OIT: One Year Anniversary

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OIT One Year Anniversary

 

We just passed the one year anniversary of my son’s graduation from peanut OIT.    That means it’s time for another update!  But before I tell you how things are going, I just want to dump out my stream-of-consciousness because, well, I really need to.  I’ve been too quiet for too long.

If you’re the parent of a child with food allergies, particularly nut allergies, I don’t need to tell you that it’s a scary time.  So many spices, seasonings, bread products, and many other items are being recalled for cross-contamination with both peanut and tree nut products.  It seems we can’t escape it at the moment and I think it’s safe to say that the full extent of it is still likely unknown.

I mean, we already know that making our own food from scratch is (more often than not) the best way to go to know exactly what’s in it, but sometimes…sigh…it’s nice to have a little convenience, too.  Right?  I know.  I really do.

And sometimes, like right now, even cooking from scratch with trusted brands isn’t always safe either.

I don’t know if this truly adds to any heightened anxiety about the general situation overall.  Plenty of manufacturers do not label for cross-contamination because they’re not required to do so by law.  Generally speaking, the most basic act of eating is a risk if you aren’t familiar with a manufacturers labeling practices.   It’s a very scary way to live.  My son and I have both suffered from some officially diagnosed elements of PTSD because of it.   Constant fight or flight.  Constant vigilance.  Constant fear of unknown.  Isolation for safety.

I have not forgotten any of this, but we have both moved on.  My son?  He can’t really conjure up what it feels like to be in that place anymore.  He just isn’t there.  He isn’t afraid.  He’s funny.  He tells really great, witty jokes.  He rarely gets angry anymore.  The only pressure he has now is self-inflicted due to his Type A-ness and deep desire to do well academically.

And now that we’re seeing all of these recalls, I will say that I’m very grateful that my son can eat any of the peanut cross-contaminated items and nothing will happen.  Nothing.  That’s where the rubber meets the road for me and OIT.  It’s not about eating peanuts all day, all the time, whenever.  It’s peace of mind my family can’t find anywhere else.

Peace.  Psalm 34 has been huge for me in dealing with this, by the way.   For heaven’s sake, don’t assume it’s the only one, though.  I’m more than familiar with most of these.   I have to say that I’ve spent a good portion of my adult life striving to have peace and believing the promises of God for it.  Really and truly believing without any doubt.   Perhaps surprisingly, that’s not terribly hard for me.  God hasn’t always answered my prayers exactly the way I want, but He has answered them.  I don’t know.  I’m just profoundly blessed.  I don’t know what else to say about that, really.  I would be here all day.  I’m very grateful.  It makes me cry.

I don’t know where that comes from exactly, but I think it has something to do with the fact that I didn’t have peace as a child.   My father had cancer off-and-on for as long as I can remember.  From the time I was a little girl.  Constant flux.  Constant emotional turmoil.  Instability.  My mother had a few heart attacks when I was in high school.  I was certain that I would be an orphan by the time I graduated.  I was very afraid of that.

In my life, as a result, I have avoided any unstable situation like the plague.  Stable. Stable. Stable.  Peace. Peace. Peace.  It may as well be my mantra, even today, because those events absolutely shaped the person I’ve become.    It’s also one piece of the puzzle that drives me to always believe there is a solution to most every problem.  Problems = instability.  Must. find. solutions.  Including food allergies.  It’s part of what led us to OIT.  So, all of this to say that it’s a small part of what got us to the place we are today.  Just a piece.  Peace.

And in a somewhat similar vein (stream of consciousness and all), when I started my blog years ago, I planned to only post nut-free recipes.  For the most part, I’ve adhered to this.  There are very few instances where I did not and I don’t feel good about that, to tell you the truth.  That’s why I’ve decided to get back to sharing only recipes that are nut-free.  After all, they’re what I make most even though my son went through OIT for his peanut allergy.  I’ve just never been a big fan of nuts (except hazelnuts, that is), so they’re really not  a part of my daily, weekly or even monthly cooking.   So, among the other things I mentioned, this has been on my mind a lot in the last few months.

During my recent move-induced hiatus, I had a chance to take a look, from a distance, at our blog.  What it has become.  What it was supposed to be.  Where it’s going.  In that hard look, I can safely say that part of me has felt very disconnected from it.  Since my son finished peanut OIT and that cloud was lifted, things changed.  Considerably.  And so did much of this blog…like the inclusion of non-nut-free recipes.   I mean, the blog title alone, while multi-faceted in my case, is largely about my son and his allergies and how they’ve impacted our lives.  They still do, but the peanut allergy is more like background noise versus a blaring megaphone of possible impending doom.  There is a balance somewhere in all of this and I’m certain I’ll find it….since I’m solution oriented and all.  In the meantime,  expect only nut-free…except me.  I’m the only nut allowed on this blog.

