#the last allergist wants me to get a blood test DURING an allergic reaction
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Hey y'all! The merry-go-round of doctors* I am on seems to be cycling back around towards an allergist again, and I have a question for y'all because idk how to word this for doctors: How do you word "if it walks like and allergy and quacks like an allergy it's an allergy" to an allergist? Less flippantly, I have allergy symptoms that multiple doctors have said allergies should not be able to cause. Mainly, my first allergy symptom is high blood pressure**, which if left untreated will progress to migraines, stomach issues, and eventually a bad blood pressure crash***. I have been told allergies do not raise blood pressure, but mine is caused by specific foods most of the time and taking a benadryl stops the reaction, so I have no idea what else it could be? But my main food allergy is acetic acid/vinegar, which I have also had multiple doctors tell me it is not possible to be allergic to
*the "you have a problem but not one I can fix try this kind of specialist instead" mobile **130s/80s, not super high, but high for me ***80s/40s
#the person behind the yarn#medical mention#I do sometimes have allergic reactions caused by acute stress or anger#so that's. fun. pretty sure that's MCAS though#but like idk how to convince doctors it's allergies#I know they might not be IgE mediated allergies but still allergies right? if benadryl fixes them?#most people don't get like two day headaches from eating peas?#I do think coconut might be my one true IgE mediated allergy on account of the immediate wheezing when I eat it#but the rest I fully admit are weird#the last allergist wants me to get a blood test DURING an allergic reaction#but I have learned the magic words about that one!#the magic words are: I tested on the very high end of normal tryptase levels when NOT having an allergic reaction#and my main severe allergic reaction symptom is uncontrollable vomiting. which makes it difficult for me to get that bloodwork done#so far I've only said it to like three doctors and every single one was like yes! fair! understandable!
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Tuesday I have my endoscopy & colonoscopy at 6am, fun! They're doing it to figure out why I was bleeding over a month ago, but the main reason for the Dr is to make sure I'm not developing cancer.
Because I have extensive fam history & though my initial appt was allergy related - the digestive Dr is like, "I'm more concerned w/this. Like we'll do it because allergies, but that's not why I want to do it."
Which with the allergies I recently developed an allergy to - ibuprofen, tuna (don't know WHICH kind & have stayed away from canned/to-go packets), & my basic blood & mouth swab allergy test says - I'm apparently super allergic to shrimp, but haven't had an adverse reaction (yet).
ALSO, I have started putting two & two together from my last period. But I break out in major hives & have several pre-anaphylactic symptoms during my first & second day of starting my period.
Which (might) mean I'm either (recently) allergic to excessive amounts of hormones now, my lowered menstrual immunities puts my environmental allergies into overdrive, or I'm allergic to elevated hormones AND peri menopausal. I honestly would not mind early menopause. My tubes are permanently tied, had my babies & menstruation is an annoyance at this point. Bring it on.
I seriously doubt I have cancer just explaining the 'why' to the endoscopy & colonoscopy. Especially since I'm 31 & not due for one in 3yrs.
Lastly, I have to get the colonoscopy & endoscopy before IHS will give me an appt to an allergist. So they can rule out cancer, fecal obstruction, & stress ulcers.
This has been a three almost four month saga, with two emergency room visits (1st one I had to get an epipen shot because my throat was swelling shut), multiple meds, & doc visits. During this time I have been playing the game, "I'm gonna eat/take this & hope I don't die."
When I cut out tuna & ibuprofen - the rashes stopped outside of the first two days of my period.
Btw I'm prob gonna be cranky af tomorrow because - colon cleanser (Toilet Bound Dezi-kun!) & strictly liquid diet until after my appt.
#medical#procedure#cancer#allergies#anaphylaxis#anaphylactic#period#menstrual#menstruation#menopause#perimenopause#hormones#epipen#health#IHS#native#Indian Health Services#colonoscopy#endoscopy#science
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i’m sorry BLOOD TESTS FOR ALLERGENS ARE LESS ACCURATE???
I spent MONTHS fighting with an allergist who insisted over and over again that I ~can’t possibly~ be allergic to birch and ragweed despite having severe allergy symptoms during their respective pollen seasons every single year, because the blood test was negative. She said there was no point doing a scratch test because blood tests are “more accurate”. And the blood tests only showed grass, dust, and shrimp allergies.
