Tuesday, November 11, 2008

What to Do First? or Peanut Allergies 101 - Part 1

A reader left a great suggestion for a topic this week. Thanks Sean (next time leave your email/site so I can link to you)!

Here's what he wrote:
I'd love to see some sort of summary post for parents of newly diagnosed children. Call it Peanut Allergies 101.

When our daughter was diagnosed, my first question was "What do we need to do first?" I found that most of the resources online seemed to assume that the parent already knew what to look for, but we didn't. Did we need to bleach the whole house? Could we still eat at restaurants? What did we do if a package didn't make any reference to peanuts at all? That sort of information was surpringly hard to find.

Even now I'm still learning things -- one of your recent posts mentioned beauty products in passing as if was common knowledge that they could be dangerous, but that had never even occured to me.
He's absolutely right! I remember getting the initial diagnosis and thinking "what do I do now?" Well, hopefully this post will help a bit. I've compiled a top 10 list of things to do when your child is newly diagnosed.

This post will include items 1-5 in no particular order. I'll talk about 6-10 in another post this week. And, as always, feel free to leave a comment to add to the discussion!

  1. Clear (or peanut proof) Your Home
    In our house we cleared out the whole place of anything peanut related or tree nut related, including anything that contains peanuts or tree nuts, may contain peanuts or tree nuts, or manufactured on equipment that processes peanuts or tree nuts. Most allergists recommend that peanut allergic (or PA for short) kids avoid tree nuts due to the cross contamination possibility. So we cleared the house of both. Our thinking was that we wanted one place in the world that B would be safe to roam around without getting into anything that could kill her. After we threw things out, we made sure any receptacles that contained peanut/tree nut items were thoroughly washed in the dishwasher.

    Now if your child has multiple allergies, this is more difficult. You may not want your whole family to go without milk for instance. Each family is different! If you don't want to rid your house completely of peanut products, then make sure they are segregated from other food your peanut allergic child comes into contact with. You may also consider using separate utensils/pans for preparing foods your child is allergic to to reduce the risk of cross contamination.

    But in our case, it was just easier to clear it all out. Why take a chance?

    And don't just clear out your pantry. Be sure to check all the products your child comes into contact with including soaps, household cleaners, and YOUR personal grooming products (lotions, makeup, etc.). You don't want your child to have a contact reaction.

    Bottom line: read every label you come in contact with. Peanuts and tree nuts show up in the most surprising of places. It will become second nature to you, don't worry.

  2. Get an Epi Pen (or Twinject) for Every Conceivable Place Your Child Will Be
    The fact of the matter is that epinephrine pens can save your child's life, so they need to be wherever your child is. And don't just get a single epi pen for your child. Put an allergy kit together for every place your child will be: home, school, daycare, grandparents, other caregivers homes. These should have your epi pens, benadryl, and emergency contact information. I also keep 2 pens and benadryl in my purse with me at all times. And I have a pack that stays by the front door, so if my husband takes off with B on an errand he can grab it on the way out.

    The most important thing about epipens: DO NOT LEAVE THEM IN YOUR CAR OR IN THE ELEMENTS IN ANY WAY. EXTREME HEAT AND COLD CAN RENDER THE MEDICATION INACTIVE. And what good is an epipen if it doesn't actually work?

  3. Talk to Your Child's School and/or Daycare and/or After School Care
    Talk to the people that are caring for your child and explain your child's diagnosis. Let them know what your child can and cannot have moving forward. Make sure they have your child's epipen and benadryl in a secure (yet accessible place - NOT locked up in an administrator's office).

    You may find that some daycare providers will downplay the allergy (yes, seriously). In some cases they've had other kids with 'allergies' when they are actually just 'intolerances' (yes there is a difference) where the parents had loose standards so they may act like you are overreacting. Let them know that other parents have other comfort levels and that these are yours for your child. Let them know that a little preparation will prevent a call to 911.

    Let them know how to identify an allergic reaction and what steps they should take should a reaction occur. Here's a handy one pager that can help.

    If your daycare has snacks, ask to see a list of what they serve. If there are items on the list that are questionable, see if you can help them find safe alternatives. In my experience, you catch more flies with honey than vinegar. If you approach this as a team effort, the teachers will appreciate it and you'll get more accomplished. If they serve peanut butter, ask them how they plan to keep your child safe. They may have an allergy table, or they may have the child sit on the opposite end of the table as the child eating it. In any case, you can request that all children wash their hands after eating so the PB stays contained, and doesn't end up on the communal toys.

    If your daycare celebrates birthdays with food, you might ask if you can leave a bag of safe treats with them so you know they will always have something safe and will not be excluded from the celebration.

  4. Talk to Your Child
    When your child is diagnosed, you may have an opportunity to talk with them about their diagnosis. There's a fine line between scaring the heck out of your child and being honest with them about the severity of their allergy. But it is imperative that you teach your child to never eat anything unless mommy or daddy says it's ok, or to ask before eating anything.

    Your child may feel stressed and excluded. That's normal. But keeping an open dialogue with them will help. Just by talking to B about her day, I've found out all sorts of things about how they REALLY handle allergies at school. It's been eye opening!

  5. Find a Support Group for Yourself
    If you are in a metropolitan area (or heck even suburbia), chances are there is some sort of allergy support group. I started one (we have physical meetings and an online yahoo! group - join us if you'd like). If nothing else, visit www.peanutallergy.com and cruise around the boards. Having someone else out there who gets what you are going through is so helpful, believe me. You will go crazy from anxiety at first (it eats you up!) so do yourself a favor and find someone who can relate - it will make a huge difference in your life. And if you can't find anyone, you've always got me (seriously - if anyone wants to email me directly, go for it!)
Well, that's a start, now isn't it? And I am far from done. Look for 6-10 this week!


Elaine said...

This is great... I loved the one pager thing too. I did not have that.

Thank you

Sean said...

This is great stuff, exactly what I was hoping for. Thanks so much.

Michelle said...

Thank You, this was very helpful! Can't wait for 6-10.

Candice said...

Did you do Part 2? I was looking...don't know if I missed it...

I appreciate this list. It's exactly what I was looking for when Graham was diagnosed. I love your blog!