I’ve received many questions about what the kids’ IGE numbers have been since they began oral immunotherapy. I was definitely curious when I was researching OIT and I like to see numbers too, so I’ve posted them below. Basically, the numbers trend downwards since OIT. Unfortunately, the numbers were already down from their peak before they began OIT (2019), so I won’t ever know if the continued downward trend is due to OIT or if they were on their way to becoming less allergic anyway. Below I list the raw data, and then graphed. I don’t have 2022 numbers, so check back after this summer for those.
I discovered that it was unbelievably difficult to properly dispose of expired and/or used Epipens, injectors, and medications. Here’s a summary of the first 50 Internet search results: “Take expired EpiPens to a doctor’s office, hospital, or pharmacy for disposal.”
NOT!!! Our local Walgreens wouldn’t take them. Our doctor’s office wouldn’t take them. Our local police station would only take old medications. Even our allergist’s office said no. I carried around a bag of our expired Epipens for a couple of years, trying to get these “drop-off locations” to take them. Our collection of expired Epipens and injectors was growing into a very large pile.
photo credit: Med-Project
How to Dispose of Expired or Used EpiPens
I eventually found a couple, more reliable resources:
#1 Med-Project, an organization that provides you with the packaging and an address to mail your disposal. Better than schlepping your expired EpiPens, back and forth across town. Depending on your location, they also provide a local list of mail back or drop off kiosks for other products like expired medications and inhalers.
Enter your zipcode on their site to see what your area’s options are:
Traditional Chinese medicine (TCM) has been a part of my American upbringing because my parents grew up under TCM principles and philosophies. Our family healthcare approach has evolved to be a mix of both Western and Chinese medicine along with some skepticism for each of them (see “5 Reasons Not to Rely on Doctors“). However, through generations of family trial and error, we’ve come to find a few Chinese herbal remedies that are popular, commonplace, and often more effective than Western options. Here are the top Chinese herbal remedies that sit in our medicine cabinet:
Best Chinese Medicine for Strains, Sprains, Bruising, and Soft Tissue Trauma: Yunnan Baiyao
Yunnan Baiyao in powder form, photo credit: tiensproduct.com
Yunnan Baiyao is an ancient Chinese remedy for severe bleeding, trauma, bruises, sprains, strains, and pain and a whole lot more. A lot of Chinese herbal medicine is slow-acting, so it’s not easy to tell if and when they start to help. This is definitely not that kind of medicine – Yunnan Baiyao effects are almost immediate. It’s available in powder, capsule, and patch form. As I understand it, it keeps blood circulating (and not stagnating) through the applied area and also provides some pain relief. We’ve used this regularly for severe bruises, sprains, and fractures, but have not tried it for post-surgery recovery. With it, we’ve had significant swelling and sprains disappear in 1-2 days. We’ve also used the patch version for chronic, recurring pain – with about 80% success rate. There’s an interesting story behind this medicine that you can read about here. We would reach for this before any ice pack and are now using an integrative approach to speed up healing.
Best Chinese Medicine for Allergies and Sinus Infections: Bi Yan Pian
Plum Flower brand, Bi Yan Pian
I came across this Chinese formula for allergies called Bi Yan Pian, when I was browsing this book, Between Heaven and Earth: A Guide to Chinese Medicine. It’s similar to this pediatric liquid extract herbal formula called Windbreaker which I had originally been giving my child. However, this has worked way, way better and faster. It seems to work even better than Zyrtec for both me and my child. The dosing instructions for the Plum Flower brand are 4 pills, 3x a day. However, I only need 4 pills once a day and my 8 year old takes 2 pills once a day whenever we experience symptoms. During our last allergy season, we would take them only after we started having hay fever symptoms, and the pills seemed to halt the symptoms within the hour. Zyrtec often doesn’t work for us after our symptoms have already started.
Best Chinese Medicine for UTIs: Ba Zheng Tang
Ba Zheng Tang, liquid formula
Ba Zheng (Eight Rectification) San or Tang seems to be the most effective remedy (in both Western and Eastern spheres) for UTIs in our experience. I wish I had known about Ba Zheng (Eight Rectification) from the beginning when my mom first started having UTIs. The UTIs became chronic after regular antibiotic use. After years of trying tons of Western remedies (D-Mannose, premarin, antibiotics, garlic pills, oregano, cranberry, you name it), I saw this formula mentioned quite a lot in my research on Chinese medicine for UTIs. It seems to be a formula that specifically targets urinary symptoms and is used for acute UTIs. After 10 years of recurring UTIs every 4-6 months, my mother stopped her last two UTIs with this formula and hasn’t needed antibiotics in 2 years! It almost seems too good to be true. I’m guessing that overcoming the last two infections without antibiotics helped to stop the cycle of antibiotics to recurrent UTI. Berkeley Community Acupuncture has helpful information on how long and how often it could be taken. It’s not meant to be taken long term. If you can’t stand pills, I also found Ba Zheng in liquid formula.
Best Chinese Medicine for All Things Female: Dang Gui
Sliced dang gui root, photo credit: tcmwiki.com
Also known as Chinese Angelica Root, dong quai, or Angelicae Sinensis Radix. This is popular as the go-to herb for any female issues. It’s apparently beneficial for men’s health as well. We’ve used it for improving regularity of menses and reducing the side effects of hormonal imbalance that women naturally go through. Don’t take during menses (only in-between periods).
Anecdotally, a friend of ours tested extremely anemic to the point that she was recommended to go through iron IV infusion. Before doing the IV, she decided to take iron pills (known to have poor absorption by the body) and dang gui for a few months first to see if she could get the numbers up without IV infusion (which can have some side effects). When she retested, she was no longer anemic and the hematologist said she could hardly believe the results as iron numbers don’t typically go up that fast through oral intake of iron pills. This is a strong- acting herb. It comes in pill form, but we have only ever used the dried root form brewed in soup. Here’s the basic recipe we use: Simple Dang Gui Soup or Tea Recipe.
