This post is a long time in the making. In fact, while typing the title of this article an insurmountable amount of emotion has swelled up inside of me. It is quite frankly unbelievable.
When our daughter was just barely a year old, she experienced a relatively violent reaction to a peanut butter cereal during a church service. Or to be even more clear, just by putting that first piece in her mouth (not chewing or swallowing) she experienced that reaction. A friend commented that perhaps she was allergic to peanuts. I entertained the idea and even made an appointment with an allergist, but the thought drifted to the back of my mind thinking that this must have been a fluke.
A few weeks later (while waiting for that first appointment), she had another alarming reaction to a kiss I had planted on her cheek – just 45 minutes after I ate a handful of peanuts.
We knew it was not just a fluke this time.
She was tested for peanut and tree nut allergies at a mere 1-year old.
It was positive.
More than positive, in fact.
Her allergy was so severe that her numbers were beyond the measurable, quantitative scale. All they could tell us was it was higher than their measurable limit.
A new life ensued. A life of difficulty. A life of worry. A life of restriction. A life with a massive amount of barriers. A life of fear.
If you are a parent of a child with a deadly allergy, you know what I mean.
Everyday, you wake up not knowing if this is your child’s last day on earth…
As your child grows and wants to become an individual and experience life, you.just.don’t.know.how.to.let.that.happen.
You just don’t…
No matter what non-allergy families think, it is a hard life. It’s a hard life for the parents, but especially the child.
Friends, we are not talking about stomach discomfort, not a rash, nor a little bit of swelling, but we are talking about this person’s throat closing and within a few minutes and suffocating to death often before anyone knows what to do – or often before anyone knows what is going on. There are mere moments to do something of value to save this child’s life. This is a human being we are talking about. This is real. This is deadly. This is tragic.
Christmastime was awful.
Birthdays were awful.
Halloween was awful.
Even Thanksgiving was hard.
Vacations and travel were a nightmare.
School outside of home is near impossible.
Camping, hiking, outdoor-anything not within 15-minutes of a hospital was impossible.
You don’t realize all of the day-to-day comings, goings, events, places, gatherings, meals, parties, public parks, events and celebrations that are a nerve-wracking nightmare.
For a few examples, consider borrowing books from the library. It’s a game of Russian Roulette as you scrub them clean with clorox wipes. That seat in the movie theater (yes – a peanut-allergy acquaintance was ushered out on a stretcher in that exact situation) that might have some remaining peanut proteins from the last person in the chair, that seat on a ride at the amusement park. Especially the park picnic tables were highly off limits (think the awesome and yummy PB&J sandwich standard). I carried table cloths in my diaper bag to cover public places to sit and eat. These are situations you have probably never thought about as a parent living out a “normal” life.
I have hated reading stories of sweet children suddenly gone with split-second misjudgment or without thorough investigation of the food before it hit their mouth – both often because the defenses were down after not having a reaction in the last year or more. Those stories have broken our hearts time and time again, many happening at places from our list above.
Unless you have dealt with this in your own family, you probably don’t know what it is like as a parent in this situation. How do you let your child live life and live?
Parents of food-allergy kids know exactly what we are talking about.
That’s why when we heard about a new and innovative food allergy treatment called Oral ImmunoTherapy (OIT) we were curious as a possible glimmer of hope crept into our minds. But what was this OIT spoken of?
In a nutshell, it is an oral therapy that trains the body to accept and not react to the deadly allergen by introducing it in microscopic amounts and slowly increasing in quantity until the patient is successfully consuming the allergen on a regular basis (everyday) with no issues; eventually the body learns to adapt and accept the allergen.
That is a very brief introduction to it. And if you read that as an allergy-parent, yes, your child is eating their poison.
We had heard about seemingly wacko treatments in the past. I won’t go into the details here, but in one workshop we attended the presenter asked, “You do have an EpiPen just in case the child has a reaction? We can’t administer it but you can.” Needless to say after hearing of “treatments like that” in the past our defenses were high on a “new approach.”
So needless to say, when we first heard about this, our blood pressure rose, our heart beat faster and the stress-o-meter burst out of it’s shell. It was basically a response of, “You want to cure my daughter by feeding her her poison?”
But we went to the seminar to find out more. After it was explained, it actually made some sense.