As for my son, he takes his daily dose of 8 peanuts in the form of peanut butter with some chocolate chips and that’s it.  If he doesn’t eat enough before his dose or he’s getting sick, has a particularly stressful day or his seasonal allergies aren’t well controlled, etc.  he’ll have some mild symptoms – sneezing, nose/lip itching, sometimes coughing, and we give Benadryl.  I don’t have to do that nearly as often as I did before.  I thank God for that.   It’s quite stressful, too, in its own way.

Also, now that he’s something of an OIT expert, he is enjoying talking with other kids who are considering OIT and scared about what might happen.   He is enjoying helping people.  Yep, you know what THAT does for THIS Momma.  It’s everything – the cornerstone of who I try to be.

So there.  That’s my update, yes, in a nutshell.  It is one of my favorite dumb puns after all.

From Fear to Fun: OIT Maintenance Update (Peanut Allergy Treatment – 6 Months)

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Mackinaw CityLake Huron Beach - Dont Make Me Nuts

 

Whenever I’m asked how my son is doing with his peanut allergy treatment “because I haven’t said anything in a while”, I always have the same answer, “Quiet is good.”  Unfortunately, I don’t have a strong tendency to remind you (or myself) when things are going extremely well.  They are, though.  They really, really are.

When he finished treatment back in January, I promised to keep you posted about all the things that have changed for us.  Since we hit the six month mark yesterday, it seems to be a good time to take a look back at those six months and see exactly what is different now.  I think I remember most things, but it’s all starting to meld and blend together.  We have NO restrictions on peanuts, so it’s getting a little difficult for me to point out all of the things that would have panicked me before.   If you can imagine, I just don’t think about that.  I thought that would never leave me, but it has.   All I can say is that I hope and pray that my family never has to go back to that place.   I DO remember the fear and terror all too well.

But before I tell you all of the things we’ve done in the last 6 months since he graduated from his OIT program,  I had better explain a little bit more about OIT for those of you who are  new around here and have no idea what I’m talking about!

My son has a severe peanut allergy.  In April 2013, he decided that he wanted to try OIT (Oral Immunotherapy) to desensitize him to peanuts.  Well, it wasn’t quite THAT simple, but that’s the short version.  In any case, OIT is done by an allergist using a very controlled protocol that allows the patient to increase his/her tolerance to peanuts (or another allergen) by initially determining the maximum amount  of the allergen that can be tolerated and increasing what can be ingested and tolerated over time until a specific amount is reached.  In my son’s case, he ultimately ate 24 peanuts in the peanut challenge at the end of his protocol and currently eats a single dose of 2 teaspoons of peanut butter each day to maintain his tolerance.  And what we think is the best part of the specific protocol our doctor follows?  He can eat as many peanuts as he wants now.   No, I am not kidding.

Now, I want to reiterate that this is a specific protocol that not every doctor who provides OIT uses.  Some have only the goal of helping the allergic patient become ‘bite-proof.’  That means that he or she can tolerate taking a bite of something that has the allergen in it.  You may wonder why anyone would bother with this, but someone who has multiple food allergies could be eating let’s say 8 peanuts, 8 pecans, 8 macadamia nuts, 8 walnuts, and on and on, each day, after finishing the treatment.  Well, that isn’t really reasonable.   However, for a single allergy, or maybe peanuts, wheat, and eggs,  something like that with an end goal like ours,  it may be more doable.    Of course, each case and person is unique with other conditions (asthma and/or other health concerns) that require individual assessment.   I am not a health care professional and I am certainly not giving medical advice.  I am simply providing you with additional information to consider.  🙂

With that in mind, here are some things we’ve done and/or eaten since my son has completed OIT that we would not have even considered  before.  I have to say that these would  have been absolutely panic attack worthy on my end.  And while this list may seem oddly detailed, you can’t really appreciate what is different if I just say “vacation” or “Chinese food.”     You may also be surprised to see that most of these things don’t contain peanuts, but they’re definitely or very possibly cross-contaminated foods.  My son doesn’t like peanuts, so he doesn’t really eat them outside of his dose.  And that’s ok.  He does love the freedom to eat all sorts of cross-contaminated foods whenever he wants and go wherever he wants.  That has meant more to him than the ability to eat peanuts.

Food
Chinese Food ~ That’s a big one.  (Egg Rolls, Spring Rolls, Sweet/Sour Shrimp, Sweet/Sour Chicken, Fried Rice, Pepper Steak, Beef & Broccoli, Won Ton Soup, Polynesian Beef, Beef with Peapods, and probably more, too)
Red Robin
National Coney
Toby Keith’s I Love This Bar & Grill (This is his favorite restaurant.)
Thai Food  (Crab Rangoon, Chicken Lettuce Wraps, Pad Thai (contains peanuts!), Pad See-iew)
Nestle Toll House Chocolate Chip Cookies
Dairy Queen (Blizzards, Cones, Shakes, Coney Dogs)
Raisinets
Twix
M&M’s
Milky Way
3 Musketeers
Kit Kat
He doesn’t eat these, but we have Chunky and Reese’s Pieces candy around occasionally because I love them.  I never kept peanuts or cross contaminated food in the house before.  If something was ever accidentally bought, I would immediately bag it, put it in the trash, and take the trash bag to the garage.  One step further?  Instead of waiting for trash pickup, I made my husband take that particular trash bag to work with him the next day.  I didn’t even want my son to walk by peanuts on his way to get his bike.