Best Chinese Medicine for Immune System and Energy: Ginseng
There’s American or Asian ginseng. We’ve only tried the Asian ginseng. I see it suggested for use in a variety of ailments, but in our family we take it for primarily overall vitality, energy, and immune system strength. In our family sample size, we’ve linked it to improved asthma and allergy reactions and general sense of well-being in both the kids and adults. Depending on your body’s constitution, some may find it too strong, akin to taking a dose of caffeine. As with dang gui, it is one of the stronger herbs and and it’s important to check the contraindications for it, as it really depends on your body type and needs. Definitely read the literature on it before taking, to see if it’s a good fit for your body’s needs. This also comes in natural dried root form, and in pill and extract forms.
Best Chinese Medicine for Eye Health and Clearing Inflammation: Chrysanthemum
Dried white chrysanthemum flowers, photo credit: amazon.com
We take chrysanthemum flower in tea form, steeping the dried flower in hot water. To feel any benefits, you have to take it regularly for long periods of time. It’s indicated for clearing heat and inflammation in the body. There’s white or yellow chrysanthemum and they have different indications. White is mostly taken for eye health (dry eye, etc.) and visual acuity. Yellow for common cold-related symptoms. The most obvious benefit we’ve ever had from it was relief from dry eye and allergy-caused eye irritation. Here’s the basic recipe we use: Chrysanthemum and Goji Berries Tea Recipe for the Eyes
Best Chinese Medicine for Mouth Sores: Watermelon Frost
Watermelon frost, photos credit: suanie.net
Watermelon frost is available in spray or powder form and is indicated for canker sores and sore throats. We’ve only used it topically for sores in the mouth and it seems to reliably heal the sore quickly. I see many TCM/naturopathic practitioners recommending it for sore throats, so I may try that someday.
We have food allergies and we need to carry around EpiPens. But we also have a high-deductible HSA-eligible health insurance that doesn’t cover very much, so below is a rundown of the options I went through to find the best price for EpiPens. My takeaway is that if you can’t get an EpiPen or EpiPen alternative for free, you should only pay up to the low $100s in the U.S. See the rundown of options below.
(This fall of 2022, I had to fill our EpiPen RX at Walgreens for $109 with a GoodRX coupon. The GoodRX price is only if you don’t use insurance. In prior years, I bought Auvi-Q which was available at $25 for those with poor insurance coverage, but that Auvi-Q price went up to $125 in October 2022. All of this is ridiculous, isn’t it?)
In case you’re curious, an EpiPen size comparison: (L to R) Auvi-Q, Adrenaclick, Mylan/generic EpiPen
#1 Health Insurance EpiPen Cost
When we had excellent health insurance, I was able to buy a pack of two generic EpiPens for as little as $30. I’ve also seen online that some people have health insurance that can bring the cost down to $0-$5.
On the Mylan brand name EpiPen website, you can get a savings card for up to $300 on brand name Epipen, and a savings card of $25 on generic EpiPens. However, you’re only eligible for these savings cards if you also have commercial health insurance:
“The Epipen Savings Card® helps eligible patients who have commercial health insurance save on out-of-pocket costs.”
– Mylan website
And in fine, fine print, Massachusetts or California residents are not eligible. At any rate, if I were eligible for the savings card of $25, my generic EpiPens would now cost $451 instead of $476. The search continues. . .
(FYI, the brand name Mylan EpiPen and the generic EpiPen look and work exactly the same. The EpiPen alternatives operate a little differently.)
#3 EpiPen Alternatives
There are a few other EpiPen alternatives. You would need to get your doctor to write you an RX specifically for one of these alternatives.
Adrenaclick – about 6 years ago, this was the wonderboy of EpiPen alternatives because CVS offered them for as little as $10 (I don’t remember the fine print of this offer). However, without insurance, it’s now offered at a retail price of ~$110 at Target/CVS pharmacies. You can also print out a $10 savings card that should bring you to ~$100.
Auvi-Q – our allergist suggested trying Auvi-Q. This is the EpiPen alternative that talks you through the process. It has a retail price of $4500 that nobody actually pays. I called the Auvi-Q customer service number and learned that they have contracted with a direct delivery pharmacy called ASPN Pharmacies. To start the process for direct delivery service, call them or complete this direct delivery enrollment form. The pharmacy itself has mixed reviews. (My personal experience was that it took me about 2.5 weeks and two followup phone calls to get the EpiPens.) However, the ASPN representative told me the following:
If you have commercial health insurance AND YOUR INSURANCE COVERS the Auvi-Q, then the cost will be $0, even if you have a high insurance deductible.
If you have commercial health insurance AND YOUR INSURANCE DOES NOT COVER the Auvi-Q, then the cost will be $125. (In October 2022, this cost increased from $25 in prior years to $125 this fall!)
If you need more than one pack of 2, you can order a second one for the same price after a 30 day waiting period.
For those without insurance, they offer a patient assistance option if you complete this patient assistance form. If you don’t qualify for financial assistance, they say that the most anyone should have to pay for Auvi-Q is capped at $360. At that price, you would be better off with a Adrenaclick or the generic EpiPen options through GoodRx and the like (see #4 below).
Symjepi – I’m not familiar at all with this option, but I saw it listed on the GoodRX website as an Epipen alternative. Pricewise, I didn’t see any quotes that made it a better deal than the Adrenaclick or Auvi-q. I’m not sure there is any point to considering this option seriously.
#4 Prescription Cost Saving Websites for EpiPen
There are a lot of prescription cost saving websites out there now that can offer prices in the low $100s. To get these discounts, you search the name of the drug and the website returns an out of pocket cost comparison of the Rx’s cost at local pharmacies, along with a coupon that you can use at the pharmacy. These are the costs of the EpiPen if you pay without using insurance.
Here are a few of the sites I looked at. The costs below are based on my local zip code, so may be different for you. This is what I found for 1 pack of 2 generic epinephrine auto-injectors:
#5 Your Allergic Friend with Good Health Insurance
It also crossed my mind to ask if any of my allergic buddies with good health insurance wouldn’t mind just calling in a refill for me to pick up. I figure that would be about $30 and without the kids in school, I really don’t need an RX in their names. Just throwing this idea out there. . .
#6 Expired Epipens
You either already have expired Epipens or you have friends that do. I think I’ve never felt that comfortable with expired Epipens, knowing that I carry them around in all sort of temperatures that could lead to its degradation in performance. However, if they’ve been stored safely, they could very well be perfectly useful, so you may keep that in consideration in terms of how many new Epipens you may want to buy. A study in 2019 showed that even Epipens that were 30 months past their expiration date were still effective. (See here if you’re trying to figure out how to dispose of them.)