This is a relatively new treatment that is becoming very popular very quickly because of the high success rate. When we started almost two years ago, she was patient #36 of our doctor – and he at the time was one of only five doctors nationwide that were doing this innovative treatment. The success rate nationwide has been around 85%; her own doctor’s was around 97%. He treated patients from all over the world (even as far as Australia) moving here temporarily for treatment. The reason we share that is because we’re amazed that we only live five minutes up the road!
While at the seminar, they played a video to help sum up the treatment (he was very careful to state this was not to make fun of the allergy but to make a point) from The Princess Bride; you know where Vizzini and Westley are battling the wits and Westley pulls out the poison in the cup, only to find out that both cups had the poison and Westley had been spending a long while building an immunity to it. Well, it’s much of the same idea and there is no other explanation that is more simple or precise to share than this.
Honestly, the decision to do this treatment was a plaguing decision. We discussed it for a while, talked with her for a long while, prayed and ultimately decided that this was something we were all willing to give a try. Worst case, if it didn’t work we would not be in any different of a position than we were then and had been for the last 10 years.
We thought that this was a real opportunity for a real cure. Something neither her dad nor I thought possible.
We thought that we would live every day of the rest of our lives in fear, not knowing when that day would come when she had an accidental exposure, always expecting that phone call whether in her youth or as an adult, that the moment we dreaded had finally come. So why not give this a try under the protection and direction of a trained allergy specialist/doctor? If something goes wrong, we have the doctor’s help under the doctor’s care.
And, if it did work…then life would be dramatically different!
Well, friends, just two years later, her treatment for peanuts, almonds, cashews and hazelnuts has been completed. She also naturally gained an immunity to pecans, walnuts, brazil nuts and macadamia nuts during the process (which is apparently common – cure one tree nut with the result of curing many).
She started with peanuts solely as they were her highest allergen. The treatment was 6 months long and she experienced sheer success with a couple of very minor skin reactions. She graduated January 2015 from peanuts and life became so much more free, but at the same time difficult because she now had to eat peanuts and products with peanuts (to maintain her immunity) but avoid foods with tree nuts.
This was a little tough, but knowing that peanuts were behind her was an amazing feeling. But life wasn’t quite yet where we hoped it would be.
In June of 2015, she started treatment for her remaining deadly allergies. Her numbers had dropped significantly since graduating from peanuts, but still too high to be safe and still quite deadly.
So we began round #2 and treated the remaining tree nuts at the same time. Another 6 months of treatment..this time with no reactions at all! She graduated in January of 2016 completely food allergy free!
We celebrated with her trying Thai food, Mongolian food, Chinese food, ice cream shops, bakeries and more.
So how has life been the past 5 months completely food allergy free?
I had dreamed about these days, these months and these years thinking about how incredibly exciting, free and fun life would become. And it has been that! In fact, it’s been a 5 months of firsts – first unrestricted birthday parties, attending birthday parties without restriction, road trips in desolate places, foodie firsts, life firsts and so much more. It’s crazy to me to shop without reading a single label! Utterly amazing.
She’s already signed up for her first summer camp – something we could not safely let her do, especially after reading the incredibly sad story of a girl with deadly peanut-allergy, daughter of a doctor, who attended a summer camp with both of her parents present as counselors, to only accidentally ingest a food containing peanut butter (I think it was Rice Krispie Treats made with peanut butter that they thought was just the plain ol’ stuff) go into anaphylactic shock and not make it to the hospital in time to die en route to the closest medical facility. Heart-breaking! If they couldn’t protect her (being a doctor and being present), I could not just as a parent. But now, no more worries! She’s free to go and enjoy life!
What’s funny is that we thought life would be a big ball of exciting each and every day, but in all reality, life is just “normal” now. It’s not the old exciting in the negative way like it use to be, it’s just normal – as normal as life can get!
Praise the Lord!
And OIT has grown in massive popularity over the past year. We understand that it is no longer just the five doctors nationwide but many more with thousands of kids now undergoing treatments all over the nation!
Think about how revolutionary this new life is with the introduction of this life-saving treatment? Food allergies are a modern epidemic and it is amazing to watch positive changes!
Now, OIT can be done for a vast number of food allergies for not only peanuts and tree nuts, but milk, eggs, wheat, soy, etc.! The process is the same and the process is amazing!