I’m sure I’m forgetting a whole lot here, but these are the big ones.

Vacation (We have not gone on vacation in 11 years – most of those years because it just hasn’t been safe.)

Mackinaw City/St. Ignace/Mackinac Island (7/2014) – If you have a child with nut allergies (or allergies, generally, as there are horses everywhere), the island may be one of the scariest places on the planet.  The whole main road is filled with the smell of nut laden fudge and candy.  There are, literally, shops everywhere.  We would never have ventured here before his treatment.  Well, guess what?  We not only went,  but we bought some fudge!    We also ate out for lunch and dinner on each day of our 4 day trip at  8 different restaurants – only one was a chain restaurant, and it was Cracker Barrel at that.  I point this out because most  families who contend with food allergies avoid non-chain restaurants due to the greater possibility of cross contamination.  Cracker Barrel is an allergy minefield, too.  They will not guarantee their food isn’t cross contaminated.

Now, this will surely seem strange, but we sat on benches.  Random benches.  I mean, I was always worried about the possibility of traces of nuts all over everything before.   We wouldn’t sit under trees for fear that a squirrel had dropped peanut bits all over.  We never touched any handrails anywhere.   We never sat at picnic tables.  This time around, the kids sat on benches, ate at picnic tables, and leaned over rails to look at things.  In the museums, we touched every hands-on display they had for the kids to explore.   I didn’t think twice about it.  Neither did they.

Holland/Grand Rapids/Grand Haven (5/2014)

The lack of guard rails around the lighthouses and piers scared me more than anything else on the entire trip.  I don’t have much to add about this particular trip over the other because it was exactly the same in terms of touching everything and eating out for nearly every meal.  It was, however, the first time I let my son swim in a pool that may have nut traces.   I should point out that the risk of a reaction from a chlorine filled community pool is rather remote, but I didn’t take any chances at all before.  My, how things have changed in such a short time.

Reading this over, I’m a little disgusted with myself that I didn’t keep better track of all the things we’ve done, because I know there are more, but we’ve been busy!  We’ve been doing, living, and enjoying every single day.  Sometimes, when you’re in the midst of it, you just enjoy it.  I’m not about to miss a moment of this.   Life is normal now.  Normal is quiet.  And quiet is good.

(Final note:  I am not a doctor and OIT is not for everyone.  If  you’re interested in pursing OIT, please educate yourself about the specific protocols used by each doctor.  They do vary, and being able to eat peanuts ‘whenever’ isn’t the end goal of every protocol.  If you need assistance, please feel free to comment here or contact me and  I will do whatever I can to steer you in the right direction.  To learn more about our fabulous allergist, please visit OITcenter.com.  If you want to learn more about OIT, please join the OIT 101 Facebook pageClick here to read more posts in my From Fear to Fun series.)

 

From Fear to Fun: Nestle Chocolate Chip Cookies and KitKats!

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nestle chocolate chip cookies

Chocolate Chip Cookies.   This is just one of the small ways our life has changed now that my son eats peanuts.

When I was growing up, Nestle Toll House Chips were synonymous with Chocolate Chip Cookies in my parents’ house.  I moved out, bought my condo, and continued to use them there.  No big deal, right?  Most people don’t give that a second thought.

But then, I had my son.

He was/is allergic to peanuts.

This.  About halfway down the picture…

nestle toll house chips are made in a facility with peanuts

My life of alternatives began.  Some things were gone.  Snickers. Peanut Butter Cookies.  My beloved Chunky bar.   Nestle Toll House Morsels.  Morsels of magic.  Sigh…

After my son was diagnosed with his allergy, we always used Hershey’s Chocolate Chips.  And really, it did not matter at all.    I just wanted my son to be able to eat everything without having to worry.  Chocolate chip cookies were a must.

Enter OIT.

Graduation from OIT.

Now.

chocolate chip cookies

My kitchen is filled with this Nestle Toll House Cookie landscape.

My kitchen is filled with peanuts.  

I’ve got peanuts in my kitchen.

I feel like Rapunzel in Tangled, “I’ve got a person in my closet.”  It’s just so incredible and unbelievable.

at least 8 peanuts twice a day

And as you know, my son is required to eat at least 8 peanuts twice a day.  See where it says, “At least”!?!    He eats 9 peanuts twice a day and cross contaminated foods are not a worry.