I wanted to try allergy shots because I react badly to most antihistamines (it was a fun day when I took an OTC antihistamine for the first time and immediately started wheezing and breaking out in a rash), and the ones I don’t have a bad reaction to, don’t work. There are allergy shots for birch pollen, and the fucking allergist refused to let me try them because ~the blood work says you’re not allergic~.
When I last had a scratch test, I had a reaction at almost all of the test sites (every type of pollen, dust, mold, cockroaches, eggs, shrimp and shellfish, feathers... almost everything except dogs and cats). All this time I’ve been assuming I just have shit luck and am allergic to everything on earth. (And the gods decided my life was too easy so they threw IBS, GERD, ADHD, autism, and random but near-constant as-yet-unexplained joint pain into the mix as a bonus.) Now I’m starting to wonder if I need to be looking into these other conditions... If I can even get a doctor to take me seriously enough to send me for tests... All my tests for everything always seem to come back normal, so they treat me like a hypochondriac now despite my swollen joints and visible eczema and the horrific sounds my knees make...
Hello! :3 No worries if you can't/don't have the spoons/don't want to answer! But I figured I'd ask! Do you have any idea what's up with "have allergic reactions to certain things, except all of the blood work came back full-on negative to everything"? It's so baffling, and neither me nor the allergist have any idea why I have reactions if I'm not allergic, unless somehow the blood work was all wrong.
So, blood testing is not always as accurate as a skin scratch test, although it is safer as it avoids potentially triggering a bad allergic reaction. If you don’t experience a terrible reaction, you might want to ask for a skin scratch test.
I test negative on a lot of blood work when it comes to allergies, but the allergies show up on a skin scratch test with alarming alacrity.
But then I also react because the mast cells in my skin are hyperactive, which is also another reason for why allergens might not show up on a blood test. (If you suffer from dermatographia, that is an indication of mast cell hyperactivity in the skin.)
When they test for allergies they are testing for IgE-mediated allergic reactions. With any sort of mast cell instability, people with the condition often test negative for IgE reactions because that’s not the mechanism that causes the mast cells to destabilize. (There’s several other chemicals/hormones other than histamine in the body that can cause mast cells to destabilize, so I can’t really narrow down what causes the mast cell degranulation process because we don’t always know.)
Before the panic sets in, It’s possible to have mast cell instability without having full blown MCAS/D. It’s now thought that mast cell instability is the possible cause for IBS, which many people suffer from without developing anaphylactic reactions.
You don’t mention what the allergies are or what they affect, but using mast cell stabilizers might be of benefit to you, and it can look as simple as taking an h1 histamine blocker, such as Zyrtec with an h2 blocker like Pepcid once a day. If you are in the US, both are available otc, but you should of course discuss this with your doctor first before making any medication changes.
You may also want to look into oral allergy syndrome if your symptoms are only when you eat certain foods. With the crazy high pollen counts atm, many people are experiencing oral allergy syndrome for the first time. It’s basically a cross reaction to pollen and the body mistaking the food for that pollen. It’s why sometimes people with latex allergies react to eating bananas without having a true banana allergy—they’re in the same family and the body can’t always distinguish between that and ingesting the actual allergy.
Anyway, I hope that helps and you can get to the bottom of what is happening. Best of luck.
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Traditional Japanese Doctors--ugh
Thought I would share what a visit is like with my doctor. This is kind of typical, especially when we are concerned about something or want a change/adjustment/whatever. If we just come in, check in, get out and get our meds, we have no real issue.
I want to preface this by saying that this doctor came with very good reviews. He is one of the top pulmonary/lung specialists for asthma in all of Japan. He has given lectures, taught most other doctors, lots of books, awards, etc etc. I am guessing he is around 50-60 years of age, his son also has a practice (I think). My husband didn't choose this guy lightly. He is also the only nearest practitioner for...well, miles. The next one is about a 2 hour drive--ONE way. To be on insurance, we have to go as often as the doctor feels is necessary, or every month for refill reasons or something like (I am a little uncertain of the details). There is a large hospital in the big city a little closer that calls in specialists from the prefecture--but that means we have a good chance of running into him again. Talk about embarrassing. If we go somewhere else, we burn a bridge--and I am not willing to do that just yet. We may still seek a second opinion just for the second opinion, though. Japan is also really weird on the hierarchy thing within the medical system, and there is a very tight in-bed going on between insurance, pharmacy and the doctors. AS you can see, this is very complex. So there is a little background. Been going to this guy for about five years now, I think.
