Xolair, sometimes referred to by its generic name omalizumab, is a revolutionary treatment that is radically changing the lives of people with severe food allergies.
Ilana Dubrovsky, a nutritionist specializing in food allergies, discusses the progress of her nine-year-old daughter, who is currently undergoing therapy, and how it has transformed her life.
If you are considering Xolair treatment for yourself or a loved one or are simply searching for a way to manage your food allergies, watch this video to learn more about it.
You can find a full transcript of the discussion below.
Transcript
Dave Bloom, CEO, SnackSafely.com:
Hi, I’m Dave Bloom CEO of SnackSafely.com. We cover all things food allergy, including research into therapies and a cure, treatments, advancements in emergency epinephrine delivery., school policies, legislation, obviously food products…. You name it — if it has anything to do with food allergies, we cover it and we invite you to follow along on our blog.
Almost exactly a year ago, we covered the FDA approval of a drug called omalizumab for treatment of severe food allergies. Now, you probably know the drug under its trade name, Xolair. Xolair was approved some two decades ago for the treatment of moderate to severe asthma, so it’s got a very long track record and we were very excited at the FDA’s approval and covering the drug.
At last year’s FAACT conference, I met Ilana Dubrovsky, a nutritionist who specializes in food allergies and whose young daughter is currently undergoing Xolair treatment. So, to provide some context for our readers that might be considering Xolair treatment, we invited her to come on, talk a little bit about Xolair, how her daughter is faring and how it’s changed her family dynamics.
Here follows that conversation, and I hope you find it informative. Thanks.
Ilana Dubrovski, Nutritionist and Food Allergy Mom
Hi, Dave. Nice to see you. How are you?
Dave:
It’s been a while. So good to reconnect. We’d love to hear your story. First, tell us a little bit about you, your family, what you do.
Ilana:
Yeah, absolutely. So I think first and foremost, is I’m a food allergy mom, as many others who frequent your page and your blog.
I’ve got two children with multiple food allergies, and I also have food allergies myself. So my daughter is nine. She’s the little one. My son is 11 and I think our story is very similar to others. It’s been filled with lots of food fears, social isolation, a lot of self-doubt, crippling anxiety. I’m sure these are keywords that we hear from a lot of our food allergy families.
Both for me and my husband. And we’ve spent a lot of holidays alone, missed birthday parties, events of going to dining out of the house for years. I think when you’re a parent of children with food allergies, the allergies really control the whole family’s life. And I gotta say, everything changed when my daughter experienced… and I know this is difficult to share… but she experienced her second anaphylactic reaction, and, you know, I was in a freeze in panic mode for years.
But this moment changed everything for me because I finally had the courage to use the EpiPen after holding on to guilt for years. But as many may know, by the time you arrive at the ER, if you go to the ER, the symptoms recover. So that moment really changed everything. And very shortly thereafter, I actually decided to change my career.
I was in nonprofit development and went back to school to become a registered dietitian. And today, I own a private practice called Allergy Nutritionist. I work with children, parents, adults, entire families, helping them navigate and their own food allergy journey. And today, I’m also excited to share, my kids are doing great. My son’s managing his allergies and my daughter is on Xolair and has reached full food freedom.
I like get the chills when I when I share that.
Dave:
As you should. I mean, it’s a tremendous, tremendous accomplishment. So, before we get into that, tell us how people can get in touch with you or if they want to engage your practice.
Ilana:
Oh, thank you. So, like I said, the allergy practice is Allergy Nutritionist. So I’m at allergynutritionist.com. Also on Instagram, @allergy.nutritionist. So easy.
Dave:
How did you determine that your daughter had food allergies?
Ilana:
So my son’s story was pretty typical. Six months old, started at daycare, started solids. We tried egg at home, then sent him to daycare and… hives head to toe. And it was like racing to get to daycare. Very scary situation. Followed up with an allergist. And you know, we knew he had allergies.
My daughter was trickier. So she began daycare at four months old. She was exclusively breastfed. She was having reactions before any solids. And the big question was, why was she developing head-to-toe hives? She had thick hives around her neck. I mean, it was just… It was horrible.
But as you know, in a daycare situation, it’s filled with cows milk, protein. It’s filled with all different types of allergens. So she’s coming in contact, handled by the caregivers coming in contact with these allergens all the time. So by four months, we got her evaluated with an allergist after visiting urgent care. And they did skin prick testing. I didn’t even realize it could be done for a little baby, that early and get conclusive results.
And she, at that point was diagnosed with the dairy and egg allergies, which then ended up increasing later on. But those were the big ones for her.
Dave:
Are are those the only allergens that she’s allergic to.