He loves KitKats so much that his beloved Grammy got him a bag of KitKat Mini’s for Valentine’s Day.  It’s all he wanted.

As for me, I didn’t want anything for Valentine’s Day.  I already have everything I could ever want.

To read more posts like this, check out my series  From Fear to Fun.  It contains highlights of the treatment my peanut allergic son is going through to help manage his allergy and hopefully cure it.

(Final note:  I am not a doctor and OIT is not for everyone.  If  you’re interested in pursing OIT, please educate yourself about the specific protocols used by each doctor.  They do vary, and being able to eat peanuts ‘whenever’ isn’t the end goal of every protocol.  If you need assistance, I will do what I can to steer you in the right direction.  To learn more about our fabulous allergist, please visit OITcenter.com)

(The kitchen tools I am using above were provided by Good Cook for a previous project.  I just use them all the time because I love them.  If you need a fabulous baking pan, check out the 12×18 Sweet Creations Aluminum Baking Pan  and the Stainless Steel Cookie Dropper that makes wonderful jumbo and perfectly sized cookies.)

From Fear to Fun: The Peanut Challenge!

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24 Peanut Challenge OIT (Oral Immunotherapy Treatment)

Today is a very big day for our family!  As you know, my son has been going through OIT (Oral Immunotherapy Treatment) to desensitize him to peanuts.  Well, we’ve finally reached the end of the road and today was the 24 Peanut Challenge!  We were all a little nervous, but we knew our buddy was prepared for it and he would be just fine.  And he was.   No sniffling.  No stomach pain.  Nothing.  He just sat quietly playing games on his iPad until the hour was finished.

What happens now?

The restrictions have been lifted.  He has to eat a minimum of 8 peanuts twice a day for the next three months and can eat cross contaminated foods with no problem.  In fact, he’s eating a KitKat right now.  They’re cross contaminated with peanuts!  In three months, he’ll drop down to a once daily dose of 8 peanuts and we’ll begin the process of determining whether or not he’s allergic to tree nuts.   He’ll eat the daily dose for 3-5 years – for now.  Honestly, I’m afraid to put a timetable on this.  I feel like we need to continue the treatment….forever?  Forever is a long time, but I’ll stick with forever until we know more about the lasting effect of the treatment.

I’ll continue to keep you posted about what we’re doing and where we’re going now that we can do more!  I don’t expect any of us to sit still – if we ever do again.   🙂

To read more posts like this, check out my series  From Fear to Fun.  It contains highlights of the treatment my peanut allergic son is going through to help manage his allergy and hopefully cure it.

(Final note:  I am not a doctor and OIT is not for everyone.  If  you’re interested in pursing OIT, please educate yourself about the specific protocols used by each doctor.  They do vary.  If you need assistance, I will do what I can to steer you in the right direction.  To learn more about our fabulous allergist, visit OITcenter.com)

MeThomas13014

From Fear to Fun: We’re Almost There!

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My peanut allergic son eats 12 peanuts

Many of you have asked how my son’s peanut treatment is going since I haven’t mentioned it in over a month!  Trust me, that’s a good thing.  A VERY good thing.  In the last update, I shared with you that he had finally reached 10 peanuts.  Well, on December 19th, he made it to the final increase of 12 peanuts.  He has been holding there for well over a month now with only one reaction in the middle of the night.  That happened just over a week ago when we had run out of Claritin.  I forgot to stop by the store and figured one dose or two wouldn’t make a huge difference.  After all, we didn’t have to use Claritin routinely until Septemberish.  Surely we could skip a dose now that we live on an iceberg without all the other environmental allergens.  Wrong.  Bad decision.

We lowered his dose by half for a single day and then increased to 12 again when his Claritin level was back up.  We haven’t had a problem since.

Now, we’re getting ready for the 24 peanut challenge!  We’ll be doing that next Thursday ~ one week from today.  I’m a little nervous about it, so we’ll likely be spending more than just the hour after his dose in the office just to make sure things are ok.  My son sometimes has delayed reactions.  When he was 18 months old, he ate a bite of my peanut butter and jelly sandwich at 5pm and had a reaction at 10pm.  That was the reaction I blamed on his pajamas.  It isn’t always like this.  Sometimes he needs Benadryl within 15-20 minutes of his dose for stomach cramps, sneezing, and a runny nose.  That’s most often tied to whether or not he has eaten enough prior to his dose.  That is huge for him.  He has to eat or he’ll have minor stomach problems.   The delayed reactions are different and scare me more.   Chest congestion is generally present and the symptoms are more…systemic.  Thankfully, we’ve only had a handful of these.

To be more clear, since we started the treatment in April 2013, we’ve had to give Benadryl around 20 times.  At this point, we haven’t had to use the EpiPen at all.

