Monthly Archives: September 2015

Annual update – long post

IMG_6285Every year we make a big trip to the Jaffe Food Allergy Institute at Mt. Sinai Hospital in New York City. We have been able to find good local allergists – who are the most practical to see for food challenges, pressing issues, and the endless school and camp form updates, but the chance to pick the brain once a year of one of the most prominent pediatric food allergists in the country, Dr. Scott Sicherer, is invaluable. We use these appointments to ask big questions: what should our next food challenges be, what food trials would Bubba be best suited for, what 504 accommodations should we seek when Bubba starts public school next year, what could be causing Bubba’s mystery hives, are we meeting her nutritional needs, etc. These appointments are vital to us as sources of knowledge and also for allergy-mama anxiety. Food allergies are hard. You want to fix it, but there really is no ‘fix’. Avoidance and preparedness for accidental exposure are the only real protocols. But all mamas want to fix things. It’s really really hard to just accept that your kid got the short stick. I can satisfy some of that drive with these appointments. They help me feel that I am doing everything I possibly can for my kid.

This year’s appointment was a mixed bag as usual. We added a couple new allergies (salmon and birch) which is always a bummer. Bubba had recently gotten hives on two different afternoons after I fed her a salmon dip. I suspected the salmon but she had previously tested negative for it. At the appointment we did a small series of skin-prick tests and she came back positive. I know losing salmon isn’t the end of the world, especially in the diet of a four-year-old, but adding anything to our avoidance list is very frustrating.

The addition of a birch allergy is interesting. Seasonal allergies typically don’t appear in children until ages 4-6. Bubba had previously tested negative for birch, but she was only two at the time. A birch allergy can cause oral reactions to foods that are cross-reactive. This may explain Bubba’s transient oral reactions to celery, carrots, bell peppers, raw tomatoes, and fennel. I’m hoping it will also explain away cumin, but that is less likely given her higher IgE number. A birch allergy can also cause a cross-reaction with peanut. The peanut protein Ara h 8 is so similar to birch pollen that those with a birch pollen allergy will often test positive to peanut and may have mild pollen-like allergic reactions upon ingesting peanut. That is why component testing is so important. We know, through component testing, that Bubba has a ‘true’ peanut allergy that is more often associated with anaphylaxis. But I now have big questions about whether Bubba is allergic to other legumes or if these are merely cross-reactive with birch (or peanut). She outgrew soy, eats black beans, and passed a food challenge for chick peas. She still has white beans, kidney beans, fava beans, and lima beans on her avoidance list. Imagine if we could strike four more? I also wonder if new and emerging seasonal allergies could explain her eczema flare ups and mystery hives last spring, over the summer, and this fall. Lots to think about.

The other bummer was that Dr. Sicherer doesn’t think Bubba would be likely to pass a baked milk challenge and therefore he wouldn’t support her doing one, absent much lower IgE numbers on a current blood test. Sigh. I was really hoping to start her on baked milk therapy, similar to what we’re doing with egg.

Positives from the appointment included the chance to consult again with a nutritionalist who gave us a great recommendation for a calcium and Vitamin D supplement, encouragement to give Bubba a daily probiotic (we chose this one from Mercola), and some very exciting negative skin-prick test results! Bubba tested negative for lentil and green pea. We will follow up with blood testing. If Bubba is negative for pea and can pass a food challenge, that would be HUGE. Pea protein appears in a bizzilion vegan foods that would otherwise be great milk and egg substitutes for Bubba. She had two anaphylactic reactions to peas before the age of two and hasn’t been exposed since. Fingers crossed!

Because our dream is to get Bubba in a clinical trial that can offer her some level of desensitization to some (any!) of her allergens, it’s important to us that Bubba always associates these trips with fun, adventure, and a chance to have special time with me. Although we were at Mt. Sinai for a couple hours and had some testing, the bulk of her day was spent riding trains, visiting playgrounds, riding a carousel, and at the zoo. She even got to eat out at a restaurant called Chick Pea after I cleared it ahead of time. A pretty exciting day for a four-year-old!