Ilana:
So we later also found out, sesame and some tree nuts. Although I have a tree nut allergy… As I’ve shared, lots of food fears. Lots of avoidance in the household, so we never ended up trialing anything until Xolair, but several tree nuts and the sesame for sure. And then the egg and dairy. My son has sesame allergies, cashew and sunflower seeds, which would be nice if they had the same allergens.
But the sunflower certainly throws in a…
Dave:
It would be nice since they didn’t have allergies at all.
Ilana:
So yeah, I know, I know.
Dave:
And so what was life like before you started Xolair? How were things progressing with your daughter?
Ilana:
So things were really, really challenging. Another big part of the equation equation is she is an asthmatic. So that was certainly a part of her health history from the beginning.
We were in and out of the ER for either allergic reactions or asthma or both. But I think overall there were a lot of tears. My daughter desperately wanted to fit in with her friends and peers. I desperately wanted to fit in with my own friendship and and family, because families oftentimes don’t really understand how to handle someone in the family with allergies.
From a school perspective, we advocated for a one on one paraprofessional for food allergies to keep her safe, and she got that since preschool. And this pair up followed her up until recently, about six months ago. So for six years she was never alone in the school environment. We’ve got bullying to check off the list, unfortunately…
Dave:
We did a story about that today.
Ilana:
Yeah. And she, about a year ago, she was told that she couldn’t go to someone’s birthday party because she had allergies. And like, to hear that… Like, it makes me emotional even thinking about it. But like to hear that, like, breaks my heart, you know, having her peers at the lunch table waving their food in her face and antagonizing her.
It’s just it’s awful. There were, of course, no restaurants in our in our life. And any party that she did go to, she brought Tupperware with safe, allergen-free pizza. Of course, birthday parties have to have the top nine. So we got allergy-free pizza, allergy-free cupcakes. Yeah, it was isolating. I think that’s the key word.
It was… It was really anxiety provoking, and… isolating.
Dave:
I’m sure it was very difficult. My, my daughter, who’s now… she’s almost 24. Back when she was diagnosed, there was nothing, and very few people knew about food allergies. So our school was very supportive of her. She had a separate table that she shared with another boy who had tree nut allergies.
My daughter has peanut and egg allergies, and the teachers were very smart; the school nurse was very smart. They made it sort of a wonderful thing to be able to sit and eat at the allergy table. So they made it a very big thing: Kids could rotate in as long as they had… They didn’t have peanut butter or something that that might have an allergen in it. And it actually worked very well.
But for a lot of kids, it’s very, very difficult. I completely understand.
Ilana:
Yeah, yeah. And I think depending upon the school district, they’re afraid. The teachers are terrified, especially if there’s a 504 plan involved. The teachers are afraid, and I think a lot of teachers in districts are more familiar with the peanut and tree nut allergies.
It’s a little easier to avoid, but then you deal with the egg and the dairy and the school meals and it’s just it’s difficult for anyone in a classroom to determine what’s safe, right? So we just need to… and as I’m sure you understand, you just need to assume nothing is safe for your children.
Dave:
Exactly. Yeah, the Tupperware, the bringing the cupcake. My wife did most of that… it’s difficult. So tell me a little bit about how you came upon Xolair, who suggested it. How did you get into the treatment?
Ilana:
Yeah, so we actually learned first about the biologics when my daughter was four. So this was several years ago. We were trying to manage her uncontrolled asthma, which has been a journey for sure.
We were seeing doctor Anna Nowak, so that is a big name in allergy. She is director of the pediatric allergy program at NYU Langone. Incredible practitioner, researcher and human. So we were seeing her at the time, and she let us know that the biologics were on the market were an option for our future. It wouldn’t have been covered under insurance by that point. So it would have been very expensive.
But to be honest, the thought of giving my daughter injections at the age of four, I’m going right like this. This would be a long term thing was frightening. The thought of a biologic. I didn’t even know what that meant, but it didn’t matter. I didn’t know what it meant and I was afraid.
So we just sort of, you know, had the conversation. She provided the education and we continued our care. Of course, then COVID hit. So we saw Nowak several years later when my daughter was seven. So, timeline, this was fall of 2023, right before Xolair was approved by the FDA for food allergy. So, like the perfect time. Doctor Nowak brought it up again especially because of the asthma component, of course.
And she said, “You know what? I’m going to be right back. I’m going to step in the room next door because I have another patient.” And we found that a little odd. But she comes back in and says to my daughter, and I: “If you would like to speak to this family next door, they are actually on Xolair and they are… the child has asthma and food allergies.” And, I welcomed the opportunity.
The child was my daughter’s age and actually had more allergies than she had. Also an asthmatic… I think I said that. Frequented ICUs. I mean, this child really had a rough journey as well. But listening to their story from them… Doctor Nowak left the four of us in the room and listening to their journey on how the medication controlled this child’s asthma, even allowed them to pass food challenges… like we had known in advance that this was a potential, possibility on the medication, was unbelievably remarkable.