Wow.  To me, that’s just remarkable.  When we started this treatment, my son could barely tolerate 1/600th of a peanut.  Now, he eats 24 every day! Even looking back, I’m still not sure this is really happening.  Yet, one foot in front of the other, dose after dose, day after day, he’s finally here.  It isn’t the end of the road, but it is the end of the restrictions.  They will soon all be lifted and I’ll take a picture of my son eating a KitKat or Dibs, foods that are cross-contaminated, with no issues.

There aren’t words to express how profoundly grateful I am to Dr. Mayer for providing this treatment.  Or how proud I am of my 9 year old boy who has shown such bravery and commitment.  I don’t know many 9 year old children who would do the same.  I certainly wasn’t one of them.  I couldn’t even stick with Girl Scouts longer than a few weeks when I was his age!  You know, when we started this journey, I thought this treatment would just change where we could go and what we could do.  It has done so much more than that.

It has changed me.  

It has changed my son from Mr. Hyde back to Dr. Jekyll.

The deep anger has dissipated.

We have relaxed a lot.

And now, I truly have a full grasp of what can done through perseverance. 

It’s about all the little steps in the right direction that add up to a big positive change.  

 

smallest step

 

To read more posts like this, check out my series  From Fear to Fun.  It contains highlights of the treatment my peanut allergic son is going through to help manage his allergy and hopefully cure it.

(Final note:  I am not a doctor and OIT is not for everyone.  If  you’re interested in pursing OIT, please educate yourself about the specific protocols used by each doctor.  They do vary.  If you need assistance, I will do what I can to steer you in the right direction.  To learn more about our fabulous allergist, visit OITcenter.com)

From Fear to Fun: Double Digits!

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Fromfeartofun

 

I’m long overdue for an update on my son’s peanut treatment, aren’t I?  Well, I guess that’s because it has been largely uneventful.   A couple of months ago, we hit some rocky road because we determined his allergy shots and fall weather were causing an increase in the number of reactions he was having  immediately after the peanut doses.   We had already cut the shots down to every 3 weeks and it didn’t seem to be enough.  We’ve now stopped them until he finishes the peanut treatment and we’re not having any issues.   I do want to point out that these were not serious reactions.  They nearly scared the life right out of me, but they weren’t serious.  We increased his daily Claritin dose and gave Benadryl for immediate relief.  None of the reactions progressed or required additional treatment with an EpiPen.

So, how are things going?  As of yesterday, he is now eating the peanut butter equivalent of 10 peanuts twice a day.  He has one more increase to go before he’ll have a 24 peanut challenge.    It’ll be a while though.  We’re taking the increases slowly now, so he’ll go up to 12 in about 3 week.  A month later, he’ll challenge with 24.  And yes, I’ll have video of that for you to see.  You’ll probably hear me crying, but I’m sure you don’t expect less from me by now…

To read more posts in this series, check out: From Fear to Fun.  It contains highlights of the treatment my peanut allergic son is going through to help manage his allergy and, hopefully, cure it.

(Final note: Allow me to reiterate, OIT is not for everyone.  If  you’re interested in pursing OIT, please educate yourself about the specific protocols used by each doctor.  They do vary.  If you need assistance, I will do what I can to steer you in the right direction.  To learn more about our fabulous allergist, visit OITcenter.com)

From Fear to Fun: Knowledge Is Power…Sometimes

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Fromfeartofun

 

Whenever I or someone in my family gets sick, I always think of the worst possible scenario.  I blame this on my many years of college, by the way.  And you know only the craziest of crazy notions will do –  The infection may be antibiotic resistant.  The rash may cause necrosis.   Yes, I could go on and on, but I’m starting to get the heebie-jeebies already.  Hah!

So, you know my son is going through OIT for his peanut allergy.  I didn’t check, but I think he was eating 6 peanuts twice a day in the last post update a month ago.  That’s why I’m updating this again.

About that time, we all got a cold.  I felt a teensy bit sick for a day.  My husband was the same.  My daughter was marginally more ill than my husband and myself.  My son, bless his heart, was sick.   That said, the residual chest congestion/spasms are still hanging on. This is not unusual for him because he has respiratory issues – borderline asthma.

This is what is slowing his treatment progress down.  He has been having reactions – respiratory reactions – when he’s immobile, taking Claritin, with apple juice/sauce, and on a full stomach – all the things we’re supposed to do. He just starts coughing out of nowhere. It progresses, thickens, and becomes extremely spasmodic.  When I talked with his doctor, he said it sounded like anaphylaxis.   That’s beyond scary to me.   I’ve been monitoring for symptoms as an indication of anaphylaxis vs. the 1 that he’s having.  Plus, it resolves with Benadryl.  I’m still afraid that one of these times it won’t.    I’ll be honest.   I have felt very unsure about my ability to discern what is happening sometimes.   And that worst case scenario I mentioned before?  Everything feels like it’s the worst case scenario.