Okay, so I go in yesterday feeling not so hot. My peak flow was around 570--a good number for me--but I was feeling. Something. My breathing was slow, but shallow. Inhale was less than exhale, but the exhale was pretty long. Extending the exhale or shallowing my breath didn't help, but I got some relief from my reliever. So I let the doctor know that I wasn't feeling to good. Then, I decided to ask, in my broken Japanese, why I can have asthmatic symptoms even though my peak flow was good. I also asked him about why I can wake up feeling like I run a marathon or did hard exercise in the middle of the night.
Now, I know the answers to these. Between a good book, lots of online articles, and forums like this website, I know that the former is due to small airways acting up while larger ones are still okay. I took choir and singing for years--my breath control is awesome, even if my lung functions are lacking. I also know that the sleeping thing is basically me having a flare in the middle of the night and sleeping through it. But I wanted to see what the doctor said. I guess you could call it a small test. I also tried to make this clear that I have noticed this for YEARS, not just recently. I think that got lost in translation.
For the former, about high peak flow but options--he did this...hmm, good question thing. He didn't have an answer. He took out the SpO2 device to check my oxygen. On my device at home, I usually stick at 98 and occasionally dip to 97. I almost never go to 99. There is a 1 point difference between the doctor and mind. His says 99 for my 98. Today, it said 100--so he said hyperventilation. For both questions. ::insert eye roll here::
I know that arguing won't do anything, but I tried to let him know that I really don't have any hyperventilation feelings. It is *different*. My breath may be shallow, but it is really really slow. No headache, no tingling--and my breath only quickens when I do stuff. I wanted to explain in more detail, but that was the best I could do.
So he says, okay--we how about we do a spirometer and pulmonary test. Yay. I don't know how to explain all the tests. Basically, the first is some kind of breath control (something I have always done pretty easily). You blow in and maintain your breath so that the marker is in the green zone. There was another inhale/exhale test. Then I put my mouth around this device that did a weird pulsing. That always feels weird, I hate it. Then I did some more in and out breaths. These had a up-down graph (up for inhale, down for exhale) and a spiral. I did notice that on this one, there was a number up in the right hand corner that--i think--said temperature. The number was something like 29--well, over 20 and under 30--this will be important in a minute. Anyway, needless to say, doing the test was rough. I had to take a LOT of breaks, and I coughed horrible after we finished (and a few times between takes during this final bit). then I got a breathing medicine thing. Not sure what it is--you hold this little glass vial and inhale a kind of steam. This stuff usually helps a lot.
In we go. The doctor says that my lung functions have improved greatly over the last year! Yay! Well, I am hesitant. I really want him to do this in the winter, when I am really bad. But I didn't say anything at this time. I think he said the other tests indicated a slight hyperventilation And then--
Now this is where that temperature thing is important. He looked at that number and basically was like--wow, something IS going on here. This is too high. It is usually only like that when there is some allergen irritating the lungs. So he explains that I am basically sitting on a volcano. The allergen hasn't fully manifested as an allergic reaction, but it is close. This is probably why I felt like crap.
You have no idea how badly I wanted to say "See, I TOLD you so. I told you something was wrong and it wasn't hyperventilation!"
So he took some blood to send to a lab to check for what the allergy might be and set me up on an IV plus a pred for the next couple of days to keep it under control.
Of course, a wonderful long-time friend asked an important question that I didn't even think about--why a blood test? Why didn't he do a prick test, or if he isn't an allergist (which he isn't) why not refer you? Excellent question. I don't have the answer. But if we don't get a good answer from the blood work, or even if we do, we will probably refer ourselves if he doesn't.
Right now, there are a couple of possibly candidates for the allergen. First up, and highest on the suspect list, is my dog. We got him almost two years ago and I didn't show any issues until recently. Had dogs and cats all my life, so this becoming an allergy would really really suck. I love animals. Another possibility is the left over stirring of dust and mold spores from the remodel. Lower on the list are things like pollen and whatnot. I also went on a long trip around Japan with my mother--so something could have come in from that. Dunno.
Meanwhile, we are adjusting how I interact with my dog until we get a clear idea of how to deal with this. I wear a mask with him, we are increasing vacuuming, I have a smock to wear when playing/interacting with him, no more upstairs for him, and we willy try to increase his brushing. Also, wash hands a lot.
