Growth

Check out these pictures of Brendan and Dr. Silvers taken 18 months apart.

I just can't even with how much he's grown in 18 months!

 That child has grown like a weed. Dr. Silvers says Brendan's not allowed to catch him. I don't think that will be a problem since we're not exactly gifted in the height department around here ;).

We've all experienced way more than physical growth since this whole OIT journey began, however. Brendan's a teenager now-- going to events with the youth group at church where I have no idea what's going on much less what food they are serving-- buying his lunch at school when he forgets to pack his own-- eating donuts at band events without a second thought. I am so glad we pursued OIT before the teenage years. He's got a level of freedom that wouldn't have been possible pre-OIT. We recently went on a cruise and let the kids roam free, connected to us via walkie-talkies. The boys' favorite activity?! Hitting up the buffet for extra dessert after dinner. It's the little things that add up to one HUGE improvement in Brendan's quality of life.

Desserts, desserts, and more desserts!

His little brother's grown, too, although he's struggling to keep up with Brendan's teenage growth pace. Aidan packs himself a PB&J sandwich for lunch at least once a week these days. He no longer chooses to avoid foods out of fear that he might somehow come in contact with his brother and cause him to react.

Little brother, who doesn't get nearly enough press on this blog,
obviously enjoyed the cruise food, too.

Andrew and I have grown, too, not up, and maybe just a little bit out, if we're being honest with ourselves. I've gone back to school full time to pursue a career I never would have dreamed of taking on before Brendan completed OIT.

My first day of school selfie!

 Brendan's OIT both inspired me to become a physician assistant and freed me up mentally and emotionally to go for it. Before OIT, I needed to be 100% accessible to Brendan-- I attended every class party and always brought the cupcakes-- I went on every field trip and made sure my boy got the right sack lunch. Now, I can actually step out of the helicopter mom role that food allergies forced me into and pursue a dream of my own. And Andrew's been there to support me every step of the way-- growing and learning how to take over roles that were traditionally mom territory in our house.

It's been an amazing year of growth for all of us since Brendan graduated OIT. I knew OIT would have a profound impact on him, but I didn't realize how much it would touch our entire family. I am quite certain it's one of the best decisions we ever made for our family. It's helped us all grow in ways we could have never imagined.

Us.

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.

Hidden Peanut: Creative Dosing Ideas

Hidden Peanut. Those words used to strike fear into my heart. Remember when the nation's cumin supply was tainted with peanut flour? Fun times. But now that we've completed OIT, "hidden peanut" is exactly what we're looking for.

The majority of OIT kiddos don't like the taste of their allergens. Is it the body's natural defense against them? Is it psychosomatic because they've been instructed to avoid them for so long? Is it simply because they never developed a "taste" for them? We don't know those answers, but we do know that many kids need to camouflage those peanuts to get them down the hatch. I have listed some "creative" dosing ideas below for those of you who are at the end of your peanut rope, hanging on for dear life, struggling through your kiddo's daily doses. Special thanks goes to members of both Private Practice OIT and Texan Allergy OIT Support Group on Facebook who have shared these ideas over the years (I definitely "stole" a few-- I hope you don't mind!)!

1) Peanut candy. Peanut M&M's. Reese's Pieces. Reese's Peanut Butter Cups. There are many options. You'll have to discuss conversions with your doctor. Remember that the protein content on any item is the ENTIRE amount of protein in the item from ALL PROTEIN SOURCES, so you can't just do a one to one conversion here-- not even for the M&M's.

This is the size peanut M&M bag we buy now. Regularly. It's still mind-blowing.

You've tried all the candies and your kiddo hates them, OR your kiddo can't eat the candies due to tree nut cross contamination, OR your allergist just doesn't like using candy for dosing.  What's a mom to do? Here are some other suggestions:

2) Stick peanuts or peanut pieces into Rolos. This also works with other nuts. I have been able to cram up to three peanuts inside a single Rolo.

The Rolo trick works with hazelnuts, too!

3) Crush up the peanuts and mix them into a small amount* of mint chocolate chip ice cream.  Frozen items often dull tastes, combine that with the strong flavor of mint, and the crunchiness of the chocolate chips, and your kiddo won't even know there are peanuts in there.

We tried this mix-in with peanut flour.  I think peanut pieces work better.

*A note about amounts before we move on: When mixing peanuts or peanut flour into things, use as little "mix in" as possible. Until you get up to a peanut, you can usually mix the dose on top of a single spoon. After that, you can use a small dish and get it all out of the way in just 5 or 6 bites.  There's nothing worse than having your kid give up on a dose part way through! The less volume your kiddo has to consume, the better!

4) Crush up the peanuts and mix them into taco meat. You heard me right. Taco meat. Sweet things often ENHANCE the taste of peanut, savory things can actually mask it. Remember to use only a small amount (see the note above about volume). You don't need an entire taco here, folks.

5) Crush up the peanuts (or use peanut flour or PB2 powder-- ask your doctor for a conversion-- they are each different!) and mix them into small amount of ketchup. Then eat with tater tots or fries.