It may be too late for my children in some respect, but it seems there are more things that we now know about how food allergies develop that would have COMPLETELY changed the way we approached our kids’ diets at birth. If you’re concerned about your baby or child possibly developing allergies, below are some things you should absolutely consider. Actually, there are an increasing number of individuals who are developing allergies as adults, so it’s worth taking a read below even if you’re no spring chicken.
Food Allergy Epidemic
First, some statistics that I came across recently – according to Dr. Kari Nadeau, who is well-known in the food allergy treatment world:
1 in 12 children in the US, Europe, China, Korea, and Japan have food allergies
1 in 10 children in Australia
1 in 10 adults had food allergies according to a recent survey of 40,000 adults. 50% weren’t aware of the allergies until they were adults.
I don’t have food allergies yet, but I’ve developed some environmental allergies as an adult. . . are food allergies on the way? Below are three food allergy prevention strategies that every one should know.
Food Allergy Prevention Strategy #1: Avoid Antibiotics and Heartburn Medications
This visual illustrates the theory of how modern life may be altering our body’s natural defenses
Avoid antibiotics and heartburn medications if at all possible – they cause changes to your gut flora, which in turn, affects the way your body responds to food.For all ages, studies have come out showing a link between the increased likelihood of food allergy and the use of antibiotics or heartburn medications. While the studies have shown correlation and not necessarily causation, it’s suspect enough to reconsider your next antibiotic or heartburn medication RX. If there are alternatives, why risk it? Until recently, I didn’t realize that there are a lot of things to try before resorting to antibiotics or heartburn medications, so do your research on alternatives. Your doctor may or may not be aware of this information, let alone warn you of the possible issues when prescribing these medications. For further understanding:
These writings discuss the impact of antibiotics and heartburn medications on babies and children:
Food Allergy Prevention Strategy #2: Introduce Potential Food Allergens Early – Don’t Avoid Them
Neither my husband nor I have any food allergies – just hay fever, so I didn’t consider that my kids were at high risk for food allergies. Yet both kids ended up with nut allergies (and underwent oral immunotherapy). We followed the accepted approach at the time of avoiding nut introduction until age 1.
Studies over the last few years have reversed that recommendation and pediatricians now recommend introducing potential food allergens as early as possible. This is a pretty time-sensitive, age-sensitive recommendation, so don’t miss this window if you want to try it. These two articles from verywellhealth.com give a good introduction on the change in recommendations as well as guidelines for how to do this early introduction to food allergens as safely as possible during COVID-19 (when you may be tempted to hold off). They write specifically about peanut, but it’s the same idea for all food allergens:
Alas, it’s also clear that there is still confusion and the guidance you receive will depend on your pediatrician. This study by Contemporary Pediatrics found that pediatricians today are still not necessarily recommending the current guidelines. Regardless of what your doctors say, do your own research too, especially given the inconsistencies across medical professionals, and come to your own conclusion about what you want to do. If you do introduce potential allergens early, do it with the support of a doctor because the risk levels vary by family.
Food Allergy Prevention Strategy #3: Control Eczema
For babies and children (and who knows, perhaps adults, too?), it appears particularly important to try and control eczema as best that you can to avoid the risk of further allergy development. This includes finding and avoiding the triggers for eczema as well as treating it topically.
Are you trying to bolster your eye health? In our family, we are definitely doing what we can to strengthen the eyes. At any given time, members of our family will have red and/or itchy eyes, dry eye, or blurry / myopic vision. While we use artificial tears and allergy eye drops, we also do what we can to help address the root cause.
Which kind of chrysanthemum (菊花) is best for eyes?
When I first looked up chrysanthemum tea recipes, I found many refer to chrysanthemum generally without specification. In fact, there are (at least) two main kinds of chrysanthemum, white (白菊花, bai ju hua) or yellow (黄菊花, huang ju hua). In the realm of eye health, yellow is much more popular and is indicated for dry, tired eyes. White is suggested more often for visual acuity. There was some conflicting info online (I’ve listed the main sources that I consulted below in ‘Resources.’) So I’ve settled on buying and drinking some of both. The white version is definitely more bitter and tastes more like medicine.
You can buy chrysanthemum at your local Asian grocery, Chinese herbs store, or online. I’ve been buying an organic version from Starwest Botanicals that is sometimes available on Amazon as well as directly from their website.
White chrysanthemum from Starwest Botanicals
Which kind of goji (枸杞子) is best?
As with chrysanthemum, I didn’t realize there were different kinds. There are at least two different kinds of goji berries (also known as wolfberry, gou qi zi, 枸杞子). Until recently when someone gifted us a box of black goji berries (the exact product that I’ve linked to here), I had only heard of the red goji berries. But apparently, the black goji berries are even more powerful and have more antioxidants than red goji berries. You can supposedly chew the dried black goji as a snack (the red ones are definitely snackable and have raisin consistency), but when I tried the black ones, they were very dry and tasteless. Maybe I have the wrong kind.
Red goji berries are sold at various grocery health food stores (Whole Foods and the like). They even sell them in bulk at our local Costco. Black goji berries are not so ubiquitous, but I found them at my local Chinese herbal store, online herbal stores, and even Amazon seems to have some selection these days.
In the end, I concluded that choosing the goji berry depends on your needs at the time. Both are generally good for you – the red goji berry is sweet and more neutral in nature, and the black goji berry may be more powerful, but less tasty. We have some of each, as I like to hedge my bets and balance things out.
Goji berries from Costco
If you don’t have access to the variety, don’t get hung up on it. Any chrysanthemum and any goji will likely have some benefit. As with a lot of Chinese medicine, long term, steady consumption is advised for more benefit. My children’s TCM doctor told us that we, including the children, could safely have chrysanthemum tea everyday and that it would be great for subduing allergic tendencies.
Basic Recipe
Ingredients (for 1 serving)
4-5 dried white or yellow chrysanthemum flowers (this quantity is more dependent on taste, the more flowers, the stronger the tea, and so on)
A handful of goji berries (again, the quantity is also more about taste. The more you add, the sweeter the tea). Use either black or red berries, or both!