And to have my daughter, seven years old, next to me, listening to this, that made her part of the decision making process. So we decided to give it a try. And, we live in new Jersey. We’re very close to New York City, which is where, Doctor Nowak is, but we actually had a new Jersey physician who we had been followed by… he is our local allergist, and, that’s Doctor Robert Klein, also an amazing human and allergy advocate.
I adore him. And so he actually helped us navigate through the approval process to get her on Xolair for asthma. Especially since we needed to go into the office, for injections regularly, reduced travel time, and we remained with a trusted provider, which is of course recommended.
Dave:
That’s wonderful! So, just to step back, it was easier to get your daughter on Xolair as she was asthmatic, because it had already been approved for asthma, so that that sort of greased the skids a little bit.
Ilana:
Yes, yes. So she is on Xolair technically for asthma and has done the job, I mean, this year… So it helped her asthma and her food allergies. Correct. Well, it’s approved for asthma but has the extra benefit of food allergies.
Dave:
So, now it’s approved for food allergies as well. Very exciting. So, had you tried something, a therapy like OIT before? Before you tried Xolair?
Ilana:
We have not tried any other therapies before. We were told that she wasn’t a candidate, for OIT. She wasn’t a candidate for SLIT. We had two anaphylactic reactions under our belts. We several hospitalizations due to her asthma. Right. I mean, this this child was topically reactive. We would walk into a Starbucks, sit down, and she… her color would be changing.
I mean, scary, scary scary. We never expected her to outgrow any of her allergies. Like, this was supposed to be our life. Doctor Nowak, like I said, is a researcher, so she always would keep us informed of treatment options and trials. But, my daughter, was not a candidate for any of the treatments.
Dave:
Gotcha. So treatments… So how long has she been on Xolair now?
Ilana:
So she’s been on a year and four months and tells me she’s never going off of it because she’s so grateful for the medication.
Dave:
That’s that’s wonderful to hear. So, talk a little bit about your daughter now that she’s on Xolair. How is her life changed?
Ilana:
So this is an unbelievable child. So initially going on an injection, I think it’s very scary for everyone. Let me just put that out there. So this little girl preps, gets all of her medication ready. She gets her, her wipes, her alcohol wipes. She gets the medication, she puts it out like she’s ready to go.
Dave:
Let me stop for just a second. The needle is an issue, right? So, was your daughter like: “Let’s go. Let’s go do this,” or was she a little bit worried at the beginning and needed a little coaxing?
Ilana:
So initially, when we met with this family at NYU, she was excited, even though we talked about the needle phobia, which going and getting shots and getting blood draws was a challenge.
But I, like I said, she was a part of the decision-making process. So when we went for the first time to get the injection, she panicked, of course, because that was her. That was her reaction. That’s what she’s used to doing, right? So we took our time. We had a very patient nurse. It was in an outpatient clinic, not in a hospital setting. Very calm.
And I explained to her, like, I am not forcing you to do this, but this is not going to be a one time thing. This is going to be long term, but I’m not going to force you. I don’t want to hold you down. I don’t want to… You know, this has to be both of us. And she was very brave.
Now she grabs all of her medication when she knows it’s Xolair day. She gets two injections, every two weeks. And she’s been doing that since, over a year ago. There’s no fear. There’s no needle phobia. She lays down, she gets in a comfortable position. She doesn’t even need another device to calm her down. No stuffy.
I mean, she is just… I feel like Xolair has given her so much confidence, but especially in the medical realm. She is… She’s unbelievable.
Dave:
She’s a star! So it’s two injections every two weeks, and are they subsequent injections: one injection followed by the other?
Ilana:
Yes. That’s that’s so that’s one in each arm. And it’s subcutaneous. So, I actually inject at home for her. I was trained by the physician. And so now we do it at home. So two, one in each arm, subcutaneous, which means right underneath the skin and we’ve got a routine. It’s pretty easy right now.
Dave:
I just want to say for the people, listening, subcutaneously means you’re not jabbing it into your thigh, into the muscle. It’s just under the skin.
So how has life changed? What is life like for your daughter now?
Ilana:
So she’s free eating all of her allergens. Let me just say that, we have remained structured so we make sure that she has cows milk and egg daily. As far as, like, drinking, cows milk and having a scrambled egg or a hard boiled egg almost daily.
There’s no maximum dose because, boy, that girl can eat pizza! My God. It is unbelievable. So as far as her life changing, I mean, number one is her confidence. Like I said, not only from the medical side and the needle phobia, but we’ve heard this from her teachers since she started on Xolair, from family members.
