, and I’ve never seen my daughter happier.

Your Child May Surprise You — and You Will Surprise Yourself.
Though not even 5, my daughter is mature beyond her years. And she really owns her allergies: understands them, tries to educate those around her, and is pretty good natured about the sacrifices she needs to make to stay safe. I am very proud of her. When she was diagnosed with allergies — so many things seemed overwhelming. What I thought would be most difficult has not turned out to be so hard: removing allergens from our diet, not frequenting many restaurants, and not being able to leave her with many babysitters. These circumstances have actually brought the three of us much closer. And while I am not thankful of the root cause, I am extremely thankful of the end result.

Most parents of food allergic children have learned how to manage food allergies in the home. But what happens when your child leaves home, or when you entrust his/her care to others? Where and under whose supervision do you think an allergic reaction is most likely to occur?

• Under your supervision at a park, restaurant, or on vacation. I don’t worry so much about parks anymore. Over many years of playing at the park, we have learned some tricks. (My favorite tip: use your own picnic blanket instead of picnic tables. Or bring a vinyl tablecloth if you want to use a picnic table.) Restaurants are tough. I’ve heard some real horror stories. We stick to restaurants we’ve been to many times (and know what’s safe on the menu) - and always remind the kitchen about food allergies when ordering. For practical, smart tips to minimize the risk of food allergy reactions in restaurants, I recommend that you check out the post, “Top 8 Tips for Eating Out with Allergies” on the About.Com Food Allergy Blog. Vacations are more complicated. More on that soon. We’re headed to San Francisco in a few weeks.
• Your spouse. The post, “Do You Trust Your Husband” in the blog, Every Day With Food Allergies, had me rolling on the floor laughing. I’m sure many of us can relate. It took me a good four years to let go — but now that I do, it’s pretty great for everyone. I pack up safe food and they spend the day at the park, the baseball stadium, the bowling alley, or wherever else they want to go.
• Babysitters. In her post, “Leaving Your Food Allergic Kids With A Sitter,” ModernAllergyMom recently asked her readers how they manage to leave their kids with someone else. Given that I’ve only used one babysitter in 4 1/2 years — I’m not a good one to ask. But since my child and the sitter would be inside my house, which is allergen free, I could probably lighten up on this.
• Grandparents. Haven’t left her alone at their house either. Okay, so I have some control issues. But I don’t think I’m alone in this. Many parents of food allergic children have justified concerns about leaving food allergic children with grandparents — just ask Dr. Robert A. Wood.
• Friends. Birthday parties and playdates are opportune venues for food allergy attacks. As a parent, part of you feels the need to hover - but part of you wants to let your child be a kid. The first time my daughter was offered food at a friend’s house (when I wasn’t by her side) — she was 2 1/2. Instead of eating it, she ran to my side in tears to show me the offending tortilla chip. The second time a friend offered her food (milk chocolate candy made in a factory that processes nuts) - she had been better coached in how to respond and she had more experience dealing with her allergies at preschool. Without tears, she simply told her friend that she couldn’t eat the chocolate because she might be allergic to it. Atta girl! I still hover at birthday parties - can’t help myself.
• School. There are so many fronts for concern: Supervised activities (snacks, lunch, buses). Or those pesky unsupervised activities: peers innocently (or not so innocently) offering your child forbidden foods or exposing your child to allergens while not in the presence of adults. Some optimists feel that better education will reduce these threats. In the realm of supervised activities, I wholly agree. I am less convinced about the role of education in the unsupervised realm.

Realistically, a reaction could occur in any of these scenarios — and many others. But it gets tiresome not being able to trust anyone. And as she grows more mature and is better able to take ownership of her allergies — I imagine these fears will lessen. Perhaps others will take their place. Like sleep away camp, dating, and prom.

Any tips for handling any of the situations listed above? Anything I’ve left out? What do you fear most?