Food Allergy Friendly Halloween Ideas

teal-pumpkinThe number one way you can show food allergy families you care is by participating in the Teal Pumpkin Project. The idea was created in 2012 by Becky Basalone, executive director for a local food allergy support group affiliated with FARE. The idea is simple, by posting a sign or placing a small teal pumpkin at your house, you can alert those with food allergies or sensitivities that you are offering a candy-alternative. Inexpensive items can be found at dollar stores, office supply stores, Oriental Trading Company, Walmart/Target, etc. Simply place the items in a separate bowl to offer instead of or in addition to traditional Halloween candy. Such a small gesture can mean the world to an allergic kiddo (or even a picky food eater!).

Here are some non-food ideas:

  • Glow Sticks
  • Halloween-Themed Pencils and Erasers
  • Stickers
  • Mad Libs
  • Rubber Duckies
  • Wiggly Eyes
  • Spooky Plastic Spiders
  • Whistles
  • Temporary Tattoos
  • Nail Polish
  • Bubbles
  • Goofy Glasses
  • Playdough
  • Stamps
  • Pens or Crayons

As food allergy parents, there are many things we can do to help keep our kiddos safe on the big night:

  1. Play host to a Halloween party or post-trick or treating get-together. By controlling the environment, you can influence the what, where, and when of candy-eating. You can also offer lots of fun Halloween-themed games and activities to take a bit of the focus off the food. Have a toilet paper mummy-wrapping race, a Monster Mash dance party, or costume contest. Create a photo booth with Halloween-themed props. Pin the wart on the witch or the bones on a skeleton. Paint or carve pumpkins. Tell spooky stories around a fire pit.
  2. Plan to trick or treat with your children. Make sure to carry your allergy medications/inhalers including epinephrine. Bring a charged cellphone, flashlight, and wet wipes for easy hand wiping if necessary. Having a few safe treats to eat along the way is fun too!
  3. Talk with your children ahead of time to create a candy-swap or trade-in system. No candy should be eaten without the approval from mom or dad. Reading ingredients on the road is complicated; it’s dark and most snack-size treats do not have ingredients listed on them because they’re not labeled for individual resale.
  4. Consider washing hands and wiping down candy packages when you get home if you have concerns about candy residue from other children.

Allergy-friendly candy:

Our kids swap out candy that is unsafe for Bubba. Big Girl gets to keep some of her nut-free chocolate, but that is eaten separately and under supervision so we can clean up afterward. Every child (and allergy) is different. Bubba’s allergens most likely to be in Halloween candy are: peanuts, tree nuts, dairy, eggs, sesame, kiwi, and/or mango. We read labels every time, but here are candy ideas that are usually  safe for our family:

  • Starbursts
  • Skittles
  • Airheads
  • Charms Blowpops
  • Haribo Gummi Bears
  • Dum-Dums
  • Jelly Bellies
  • Fruit Snacks
  • Panda Soft Licorice, Twizzlers, Red Vines
  • Jolly Ranchers
  • Hot Tamales
  • Smarties
  • Sour Patch Kids
  • Pez
  • Now and Laters
  • Swedish Fish
  • Mike and Ikes

For those managing different and/or more allergies here are some great companies offering allergy-friendly treats:

Wondering what to do with all that unsafe candy? Donate it! Our service members and veterans would love to know others are thinking of them. Click here to learn more about Operation Gratitude.