She’s like a different child. She no longer needs her one-on-one paraprofessional at school. So she’s already achieved so much freedom and doesn’t appear different by having an adult follow her around. She’s a softball player. She plays all year round so she can run faster and longer because of the asthma control, but also, when they have celebrations, she can have the treats with her team.
She can go to birthday parties and there’s no more Tupperware. She also loves animals. And so animals were, a major trigger for her asthma. Yeah. So we have a dog now who she loves. She used to have to keep distance from all animals.
My family, they have a horse farm in the Catskill Mountains, which is in upstate New York.
And for her whole life, she couldn’t get near the horses or get near the barn because it would trigger an asthma flare that would lead us to have to come back home to urgent care, because they’re, you know, in the country. And now she can ride a horse… like this has been her dream. We’ve been to restaurants handing her a menu and saying that she can have whatever she likes, continues to blow me away.
As a family, we no longer live in a state of constant fear. That nagging and anxious feeling has subsided. Life is totally different. She’s got some really wonderful friends, and she was explaining to me last night that when she goes and she tries to be a part of her peer group when they’re enjoying, like, birthday parties, they’re: “Mimi, Mia… you can’t have that! You can’t have that!” And she’s like…
Dave:
Well, she’s got good friends! That’s great!
Ilana:
Right, right. So they’re a support system, but it’s interesting because now she just wants to be a kid without allergies. She doesn’t want that to be her life anymore. And you know, I said to her, I know it’s hard because you’ve been feeling different all along, but be grateful you’ve got friends that are looking out for you.
Dave:
Wonderful! That’s a great story. And so happy for your daughter. I mean, that’s… you know… that’s what all food allergy parents are really hoping for.
Quick question: Is it likely that she’ll be able to come off of Xolair at some point? So, is this like OIT in the sense that as long as she keeps the intake, she’ll be okay? Or is that something they’re not they’re not even considering yet.
Ilana:
So that is the million dollar question. I think, we’ve got two things going on right now. We’ve got her asthma, which I’m not sure what’s going to happen if she gets off Xolair. Doctor Robert Wood, who spearheaded the study that helped get the FDA approval for Xolair, he hasn’t published the rest of the studies showing what actually happens clinically.
But through my own practice, I am aware that individuals are able to get off the Xolair and sustain tolerance, which is why we’re ensuring we’re keeping that maintenance dose in her diet. We are going to be seeing Doctor Nowak in a couple weeks, and that is going to be a topic of conversation.
Doctor Robert Klein is quite a partner. And so we’re trying to navigate this. And really, I think the biggest hurdle is going to be ensuring that our daughter is going to be comfortable getting off of it because she is just… she feels free. And I think she’s afraid that if she gets off the Xolair, that freedom is going to end and that she can end up in a dangerous situation.
So, you know, having her a part… I try and have her a part of the conversation and empower her. To be a decision maker in this process is really important to me and really important to me when I counsel my clients too. I want everyone to feel like they’re involved, even sometimes the little ones who don’t have as much of a voice. But we try.
Dave:
Terrific. Well, let’s let’s wrap this all up. Do you have any advice for families that are considering Xolair or haven’t considered Xolair yet? What advice can you give?
Ilana:
Yeah, so the first thing that I share, even with my own clients who are curious and learning more, is not to be afraid.
00:24:25:03 – 00:24:58:02
Unknown
Like I said, there’s so much fear around injections. Fear around how your child is going to handle that, but they are resilient. But I think not being afraid and becoming informed… read the literature, or at least the abstract, which are the summaries of the of the studies. Understand how the medication works, but also speak to other families who’ve used the medication, learn about their experience, because that’s really what what drove our decision, is hearing it from people.
It didn’t feel clinical anymore. We were learning about this human experience from a child. Like, it was almost like looking at us through a different lens. So, just be willing to hear other people’s stories and ask questions.
And lastly, I think it’s really hard to envision a life without food allergies controlling your every move, every decision. But it is possible. And there’s hope. And so I think going with an open mind is most important.
Dave:
Well, I think your story is going to give a lot of our readers hope, and that’s terrific. Congratulations, first of all, for your daughter. It’s it’s a tremendous accomplishment, and I can imagine how much better she feels. But I can also imagine how much how much better you feel now.
Ilana:
Oh, yeah, that she’s in a much safer place. Absolutely.
Dave:
I hope that you’ll come back and let us know how things go. Give us an update on how she’s progressing.
Ilana:
Yeah, I will absolutely do that. Thank you so much. I really appreciate you having me.
Dave:
Well, thanks so much, Ilana. It was a pleasure. And, and for you folks out there, we will post, Ilana’s, contact information and you can engage with her that way. Thanks so much.
Ilana:
Thank you.