Our daughter has shared some brief moments of her treatments on her site Allergies to Freedom, and she may share more as time goes on. But for now, she’s thoroughly enjoying her new-found free and normal life!
Thank you for posting this. I have a child with a long list of allergies and have been considering this.
We’d be happy to share any ideas, tips, support or answer questions. What food allergies does your child deal with? Our daughter was allergic to about 12 different nuts. 100% clear now!
She is allergic to milk, wheat, eggs, soy, fish, she’ll fish, peanuts, treenuts
I know that they can help milk, wheat, eggs, soy, peanuts and tree nuts. Not sure about the fish and shellfish, at least I didn’t meet anyone in treatment with us that was treating these. However, if the fish and shellfish treatments are not ready yet, based upon the success of this non-invasive treatment, I’d imagine they would be soon! If you do pursue, please keep in touch, I’d love to hear about your progress!
I have an appointment in June for her. I am going to discuss it. I’m feeling very afraid but hopeful at the same time
Ah – I know EXACTLY how you feel! I had the EXACT feelings. If you do decide to move forward, just wait until the day that she takes her first dose…I don’t think I took a breath for several minutes (and she was just fine!). Before and during, I was scared out of my mind, hopeful, but not too excited in case it didn’t work as I didn’t want to be disappointed (and disappoint our daughter). Are you seeing Dr. Jones?
Yes, we are seeing dr jones. We have been going to broadbent.
Awesome! He’s a great doctor! You can tell him hi from Katrina and family – He probably doesn’t know us as The Thrifty Couple…LOL. Are you in the area? We just live 5 minutes away from his office!
We live in eagle mountain.
Which doctor? How much does it cost?
We saw Dr. Douglas Jones at Rocky Mountain Allergy (http://rockymountainallergy.com/) and there are a handful of others in the nation that are actual allergy doctors that have implemented this treatment as well. But if you contact them, they can direct you to the closest doctor to your location.
As far as cost, because it is through an actual doctor, insurance covered it. So our fee was quite low. If you are cash patient, I am sure that they will work out options. We had a few families receiving treatment at the same time as us that were paying cash and to them it was more than worth the cost. Obviously this is a case-by-case and discussed with each doctor/clinic and the patient’s requirements.
What a blessing for all of you! Thank you for sharing.
Thank you Debbi! It is a huge blessing!
Thank you soo much for this article!!
I am 53 years old and have been suffering for many years with allergies. It started when I was in my teens with just seasonal hay fever. It progressed to reacting to every tree, weed and grass that grows all around us here in Oregon. I cannot have a live Christmas tree. I cannot walk through a field of grass without severe itching and often hives and shortness of breath. I cannot pick strawberries, but I can eat them??
I went through 2 years of allergy shots, but after the third anaphylactic reaction I stopped them.
From there, I went into what is called “Oral Allergy Syndrome” which is reacting to many foods (specific foods correspond with specific environmental allergies). I cannot eat raw carrots, green peppers, snow peas, cantaloupe, almonds, peanuts, hazelnuts……… even apples cause my throat to hurt and itch, but if I eat them with lots of water I do okay. My allergist told me that was like playing Russian roulette – he couldn’t guarantee that I wouldn’t have an anaphylactic reaction!!
I’ve been having more and more small reactions to other foods and it’s scary!!. I actually will be seeing my allergist tomorrow to discuss this increase in reactions. I will definitely be asking him about this Oral Immunotherapy!!! I’m so tired of living worried and carrying my epi-pen and inhaler with me everywhere.
Thank you again for sharing your story!!
I am so sorry to hear about all of these issues. Allergies and living life with them is far more difficult than people probably realize. Everyday activities and events become an nightmare. This is such a new treatment, your allergist may not have a full view point on the treatment, but never hurts to ask. I would also encourage you to do research online. There is also a OIT Facebook group that can help connect you with OIT allergy doctors and answer a lot of questions. This is not wide-spread yet and so there are only a few places in the country where you can get help. Keep me posted on your journey and I hope and pray you can get answers and relief soon!
We are getting ready to start this. Thank you so very much for sharing! Do you mind if we share the link and picture on our blog? Our audience would love this. Thanks for considering!
Hi Jamie, Yay, I am excited for your family to begin this next life-changing journey! I’d love to hear how it goes. Please feel free to share on your site or where ever you would like. 🙂
Thank you, Cassie!
