Tree Nut Desensitization: A Mom's Thoughts
UPDATED Sept. 2023
We’ve been doing tree nut desensitization for several years now (about 5 or so). I want to share our story and hopefully give you a practical review of our journey so that you can hopefully make a good decision for your family.
First a little about me.
I’m a 16-year food allergy mom and I’ve been a Food Allergy Coach for parents for about 6 years. My oldest daughter had milk and egg allergies (which she outgrew), and my youngest daughter has peanut and tree nut allergies.
I’ve written many blog posts about life as a food allergy mom. I’ve shared some of the hard and heartbreaking parts of our journey as well as the practical knowledge I’ve learned along the way. If you’re here, you already know how hard and scary it is for your child to have food allergies. It’s not easy or for the faint of heart, but it’s also not something anybody chooses. As parents, I know you’ll support your child fully and in any way possible.
First of all, when it comes to food allergies, I want you to know that you’re not alone.
I’m here to help and share my expertise with you so you can allow your child a full life without as much worry. I’ve been where you are and I care.
I want you to know that food allergies are scary and worrisome, BUT there are ways to decrease your worry and keep your child safe too. So, if you decide that tree nut desensitization isn’t for you or your child, there’s no guilt and your child can still be safe without missing out on life!
So if your Allergist doesn’t recommend tree nut desensitization for medical reasons, or you can’t afford it, or you aren’t able to dedicate the time, cost, or emotional commitment, there’s no guilt. This post is not meant to make you feel guilty OR to influence you either way, but instead, I hope to share our experiences with it.
In the meantime, if you want to get help making the food allergy life less scary, be sure to check out some of my resources. You can go here to learn more.
As we know all too well, being a food allergy mom or parent isn’t for the faint of heart, but neither is tree nut desensitization. That said, we feel that it will be worth it in the end, and the risks outweigh the benefits.
A Note About Tree Nut Desensitization
Please note that every oral immunotherapy journey will be different based on the allergen(s), doctor, and your child’s personal medical circumstances. While there may be similarities, your journey will be different from ours. Please do not compare our journey to yours and understand that NONE of this information is meant to be medical advice or “the way to do OIT”. Please consult your doctor for any questions or medical advice because every person is different and your doctor will be able to recommend what’s best for you..
Can you desensitize a tree nut allergy?
We have been successful in our tree nut desensitization journey so far. Since we started, my daughter has become able to eat pistachios, cashews, brazil nuts, and almonds. We are still working on walnuts and will move on to pecans and hazelnuts when the time is right.
Our Tree Nut Allergy Desensitization Story
My daughter has had severe peanut and tree nut allergies since she was just 1 year old. She’s currently 15 years old. She also has a gluten sensitivity. When she was around 9-10, our Allergist recommended that we try tree nut desensitization or oral immunotherapy.
For the last few years, we’ve been working our way through oral immunotherapy for the tree nuts. It was only in the last 1.5 years that the doctor decided that we start oral immunotherapy for peanuts. We’re now working on both at the same time.
When my daughter was 8, our Allergist told us that she had come to the age where she was unlikely to outgrow her allergies to tree nuts and peanuts. He told us to prepare to have these allergies for a lifetime. The surprising thing was that at the next visit, one year later, he was instead talking about how things have changed and there was a new treatment called OIT allergy treatment.
He looked at our blood test numbers over the years and decided that we would be good candidates for the treatment if we were willing.
What Does Oral Immunotherapy Do?
Our Allergist explained that oral immunotherapy “trains” the immune system so that it no longer sees allergens as a threat.
We started by doing oral challenges to some of the tree nuts our Allergist thought my daughter would be least allergic to based on blood test numbers. For us the first was pistachios and then cashews. Our doctor was convinced we could do these oral food challenges at home. Even though it was scary to give my daughter a nut we had avoided at all costs before, we mustered up our courage and were glad we did, because it went great!
Later on, as we got to nuts that were potentially higher allergens for my daughter, we did the oral food challenges in the office.
Here’s how the nut challenges would usually play out.
They usually started by putting a bit of nut inside my daughter’s lip without swallowing, and next, she would swallow a tiny bit. Lastly, she would swallow a bit more. In between each application, there was a 15-20 minute break to see if any reactions would happen. It was all very controlled and the doctor would monitor all her vitals and watch closely for signs of reactions. Although both my daughter and I were nervous, we’ve had successful challenges so far. These tree nut desensitization challenges are required whenever we start a new nut, OR when the doctor wants to increase the dose of the nut.
After passing each challenge, we would then be instructed to have daily doses of each nut. It usually started with a small amount which was barely even visible and was about the size of a tip of a toothpick. My daughter took this dose daily for many months.
When we went back to the Allergist, sometimes he looked at her bloodwork and decided that we should stay at that dose longer. Once he was happy with the bloodwork numbers, then we would increase the daily amount of nuts.