We will find out for sure what the blood results are next week. Then we will go from there. But yeah, this is the kind of battle I have to fight. Having a monopoly like this is horrible--no accountability, no need to stay up on the latest research, etc, and no choices for the patients. He may be good for old people who are used to the traditional: he is a doctor, no questions, just do what he says. Not good for someone like me who, the only reason I was found to have asthma was because I ASKED to be tested. Seems like I have to be in charge here instead of the doctor :/
Right now, I am feeling pretty good--but the last few days I seem to go down-hill in the evening, so we will see how I am later today after classes and whatnot. Luckily, I only have four classes today with a free afternoon.
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Jacob Kingsley, 12, visits a bakery that was off-limits before he began oral immunotherapy for a peanut allergy.
A revolutionary treatment for allergies to peanuts and other foods is going mainstream—but do the benefits outweigh the risks?
New research out this week suggests that antibodies to peanut protein appear in the gut, which could help explain the allergy’s origins. Check out this 2018 News from Science Feature that explored the benefits and risks of novel treatment.
— By Jennifer Couzin-Frankel, Staff Writer | Oct. 18, 2018 | ScienceMag.Org
Jacob Kingsley was 9 years old when he was handed the poison he'd shunned since before he could walk and told to swallow it as medicine. Obediently, he gulped down a few micrograms of peanut flour—less than 1/1000 of a peanut—diluted in grape Kool-Aid. His mother and a nurse hovered, ready to inject him with epinephrine if an itchy throat and wheezing struck.
Jacob's mother, Jennifer Kingsley, had driven him 2 hours from their home in Columbus to this doctor's office in Cincinnati, Ohio, for the first of dozens of sessions of peanut immunotherapy. Giving Jacob gradually increasing doses of peanuts, she hoped, would desensitize his immune system.
It's a strategy Kingsley hadn't pursued until she reached her breaking point. A year earlier, Jacob had swallowed a handful of popcorn that, unbeknownst to him, was laced with peanut product. He suffered a particularly frightening reaction: two bouts of intense symptoms about 6 hours apart. The incident marked his second peanut-related trip to the emergency room, and Kingsley was terrified that the next encounter could be fatal. "I decided, ‘I can't live like this,’" she says. "I was desperate."
As Jacob sat through the hourslong appointment in Cincinnati, playing video games and swigging increasing doses of peanut-spiked Kool-Aid, he joined legions of children writing food allergy's next chapter. Today, more than 3000 people worldwide, most of them children, have undergone peanut immunotherapy, with the goal of protecting them if they accidentally encounter the food. Other children are trying immunotherapy for allergies to milk, eggs, and tree nuts. Some, like Jacob, get treatment in allergists' offices, where doctors share protocols informally and in published papers. Other children have enrolled in clinical trials, including those run by two companies racing to introduce a peanut-based capsule or skin patch. Both plan to apply for approval from the Food and Drug Administration (FDA) this year. The agency's blessing would dramatically boost immunotherapy's credibility and reach.
In a field that for decades has had nothing to offer patients beyond avoidance, immunotherapy marks a seismic shift. As it edges closer to mainstream, "There's mixed feelings, with a whole range of enthusiasm," says Corinne Keet, a pediatric allergist-immunologist at Johns Hopkins Medicine in Baltimore, Maryland. Fear that it might cause harm is mingling with euphoria that children living constrained lives could be set free. Doctors who offer immunotherapy describe families eating in Chinese restaurants for the first time and home-schooled children rejoining their peers.
Like many medical firsts, the therapy is not perfect. "This is version 1.0," says Brian Vickery, a pediatric allergist-immunologist at Emory University in Atlanta. He has conducted peanut immunotherapy trials and worked for 2 years at Aimmune Therapeutics, headquartered in Brisbane, California, one of the companies whose products are nearing approval. Physicians fret about oral immunotherapy's rigors—treatment must continue indefinitely—and its risks, which include the same allergic reactions it aims to prevent. Last year in Japan, a child suffered brain damage during a trial of immunotherapy for milk allergies.
Meanwhile, physicians on the front lines are navigating hazy science. No one knows exactly how immunotherapy works or who's most likely to be helped or hurt by it. "For me," Keet says, "it's really not clear for an average child with peanut allergy whether it will make sense to do oral immunotherapy or not."
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Like many who study food allergies, Keet was enticed by their mystery. Animal models are poor. The intensity of allergic reactions varies unpredictably, even in the same person over time. Why one child outgrows an allergy and another doesn't is unknown.