The principle on which this treatment is based seems alike to the foundation stone of Homeopathy…like cures like…and Homeopathy gives excellent results in curing allergies and is especially good and safe for children…
What about the EpiPen? Does she still have on just in case?
Yes – we will always carry one. Everyone should honestly have one – deadly allergies can arise at any time! 🙂
I am wondering if it will be possible to treat other serious life-threatening allergies, besides food allergies, with this? I am severely allergic to bees & other venomous insects (wasps, hornets).
I have wondered this as well. My mother-in-law has a deadly allergy to honey bees. Our kids haven’t been stung yet, but I also carry an epipen for this. I haven’t heard about a similar cure for these types of allergies however because OIT is just for food. But who knows what the future holds!
Thank you for this information. We will look into it. I fully commiserate with you on life not being normal with severe food allergies. Between myself and one son we have seven different life threatening allergies (only one of them being the same in both of us) and second son just recently added an additional food allergy. Since both are young adults we worry tremendously about the dating/kissing issue as each of these allergens are to common foods. It would be amazing to not have to be quite so diligent every single day.
Thank you CL – It is nice to have those that understand, but your situation is even more difficult. We are so, so sorry! I really hope you can find a doctor that does this treatment and it works out!
Thank you for giving hope that there is a cure for food allergies. My daughter is reactive to Macadamia, Pistachio, Walnut, and Brazil nuts. Do you have any clue as to how many nut types should be treated by OIT to eliminate every allergic response?
Hi James – I don’t know because I am not an allergy doctor, but I do know that they treated our daughter’s most severe allergy by itself first. Then they were able to treat all of the other nut allergies all at one time successfully. But I don’t know if this is the case for each patient. So I would look into it and work from there. 🙂
Who is your doctor and how do I get their information? I live in Boston and have not heard of this treatment. I would travel for the necessary time to your doctor to get rid of this life threatening allergy…. could you provide the practice and name?
I know some people who went through this same process but understood that the allergy-afflicted person must eat a carefully measured amount of their allergen each day. Is this correct? My daughter is allergic to dairy, eggs, peanuts, tree nuts, sesame, and sunflower.
Yes, that is the high level explanation of the program.
It’s been 2 or 3 years since you wrote this article. I ‘d like to know how is your daughter in the present, regarding the allergies. Any changes? Hope she is weel.
She has had zero problems and has lived a totally normal life for years now!
What is her daily dosing schedule? My daughter has graduated and is in maintenance phase. She doses 8 cashews & 8 almonds every morning. She is growing tired of this so I’m looking for recipes to include her exact dose amount. Any ideas?
Hi Jessica, does it have to be in the morning or at the same time each day? I make amazing dressings and sauces in a bullet-style food processor using a quarter cup of nuts as the base. I add bell pepper, zucchini cores, celery or even carrot for the bulk; water, lemon, or lime juice for the liquid; any number of fresh or dried herbs and spices (plus some sort of sodium) for flavour. I love making curry (including some coconut and lime leaves is the best!) or mac ‘n’ cheese sauces (adding nutritional yeast gives a different cheese flavour, but red bell pepper, garlic and onion powder and salt already tastes like cheese, and lime juice can help too) the most. I pour them over a big bowl of salad or succhini noodles. It only takes 5 minutes, there’s no cooking, and they’re way better than any dressings/sauces I’ve ever bought. You could also just make cookies or granola bars with the nuts in them. They can be used in meat loaf, though that would be harder to control the dose. Oh, nuts are also amazing blended into a cooked tomato pasta sauce!
I am amazed reading this blog an all the comments below! I’m so desperate for my daughter who is 19 months and has several severe food allergies, including eggs, dairy, peanuts and tree-nuts, it breaks my heart because she doesn’t understand why we can’t give her certain foods and I’m always so scared she’s going to be eating something by accident from her little cousins or at family gatherings. Her allergist never mentioned anything like this to me, We live in Texas but I’m willing to travel to see this famous Dr. Jones!! I don’t want to keep living with this sadness and stress, I don’t even want to think about the time she grows up more and goes to school she will be exposed to these things everyday!
Thank you so for writing this blog! I feel like there’s hope now 🙂
This is great news! Thank you for sharing! Does your child have to take a daily dose of this medication for life?