To give you an idea, over 6 months, we’ve gone from 1 mm in diameter dose amounts and now up to 4mm in diameter. We’ll now stay at 4 mm for 3 months and then do another blood test. Our Allergist will then let us know if we can continue to up dose, OR stay at this amount.
At the time of writing this post, our doctor has warned us that he doesn’t know how long it will take in general to get through all of the tree nuts and peanuts. It could be another 3 years or more of challenges and daily doses before my daughter can actually eat all of the nuts. I was honestly surprised that it would take that long (and a little disheartened too). That said, we’ve had many heart-to-heart talks as a family, and in the end, we’re in this for the long haul.
Oral Immunotherapy Age
My daughter was 9 when we started. About a year before this, our Allergist told us that she would have these severe allergies for life and there was nothing else we can do. It just so happens that we ended up going back to the Allergist to ask questions, which was when he mentioned he was now doing this new treatment. It felt like God lead us to come back, and we were really excited, but a little nervous to start.
OIT Tree Nut Desensitization Side Effects
We have not seen many physical side effects since starting OIT. I think the biggest effects we’ve noticed are lifestyle-related.
For example, we need to keep doing the daily doses every day, and if we end up forgetting to do them for more than 3-5 days, OR we want to travel and we can’t do the doses for some reason, we need to go into the Allergist to do another “challenge” before we start again.
Also, if my daughter gets very sick with a cold, flu, or COVID, she is supposed to stop her daily doses. If she has to stop for longer than 3 days, we would need to see the Allergist and possibly re-challenge before starting again.
Exercise can’t be scheduled for at least an hour after each dose. She also needs to have someone around who knows how to manage anaphylaxis for at least an hour after each dose. This can be a little tricky to navigate when we have lots of activities going on. We find that taking the dose right when my daughter wakes up, usually works since there’s usually about an hour before we leave the house.
We also need to remember her dose amounts when traveling and find ways to keep it going consistently.
The amount of peanut/nut needs to be stable, and no more than the proper millimeter dose. For a long time, this meant she couldn’t have any additional traces of nuts and we had to act as if she had a full-on allergy and live just like we did before we started tree nut desensitization. That said, recently our doctor has approved us to have traces of tree nuts and peanuts. This means that we can now eat foods with the allergy statement “may contain tree nuts or peanuts”, as long as there aren’t any nuts or peanuts actually in the food. Honestly, this is our BIGGEST milestone yet. Just this small change has made a big difference in our lives!
There is anxiety that comes with this treatment. Especially in the beginning and every time we do an updose challenge. I don’t know if there’s any way to completely stop the anxiety, and I think that everybody will manage it differently. Either way, it’s important to understand that it’s there and talk about it. We’re armed with some really great coping strategies that make oral challenges much less scary.
How long does tree nut allergy desensitization take?
As I mentioned before, it has taken longer than we originally thought. We’ve been working on desensitizing tree nuts plus peanuts for the last 5-6 years. I think it’s because there are so many nuts that it’s almost like starting a new food for each nut.
For example, we started peanut specifically about 2-3 years ago and it’s estimated to take us 2-4 years longer at this time. Of course, it’s hard to say exactly how long it will actually be since we have not completed the journey yet. Be sure to ask your Allergist, BUT just be prepared that it may not be quick.
Also note that while we’re completing tree nut allergy desensitization, we must STILL live as if we have these allergies. So, that means we still need to:
be hyper-vigilant with traces of nuts (we were recently given the go-ahead to have traces of nuts, but we had to be vigilant for several years before).
talk to our teachers every year.
talk to friends and family before social events and birthday parties.
check with restaurants before dining.
I guess what I'm trying to say is that OIT allergy treatment is life-changing, but it doesn't happen overnight, and the lifestyle doesn't change while you're doing it.
Is Oral Immunotherapy/Tree Nut Desensitization Safe?
Please ask your Allergist to get a more detailed answer, but we have felt safe doing this treatment. The doctor is very careful and monitors us well every step of the way.
Just recently I learned that there was a death of a child who was doing OIT. I’m not going to lie, it broke my heart and shook me up inside. Knowing that those parents were just hoping for a better life for their child, just like I am, made my heart sad and fearful too.
It makes me question, and think twice about our decision to keep going. In full honesty, I’ve had these thoughts throughout our journey. So I want you to know that it does take mental resolve at times.
Other times, like when my daughter could begin to eat “traces” of tree nuts and peanuts, it feels exciting and life-changing! In general, it helps to focus on the end result, because that is the most exciting for everyone!
Also, it’s important to remember how RARE it is to have a reaction that causes death. The stats are very, very low and it’s important to think of this reality and not let our fears take over.
Final Thoughts
Tree nut allergy desensitization is a life-changing treatment for severe food allergies. We’ve been lucky enough to take part and begin this process for our daughter, and we’re excited about how it will improve her life. That said, it does take time, commitment, and mental resolve.
I hope this post has helped you understand a little bit more about our journey with oral immunotherapy and specifically tree nut desensitization. Leave a comment if you have any other questions I haven’t answered here!
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