Back to School Food-Allergy Anxiety

The start of a new school year can be stressful for food allergy parents. Heck it can be stressful for all parents. New teachers, new rules, a new environment. We’re lucky that Bubba is back at her same preschool. One that has been extremely accommodating, supportive, and eager to learn when necessary. Her school is nut-free, birthday celebrations are food-free, and she brings her own snacks so the risk of her actually ingesting an unsafe food is reasonably minimal. The beginning of a relationship with a new teacher is always a delicate one however. My job is to advocate for my child. To do this most effectively, I need to create an ally while also being firm in what precautions must be followed to keep my kid safe. I think too often food allergy parents can mentally prepare themselves for a ‘fight’ before the school year has even begun. That can be based on fear or on prior fights they have actually endured. I think the best approach is to assume a teacher is the person ready to love and protect your child as much as you do. Teachers are often underpaid and under appreciated. They usually entered the profession because they love children. If you can approach your relationship with your child’s new teacher from this perspective, all that’s needed is information. A teacher doesn’t need to be reprimanded if they didn’t follow protocol – they need more information about the potential consequences of an unsafe environment. If your child felt excluded because of an activity or treat in the classroom – the teacher needs to know about those feelings. Your job as an advocate is to provide information and offer whatever support you can. Maybe the teacher could use another set of eyes during lunch time and needs you to push for an aide with the administration. Perhaps other families are having trouble remembering a new no-nut policy and you could draft a letter to go out to parents. Are other kids in the classroom making your child feel different? Maybe you could donate a book about food allergies to your school’s library.

When I met with Bubba’s teacher at the beginning of the year, I discovered that she had been trained on the Epi-pen, but not the Auvi-Q. This is the epinephrine auto-injector that we’ll keep at school so she needs to know how to use it. I offered a quick training at orientation, but then approached the school directors about when we can do a school-wide training. I said I would be happy to donate our training devices as well as our expired Auvi-Qs so everyone can get a chance to practice hands-on. I also wrote a letter to Bubba’s teacher explaining a bit more about her allergies and reactions. I hoped the information would be easier to digest when not busy trying to speak with all the other new parents.

Bubba is contact allergic to milk and eggs, but we have rarely had issues. We keep milk and eggs in our home, but thanks to diligent cleaning, she has only had small contact reactions a few times (all of which were resolved with prompt skin washing). I was a bit nervous on the first day of school when Bubba arrived in the classroom and the morning preschool class was finishing lunch. One little boy was finishing his Pirate’s Booty and the thought of cheese dust all over everything made me anxious. But, I know I informed Bubba’s teacher about contact issues and how to treat them. I also know we discussed starting the school day with hand washing. Bubba would be in a separate area of the classroom until lunch was cleaned up. So I chose to take a deep breath and trust that Bubba would be safe. That can be very hard to do as an allergy parent. Letting go, even a little bit, and trusting in the safety net you have built around your child.

IMG_6187

Second day of school.

Of course there are challenges to this professed zen-like approach. Bubba had a couple small itchy bumps on her arm after her first day and told me she thought she had hives at school. It could have been random skin issues, including contact dermatitis. Regardless, we had a big talk about always telling a grown-up if she feels funny or itchy and why that’s so important. After the second day of school, she broke out in hives all down the backs of her legs. I tried washing her off, but she began crying from being so itchy so I quickly gave her Benadryl. What does the anxious food-allergy mom think? Did her bare legs touch a chair or surface covered in milk residue? Is this a contact reaction? I will need to discuss washing down all surfaces at school after children have eaten. What does the trying-my-very-best-to-be-rational food-allergy mom think? If the hives were from school, that’s weird that she didn’t get them at school. Contact hives are usually fairly quick. Did she eat anything new? Hmmmm. She tried a new homemade salmon dip both days. She hasn’t eaten a lot of salmon before – maybe only a few bites a couple times. Has she been tested for salmon? Oh boy. Is she fighting a bug? Could these be viral hives? Could they be idiopathic – hives for no apparent reason? Our allergist would probably say that might be as likely as anything. Sometimes there is no apparent cause for hives.

Whatever the cause, I will need to have a rational, reasonable, and positive discussion with Bubba’s school. A little more education about food residue and the potential for contact reactions could help prevent problems in the future for her and/or for another allergic kiddo who is more sensitive. The teachers and administrators are on my team. We all want to keep this little one safe.