Honey (optional)
Directions:
Boil water.
When water comes to a boil, turn off heat. Throw in flowers and berries. Let it steep for at least 5 minutes. (More time won’t hurt; it’ll just taste stronger). Variation: Simmer the flowers and berries for a few minutes before steeping.
Strain out the flowers and goji berries.
Add honey if desired and drink!
Resources
Different kinds of chrysanthemum, indications for white vs. yellow:
From left, Vitamin C, a bottle of liquid extract of Chinese medicine, Phytocort
Maybe Zyrtec doesn’t work for you lately or perhaps you don’t like its side effects. Personally, I fear that we don’t know much about the long-term use of these “safe” OTC antihistamines for allergy relief. Instead, I’m hoping to treat my sneezing family as naturally as possible. Below are some of the things that I’ve been reading about (and in some cases, trying out):
1. Avoid Antibiotics as Much as Possible
Scientists are increasingly looking at an imbalance in the microbiome as the root cause of many of the problems we have with our immune systems not working properly. These problems include both food and environmental allergies, asthma, and dermatitis.
It’s not too far of a stretch to see the problem with taking antibiotics, since antibiotics essentially kill all the bacteria you have, both the good and the bad.
I really wish I knew this before, both for myself and the rest of my family. Apparently, some of the good bacteria don’t come back. Antibiotic overuse has also been linked to people suddenly developing serious allergies later in life. It should also be noted that antibiotics can be found in our food and water supplies, so even if you’ve managed to avoid antibiotics for infections, you’ll probably still have some low level of exposure to it. (This topic deserves it’s own blog post.) But basically, avoid antibiotics as much as you’re able!
2. Try Traditional Chinese Medicine to Address the Root Cause
Perhaps strengthening your body in other ways can still help to address your immune system gone awry. I don’t want to be lugging an air purifier around for the rest of my life! Traditional Chinese Medicine (TCM) practitioners often claim that acupuncture and herbal medicine can alleviate symptoms as well as address the root cause of hay fever.
For children, I’ve been looking for ways to address what seems to be cough-variant asthma in one of my kids. A TCM practitioner recommended a combination of liquid extract formulas from “Gentle Warriors”, a line of children’s herbal formulas. The formulas were selected based on my child’s constitution and the presenting symptoms. I’m skeptical, but also hopeful. We’re trying it out for 1-2 months and I’ll be sure to update this post with our results.
Update as of 1/6/2021: After we tried these formulas last year, my child’s cough-variant asthma seems to have disappeared! After having this asthma cough for over 1 year, it’s now been gone for 5 months! We’ve managed to keep off of Qvar and Singulair, oral steroids that had bad side effects for us.
3. Eat a Diet Rich in Natural Antihistamines
If you’re in the midst of having allergic symptoms, this approach isn’t going to help you right away. However, over a couple weeks, it sounds like a person with mild allergies could benefit. Common foods with natural antihistamines include: bell peppers, citrus fruits, pineapples, broccoli, cauliflower, berries, apples, tomatoes, black/green tea, ginger.
My family has pretty good eating habits and many foods on this list are already a regular part of the diet. Yet we still have allergic symptoms so I’ll have to say this doesn’t get rid of all your allergies, although I guess they could always be worse. Anecdotally, as a data point, I’ve noticed that my two kids who rate equally on the allergy scale, have different levels of allergic symptoms. The one who happens to eat a lot more fruits (2-3x more than the normal serving that everyone else eats), also happens to experience less allergic symptoms. Then I read this study about how a Mediterranean diet rich in fruit and vegetables was found to be associated with less allergy symptoms, which further boosted my small finding.
4. Take Natural Supplements to Boost the Immune System
The amount of natural antihistamines found in foods may not be enough for some allergies. Higher dosages in capsule or powder form enable higher intake to replicate the dosages given in scientific studies. These supplements include:
Vitamin C – I found Vitamin C at the top of many lists. Apparently, vitamin C both inhibits the release of histamine from anti-inflammatory cells as well as helps to break down histamine after it has been released. However, the current recommended daily allowances (RDAs) for children (25mg-45mg) and adults (65mg-90mg) may be too low to create the expected allergic relief. The current RDAs were in fact calculated as the amount needed to prevent scurvy and not other ailments. According to the ODS, the highest daily intake likely to pose no risks is:
400 mg for infants aged 1–3 years
650 mg for children aged 4–8 years
1,200 mg for children aged 9–13 years
1,800 mg for teenagers aged 14–18 years
1,800 mg in pregnant or breastfeeding teenagers aged 14–18 years
2000 mg for adults
For my kids, I decided to trial 400-500mg dose. We are only 1 week into it, so I will have to update this post when I have more observations.
Quercetin – this is an antioxidant also regularly included in everyone’s list. It’s high in leafy greens, apples, grapes, and onions to name a few. I saw a range of dosage recommendations for taking it as a supplement. For adults, I saw a range from 500mg daily to 1000mg 2x/day. For children, Dr. Weil says 200mg daily 2x/day for hay fever.
N-acetyl-cysteine (NAC) – this is an antioxidant that some websites report is stronger than Vitamin C. It’s touted as being able to break down mucous, and reduce allergy symptoms. While it can be found naturally in protein-rich foods that you might eat, like turkey, eggs, etc., a much higher dose is needed for therapeutic effect. I read that NAC caused stomach pain in high doses for some users, so I would proceed with caution. I saw recommended dosages of 300mg 2-3x daily.
Probiotics – Probiotics are the supplements that contain the good bacteria that your gut needs for a healthy immune response. Whether probiotics are effective in putting the good bacteria in your gut is still being studied. However, this doesn’t stop a lot of people from trying. There have been quite a few studies that suggest taking probiotics may result in less hay fever symptoms.
What has worked for you? If there is something that has really worked for you, I would love to know about it!
I try to avoid the use of allergy medications as much as possible, so I’ve tested out a variety of non-medical ways to reduce my family’s environmental allergic reactions to tree pollens, grass pollens, and dust mites. Here are the things that we do that seem to have helped in order of suspected effectiveness.