That said, he won’t be increasing until he’s fully able to tolerate his current dose with no issues.  He usually sails through the whole week with no Benadryl at all.  Something is just different about these doses.  Sometimes he doesn’t have reactions, but something is ‘off’ with him.  Sometimes it’s only sneezing.  Sometimes it’s coughing.  Sometimes it just happens when he walks to the kitchen – about 15 feet.  He’s just too close to his threshold right now.

On a more positive note, I will say that it has now been a full week since his last reaction requiring Benadryl.  That’s the longest stretch we’ve gone yet.   It’s usually about every 3 days or so.   And now, all of those thoughts that maybe my son’s experience with OIT was an anomaly, worst case scenario, and that he’d never adapt to this dose were wrong.  As usual.   And that he does, in fact, fit neatly into all the medical literature that supports his particular experience.  As usual.  And that his tolerance, over time, is increasing….as usual.

When we do finally move forward, he’ll increase to 8, 10, and then 12. He’ll hold at 12 for a month and challenge with 24. We’re close to the end, but there are some big jumps ahead. I just want him to be completely ready for them.

Now, I’m sure I’ll get a barrage of emails again asking me WHY we’re doing this.   Well,  I’ll tell you.  The risk involved in doing this treatment is minimal versus doing nothing at all.

Right now, my son is 9.  It’s relatively easy to maintain a nut-free environment.  He’s a homeschooler.  His field trip activities, friends, and sports events are controlled.  His life will not always be so carefree and controlled.

As he gets older, the complexities of life will be far more pressing.    And honestly, these are just a couple of the notions floating around in my head:

  • Visions of my son wanting to kiss some girl so badly that he won’t ask what she has eaten and…I can’t say it.   You know what might happen.
  • Or that he’ll go off to college, drink too much alcohol and, with dampened inhibition, eat something contaminated and…I still can’t say it.  You know what might happen.

Again, honestly, ‘normal’ parents have similar concerns about their kids getting involved with the wrong people or behaving irrationally in college.  Heaven knows, my parents were worried about me.  Ahem, unnecessarily so, I might add.  😉  But seriously, we have a variable that doesn’t exist for ‘normal’ parents that makes life a bit more challenging.  I. Want. That. Gone.  So if he does succumb to a moment of unbridled stupidity, it won’t…you know what might happen.

After all, good judgement is largely reserved for those with knowledge.  Knowledge is often derived only from experience.   That is the nature of living.  It is my job, as his mother, to give him the capacity to live.  Not ‘live’,  L-I-V-E!  Live happily.  Live well.  To smile at the sun.  To feel the inherent joy that can be found in the everyday.  To accept that he’ll make some dumb choices.

And if he’s able to finish this treatment, he’ll be able to eat peanuts.  At will. Whenever he wants.  Eventually.

Obviously, that’s not a green light to forego his personal scruples, but it does allow him to enjoy life on a level playing field.

And MUCH more importantly, this treatment has already changed so many things for us.  Here’s a more recent example for you.  Because I’m all about the positive impact of what we’re doing.  I should really detail more than just a few here and there.  This happens a lot, really.

Last week, we went to the bread outlet store. The lady working behind the counter handed both kids a generic Twinkie type thing. They’re cross contaminated with peanuts. I didn’t panic. Nothing. We just politely declined them. Why? Because Thomas can handle 7 peanuts because that’s his threshold. That’s a lot of peanuts. Any trace on that package is inconsequential now. He just locked eyes with me and I could see what he was thinking.  He understood.  He overrode the panic he initially felt, and politely said, “Thank you, but I have food allergies.”  A year ago, he’d have panicked, asked to leave, and I wouldn’t have allowed him to touch anything until I could wipe his hand with a wet wipe. So as scary as all of this is, it has already changed our lives.

This is what we hold onto in the face of fear. We pray, walk on eggshells, and keep moving forward. Always keep moving forward. It’s everything.

To read more posts in this series: From Fear to Fun

(Final note: Allow me to reiterate, OIT is not for everyone.  If  you’re interested in pursing OIT, please educate yourself about the specific protocols used by each doctor.  They do vary.  If you need assistance, I will do what I can to steer you in the right direction.  To learn more about our fabulous allergist, visit OITcenter.com)

What It’s Like to Be an OIT Mom

This post may contain affiliate links. Read my disclosure policy.

eating OIT dose

I’m not hostile, confrontational, and certainly not intolerant – particularly of  “Allergy Moms”.  NO ONE understands that existence better than I.

But…enough is enough.