"This was something we didn't cover much in medical school" in the 1990s, says Matthew Greenhawt, a pediatric allergist-immunologist at Children's Hospital Colorado in Denver. Greenhawt's career trajectory tracks with a surge in food allergies, and these days, he can barely keep up with the stream of affected children who visit his hospital. Today, between 1% and 2% of people in the United States, the United Kingdom, and several other countries are allergic to peanuts—a rate that has roughly tripled since the mid-1990s. Other food allergies, such as those to tree nuts, are also on the rise. What's causing the increase is not well understood.
Despite rising caseloads, deaths from food allergies remain rare. Precise numbers are hard to come by, and estimates range from fewer than 10 to more than 150 a year in the United States. But even though an affected child is more likely to be struck by lightning than to die of a food allergy, the risk can feel ever-present. Parents never know when their children will happen upon culprit foods and how they'll be affected if they do. "We live in a complex world—people move food all over the place," says David Bunning, a businessman whose two sons, now adults, have multiple food allergies. "The impact on children in terms of their confidence to explore their environment can be extreme." Bunning's family almost never traveled or ate out. At their grandparents' house, the boys were usually confined to one room where food wasn't allowed.
Bunning now chairs the board of directors at Food Allergy Research & Education (FARE), an advocacy group in McLean, Virginia. Families like his, and the doctors who cared for their children, began to agitate for new treatments about a decade ago. Immunotherapy was the obvious candidate: Injections that desensitize the immune system to pollen, grass, pet dander, and bee venom have been around for decades.
Whether for an allergy to cats or pistachios, immunotherapy aims to disrupt the cells that swing out of control when faced with an allergen. When a child who is allergic to a food eats it, food proteins cross from the digestive tract into the bloodstream. An antibody called immunoglobulin E (IgE), which is bound to white blood cells called mast cells in tissues, recognizes the culprits. IgE activates the mast cells, which release histamine and other chemicals. In the skin, that response can lead to hives; in the respiratory tract, wheezing; and in the gut, vomiting. The most serious symptoms, such as a swollen throat or a reaction throughout the body, mark anaphylaxis, which is what families fear the most. Allergy shots blunt production of IgE, in part, researchers believe, by boosting levels of certain T cells that prompt a cascade of immune changes.
Brief testing decades ago indicated that shots for food allergies weren't safe. So around the mid-2000s, scientists began to feed children the allergen instead. One watershed moment came in 2005, when the National Institutes of Health formed a consortium for food allergy clinical trials. A second was in 2011, when advocates sponsored a symposium at Harvard Medical School in Boston to standardize goals and strategy for the pioneering immunotherapy efforts. About 60 people attended. "The patients were very clear," says Carla McGuire Davis, a pediatric allergist-immunologist at Texas Children's Hospital in Houston. They didn't care about eating a peanut butter sandwich; they wanted protection if they accidentally encountered one. Trialists set their end dose at a couple of peanuts and pressed ahead.
The results of early clinical trials were promising, says Hugh Sampson, a pediatric allergist-immunologist at the Icahn School of Medicine at Mount Sinai in New York City, who has studied immunotherapy in food allergies for many years. After 6 to 12 months of treatment, he says, about 70% to 80% of patients could handle higher doses of the food than before. Lab data were encouraging, too: Ingesting allergens over time seems to make mast cells less reactive, inhibiting their release of harmful chemicals. The therapy also produces other immunoglobulins: IgG4, which further inhibits mast cell activity, and IgA, which helps keep food allergens from escaping the gut.
The 2011 conference inspired the founding of the company now called Aimmune, fueled by more than $3.5 million from FARE. A second company, DBV Technologies, based in Montrouge, France, and New York City, expanded a few years later. Aimmune began to develop an oral product, essentially a capsule of powder derived from peanut flour with proteins held to consistent levels. In February, the company announced in a press release the results of a phase III trial involving 496 children and teenagers, with a regimen stepping up every 2 weeks through 11 dose levels. Among the 372 people in the treatment group, about 20% dropped out for various reasons, including side effects. After about a year, 96% of people who completed treatment could consume one peanut with no more than mild symptoms, 84% could tolerate two, and 63% could tolerate at least three.
DBV's skin patch represents a more conservative strategy: It delivers tiny amounts of peanut protein, the equivalent of one peanut over 3 years. Last year, DBV announced that in its phase III trial of almost 400 patients, after a year, those using the patch could, on average, eat three peanuts over the course of several hours before experiencing clinical symptoms such as vomiting or hives; before the trial, the average was just under one peanut. Outcomes varied substantially from person to person.