1) Run the air purifier
We have serious dust mite allergies, so I run an air purifier on high in my children’s carpeted bedroom about 1 hour before their bedtime, then I switch it to low for the remainder of the night. We’ve been told to run it 24/7, but that seems excessive. Apparently, it takes approximately 1 hour for the air in the bedroom to be completely filtered. I also run it about 1 hour after I vacuum. Our vacuum doesn’t have a HEPA filter, and I’ve also read that even if it does have a HEPA filter, the sheer act of vacuuming kicks up enough dust (mites) that then need to be filtered. There seem to be a lot of fancy, pretty models on the market these days. We have a pretty old Honeywell one that looks like this model. It seems to do the job, so my thought is, you may not necessarily need a fancy medical grade one.
2) Avoid being outside between 5am to 10am
I only recently learned about this, but according to multiple online sources, pollen counts are highest between 5am-10am and after sunset. Close your windows before dark! I realized how true it was when one of my kids started having a runny nose every time we tried to do a 7am walk during shelter-in-place, but had zero issues when out in the afternoon. So much for trying to become an early morning exercise person. On the other hand, now I feel a lot better about sleeping in.
3) Wear a face mask
I’ve got a lot of face masks around the house these days.
If you do have to be outside in the early morning, then try a face mask. This made a HUGE difference for my massive grass allergy when I was outdoors recently – it wasn’t even a PM 2.5 or N95 mask. Just a simple, single layer fabric mask seemed to do the trick. Fortunately, it’s become normal to wear masks these days, so my grass allergy symptoms have significantly improved. I also suspect I have a temperature sensitivity allergy that is sensitive to the change from the warmth of my bed and being suddenly cooler. I swear it’s real, and putting on a mask immediately after getting out of bed seemed to help!
4) Vacuum regularly
By this, I mean once every 1-2 weeks. That may seem like a lot or very little to you. To me, it feels like a lot and so we have an iRobot that we set loose in the bedroom. It really helps, especially with getting under the bed and not making it seem like such a chore. Again, we have a very old model (older than this, so it’s not a true HEPA filter and doesn’t filter dust mites), but I still see a very full dust container at the end of each run. I run it twice for good measure. We run the air purifier to get rid of the resulting airborne dust mites (in theory).
5) Use a nasal spray / Neti Pot / eye wash
I keep a few canisters of regular saline spray by our home’s entrances. If it seems like a high allergen day, I have the kids do a thorough spray in each nostril and blow, when they’ve been outside. We’ve tried this Arm & Hammer brand and the Little Remedies brand with similar results. Arm & Hammer is available at our local Costco for a much better price. Ideally, I could teach them to use the Neti Pot, but it’s a little too involved.
My mom and kids seem to also have a strong reaction to allergens in the eyes and frequently have very red or itchy eyes after being outside. We have used allergy eye drops, but I don’t find them very effective. Instead, briefly washing the eyes out with a few artificial eye drops or eye wash seems to help clear or prevent the red. The sooner you do it after being outside, the better it works. We use these single use Refresh vials the most.
6) Use dust mite covers
These alone, didn’t seem enough to make an actual difference. My kids were still getting congested at night when we had these. I think the air purifier made the most difference. But now we have the dust mite covers for all their pillows, mattresses, and duvets, and I’m not about to remove them to test. All covers are not equal though, so I researched a bit and ended up using this website’s reviews to help with the selection and considerations.
7) Run pillows and comforters through the dryer on high heat
High heat is supposed to kill or at least reduce dust mites, so I run the kids’ pillows and comforters on high heat in the dryer for 20-30 minutes every month. Since I only do this about once a month, it’s hard for me to tell if this is a necessary step or if changing sheets along with the use of dust mite covers is enough.
Thoughts? More info? Better info? I’m all ears. Email me at: wishiknewbefore20@gmail.com or leave a comment below.
We have stopped oral immunotherapy updosing, after having reached a dose of 1 whole nut for each child (see why in the section below, “New information since we started OIT”). So now we are entering maintenance phase at a daily peanut for one child and a daily cashew for the other. Our allergist said that after about 3 months on the 1 nut dose, they would be protected from accidental ingestion of up to 2-3 times their dose – which would be about 2-3 nuts.
It’s the weight that matters, but seeing my nut-allergic kids eat an entire nut of these sizes was a little unnerving
Time involved
It took us 7 months, updosing on a schedule target of every 2 weeks, to go from roughly 2.5mg of nut flour to 1 of an actual, decent-sized nut. We had a few updoses with 2.5 to 3 weeks in between due to illness, scheduling availability, and travel.
We’re only 30 minutes away from our food allergist. Each appointment was 1.5 hours long. I got used to measuring out the nut flours everyday. All in all, in retrospect (now that it’s over!), the time invested didn’t seem so bad.
Reactions during updosing
Overall, we had a pretty smooth experience with updosing. We did not have any anaphylactic reactions. We followed most of the guidelines:
We usually dosed in the evenings around 7 to 7:30pm. Our kids go to bed around 9pm. We did occasionally dose late around 8pm.
We skipped dosing on particularly hectic/exciting days like Halloween.
We did shower after the dose a few times, but we kept it particularly short and not too hot and did not have reactions.
We dosed with Zyrtec on updose days and for 2-3 days after based on initial recommendations of our allergist.
Both my kids had occasional tummy aches, but I could never be certain if it was related to dosing. I suspect that some were and some weren’t.
Twice, one child had the feeling of something in the throat. Both resolved with Zyrtec.
My peanut-allergic child had coughing reactions on 5-6 occasions within the two hour window of dosing that were resolved with Zyrtec.
Our allergist basically recommended that we stop at 1 nut. This is a change in thinking since the time we began OIT last year. Originally, our provider thought that OIT would continue up to about 3-4 nuts. Here are the recent learnings that resulted in the change of their decision:
Clinically, our provider saw that patients in maintenance were having more reactions at 3-4 nuts versus patients who were doing very well on just 1 nut, while conferring a strong level of protection of up to 3 nuts. (Incidentally, for what it’s worth, I learned that a maintenance dose of 8-10 nuts is around the level of what is considered “free eating.”)
This supported my own anxiety-inducing findings on Facebook OIT groups where it seemed that many parents shared that their kids were having reactions, even anaphylactic ones on maintenance doses of 3-4 nuts or more.
