Desensitization: It's not just physical

Desensitize. It's a big word that allergists use to describe what's going on in your kid's body during OIT. OIT is flying under the body's radar, teaching it not to freak out when it meets an allergen. But for OIT to be successful, desensitization can't just take place in your kiddo's body-- it's got to happen in the hearts and minds of your entire family. While the mechanics of OIT are purely about physical desensitization, OIT will never fully set you or your child free until you experience an EMOTIONAL desensitization to your kiddo's allergen.

Thank you Gail Reynolds Frank for letting us use this graphic!
I first read the term "emotional desensitization" on the Private Practice OIT Facebook Group.
It's stuck with me ever since as I see families struggling to cope with their new found freedom in OIT.

Let me explain what I mean. When your kid became allergic, his body was sensitized to his allergen-- for whatever reason, his body decided to make antibodies against harmless food: peanuts, eggs, milk, wheat. Those antibodies planted themselves in cells that are just waiting to have an allergic reaction party, and as soon as your kiddo eats his allergen, it binds to those antibodies and the party (or not so much of a party for us) is on. Allergic reaction central.

When your kid became sensitized to that allergen and had a reaction, you became emotionally sensitized to it, too. Can you smell peanut butter from 100 yards away? Do you cringe when you see someone break out a P,B&J for their kid? Are you terrified of your kiddo having another reaction? Are you afraid to Epi if he does? Are you distrusting of chefs at restaurants and labels on food? You are emotionally sensitized to your kiddo's allergen. And during the life of strict avoidance, that's usually a good thing. You're on high alert all the time. You read all the labels. You wipe down all the restaurant booths. You bake all the cupcakes. You are doing what needs to be done to keep your kid safe. You are being a good parent.

Does this picture creep you out?
If so, you're emotionally sensitized to peanuts!

But then you hear about this thing called OIT, and all of a sudden, you start to think that being a good parent just might mean getting this treatment for your kid. But then you are stuck, because you are SO afraid. You have a hard time wrapping your head around giving your kiddo the very thing that you've worked so tirelessly to avoid for so long. And that's exactly when you need to start the EMOTIONAL desensitization process.

How do you emotionally desensitize yourself and your child to their allergen? Much in the same way you physically desensitize: one small step at a time. Below is a list of steps you can take to help you in your emotional desensitization process.

Steps to take emotionally BEFORE you begin OIT:

1) Arm yourself with information. Knowledge is power, and it can help you overcome your fear. Learn what you can about OIT, especially about OIT starting doses. I think some people envision the doctor feeding their child a chunk of peanut on the first day, when in reality, it takes MONTHS to get to that chunk. Your doctor's starting dose wasn't pulled out of thin air-- there are studies about how much of an allergen it takes to elicit an allergic reaction. Read up on one or two of them, and then know that your doctor is starting WAY lower than the amounts in those studies.

This is one of my favorite graphics.
OIT starts with MICROgrams of an allergen.
That's REALLY, REALLY, TEENY!

2) Join a support group. This one can be a double edged sword. There are some great national OIT support groups, OIT 101 and Private Practice OIT are two of the most popular ones. There are also a slew of local, doctor specific support groups. I admin a support group for Dr. Silvers' patients: Texan Allergy OIT Support Group. Ask questions. Tell them you are afraid-- here's a tidbit-- they were afraid before they started, too. Listen to what more experienced OIT moms have to say. There's one caveat about joining a support group: if you focus too much on people's reactions and side effects to treatment, it can make you more anxious. Just know that people usually post in groups when they need support, and not always when things are going well. Trust what your doctor has to say about reaction rates and scroll on by reaction posts if you need to.

You know your OIT doc is beloved when you
and other patients work together to make him this :).
You can join our Texan Allergy OIT Facebook Group by clicking here.

3) Find an outlet for stress. Maybe it's exercise. Maybe it's mindless TV. Maybe it's a good conversation with Jesus. Do whatever helps you de-stress.

4) Go see a professional. If you've tried all the things above, and you are still paralyzed by fear, then go get some counseling, maybe even some meds. You won't be the first OIT parent on Xanax, and you certainly won't be the last.

Steps to take emotionally DURING* OIT:
*Please consult with your doctor about when it may be appropriate to take the following steps-- the timing will be different for each doctor's comfort level. Some doctors may not want you to try any of these things until after your child graduates OIT, others may let you try them at various stages in the process.

1) Allow your child to TOUCH their dose. I know it's tempting to pick up that little peanut piece and feed it to them, especially if your child has a history of contact reactions, but touching the dose can be very emotionally desensitizing for both you and the child. Ask your doctor when it might be time.

2) Allow your child to sit at the "regular" table at lunch. This slice of normalcy is so healing for kids. They've been excluded for so long. Let them sit with their friends whenever your doctor says they are ready.

3) Allow the allergen back into your home. Let your spouse eat a peanut butter sandwich. You know they've been dying to since your kid was diagnosed.

4) Shed the peanut free classroom. OIT doesn't just free our kiddos, it frees everyone they come in contact with!

5) Allow your child to eat a food made in a facility with their allergen. Many docs allow this freedom for nut allergies at just a few nuts. Be sure to ask your doc when he or she thinks your kiddo will be cleared for cross contamination.

Cross contamination deliciousness!!

Steps to take emotionally AFTER OIT graduation:

1) Go have ice cream at an ice cream shop. Don't even tell them you have allergies. Be a normal person. I know, it's weird.

2) Donuts. Do I even need to say more?!

So this happened ;).

3) Go out to eat. Read the menu. Order whatever you want. You no longer need to be on a first name basis with the manager or chef. It's AMAZING.

4) Go to a "high risk" restaurant like Texas Roadhouse or Five Guys where they serve peanuts in the shell. If you're on a free eating protocol, let your kid eat a few.

5) Let your kid eat at a friend's house without worrying about what's in the food.

6) Attend a potluck. Let your kid eat whatever's there.

7) Fly on a Southwest plane and board like everyone else. Watch in amazement as everyone eats peanuts.

Perhaps the ONLY benefit of having a peanut allergy was pre-boarding with Southwest.
 We are happy to give up our pre-board slip for FREEDOM!!

8) Live a normal life like you did before food allergies. After all, this is the goal of OIT! Enjoy your freedom!!

Just like the physical desensitization during OIT, emotional desensitization doesn't happen overnight. Take your time. Allow yourself room to research and learn about OIT. Schedule a consult with an OIT allergist just to hear what he or she has to say, and then when you're ready, begin OIT. I promise you won't regret the decision. OIT heals: both physically AND emotionally.