Xolair, generally referred to by its generic title omalizumab, is a revolutionary therapy that’s radically altering the lives of individuals with extreme meals allergic reactions.
Ilana Dubrovsky, a nutritionist specializing in meals allergic reactions, discusses the progress of her nine-year-old daughter, who’s presently present process remedy, and the way it has reworked her life.
If you’re contemplating Xolair therapy for your self or a liked one or are merely trying to find a option to handle your meals allergic reactions, watch this video to be taught extra about it.
You could find a full transcript of the dialogue beneath.
Transcript
Dave Bloom, CEO, SnackSafely.com:
Hello, I’m Dave Bloom CEO of SnackSafely.com. We cowl all issues meals allergy, together with analysis into therapies and a remedy, therapies, developments in emergency epinephrine supply., faculty insurance policies, laws, clearly meals merchandise…. You title it — if it has something to do with meals allergic reactions, we cowl it and we invite you to observe alongside on our weblog.
Virtually precisely a 12 months in the past, we coated the FDA approval of a drug known as omalizumab for therapy of extreme meals allergic reactions. Now, you most likely know the drug below its commerce title, Xolair. Xolair was authorised some twenty years in the past for the therapy of average to extreme bronchial asthma, so it’s obtained a really lengthy monitor file and we have been very excited on the FDA’s approval and protecting the drug.
Eventually 12 months’s FAACT convention, I met Ilana Dubrovsky, a nutritionist who focuses on meals allergic reactions and whose younger daughter is presently present process Xolair therapy. So, to offer some context for our readers that may be contemplating Xolair therapy, we invited her to come back on, speak a bit bit about Xolair, how her daughter is faring and the way it’s modified her household dynamics.
Right here follows that dialog, and I hope you discover it informative. Thanks.
Ilana Dubrovski, Nutritionist and Meals Allergy Mother
Hello, Dave. Good to see you. How are you?
Dave:
It’s been some time. So good to reconnect. We’d love to listen to your story. First, inform us a bit bit about you, your loved ones, what you do.
Ilana:
Yeah, completely. So I feel initially, is I’m a meals allergy mother, as many others who frequent your web page and your weblog.
I’ve obtained two kids with a number of meals allergic reactions, and I even have meals allergic reactions myself. So my daughter is 9. She’s the toddler. My son is 11 and I feel our story is similar to others. It’s been crammed with plenty of meals fears, social isolation, quite a lot of self-doubt, crippling anxiousness. I’m positive these are key phrases that we hear from quite a lot of our meals allergy households.
Each for me and my husband. And we’ve spent quite a lot of holidays alone, missed birthday events, occasions of going to eating out of the home for years. I feel while you’re a dad or mum of kids with meals allergic reactions, the allergic reactions actually management the entire household’s life. And I gotta say, every thing modified when my daughter skilled… and I do know that is tough to share… however she skilled her second anaphylactic response, and, you understand, I used to be in a freeze in panic mode for years.
However this second modified every thing for me as a result of I lastly had the braveness to make use of the EpiPen after holding on to guilt for years. However as many might know, by the point you arrive on the ER, when you go to the ER, the signs recuperate. In order that second actually modified every thing. And really shortly thereafter, I really determined to alter my profession.
I used to be in nonprofit improvement and went again to highschool to grow to be a registered dietitian. And at present, I personal a non-public apply known as Allergy Nutritionist. I work with kids, mother and father, adults, total households, serving to them navigate and their very own meals allergy journey. And at present, I’m additionally excited to share, my children are doing nice. My son’s managing his allergic reactions and my daughter is on Xolair and has reached full meals freedom.
I like get the chills once I once I share that.
Dave:
As you must. I imply, it’s an incredible, super accomplishment. So, earlier than we get into that, inform us how folks can get in contact with you or in the event that they wish to interact your apply.
Ilana:
Oh, thanks. So, like I mentioned, the allergy apply is Allergy Nutritionist. So I’m at allergynutritionist.com. Additionally on Instagram, @allergy.nutritionist. Really easy.
Dave:
How did you identify that your daughter had meals allergic reactions?
Ilana:
So my son’s story was fairly typical. Six months outdated, began at daycare, began solids. We tried egg at residence, then despatched him to daycare and… hives head to toe. And it was like racing to get to daycare. Very scary state of affairs. Adopted up with an allergist. And you understand, we knew he had allergic reactions.