Palforzia, the “drug” containing pre-measured doses of peanut flour will also only go up to 300mg (1 peanut), so this falls in line with what is now considered “safe” and FDA-approved.
I also came across this 2018 Palforzia aka AR101 study that showed only 67.2% of patients who had been on a maintenance dose of 300mg peanut flour were able to pass an exit challenge of 600mg without dose-limiting symptoms. This made me less comfortable about the 2-3 nut protection level mentioned by our allergist. If you’re data-inclined, here’s the appendix for even more details (including the OIT dose schedule, patient characteristics, etc.) on the study.
Next Steps
All in all, our provider suggested that we stop at one nut for now and reassess in 3 months whether we would like to continue, given the recent findings and after we see how our kids fare on their 1 nut maintenance. Our provider also said that we would need to be completely reaction-free for the next 3 months to even consider updosing to reach 3-4 nuts (which is about 3-4 more updose appointments).
Our peanut-allergic child with suspected underlying asthma conditions would not be recommended to continue past 1 nut due to the risk associated with the conditions, unless we resumed asthma control medications. We’ll have to think hard about that one because the behavioral changes were very unsettling.
Our other cashew/pistachio-allergic child could be allowed to continue if there are zero reactions in the next 3 months. However, in that case, we would do a pistachio challenge of some sort. When we began OIT, we were told that desensitizing to cashew results in desensitizing to pistachio (due to the cross-reactivity) in about 80% of the cases. Our allergist now says that this is actually the case in 90%+ of the allergies, and after 3 months on the 1 cashew maintenance dose, they would recommend a challenge of eating 3 pistachios in the clinic to see if my child has desensitized to the pistachio as well (1 cashew = 2.5 pistachios).
The pediatric allergists who we’ve seen have said that all the allergy medications being used to treat children’s allergies are “very safe these days.” However, I like to double-check everything, including what the doctors say. Plus, to me, there’s a range of “safe” which I like to call risk reduction. Here’s what I found: there are in fact, nuances to the common allergy medications that are prescribed like Zyrtec and Benadryl, that are worth considering when deciding which to use and when. (If you want to try and reduce allergies without medications, see my posts on physically reducing allergens in your environment and also natural ways to minimize or treat your allergies.)
Best anti-histamine for kids: Zyrtec
Zyrtec is the most popular anti-histamine for kids
For regular environmental allergies, Zyrtec seems to be the anti-histamine of choice. It’s the second fastest-acting (20 minutes – 1 hour) and lasts 24 hours. Benadryl apparently works the fastest, but its main ingredient has been linked to increasing risk of dementia. Many allergists no longer recommend Benadryl for kids at all. The Stanford clinical trials on OIT for peanut allergies used to require children to dose daily with Benadryl. When the studies came out about its link to dementia risk, they switched over to Zyrtec immediately.
Claritin takes longer to work (3 hours). Allegra, another popular choice, is shorter-acting and apparently less effective.
Anecdotally, on a Facebook group for children with allergies, some parents noted increased aggressive behavior and acting out during their child’s regular use of Zyrtec. They felt that symptoms resolved with the use of Allegra. I searched this briefly and found that allergy meds are sometimes linked to negative effect on behavior, although no one particular anti-histamine is blamed. It appears to depend on the child.
Our own pediatric allergist also recommended Zyrtec during our food allergy treatment, but did not have any particular reason for not recommending the others. If you’re looking for the quickest relief possible (and for one-off use) such as reaction to a food allergen, etc. then Benadryl might be your top choice. Also, according to our pediatric allergists, if you need the medication to get into your system faster, then choose liquid over tablet form. However, if your child needs the medication daily, then Zyrtec sounds like a safer choice.
Best nasal spray for kids: Flonase Children’s Sensimist
Flonase Sensimist is the most popular nasal spray for kids
Two of our pediatric allergists recommended Children’s Flonase Sensimist (different formulation from the adult version). One pediatric allergist called it “super safe.” It appears to have the least amount of systemic absorption – which is what you want since you are mainly trying to treat nasal symptoms and want the drug to work locally. We were also warned to be sure and spray away from the nasal septum as spraying directly can damage the septum and cause nosebleeds.
Even with Flonase, it seems that the less you need to use it, the better. Studies have found that inhaled corticosteroids, like Flonase, can stunt a child’s growth.
Resources
One pediatric allergist’s ranking of allergy meds for children
Having children with severe food allergies can be very difficult on the parent as well as the child. However, other than plain avoidance, there are now actually a number of different options for families to consider.
If you have a child under 5, you have a particularly good chance of using some of these options (particularly OIT), to cure (not just desensitize!) your child’s food allergies. Researchers have found that the younger kids have much more lasting benefits of immunotherapy – meaning they could actually be cured(!) rather than just desensitized. My kids were unfortunately past that age when I learned that information – talk about some serious “wish I knew before!!!” Below is a list of treatment options that you can now consider.
#1 Oral immunotherapy (OIT)
Oral immunotherapy involves giving your allergic child increasingly larger amounts (over a long period like a year, etc) so that they gradually become desensitized to the allergen. OIT for peanuts and other nuts is the most studied, but it is available for other food allergens as well. This is known to have about 80% efficacy rate, but there are challenges with it. Patients regularly have mild reactions and sometimes anaphylactic reactions. It has the lowest safety profile of all the treatments so far, but is the most effective. We are trying this one! Read my OIT post to get the key details to help you decide if it’s right for your family.
These are liquid drops that appear to have a higher safety profile (less side effects), but generally less efficacy than OIT. It’s also much easier than eating doses of your allergen each day. It involves putting small drops of liquified allergen underneath the tongue and holding it for a couple minutes – this also has to be done for 1+ years. Like OIT, it’s unclear how long the benefits of the therapy can last without regular dosing. Some OIT practitioners offer SLIT, but not many yet. SLIT is also available for environmental allergens. The most recent research out on SLIT found the efficacy rate to be about the same as OIT. If the research continues to be promising, this option may emerge as the option that most allergists will be comfortable with due to its safety profile.
Photo: Patient undergoing SLIT from snacksafely.com
This is a patch that you place on the skin that releases small amounts of peanut protein that mixes with your sweat to get into your skin. So far, the research says it’s not as effective as OIT or SLIT, but does offer some modest protection.