This photo collage is MY peanut allergic son eating 6 peanuts worth of peanut butter loaded with chocolate chips – just this morning.  This is not some doctored set of photos.  This isn’t Sunbutter.  This is J-I-F.  In my formerly nut-free kitchen.  You can see my daughter’s paper “Princess” plate on the table along with her favorite “beach” cup.  Her marginally clothed magnetic dress up girl is on the fridge.   My son, as usual, has his favorite green cup.  My box of Grape Nuts is still on the counter.    This is REAL.  This is our day.  Every day.  Twice  a day.  He’s not reacting. I don’t need Benadryl. I don’t need an Epipen.

But while we’re nowhere near ready to call this a cure (I am.), we can call this desensitization.  My son can tolerate 6 whole peanuts.  If he finishes the treatment, the restrictions will be lifted and he’ll be able to eat them whenever he wants.  Yes, you read that right.  Whenever. he. wants.

But, while I have a child with food allergies, I am most certainly NOT an “Allergy Mom”.

I don’t define myself as such and I would not allow anyone to define me that way either.   I am Melissa, mother of two loons, and that’s that….among many other things.  Allergy Mom is a definition I don’t want.    It elicits pity.  And if there’s one thing I don’t want under any circumstances, it’s pity.  Neither does my son.   Holy crepes, do NOT feel sorry for me or my son because he’s allergic to peanuts and tree nuts.  There are worse afflictions to have.

Now, before I delve more deeply into my point, I have to say a couple of things:

This treatment is absolutely not for  everyone.  There are some restrictions, and that’s not what I’m talking about.  I’m talking about those for whom it can work.

This post is also not against working toward the equality and fundamental rights of children with food allergies.  It is not.  At all.  Don’t go there.    My son is a homeschooler because the system is so skewed against him.    I simply don’t have time for a learning curve with anyone.  I can’t and won’t risk it.  Period.

So, yes, we have to ensure that our schools provide an equally safe learning environment for our children.

Yes, we need to be sure that all parents/teachers/friends/students/acquaintances know and understand the protocol that should be used in the event of an emergency.

Yes, we need to be vigilant, and teach our children to be equally vigilant about maintaining a nut-free environment.

That’s a resounding yes to these aforementioned topics – among many, many others.

But there is already so much discussion about life with food allergies.  I get it.  It’s important and necessary, but so is what we’re doing.   That’s why I have to say something.   Because so few people have my voice.

As I read a recent article on HuffPost Parents yesterday, I have to say that I was sickened.    It was absolutely the straw that broke the camel’s back.  It was a post about what it’s like to be an ‘Allergy Mom’ and was the catalyst that finally caused all of this to precipitate out.  And no, it’s not just her view.  In fact, it has little to do with her.  It’s only the most recent example, as I’ve read many, many articles over the last few months, and each one has fallen like coal into my fire.

Why?

She states, as do many others, “So our household has been dairy, egg and nut free for nine years now, and as parents we’ve also never known any differently.  And that’s what this story is about. Not curing, treating, studying, diagnosing or even living with food allergies. It’s about parenting with food allergies. ” (Carissa K, contributor to Huffington Post, What It’s Like to Be an Allergy-Mom)

Right away, I’m sure you see my problem.

Then, immediately following this self-justification, she begins her lamentation about life with food allergies – only shifting upward at the end to say, essentially, “It could be worse.”

I will challenge that assertion with, “It could be better.”

So, let’s briefly talk about parenting with food allergies.  I do it all day, every day, too.   However, my perspective is infinitely different from hers.

For me, it’s not about what we can’t do.  I don’t even feel the slightest bit restricted by what my son can’t do.   I’ve embraced it as a medical condition, accepted it, and moved on.

It has always been about what we can do.

We go trick-or-treating.  We decline nut laden candy, remove cross contaminated candy, but we eat candy.  That’s what matters.

We eat Canadian KitKat’s vs. American KitKat’s, but we eat KitKat’s.  That’s what matters.

We carefully vet restaurants and staff before we eat out, but we eat out.  Sure, I ask my buddy, “How ya doin’?”, but I don’t make a big stink about it.  I’ve already alerted the staff, and we don’t eat at Chinese restaurants or places I consider minefields in the first place.   That’s what matters.

I carry $250 EpiPens, but I don’t tell you that.  It sounds like a complaint to me.    I carry EpiPens.  They’re necessary. They save lives.  That’s what matters.

And I have never once considered this permanent.  That also matters.

So, let’s ask this fundamental question:

Why NOT?  Why is it NOT about curing, treating, studying food allergies?   Isn’t that also part of parenting with food allergies?

Let’s face it,  most “Allergy Moms” who are capable of writing blog posts are involved in all sorts of allergy groups online,  pretty internet savvy, and know about OIT.   The writer of that particular post obviously has some inkling of these treatments or she wouldn’t have mentioned them AT ALL.

Well, why isn’t it ever mentioned?

Because OIT is hard.

Because OIT is scary.

Because OIT forces daily confrontation with the allergen.

Possibly, but I’ll tell you what else I see and hear from those considering OIT.

Sometimes it’s easier to stay IN DENIAL, right where you are, than it is to have faith in your ability to help your own child.