If one or both products are approved by FDA in the coming months, expectations are high that they'll be welcomed: Aimmune is now worth about $1.5 billion on the U.S. stock exchange. In 2016, FARE sold its share in Aimmune for $47 million.
“What people don’t understand is this level of protection fluctuates. … It is not guaranteed, nor is it constant.”
— Mimi Tang, Murdoch Children’s Research Institute
Meanwhile, some doctors embrace another route: offering peanut immunotherapy in their practices. "I can treat 20 patients with $5.95 of peanut flour," says Richard L. Wasserman, a pediatric allergist-immunologist in Dallas, Texas.
Wasserman ventured into food allergy immunotherapy 11 years ago. He developed a protocol based partly on published case reports and protocols for allergy shots, and he put IVs into his first five peanut allergy patients in case he had only seconds to rescue them from severe anaphylaxis. "When they all sailed through the first day, we stopped doing IVs," he says. "But that's a measure of how concerned I was."
Wasserman has since treated more than 300 children with peanut allergies and more than 400 with other food allergies. Other practitioners are joining in, among them the Cincinnati allergist whom the Kingsley family sought out: Justin Greiwe at Bernstein Allergy Group. Greiwe joined the practice in 2014, straight out of medical training. "It was a little nerve-wracking at the beginning," he says, because no officially sanctioned oral immunotherapy protocol existed. He took precautionary measures, such as lung testing before every treatment, to help ensure patient safety.
Some clinicians—and executives at the companies developing products—aren't happy about the doctor's office treatments. "That gives a lot of us pause," says Sampson, who in addition to his academic post is chief scientific officer of DBV. "We're very afraid that if this goes on enough, somebody is going to have an accident or a fatal reaction, and that's really going to change the FDA's viewpoint" about the products in development, he says.
Wasserman agrees about the need for caution. "Not every practicing allergist should be doing oral immunotherapy," he says. Greiwe suggests the treatment requires a dedicated staff, and he gives every immunotherapy family his cellphone number.
Jacob was one of Greiwe's first immunotherapy patients. His mother remembers Jacob's ears burning—a minor reaction that subsided on its own. "Or he said he hated peanuts and wanted to quit," she says. Worst was about 6 months in, when Kingsley discovered that for 2 weeks, Jacob had hidden his dose to avoid eating it. That was "the only time we ever felt danger," she says. Stopping treatment can quickly alter the immune system, says Cecilia Berin, an immunologist at Mount Sinai, because immunotherapy requires constant exposure. When Jacob squirreled away his daily dose, the changes induced in his immune system almost certainly started to fade out, putting him at risk. Greiwe restarted him on a lower dose and, his mother says, "We got through it."
Food allergies are becoming more common, and a handful of foods accounts for the vast majority of allergies. But small doses of the foods can blunt allergic reactions.
Even children who faithfully follow instructions face risks. The immune system can react to even subtle pressures, and the list of what can provoke a reaction to treatment is long. Exercising within a couple of hours of the dose can do it; so can a cold, a stomach virus, menstruation, or a hot shower. An asthma attack can trigger a reaction—many children with allergies have asthma as well—and so can stress. "We had a patient who had just played the violin on a stage, came down, and about 15 minutes later … took the dose and had a reaction," Davis says.
Berin posits that external pressures such as physical activity or illness make the gut more permeable, pushing more of the immunotherapy dose into the bloodstream. But that remains hypothesis. Regardless, it's becoming clear that "there are people who react years down the road to a maintenance dose," Keet says. For Jacob, such a moment came 9 months in. One evening while watching a movie, he downed his peanut M&M's and later ran outside with his cousins to dance in a rainstorm. He broke out in hives head to toe. Kingsley dialed Greiwe's number, and Jacob got a double dose of an allergy medication.
The most tragic data point to date is the case in Japan. A child had enrolled in a trial of immunotherapy for milk allergies at the Kanagawa Children's Medical Center in Yokohama. He'd raised what he could ingest from less than 8 milliliters to 135 milliliters—about half a glass of milk. After 3 months on that maintenance dose, he swallowed it and soon complained of pain. Within minutes, he had stopped breathing. His heartbeat was later restored in the emergency room, but he'd gone too long without it and sustained severe brain damage, according to a statement from the hospital's president, Sumimasa Yamashita, in November 2017. Kanagawa Children's Medical Center declined to comment, saying only that the incident remains under investigation.