This is a Chinese herbal medicine formula even less available than OIT or SLIT. As far as I could tell, only one group led by Dr. Xiu Min Li (Western medicine – validated doctor, for those who have a lot of doubts about Chinese herbal medicine) is investigating this, but they have had hopeful results. This medicine works by altering the patient’s immune system response and involves taking up to 30 herbal pills/day for an undetermined amount of time until lab results show bloodwork low enough to warrant food challenges. The patient doesn’t ingest any of the allergen until lab results indicate the body is ready. There is a Facebook group called “Chinese Herbs for Allergies” and people from all over the world (Australia, UK, etc.) work with her office for in-person or tele-consultations.
This one is less well known than the ones mentioned above. I have not had a chance to read much about this method, but appears to be a homeopathic approach to strengthen the immune and digestive system first (through probiotics) and then gradual ingestion of the allergen (that part sounds like OIT). I found some news coverage and well-known chef Ming Tsai has a son who was cured of his allergies with this method and spoke about at on this episode of Dr. Oz.
#6 Peanut allergy vaccines and antibodies
These are fairly new and I haven’t gotten around to reading enough about them, but they sound promising and I wouldn’t rule out trying them even after having completed OIT. They seem only available in clinical trials for the near-term.
Stanford just released news that an antibody treatment that they piloted was successful in allowing peanut-allergic patients to ingest about one peanut’s worth of peanut protein about two weeks after having received just one injection of the antibody. Compare that to the ~6 month process of OIT for one nut’s worth!
Recently, we decided to have our children try oral immunotherapy (OIT) for nuts. OIT is just one of many treatment options emerging. This was a huge, agonizing decision for us and we went back and forth several times for months before we finally committed. Readthis post, “Stopping OIT at One Nut,” for where we are with OIT today.
My takeaway
This post is a summary of the key information (but a long list, nevertheless) that I found helpful in making our decision and knowing what to expect once we started OIT. I gathered it through reading online resources, quizzing OIT providers, and lurking on Facebook private practice OIT groups.
OIT for food involves ingesting increasingly larger amounts (often referred to as “doses”) of the allergen until you reach your target amount of desensitization. You decide what you want your target to be.
Some people just want to be “bite-proof” which is being able to accidentally ingest the equivalent of say, a few nuts, and not have a reaction. Others want to be able to eat a lot of the allergen.
Desensitization is not a cure – OIT desensitizes your body to the allergen so that you don’t react, but you are still allergic and you may still have reactions (more likely to be minor, but reactions nonetheless) to the allergen.
There is about an 80 something percent success rate in clinical trials. OIT providers say that success rate is more like 90+ percent because of private practice’s ability to tailor the treatment to the patient. In clinical studies, participants may have to drop out if they can’t keep up with the trial’s dosing schedule, etc.
Doing OIT is often referred to as a program of X number of months, after which you graduate and go into the “maintenance phase.”
The length of the program is determined by the patient’s goal, how well the patient tolerates the doses and the gradual increase, your own scheduling availability for increasing your dose (aka “updosing”) at the OIT office, and your OIT doctor’s protocol.
The maintenance phase, at this point in time of medical knowledge, is basically the rest of your life! Once you stop increasing your doses at the OIT provider’s office, you go into maintenance phase. If you ended your program at a dose level of say, 3 peanuts, then you are supposed to eat the equivalent of 3 peanuts a day for the rest of your life. After being in maintenance phase for a couple years (time varies by patient), you may be able to reduce your dosing to twice a week (like Mondays and Thursdays) or every other week, etc, but it all depends on the patient.
If you don’t finish OIT or quit during maintenance, you may lose whatever desensitization that you have gained, but in theory, you don’t become more allergic because you tried OIT.
OIT in practice looks roughly like this:
First dose appointment – Your initial dose day may involve taking very, very small amounts of the dose up to a pre-determined total dose or until there is a reaction, known as an eliciting dose. This depends on your provider’s protocol. The amount that you stop at is the amount that you will be ingesting daily at home until your next appointment.
Dosing at home – you take the dose amount of the allergen daily at home, with applesauce (applesauce may be best if you experience problems with other foods) or any foods you like (to either hide the taste, or ensure you get the entire dose). Prior to the dose, you should have a meal or a high carb snack. Apparently, this helps to minimize reactions.
Updose appointment – you return to the doctor’s office after a minimum of 1-2 weeks on your dose (or more depending on scheduling and how the dosing goes). You do this until you reach your target dose and enter the maintenance phase.
Rest period – for 2 hours after each dose, you should not exercise, shower, or do anything that may raise your body temperature which is currently believed to increase your chances of a reaction. One well-known OIT provider explained the idea that an elevated heart rate increases your blood circulation (which may have histamines from the dose) and therefore spread your body’s reaction. Nevertheless, reactions can still occur after the rest period and also during maintenance.
Vacations/sick/exceptions – you’re not supposed to dose or fully dose when you are sick (more likely to have reaction due to increased inflammation levels in the body or higher body temperature due to fever), traveling (elevation, far from hospital, time changes), or doing things that may make it difficult to follow the rest period. After these exceptions, you contact your doctor to get instructions for slowly building back up to the dose you were on.
The protocol and guidelines you follow will vary depending on the OIT provider you choose as well as on the patient’s needs and progress. There is no standard protocol and if you consult a few OIT providers, you will find that each doctor’s protocol varies slightly. These are some of the differences that I found:
Dosing schedule – number of doses per day seems to range from 1 to 2 doses per day. Increasing the dose can also vary from one increase per week to every two or three weeks. Some providers say you should only dose in the mornings as there seems to be an increased likelihood of having a reaction to an evening dose (rising cortisol levels, etc.). The schedule may also be modified due to the patient’s progress.
Rest period: in addition to the 2 hour rest period, some providers say you should not exercise for 1 hour before your dose. Some providers have reduced the required rest period from 2 hours to 1 hour.
OIT is available for most of the top allergens (milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat and soybean), but depends on your provider.
Multi-allergen vs. one allergen OIT: You can do OIT for multiple allergens at once. Some providers recommend it, others don’t. I preferred not doing multi-allergen OIT because I didn’t like not knowing which allergen the body was reacting to.