My daughter was trickier. So she started daycare at 4 months outdated. She was completely breastfed. She was having reactions earlier than any solids. And the massive query was, why was she growing head-to-toe hives? She had thick hives round her neck. I imply, it was simply… It was horrible.
However as you understand, in a daycare state of affairs, it’s crammed with cows milk, protein. It’s crammed with all various kinds of allergens. So she’s coming involved, dealt with by the caregivers coming involved with these allergens on a regular basis. So by 4 months, we obtained her evaluated with an allergist after visiting pressing care. And so they did pores and skin prick testing. I didn’t even notice it may very well be accomplished for a bit child, that early and get conclusive outcomes.
And she or he, at that time was recognized with the dairy and egg allergic reactions, which then ended up rising afterward. However these have been the massive ones for her.
Dave:
Are are these the one allergens that she’s allergic to.
Ilana:
So we later additionally came upon, sesame and a few tree nuts. Though I’ve a tree nut allergy… As I’ve shared, plenty of meals fears. A lot of avoidance within the family, so we by no means ended up trialing something till Xolair, however a number of tree nuts and the sesame for positive. After which the egg and dairy. My son has sesame allergic reactions, cashew and sunflower seeds, which might be good if that they had the identical allergens.
However the sunflower actually throws in a…
Dave:
It might be good since they didn’t have allergic reactions in any respect.
Ilana:
So yeah, I do know, I do know.
Dave:
And so what was life like earlier than you began Xolair? How have been issues progressing along with your daughter?
Ilana:
So issues have been actually, actually difficult. One other massive a part of the equation equation is she is an asthmatic. In order that was actually part of her well being historical past from the start.
We have been out and in of the ER for both allergic reactions or bronchial asthma or each. However I feel general there have been quite a lot of tears. My daughter desperately needed to slot in along with her mates and friends. I desperately needed to slot in with my very own friendship and and household, as a result of households oftentimes don’t actually perceive learn how to deal with somebody within the household with allergic reactions.
From a faculty perspective, we advocated for a one on one paraprofessional for meals allergic reactions to maintain her secure, and she or he obtained that since preschool. And this pair up adopted her up till just lately, about six months in the past. So for six years she was by no means alone within the faculty surroundings. We’ve obtained bullying to test off the record, sadly…
Dave:
We did a narrative about that at present.
Ilana:
Yeah. And she or he, a few 12 months in the past, she was instructed that she couldn’t go to somebody’s celebration as a result of she had allergic reactions. And like, to listen to that… Like, it makes me emotional even excited about it. However like to listen to that, like, breaks my coronary heart, you understand, having her friends on the lunch desk waving their meals in her face and antagonizing her.
It’s simply it’s terrible. There have been, in fact, no eating places in our in our life. And any social gathering that she did go to, she introduced Tupperware with secure, allergen-free pizza. In fact, birthday events should have the highest 9. So we obtained allergy-free pizza, allergy-free cupcakes. Yeah, it was isolating. I feel that’s the important thing phrase.
It was… It was actually anxiousness scary, and… isolating.
Dave:
I’m positive it was very tough. My, my daughter, who’s now… she’s nearly 24. Again when she was recognized, there was nothing, and only a few folks knew about meals allergic reactions. So our college was very supportive of her. She had a separate desk that she shared with one other boy who had tree nut allergic reactions.
My daughter has peanut and egg allergic reactions, and the lecturers have been very good; the college nurse was very good. They made it type of a beautiful factor to have the ability to sit and eat on the allergy desk. In order that they made it a really massive factor: Youngsters might rotate in so long as that they had… They didn’t have peanut butter or one thing that that may have an allergen in it. And it really labored very effectively.
However for lots of youngsters, it’s very, very tough. I utterly perceive.
Ilana:
Yeah, yeah. And I feel relying upon the college district, they’re afraid. The lecturers are terrified, particularly if there’s a 504 plan concerned. The lecturers are afraid, and I feel quite a lot of lecturers in districts are extra aware of the peanut and tree nut allergic reactions.
It’s a bit simpler to keep away from, however then you definitely cope with the egg and the dairy and the college meals and it’s simply it’s tough for anybody in a classroom to find out what’s secure, proper? So we simply have to… and as I’m positive you perceive, you simply have to assume nothing is secure on your kids.