I’ve heard from countless people who have canceled appointments and walked away from OIT simply out of fear.   You have no idea how irrational I perceive this to be.

Reactions are not a  question of ‘if’, but ‘when’.   We simply do not have the luxury of doing nothing.  We can’t keep sweeping it under the rug and accepting the victimisation that comes with the overwhelming horror of food allergies.

Wake up and hear me!  Look at those pictures and see what I see.

And before you even speculate that the reason OIT is working for us is that my son’s allergy isn’t off the charts, let me tell you something, he’s as allergic as they come.  Don’t try and make this an impossible reality for you when it probably IS NOT.  It’s a choice.  It’s overcoming overwhelming fear – core shaking fear – and doing what is right.  It’s about accepting and taking responsibility for  one huge battle to avoid a war.

No excuses.

So, what’s your excuse?

Do you like being an Allergy Mom more than you like having a cure for your child?  That’s a serious question.  If you choose the former over the latter, why would I not assume that’s your preference?

Because I don’t want to hear about how you can’t afford it.  
Where there’s a will, there’s  a way.  I would work 3 jobs, sell all my furniture, my house, by blog, and everything that has a monetary value to do this for my son.  As it is, our insurance does NOT cover this treatment.  Yes, we’re paying for it.

I don’t care if you’re scared.
I was scared.  My son was scared.  Let me say this – what might happen if he doesn’t do this treatment is a heck of a lot scarier than doing the treatment under extremely controlled circumstances.

Your “other” doctor thinks it’s wrong.
Yeah, so does my son’s “other” allergist.  You know, the one who gives him allergy shots?  He thinks we’re making a big mistake.  He can’t say why.  He just says it’s a mistake.

So you decide, Allergy Mom.  You see the pictures.  Look at them again.  Does it look like a mistake to you?  I couldn’t keep convincing myself it was a mistake when I was constantly faced with pictures like this.  That’s how we started the treatment in the first place.

Find a doctor.  Or I’ll find one for you.

Make the call.

You can do this.

It will change everything.

(Final note: Allow me to reiterate, OIT is not for everyone.  Please educate yourself about OIT and the specific protocol used by each doctor.  They do vary.  If you need assistance, I will do what I can to steer you in the right direction.  To learn more about our fabulous allergist, visit OITcenter.com)

From Fear to Fun: My Son’s First Peanut!

This post may contain affiliate links. Read my disclosure policy.

tsfirstpn

He did it!  Yesterday, my son ate his first peanut!  Sheesh, it seems like yesterday I was choking on the notion of this treatment.  Now, I’ve got a bag of peanuts sitting on my kitchen counter.  And, well, I’ll be honest.  In the last 14 hours, I’ve eaten 2 Chunky candy bars.  On top of that, my daughter had her first bite of a Reese’s Peanut Butter Cup.  She does NOT like them at all.  Big surprise there.  Neither do I.    Nevertheless, she’ll take another bite in a week, and another bite a week from that.  It’s an easy way to test whether or not she’s allergic.    She isn’t expected to be.

tpeanut

T cracking open his peanut!

For now, I’m so thrilled for my little boy. I’m so very proud of his determination and what he has been able to accomplish in just 8 short years on this earth.     He inspires me to be a better person every day, and  I’m so very blessed  and grateful to have been chosen by God to be his mother.

For more information about OIT (Oral Immunotherapy), please feel free to contact me at admin@dontmakemenuts.com or visit OITCenter.com.

You can read other posts in this series HERE.

From Fear to Fun: Happy Indepeanuts Day!

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 t4thedit

Independence Day is coming just a bit early for us this year!  On Wednesday, July 3rd, at 5pm, my not so little buddy boy will eat his first whole peanut!  I can hardly believe it.  And honestly, I can hardly hold myself together without dissolving into a puddle of tear filled gratitude!

Boy, what freedom!  Freedom from fear!  Freedom from worry!  Freedom to LIVE!

On this day (and really, all that follow), we will not only celebrate this great country, but all the benefits living here affords us.

I must say, above all that, we will praise God, who has made all of this possible!  We are so very, very blessed.  And grateful.  And humbled.

And with that, I’d like to take a moment to wish you a very happy, healthy 4th of July!  I hope your day is filled with family, fun, fireworks and all the hot dogs, hamburgers, and watermelon anyone could ever eat!  🙂

Note: If you’re in Michigan or surrounding states and you know someone interested in OIT (Oral Immunotherapy), please don’t hesitate to contact me at admin@dontmakemenuts.com for more information.  Alternatively, please feel free to visit OIT Center to learn more.

Matthew 7:7-8  7 Ask, and it shall be given you; seek, and you shall find; knock, and it shall be opened to you: For every one that asks receives; and he that seeks finds; and to him that knocks it shall be opened.

Fromfeartofun