Zyrtec vs no Zyrtec: some providers require that Zyrtec or some anti-histamine is used prior to dosing. Others say it is optional. Some doctors require it for updosing and some doctors ask that you don’t use it on updose days. Pretty confusing. After some inquiry, I understood that the anti-histamine was mainly for the patient’s comfort and to avoid experiencing mild reactions. It wouldn’t prevent the chances of you having anaphylaxis if you took it nor would it make you physically any less desensitized to the allergen in the long run. One provider also explained that routine Zyrtec is highly recommended for the pre-teen ages 7-12 because they can generally be more anxious about OIT and having minor reactions can cause them to develop more anxiety over the allergen.
Other medications during OIT: Antacids, asthma medications are the most popular other drugs that you may find are needed during the course of OIT. Apparently, it’s important to keep asthma under control during OIT as uncontrolled asthma increases the likelihood of anaphylactic reactions. Even asthma that is exercise-induced or environmental allergy-induced may be very subtle (and never a problem for you or your child previously) is a red flag for OIT providers. If there are some warning symptoms such as needing albuterol or corticosteroids during colds or having persistent coughs, etc. during allergy season, OIT providers will likely put you on an asthma medication such as Qvar, Flovent, or Singulair. We had a bad reaction to Qvar and ended up treating through TCM with some success.
Xolair (an anti-IGE medication) is sometimes recommended for highly allergic, high risk individuals. One provider said that she would not normally start considering it unless the patient’s IGE levels were >100. If used, you would need to start it two months before you begin OIT. To take effect, Xolair would need to be given at 1 shot/month for 3 months. Xolair is currently only approved for chronic hives, so unless you have been diagnosed with chronic hives, you would likely need to pay out of pocket for the shot at ~$1300/shot. However, you would be able increase your dosing much more quickly than you would without Xolair. I’ve read a post that talked about providers who provide the drug for free in order to get through treatment faster – interesting post that hints of the provider drama behind OIT.
Note: the medications come with side effects. All of the medications listed above (anti-histamines, asthma medications, Xolair, etc.) seem well-tolerated by many, but all come with some troubling side effects related to emotions and behaviors that seem to affect a significant number of users. These are often reported on the Facebook OIT parents groups.
Anyone is a candidate for OIT and potentially treatable.
However, it’s believed that the younger you are when you are treated, the better chance you have of becoming not-allergic as opposed to just desensitized. This is because the young immune system is still developing and capable of resetting. Think the preschool set. One OIT practitioner told me that even 6 year olds appear much less likely to reach “no longer allergic” status.
At the same time, I’ve heard from some moms that their kids (who started OIT around 10-12 years old) are not allergic anymore and can eat as much as they like of the allergen.
Maintenance phase doesn’t mean that you are home free:
Some OIT graduates have reported reactions during maintenance if they don’t follow the rest period
People do experience reactions (even anaphylactic ones) after they have reached maintenance (EVEN if they have followed the rest period!) and even some with very low IGE numbers
Hormonal changes (during puberty or periods) can sometimes cause reactions
The only current way to know if you are no longer allergic is by having low enough IGE levels and negative skin prick test and passing a food challenge. This seems unreliable to me, however. In the same way that some people may develop allergies later in life, it seems to me that even if you no longer clinically present as allergic at one point in time, you could always redevelop the allergy. My conclusion is treated patients will always want to have the Epipen handy and you will always want to be careful of what you eat and how you feel.
Costs with and without insurance
With some insurances, your coverage can be up to 100%, minus co-pays. The providers typically bill your visits as specialist office visits and food challenge visits (like any other allergy provider would). If your insurance covers regular allergist visits, then they would probably cover OIT because they don’t register it as anything different.
If you don’t have insurance coverage, or your provider doesn’t take insurance, it seems like out of pocket costs could be $10K – $25K per allergen/year, depending on your goals and personal allergy situation. I got this cost range from a Facebook group for families doing OIT and one of the providers we visited.
There are often clinical trials available for certain allergens, but the cons seemed pretty significant. In some trials, you don’t know if you are the control group and in others, you have to keep up with the trial’s schedule of increasing doses or whatever other parameters they are testing for. Otherwise, you could be dropped from the trial if you cannot keep up with the dosing schedule, and so on. However, trials are free for the patient.
There is a new allergy “drug” called Palforzia, which has been FDA-approved and they may start to change (probably increase) the cost structure of OIT treatments. The drug is essentially pre-measured peanut flour in the form of a pill, so you don’t have to do it yourself and which I guess is supposed to help standardize the dosing protocol of OIT providers.
There are a range of things that could be reactions (other than anaphylaxis) and the problem is that you will often be unsure whether it’s a reaction or just something else that you might get in everyday life. Range of reactions:
OIT is introducing a new habit into your life and family lifestyle – like brushing your teeth and flossing, dosing is something you will have to remember to do everyday or on some schedule.
Thoughts after starting OIT
For us, OIT is turning an “unknown” into “slightly more known.” Choosing to do OIT is not a “no-brainer” and is a very personal decision. OIT takes more time and energy than simply nut avoidance, especially as it appears that patients continue to be at risk for reaction even after “successfully” completing immunotherapy. Unlike some who have extensive allergies, our nut allergies were not affecting our lives significantly and we wondered if we were bringing more risk, concerns, and health issues into our lives. On Facebook groups, you will see other families wondering the same thing.
However, I will say that on the first day of dosing, after I saw that my kids were actually able to ingest very small amounts of their allergens, I realized that I was getting some answers. I had never known how allergic they might be. I hadn’t known whether they could even touch a nut. We had always worried that if we kissed our kids after eating nuts that we might cause a reaction. We knew nothing about their reactions – it was just this big question mark. Now we’re beginning to know a little.
Resources
I read a lot of articles and studies about OIT and included some of them here.
Informative OIT starting points – helpful for understanding what it is about and what doing OIT entails (the top 10 myths section in particular has become much more detailed since I first came across it in early 2019, so if you haven’t reviewed that page in awhile, check it out again):
Facebook groups for OIT patients or parents of OIT patients (just a couple here, but there seem to be lots of these, so worth checking them out and finding one helpful to you):
Interesting article on SoCal Food Allergy Institute, a well-known food allergy treatment center that uses a more customized, yet similar approach to OIT:
Things I wish I knew before. . . 
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