Dave:
Precisely. Yeah, the Tupperware, the bringing the cupcake. My spouse did most of that… it’s tough. So inform me a bit bit about the way you stumbled on Xolair, who advised it. How did you get into the therapy?
Ilana:
Yeah, so we really discovered first concerning the biologics when my daughter was 4. So this was a number of years in the past. We have been making an attempt to handle her uncontrolled bronchial asthma, which has been a journey for positive.
We have been seeing physician Anna Nowak, so that may be a massive title in allergy. She is director of the pediatric allergy program at NYU Langone. Unbelievable practitioner, researcher and human. So we have been seeing her on the time, and she or he tell us that the biologics have been available on the market have been an possibility for our future. It wouldn’t have been coated below insurance coverage by that time. So it will have been very costly.
However to be trustworthy, the considered giving my daughter injections on the age of 4, I’m going proper like this. This might be a long run factor was horrifying. The considered a biologic. I didn’t even know what that meant, but it surely didn’t matter. I didn’t know what it meant and I used to be afraid.
So we simply type of, you understand, had the dialog. She offered the schooling and we continued our care. In fact, then COVID hit. So we noticed Nowak a number of years later when my daughter was seven. So, timeline, this was fall of 2023, proper earlier than Xolair was authorised by the FDA for meals allergy. So, like the proper time. Physician Nowak introduced it up once more particularly due to the bronchial asthma element, in fact.
And she or he mentioned, “You understand what? I’m going to be proper again. I’m going to step within the room subsequent door as a result of I’ve one other affected person.” And we discovered that a bit odd. However she comes again in and says to my daughter, and I: “If you need to talk to this household subsequent door, they’re really on Xolair and they’re… the kid has bronchial asthma and meals allergic reactions.” And, I welcomed the chance.
The kid was my daughter’s age and truly had extra allergic reactions than she had. Additionally an asthmatic… I feel I mentioned that. Frequented ICUs. I imply, this youngster actually had a tough journey as effectively. However listening to their story from them… Physician Nowak left the 4 of us within the room and listening to their journey on how the medicine managed this youngster’s bronchial asthma, even allowed them to go meals challenges… like we had identified upfront that this was a possible, chance on the medicine, was unbelievably outstanding.
And to have my daughter, seven years outdated, subsequent to me, listening to this, that made her a part of the choice making course of. So we determined to present it a attempt. And, we stay in new Jersey. We’re very near New York Metropolis, which is the place, Physician Nowak is, however we really had a brand new Jersey doctor who we had been adopted by… he’s our native allergist, and, that’s Physician Robert Klein, additionally an incredible human and allergy advocate.
I am keen on him. And so he really helped us navigate by means of the approval course of to get her on Xolair for bronchial asthma. Particularly since we would have liked to enter the workplace, for injections frequently, diminished journey time, and we remained with a trusted supplier, which is in fact really helpful.
Dave:
That’s fantastic! So, simply to step again, it was simpler to get your daughter on Xolair as she was asthmatic, as a result of it had already been authorised for bronchial asthma, in order that that type of greased the skids a bit bit.
Ilana:
Sure, sure. So she is on Xolair technically for bronchial asthma and has accomplished the job, I imply, this 12 months… So it helped her bronchial asthma and her meals allergic reactions. Appropriate. Properly, it’s authorised for bronchial asthma however has the additional good thing about meals allergic reactions.
Dave:
So, now it’s authorised for meals allergic reactions as effectively. Very thrilling. So, had you tried one thing, a remedy like OIT earlier than? Earlier than you tried Xolair?
Ilana:
We have now not tried every other therapies earlier than. We have been instructed that she wasn’t a candidate, for OIT. She wasn’t a candidate for SLIT. We had two anaphylactic reactions below our belts. We a number of hospitalizations on account of her bronchial asthma. Proper. I imply, this this youngster was topically reactive. We might stroll right into a Starbucks, sit down, and she or he… her coloration can be altering.
I imply, scary, scary scary. We by no means anticipated her to outgrow any of her allergic reactions. Like, this was presupposed to be our life. Physician Nowak, like I mentioned, is a researcher, so she all the time would hold us knowledgeable of therapy choices and trials. However, my daughter, was not a candidate for any of the therapies.