In its statement, the hospital noted the boy had suffered an asthma attack the day before the catastrophic dose. He also was on a protocol that aimed to rapidly escalate the volume of milk he could drink over less than 3 weeks. But why the child reacted so disastrously to that glass of milk is unknown.
"What people don't understand is this level of protection fluctuates," says Mimi Tang, a pediatric allergist-immunologist at Murdoch Children's Research Institute in Melbourne, Australia. "It is not guaranteed, nor is it constant."
One of the few long-term analyses was published in 2013 in The Journal of Allergy and Clinical Immunology. Keet, pediatric allergist-immunologist Robert Wood at Johns Hopkins Medicine, and their colleagues sought out 32 children who'd been in a milk immunotherapy trial. Three to 5 years later, "The results were surprising in a sobering kind of way," Wood says. Only about a quarter "were doing great … tolerating unlimited quantities of milk without side effects." Another quarter had abandoned the protocol and returned to strict avoidance. The rest were eating dairy products inconsistently, with intermittent or even frequent allergic reactions. "It's hard to know which comes first, whether they got complacent" about ingesting it "or backed off because [they were] having too many symptoms," Wood says.
“It made me nervous, really nervous, to put something in my daughter’s mouth that she was allergic to.”
— Divya Balachandar, mother of Leena Wong
More and more families are willing to live with those uncertainties because the alternative is greater anxiety. "We were scared senseless," says Divya Balachandar, whose daughter Leena Wong, now 7 years old, had her first episode of anaphylaxis at age 4 after being touched by a cashew. Testing revealed Leena also was allergic to sesame, eggs, milk, other tree nuts, and peanuts. Balachandar, a pediatric pulmonologist in New York City, and her husband enrolled Leena in a federally funded oral immunotherapy trial for peanut allergy in 2015. "It made me nervous, really nervous, to put something in my daughter's mouth that she was allergic to," Balachandar says. She gravitated toward a trial over treatment with a local allergist because, she says, "there were no rules" about how to treat in private practice. By this spring, Leena could eat two spoonfuls of peanut butter—about 25 peanuts—without a problem. She started second grade sitting with her classmates at lunchtime, liberated from a separate nut-free table.
Both companies developing peanut-based treatments say they had more volunteers for their trials than they could accommodate. Private practitioners usually have a waiting list; Greiwe's runs more than 4 months. At Stanford University in Palo Alto, California, which has a large food allergy research program, more than 2000 patients are waitlisted to enroll in the university's clinical trials, says Sharon Chinthrajah, an allergist-immunologist there.
More treatments are on the horizon. In Australia, Tang is working with a company that's testing an approach she pioneered, a combination of a probiotic and oral peanut immunotherapy. The probiotic should tilt the body toward producing the subset of T cells that tolerate the allergen and away from making cells that attack it, she says. Chinthrajah and others are enthusiastic about combining oral immunotherapy with a monoclonal antibody called omalizumab, which is FDA approved to treat allergic asthma. Clinical trials are also gearing up to test other monoclonal antibodies that target molecules involved in allergic inflammation.
Jacob's and Leena's families are eager to see what comes next. Jacob is also allergic to pistachios and cashews, but because he finds those foods easier to avoid than peanuts, the family has rejected immunotherapy that targets them. Leena's family is the opposite. With her older sister and her parents, Leena attends Indian functions regularly, where tree nuts are a common ingredient in sauces. In August, another episode of anaphylaxis landed her in the emergency room: She began to vomit and suffered chest tightness and eye swelling after eating Indian food her parents suspect contained cashews—despite having triple-checked with the restaurant that it did not. "I would love to do tree nuts," Balachandar says, once immunotherapy "becomes more available and better understood."
Physicians with deep roots in food allergy immunotherapy hope those new to it tread carefully. Doctors who offer such treatments "have to know the data cold," including published results and side effects that may crop up, Greenhawt says. Still, he's thrilled that peanut immunotherapy treatments may soon be approved. The other day, talking with a peanut-allergic 4-year-old and his mother, Greenhawt shared what the next year might bring. "I said, ‘I'm going to see you a year from now; hopefully, we will have two products that are approved, and we can talk about which one might be best for you.’" The mother looked startled and delighted, Greenhawt says. "I've never seen somebody smile as brightly as that."
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