6) Crush up the peanuts (or use peanut flour or PB2 Powder) and mix them into a smoothie.  People say that banana/strawberry smoothies are the best. Heck, we even mixed egg white powder into a Daily's daiquiri mix once ;)!!  Serve the smoothie in a sealed cup with a straw to keep the peanut smell to a minimum.

Sometimes you're even willing to serve your kid a daiquiri to get the dose in!!
 Sans alcohol, of course. Bonus: You can make yourself a full strength one
so you can get through another day of dosing!

7) Place the peanut or peanut pieces on top of a Frito corn chip and munch away.  The Frito's crunch masks the crunch from the peanut, and the corn chip/salt mask the flavor of the peanut.

8) Place chocolate syrup on the end of a spoon, then add peanut flour or PB2 powder.  Top with a bit of Redi Whip. It's delicious. Also, don't try to fly to your OIT appointment with an open can of Redi Whip.  Ask me how I know.  #TSAtroubles

It's like a little ice cream-less sundae!

9) Freeze banana slices, dip them in chocolate and use the chocolate to "pick up" peanut pieces.  Once again, frozen items mask tastes.

10) Carefully pull apart an Oreo and place peanut flour or peanut pieces inside.  Alternately, you can mix peanut butter (or flavored peanut butter) in with the Oreo frosting.  Close the cookie sandwich and eat!

If you use flour, make sure you press it into the icing.
Otherwise, you'll get a "poof" of peanut flour when you bite down!

11) Mix chocolate peanut butter with a small amount of chocolate pudding to further mask the peanut taste.

12) Dip peanuts into Biscoff cookie butter.

13) Crush up the peanut and mix it into a breakfast taco (keeping volume in mind) with eggs, cheese and crunchy bacon bits. The bacon bits will mask the crunch of the peanuts, and the taco contents hides the taste. Pour a little salsa on there, and your kid won't even know there are peanuts in it. This dosing method is a two-fer for us because Brendan did egg OIT, too!

So there you have it. Our best "hidden peanut" ideas. Do you have a creative dosing idea?  Post it in the comments below!

OIT sets US free

Brendan had a follow up with Dr. Silvers last week.  I worked together with some of his other patients, and through the magic of Facebook connections and Photoshop, we brought him the following gift:

He got just a wee bit choked up when I gave it to him, so I think he liked it.  Look at all the beautiful little faces that he's setting free.  But do you want to know something?  Behind each of those beautiful faces, there is an ENTIRE FAMILY gaining freedom, too.  OIT sets US free, ALL of US.  Yep, you, mama-- out there baking the bazillionth cupcake so your kiddo won't be left out at the birthday party tomorrow.  You, who left your job to stay home with your food allergy kid because you needed to be at every field trip and class party.  You, who sneaks a Snickers bar over the kitchen sink after bedtime.  OIT will set you free.

OIT has set me free.  It's enabled me to move away from my laser focus on Brendan's safety to thinking about what kind of career I'd like to have someday.  Even before I had a food allergy kid, I wanted to stay home with my children through the elementary years, but those will soon be over for my youngest, and thanks to OIT, I don't *have* to be at every event Brendan attends.  I dropped him off at the church lock-in this year without a second thought.  I went on his sixth grade band field trip because I *wanted to,* not because I *had to.*  And I am going back to school to try and become a physician assistant because for the first time, I can actually wrap my mind around two years of post-bac work and two and a half years of intense PA school.  OIT has set US free, and I couldn't be more grateful.  Maybe next time, we need to make Dr. Silvers a matching picture with moms and dads holding the signs instead.

Seven Months: OIT by the numbers

It's been seven months since Brendan completed his second and final round of OIT.  He has had seven months of COMPLETE FREEDOM from food allergies.  On that note, I thought I'd make a blog post of our OIT journey by the numbers.  Here they are:

>100

Brendan's pre-OIT peanut and hazelnut IgE levels. For those not in the allergy world-- that ">" means higher than they are willing to count on an allergy test.

52

Brendan's pre-OIT egg white IgE level.  Still really high!

27,846

The number of miles we traveled for OIT treatment.

6.5

The amount of months it took for each round of OIT.

58.2; 41.4; 5.56

Brendan's peanut, hazelnut, and egg IgE levels, respectively, after completing OIT.

754

Days of dosing since we began our OIT journey.

7

Months of FREEDOM.

Month One: Where he got to keep (and EAT) all of his Halloween candy.

Month Two: Where he ate EVERYTHING at Disney World, including the KITCHEN SINK.  For real, this dessert is called "The Kitchen Sink," and it was totally off limits before!

Month Three: Where he decorated and ate this gloriously cross contaminated gingerbread house!

Month Four: Where he had a donut and Resee's Pieces snowman afternoon snack.

Month Five: Where he got his first box of "mystery" chocolates!

Month Six: Where he ate deep fried Nutella at the rodeo!

Month Seven: Where he ate a huge cross contaminated bunny (and complained that it was hollow!).

Just beginning Month Eight: Where he ate at Marble Slab for the first time ever.

∞ Infinite

The number of times we have given thanks to God for OIT and for Dr. Silvers who walked us through the process.

Just after Brendan graduated from OIT, I made a video of his journey.  I realized that I somehow never linked it to this blog.  You can watch it here. OIT works.  And it has changed our lives.