Dave:
Gotcha. So therapies… So how lengthy has she been on Xolair now?
Ilana:
So she’s been on a 12 months and 4 months and tells me she’s by no means going off of it as a result of she’s so grateful for the medicine.
Dave:
That’s that’s fantastic to listen to. So, speak a bit bit about your daughter now that she’s on Xolair. How is her life modified?
Ilana:
So that is an unbelievable youngster. So initially happening an injection, I feel it’s very scary for everybody. Let me simply put that on the market. So this little lady preps, will get all of her medicine prepared. She will get her, her wipes, her alcohol wipes. She will get the medicine, she places it out like she’s able to go.
Dave:
Let me cease for only a second. The needle is a matter, proper? So, was your daughter like: “Let’s go. Let’s go do that,” or was she a bit bit apprehensive at the start and wanted a bit coaxing?
Ilana:
So initially, after we met with this household at NYU, she was excited, regardless that we talked concerning the needle phobia, which going and getting pictures and getting blood attracts was a problem.
However I, like I mentioned, she was part of the decision-making course of. So after we went for the primary time to get the injection, she panicked, in fact, as a result of that was her. That was her response. That’s what she’s used to doing, proper? So we took our time. We had a really affected person nurse. It was in an outpatient clinic, not in a hospital setting. Very calm.
And I defined to her, like, I’m not forcing you to do that, however this isn’t going to be a one time factor. That is going to be long run, however I’m not going to power you. I don’t wish to maintain you down. I don’t wish to… You understand, this must be each of us. And she or he was very courageous.
Now she grabs all of her medicine when she is aware of it’s Xolair day. She will get two injections, each two weeks. And she or he’s been doing that since, over a 12 months in the past. There’s no worry. There’s no needle phobia. She lays down, she will get in a cushty place. She doesn’t even want one other gadget to calm her down. No stuffy.
I imply, she is simply… I really feel like Xolair has given her a lot confidence, however particularly within the medical realm. She is… She’s unbelievable.
Dave:
She’s a star! So it’s two injections each two weeks, and are they subsequent injections: one injection adopted by the opposite?
Ilana:
Sure. That’s that’s in order that’s one in every arm. And it’s subcutaneous. So, I really inject at residence for her. I used to be educated by the doctor. And so now we do it at residence. So two, one in every arm, subcutaneous, which implies proper beneath the pores and skin and we’ve obtained a routine. It’s fairly simple proper now.
Dave:
I simply wish to say for the folks, listening, subcutaneously means you’re not jabbing it into your thigh, into the muscle. It’s slightly below the pores and skin.
So how has life modified? What’s life like on your daughter now?
Ilana:
So she’s free consuming all of her allergens. Let me simply say that, we’ve remained structured so we ensure that she has cows milk and egg day by day. So far as, like, consuming, cows milk and having a scrambled egg or a tough boiled egg nearly day by day.
There’s no most dose as a result of, boy, that lady can eat pizza! My God. It’s unbelievable. So so far as her life altering, I imply, primary is her confidence. Like I mentioned, not solely from the medical facet and the needle phobia, however we’ve heard this from her lecturers since she began on Xolair, from relations.
She’s like a distinct youngster. She now not wants her one-on-one paraprofessional at college. So she’s already achieved a lot freedom and doesn’t seem totally different by having an grownup observe her round. She’s a softball participant. She performs all 12 months spherical so she will be able to run quicker and longer due to the bronchial asthma management, but in addition, once they have celebrations, she will be able to have the treats along with her crew.
She will go to birthday events and there’s no extra Tupperware. She additionally loves animals. And so animals have been, a serious set off for her bronchial asthma. Yeah. So we’ve a canine now who she loves. She used to should hold distance from all animals.
My household, they’ve a horse farm within the Catskill Mountains, which is in upstate New York.
And for her entire life, she couldn’t get close to the horses or get close to the barn as a result of it will set off an bronchial asthma flare that may lead us to have to come back again residence to pressing care, as a result of they’re, you understand, within the nation. And now she will be able to trip a horse… like this has been her dream. We’ve been to eating places handing her a menu and saying that she will be able to have no matter she likes, continues to blow me away.
As a household, we now not stay in a state of fixed worry. That nagging and anxious feeling has subsided. Life is completely totally different. She’s obtained some actually fantastic mates, and she or he was explaining to me final evening that when she goes and she or he tries to be part of her peer group once they’re having fun with, like, birthday events, they’re: “Mimi, Mia… you possibly can’t have that! You’ll be able to’t have that!” And she or he’s like…
Dave:
Properly, she’s obtained good mates! That’s nice!
Ilana:
Proper, proper. In order that they’re a help system, but it surely’s attention-grabbing as a result of now she simply desires to be a child with out allergic reactions. She doesn’t need that to be her life anymore. And you understand, I mentioned to her, I do know it’s arduous since you’ve been feeling totally different all alongside, however be grateful you’ve obtained mates which are searching for you.
Dave:
Great! That’s an incredible story. And so joyful on your daughter. I imply, that’s… you understand… that’s what all meals allergy mother and father are actually hoping for.
Fast query: Is it doubtless that she’ll be capable to come off of Xolair in some unspecified time in the future? So, is that this like OIT within the sense that so long as she retains the consumption, she’ll be okay? Or is that one thing they’re not they’re not even contemplating but.
Ilana:
So that’s the million greenback query. I feel, we’ve obtained two issues happening proper now. We’ve obtained her bronchial asthma, which I’m undecided what’s going to occur if she will get off Xolair. Physician Robert Wooden, who spearheaded the examine that helped get the FDA approval for Xolair, he hasn’t printed the remainder of the research displaying what really occurs clinically.
However by means of my very own apply, I’m conscious that people are in a position to get off the Xolair and maintain tolerance, which is why we’re making certain we’re retaining that upkeep dose in her weight loss plan. We’re going to be seeing Physician Nowak in a pair weeks, and that’s going to be a subject of dialog.
Physician Robert Klein is sort of a accomplice. And so we’re making an attempt to navigate this. And actually, I feel the largest hurdle goes to be making certain that our daughter goes to be snug getting off of it as a result of she is simply… she feels free. And I feel she’s afraid that if she will get off the Xolair, that freedom goes to finish and that she will be able to find yourself in a harmful state of affairs.
So, you understand, having her an element… I try to have her part of the dialog and empower her. To be a choice maker on this course of is absolutely vital to me and actually vital to me once I counsel my purchasers too. I need everybody to really feel like they’re concerned, even generally the little ones who don’t have as a lot of a voice. However we attempt.
Dave:
Terrific. Properly, let’s let’s wrap this all up. Do you’ve gotten any recommendation for households which are contemplating Xolair or haven’t thought of Xolair but? What recommendation are you able to give?
Ilana:
Yeah, so the very first thing that I share, even with my very own purchasers who’re curious and studying extra, is to not be afraid.
00:24:25:03 – 00:24:58:02
Unknown
Like I mentioned, there’s a lot worry round injections. Worry round how your youngster goes to deal with that, however they’re resilient. However I feel not being afraid and turning into knowledgeable… learn the literature, or not less than the summary, that are the summaries of the of the research. Perceive how the medicine works, but in addition communicate to different households who’ve used the medicine, study their expertise, as a result of that’s actually what what drove our determination, is listening to it from folks.
It didn’t really feel medical anymore. We have been studying about this human expertise from a baby. Like, it was nearly like us by means of a distinct lens. So, simply be keen to listen to different folks’s tales and ask questions.
And lastly, I feel it’s actually arduous to ascertain a life with out meals allergic reactions controlling your each transfer, each determination. However it’s doable. And there’s hope. And so I feel going with an open thoughts is most vital.
Dave:
Properly, I feel your story goes to present quite a lot of our readers hope, and that’s terrific. Congratulations, to begin with, on your daughter. It’s it’s an incredible accomplishment, and I can think about how significantly better she feels. However I may also think about how a lot how significantly better you are feeling now.
Ilana:
Oh, yeah, that she’s in a a lot safer place. Completely.
Dave:
I hope that you simply’ll come again and tell us how issues go. Give us an replace on how she’s progressing.
Ilana:
Yeah, I’ll completely try this. Thanks a lot. I actually admire you having me.
Dave:
Properly, thanks a lot, Ilana. It was a pleasure. And, and for you people on the market, we are going to submit, Ilana’s, contact data and you’ll interact along with her that means. Thanks a lot.
Ilana:
Thanks.
